Changes

Something’s afoot. There’s definitely something different going down. It started three or four weeks back. At the rest home Christmas party.

I arrive to hear Mum’s been out of sorts. All day. No enthusiasm for a trip with one of her favourite carers. 

Not keen on getting dressed up for the party. Lethargic and withdrawn.

“I feel very strange,” says Mum when I arrive in my most obvious Christmas outfit - lots of red with loud festive earrings. Mum looks not just fantastic but stylish as well - a beautifully coiffed vision in lilac and silver. But she’s not herself.

“Strange?” I ask. “Tell me more.” And despite my probing, Mum is completely unable to explain what she means, either physically or mentally. Most odd for my ever-articulate mother.

Staff, in their Christmas best, are handing round nibbles. “What’s happening to me? Mum asks, over and over. I find myself falling back on woolly euphemisms and old-fashioned phrases.
“You’ve had a bit of a turn,” I tell her. “Nothing major, just a blip.” I sound cheerier than I feel.

Mum comes right temporarily then tunes out again. Pretty soon she’s back to being fearful and preoccupied. Suddenly, without warning, Mum flees to her room. We coax her out a couple of times but nothing works. For Mum, the party’s over.

We take Christmas Day very slowly. The low stimulus approach - fewer people, lots of one-to-one time and more rests. At the end of the day, Mum’s happily exhausted.

But by Boxing Day, the strangeness is back. Despite my best efforts to pace things, Mum’s seriously losing it after less than two hours. The worst part is, she knows. 

“What’s happening to me? What’s gone wrong?” Nothing seems to reassure her.
“How about a rest?” I say, “Give your brain a chance to reboot.” Mum refuses and soldiers on.
She’s exhausted and confused.
Once again I suggest a sleep. “Just a quick one, you'll wake up a new woman. I promise.” Mum reluctantly complies and I tuck her into bed.

It doesn’t work. Mum wakes half an hour later. Not just confused but angry too. With a challenging stare that’s hard to avoid.
It’s the ‘damned if you do, damned if you don't’ situation. Meet her gaze and you're clearly up for a fight. Avoid it - you're cynical and uncaring.
“You haven’t sold my house? Have you?’ says Mum. More an accusation than a question. I struggle to explain.
“Don’t look at me like that!” says Mum. There’s no way to arrange my expression that doesn’t cause suspicion or fury.

Several more rounds of that and it’s almost five pm. Time to drive back to the rest home for dinner.
Mum flatly refuses. This has never happened before. Not once in the six years she’s been living there.
Mum has no idea where she’s supposed to be going. She just knows she doesn’t want whatever I’m suggesting.
The only thing to do is back right off. Change the subject and hope something will shift.

After a few minutes my mother struggles to her feet and announces that she’s walking home. To the rest home I presume. I daren’t ask.
I take her arm. “You're not coming with me!” says Mum.
“No,” I say, “You're right, I'm not. Just walking to the gate.” By the time we get there her rheumatic knee pain has kicked in. Her resolve has faded. She makes for the car and I help her in.

Suddenly Mum’s back. “I think I might have behaved badly. I’m sorry.” She rubs my arm and looks at me kindly, maternally. She’s fluent again, articulate.
“I think I need psychiatric help. If this goes on, you'll have to put me in a home.”
She looks at me. I have ‘You’re already in a home’ written all over my face.

Mum sighs heavily and gets into the car.

Jokes

There’s a warning sign at our local airport. I suspect it was inspired by a conversation a staff member had with my mother. 

Some years back - post 9/11 - I was queueing with Mum at the airline ticketing counter. 

As I lifted her luggage onto the scales the friendly staffer asked whether Mum had packed her own bags. By that stage my mother had been experiencing memory problems for several years.

“What sort of question is that?” she enquired.
“Just a security question, Ma'am.”
“Security?” said Mum. “For heaven's sake!”

My mother can be quite witty - biting even. But in this situation, where she was completely oblivious to the context, it wasn't the least bit funny. Things got worse when I tried to explain about the terror attacks.

“Of course I’m a terrorist - my bag's absolutely full of bombs!”

We were immediately marched off to the emergency counter for more detailed questioning. Once there I whispered something about Mum having Alzheimer's. All was forgiven.

But next time I visited the airport there was a sign. 'We take all jokes about security seriously. Police/authorities will be informed and criminal charges may apply. Your safety and security is our priority.'

Memory problems can get you into some sticky situations. As a carer, it’s hard to know what to tell people. Failing to forewarn can be distressing and confusing for all concerned. But other times I feel resentful. Surely I shouldn't have to tell people. Things should just unfold naturally.

But these days I’m going with the ‘forewarned is best’ policy, more often than not. For my own sake and Mum’s.

If people know she has memory problems they figure out how to have a mutually enjoyable conversation a lot more quickly. Without those awkward moments where you can see them thinking - 'I thought I just answered that.'

Of course you can't prepare everyone. Neither should you.

But for those tricky occasions when you're dealing with a shop assistant or a ticketing officer, it's great to have something up your sleeve. I now have a small business-sized card courtesy of Alzheimers Wellington. When things are going pear-shaped I slip it out of my wallet and discreetly slide it across the counter.

“My companion has an illness which causes memory loss and confusion. Please excuse any unusual behaviour.”

The customer service is transformed and Mum doesn't notice a thing.

I wish I’d had it with me, that day at the airport.

Rest home sleepover

I’ve always wanted to spend the night at a rest home. A strange ambition but there you go. It’s not as though I haven't visited enough of them. Over the past ten years I’ve spent time in at least a dozen aged care facilities with one or other of my parents. Rest homes, secure dementia units, psychogeriatric wards and hospital level facilities. I’ve visited them all. But I’ve always wondered what it would be like to be in one.

Last week, through a happy series of events, I was offered the chance to stay over at a retirement village, half an hour from home. Me and nine other people, spending time together, observing and reflecting on the experience of being residents, at a rest home.

Inching down the motorway through Friday afternoon traffic, I arrive in a suburb I’ve rarely visited. I park outside a facility I know almost nothing about.

It’s past 5 o’clock and our little group are all late for dinner. We quickly introduce ourselves before heading off to the dining room. Most of the residents already have left. There’s a few stragglers dotted around - just sitting quietly or slowly making their way through the remains of their meal.
It’s old-style hospital food - canned chicken soup, curried eggs, white toast, margarine and apricot jam, with quartered oranges to follow. All served patiently and respectfully by the long-suffering kitchen staff who've stayed late to look after us.

Dinner’s over and we’re summonsed to the sun-bathed conservatory at the other side of the dining room. Three of the night staff have prepared a list of rules for their new, temporary residents.
“No resident is to leave the unit after 9pm or before 7am without signing out.” Health and Safety.
“No bed sharing.” We laugh nervously.
“Staff will check residents, in their rooms, hourly. With torches.”
“And for any misdemeanours…,” reads our care assistant, struggling to keep her face straight. She passes the list to her colleague. “All medication will be administered anally.” They dissolve into girlish giggles.

The staff here are welcoming, warm and hilarious. They are also calm, skilled and professional. For some, caregiving is a family tradition - across three generations.

At first, our fellow residents are deferential. They keep their eyes down or smile shyly, moving aside to let us pass. Close in, they’re chatty as anything. One smiley resident tells me she’s exhausted. “Yesterday,” she confides, “I was filmed for TV!” The frail elderly man who shares her table is pretty on to it. He’s convalescing after surgery, having broken his hip in a fall at home. I learn about the complexities of fractures involving ball joints.
Later, in the corridor, I bump into a fit-looking older man. We pass and repass each other several times. “Obviously we’re both looking for something,” he jokes. Turns out he’s lost his bath towel. I’ve lost track of the exit. We introduce ourselves. He tells me he doesn't understand why he’s there. “It’s not like I have dementia or something.”

The sleep-over group exchange the heat of the rest home for the crisp air of early evening. We talk and walk around the beautiful gardens. Beside the roads that wind through the village it’s all tidy beds of flowering roses and rhododendrons. Further afield we pass allotments and free-standing cottages with bright gardens spilling out over steps and paths.

When we return to the rest home it’s supper time. Those not already in bed are slowly making their way to their rooms. It’s 7.30 and the sky’s still light. Our little group mostly decline offers of Milo and muffins. Chatting in a windowed nook just beyond the bedroom area we close the firedoor so as not to disturb the other residents. Only to find we’ve locked ourselves out. Good-humoured staff come to our rescue.

It's time for bed. Only 10 o'clock but it feels incredibly late. We make our way down the long corridor to our rooms, each one carefully labelled with our name. The toilet is opposite mine. Cautiously, I open the door marked Ladies. The large white space is spotless. No pictures or mirrors - just a handbasin, paper towel dispenser and a call button on a long cord, draped within easy reach of the toilet.

I cross back to my room. It’s like a nun’s cell. Monastic and bare. There’s a narrow single bed, a wall-mounted shelf alongside, a handbasin and a built-in wardrobe/chest of drawers. A fashionably retro flower painting prettifies the long wall. There’s nothing else but a small desk without a chair.
My room is warm and bath-like, too hot for bedclothes. I open the window as wide as it goes and get ready for bed. I rummage for my phone. It’s almost overwhelming, this sudden urge to connect with the outside world. Do the permanent residents feel this too? Do they even have phones or computers?

I hop into bed and gaze round the room, mentally furnishing it and wondering what I’d bring to this tiny space. What I’d leave behind. I wonder who’s slept here before me. Who’s still living and who’s died.
Here I am, in close proximity to more than a dozen people. Some are awake, keeping watch over the corridors and listening for sounds. Others are murmuring, coughing and gently snoring in their rooms nearby. I’m probably as safe as I’ll ever be.
I feel strangely vulnerable. It’s like sleeping by an unlocked door, in a hotel full of strangers. And I can’t shake off a vague feeling of sadness and loss.

Eventually I sleep, waking only once to pull on my dressing gown, crossing the muted light of the corridor to the toilet on the other side. A quiet-footed caregiver greets me as I pass, dimly lit like an usher at the movies.

I’ve forgotten to set my alarm. Morning light seeps through the curtains. I hop up and draw them back. Staff are pulling up to the hospital carpark ready for the handover of the night shift. The sun’s just reaching the roses. They’re blooming like crazy.

Perfect day

Every once in a while someone tells me it’s not really worth spending time with a person who has dementia. Because chances are, they won’t remember. Yesterday gives the lie to that.

The night before last, Mum phoned from her rest home, just after six. She often calls then. Dinner’s over and another featureless evening stretches ahead. This time she was particularly low. I managed to cheer her up - momentarily. By reminding her that the next day was Saturday. That we’d be Doing Things Together. It didn't help for long.

“Tell me, honestly - what do I have to look forward to?” she asked.

How do you answer that?

So yesterday morning, when everyone in my house had gone out for the day, I whizzed round and scooped her up. Mum was fully clothed but had retreated to her bed. When I asked her why, she said there didn't seem to be anything worth doing.

So we set off for the shops. Mum adores drives - it’s like being at the movies without the stress of following the plot. Recently I’ve noticed that she’s just as happy parked up somewhere that’s busy, watching people going about their lives. So I parked the car, wound down all the windows and left Mum in the sun, happily studying the passersby while I did my errands.

Next we had lunch. Mum seldom complains about rest home meals. I suspect they're not the greatest. I’ve noticed she loves anything they don't serve in institutions - soft boiled eggs, asparagus, fresh wholegrain bread, a slice of perfectly ripe pear……

After lunch I suggested we both have a nap. Mum was sceptical. I persuaded her to lie down for a minute. I’d hardly put the rug over her before she passed out.

She slept for almost two hours and awoke refreshed, ready to take on the garden.

So we weeded and potted and swept and soon it was time for afternoon tea. Outside. Then we sat and gazed at the splendid vista of the newly tidied courtyard.

Suddenly Mum had an idea.

“We should take photos! Do you have a camera? Some film?”

“Yes,” I lied and fetched a digital version. I lined up the shots and got Mum to press the button. Then we took turns taking pics of each other - posing beside the newly planted pots.

At five, I drove Mum home. She was really, really happy. We both were. Mum didn't remember exactly what we’d done, it's true. But she knew she was happy.

And that’s the bit that stuck in her memory.

Constructs

I’ve been thinking about constructs. And what are those, I hear you ask? They’re the way we make sense of our world. How we construct our reality.

For my mother, living with dementia requires her to work around her disability. Constantly. Mum’s memory of even the most recent events is fiendishly unreliable. Her ability to problem-solve severely compromised. And her grasp of her current situation - the rest home she’s lived in for the past five years and the staff and residents she’s come to know over that time - comes and goes, all the time.

It’s like acting in some strange play with half the cues missing. Particularly when she’s just woken up.

This morning Mum phoned around ten.

“There must be a somewhere better than this,” she said, her voice wobbling. It was hard to get a coherent story. Turns out Mum had just woken up, boiling hot. Her heater was going full bore and the sun was streaming into her room.

“The staff here - they just don't care,” said Mum. “Not one single person has looked in on me. It’s shameful - it’s neglect!”

My first reaction was doubt. From my experience, I was pretty sure that staff would have already checked Mum several times that morning, offering breakfast and help with getting up. And that Mum, who prefers to sleep in, would have declined all offers.

That might have been Mum’s experience but it certainly wasn't her memory.

In the absence of recent memories, Mum constructs her reality based largely upon what she is observing at that moment. So instead of denying her reality, I started right there.

First of all I listened. It wasn't hard to empathise with how Mum was feeling. Both parts:

• physically - having woken up, seriously overheated 
• emotionally - feeling completely ignored by her carers

So for a while, all I did was reflect on how horrible it must have been.

Then after a bit, when Mum was calmer - and cooler - I made some tentative suggestions.

Could it be that her room was hot because I had turned the heater up the previous day?
“Yes,” said Mum, “that could be true.”
“And maybe,” I ventured, “the sun was unseasonably hot because at last the weather is on the improve?”
“Quite possibly,” Mum replied.

I didn't go near the business of whether staff had looked in on Mum that morning. That’s something for me to follow up with them. And happily, Mum seemed to have forgotten all about it. Five minutes later, she was feeling much better.

“Thank you for listening, dear. It’s good to talk to someone sympathetic.”

Mum paused to greet a carer walking past. “Here comes Beatrice. I love Beatrice. She always gives me hugs. The staff here, they’re so lovely.”

How to be a carer (and blog about it)

Stolen and adapted from Austin Kleon

1. Caring is like collage

Once I’m in the zone - thinking about being a carer, what I do and how Mum responds - ideas pop up everywhere. I stick them together and make something that works. For Mum and me.

So….. spending a summer weekend at the beach + noticing a complete absence of elderly people + knowing Mum misses many of the physical sensations most of us take for granted = making a plan for us to immerse ourselves in the sensory delights of the seaside (Magic Beach)

2. Read, read, read

There are great books - some about living with dementia (Alzheimers From The Inside) and others about caring for people with dementia (Contented Dementia). Then there are books that never mention the D word, as Mum calls it. They talk about stuff that’s so interesting, useful and relevant you'd swear they were written with caring in mind.

3. Keep a swipe file

I constantly stumble upon things that spark ideas for me and Mum. Anything useful gets chucked in the folder. An ad for the local swimming pool led to a hydrotherapy session (Hydrotherapy). A discarded train timetable got me thinking about taking Mum on the train, retracing the trip she did to school from the age of four. Train trip coming up soon!

4. Carry a notebook and pen.

I’m a dedicated list maker so I’m always writing stuff down - when I’m with Mum and when I’m not. Quotes from Mum, things she suggests, reminders for myself…. the more I do that the more likely I am to come up with activities Mum likes.

5. Step away from the screen (and other distractions)

Caring for people is about engaging with them, giving your full attention. When my phone pings, it’s tempting to check it. But it’s easy to zone out and neglect the person you’re with. When Mum and I are together I try to focus on her. As much as I can.

Just as children notice when you're multitasking and not really listening, older people really feel it.

6. Don’t wait until you know what you think to get started.

When I started blogging I had no idea how it would go. It’s been so interesting - If I hadn’t been writing about stuff I doubt I’d have tried nearly as many things. It wasn't until I started writing that I began to really notice stuff and think intentionally about caring for a someone who’s living with dementia.

7. Keep a (daily/weekly/whatever) routine.

I’m a part-time carer so the routine with Mum and me is weekly - Saturdays with Mum. I write about it when I feel like it. Not every week, more like once every two or three weeks. But the fact that I’m writing about it regularly keeps my brain ticking over. What have Mum and I been up to? What worked, what didn’t ? What’s our next adventure?

8. Write something you would want to read

Part of the reason for starting the blog is I couldn’t find anything about anyone else in a similar situation. But I was pretty sure that every Saturday, or Sunday, or any other day of the week, there are people like me - daughters (or sons) who visit their mother (or father) in rest homes. I was right. It’s great hearing from you and sharing ideas.

9. Tell stories

Stories are what work best. The more real the better. Enough said.

10. Practice in public

Anonymous blogs are kind of public, but not too much. There’s pros and cons. Pros? I did it that way to preserve Mum’s privacy. It also helped me at the start when I was finding the whole blogging thing quite scary. And the cons? Anonymous blogs are harder to promote.

So ….if you like Saturdays with Mum, please share it with anyone you think might find it useful or interesting.

This month is Saturday with Mum’s first birthday.

Cheers!

Love from Sandwich Gen Jane

Hard stuff

Lighthouse - Em Wafer

www.facebook.com/emwaferart

OK - here’s the truth. Sometimes I don't feel like Saturdays with Mum. I need to revise that. Sometimes I don't feel like Saturdays with Mum with dementia.

I’d like to have the weekend off and not feel bad about it. Better still, I’d like to have the weekend with my mother as she used to be. I bet she would as well.

My friend Lorraine once described dementia as time travelling. Talking with Mum, things segue from one generation to the next. One minute we’re chatting about my father then Mum says something slightly odd and I realise it’s my grandfather we’re talking about - Mum’s father who was in born in Edinburgh, travelled to New Zealand as a young man and raised a family in Wellington. In that moment, Mum thinks he brought me up as well.

Next thing Mum’s reminiscing about my dad, who died three years ago - he was 93. “Do you remember your father?” Mum asks. A moment’s silence. It’s hard to know what to say.
The trouble is on the days I don't want to do it, I don't want to not do it either.
Why’s that?

It’s more than the avoidance of guilt. It’s that we both get something out of it, even when things don't go well. We talk and talk and talk. We listen to music, Mum quotes from obscure poems, I tell her random things. We go places and we do things. Sometimes it’s the same old tracks. Sometimes it’s completely new. For both of us.

“Don't get old,” says Mum. And I ask her about the alternative. Dying young?

Elderly mother and middle-aged daughter. I’m sure Mum thinks I’m still twenty-five.

For the last ten years we’ve been navigating a different relationship. One that’s based on mutual love and attachment but fewer and fewer shared memories. Me trying to stay upbeat and constructive while not denying how it is for her. Mum determined to get better and terrified of being a burden on me.

It’s a dance.
And sometimes it's hard.