Lessons in presence.
Notes on caring for parents and those we love with memory loss.
A friend is recovering from surgery this week, and asked me for some suggestions for podcasts to plug into whilst she rests up. I forwarded her a few, including a recent episode of Everything Happens, in which Kate Bowler talks to John Swinton, who spent 16 years working as a nurse in the field of mental health, learning disabilities and dementia. He then went on to become a theologian, ordained minister, and is now the founder of the Centre for Spirituality, Health and Disability.
Kate’s conversation with John makes equal parts easy and profound listening as they discuss “how do we create belonging when the people we love experience such uncertainty?”
John is the Chair in Divinity and Religious Studies at the University of Aberdeen, and also gave this talk at St Paul’s Cathedral on the subject of Who am I? Identity, Faith and Being Human which I highly recommend watching (it’s a YouTube link).
All of this took me back to the post I wrote last year about the sometimes super-hard, bewildering privilege of caring for elderly parents, and our own family’s journey with my mother’s memory loss.
Thinking about it, there was never a point along the way at which I remember losing the mother I knew.
The one I talked to, confided in, and called almost daily.
Who called me. (I STILL miss that).
I’ve asked myself, looking back, when did her grip first start to loosen? It hurts to think too much about how I’d love to go back there, to exactly that point on the road, just to tell her how much I love her, and that it’s all going to be OK.
A year on: what I’ve learned.
What follows below is an updated version of the pointers, of sorts, in my first post. And friends, if you have any tips to add, please feel free - and positively encouraged! - to pop them in the comments. And, whilst my dad might raise an eyebrow, I’m sharing pic of us on my wedding day, because his smile is just the same and I’m so lucky to have him.
To whomever it might help, with love
• 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.)
As
adds here, you can make a plain glass of water more enticing by serving it like a fun, cocktail-style glass with party umbrella (I love this idea!). Anything to make it more appealing.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.
Years ago I shared these words on Instagram that I came across by Nicholas Frankovich.
Beautiful, isn’t it?
• 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.
• 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.
— this tip from
.• 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.
• 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.
— this tip from
.• 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 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.• 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.
• 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.
— this tip from
.• 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.
Hopeful reads and listens.
One of my dear friends, writer Sue Fulmore, has written beautifully and reflectively on her own family’s experiences. A while back, she shared these beautiful words on Instagram:
When it gets to the point where you can no longer reach the one you love, fear not.
They are never beyond the reach of the One who made them.
Take heart my friends.
And, speaking of solidarity and hope, I caught this mini-episode of the Kelly Corrigan Wonders podcast yesterday, featuring an essay by Heather Hoskeer in tribute to her mother, who she lost to Alzheimer’s - a process she describes as a “loss in slow motion”. I deeply resonated with this, along with Heather’s words about loving the nurses and carers who loved her mother, even referring to them as brothers and sisters. I get this, too.
And finally, how beautiful is this setting of Emily Dickinson’s poem?
“Hope” is the thing with feathers,
That perches in the soul,
And sings the tune without the words,
And never stops - at all.
— Emily Dickinson
Ooh, a lot here that I can appreciate and I’m grateful for you sharing. My husband and I talked yesterday, when I posted my Becoming a masterpiece article, about the sharing of details about our daughter. It is a fine line. I often wonder about it, too. I began writing, after a very long nudging to do so, to heal and share the experiences and stories of what I’ve learned along the way of living in while trying to recover from trauma. And my trauma is mostly from experiences with our daughter. For now, I’ve come to the conclusion that I’m telling my side of the story and if and when she wants to write and tell hers, I’m sure we’ll (her family) be a large part of it. I can’t stop her nor would I want to, as it’s her lived experience. I feel I can’t write honestly and vulnerably about my experience without including some of those details about her. But the timing of your post and recent chats and my recent article will keep me thinking about it. I have asked her in the past what she thought about me sharing so much and she didn’t mind. But she is getting older now.
On another note, I love the pic of sweet young you, dressed up with your pin. Adorable.
And, I also love your idea of making your posts podcasts. As a matter of fact, I’m trying to remember to include an audio version of my posts because a dedicated reader of mine told me she has trouble seeing the screen to read my posts but she wants desperately to be able to read them all. So I told her I would put them to audio and she was tickled. She is a senior and when I read your post about tips and your podcast idea and thought of my reader I thought that might be a good tip to include - offer audio versions of books or podcasts for them to listen to. OK, one more thought...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. I have a photo of it somewhere in my phone. I teared up when it happened. Perhaps doing simple art activities is something else that could be added to your list? :)
This is a simply beautiful, powerful post Jen and I have read and reread several times, just to savour it. The moving words from your previous article on that last time there was that clarity to maybe tell your dear mum you love her. I'm in tears. So often these precious moments in time, slip through our fingers. But your mum will know your love for her, she will sense it, I adore Sue Fulmore's comforting words too.
Those photos - of you when you were little and your dear dad, smiling. You offer such strength and courage to others going through similar times with loved ones and your tips are brilliant! I so so relate with being an advocate, coordinating for doctors and yes - so true about knowing when something is wrong in your gut. I also relate to needing to eat something when with an older relative - I feel so bad as I haven't always been having a snack with Mum, as I'm gluten free, but she's always so disappointed if she can't offer me anything. Must make more effort with that. And also yes, so true, being kind to yourself in such a difficult situation is a mantra for us all! So beautiful, you really are a ray of sunshine xxxx