On memory, loss and love

What I'm learning, how it's helping and some advice I hope might help others.

My mama in Canada, where she lived for a while in her teens and early twenties.

I’ve been moved and humbled by the kindest comments, DMs and messages in response to a post I wrote last week on Instagram about my mother.

It was only afterwards that I realised it was Dementia Awareness Week, so I wanted to follow up with more thoughts—and things others have shared—in the newsletter.

As I know not everyone’s on Insta, here’s what I wrote:

Shout out to M&S, with a ridiculous selfie taken in a car park after a dash-and-grab wardrobe refresh for my beloved mama in her new, dementia specialist care home.

Running late as usual, I was helped by the warmest and kindest assistants who were genuinely THRILLED to help me pick out practical but pretty pieces (all the pinks, peaches and elasticated waists for ease).

As I took a pleated ombré skirt from the rail, thinking how much she’d love the peachy-pinks, I flashed back to our childhood mother and daughter trips to M&S at Marble Arch, with lunch stop at Selfridges, to choose summer dresses. I remembered picking out a totally 70s, pink pleated cheesecloth dress which was just like my impossibly cool Swedish friend, Ulrika’s …

… most of all, I’m grateful. For the kindness shown, connections made and the privilege of, tonight, getting to shop for a swirly skirt I hope my mother will love to twirl around her bedroom in, just as much as I did mine.

Last week, my friend Sue Fulmore wrote movingly about her father struggling to recall his favourite cut of steak on a supermarket trip, yet didn’t hesitate in picking out tulips for her mother, in her favourite colours.

What gets remembered and what doesn’t is an ongoing source of fascination to me as we walk this road. Breaking into song for my dad’s birthday the other day, my mother, without skipping a beat, joined in.

Likewise, the Lord’s Prayer, when we recited it together.

Both online and off, I’ve found myself swapping stories and comparing care notes, of sorts, with others in a similar place. One comment on the ‘carpark post’ particularly resonated. Someone who was going through much the same with her mother said that it feels like it’s happening so quickly, and yet also in slow motion.

I’ve found that to be true, and another way in which so much of this time has reminded me of the early parenting years. That whole, “the days are long, but the years are short” thing.

And, as with motherhood, it’s hard to know when one stage slips into another. There are silent milestones we don’t realised we’ve passed until later.

I couldn’t tell you the last time I instinctively called my mother for advice in a fix, confident she’d understand what I was talking about, in the same way that I can’t recall the last time I virtually slept-walked into our son’s bedroom to nurse him at 3am.

Perhaps it’s sometimes kinder that way, on both counts.

A couple of years back, Will and I came across our 90s Camcorder and (gasp!) video cassettes.

Posting about it on Instagram, I wrote:

We time travelled back to nineties London, a year as newlyweds in Oxford and on, to the coast and another point on the path to mum’s memory loss ... ah, there she was!

Watching with us, one of our children said out loud what we were all thinking: “I don’t remember Grandma ever being like that”.

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.

But I still do, and I know that she still knows.

I can see it in here eyes. The same, beautiful deep brown eyes that caught my dad’s sometime in the 1950s.

They might be mistier now, but the sparkle still gets gets through when she looks at me, and for me, at the same time.

All she needs to know is that I love her, she is always and forever my mother, and I am here.

---

A few some of the things I’ve learned so far on our journey.

• 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—en suite bathrooms, size of rooms, modernity of building—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. My mother lived in Canada for several years in her late teens/early twenties. Ask her about Canada today and her eyes light up (just as they always did).

  Tell those caring for them, day to day, about those past connections. They can be like keys, and, sometimes, bring comfort.

• 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. I can’t tell you how reassuring I found it to walk into my mother’s room and see a giant canvas of a family picture on the wall. I hung it so that it would be the first thing my mother saw when she woke up, and the last thing she gazed at, at night.

  Pack photos along with that first suitcase or travel bag. They are SO much more than decoration. The morning my mother first moved into a residential home, I did a 60 second, last minute ‘sweep’ of the home of precious photos and frames, tossing them into a reusable supermarket Bag For Life. Sitting with her in the ambulance-style bus, clutching the reinforced plastic handles as it bumped along the road, it struck me: it definitely was a “bag for life”. One full of precious memories of a life: hers.

• A breath of fresh air.

  Community and activities which involve “green space” are vital for mental health, as we’ve learned in recent years. If your loved one is going into residential care, are there opportunities for them to get out into the fresh air? How often are activities arranged?

• Go with your gut.

  Trust that, if you feel something isn’t right, for whatever reason and in any situation, act on it.

• Ask questions.

  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 dementia can cause more frustration and, in turn, distress. It’s so easily done, though. Especially in the earliest days. This is something I’m still working on, more than a year since a dear friend gave me this advice. Gah.

• Maintain 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.

• A dedicated notebook or page in your planner is your best friend (especially for easy access to hospital numbers, weight records and so on).

• Take favourite treats on visits (sweets/candy, cookies and so on).

  And try not to comfort-eat them yourself when you get there.

• Take deep breaths, too. Lots of them.

• 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 it’s one of the best investments we’ve made for my parents. Truly.

• Whiteboards, 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 might work better than longer, less regular ones.

• Call. Keep in touch. Even if you called yesterday, call today, too (if you can).

  One thing I’ve learned is that just a day or two without contact can feel like a week to someone with 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 kind to yourself, too.

  You’re learning, doing the best you can and hindsight is, as they say, a wonderful thing. Stay attentive and just do the best you can, when you can, and be relentlessly kind to yourself along the way.

I came across this beautiful song from Narrow Skies, inspired by the experiences of the singer, Anita Tatlow, with her dear grandmother.

We walked that season of gold
I'd walk it again with you
Clouded moments, hazy pictures in my mind
I've seen this moment before
Can I go there again with you?
Reminisce, of where time stands still

—Seasons Of Gold, Narrow Skies