There were countless recalibrations I went through when we were caring for my Dad, probably because once recalibrated, things would shift again.
Our rollercoaster was twisty and fraught. So one of my first personal recalibrations was to try to adjust expectations of myself and my ability to control or predict outcomes.
Less on if I do xyz then abc....and more focus on here and now actions. Less about trying to hold tightly and trying to control, more about agility and responsiveness.
One recalibration for me has been to schedule a fun thing first. We get stuck in caregiver mode and then you lose energy. Creating new memories or having a little craft time are important, too.
One thing I like to do is bundle my time. What u mean is this— I can leave Dad alone for a few hours during the day. So, for example, if I need two hours for errands I’ll tell him I’ll be home in three. Then I take that extra hour to do something for myself.
That is a great tip! Also, why is it so hard to tell parents the truth; “I need a little time for myself?” I struggle with that more than seems necessary!
It has always been hard to ask for help in our family. I grew up seeing my mom doing everything--from raising a family with four kids, cooking, cleaning, caring for her mom and sister and going to nursing school at 40.
She never complained or asked for help.
For a long time I considered it being weak to ask for help. If my mom did it, why couldn't I do all I was doing and take care of her.
For the past three years, since her fall and I have taken on many of her responsibilities, I didn't say anything because I didn't want her to feel like she's a burden. My body has broken down multiple times in the first two years, so my siblings had to take on more.
Now I have made clear boundaries for myself and I have recently explained to my mom how I schedule my life around her and when she refuses the care and safety we have worked so hard to maintain, it impacts everyone. It makes it harder for me to do my job and spend time with her.
I think she understood because she at least allows the caregiver to come now.
I understand this tendency so well. My dad was also very capable and always busy. He instilled a strong work ethic in me, but I can get caught up in the doing sometimes and feel like I do the majority in our household. I’m glad your mum has begun to accept help, and also realise she needs it.
I’m glad you were able to set boundaries and get support from your siblings. That’s so important. I hope you are able to have some quality time for you.
I don’t think we always realize that when we refuse help we actually make it harder for others. This is especially true as we age. Good for you for being honest with your mom and setting those boundaries. That’s how we keep going.
I know for myself, it’s because I feel selfish even though I know that I’m not. I think I feel that way because I know that Dad doesn’t have that luxury. I know that’s not my fault, and I do everything I can to help him maintain as much independence and normalcy as possible, but those feelings are still there. But I take that time because I also know that it helps me stay healthy so that I can be there for him.
Really love this. Before starting on the work of care, before you’ve exhausted your energies to think of yourself - arrange something fun for yourself (and spouse of 28 years!) so you have something to look forward to!
Having that flexibility is key as is releasing control. I try to come to each situation as it is and know that no matter how much I prepare, it doesn't go the way I imagine.
Hi friends, I wanted to share that Adrian Chung, Julia Yarbough and I will be hosting a Substack live Monday, June 1st from 3-3:45 PDT on the emotional and practical aspects of caregiving from afar. If you are free to join, we’d welcome commentary and ideas from this amazing group of wise individuals! We hope to have a lively conversation in the chat! Cheers!
Thank you @Victoria for this opportunity to feel like the voice of the caregiver has value. For me it’s been a journey of 14 years caring for my mother-in-law who has dementia and my father-in-law who had an early onset of Alzheimer’s. He has now passed away but caring for Mom continues. As beautiful a journey this is, it takes its toll. I think my major moment of recalibration was when I started my newsletter here on Substack “Contemplations” which essentially gave me a space to offload my thoughts and along with it release all the negative energy or stress that I was feeling. It’s been therapy for me. Through Contemplations I started my series of Dementia Diaries in which I have tried to depict how the compromised mind functions. These diaries come from what we go through with Mom. Writing it down helps alleviate the frustration and in fact helps sort through the mess and find answers and meaning. It has been my escape when I can’t physically get away. However, caregiving cannot be done alone. Support is always needed. I have surrounded myself with people that can give me the support I need. Whether it’s someone lending an ear, sharing a cup of tea, indulging me with a discussion of a good read, or accompanying me for a swim…I am blessed to have this posse of people who give me the break I need. I take time off to recalibrate and when I am back an hour later, a day later or whenever, I come back stronger with more love and care to give.
Hi Tahia, it's good to see you here. You're very welcome, every voice has value and it feels good to create this space for us.
I'm glad to hear you have your posse of support and that your articles have been a release for you. You've reminded me of the breaks I had when we were caring for Dad: a walk to the gym, 20mins on the treadmill and walk back home... kept me going. Moving was a way to metabolise the stress. A physical recalibration to keep me sane.
Thanks so much @Victoria for inviting me to participate! It feels very timely as this week, I returned from visiting Mum after she had a fall that put her in hospital. Thankfully, she's alright but we've had to spend time recalibrating how she lives and the type of support she needs.
I know it is a journey for her - I've found it too easy to focus on the care, the decisions, and the actions - but it is equally important for me to put myself in her shoes as she lives through the limitations of her health. It has meant that some changes have taken longer to put in place than I'd like, but we're getting there.
We talked at length about finding companion care to help when she goes out and navigates the chaotic streets of the city. When earlier conversations were along the lines of "I don't need care, you can't lock me up at home!", they've evolved into "I suppose someone being with me will give me confidence to go out and do all things I want."
What previously was a source of resistance she has now recognized will enable her to keep doing what she wants - I just wish it didn't take a fall to prompt a change in mindset. But I have to acknowledge that this is her journey, more than anyone's, and how she responds to her changing health situation is of her choosing.
I'm a fervent believer that Mum's autonomy and ultimate decision-making authority are crucial to navigating the challenges of aging, even if I try to influence the direction. But it means living with the consequences of those decisions - both for her and me.
@Julia Yarbough @Kirsten Mau @Jeremy Mohler @DebbieF
I’m just reading through every comment in order this morning. I’ve been working on a huge project and just skimming, so my apologies.
Adrian, you’re in good company here.
I’m a firm believer in protecting their autonomy and dignity. That comes first.
But as others have shared, it’s a dance, and they get overwhelmed with the amount of information and decisions that have to be made.
One thing I do is to tell Dad about something a “friend” of mine did or something her parent is doing. There is no such person, and you can decide how you feel about that (I think of it like that imaginary friend so many kids have), but it often works when Dad needs to do something that he doesn’t want to do. I just casually throw out the comment, then mention it again in a day or two. After three or four times of doing this, Dad will bring it up like it’s his idea. It doesn’t work every time, but it does work.
I’ll also add that while I want to protect his autonomy as much as possible, I will step in if he’s making a harmful choice.
A friend of mine's mother is also going through similar circumstances like my mom and so I have brought up her journey. My mother is a nurse and worked in a memory care facility so she knows what this journey entails. I think that has made it harder to approach subjects, because of her knowledge.
When she gives advice about it and then the same situation comes up for her, I feel like she's already processed some of it in her mind.
Yet, she still is quite determined to remain in her own apartment. I learned from a dementia care class to say, "We will do everything we can to respect your wishes as long as you (and us) are safe." This has defused situations very often.
It's such a hard balance to care for her, make sure she is safe, provide that autonomy, and take care of myself.
Helps to be able to voice this and read what others are doing.
Thanks for sharing this, Janine. SO true. It also helps when it's the doctor or medic who frames the "safety" and "needs" . This can help distinguish between what our parents wish and want versus what treatment and support they need to be safe. e.g. re-ablement in a rehab facility instead of discharge to home.
This is great advice: I learned from a dementia care class to say, "We will do everything we can to respect your wishes as long as you (and us) are safe." This has defused situations very often. Thank you for sharing.
That is exactly what I said to have a caregiver come in. My mother will only allow someone in once a week for two hours! She needs so much more but she won't allow it. That's where her agency and decision making comes in and I leave it as it is knowing that I have done the best I can.
For now it's OK. We're managing but eventually I will bring up her safety again.
I think an interesting topic would be hiring caregivers and how absolutely difficult it is to find someone and keep them! I have some tips!
I have two amazing women that I would be lost without. They're private pay and if I could pay them $50/hr, I would. But I'm very liberal with time off and sending them home early. One has been with us five years, the other is coming up on two. I have been through divorces and moves and heartbreak with these two and I'm glad to be there for them because otherwise, this house would be a crime scene...
Kirsten, that sounds somewhat loaded as a discussion - in the way you've written it. I don't know the backstory but it sounds like there's a tug-of-war. If the subject is sensitive for them emotions are likely to run high.
The bottom line will always come down to "what will the caregiver actually do", and that might be easier to deal with in terms of specifics rather than negotiating with the concept of a caregiver.
You could start small e.g. cleaning floors and making tea - while also asking the caregiver to watch over your parents. Of course, I've no idea about your parent's needs and medical situation so things may be more advanced. Identifying specific tasks the carer can do to help your parents maintain their routine and independence, the way they like it, is a good starting point. Start small, build the relationship and trust - also because you may cycle through a few carers before you find a good one(s)
Pls ignore all that if it doesn't make sense for you/them.
....and it's okay if you feel frustrated, really stressed, or angry about anything during the process of enabling your Mum's independence, Adrian. I just wanted to say that because it's easy to mute our own feelings when we're focused on their needs, and the actions of the care. Maria wrote a deeply resonant prompt for the "Caregiving as a Parent" discussion (May 1st) I think everyone we can all relate to her words: https://mmesser.substack.com/p/holding-both-when-more-than-one-truth?r=a9y7d&utm_campaign=post-expanded-share&utm_medium=web
I love how Sarah said, "you are building trust while providing care -- and that is quite a dance" - SO true! I think that's why the phrase "Tango-ing and tangling" popped into my head when I was writing the prompt...who leads when, on the front foot or tangled up
You may know the work-related quote "Change moves at the speed of trust" by Steven Covey...meaning trust is an accelerator or enables more confident change as a team (my interpretation)...even if you get a little tangled, you can figure out how to hold onto each other in that dance frame.
For Mum and I, it’s definitely been a long-term dance. Over the years, trust has grown along the way as we’ve navigated her care together. There has always been a back-and-forth, both as her care and health needs have evolved but as mine have with career, home and location - the continual calibration as one might say.
One thing I’ve learned is that some shifts, especially around accepting support, really have to come from within her. But I hope she knows that she will always have my encouragement and support. I can try create the conditions for change, but I've learnt not to accelerate it beyond what she’s ready for.
Finding that balance between when to lean in and when to step back is an ongoing aspect of caregiving that I think I can always improve on.
When we take everything away, including their ability to choose and make decisions, we take away their power and purpose. It’s not good for us or them.
Leaning in and stepping back sums it up perfectly. It is a dance, for sure. I’m cheering you on as I read your comments.
With Dad, I always wanted to keep his dignity intact. It sounds old fashioned, I know, but that’s who he was. I had a strong desire to protect that. I’m not going to lie, at the end, my role did become parental because the Alzheimer’s had reduced his mental capacity to that of a young child, but I didn’t let that change how I spoke to him, or treated him.
It’s hard to know whether we are doing it the ‘right’ way or not. That’s why these forums are so helpful. My focus was on keeping Dad comfortable and at peace, the best I could.
I’m so glad, that in your case, trust has grown between you as you navigate this caregiving space. You are by her side, and yet, you give her the space to shift from within. A fine example of the caregiver’s dance.
Absolutely, Sally, "keeping his dignity intact" was important in our care of Dad too - not old-fashioned at all!
It's part of respecting and protecting their personhood - that's a phrase I came across when I was frustrated with people talking ' at Dad' rather than with him. We were lucky to have some doctors who treated him holistically rather than piecemeal - but Dad's conditions: heart failure, Atrial Fib, rheumatoid arthritis, vascular dementia and bladder cancer, meant Mum and I had to constantly and proactively champion his wishes and needs. Each emergency was a trial.
In the moment, we make the best decisions we can, and I think the way we give care is a function of their needs and health, which can shift over time. You did an amazingly given everything you went through, those last moments with music must have been beauitful for him.
Sorry I've needed to step away from the discussion for a few days while we're spending time with family. I've been skimming and look forward to savoring so many wonderful perspectives - like yours here, Victoria: "in the moment, we make the best decisions we can." I couldn't agree more. I think at any given moment, we're all doing the best we can with the information we have at the time. Which is something I often remind former caregivers of when their fully-rested and less-frazzled selves are looking back with regret about this or that, including myself. :)
Adrian, I’m sorry to hear your mum is having increasing health challenges. Unfortunately, as you say, sometimes it takes something scary like a fall to help everyone re-evaluate and get on the same page.
And I love, love, love this: “I'm a fervent believer that Mum's autonomy and ultimate decision-making authority are crucial to navigating the challenges of aging, even if I try to influence the direction.”
I felt the same in my caregiving journey. Since my mom had no cognitive impairment, she was able to make her own decisions, and I reminded her frequently that I was just the helper and she was the one in charge.
Thanks Sue, I'm glad you also took a similar approach with preserving your Mom's independence - we can't expect parents to make decisions for themselves and take responsibility if we put them in positions of total dependence! Curiously, how did you navigate situations where she was headed down a path you didn't think was in her best interests? How much were you able to disagree without damaging the relationship?
Thanks, Adrian. Honestly, I always thought supporting her autonomy was in her best interest, regardless of the decision she made. Mostly. :) Of course, there were times when I might not agree, which is when we talked through the situation and what the options and potential outcomes might be. She was a wise, strong, independent woman with deep faith, and in the end, it was always her choice. Ensuring that was the case was hugely important to us both. Thanks for asking!
Thanks for sharing more about your approach! As caregivers I think we live with a lot of concern and fear for our loved ones - that the world is scary, they can’t do this or that without being at risk, or the ramifications if they came into harms way.
But we run the risk of underestimating them and removing their agency, which shifts the conversation from being about enablement to censorship. And I don’t think our parents want us to censor them.
I’ve seen caregivers take a more dictatorial approach which I really do not agree with. It ended up disempowering their loved one and breeding resentment. It takes a lot of judgement, familiarity, and context to calibrate correctly - and what works today may not apply tomorrow.
Adrian, I'm sorry I haven't had time to jump in the last few days as we're spending time with family. While I may not be able to respond to all your comments, I just want to thank you for sharing such rich and wise perspectives. And to say how blessed your mum is to have a such a caregiver as you. :)
No worries - we're all busy people, I already appreciate all the interest and support you've shown! I hope you're also having quality time with your family ;)
Same for me, Sue, talking and discussing options is so important.
Adrian - if I may add to Sue's thoughts. Most of the decisions we went through were treatment/medical. I researched, provided information, thoughts on scenarios, and gave my opinion/recommendation to enable their best-informed decision, with/without their impaired cognition. BUT then there's a saturation point - when they can't take more discussion or the decision is done - period. At that point, I would figure out the best next steps and make sure they were aware of what I was doing.
These days, I can feel the exact moment when it's been enough or too much for Mum. I just make sure I'm 100% clear on what she wants, summarise and start actioning, keeping her looped in.
Relationships evolve, no matter what we may want parents to do, because it's their life and decisions to make. We may not think it's in their best interests, but they know their best interests the best....until they can't express them. Then we have to do that for them, even when, we may not agree with their wishes but have to execute them.
I'm sensing you're holding the tension of wanting to sustain your mother's independence AND worried about her safety. Sorry to say, it's a constant tension in caregiving.
If you feel comfortable sharing, let us know if you have a specific situation or worry that we can offer thoughts on. I hope some of what I shared helped.
It is great that you have established a pattern with your Mum around collecting information, sharing, coming to a decision, and acting on it. That familiarity with knowing the limits of your Mum’s ability to absorb before shutting down is important because information overload can be dangerously demoralizing - analysis paralysis, if you will. Particularly, decisions you highlight around treatment can become very heavy quickly.
It is generally clear when Mum is reaching her limit as she expresses her frustration and agitation - and if she isn’t ready to make a decision right in the moment, we can always revisit it later after she’s had more time to reflect and process. I’ve found she generally is good about thinking things through on her own time and coming back with a fresh perspective.
From a legal and incapacitation perspective, there is a push here to have power of attorney and advanced medical directives in place to be clear about how a care recipient should be treated in the even they’re incapacitated. I can’t remember coming across them when I was in the UK but they often get discussed here in US care circles.
Thanks Adrian. It sounds like you've established a meaningful dynamic with your Mum too.
Yes, absolutely, they're called Lasting Powers of Attorney here in the UK - 2 types: Finance and Property, and Health and Wellbeing. Additionally, there are a few things we did - Emergency Health Care Plans, and for Dad we had a Do Not Resuscitate and wishes written. As well as the Will and Letter of Wishes.
Adrian, it sounds like you are building trust while providing care -- and that is quite a dance. I love what you shared here: "When earlier conversations were along the lines of 'I don't need care, you can't lock me up at home!', they've evolved into 'I suppose someone being with me will give me confidence to go out and do all things I want.'" What a win for you both. Well done.
Thank you Sarah, it has been a journey and for the most part Mum has embraced the lifestyle changes she needs to make. However, accepting constraints on how one lives one life can be a challenge, though I'm glad we have gotten to a place where she can see help as an enabler and not a constraint.
Thanks Khadra, yes! With Mom, the focus was on helping her integrate her belongings and life to be assured that our home was now her home. With Tina, the focus was on trying to do the same with our stuff without disrupting her environment too much.
There were micro and macro recalibrations for us. My mother, who I was taking care of, faced a deadly cancer. She had to daily recalibrate expectations for herself and I had to witness those and find ways to support her even when I disagreed. I remember thinking one day: She’s going to go from a fully functioning adult month by month, week by week, day by day to start losing all faculties. I have to let go of any expectations that I believe how this is going to roll out. Of course I stumbled so many times along the way. So each day, I’d reset my expectations. My mother was becoming the child and I was becoming her mother.
I don't think there's any way to prepare for this, or any way to explain it to someone who hasn't gone through it. With childrearing (full transparency, I'm childless) you get more freedom as they become more independent. It's expected and there are standards and milestone and measurements to refer to. There is an entire industry to support new moms and the advertising industry especially markets to you. But you don't see ads for bed pads, hell, the corner grocery doesn't carry adult diapers. There is a whole learning curve of how to keep your LO safe without infantilizing them. Without support like this Substack, and some great Facebook groups and Caring Kind (was NYC Alzheimers Assoc) I'd have been sunk. This could have turned into a crime scene, with yellow tape blocking the doorway to my apt, now the site of a murder /suicide. just kidding.but really.
This is so relatable. The letting go and stumbling along the way. I feel this is a constant thing. I often catch myself shift as I care for my mom. It is constant.
A moment? Many moments. As one person said, when I looked back at my records and journals I realized I’d been doing this a lot longer than I took credit for. Today it’s cohabitating and hands on, all decisions are on my shoulders, but more than a decade ago I took over management of her finances and utilities. I have to recalibrate on a regular basis. Little things like giving myself permission to do nothing for a whole weekend, despite lots of tempting invitations. I was exhausted and chose rest over community. We’re lucky enough to have an aide here 8 hours/day every day. When one needs a day off or calls in sick, I was taking the day over. Now I will, if I have to, but I’ve chosen to spend money that would eventually be my inheritance to make life easier now—I find a substitute. Mom is batty as hell with advanced dementia, but really healthy. Realizing this could go on for a lot longer than the eight years of living together, I’ve looked at memory care facilities. I haven’t done it, I’d rather spend the money on home care. But either way, I’ve shifted my needs back a little closer to center.
I’ve taken pottery classes, figure drawing, nature illustration. Picked up an old camera I adore. Carry a sketch book. Do not read more than 25 pages of a book if it doesn’t grab me. Learned how to use contouring makeup (it helps a little). Got a couple of cats because I needed something that responded to my affection as Mom rarely does anymore.
That might have been the biggest recalibration. The hardest. Understanding that I could no longer get what I needed from the person who has been my primary emotional support my entire life. That slipped away. I’m still working on recalibrating my needs on that front.
Jodi, I love how you’re caring for yourself as you’re caring for your mom. Obviously, you learned long ago that for many caregivers, this journey is a marathon, not a sprint - so pacing is critical if we want to be able to continue doing it.
And bravo on choosing to hire some help! For both Mom and Tina, we had a few wonderful private-hire caregivers who could just take over to allow my husband and me to get out and take care of ourselves for a bit.
I also love how you’ve kept up with your own interests. Sometimes we need to put our lives on hold if our loved one is having some type of health crisis, but otherwise I’ve found it’s so important to keep moving ahead with my own life, too.
Omg that hit home, I'm so glad that you recalibrated and got so much out for yourself as result, but yes it hard to have someone who supported and loved you without conditions not be there in the same way. My heart goes out to you x
Looking back at my journals, I’ve realized that I’ve been taking care of my mom since my dad died 28 years ago. It was more about taking her to do activities but at 57, she was still working, mobile, even if she had some health issues.
About 10 years ago, she began having balance issues. She had retired and I (along with my three siblings) would come and help her with household needs.
When she had a car accident about a couple years after, she stopped driving, I took her to appointments and took more care of her. Having a family, running a business, and caring for my mom pulled me in many ways. I’m a fix-it and get things done type of person, so that’s how I ‘handled’ my mom. I say ‘handled’ because looking back I’m sure that’s how it felt to her. We’d butt heads and I couldn’t understand why she didn’t see that doing it my way would make it easier for her–actually me.
When she began experiencing cognitive decline, she pushed even harder to maintain her independence and agency.
In 2023, she had a bad fall and had to have major surgery. That changed everything. It took this, my health failing from the stress and doing things my way, and her decline for me to change things.
My recalibration was caring for mom through mom’s lens, not through mine. I wasn’t there to fix things, I was there to care for her, be her advocate, and show her the dignity that she deserved.
It didn’t mean I stopped caring for myself. I actually put boundaries into place that opened space for me to be with her as she is. To accept that no matter where she is in her life and health journey, it’s important to her to have her agency, voice, and choices in how she lives.
It may not always be the easiest way for me and my siblings, but I am OK in the knowledge that I do the best for my mom on the path that she has chosen.
She’s safe, happy, and secure. That’s all that I can ask for. That shift in my mindset did wonders for our relationship.
28 years no wonder you didn't realise the impact of stress until later, but you did and now as you say you're looking through mum's lens now, and you have your boundaries that give her the space to be herself, and that's wonderful to read. I'm so glad that you found that place and the impact on your relationships.
I'm the same. It floored me when I reread my journals and that's what amazing about journaling too. That reflection but also those AHA moments and how our lives shift over time.
I cared for my father in my parents' home from 2018 until his passing in 2024, and I now care for my mother, who is probably in the early stages of her own dementia journey, but keeps me more busy with health issues not related to dementia. I live in central Ohio.
My moment of recalibration wasn't gradual — it happened in an emergency room. My father's blood pressure had reached a systolic of over 220, and when the ER doctor asked who was monitoring his medications, my mother and I looked at each other blankly. Nobody was.
I drove straight to the drugstore, bought a pill minder, gathered every medication in the house, and took over from that moment forward. I stopped being a family member who was helping out and became a caregiver — not because I planned it, but because nobody else was going to do it.
That pill minder changed everything. It was the moment I understood that waiting for someone else to step up wasn't a strategy. It taught me to act rather than assume, and I've carried that into every decision I've made as a caregiver since.
That's the surprising thing sometimes in families, that you're the one that realises that you have to step and do something, rather than assume someone else will. Hopefully you had family discussion later to share the load but as my mum always said you were there for a reason.
To me, caregiving is a constant recalibration! That's especially true as a loved one's health declines and each day seems to bring a new reality that requires agility and pivot-on-a-dime adaptation. Of course, I helped many families with this process during my years in hospice, but with my own family caregiving, our two very different scenarios required lots of recalibration.
After hip fractures six months apart, my mom sold her place and moved in with my husband and me. She lived with us almost 10 years and for the last four years of her life, needed lots of help and hands-on care. But for my mother-in-law (Tina), we sold our place and moved in with her. We cared for her for about five years. One had dementia, while the other didn't. In both cases, there were lots of adjustments both we and they had to make. Mom stepped into Jesus's arms in 2015, and Tina did the same in January. My husband and I were blessed to get to care for both of our moms for many years.
I could pick many recalibration moments, but one thing that sticks out for me is the shift that takes place when I see a loved one declining significantly. Since I'm a nurse, it really bugs me when I need to provide care and don't have all the supplies I need within easy reach. So for both Mom and Tina, when care moved from assisting with tasks to needing to dive in and perform those tasks, everything got rearranged. The bedroom, the bedside, the bathroom, the closet.
There's so much to do when you're providing hands-on-care for someone, and it's a big help if hunting-for-what-you-need isn't yet another task on your list.
I also wanted to add that now I have space for me, I’m not sure what to do with it! It’s funny how that happens. We get so used to putting our lives on hold, that when we finally get a chance to live it, we don’t know where to begin!
I can imagine. Like a new mother whose only subject of conversation is her babies, all I have to talk about is Mom, her care, and everything that involves. My life has gotten very small, but my heart has gotten softer, larger. I guess you just let it evolve, this new kind of empty nest syndrome. Grief has no timeline. And no specific shape. I see myself feeling very lost as well. Hugs to you Sally.
I’ve really enjoyed scrolling through these conversations. A lot of helpful insights and wisdom here.
Yesterday, we had Dad’s Celebration of Life. He graduated to heaven at the end of February. As I reflect on these last couple of years, I believe recalibration has been a constant throughout. Just as we recalibrate into a different season, it switches up again. I got used to my focus being on him, and keeping the household afloat. Now, it’s time to allow myself to think about other things. I have found that difficult. Dad’s Alzheimer’s was so consuming, especially in the last six months. I’m still in that stage of appreciating the small things, of being able to sleep through the night again, as well as take a bit of time for me.
Thanks so much for sharing how you're doing, Sally. There's such a season of adjustment after a loved one dies who has been the center of all our attention and efforts for so long. In the months right after my mom died - even after years of thinking I'd be prepared - I was raw, vulnerable, and often stunned that she was no longer there. And all that even in the midst of my gratitude that she had finally made it safely Home. It took some time for me to get my feet back under me again. Be gentle with yourself, my friend. And please know you're in my prayers. Big hug.
I remember those first few nights of more sleep. More than a couple of hours in one go and deeper... it takes time to drop the gears of sleeping with an ear and eye open.
Even though we pivoted straight to cancer treatment, getting some sleep was a deep relief and weird for me.
I've heard a couple of descriptions by former carers of the time immediately after their loved one dies. This one has remained with me the most: suddenly, all the strong scaffolding that we constructed for them, that formed every minute of every day, has gone, as well as our person. No wonder why you may feel lost or untethered. Having a small ritual in the morning can help, whatever feels comfortable. xo
That is so true. There is a slow rebuilding of self that takes place afterwards. Each season of caregiving is fraught with its own set of challenges. Post-caregiving is a season of limbo. I almost feel guilty for being able to make plans again. Perhaps that’s why I haven’t made many yet. As with every season of caregiving, we must give ourselves grace. It’s not an easy thing to navigate, and not something most of us choose to do.
SO true, Sue! Specific living areas become primed, and those areas become smaller. There's also a proximity and visibility-thing. The most important things needed to be visible and in easy reach for Dad, because 'out of sight, out of mind.' So there was organising for me to do hands-on care and prioritising 'to hand' things for him.
Victoria, yes! I love your point about the areas getting smaller. I've watched that so much over the years. As a person's health declines and mobility gets worse, not only does their broader world shrink, so does the immediate environment around them so they can reach their stuff. And for those with dementia, the same is true, since visual cues are so important.
You're right, its not just one calibration it goes throughout your caregiving journey. Your experience of having your mum live with you and then you move into your mother-in-law's place must've been so much harder, changing your whole home situation for a loved one. And I totally understand when you're doing hands on care, how useful it is to be so organised and have everything ready to go!
Sue, you definitely have had a lot of experience in caregiving.
I totally agree with you on being prepared.
As per Victoria's wonderful suggestion, I have a bag that's filled with all my mom needs on our trips to the doctor. It goes on the back of her wheelchair. It's so much easier to have one bag and know it's set.
So many recalibrations ... but here's a relatively simple one that has made a big difference for my dad and me:
In short, Amazon.
Here's the longer version:
For the 32 years prior to moving into a retirement community, my parents lived less than a five-minute drive from a supermarket. Then, when they moved in 2023, their retirement community ended up being even closer to a different branch of the same supermarket. What luck!
From what I could tell, Dad visited the grocery almost daily. Some days he visited it more than once. I think it had become a hobby -- an easy way to get out of the house for a bit, do a little walkabout, say hi to neighbors and familiar staff ...
But it also affected his shopping habits. Why make a long list when you can just pop over and pick up items, one by one or two by two?
After experiencing a stroke late in 2023, my dad gave up driving. And that meant giving up his grocery store habit ... or, more accurately, turning it over to me.
I think for a while I just went with it. He'd give me a short list over the phone or email, and I'd pick up the items on my way to visit him. After a while, I asked him to give me a weekly list, which worked fairly well ... until we started slipping back into our earlier habit.
Note: I do not share my dad's fondness for grocery shopping. I felt my resentment building, and I know he was waiting for items longer than he liked.
Finally, I pointed out to him how many of the items on his lists he could get on Amazon, which he already subscribed to. Kitty litter, personal products, various foods, etc. Not only would this cut down on my tours of the grocery store, but it would give him a greater sense of independence and control over when his items would arrive.
Now, a few months later, there are just a few things I pick up at the grocery store for my dad every few weeks. I can manage this!
The upshot is, I've pared back the frequency of my trips to the grocery store -- and that opens up more time for me to spend actually visiting with my dad. <3
Love this anecdote on many levels, Sarah - for your Dad's independence, for your sanity, and for how you and we learn it's not a once-and-done-and-dusted thing..(sigh)
I don't know how we'd have coped without deliveries TBH. Deliveries just make my life so much easier. I even found a place that can send Chinese frozen Char Siu Bao to us.
Love this string! My mom loves to go to the grocery store- she calls it her “social time” but it drives me crazy. I do not enjoy most grocery shopping, chatting with all the strangers, taking 5 minutes to decide on jam! But when I realized it was her social time, I tried to recalibrate it for myself. When I am home, I do online pick up. When I am there, I have to shift the way I see it. It’s time to chat, engage the brain and have a little walkabout. It’s not easy but I try.
That shift in mindset is important for our peace of mind. There are several things that Dad does that drive me crazy. But he has a reason for all of them. When I discover his reason, I roll my eyes less. 🙂
I’ve had a similar experience with my dad, but it was a daily trip to the gas station for coffee and the newspaper. Then COVID hit, and he stayed inside. The grocery stores stayed open, so I went every Sunday and got his paper. Once everything opened up he started going again, but only once during the week and on Sunday. Then he stopped driving about a year later. I go every Sunday morning and get his paper. I don’t mind him once a week, but that’s the boundary.
Sarah, time for visiting is so important! That's always been the hardest. My mom lives in an apartment and so each time I go see her, there's always so much to do. We'd barely spend time together doing something fun.
Now my siblings and I all have specific jobs so it's not on one person and we also have a caregiver who comes in once a week to help.
Exactly, Janine -- I'd rather be visiting than shopping any day!
Well done with divvying up the tasks with your siblings. So important, even when they're far away ... My brother lives about a 9-hour drive away, but we've delegated him several helpful responsibilities that he can carry out from afar. It's a tremendous help, and it keeps him included in decision-making, etc.
Yes, it helps all around. My sister who was my tag team person recently moved away so that has been tough. But we connect often and work together on medical. She handles medication refills and orders food as well.
My mom has a lot of cherished stuff. A lot. One day I glimpsed the future and realized it was going to be my job to take care of it all. This is not a decluttering project. This is an emotionally-fraught, years long process of storytelling, negotiation, guilt and trips to Goodwill.
Now, layer on health issues, cognitive issues, estate issues, and all the rest.
I’m a caregiver for aging parents. Trying to live my own life filled with its own challenges and opportunities.
So, I started writing about this to cope, process and find the humor in it all and help others on a similar journey.
Radical acceptance. This has been my goal over the last several months as I try let go of all the things my parents refuse to address. It’s not easy!
Radical acceptance - takes on so many forms. My Mum's cancer precluded any major sorting of stuff. We did most of my dad's clothes after he passed. Those bags were sorted and resorted to give away, gift...Now, we do bits, a little here and there. Our acceptance is not doing any big sorting. The majority of my things are in storage, but already went through major triages via 18 relocations across 10 countries.
Kirsten, I completely get what you mean. My mom moved from a 4-bedroom ranch with a full basement packed with possessions to a townhouse, then finally to an apartment. She had a garage filled with items and it took years to get her to relinquish any of it.
I'd take photos of items for her, help her decide if she wanted to donate or give to a family member, and slowly clear the garage.
These items have emotional memories tied to them and it's also about agency. Fear of having your things taken away.
My mom and I are going through her clothes now. She hasn't worn in years and don't fit her. It takes a lot of patience and we do a little at a time. She's going through papers which I tell her I appreciate because then she can decide what she can remove or keep.
It has sparked a clearing journey for my own home because I don't want my son to have to deal with it. Boy do I struggle to let go of things so I have a lot of compassion for my mom!
I look forward to your lessons. I moved my mom to memory care and her house is just sitting….. I know she isn’t going home and I don’t want to wait to start clearing but its overwhelming…
I hear all of that. I have had the same experience with my dad-especially helping him with his taxes this year. It’s in these small moments of struggling to sort through papers that you realize they’re not quite processing what’s going on. Then there’s fear of throwing the wrong thing out so you won’t throw anything out. I have to sneak things into the trash sometimes.
I’ve been slowly doing this with my dad over time. I know that we don’t always have that luxury, but take advantage of it if you do. By doing a little bit at a time (e.g., one drawer) he’s let go of much more than if I’d tried to make him do it all at once.
Reading this made me think of how difficult it was for Dad to sort through things when I moved in. I was going to be taking over his office, which he wasn't using at all anymore, but he still had a lot of stuff in there. As it turned out, sorting was beyond his comprehension and I ended up doing it for him. He tried so hard, but it was the first time I think I recognized where he was in his decline then. It was still early in his dementia, so on the surface, he seemed okay, but these small signs told me I was where I needed to be...
Reading this I realized, another big moment of recalibration was when Mom moved into assisted living and I didn't have to be so hands on. She blossomed and started having a life of her own again. Honestly, letting go of control a little, I felt a somewhat left behind, but we both had more freedom and a better relationship because of it.
I've tried to do the same now that we're living together, to allow her her own relationships with her aides, however that manifests. She's still in there somewhere and we all know it. Each of us reaching out in different ways. Allowing myself to not know everything is such a relief.
My mother has a lot of 'cherished stuff' too. Last year, when she decided to sell her condo, I packed a lot of it up so the condo looked more open and big. It was during the months that it was all packed up that I finally felt like I could breathe. Once she decided to take it off the market, I unpacked all of it and put it back. Thankfully, Mom has seemingly given up trips to craft shows and antique shops, which at least cuts down significantly on the new additions.
My mum has passed but I remember having to recalibrate in Nov 2023 (she died in Jan 25) when I realised that I'd slipped into this mode after more than a decade of caring where I inadvertently started to take her independence away, I even used this term 'Parenting a Parent' which I hate saying, but it was slow progression from caring to parenting without realising. I know cause I wrote a blog at the time when I caught myself and to help I asked myself these questions, which I think might be helpful for your community as well.
- Do I give mum time to answer or express her feelings when I’m busy with daily life cooking, cleaning etc?
- Are my expectations too low? Just because mum’s mobility has suffered, it doesn’t mean that I can’t engage her in helping me e.g chopping or sorting
- Am I making assumptions? I found this with the musical group she’s joined. I thought that she would never be interested in it, but I was wrong. She may not know the songs, but she does feel the camaraderie in the group.
- Did you correct yourself – Tiredness does really play a part in the way we interact with our loved ones; fuses get lit a lot easier when you’re not rested. It’s important to correct yourself when you see yourself parenting vs caring. Small steps, because it’s not going to all change overnight, especially when you’re overtired, mistakes will still happen. Just make peace with that.
- Do you recognise that dementia is progressing? Making changes isn’t a bad thing especially in the way I interact with mum, but I do need to recognise that mum’s dementia has changed, she isn’t the same as she was a week ago, and instead of letting frustrations get the better of me, stop and a take a moment to adjust my behaviour.
Khadra, I love this! Your example of being thoughtful about how you can best honor your mum's dignity is huge. And I love your self-reflection prompts to help you stay on track.
When we're exhausted and just putting one foot in front of the other, it can be easy to try to get things accomplished in the most efficient manner, which doesn't always include slowing down to give a loved one time and space to express themselves fully and enjoy what they used to enjoy.
As you say, it's a delight when you realize all they can still do, even in the midst of such a difficult disease process.
I love your points. I do try to give my mom that space to answer questions and refer people to her because often they ask me. Sometimes it’s a matter of her not hearing them.
When my mom comes over the house, I’ll have her prep appetizers in bowls. Those small acts help her feel part of the family.
I appreciate your other suggestions and will keep them in mind.
Thank you, not brilliantly written but those we my thoughts back then. It's so easy to jump in take over, finish sentences or fill in silences. i'm glad that you give your mom that space and that she have a role in your family get together, i can bet that it makes her feel a useful and loved person in the family, good luck with your caring 💜
Parenting your parent does sound horrible and just feels wrong to say. But when you find yourself correcting or redirecting in ways similar to how they raised you it gets murky. I like how you said that it’s important to remind yourself that you’re a caregiver, not a parent. This is a helpful distinction for the one you care for but also for yourself. It helps bring a little bit of clarity to an unclear situation.
I know it sounds yuck to say it, but that was thought at the time, it's being mindful as you say to not fall into these types of traps of 'parenting' rather than caring and as Victoria said in her post there so many other dynamics also at play especially if you had a fractured relationship before. I'm glad to have recognised in myself in time to correct 💜
I hear you, Kat. Thanks for sharing your questions. Dementia cruelly alters the person and our interactions. It seems like, in the middle of everything, the blog helped you "catch yourself and gave you the space to identify the changes in your care-relationship.
Journaling has helped me a lot, it's not always comfortable though. What gave you comfort as these changes were happening? Releasing thoughts on the page?
Journaling has been my Pause Place throughout my mom's journey. I have a daily journal practice, which encompasses all I do. It's part of who I am and what I teach, because of the healing benefits I experienced.
Journaling involves so much. It's that landing space when my heart is breaking over how frail and confused my mom has become. It's a tracking to note her weight changes, doctor appointments, and to do's.
It's especially the space where I can fume and let out my frustration with family members. This allows me to vent but also see how my communication or actions impact the situation.
I always say that Journaling saves marriages, because sometimes I just can't say the same thing over and over again to my husband. My journal opens me up, holds me when I'm down, and clarifies what matters.
I agree. I have so many journals of my own but it’s a habit I inherited from my mum. She left me all of hers. I haven’t managed to read through them yet. Echoes of Memory became a journaling space to help me process the changes Dad went through, but there is nothing like holding a journal in one hand, a pen in the other and letting it all spew out onto the page!
Definitely, it’s those slow changes that you don’t notice. Like you I used to write in my diary every day but you know how things go with diaries, changes were small at the beginning that I stopped & started to write weekly and sharing some of those thoughts They definitely helped me reflect each month on changes and it helped to have other caregivers, like here in your Eldercare series, share their own thoughts and learnings. Yes, writing was a saviour for me, whether they were shared or not, it was just a way to get it out of my system and keep myself in check. I’m glad that journaling helped you too!
Journaling/writing in a diary can be so therapeutic! I do it in fits and starts. Honestly, having a Substack has helped me a lot, because I've told my subscribers that I'll show up weekly, and that means I've committed to myself to process parts of my experience every week. And of course not all of it ends up published. I guess it's like tricking myself into more consistent journaling.
That's exactly what I did with my blog, promised my readers a weekly update, kept up withit mostly, and now I have all those pieces to look back on - i'd forgotten about thinking of mum in this way until I read this Eldercare community network piece. Keep doing it you'll thank yourself later and it helps so much getting it out of you and sometimes getting some brilliant feedback.💜
Yes -- sometimes when I look back at posts I wrote in the midst of particularly challenging times, I am amazed at the lessons I was learning ... and then I get to relearn them again. :)
There were countless recalibrations I went through when we were caring for my Dad, probably because once recalibrated, things would shift again.
Our rollercoaster was twisty and fraught. So one of my first personal recalibrations was to try to adjust expectations of myself and my ability to control or predict outcomes.
Less on if I do xyz then abc....and more focus on here and now actions. Less about trying to hold tightly and trying to control, more about agility and responsiveness.
You can collapse and expand comments by clicking next to the name of a person
One recalibration for me has been to schedule a fun thing first. We get stuck in caregiver mode and then you lose energy. Creating new memories or having a little craft time are important, too.
One thing I like to do is bundle my time. What u mean is this— I can leave Dad alone for a few hours during the day. So, for example, if I need two hours for errands I’ll tell him I’ll be home in three. Then I take that extra hour to do something for myself.
That is a great tip! Also, why is it so hard to tell parents the truth; “I need a little time for myself?” I struggle with that more than seems necessary!
It has always been hard to ask for help in our family. I grew up seeing my mom doing everything--from raising a family with four kids, cooking, cleaning, caring for her mom and sister and going to nursing school at 40.
She never complained or asked for help.
For a long time I considered it being weak to ask for help. If my mom did it, why couldn't I do all I was doing and take care of her.
For the past three years, since her fall and I have taken on many of her responsibilities, I didn't say anything because I didn't want her to feel like she's a burden. My body has broken down multiple times in the first two years, so my siblings had to take on more.
Now I have made clear boundaries for myself and I have recently explained to my mom how I schedule my life around her and when she refuses the care and safety we have worked so hard to maintain, it impacts everyone. It makes it harder for me to do my job and spend time with her.
I think she understood because she at least allows the caregiver to come now.
I understand this tendency so well. My dad was also very capable and always busy. He instilled a strong work ethic in me, but I can get caught up in the doing sometimes and feel like I do the majority in our household. I’m glad your mum has begun to accept help, and also realise she needs it.
I’m glad you were able to set boundaries and get support from your siblings. That’s so important. I hope you are able to have some quality time for you.
Thank you. I definitely have quality time and take care of myself a lot better than I did about a year and a half ago.
I don’t think we always realize that when we refuse help we actually make it harder for others. This is especially true as we age. Good for you for being honest with your mom and setting those boundaries. That’s how we keep going.
I know for myself, it’s because I feel selfish even though I know that I’m not. I think I feel that way because I know that Dad doesn’t have that luxury. I know that’s not my fault, and I do everything I can to help him maintain as much independence and normalcy as possible, but those feelings are still there. But I take that time because I also know that it helps me stay healthy so that I can be there for him.
Really love this. Before starting on the work of care, before you’ve exhausted your energies to think of yourself - arrange something fun for yourself (and spouse of 28 years!) so you have something to look forward to!
I love this, and you’re so right! We need to keep the fun in our lives for self-preservation, and for our loved ones…
Having that flexibility is key as is releasing control. I try to come to each situation as it is and know that no matter how much I prepare, it doesn't go the way I imagine.
Isn't it always the way, you just allow yourself the room to make mistakes and keep going x
In the moment. In this moment. No, this one. Now this one. Now this....
That’s an important mind shift for any caregiver. Thanks for sharing.
Hi friends, I wanted to share that Adrian Chung, Julia Yarbough and I will be hosting a Substack live Monday, June 1st from 3-3:45 PDT on the emotional and practical aspects of caregiving from afar. If you are free to join, we’d welcome commentary and ideas from this amazing group of wise individuals! We hope to have a lively conversation in the chat! Cheers!
https://open.substack.com/live-stream/222655?
Thank you @Victoria for this opportunity to feel like the voice of the caregiver has value. For me it’s been a journey of 14 years caring for my mother-in-law who has dementia and my father-in-law who had an early onset of Alzheimer’s. He has now passed away but caring for Mom continues. As beautiful a journey this is, it takes its toll. I think my major moment of recalibration was when I started my newsletter here on Substack “Contemplations” which essentially gave me a space to offload my thoughts and along with it release all the negative energy or stress that I was feeling. It’s been therapy for me. Through Contemplations I started my series of Dementia Diaries in which I have tried to depict how the compromised mind functions. These diaries come from what we go through with Mom. Writing it down helps alleviate the frustration and in fact helps sort through the mess and find answers and meaning. It has been my escape when I can’t physically get away. However, caregiving cannot be done alone. Support is always needed. I have surrounded myself with people that can give me the support I need. Whether it’s someone lending an ear, sharing a cup of tea, indulging me with a discussion of a good read, or accompanying me for a swim…I am blessed to have this posse of people who give me the break I need. I take time off to recalibrate and when I am back an hour later, a day later or whenever, I come back stronger with more love and care to give.
Hi Tahia, it's good to see you here. You're very welcome, every voice has value and it feels good to create this space for us.
I'm glad to hear you have your posse of support and that your articles have been a release for you. You've reminded me of the breaks I had when we were caring for Dad: a walk to the gym, 20mins on the treadmill and walk back home... kept me going. Moving was a way to metabolise the stress. A physical recalibration to keep me sane.
Thanks for sharing!
Thanks so much @Victoria for inviting me to participate! It feels very timely as this week, I returned from visiting Mum after she had a fall that put her in hospital. Thankfully, she's alright but we've had to spend time recalibrating how she lives and the type of support she needs.
I know it is a journey for her - I've found it too easy to focus on the care, the decisions, and the actions - but it is equally important for me to put myself in her shoes as she lives through the limitations of her health. It has meant that some changes have taken longer to put in place than I'd like, but we're getting there.
We talked at length about finding companion care to help when she goes out and navigates the chaotic streets of the city. When earlier conversations were along the lines of "I don't need care, you can't lock me up at home!", they've evolved into "I suppose someone being with me will give me confidence to go out and do all things I want."
What previously was a source of resistance she has now recognized will enable her to keep doing what she wants - I just wish it didn't take a fall to prompt a change in mindset. But I have to acknowledge that this is her journey, more than anyone's, and how she responds to her changing health situation is of her choosing.
I'm a fervent believer that Mum's autonomy and ultimate decision-making authority are crucial to navigating the challenges of aging, even if I try to influence the direction. But it means living with the consequences of those decisions - both for her and me.
@Julia Yarbough @Kirsten Mau @Jeremy Mohler @DebbieF
I’m just reading through every comment in order this morning. I’ve been working on a huge project and just skimming, so my apologies.
Adrian, you’re in good company here.
I’m a firm believer in protecting their autonomy and dignity. That comes first.
But as others have shared, it’s a dance, and they get overwhelmed with the amount of information and decisions that have to be made.
One thing I do is to tell Dad about something a “friend” of mine did or something her parent is doing. There is no such person, and you can decide how you feel about that (I think of it like that imaginary friend so many kids have), but it often works when Dad needs to do something that he doesn’t want to do. I just casually throw out the comment, then mention it again in a day or two. After three or four times of doing this, Dad will bring it up like it’s his idea. It doesn’t work every time, but it does work.
I’ll also add that while I want to protect his autonomy as much as possible, I will step in if he’s making a harmful choice.
A friend of mine's mother is also going through similar circumstances like my mom and so I have brought up her journey. My mother is a nurse and worked in a memory care facility so she knows what this journey entails. I think that has made it harder to approach subjects, because of her knowledge.
When she gives advice about it and then the same situation comes up for her, I feel like she's already processed some of it in her mind.
Yet, she still is quite determined to remain in her own apartment. I learned from a dementia care class to say, "We will do everything we can to respect your wishes as long as you (and us) are safe." This has defused situations very often.
It's such a hard balance to care for her, make sure she is safe, provide that autonomy, and take care of myself.
Helps to be able to voice this and read what others are doing.
Thanks for sharing this, Janine. SO true. It also helps when it's the doctor or medic who frames the "safety" and "needs" . This can help distinguish between what our parents wish and want versus what treatment and support they need to be safe. e.g. re-ablement in a rehab facility instead of discharge to home.
exactly. It's so important and helpful for the doctor to be on the same page and have the language.
This is great advice: I learned from a dementia care class to say, "We will do everything we can to respect your wishes as long as you (and us) are safe." This has defused situations very often. Thank you for sharing.
That’s a good one. I can use that this week as I attempt to negotiate hiring caregiver I know they need but they don’t want.
Kirsten,
That is exactly what I said to have a caregiver come in. My mother will only allow someone in once a week for two hours! She needs so much more but she won't allow it. That's where her agency and decision making comes in and I leave it as it is knowing that I have done the best I can.
For now it's OK. We're managing but eventually I will bring up her safety again.
I think an interesting topic would be hiring caregivers and how absolutely difficult it is to find someone and keep them! I have some tips!
That sounds like a good article!
I have two amazing women that I would be lost without. They're private pay and if I could pay them $50/hr, I would. But I'm very liberal with time off and sending them home early. One has been with us five years, the other is coming up on two. I have been through divorces and moves and heartbreak with these two and I'm glad to be there for them because otherwise, this house would be a crime scene...
Kirsten, that sounds somewhat loaded as a discussion - in the way you've written it. I don't know the backstory but it sounds like there's a tug-of-war. If the subject is sensitive for them emotions are likely to run high.
The bottom line will always come down to "what will the caregiver actually do", and that might be easier to deal with in terms of specifics rather than negotiating with the concept of a caregiver.
You could start small e.g. cleaning floors and making tea - while also asking the caregiver to watch over your parents. Of course, I've no idea about your parent's needs and medical situation so things may be more advanced. Identifying specific tasks the carer can do to help your parents maintain their routine and independence, the way they like it, is a good starting point. Start small, build the relationship and trust - also because you may cycle through a few carers before you find a good one(s)
Pls ignore all that if it doesn't make sense for you/them.
NB. hiring a paid carer in UK is a big investment in time and coordination and not a once and done process, plus not always the same person. (https://www.carermentor.com/p/how-do-i-get-care-support-in-the)
It is loaded for sure. Focusing on “tasks not time” is good advice I have heard before and I’m glad you reminded of that!
I just read this and said above that caregiver tips would be a helpful discussion. Too long to write here but definitely something to write about.
Thanks for your insights, Victoria.
....and it's okay if you feel frustrated, really stressed, or angry about anything during the process of enabling your Mum's independence, Adrian. I just wanted to say that because it's easy to mute our own feelings when we're focused on their needs, and the actions of the care. Maria wrote a deeply resonant prompt for the "Caregiving as a Parent" discussion (May 1st) I think everyone we can all relate to her words: https://mmesser.substack.com/p/holding-both-when-more-than-one-truth?r=a9y7d&utm_campaign=post-expanded-share&utm_medium=web
I love how Sarah said, "you are building trust while providing care -- and that is quite a dance" - SO true! I think that's why the phrase "Tango-ing and tangling" popped into my head when I was writing the prompt...who leads when, on the front foot or tangled up
You may know the work-related quote "Change moves at the speed of trust" by Steven Covey...meaning trust is an accelerator or enables more confident change as a team (my interpretation)...even if you get a little tangled, you can figure out how to hold onto each other in that dance frame.
Yes! Trust is so important and coming to my mom with love, compassion, and patience.
Thank you, I really appreciate this perspective.
For Mum and I, it’s definitely been a long-term dance. Over the years, trust has grown along the way as we’ve navigated her care together. There has always been a back-and-forth, both as her care and health needs have evolved but as mine have with career, home and location - the continual calibration as one might say.
One thing I’ve learned is that some shifts, especially around accepting support, really have to come from within her. But I hope she knows that she will always have my encouragement and support. I can try create the conditions for change, but I've learnt not to accelerate it beyond what she’s ready for.
Finding that balance between when to lean in and when to step back is an ongoing aspect of caregiving that I think I can always improve on.
When we take everything away, including their ability to choose and make decisions, we take away their power and purpose. It’s not good for us or them.
Leaning in and stepping back sums it up perfectly. It is a dance, for sure. I’m cheering you on as I read your comments.
With Dad, I always wanted to keep his dignity intact. It sounds old fashioned, I know, but that’s who he was. I had a strong desire to protect that. I’m not going to lie, at the end, my role did become parental because the Alzheimer’s had reduced his mental capacity to that of a young child, but I didn’t let that change how I spoke to him, or treated him.
It’s hard to know whether we are doing it the ‘right’ way or not. That’s why these forums are so helpful. My focus was on keeping Dad comfortable and at peace, the best I could.
I’m so glad, that in your case, trust has grown between you as you navigate this caregiving space. You are by her side, and yet, you give her the space to shift from within. A fine example of the caregiver’s dance.
Absolutely, Sally, "keeping his dignity intact" was important in our care of Dad too - not old-fashioned at all!
It's part of respecting and protecting their personhood - that's a phrase I came across when I was frustrated with people talking ' at Dad' rather than with him. We were lucky to have some doctors who treated him holistically rather than piecemeal - but Dad's conditions: heart failure, Atrial Fib, rheumatoid arthritis, vascular dementia and bladder cancer, meant Mum and I had to constantly and proactively champion his wishes and needs. Each emergency was a trial.
In the moment, we make the best decisions we can, and I think the way we give care is a function of their needs and health, which can shift over time. You did an amazingly given everything you went through, those last moments with music must have been beauitful for him.
Sorry I've needed to step away from the discussion for a few days while we're spending time with family. I've been skimming and look forward to savoring so many wonderful perspectives - like yours here, Victoria: "in the moment, we make the best decisions we can." I couldn't agree more. I think at any given moment, we're all doing the best we can with the information we have at the time. Which is something I often remind former caregivers of when their fully-rested and less-frazzled selves are looking back with regret about this or that, including myself. :)
It’s so important to be realistic, feel the feels, and not be too hard on ourselves.
Yup - we're just trying to our best for our loved ones and ourselves!
Adrian, I’m sorry to hear your mum is having increasing health challenges. Unfortunately, as you say, sometimes it takes something scary like a fall to help everyone re-evaluate and get on the same page.
And I love, love, love this: “I'm a fervent believer that Mum's autonomy and ultimate decision-making authority are crucial to navigating the challenges of aging, even if I try to influence the direction.”
I felt the same in my caregiving journey. Since my mom had no cognitive impairment, she was able to make her own decisions, and I reminded her frequently that I was just the helper and she was the one in charge.
Thanks Sue, I'm glad you also took a similar approach with preserving your Mom's independence - we can't expect parents to make decisions for themselves and take responsibility if we put them in positions of total dependence! Curiously, how did you navigate situations where she was headed down a path you didn't think was in her best interests? How much were you able to disagree without damaging the relationship?
Thanks, Adrian. Honestly, I always thought supporting her autonomy was in her best interest, regardless of the decision she made. Mostly. :) Of course, there were times when I might not agree, which is when we talked through the situation and what the options and potential outcomes might be. She was a wise, strong, independent woman with deep faith, and in the end, it was always her choice. Ensuring that was the case was hugely important to us both. Thanks for asking!
Thanks for sharing more about your approach! As caregivers I think we live with a lot of concern and fear for our loved ones - that the world is scary, they can’t do this or that without being at risk, or the ramifications if they came into harms way.
But we run the risk of underestimating them and removing their agency, which shifts the conversation from being about enablement to censorship. And I don’t think our parents want us to censor them.
I’ve seen caregivers take a more dictatorial approach which I really do not agree with. It ended up disempowering their loved one and breeding resentment. It takes a lot of judgement, familiarity, and context to calibrate correctly - and what works today may not apply tomorrow.
Adrian, I'm sorry I haven't had time to jump in the last few days as we're spending time with family. While I may not be able to respond to all your comments, I just want to thank you for sharing such rich and wise perspectives. And to say how blessed your mum is to have a such a caregiver as you. :)
No worries - we're all busy people, I already appreciate all the interest and support you've shown! I hope you're also having quality time with your family ;)
Same for me, Sue, talking and discussing options is so important.
Adrian - if I may add to Sue's thoughts. Most of the decisions we went through were treatment/medical. I researched, provided information, thoughts on scenarios, and gave my opinion/recommendation to enable their best-informed decision, with/without their impaired cognition. BUT then there's a saturation point - when they can't take more discussion or the decision is done - period. At that point, I would figure out the best next steps and make sure they were aware of what I was doing.
These days, I can feel the exact moment when it's been enough or too much for Mum. I just make sure I'm 100% clear on what she wants, summarise and start actioning, keeping her looped in.
(FYI, in the UK there's the Mental Capacity Act 2005 https://www.nhs.uk/social-care-and-support/making-decisions-for-someone-else/mental-capacity-act/ Powers of Attorney for health and welfare can only be used after loss of mental capacity. which is what makes things hard in emergency situations)
Relationships evolve, no matter what we may want parents to do, because it's their life and decisions to make. We may not think it's in their best interests, but they know their best interests the best....until they can't express them. Then we have to do that for them, even when, we may not agree with their wishes but have to execute them.
I'm sensing you're holding the tension of wanting to sustain your mother's independence AND worried about her safety. Sorry to say, it's a constant tension in caregiving.
If you feel comfortable sharing, let us know if you have a specific situation or worry that we can offer thoughts on. I hope some of what I shared helped.
It is great that you have established a pattern with your Mum around collecting information, sharing, coming to a decision, and acting on it. That familiarity with knowing the limits of your Mum’s ability to absorb before shutting down is important because information overload can be dangerously demoralizing - analysis paralysis, if you will. Particularly, decisions you highlight around treatment can become very heavy quickly.
It is generally clear when Mum is reaching her limit as she expresses her frustration and agitation - and if she isn’t ready to make a decision right in the moment, we can always revisit it later after she’s had more time to reflect and process. I’ve found she generally is good about thinking things through on her own time and coming back with a fresh perspective.
From a legal and incapacitation perspective, there is a push here to have power of attorney and advanced medical directives in place to be clear about how a care recipient should be treated in the even they’re incapacitated. I can’t remember coming across them when I was in the UK but they often get discussed here in US care circles.
Thanks Adrian. It sounds like you've established a meaningful dynamic with your Mum too.
Yes, absolutely, they're called Lasting Powers of Attorney here in the UK - 2 types: Finance and Property, and Health and Wellbeing. Additionally, there are a few things we did - Emergency Health Care Plans, and for Dad we had a Do Not Resuscitate and wishes written. As well as the Will and Letter of Wishes.
Yes! What a great mindset during a difficult situation. It shows how much you love and respect your mom.
Adrian, it sounds like you are building trust while providing care -- and that is quite a dance. I love what you shared here: "When earlier conversations were along the lines of 'I don't need care, you can't lock me up at home!', they've evolved into 'I suppose someone being with me will give me confidence to go out and do all things I want.'" What a win for you both. Well done.
Thank you Sarah, it has been a journey and for the most part Mum has embraced the lifestyle changes she needs to make. However, accepting constraints on how one lives one life can be a challenge, though I'm glad we have gotten to a place where she can see help as an enabler and not a constraint.
Thanks Khadra, yes! With Mom, the focus was on helping her integrate her belongings and life to be assured that our home was now her home. With Tina, the focus was on trying to do the same with our stuff without disrupting her environment too much.
There were micro and macro recalibrations for us. My mother, who I was taking care of, faced a deadly cancer. She had to daily recalibrate expectations for herself and I had to witness those and find ways to support her even when I disagreed. I remember thinking one day: She’s going to go from a fully functioning adult month by month, week by week, day by day to start losing all faculties. I have to let go of any expectations that I believe how this is going to roll out. Of course I stumbled so many times along the way. So each day, I’d reset my expectations. My mother was becoming the child and I was becoming her mother.
I don't think there's any way to prepare for this, or any way to explain it to someone who hasn't gone through it. With childrearing (full transparency, I'm childless) you get more freedom as they become more independent. It's expected and there are standards and milestone and measurements to refer to. There is an entire industry to support new moms and the advertising industry especially markets to you. But you don't see ads for bed pads, hell, the corner grocery doesn't carry adult diapers. There is a whole learning curve of how to keep your LO safe without infantilizing them. Without support like this Substack, and some great Facebook groups and Caring Kind (was NYC Alzheimers Assoc) I'd have been sunk. This could have turned into a crime scene, with yellow tape blocking the doorway to my apt, now the site of a murder /suicide. just kidding.but really.
yes it’s a daily recalibration isn’t it and that allows us to space to go with the changes. So much emotion with it as well.
This is so relatable. The letting go and stumbling along the way. I feel this is a constant thing. I often catch myself shift as I care for my mom. It is constant.
A moment? Many moments. As one person said, when I looked back at my records and journals I realized I’d been doing this a lot longer than I took credit for. Today it’s cohabitating and hands on, all decisions are on my shoulders, but more than a decade ago I took over management of her finances and utilities. I have to recalibrate on a regular basis. Little things like giving myself permission to do nothing for a whole weekend, despite lots of tempting invitations. I was exhausted and chose rest over community. We’re lucky enough to have an aide here 8 hours/day every day. When one needs a day off or calls in sick, I was taking the day over. Now I will, if I have to, but I’ve chosen to spend money that would eventually be my inheritance to make life easier now—I find a substitute. Mom is batty as hell with advanced dementia, but really healthy. Realizing this could go on for a lot longer than the eight years of living together, I’ve looked at memory care facilities. I haven’t done it, I’d rather spend the money on home care. But either way, I’ve shifted my needs back a little closer to center.
I’ve taken pottery classes, figure drawing, nature illustration. Picked up an old camera I adore. Carry a sketch book. Do not read more than 25 pages of a book if it doesn’t grab me. Learned how to use contouring makeup (it helps a little). Got a couple of cats because I needed something that responded to my affection as Mom rarely does anymore.
That might have been the biggest recalibration. The hardest. Understanding that I could no longer get what I needed from the person who has been my primary emotional support my entire life. That slipped away. I’m still working on recalibrating my needs on that front.
Jodi, I love how you’re caring for yourself as you’re caring for your mom. Obviously, you learned long ago that for many caregivers, this journey is a marathon, not a sprint - so pacing is critical if we want to be able to continue doing it.
And bravo on choosing to hire some help! For both Mom and Tina, we had a few wonderful private-hire caregivers who could just take over to allow my husband and me to get out and take care of ourselves for a bit.
I also love how you’ve kept up with your own interests. Sometimes we need to put our lives on hold if our loved one is having some type of health crisis, but otherwise I’ve found it’s so important to keep moving ahead with my own life, too.
Hugs, Jodi. Good for you....yes, many many moments.
Omg that hit home, I'm so glad that you recalibrated and got so much out for yourself as result, but yes it hard to have someone who supported and loved you without conditions not be there in the same way. My heart goes out to you x
Looking back at my journals, I’ve realized that I’ve been taking care of my mom since my dad died 28 years ago. It was more about taking her to do activities but at 57, she was still working, mobile, even if she had some health issues.
About 10 years ago, she began having balance issues. She had retired and I (along with my three siblings) would come and help her with household needs.
When she had a car accident about a couple years after, she stopped driving, I took her to appointments and took more care of her. Having a family, running a business, and caring for my mom pulled me in many ways. I’m a fix-it and get things done type of person, so that’s how I ‘handled’ my mom. I say ‘handled’ because looking back I’m sure that’s how it felt to her. We’d butt heads and I couldn’t understand why she didn’t see that doing it my way would make it easier for her–actually me.
When she began experiencing cognitive decline, she pushed even harder to maintain her independence and agency.
In 2023, she had a bad fall and had to have major surgery. That changed everything. It took this, my health failing from the stress and doing things my way, and her decline for me to change things.
My recalibration was caring for mom through mom’s lens, not through mine. I wasn’t there to fix things, I was there to care for her, be her advocate, and show her the dignity that she deserved.
It didn’t mean I stopped caring for myself. I actually put boundaries into place that opened space for me to be with her as she is. To accept that no matter where she is in her life and health journey, it’s important to her to have her agency, voice, and choices in how she lives.
It may not always be the easiest way for me and my siblings, but I am OK in the knowledge that I do the best for my mom on the path that she has chosen.
She’s safe, happy, and secure. That’s all that I can ask for. That shift in my mindset did wonders for our relationship.
28 years no wonder you didn't realise the impact of stress until later, but you did and now as you say you're looking through mum's lens now, and you have your boundaries that give her the space to be herself, and that's wonderful to read. I'm so glad that you found that place and the impact on your relationships.
I also recently discovered I'd been taking responsibility for Mom for longer than I thought. Honestly, it goes back to before my father died in 2000.
I'm the same. It floored me when I reread my journals and that's what amazing about journaling too. That reflection but also those AHA moments and how our lives shift over time.
I cared for my father in my parents' home from 2018 until his passing in 2024, and I now care for my mother, who is probably in the early stages of her own dementia journey, but keeps me more busy with health issues not related to dementia. I live in central Ohio.
My moment of recalibration wasn't gradual — it happened in an emergency room. My father's blood pressure had reached a systolic of over 220, and when the ER doctor asked who was monitoring his medications, my mother and I looked at each other blankly. Nobody was.
I drove straight to the drugstore, bought a pill minder, gathered every medication in the house, and took over from that moment forward. I stopped being a family member who was helping out and became a caregiver — not because I planned it, but because nobody else was going to do it.
That pill minder changed everything. It was the moment I understood that waiting for someone else to step up wasn't a strategy. It taught me to act rather than assume, and I've carried that into every decision I've made as a caregiver since.
That's the surprising thing sometimes in families, that you're the one that realises that you have to step and do something, rather than assume someone else will. Hopefully you had family discussion later to share the load but as my mum always said you were there for a reason.
My brothers both thanked me profusely for moving in - which I took then, and know now for sure was - better you than me so please don't ever stop.
Act rather than assume. Great advice!
To me, caregiving is a constant recalibration! That's especially true as a loved one's health declines and each day seems to bring a new reality that requires agility and pivot-on-a-dime adaptation. Of course, I helped many families with this process during my years in hospice, but with my own family caregiving, our two very different scenarios required lots of recalibration.
After hip fractures six months apart, my mom sold her place and moved in with my husband and me. She lived with us almost 10 years and for the last four years of her life, needed lots of help and hands-on care. But for my mother-in-law (Tina), we sold our place and moved in with her. We cared for her for about five years. One had dementia, while the other didn't. In both cases, there were lots of adjustments both we and they had to make. Mom stepped into Jesus's arms in 2015, and Tina did the same in January. My husband and I were blessed to get to care for both of our moms for many years.
I could pick many recalibration moments, but one thing that sticks out for me is the shift that takes place when I see a loved one declining significantly. Since I'm a nurse, it really bugs me when I need to provide care and don't have all the supplies I need within easy reach. So for both Mom and Tina, when care moved from assisting with tasks to needing to dive in and perform those tasks, everything got rearranged. The bedroom, the bedside, the bathroom, the closet.
There's so much to do when you're providing hands-on-care for someone, and it's a big help if hunting-for-what-you-need isn't yet another task on your list.
I also wanted to add that now I have space for me, I’m not sure what to do with it! It’s funny how that happens. We get so used to putting our lives on hold, that when we finally get a chance to live it, we don’t know where to begin!
It takes time. You’ll find your way through.
I can imagine. Like a new mother whose only subject of conversation is her babies, all I have to talk about is Mom, her care, and everything that involves. My life has gotten very small, but my heart has gotten softer, larger. I guess you just let it evolve, this new kind of empty nest syndrome. Grief has no timeline. And no specific shape. I see myself feeling very lost as well. Hugs to you Sally.
I’ve really enjoyed scrolling through these conversations. A lot of helpful insights and wisdom here.
Yesterday, we had Dad’s Celebration of Life. He graduated to heaven at the end of February. As I reflect on these last couple of years, I believe recalibration has been a constant throughout. Just as we recalibrate into a different season, it switches up again. I got used to my focus being on him, and keeping the household afloat. Now, it’s time to allow myself to think about other things. I have found that difficult. Dad’s Alzheimer’s was so consuming, especially in the last six months. I’m still in that stage of appreciating the small things, of being able to sleep through the night again, as well as take a bit of time for me.
❤️🙏
Thanks so much for sharing how you're doing, Sally. There's such a season of adjustment after a loved one dies who has been the center of all our attention and efforts for so long. In the months right after my mom died - even after years of thinking I'd be prepared - I was raw, vulnerable, and often stunned that she was no longer there. And all that even in the midst of my gratitude that she had finally made it safely Home. It took some time for me to get my feet back under me again. Be gentle with yourself, my friend. And please know you're in my prayers. Big hug.
Thank you, dear Sue. As always, your comments bring so much comfort. 🙏
Hugs, Sally.
I remember those first few nights of more sleep. More than a couple of hours in one go and deeper... it takes time to drop the gears of sleeping with an ear and eye open.
Even though we pivoted straight to cancer treatment, getting some sleep was a deep relief and weird for me.
I've heard a couple of descriptions by former carers of the time immediately after their loved one dies. This one has remained with me the most: suddenly, all the strong scaffolding that we constructed for them, that formed every minute of every day, has gone, as well as our person. No wonder why you may feel lost or untethered. Having a small ritual in the morning can help, whatever feels comfortable. xo
That is so true. There is a slow rebuilding of self that takes place afterwards. Each season of caregiving is fraught with its own set of challenges. Post-caregiving is a season of limbo. I almost feel guilty for being able to make plans again. Perhaps that’s why I haven’t made many yet. As with every season of caregiving, we must give ourselves grace. It’s not an easy thing to navigate, and not something most of us choose to do.
That’s a lot. They are lucky they had you both.
Thank you, Kirsten. ❤️
SO true, Sue! Specific living areas become primed, and those areas become smaller. There's also a proximity and visibility-thing. The most important things needed to be visible and in easy reach for Dad, because 'out of sight, out of mind.' So there was organising for me to do hands-on care and prioritising 'to hand' things for him.
Victoria, yes! I love your point about the areas getting smaller. I've watched that so much over the years. As a person's health declines and mobility gets worse, not only does their broader world shrink, so does the immediate environment around them so they can reach their stuff. And for those with dementia, the same is true, since visual cues are so important.
You're right, its not just one calibration it goes throughout your caregiving journey. Your experience of having your mum live with you and then you move into your mother-in-law's place must've been so much harder, changing your whole home situation for a loved one. And I totally understand when you're doing hands on care, how useful it is to be so organised and have everything ready to go!
Sue, you definitely have had a lot of experience in caregiving.
I totally agree with you on being prepared.
As per Victoria's wonderful suggestion, I have a bag that's filled with all my mom needs on our trips to the doctor. It goes on the back of her wheelchair. It's so much easier to have one bag and know it's set.
Those bags are lifesavers for you and them!
Yes!
Thanks, Janine - and yes, good for you! Being prepared makes such a huge difference! There’s enough stress even when you are. :)
Exactly!
So many recalibrations ... but here's a relatively simple one that has made a big difference for my dad and me:
In short, Amazon.
Here's the longer version:
For the 32 years prior to moving into a retirement community, my parents lived less than a five-minute drive from a supermarket. Then, when they moved in 2023, their retirement community ended up being even closer to a different branch of the same supermarket. What luck!
From what I could tell, Dad visited the grocery almost daily. Some days he visited it more than once. I think it had become a hobby -- an easy way to get out of the house for a bit, do a little walkabout, say hi to neighbors and familiar staff ...
But it also affected his shopping habits. Why make a long list when you can just pop over and pick up items, one by one or two by two?
After experiencing a stroke late in 2023, my dad gave up driving. And that meant giving up his grocery store habit ... or, more accurately, turning it over to me.
I think for a while I just went with it. He'd give me a short list over the phone or email, and I'd pick up the items on my way to visit him. After a while, I asked him to give me a weekly list, which worked fairly well ... until we started slipping back into our earlier habit.
Note: I do not share my dad's fondness for grocery shopping. I felt my resentment building, and I know he was waiting for items longer than he liked.
Finally, I pointed out to him how many of the items on his lists he could get on Amazon, which he already subscribed to. Kitty litter, personal products, various foods, etc. Not only would this cut down on my tours of the grocery store, but it would give him a greater sense of independence and control over when his items would arrive.
Now, a few months later, there are just a few things I pick up at the grocery store for my dad every few weeks. I can manage this!
The upshot is, I've pared back the frequency of my trips to the grocery store -- and that opens up more time for me to spend actually visiting with my dad. <3
Love this anecdote on many levels, Sarah - for your Dad's independence, for your sanity, and for how you and we learn it's not a once-and-done-and-dusted thing..(sigh)
I don't know how we'd have coped without deliveries TBH. Deliveries just make my life so much easier. I even found a place that can send Chinese frozen Char Siu Bao to us.
Love this string! My mom loves to go to the grocery store- she calls it her “social time” but it drives me crazy. I do not enjoy most grocery shopping, chatting with all the strangers, taking 5 minutes to decide on jam! But when I realized it was her social time, I tried to recalibrate it for myself. When I am home, I do online pick up. When I am there, I have to shift the way I see it. It’s time to chat, engage the brain and have a little walkabout. It’s not easy but I try.
That shift in mindset is important for our peace of mind. There are several things that Dad does that drive me crazy. But he has a reason for all of them. When I discover his reason, I roll my eyes less. 🙂
I'm glad you've found benefits in the world of deliveries too, Victoria.
And I should add, it's definitely a good day when the relatively manageable issue of grocery shopping is the concern that comes to mind!
I’ve had a similar experience with my dad, but it was a daily trip to the gas station for coffee and the newspaper. Then COVID hit, and he stayed inside. The grocery stores stayed open, so I went every Sunday and got his paper. Once everything opened up he started going again, but only once during the week and on Sunday. Then he stopped driving about a year later. I go every Sunday morning and get his paper. I don’t mind him once a week, but that’s the boundary.
Reading this causes me to reflect on how important it is to honor our people's old habits in a sustainable way. Yes.
Sarah, time for visiting is so important! That's always been the hardest. My mom lives in an apartment and so each time I go see her, there's always so much to do. We'd barely spend time together doing something fun.
Now my siblings and I all have specific jobs so it's not on one person and we also have a caregiver who comes in once a week to help.
That time together is precious.
Exactly, Janine -- I'd rather be visiting than shopping any day!
Well done with divvying up the tasks with your siblings. So important, even when they're far away ... My brother lives about a 9-hour drive away, but we've delegated him several helpful responsibilities that he can carry out from afar. It's a tremendous help, and it keeps him included in decision-making, etc.
Yes, it helps all around. My sister who was my tag team person recently moved away so that has been tough. But we connect often and work together on medical. She handles medication refills and orders food as well.
That’s great that she’s still involved. It sounds like you have a good relationship.
She's my best friend so that was really hard. It was a difficult decision for her to move away which is a whole other topic!
My mom has a lot of cherished stuff. A lot. One day I glimpsed the future and realized it was going to be my job to take care of it all. This is not a decluttering project. This is an emotionally-fraught, years long process of storytelling, negotiation, guilt and trips to Goodwill.
Now, layer on health issues, cognitive issues, estate issues, and all the rest.
I’m a caregiver for aging parents. Trying to live my own life filled with its own challenges and opportunities.
So, I started writing about this to cope, process and find the humor in it all and help others on a similar journey.
Radical acceptance. This has been my goal over the last several months as I try let go of all the things my parents refuse to address. It’s not easy!
Looking forward to learning from this community.
Radical acceptance - takes on so many forms. My Mum's cancer precluded any major sorting of stuff. We did most of my dad's clothes after he passed. Those bags were sorted and resorted to give away, gift...Now, we do bits, a little here and there. Our acceptance is not doing any big sorting. The majority of my things are in storage, but already went through major triages via 18 relocations across 10 countries.
Wow!! That’s a lot of moving.
Kirsten, I completely get what you mean. My mom moved from a 4-bedroom ranch with a full basement packed with possessions to a townhouse, then finally to an apartment. She had a garage filled with items and it took years to get her to relinquish any of it.
I'd take photos of items for her, help her decide if she wanted to donate or give to a family member, and slowly clear the garage.
These items have emotional memories tied to them and it's also about agency. Fear of having your things taken away.
My mom and I are going through her clothes now. She hasn't worn in years and don't fit her. It takes a lot of patience and we do a little at a time. She's going through papers which I tell her I appreciate because then she can decide what she can remove or keep.
It has sparked a clearing journey for my own home because I don't want my son to have to deal with it. Boy do I struggle to let go of things so I have a lot of compassion for my mom!
I look forward to your lessons. I moved my mom to memory care and her house is just sitting….. I know she isn’t going home and I don’t want to wait to start clearing but its overwhelming…
I hear all of that. I have had the same experience with my dad-especially helping him with his taxes this year. It’s in these small moments of struggling to sort through papers that you realize they’re not quite processing what’s going on. Then there’s fear of throwing the wrong thing out so you won’t throw anything out. I have to sneak things into the trash sometimes.
I’ve been slowly doing this with my dad over time. I know that we don’t always have that luxury, but take advantage of it if you do. By doing a little bit at a time (e.g., one drawer) he’s let go of much more than if I’d tried to make him do it all at once.
Reading this made me think of how difficult it was for Dad to sort through things when I moved in. I was going to be taking over his office, which he wasn't using at all anymore, but he still had a lot of stuff in there. As it turned out, sorting was beyond his comprehension and I ended up doing it for him. He tried so hard, but it was the first time I think I recognized where he was in his decline then. It was still early in his dementia, so on the surface, he seemed okay, but these small signs told me I was where I needed to be...
Reading this I realized, another big moment of recalibration was when Mom moved into assisted living and I didn't have to be so hands on. She blossomed and started having a life of her own again. Honestly, letting go of control a little, I felt a somewhat left behind, but we both had more freedom and a better relationship because of it.
I've tried to do the same now that we're living together, to allow her her own relationships with her aides, however that manifests. She's still in there somewhere and we all know it. Each of us reaching out in different ways. Allowing myself to not know everything is such a relief.
My mother has a lot of 'cherished stuff' too. Last year, when she decided to sell her condo, I packed a lot of it up so the condo looked more open and big. It was during the months that it was all packed up that I finally felt like I could breathe. Once she decided to take it off the market, I unpacked all of it and put it back. Thankfully, Mom has seemingly given up trips to craft shows and antique shops, which at least cuts down significantly on the new additions.
My mum has passed but I remember having to recalibrate in Nov 2023 (she died in Jan 25) when I realised that I'd slipped into this mode after more than a decade of caring where I inadvertently started to take her independence away, I even used this term 'Parenting a Parent' which I hate saying, but it was slow progression from caring to parenting without realising. I know cause I wrote a blog at the time when I caught myself and to help I asked myself these questions, which I think might be helpful for your community as well.
- Do I give mum time to answer or express her feelings when I’m busy with daily life cooking, cleaning etc?
- Are my expectations too low? Just because mum’s mobility has suffered, it doesn’t mean that I can’t engage her in helping me e.g chopping or sorting
- Am I making assumptions? I found this with the musical group she’s joined. I thought that she would never be interested in it, but I was wrong. She may not know the songs, but she does feel the camaraderie in the group.
- Did you correct yourself – Tiredness does really play a part in the way we interact with our loved ones; fuses get lit a lot easier when you’re not rested. It’s important to correct yourself when you see yourself parenting vs caring. Small steps, because it’s not going to all change overnight, especially when you’re overtired, mistakes will still happen. Just make peace with that.
- Do you recognise that dementia is progressing? Making changes isn’t a bad thing especially in the way I interact with mum, but I do need to recognise that mum’s dementia has changed, she isn’t the same as she was a week ago, and instead of letting frustrations get the better of me, stop and a take a moment to adjust my behaviour.
Khadra, I love this! Your example of being thoughtful about how you can best honor your mum's dignity is huge. And I love your self-reflection prompts to help you stay on track.
When we're exhausted and just putting one foot in front of the other, it can be easy to try to get things accomplished in the most efficient manner, which doesn't always include slowing down to give a loved one time and space to express themselves fully and enjoy what they used to enjoy.
As you say, it's a delight when you realize all they can still do, even in the midst of such a difficult disease process.
Thank you so much, this post from Victoria and the Eldercare Community Network reminded me that i'd been guilty of doing this.
Sharing our stories grows awareness. I've already learned so much!
Same same. These stories show how much care each person has taken to care for someone
I love your points. I do try to give my mom that space to answer questions and refer people to her because often they ask me. Sometimes it’s a matter of her not hearing them.
When my mom comes over the house, I’ll have her prep appetizers in bowls. Those small acts help her feel part of the family.
I appreciate your other suggestions and will keep them in mind.
Thank you, not brilliantly written but those we my thoughts back then. It's so easy to jump in take over, finish sentences or fill in silences. i'm glad that you give your mom that space and that she have a role in your family get together, i can bet that it makes her feel a useful and loved person in the family, good luck with your caring 💜
When I see her smile and recognize that youthful vibrance, it makes me glad that I give her that space.
Parenting your parent does sound horrible and just feels wrong to say. But when you find yourself correcting or redirecting in ways similar to how they raised you it gets murky. I like how you said that it’s important to remind yourself that you’re a caregiver, not a parent. This is a helpful distinction for the one you care for but also for yourself. It helps bring a little bit of clarity to an unclear situation.
I know it sounds yuck to say it, but that was thought at the time, it's being mindful as you say to not fall into these types of traps of 'parenting' rather than caring and as Victoria said in her post there so many other dynamics also at play especially if you had a fractured relationship before. I'm glad to have recognised in myself in time to correct 💜
I hear you, Kat. Thanks for sharing your questions. Dementia cruelly alters the person and our interactions. It seems like, in the middle of everything, the blog helped you "catch yourself and gave you the space to identify the changes in your care-relationship.
Journaling has helped me a lot, it's not always comfortable though. What gave you comfort as these changes were happening? Releasing thoughts on the page?
Journaling has been my Pause Place throughout my mom's journey. I have a daily journal practice, which encompasses all I do. It's part of who I am and what I teach, because of the healing benefits I experienced.
Journaling involves so much. It's that landing space when my heart is breaking over how frail and confused my mom has become. It's a tracking to note her weight changes, doctor appointments, and to do's.
It's especially the space where I can fume and let out my frustration with family members. This allows me to vent but also see how my communication or actions impact the situation.
I always say that Journaling saves marriages, because sometimes I just can't say the same thing over and over again to my husband. My journal opens me up, holds me when I'm down, and clarifies what matters.
I agree. I have so many journals of my own but it’s a habit I inherited from my mum. She left me all of hers. I haven’t managed to read through them yet. Echoes of Memory became a journaling space to help me process the changes Dad went through, but there is nothing like holding a journal in one hand, a pen in the other and letting it all spew out onto the page!
Definitely, it’s those slow changes that you don’t notice. Like you I used to write in my diary every day but you know how things go with diaries, changes were small at the beginning that I stopped & started to write weekly and sharing some of those thoughts They definitely helped me reflect each month on changes and it helped to have other caregivers, like here in your Eldercare series, share their own thoughts and learnings. Yes, writing was a saviour for me, whether they were shared or not, it was just a way to get it out of my system and keep myself in check. I’m glad that journaling helped you too!
Journaling/writing in a diary can be so therapeutic! I do it in fits and starts. Honestly, having a Substack has helped me a lot, because I've told my subscribers that I'll show up weekly, and that means I've committed to myself to process parts of my experience every week. And of course not all of it ends up published. I guess it's like tricking myself into more consistent journaling.
That's exactly what I did with my blog, promised my readers a weekly update, kept up withit mostly, and now I have all those pieces to look back on - i'd forgotten about thinking of mum in this way until I read this Eldercare community network piece. Keep doing it you'll thank yourself later and it helps so much getting it out of you and sometimes getting some brilliant feedback.💜
Yes -- sometimes when I look back at posts I wrote in the midst of particularly challenging times, I am amazed at the lessons I was learning ... and then I get to relearn them again. :)