One Resource, Two Insights, Three Ideas.
June and July 2024
Dear Carer Mentor Community, and ‘Hello!’ to all you lovely new subscribers!!
This article on the Carer Mentor homepage offers one resource, two insights and three tips/ ideas to try and help you in your everyday caregiving. It draws on ideas from discussions, comments on articles and my own experience. Caregivers sharing with caregivers.
This article was updated during June and July 2024.
[You may have realised that each week, I update the same article so that everyone knows where to find it, and the list grows.
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July 27
After a small prompt from
I thought I’d share a few tips and resources about wheelchair use based on my experience.One Resource..well actually two this week:
SCOPE: the disability equality charity in England and Wales.
provide practical information and emotional support when it's most needed
campaign relentlessly to create a fairer society.
‘We are Disabled people working for an inclusive society.
Disability Rights UK is the UK’s leading organisation led by, run by, and working for Disabled people.
We work with Disabled People’s Organisations and Governments across the UK to influence regional and national change for better rights, benefits, quality of life and economic opportunities for Disabled people.’
Two Insights
We didn’t get a wheelchair for Dad to use himself, so the rear and front wheels are the same size, a ‘transit wheelchair’. Here’s a useful Which Guide
The wheelchair was a blessing because Dad could use it like a walker and sit in it when he couldn’t go further. In the early days, he thought he could walk a lot further than he was able to. Those were scary days for me, wondering how we’d get home. This is why I share these tips with friends. Some handy phrases:
‘It’s just in case we need it’.
‘This means you can sit down anytime you need to’.
Three Tips/Ideas
all sorts of bags and pouches can be fixed at the back of the wheelchair. (e.g. Amazon). I prefer to use a small bag/backpack that I carry
Beware that you’ll need a waterproof poncho/blanket to cover the user and around the chair in the rain. Otherwise, the seat and their bottom will get wet. (A coat may not be big enough.)
Two videos that I found useful from the NHS (Leeds Teaching Hospitals NHS Trust)
If we were at a kerb with no ramp, I would go down backwards with the wheelchair to ensure there was no tipping forward in our Transit Wheelchair. I would go forward up the kerb.
July 19
One Resource
I highly recommend delving into the free self-compassion resources that Kristin Neff generously shares on her website. Click the image to go to her site.
Two Insights
Breathing exercises offer many physical and mental health benefits. Discover three deep breathing techniques you can use to feel calmer.
Whether you’re living with a heart condition, caring for someone who has one, or are concerned about having a heart problem in the future, it’s normal to experience stress.
Breathing exercises can be a powerful way to manage that stress.
Mentally shifting gears or creating a breathing space can be one of the most difficult things to do.
If you’re feeling overwhelmed, frustrated, or stressed, I recommend giving yourself permission to leave the room and create a physical space to breathe first.
You can even make an excuse for needing a drink or something to distract from what’s happening. Where you can try to short-circuit transient emotions.
We’re the ones who can bend, who need to pivot and exercise agility. It may feel unfair. Often, it is. There is a grey area when a parent is less aware, hearing or eyesight changes or cognitive ability to process and remember things changes.
The issue is that we cannot pinpoint a specific moment or switch point. So, be prepared to step out of the discussion, reassess and recalibrate your response.
If your best friend stood alongside you, watching what was happening, how would they narrate the events? Take a breath and be kind to yourself.
Three Tips/Ideas
MENO COOL Scarf Cooling Gel Neck WRAP
I bought two of these, and they work! From Amazon:
The Meno Cool Scarf is a Simple & Natural but Effective Cooling Aid for Hot Flushes, Power Surges or Tropical Moments!
Completely Natural: The Process of Evaporation Means No Refrigeration Or Freezing is Required.
Amazing Cooling Effect: When worn, the retained water in the crystal gel evaporates and draws away body heat from the carotid arteries.
Simple to Use: Just soak the scarf in water until the crystals have swelled completely, towel dry and use. Re-activate at any time by a short re-soak.
Dry Cooling Comfort: The special crystals in the back of the scarf when soaked in water expand and stay cold for up to two days without feeling wet.
Pulse Oximeter (Amazon) and How to use a Pulse Oximeter at home video. Normal Oxygen Saturation 95-100%
NHS (published in 2022) How to use a Pulse Oximeter and a handy tracking sheet.
July 12
One Resource
The importance of a good printer. I invested in a new printer just after Dad passed and before Mum's surgeries started. So, it was indispensable in terms of probate administration and printing copies of Mum's medical information for our 'go-bags' (see the June 15 and June 10th additions below)
Key criteria:
Auto-feeder tray: This allows you to dump a whole pile of papers to copy multiple times. Even if you have to sort the pages out afterwards, this is SO much easier.
Scanner: to scan doctor’s letters to your computer to keep as a reference or send to other doctors
Copy in colour as well as black and white. The red highlighted priority information on the Medical Information ‘cheat sheets’ stood out.
Copy onto both sides of a piece of paper to reduce paper and the weight of document packs that need to be sent by snail mail to financial institutions.
Lastly, I chose to get an HP Printer because they have a wireless connection and a discounted ink program. This makes my life easier because ink cartridges get sent to me automatically AND they recycle old cartridges. HP Instant Ink
Two Insights
Parcels: Many well-meaning friends and family will send flowers and fresh food gifts, such as cheese, biscuits, and cakes from Marks and Spencer and John Lewis. If you don't know these shops, check out the gifts that can be delivered, but please don’t send them! Based on years of caregiving, may I suggest gift vouchers, sharing an Amazon wish list, or a donation to the charity of your choice? These don’t require people to be at home. Flowers are lovely AND a chore to arrange.
You'll thank me later for avoiding missed parcels, having to go to the post office to get them, or finding that mystery drop-off point where the photo was taken.
The worst time was when cheese and a cake were drowned in a soggy cardboard mess and ruined. A generous thought can turn into a stressful exchange of texts with the sender when you have MANY other things happening. It can also spell a lot of wasted money from someone who meant well but didn't know what they didn't know for something you can't eat.
Music playlists:
post 'What Are We Even Doing Here If We Aren't Dancing? a serious question from a deeply unserious person reminded me of a key thought I wanted to share. Her thoughts resonate a lot with me in this piece. Even when I'm writing, I may be swaying to a piece of classical music or bobbing while I listen to the cool vibe of a song.
When I have a few days to myself, I always like to have a music playlist cued up to take a long walk or, as
calls it, 'Rulking' (Run-walk-running).I rely heavily on Spotify to curate these playlists based on my listening because I can't waste precious time editing different lists right now! (I do have a ‘new discoveries’ playlist where I store recommendations from,
though!)Spotify GEM alert: This will blow your mind if you don’t know about it. In the search window, type in 115 bpm or 120 bpm. BPM stands for beats per minute. This is the perfect speed to rulk at around 4-5 mph.
Alternatively,
on the desktop Spotify app, go to Your Library.
Click on playlists to filter for playlists only.
You'll see 'By you' or CLICK 'By Spotify'. There’s a whole library curated for you!
On the iPhone app, click the magnifying glass to search and click 'Made for you'. There are all sorts of mixes. The 'DJ' option is great, but it gets old if you need to skip to the next one to find something that matches your mood.
The curated lists fuel my spirit each day!
Three Tips/Ideas
Dense liquid honey is a great alternative to throat lozenges/cough sweets. A teaspoon is enough to coat the throat. Even after a drink of water, it still coats the throat and helps with a dry cough.
If the person you're caring for dozes off to sleep with their mouth open, their throat dries quickly.
Honey is sometimes better than lozenges/sweets to avoid a risk of choking when they fall asleep
A V-shaped pillow is a good idea for anyone who is coughing or tends to cough. This could be due to some accumulation of fluid in the lungs, a chest infection, or oedema (fluid) due to impaired heart function.
normal pillows will slide apart if you put them in a V shape, or they may be too soft
I used to bend the ends of the inverted V so it would sit more easily and added normal pillows to embrace Dad. He'd slide down a bit as he fell asleep, but this way, he could drift off to sleep instead of coughing and fluid building up.
Here's a video. I didn't buy this but you can see how the end sections support and embrace the user.
"The V Shaped Pillow is ideal to give you extra support when sitting up in bed or while sitting in a chair. With three individually filled sections, with extra support in the centre section, the V shaped Pillow provides support where you need it. It can also be used on your lap for working, feeding your baby or reading."
10 Best Sleeping Upright Pillow In The UK published 12 July 2024 I think the batwing pillow looks the most interesting as it has all round support. However, I've not purchased any of these. Take a look at the different types
July 6 2024
One Resource
If you want more information about a medicine, here are some of the biggest drug databases online. As you may know, your country's government has a regulatory authority that is part of the process of assessing and approving drug use.
Here is a resource that has mapped health authorities:Asphalion: 'Global Regulatory Agencies Directory: In a globally connected healthcare environment, understanding the various pharmaceutical regulatory agencies is of paramount importance. Our directory provides a comprehensive guide to these bodies around the world.
Online directories of medications
Electronic Medicines Compendium (UK and EU). 'The electronic medicines compendium (emc) contains up to date, easily accessible information about medicines licensed for use in the UK. emc has more than 14,000 documents, all of which have been checked and approved by either the UK or European government agencies which license medicines. These agencies are the UK Medicines and Healthcare Products Regulatory Agency (MHRA) and the European Medicines Agency (EMA).'
Drug Product Database online query (By Health Canada). Search the Drug Product Database (DPD) to find drugs authorized for sale by Health Canada.
US Food and Drug Administration Drugs@FDA: FDA-Approved Drugs. Drugs@FDA includes information about drugs, including biological products, approved for human use in the United States (see FAQ), but does not include information about FDA-approved products regulated by the Center for Biologics Evaluation and Research (for example, vaccines, allergenic products, blood and blood products, plasma derivatives, cellular and gene therapy products).FDA Vaccines, Blood and Biologics
Drugs.com (US). You can search for a drug, a condition. There's a useful 'Pill identifier', Drug interactions checker and Drug side effects search option.
Australian Register of Therapeutic Goods (By the Australian Government. Ministry of Health and Aged Care. Therapeutic Goods Administration (TGA)). Search the ARTG by name, ID or sponsor. Search results include product name and formulation details, sponsor (company) and manufacturer details, Consumer Medicines Information (CMI) and Product Information (PI). Not all CMI and PI documents are available.
New Zealand Universal list of medicines (By the New Zealand Ministry of Health) 'The New Zealand Universal List of Medicines is the standard source of commonly-used information about medicines in New Zealand. It is the primary naming and coding database for medicines in the NZ health sector, and is used in most medical and pharmacy software.'
Two Insights
When you or your loved one is prescribed a new drug, in addition to checking how the drug needs to be taken e.g. with/without food, number of pills, the dosage. It's good to ask when do most people take the drug, at night or in the morning. There are some drugs that dampen the appetite or cause drowsiness, so taking them at night is better.
While it may seem like a good idea to mash up a pill so it can be swallowed more easily, it's better to ask your doctor for an alternative form of the drug or another drug. Some formulations can dissolve under the tongue, come in liquid form, or be injected. If you have any issues about how to take the drug, always tell your doctor. Drugs are produced and regulated to a specific formula and way of working for safety reasons.
Three Tips/Ideas
Amazon has a section called 'Mobility and Daily Living Aids' - it's classified under healthcare in the UK shop. If you look at the left column you'll see various subcategories of aids.
Did you know that if you or the person you're caring for has a chronic long term condition or illness, your purchase is exempt from VAT in the UK? VAT Exemption
We used Ability Superstore (UK mobility aids)
June 28 2024
One Resource
I recommend getting a toilet mapping app on your phone. There are lots of different ones. The ones that have disabled toilets mapped are good
Disabled accessible travel: Accessaloo
"The accessible toilet project began in January 2014 as a response to my personal experiences of living life around the toilet – typically the probability of whether I could access one or not, at any given time. It dictated whether I left my home, how and where I worked and pretty much every aspect of life.
I have a progressive impairment, Muscular Dystrophy, which gradually weakens muscles as time goes on. Muscle weakness has also affected my bowel and bladder. I constantly have to adjust to different toilet requirements and ways of getting to, on and off the toilet. I now have to use a hoist as I can no longer stand or push with my arms."
Two Insights about Home on-screen entertainment.
In the early days I remember orchestrating an afternoon movie-time, with some popcorn or cake and Dad could doze or watch as much as he wanted. We could pause the movie & restart it as often as we wanted. The criteria I used:
Under 2 hours, preferably closer to 1.5 hours
Avoid lots of flashbacks, time travel or complicated storylines
Feel good, uplifting, underdog themes are good
A concert is a good alternative
Formulaic TV series, where every episode is a finite story but with the same characters. It may be ‘unchallenging’ for us, but that offers a reassuring ‘red thread’ that Dad could follow.
Here are some movies, TV series and concert ideas that my Dad watched:
Films/TV
New Start Trek movies with Chris Pine
Old Star Trek movies & The Next Generation TV series
TV series -
Concerts
Three Ideas / Tips
This week's three tips are tools/gadgets that make everyday things a little easier. These help anyone sustain their independence for longer. They can reduce frustrating, unsafe attempts to pick things up or issues getting dressed. There are many tools/gadgets out there.
A grabber stick with a magnet and rotating end.
This avoids the need to bend down to pick things up, i.e decreases the risk of a fall
Helpful for pickup up keys that have landed in a tight spot.
A sock putter-oner. If you've ever pulled a back muscle, you know how difficult it can be to wear socks. This makes things much easier
Button hook: Small buttons on shirts and blouses can be tricky to fasten. This makes it easier
June 22 2024
One Resource:
A Caregiver Organiser
in How to Reduce Stress During Caregiving. Journaling to Track and Organize by
(Thanks, Janine!). She’s shared some prompts for journaling and generously shared an excel template of how she has tracked information. This is a quote & link to the excel file:This excel file is generic so you can input medications/doctors/hospital visits for yourself or anyone you’re caring for. Again, it’s what works for me but refer back to Victoria @carermentor article for her tips and suggestions. There are many ideas in the comments. It inspired me to write this article. I thank her for all the insights and this community for creating this beautiful space!
Two Insights:
‘Caresplaining’ is a term I came up with in a Carers Online Forum to describe how everyone will try to explain how ‘we should be’ (should is a swear word in my book)- caring for our loved one. ‘Mansplaining’ is more accepted as a ‘no-no’ than Caresplaining. It applies to ALL caregiving - of children or eldercare because we’re all given unwanted ideas/advice. Watch out for innocent questions disguised as ‘why don’t you do it this way’.
‘Hero-ing’ is when someone wants to be the one who solves everything and makes it all better (whether they do or not doesn’t matter). They want to be seen to be the hero of the situation.
Beware— with both of these situations, you will encounter a Catch-22: ‘damned if you do and don’t if you don’t.’ Many of us have battled the dilemma of whether to implement suggestions or not. We guilt ourselves for disliking the kind-hearted, well-intentioned advice.
The sad but undeniable facts are that only you, the caregiver, have the full scope and depth of what works/doesn’t for your loved one (child, parent, friend, partner). It’s likely that driven by love, you’ve explored numerous solutions and discarded them.
The empathetic ones will suggest things but allow you to ignore thoughts/ideas as necessary. The ideas from people who are caresplaining, hero-ing or simply don't listen, those ideas can go in one ear and out the other. 'Thank you, I respect and appreciate your idea, I'll take that into consideration.' My boundary line is set, not just for them, but also to remind myself to not waste precious energy or time.
Tell us about your experience of Caresplaining or Hero'ing in the Community Discussion Thread.
Three Ideas/Tips:
A thermos cup
a large grip handle, for those with arthritic gnarled hands, or who have difficulty gripping smooth cups/glasses
slide-close, not a twist or difficult clip or knob
a large stable base, to reduce spills
not too tall - like a mug, to avoid knocking it over
A transparent water bottle to measure fluid intake
Bed socks with rubber grips on the sole.
Poor circulation can make feet cold at night
The grips can offer extra reassurance in bathrooms
Pyjama bottoms can be tucked into socks if they're a bit long.
June 15 2024
ONE Resource:
Flexa - if you’re looking for more flexible work environment.
Flexa is founded by Molly and Maurice. They discovered a severe lack of flexible jobs after Molly was diagnosed with an autoimmune disease, which led to her needing more flexibility whilst she works. - Flexa About page
TWO Insights/ Food for Thought:
There is a phenomenon called ‘Sundowning’. It’s well-known and associated with dementia sufferers. Here are tips to help manage through/prevent the effects.
The Multidisciplinary Team Approach to cancer care in the UK.
Usually, if you have been diagnosed with cancer, a team of health professionals will work together to plan the treatment that is best for you. This is called a multidisciplinary team (MDT).
The MDT looks at national treatment guidelines or the latest evidence for the type of cancer you have. - Macmillan Cancer Support
KEYNOTE: In our area, The MDT for a specific group of cancer is held once a week. If you have a scan or test, it’s worth asking the doctor who referred you for the test about when the readout will be sent to the MDT. Think about timing: getting an appointment, the test itself, the test result interpretations, relaying results to the MDT, and receiving the results with recommendations from the hospital.
We’ve been blessed with my parent's care, but this is also because we learnt a lot about communication, e.g. closing gaps and checking doctors had the scan results in hand (when we were dealing with two different hospitals). This is even more important in monitoring and controlling cancer.
THREE Ideas / Practical tips
To complement the ‘Go Bag’ for your loved one/patient, here’s what’s in my go-bag for ambulance runs. This was essential when I was caring for Dad.
Several tips that all go together.
The Caregiver's Go-Bag - rucksack for the emergency ambulance run.
Patient Documents: Essential reference documents
List medications (dose and frequency of administration), including allergies to medication or latex (dressings/plasters). Five copies
Medical history summary - highest priority conditions, last investigations, incl. CT, PET, MRI, endoscopy, colonoscopy, biopsy, and blood tests (haemoglobin, blood clotting factors, cancer markers). Five copies
Name of primary care physician/GP and surgery practice
Powerpack to recharge your phone: One of the best buys. Check your phone's compatibility.
Bottle of water, protein bar. These are in any bag I have when we go out for appointments.
Tissues, wet wipes, small towel/flannel.
Depending on your family member's needs: incontinence pad, underwear, wet wipes.
Plastic trash bags for dirty clothes/waste
Cotton washable scarf that can double as a shawl/blanket/pillow
Face mask and hand sanitiser. (COVID is still around, and higher in hospitals where it gets treated).
June 10 2024
ONE Resource:
This week is Carers Week UK: ‘Putting Carers on the Map’. From the Website:
‘The No choice but to care report, published on the first day of Carers Week 2024 found that 62% of those who are currently providing or those who have previously provided unpaid care said that they had no choice in taking on the role because no other care options were available – this is around 10 million adults.
While caring can be rewarding, the impact of providing unpaid care has been more negative than positive for all areas current and former unpaid carers were asked about, particularly for mental health (63%), physical health (53%), Job and ability to work (48%) and finances and savings (47%). The negative impacts as a result of caring were also felt most strongly by those who had no choice but to take on an unpaid caring role as well as women and those aged 45-54.’
TWO Insights/ Food for Thought:
The UK’s lack of people and funding offering care support in communities results in a postcode lottery of services. Availability trumps questions of quality.
There is a Catch-22 in play: the postcode lottery of services results in families stringing what support they can together whilst working. An income of >£151/week disqualifies many from Carers Allowance even if they care for someone for 35 hours a week. Many people do not see themselves as carers, and ‘sleepwalk’ into caring. Local authorities do not proactively identify carers, and thus, underestimate the needs of communities and receive less central funding. Mobilise is one company identifying & supporting carers and simultaneously works with councils.
THREE Ideas / Practical Tips
Have a ‘Go Bag’ ready in case of an emergency hospital trip.
Pyjamas and 1 change of clothes including a cardigan as one arm may need to be out for injections/a cannula.
Cotton dressing gown bed socks with rubber under soles are useful.
Small towel & Washbag: small liquid soap, flannel, small travel-size toothpaste, toothbrush, headphones, earplugs (noisy on a ward), pen, post-its, phone charger.
A half-empty tissue box to act as a holder for e.g. spectacles on the bed table.
Small bag of current medications NOT full pack, as we rarely get them back.
Fortified drinks for when loved ones can’t eat much. They have a dense consistency but can work in a little porridge/cereal. e.g. Fortisips, Ensure, Nutricia’s Nutilis. They’re available on Amazon or ask your pharmacy.
If you have cancer and life in the UK, connect with Maggie’s Centres ‘Everyone’s home for cancer care’ The centres have been an oasis of support for me. Each centre is associated with a hospital and the staff have the lowdown of services in each community. I highly recommend reading about the founder Maggie Keswick Jencks.
Please ‘❤️’ LIKE the article.
Hey Victoria, hope you're well - thank you for sharing this great set of resources - the stuff on self-compassion is super interesting and something I haven't considered before. Will give it a go and let you know how I found it!
Ordered the V-pillow and button hook. Will let you know how they work!
Now I need a pouch/water bottle holder for the back of a wheelchair! Whenever we go somewhere, my mom's lap is piled with her stuff!