Show Notes
The original essay, Lessons In Presence: On what I've learned a year on, and staying hopeful.
A fully updated list of tips for caring for elderly parents and loved ones (including those with memory loss and dementia), incorporating tips from the Life Stories community, below.
I like the idea of making this some kind of living resource, which others can add to and anyone can forward and refer to.
Please share this special episode and post with anyone who you think might find it helpful!
To whom it might help, with love, including tips from the Life Stories community:
• When reading isn’t possible or easy, help an elderly parent or loved one to get plugged in.
Offer audio versions of books or podcasts for them to listen to.
—
• Inhabit the time they’re in, at any given moment.
You have to be willing to playfully enter whatever part of their memory they are inhabiting at the moment. When we oversaw the care for my husband's grandmother, and we eventually moved her to a memory ward near us. I learned to play along to whatever role she assigned me that day. Sometimes I was her daughter or my sister-in-law. Sometimes I was the best friend in her wedding. (Having heard the story many times, I could fill in the details she didn't remember.) Sometimes I was a 3rd grader in her class.
—
• Take favourite treats on visits.
They’re a comfort and a nod to the past and memories, which you can talk about (“Remember I always gave you a Terry’s Chocolate Orange at Christmas, dad?”).
If you’re offered a chocolate/biscuit/wedge of chocolate orange, say yes! It’s one small way a loved one can get a sense that they’re treating and hosting you. (Ask me how I know, having said “no thanks” many a time, before this occurred to me).
If you’re gluten-free, as points out, grab something you can enjoy during your visit, too.
• Get arty-crafty.
When I taught art, I volunteered at an assisted living facility and brought creative activities to do with them. They often mirrored the type of activities I would do with my preschoolers. Their ages were late seventies up to 99 and many had dementia/Alzheimer’s. They loved art days with Mrs. Kelly and they would come alive! One day in particular, I brought clay so they could freely sculpt. One gentleman, in his 90’s, was so incredibly engaged and he continued to sculpt an entire little village of people. After he had finished, he broke out his harmonica and began playing a tune for all of us. This opportunity to create brought so much joy, he couldn’t contain himself. It was the sweetest moment.
—
• Hydration, hydration, hydration.
Sooo important, especially in the heat. It’s been unusually hot here in the UK, and dehydration can cause things to escalate (or, rather, deteriorate) shockingly fast in the elderly. One of the first signs of the urinary tract infections (UTIs) they are extra-prone to is an increase in confusion and, accordingly, dementia-like symptoms (who knew? We didn’t).
What can look like a sudden cognitive nosedive could be due to an undiagnosed infection, and might resolve or improve after antibiotic treatment.
(I feel like I need to insert the totally obvious disclaimer here that, with all these points, I’m very-much-not-in-any-way medically trained or placed to offer such advice - although the Italian hypochondriac mama in me likes to think otherwise. I know that, like me, you’ll always seek advice from a doctor or other qualified medical professional).
If a loved one is reluctant to drink, try adding crushed ice. Making the water refreshingly cold can be a game-changer. (I bashed up ice cubes in a trusty IKEA ziplock bag with the giant wooden potato masher we purchased years ago and I’m not sure we’ve used once.)
If you’re concerned about dehydration, ask if fluid intake is being monitored and/or if a chart is in place. And if you’re worried about a sudden increase in confusion, ask if a urine dip test can be carried out.
• Advocate for all you’re worth.
It’s all too easy to start to feel that you’re asking too many questions. Or for too much (I’ve felt both, SO MANY TIMES). You’re not. What’s helped me is doing a little research first, so I’m better able to express my concerns and be specific with doctors, nurses and carers.
• Honour the second childhood when it comes to cuddly toys and other comforts.
• Get an old-fashioned phone.
Something like this. If elderly parents are confusing the cordless with the TV remote, running down the battery in their mobile and even dementia-friendly models with big buttons and speed-dials are no longer cutting it, the deeply held, long-term muscle memory of using an old-fashioned, Bakelite-style model might be the solution. Better still, choose a colour close to the one your parents had in your childhood home (the kind your dad would temperature-check the receiver of when you insisted you hadn’t been chatting to your best friend for hours. Just me?).
• Take the biscuit (better still, take several).
If you need to encourage a loved one to eat a little more (or at all), try taking a favourite biccie, breaking it up and putting it on their lap, maybe, directly in reach. You might be amazed how, absentmindedly, they’ll take it to their mouth and have a nibble.
• Kindness trumps everything.
It sounds too obvious. But, in our experience, it’s so easy to get caught up with surface stuff when you’re looking at residential care or nursing homes at the expense of what matters most.
Pay attention to atmosphere - it speaks volumes. How happy do other residents seem? How warmly are you greeted both by the front of house team, and those working “on the ground” in the home?
• Be their storyteller.
As memories of the distant past can seem more present than what’s happening now, give those caring for your loved one - either live-in, at home, or in residential care - pointers to refer to and spark discussion.
• Photos can be portals to the past.
Just their presence in a new, unfamiliar setting can bring comfort and continuity, suddenly making it feel a little more like home. Even — surprise! — for you.
Old family albums, too, can be a good conversation point. Pack photos along with that first suitcase or travel bag. They are SO much more than decoration.
• A breath of fresh air.
Community and activities which involve “green space” are vital for mental health. If your loved one is going into residential care, are there opportunities for them to get out into the fresh air? What kind of activities are arranged?
• Go with your gut.
Trust that, if you feel something isn’t right, for whatever reason and in any situation, act on it. And pray. I didn’t put that part in my original list on this point, but I have never been more sure that we haven’t been able to navigate this in our own strength.
• Ask questions.
I re-covered this, up top, but it bears repeating: never worry about looking stupid, or something being “too much trouble” when talking to anyone caring for someone you love.
• Also, don’t ask questions.
Asking lots of questions of someone with memory loss of any kind can cause more frustration and, in turn, distress. It’s so easily done, though. This is something I’m still working on, more than a year since a dear friend gave me this advice. Gah.
• Maintain close communication with the medical team (doctors, specialists and consultants), both in the community and in a residential setting.
Follow up on test results, appointments, blood pressure checks, prescription tweaks, weigh-ins and more. If hospital appointments have been arranged, you might want to ask (if it’s possible and/or feasible for you), if you may accompany your loved one, to reassure them. Especially as they may be confused by new surroundings and wonder what’s happening.
• A dedicated notebook or page in your planner is your best friend (especially for easy access to hospital numbers, weight records and so on).
I wish I was better about this, although I do keep hospital numbers in one place and it’s a huge help.
• Take deep breaths, too. Lots of them.
Try doing Pilates, or any stretches to help with shoulders hunched through anxiety and shallow breathing. Open things up a little.
• Time of day is key.
Keep this in mind when planning visits. At the end of the day, energy levels might be flagging and confusion or agitation may be increased.
• Speaking of time, Google or Amazon-search “dementia clocks”.
They’re pricey, but absolutely worth it.
• Whiteboards and A4-sized, day-to-page desk diaries, too.
Grab a big one, and have it somewhere in plain sight for important phone numbers and other updates and info. Going through notebooks, let alone diaries or calendars, can prove too much.
• Short, frequent visits, if at all possible, might work better than longer, less regular ones.
• Call often.
One thing I’ve learned is that just a day or two without contact can feel like a week to someone with any kind of memory loss. Whilst they might not be able to articulate or even know how long it’s been, they feel it. They really do.
I know it’s hard, especially when life is busy and you’re plate spinning across the generations. I so, so understand. Which brings me to …
• … where we began, with kindness. Be extra kind to yourself, too.
Remember, you’re doing the best you can and hindsight is, as they say, a wonderful thing. Stay attentive, do the best you can, when you can, and be relentlessly kind to yourself along the way.
Thanks for listening to Life Stories. Subscribe for FREE to support my work, and never miss an essay or episode.
Where to find those mentioned in this episode on Substack:
Ruth Gaskovski writes School of the Unconformed.
Kelly Pittman writes Becoming with Kelly B. Pittman.
Fiona Woodifield writes Mum in the Middle.
Christine Langford writes and podcasts at Traveling with the Father.
Keep all your comments and tips coming!
And please do share this with anyone for whom you think it might be helpful.
With so much love,
Jen XO
This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit jennibadenhoward.substack.com
