Some years back, we lost our Mother to Alzheimer’s.
She was a gregarious and loveable person, and we kept her at home for as long as we could, until her confusion and behaviours made it simply impossible.
In the end, in distraction, we found her a good old folk’s home, and with great difficulty, too, as the aged care sector in Australia is a nightmare to navigate successfully. And there she duly whiled away her final months – in safety, but often in tears.
The tears weren’t just “Sundowners” – a well-known mood-shift that occurs in Alzheimer’s patients, especially around late afternoon. Fading light seems to be the trigger. The symptoms can get worse as the night goes on and usually get better by morning.
It was distressing for her, for the care-worn staff, and for us, so we often used to try and time our visits for this time of day to give her a lift.
Like a recent report in Australia revealed, she was one of 40% of old age home residents suffering habitually from depression.
The depression was caused by psychological dislocation – a loss of friends and family, a loss of whatever she could recall as “normal”, a loss of privacy, an inability to relate to the new world around her, or to make friends.
To get away from the psychobabble for a moment, in simple terms her biggest problem was that she was lonely. And in simple terms, there was very little anyone around her could do about it.
In the UK and now in Australia, TV series have revealed how teachers visiting elderly patients with a bunch of four year old pre-schoolers in tow is good for both groups. The elderly people experience physical and cognitive improvement, and improved mood, too. The kids just seem to love it. Care workers have known this for years – taking children, especially young children, into care environments is invigorating for the residents. Ditto animals, especially if they had companion pets before. They are both a dash of welcome reality, for people for whom reality has too often become dark and bleak.
As we move into a period where our aged care services worldwide are going to come under increasing pressure as the Baby Boomers start to age and die off, we wonder if we cannot find a better model for looking after our frail friends, family members and neighbours.
In less urbanised (and often poorer) environments, the aged stay in the community much longer – perhaps throughout their final days – cared for on an ad hoc basis by those in the village around them. They can wander safely, and access their neighbours, children, and animals.
They often still engage in food preparation, or piecemeal work.
For thousands of years, such elderly people have been loved and nourished in the environment they have lived in all their lives.
As a by-product of that situation, their lives are not endlessly prolonged by medical intervention which is freely available in care environments, but not necessarily to the long-term benefit of the patient. In a village in Africa, the Steppes, or Asia, an elderly person struck with an infection, or complications from a fall, may just fade away.
But in a Western care environment they are resuscitated, whisked off to hospital and then back to their care home, and regularly pumped full of prophylactic drugs.
So the question we need to face is: just because we CAN save an elderly patient, does that mean we should, if the point of saving them is simply to return them to a place that through no-one’s fault, they are uncomfortable and unhappy in?
There is another assumption that needs to be challenged, too, which is someone with a diagnosis of Alzheimers is someone who is gaga. This is simply not true. Increasingly, people live with Alzheimer’s for a very long time, buoyed up by better medication, exercise, deliberate mental engagement, engagement with other people and more. We are going to need to educate the public about the positive possibilities for people with dementia, and organise society so they are better integrated with the world around them. It is vital to their progress. And happiness. One thing that seems sure to us is that plonking them in “traditional” aged care will do little to prolong their useful life – and this is not to criticise the dedicated and skilful people that work in the sector. They do their best.
Ultimately, we need to ask “What is the most important thing for an elderly person with Alzheimer’s?” In our view, it is surely that they live out their final days with dignity and as much contentment as possible. Our current systems may provide the former – although they often do not – but very few people would argue that they do the latter.
A little contentment in our declining years shouldn’t be too hard to devise, but in our view we need to start rethinking aged care fundamentally, and now. Because right now, we are failing our older brothers and sisters, and it’s only going to get worse.
We need to think harder, and do better.
Keep the conversation going. Tell others! Feel free to print the article, too.
My beloved mother, (seen here just after I was born, with my brother and father), who had been an independent, forceful and capable personality all her life, from early childhood to her late 80s, finally developed Alzheimers, and once it set in it progressed rapidly.
Although we were unsure of the extent of the “loss” or “deficit” in her mental capacity, we knew something was seriously wrong with Mum in her last holiday with us, not least when she flew home to the UK and pestered the cabin staff to arrange a cab at the airport for her. Needless to say, a cab had already been organised, and, yes, she had a big note telling her the same. But she didn’t find the note, and couldn’t remember the arrangement. Still, kudos to the old girl. Getting the pilot of a 747 to radio ahead and ensure her private lift home was waiting was no mean achievement at 88. Mind you, if you knew her when she had her dander up, you wouldn’t have argued either.
Amusing though it might have been, this was the beginning of our realisation that she could no longer cope alone, a view that was reinforced over the next few weeks, until we went and got her and brought her to live with us in Australia to await the inevitable. We cared for Mum at home for a good long while, and there were some good times, to be sure, until we finally had to confront the fact that she was getting beyond our ability to look after, and arranged (with some difficulty) permanent in-patient care for her, where she lingered for some time before quietly passing away.
It is an experience that many, many people in middle age now face with their elderly parents, and unless we find a cure for Alzheimer’s – and rather horrifyingly – it is an experience many of us will face in due course, as our physical health outstrips our mental infirmity.
I know for one I shall be leaving very clear instructions for my daughter ensuring she does not feel guilty when it comes time for her to find me some residential care. Except in the case of mild Alzheimer’s, which is moving slowly, the burden on a family is simply too great to be borne for very long. Dementia patients need skilled care. I may even find my own accommodation and eventual nursing facility well ahead of time, while I can still think straight. But that isn’t the core of today’s musings.
I love this photo of Mum and Caitlin, taken in her garden when Mum was 80: to me it captures the joy of the span of a family
The thing which I found most difficult about Mum’s condition, and which I residually still feel guilt over, that can keep me awake at night years later, was not knowing the best way to “handle” her.
Simply not knowing how to talk to her, or how to try and gain her understanding and agreement. I had yet to come to terms with the fact that the latter might be impossible.
Her memory loss, conjoined to an innate deeply stubborn personality, not to mention uncharacteristic outbursts of anger and frustration, led to tension within the household.
There were occasions – too many, and I regret it bitterly – when I lost my cool, out of sadness and fear and confusion more than any real anger.
At one point, for example, after an awful fall that left her with a very nasty bump on the head and copious amounts of blood everywhere, we tried to use an old kiddie-gate at the top of the stairs to restrict her to the upper storey of our home on the very rare occasions that no one could be at home to care for her. (Usually a maximum of half an hour, and as infrequently as practical.)
Needless to say, during these periods, she was supplied with an easy to use “thermos” of tea, a pile of her favourite biscuits, (she could have happily lived on tea and biscuits), pre-tuned radio, TV, comfy chair etc. etc. Yes, she knew where the loo was. Yes, she knew someone would be back in a few minutes. Yes, she was quite happy, thank you.
All the preparation in the world made no difference. As if possessed of a vital and urgent purpose, as we left the house she would go to the staircase and fiddle with the kiddie-gate until she worked it out (no mean achievement in itself, I could never get it open other than by wrenching it physically off the wall) and we would come home to find her pottering in the kitchen, making tea and looking for biscuits.
“Hello, dears!” she cheerfully smiled, and became utterly confused when we duly grumbled (in our anxiety) that she wasn’t even supposed to be downstairs let alone using the kettle. Needless to say, she didn’t remember fernagling her way through the gate, let alone having previously swallow-dived head first from the top of the staircase to the slate floor below.
When we showed her the gate, and asked her why she had opened it, she first of all didn’t remember opening it, and then not unreasonably asked why a grown adult would have to be kept upstairs, no matter for how short a period of time. At that moment, she felt in control and no different from the way she’d felt for decades.
Lacking any guidance, we wailed: “Mum, you’re 90, with Alzheimer’s, you’ve already fallen and nearly killed yourself once, we’ve been over this.” Seemingly incapable of sharing our concern, Mum simply ignored our protestations and look at us with a twinkle in her eye. “90, am I? Gee, I did well, didn’t I?”
We were also completely uncertain as to how to deal with her inevitable depression and sadness as the loss of her faculties became clear to her.
A little hug goes a long way
I well remember one day coming into her room to say cheerio before I headed off to work, to find her staring miserably at her breakfast tray, which the living saint otherwise known as Mrs Wellthisiswhatithink had put together for her, with her favourite toast and orange marmalade (an addiction she has passed to me), a cup of tea going cold, and her tablets.
A little note was on the tray, as it was every day. “Good morning Mum! You are living in Australia with Jenie and Stephen and Caitlin – everything is OK! Here’s your breakfast, enjoy it, and don’t forget to take your pills! I am just downstairs. Love, your friend, Jenie.”
She stared with rheumy blue eyes at the note, then at the tray, and then back at the note, then at me, then back at the note. She pushed things around on the tray, uncertainly. I sat on the bed next to her, uncertain whether I should jolly her along, or just be quietly “there”. She was obviously experiencing real difficulty understanding where she was, and what she was meant to do next.
After a few more moments, she turned to me, and suddenly she had a flash of absolute clarity – a flash of accurate perception – that side of her personality which had stoically survived the Depression, a World War, the premature loss of a husband and two much loved sons – and much more – had kicked in.
She looked me in the eyes, and quietly murmured, “This is a rum do, isn’t it, Son?”
People with dementia lose many things: but they never lose the need for simple affection
Her use of the ridiculously antiquated English phrase simply served to emphasise the heart-breaking emotion of the moment.
I really had no idea what to say.
Here was the person I had looked up to all my life, confronting the obvious fact that her mind, for so long a steel trap, was deserting her, and she was turning to me, affectionately, suddenly vulnerable, and asking for me to explain. But no words to explain her situation to her came to me naturally, and anyway, she and I, although very close in many ways, had always communicated with little half-suggestions, little implications of topics, little hints. She was from an era long before the whole world wore its heart on its sleeve, with us all busily expressing ourselves for all we are worth. We were simply not the type of Mother and Son that would converse deeply on this and that, although we could, in extremis, if we had to. Dwelling on problems was simply not her way.
I just put my arm round her, and hugged her close, and said “Well, yes it is a bit, Mum, really, but Jenie and I and Caitlin will look after you, so try not to worry too much. All you’ve got to do right now is enjoy your breakfast. Here, let me help you with your pills.”
She looked at me for a few more seconds. Then she suddenly smiled.
“Jenie”, she said, “she’s my friend.” She said it proudly, as if having a friend was a fine achievement. “Yes, Mum”, I replied, “she surely is.”
“She’s my friend,” she repeated to herself. And then she said it for a third time. The thought seemed to comfort her, and she compliantly swallowed her pills with her glass of juice, and started on her cup of tea. “Oooh. Lovely cup of tea,” she murmured appreciatively, which I had heard her say every time she had started on a cup of tea for fifty years, no matter whether it was as strong as Thames mud or as weak as dishwater, scaldingly hot or tepid. “Lovely cup of tea.”
She smiled at me encouragingly, as if noticing me for the first time. “You look nice, dear. Off to work?”
I left the room choked with emotion, and was unsure then, as now, whether I had handled the moment as well as I might. And there were hundreds of such moments, if not thousands, as Mum’s mind simply flew away, bit by bit, and left her as essentially helpless as a newborn child.
Which is why I am here reproducing two articles. The first is from Kay Bransford, a follower of this blog, who writes about Alzheimers movingly and practically at her blog MemoryBanc, at dealingwithdementia.wordpress.com, and her advice is heart-warming and commonsensical. The second, to save people clicking her link, is the article to which she refers, “10 Top Tips for visiting a friend with Alzheimers.”
This is my point: when our family was coping with this problem, no one told us this stuff. But you have to – HAVE TO – know it, if you are facing this situation. And you also have to know you are not alone – to be encouraged to reach out for help, and keeping shouting and asking for help until you get it. Demand the help you need.
Meanwhile, let’s all send another ten bucks to the Alzheimer’s research charity near us, and hope like hell they crack dementia before it’s our turn.
Incidentally, if you have a minute and a half instead of ten minutes to keep reading, this little video on Kay’s site is also simple and instructive.
Dementia changes people in different ways, but there are a few things I found that will make a visit with an old friend easier to manage. My Dad was quieter, but my Mom is feistier.
Research has confirmed that dementia doesn’t magnify traits, but in general can create wholesale personality changes. Don’t be surprised to find the person you are visiting is different than you remember. I hope you will continue to visit, dementia is isolating to those suffering from this disease.
DOs
Begin with introductions. With a warm smile and relaxed posture, share a personal connection you share. Some suggestions that are helpful: “Hi FRIEND, It’s good to see you. You were one of the first people to welcome me into this community and it’s been a while since I’ve seen you” or “Hi FRIEND. It’s a pleasure to see you today. I was thinking about all the fun we had when we lived in Germany together — that was over 40 years ago! Our children played together so well.”
Bring pictures. It will help your friend understand your connection better if you can share pictures of you together.
Speak slowly, simply and pause to allow them to talk. Some individuals will feed off of your energy so focus on being relaxed and calm. Eye contact and direct interest is important.
DON’Ts
Ask what they are up to or any short-term memory questions. Short-term memory is the first to go and can set off emotions from frustration to anger and sadness if they are unable to answer the question.
Expect them to “remember”. Be prepared to carry on a one-sided conversation.
Correct jumbled memories. Allow your friend to share. Feel free to share how you remembered something, but don’t try to correct or debate facts.
Show up with an agenda of what you are going to accomplish. Most people are lonely and want to enjoy the company and some conversation. Trying to get agreement or push on a topic can often lead to stress in the person with dementia.
The last don’t has been a new item for me. With my father gone, the normal routine we had has also left and now my Mom prefers to spend our time together reviewing her calendar or burial plans. We will discuss the day of the week over and over for a half hour, move onto the burial date and then go right back into the day of the week. I arrive knowing there is no agenda, and can easily sit with her with a smile on my face and calmly answer the same questions over and over until she feels more comfortable. This too will pass. Relaxed.
Here is a post that made me consider this topic. I’m frustrated that more people don’t use the umbrella term of “dementia” but it includes some good information in a longer format that you may find useful.
TOP TEN TIPS, from Huffpost
Tom and his wife, Nancy, were going to visit George, one of Tom’s previous colleagues at the University of Cincinnati. This was their first visit to George at his long-term care facility and they were quite nervous.
They didn’t know precisely what condition George was in, and they had no idea how to interact with him. What they knew for sure, however, was that they couldn’t visit the way they always had when the three got together.
Family members or other very close loved ones who are accustomed to visiting may have a set routine and may have learned some or all of the tips below. But if you’re a friend visiting for the first time, or if you don’t visit the person very often, you may feel awkward and not know what to do.
An entire book could be written about this topic. I’m going to list some of the most important things to do (and not to do) when you visit a friend with dementia either in their home or in a facility of some sort.
I have compiled these tips based on four sources: an article of mine published here on the Huffington Post, an article published by Carole Larkin on the Alzheimer’s Reading Room, and personal communications from Teepa Snow (05.30.13) and Tom and Karen Brenner(10.03.13)
When I reviewed the sources I discovered that several tips were found in two or more of them. I discovered that the total of 25 items could be distilled down into 10:
1. Start off by looking friendly, making eye contact, offering a handshake and introducing yourself. (Snow, Larkin)
2. Be at their level physically — bend down if necessary — for example, if they are in a wheelchair. (Larkin)
3. Talk about the old times more than recent information. (Snow)
4. Don’t ask if they remember something. (Marley; Larkin)
5. Speak calmly, slowly and in short sentences. (Larkin, Snow)
6. Ask only one question at the time and pause between thoughts or ideas to give them a chance to answer. (Larkin, Snow)
7. Don’t correct them or argue with them. (Marley, Larkin, Snow)
8. Keep memories positive. Don’t bring up topics that could upset them. Turn negatives into positives. (Marley, Snow, Larkin)
9. Do something with the person rather than just talking to them. Bring pictures, CDs of music the person used to enjoy, or other “props” (such as items related to one of the person’s special interests), to bring up old memories. (Snow, Brenners)
10. Tell them what you are going to do before you do it – especially if you are going to touch them. (Larkin)
Following these tips should make you feel more at ease and make your visit more enjoyable.
Does anyone have any additional tips for visiting a friend with Alzheimer’s?
You may also care to read my other musings on dementia:
It's the thin line between reality and fantasy. It's the thin line between sanity and madness. It's the crazy things that make us think, laugh and scream in the dark.
Some years back, we lost our Mother to Alzheimer’s.
In less urbanised (and often poorer) environments, the aged stay in the community much longer – perhaps throughout their final days – cared for on an ad hoc basis by those in the village around them. They can wander safely, and access their neighbours, children, and animals.
Well, This Is What I Think 