Dad's vascular dementia, mixed with his fear of the hospital, frustration and stubbornness, could exacerbate a situation, especially if he'd had a fall.
In hindsight, I realise the first year caring for Dad was more torturous because we were trying to find our footing. At the time, in my old corporate speak- my language at the time- it felt like the old storming, forming, norming ...but the reality was much deeper than just group dynamics. My mother had to take on what Dad usually did, Dad had to let go of being able to reason or control the situation, and I had to apply a lot of comms skills to de-escalate or navigate us through.
That period of recalibration was especially tough. But I'd never want them to just do what I say. Even when he was in pain trying to walk around the house, trying to move his arms and legs during rheumatoid arthritis flare-ups, he kept saying that if he didn't move, he'd seize up. Wrapping him up safely in his recliner would've bubble-wrapped my heart, given me a selfish comfort, but not helped his spirit. So, we silently aligned on his need to move around, and I'd be thereif something happened. (Which it did - falls downstairs, on the stairs, upstairs, with canes, despite grab handles etc etc.) We did our best, in a kind of painful agreement. Other times were harder.
Finding that balance between keeping them safe and letting them still “be” is so hard. My dad falls because he doesn’t move enough. He prefers his recliner. His body pays the price with stiffness. He wouldn’t be able to walk far even if he did move more, but his stubbornness does make it worse sometimes. But I can’t force him to be more active. So I just do the best I can with what we have.
I know this very well. My mom likes walks but doesn’t like the exercises lol. 😆 so would sit alllll day and want to go on walks but not always strong enough to. It feels like an endless cycle. Lots of motivation, playing music and joking around to get her moving !
Victoria, what a beautiful testament to your love for your dad. It can be so difficult to step back and support a loved one's autonomy when you see them struggling but declining help. That's a journey that takes incredible patience, but hopefully eventually results in them accepting it.
Thanks, Sue. Eventually, we did our little conga-dance: me supporting him from behind to go to the loo. Once we found our rhythm in those early days, it was easier to support him later.
Thank you Sue for sharing your experience. I could so relate to your mum not listening to you but she would if it came from somewhere else. My mum was exactly the same with medication, using a walker, and so many other things. I think losing her fierce independence was a big factor, being able to refuse one thing I think helped her feel in control, and you begin to learn to pick your battles over time, don't you?
Thanks, Khadra. Yes, if we flip the scenario and put ourselves in our loved ones shoes, it’s easy to see how hard it would be to watch our control over situations trickling away. And totally, picking your battles is key! :)
Yes, while my nursing experience - especially my time with hospice - was such a blessing in caring for my mom, I think it also made it more difficult for me to let go and let others help with her care.
I loved her so much and had been caring for her for so long (we were a team and had a ball!) that I wanted to be able to provide the solutions we needed for any given situation.
Of course, that's wasn't realistic - which I repeatedly realized. We all need help, and it's essential to build a team of support so we can be there for the long haul for our loved ones.
I hear you Sue. Yes, it's great if we can curate a care team
Here, the availability of agency support is difficult, and people keep changing due to high demand, high vacancies, etc. So realistically in certain parts of the UK hands-on support is often hampered by availability and accessibility - before even discussing financing and quality. We were blessed that Mum and I could tag team.
You did really well, and every choice enabled her care. She was so blessed having you to advocate for the best possible care for her, including yourself xo
Thanks so much for your kind words, Victoria. Yes, there are always needs that fall through the cracks of established systems, which is why we still needed to hire private caregivers to help and provide respite. I know that’s not always possible, since finances can get really tight for families in these situations.
And you have and are doing really well too, my friend. xo
Hi- I’m Kirsten and my SS is all about coping with aging parents and finding insight and levity to cope with this zany, emotional roller coaster ride.
On the topic of taking advice, one of my favorite podcast guests, Julie, a home care LCSW of 20 years put it this way: “Often it’s just the 7th voice that gets through. You may have suggested it, a friend may have, a doctor may have, YouTube may have. But for some reason, it took that many mentions to sink in. Try to be grateful the message got through, rather than feeling like they just didn’t listen to you.” So when my mom finally embraces something I’ve been saying for years, I try my best to say “Great idea!” It’s hard, but I try.
There's science behind that. I was a trainer in Corporate America for many years, and I mentored new trainers. I always told them that you need to teach the most important points seven times, seven different ways, then make sure they implement that training for seven days.
Kirsten, I love this! And you're so right. It can take a lot of repetition for that seed to take root. That's so awesome that you're able to give your parents the dignity of having a "Great idea! " :)
That is so true. And isn’t it true of us sometimes? I don’t always accept sound advice from my husband. Sometimes I take it better from a friend. Sometimes it’s easier to swallow from someone who is not so close.
Sally, I'm with you, friend! I can be the same way. I don't even want to think about all my caregiver(s) will need to put up with when I'm the one in need of care! :)
Your first year sounds particularly challenging. I love how you mentioned bubble wrapping your heart. There were so many times I wanted to bubble wrap Dad, but I had to respect his wants, needs and desires. Sadly, those were whittled down to almost nothing near the end.
I didn’t quite have the same dynamic as you, mainly because Mum had already gone, but also because Dad became extremely obedient. For some reason, he didn’t really question me. He trusted me from the day he was diagnosed. He would often say, “Whatever you think is best.”
He did have his moments regarding the wheelie bins. They had caused him severe stress for quite a few years. It’s only in the last two years that I have realised what a struggle it is for old people to get their wheelie bins out in the wee hours of the morning in all weathers, especially when they are full to the brim. It’s so easy for them to experience a fall. Eventually Dad relinquished the control of the bins, in fact he forgot about them and we did not remind him. We started taking them out when he was asleep and keeping one curtain closed so that he couldn’t see them.
Other than that, Dad was as good as gold.
Something you wrote at the beginning really struck me. You mentioned whether we get the opportunity to experience parent-child moments with them. Dad sometimes forgot I was his daughter, but then I would remind him and his eyes would sparkle. Most of the time, it was the way he looked at me. He never lost that parental loving gaze. And so often he would remind me to be careful. He often reminded my sons to take good care of me too. Those moments I hold so dear now. He’s been gone for just over three months and I’m still in the in between, some days I feel him so close and other days it feels like he’s been gone a long time.
I sometimes beat myself up about it, but I did what I could, and most importantly, I loved him through it all, and he felt that. He loved me right back. That’s really all we have at the end of the day.
Sally, your relationship with your dad was so beautiful. That's a testament not only to what it was like during the time he needed help, but the foundation you laid with each other throughout your life. I'm so grateful you shared him and your journey together with all of us. You were a fabulous daughter. He was a fabulous dad. And I know you miss him. Big hug to you, friend.
Oh Kirsten, that made me chuckle. Wheelie bins were the bane of Dad’s existence for a while. I forgot that the terminology is so British. I’m so glad your parents finally accepted help. These are things that the younger generations do not even capture as an issue for the elderly. I thought Dad was going to roll down the driveway with them one morning at 5 am!
Anyway, it’s also funny now I look back on it. We got through it in the end!
Sally, I had to read “wheelie bins” 2x and I absolutely love that (British-?) term for them! That one little anecdote resonated deeply with me.
I have spent maybe 3 years encouraging my parents to find a better/safer way for this chore to happen. My parents refused to see the safety issue. My mom feels it’s a faux pas to have her wheelie bins out during the day. So my 90-y-o dad with vision, hearing and balance issues would wait until dark to walk them down the hill to the street. Long story short, it took a fall and bloody knees for them to finally accept some help. There’s so much more this that won’t fit here, but I spent so many hours and days on this that “trash cans” became a taboo term. I promised my husband every time I said it, I owed him $20 just to get me to stop talking about it.
Note: it took about 3-5 months but I finally learned my parents’ city provides ADA trash can service if you are determined enough to see it through. Wheelie bins from now on!
Kristen, it took me a moment to get that, too, but I loved the term "wheelie bins." My experience with Dad was similar. While he didn't wheel them out to the curb, he did take the garbage out to the bins (we call them trash bins). Then one day, a bad fall, a trip to the ER, and a concussion, and now the trash is my job alone.
The bins seem to be an issue no matter where we live. It’s really changed my perspective. It causes so much stress for them because it presents quite a bit of danger that local government doesn’t seem to understand. What about those who don’t have anyone around to help them? What do they do?
Thanks for sharing this Kirsten. An ADA trash service! Who knew? I'm going to see if that's available in our area. We have an elderly neighbor who refuses help and rattles my nerves every time I see her edging her way down the driveway with her can on a cart.
Hugs, Sally. Thanks for sharing. My Dad sometimes had a distorted idea of what he could do and saw us as his 'jailers' and 'complied' (his word) in a passive-aggressive way - that's the anosogosia and dementia mind...he said he'd be off to play golf soon. But other times he'd cry in exhaustion, sometimes. So bubble-wrapping wasn't really an option ;-)
Ahh, yes, there's always that one thing. Getting the lawn cut was my Dad's - a drama ensued.
I can imagine your Dad's loving, sparkly gaze. ❤️ I'm so glad you can treasure these potent memory moments. I had a few. Several were piercingly bittersweet.
I think those words sum it up: piercingly bittersweet. Despite the challenges, I’m so grateful I had the opportunity to care for him and be by his side. I wouldn’t change that for the world. ❤️
Dad's vascular dementia, mixed with his fear of the hospital, frustration and stubbornness, could exacerbate a situation, especially if he'd had a fall.
In hindsight, I realise the first year caring for Dad was more torturous because we were trying to find our footing. At the time, in my old corporate speak- my language at the time- it felt like the old storming, forming, norming ...but the reality was much deeper than just group dynamics. My mother had to take on what Dad usually did, Dad had to let go of being able to reason or control the situation, and I had to apply a lot of comms skills to de-escalate or navigate us through.
That period of recalibration was especially tough. But I'd never want them to just do what I say. Even when he was in pain trying to walk around the house, trying to move his arms and legs during rheumatoid arthritis flare-ups, he kept saying that if he didn't move, he'd seize up. Wrapping him up safely in his recliner would've bubble-wrapped my heart, given me a selfish comfort, but not helped his spirit. So, we silently aligned on his need to move around, and I'd be thereif something happened. (Which it did - falls downstairs, on the stairs, upstairs, with canes, despite grab handles etc etc.) We did our best, in a kind of painful agreement. Other times were harder.
Finding that balance between keeping them safe and letting them still “be” is so hard. My dad falls because he doesn’t move enough. He prefers his recliner. His body pays the price with stiffness. He wouldn’t be able to walk far even if he did move more, but his stubbornness does make it worse sometimes. But I can’t force him to be more active. So I just do the best I can with what we have.
I know this very well. My mom likes walks but doesn’t like the exercises lol. 😆 so would sit alllll day and want to go on walks but not always strong enough to. It feels like an endless cycle. Lots of motivation, playing music and joking around to get her moving !
Tina, you're doing a great job caring for your dad! As you say, doing the best you can with what you have is all any of us can do.
Thank you, Sue.
Victoria, what a beautiful testament to your love for your dad. It can be so difficult to step back and support a loved one's autonomy when you see them struggling but declining help. That's a journey that takes incredible patience, but hopefully eventually results in them accepting it.
Thanks, Sue. Eventually, we did our little conga-dance: me supporting him from behind to go to the loo. Once we found our rhythm in those early days, it was easier to support him later.
Yes, we all have to figure out what's needed to adapt. Which is a constant as our loved one's health changes.
Thank you Sue for sharing your experience. I could so relate to your mum not listening to you but she would if it came from somewhere else. My mum was exactly the same with medication, using a walker, and so many other things. I think losing her fierce independence was a big factor, being able to refuse one thing I think helped her feel in control, and you begin to learn to pick your battles over time, don't you?
Thanks, Khadra. Yes, if we flip the scenario and put ourselves in our loved ones shoes, it’s easy to see how hard it would be to watch our control over situations trickling away. And totally, picking your battles is key! :)
Let’s pray you never need it!
Sue, I was replying to your other comment but somehow ended up down here! 😳🥴
I know, these threads can getting a little squirrely!
🐿️ 🤣 PROTip - click next to the person's name to collapse sub-comments ;-)
Awesome! Thanks, Victoria!
Thanks so much, Victoria.
Yes, while my nursing experience - especially my time with hospice - was such a blessing in caring for my mom, I think it also made it more difficult for me to let go and let others help with her care.
I loved her so much and had been caring for her for so long (we were a team and had a ball!) that I wanted to be able to provide the solutions we needed for any given situation.
Of course, that's wasn't realistic - which I repeatedly realized. We all need help, and it's essential to build a team of support so we can be there for the long haul for our loved ones.
I hear you Sue. Yes, it's great if we can curate a care team
Here, the availability of agency support is difficult, and people keep changing due to high demand, high vacancies, etc. So realistically in certain parts of the UK hands-on support is often hampered by availability and accessibility - before even discussing financing and quality. We were blessed that Mum and I could tag team.
You did really well, and every choice enabled her care. She was so blessed having you to advocate for the best possible care for her, including yourself xo
Thanks so much for your kind words, Victoria. Yes, there are always needs that fall through the cracks of established systems, which is why we still needed to hire private caregivers to help and provide respite. I know that’s not always possible, since finances can get really tight for families in these situations.
And you have and are doing really well too, my friend. xo
Hi- I’m Kirsten and my SS is all about coping with aging parents and finding insight and levity to cope with this zany, emotional roller coaster ride.
On the topic of taking advice, one of my favorite podcast guests, Julie, a home care LCSW of 20 years put it this way: “Often it’s just the 7th voice that gets through. You may have suggested it, a friend may have, a doctor may have, YouTube may have. But for some reason, it took that many mentions to sink in. Try to be grateful the message got through, rather than feeling like they just didn’t listen to you.” So when my mom finally embraces something I’ve been saying for years, I try my best to say “Great idea!” It’s hard, but I try.
There's science behind that. I was a trainer in Corporate America for many years, and I mentored new trainers. I always told them that you need to teach the most important points seven times, seven different ways, then make sure they implement that training for seven days.
Love that! Makes sense!
Kirsten, I love this! And you're so right. It can take a lot of repetition for that seed to take root. That's so awesome that you're able to give your parents the dignity of having a "Great idea! " :)
That is so true. And isn’t it true of us sometimes? I don’t always accept sound advice from my husband. Sometimes I take it better from a friend. Sometimes it’s easier to swallow from someone who is not so close.
Sally, I'm with you, friend! I can be the same way. I don't even want to think about all my caregiver(s) will need to put up with when I'm the one in need of care! :)
Your first year sounds particularly challenging. I love how you mentioned bubble wrapping your heart. There were so many times I wanted to bubble wrap Dad, but I had to respect his wants, needs and desires. Sadly, those were whittled down to almost nothing near the end.
I didn’t quite have the same dynamic as you, mainly because Mum had already gone, but also because Dad became extremely obedient. For some reason, he didn’t really question me. He trusted me from the day he was diagnosed. He would often say, “Whatever you think is best.”
He did have his moments regarding the wheelie bins. They had caused him severe stress for quite a few years. It’s only in the last two years that I have realised what a struggle it is for old people to get their wheelie bins out in the wee hours of the morning in all weathers, especially when they are full to the brim. It’s so easy for them to experience a fall. Eventually Dad relinquished the control of the bins, in fact he forgot about them and we did not remind him. We started taking them out when he was asleep and keeping one curtain closed so that he couldn’t see them.
Other than that, Dad was as good as gold.
Something you wrote at the beginning really struck me. You mentioned whether we get the opportunity to experience parent-child moments with them. Dad sometimes forgot I was his daughter, but then I would remind him and his eyes would sparkle. Most of the time, it was the way he looked at me. He never lost that parental loving gaze. And so often he would remind me to be careful. He often reminded my sons to take good care of me too. Those moments I hold so dear now. He’s been gone for just over three months and I’m still in the in between, some days I feel him so close and other days it feels like he’s been gone a long time.
Sally, you took such good care of him. I love reading about the loving dynamic you had.
I sometimes beat myself up about it, but I did what I could, and most importantly, I loved him through it all, and he felt that. He loved me right back. That’s really all we have at the end of the day.
Sally, your relationship with your dad was so beautiful. That's a testament not only to what it was like during the time he needed help, but the foundation you laid with each other throughout your life. I'm so grateful you shared him and your journey together with all of us. You were a fabulous daughter. He was a fabulous dad. And I know you miss him. Big hug to you, friend.
Thank you, Sue. It was so special sharing him with everyone on here. Such a special man. As we say here, he was a true legend!
Oh Kirsten, that made me chuckle. Wheelie bins were the bane of Dad’s existence for a while. I forgot that the terminology is so British. I’m so glad your parents finally accepted help. These are things that the younger generations do not even capture as an issue for the elderly. I thought Dad was going to roll down the driveway with them one morning at 5 am!
Anyway, it’s also funny now I look back on it. We got through it in the end!
Sally, I had to read “wheelie bins” 2x and I absolutely love that (British-?) term for them! That one little anecdote resonated deeply with me.
I have spent maybe 3 years encouraging my parents to find a better/safer way for this chore to happen. My parents refused to see the safety issue. My mom feels it’s a faux pas to have her wheelie bins out during the day. So my 90-y-o dad with vision, hearing and balance issues would wait until dark to walk them down the hill to the street. Long story short, it took a fall and bloody knees for them to finally accept some help. There’s so much more this that won’t fit here, but I spent so many hours and days on this that “trash cans” became a taboo term. I promised my husband every time I said it, I owed him $20 just to get me to stop talking about it.
Note: it took about 3-5 months but I finally learned my parents’ city provides ADA trash can service if you are determined enough to see it through. Wheelie bins from now on!
Kristen, it took me a moment to get that, too, but I loved the term "wheelie bins." My experience with Dad was similar. While he didn't wheel them out to the curb, he did take the garbage out to the bins (we call them trash bins). Then one day, a bad fall, a trip to the ER, and a concussion, and now the trash is my job alone.
I’m sorry. I feel you. It’s hard when you see it coming but no one else does.
The bins seem to be an issue no matter where we live. It’s really changed my perspective. It causes so much stress for them because it presents quite a bit of danger that local government doesn’t seem to understand. What about those who don’t have anyone around to help them? What do they do?
Thanks for sharing this Kirsten. An ADA trash service! Who knew? I'm going to see if that's available in our area. We have an elderly neighbor who refuses help and rattles my nerves every time I see her edging her way down the driveway with her can on a cart.
That ADA trash service is great to know about. I wonder how common this is?
Hugs, Sally. Thanks for sharing. My Dad sometimes had a distorted idea of what he could do and saw us as his 'jailers' and 'complied' (his word) in a passive-aggressive way - that's the anosogosia and dementia mind...he said he'd be off to play golf soon. But other times he'd cry in exhaustion, sometimes. So bubble-wrapping wasn't really an option ;-)
Ahh, yes, there's always that one thing. Getting the lawn cut was my Dad's - a drama ensued.
I can imagine your Dad's loving, sparkly gaze. ❤️ I'm so glad you can treasure these potent memory moments. I had a few. Several were piercingly bittersweet.
I think those words sum it up: piercingly bittersweet. Despite the challenges, I’m so grateful I had the opportunity to care for him and be by his side. I wouldn’t change that for the world. ❤️
Me, too! Those years with my mom were precious to me. I didn't do anything for her that she wouldn't have done for me a thousand times over.
Absolutely, Sally. Same for me