Regular readers may be surprised that I’m visiting the dementia diaries again. If you are a new reader who has found this blog by putting dementia into a search engine, hello. There is information here, accessed by clicking on dementia diaries in the bar to the right of your screen. The experience was gathered during five years of care for my demented mother, which I blogged. Every agonised step of the way is there, with nothing omitted. The funny things that happened, the frustration with various agencies, the reactions of the wider family, the neighbours who stopped speaking, are all documented as they happened to me and my mother. The diaries evoked a response from others in the same situation, world-wide. I wrote them because it helped me and helped others with the same difficulty. Despair is likely to strike in the middle of the night or at the end of a very long day, when the world is asleep and there is no help, at which time learning from a screen that someone else has been where you are and lived to tell the tale might be the only help you are going to get. If you are new to this and wish to email me about it just click on the link at the end of this bit of writing. Whatever awful thing has occurred or how inept your response to it, I promise will not shock or stun me, and I will never say ‘You did what? You idiot!’, because I am visiting this disease as an amateur assistant for the third time now.
The first time was just after I married, when my new mother-in-law was diagnosed with Alzheimer’s disease, back in the late 1970s. Nobody knew what it was, you had to explain that it was a pre-senile dementia. My poor mother-in-law, who I scarcely knew, was only in her fifties. My father-in-law, having two older sisters, had decided long ago that in times of trouble the women closest would help. So he drove himself and his wife from the North East to Scotland one weekend, where his sister-in-law lived in a big house with a guest bedroom; the following weekend he drove down to the Midlands where my husband and I were just settling into our new house, which had a spare bedroom. It was a four day long weekend. As I reached home from the school where I was a teacher, my in-laws would be sitting in their car on the drive. They would wait, on Monday, until I returned from school to leave, and in between I was nurse, cook and bottle washer while my father-in-law and husband sat in the pub. At the end of it all I was in debt to half the value of our house and had cancer for the first time.
The second time I became the carer on the death of my father. For a couple of years, when I visited, he had been standing behind my mother making whirly signs beside his head. On the advice of a couple of doctors I let sleeping dogs lie. Again the disease was of a five year duration from diagnosis, although the specific type of dementia was not able to be identified during my mother’s lifetime. At the end of it I would have been in debt to the tune of half a million pounds, but fortunately my parents lived in a town where the houses were as expensive as the private health care. One offset the other, so I didn’t have the debt, just the cancer. The surgery to save me was bungled so I am still suffering intestinal problems and a lot of pain three years later.
This time round it is my father-in-law’s second wife who has been diagnosed with Alzheimer’s disease. She is taking the medication which prevents further formation of the plaques in the brain, which characterise the disease and prevent the brain working properly. This is a new invention since my mother and mother-in-law were diagnosed. The situation has been complicated by the pandemic. During the lockdown my Step-Mother-In Law was being kept company and helped in isolation by her son who lived in the same town. He committed suicide in March, prior to her diagnosis, leaving his sister, who has already had breast cancer and lives at a distance, as sole carer. I have been talking to SMIL every day on the telephone from the beginning of the pandemic but am unlikely to visit so far away. My greatest use to her daughter is moral support and continued telephone contact every day with SMIL.
I am also in weekly telephone contact with a friend whose husband has the disease, who also cared for her difficult mother through it and ended up with cancer.
You can see why nothing you say about the disease will shock me. I have a wardrobe of tee-shirts on this problem. Accessing medical and daily assistance is as near as your search engine. It became evident, last time round, that provision of help is various round the world, but that there is some knowledge and experience wherever you are reading this. The problem of how to help demented people and their families and especially how to help family members who are direct carers and prevent them become ill themselves, seems to be evident in all developed societies.
In my dealings with this disease I have noticed that the attitude of carers to the problem and to the sufferer can make a difference to day to day life, both for the person with the disease and those trying to help. As the disease progresses, the sufferer’s brain is no longer able to function normally but to the very end will be able to pick up on nuances in behaviour and attitude of the carer and react. If there is one thing worse than somebody loopy round the bend (to express it in the vernacular), it is someone loopy and angry with it. Anger and frustration are typical for the sufferer, which you can understand readily; if your brain is not working the way you want it to, that’s annoying. If someone who is meant to be helping is annoyed with you because your brain is not working and you can’t make it work that’s very annoying. If all that happens and you have lost the words to express it, you are likely to strike out. Therefore to forestall this unfortunate characteristic of later stages of the disease as long as possible, the helper, whose brain has to work for two people, needs to modify their responses. The more calm, soothing and reassuring they can be, the happier and more confident the sufferer, the less fraught the situation, the more pleasant the day, the less likely the carer to get sick later.
If you are the primary carer, looking after yourself is exactly the same as looking after the sufferer. In fact it is more important, because if you go down, they are stuffed. All agencies will tell you that, admitted to care homes or hospitals, dementia patients go down hill. Memory is one of the first casualties of dementia. Everyone is happier and more confident in familiar surroundings. If you take a person who is struggling to understand, away from everything they know, they will be lost. It may be that a formal care facility will be the eventual destination anyway. Postponement of this situation is desirable. As the carer, you will be alarmed at how little you are able to help your demented person, once you have given up daily care of them to another agency elsewhere. You will be powerless. Care homes have their own rules, they have to, to work. Your aim, therefore, as primary carer is to keep things ticking along as normally and happily as possible for as long as possible. Happy declining years of the cared-for are less likely to make you, the carer, ill eventually. Daily strife and misery is more likely to make you sicker sooner. Therefore aim for happy.
The eagle-eyed reader (that’ll be you) may have spotted that this column is entitled ‘Resentment’. Entitled! Entitled! Who does she think she is, expecting everyone to do her bidding while she sits there like lady muck. Entitled! I’ll give her entitled, you can’t even see there’s anything wrong, I bet she could remember if she tried, and now she’s moaning and I’m expected to deal with it, as if I didn’t have a life of my own! It’s disgusting and, what’s more………………
The adopted family in which I grew up didn’t just have resentments, they dandled them, paraded them, dressed them up in bonnets and took them out for a walk. They are not alone. In any family: What she said to Uncle Ernie at Our Maggie’s Wedding can provide a topic of conversation that only dies with the participants. I was fortunate, a decade ago, to finally realise that I had married an alcoholic and had been raised in a family, members of whom had this disease also. A doctor pointed me to Al-Anon Family groups, the support organisation for family and friends of alcoholics. In the weekly meetings many topics of interest are discussed which are evident when living in proximity to alcoholics. One of the topics is resentment.
Resentment, which the dictionary defines as showing or feeling indignation at, or retaining bitter feelings about, insult or neglect, is so common in families of alcoholics, it’s almost a marker of the disease. Alcoholics under the influence of a drug can exhibit behaviour which is careless, rude, aggressive, challenging, destructive and hurtful at least. In withdrawal, the brain, devoid of the alcohol on which it depends as fuel, can cause similar behaviour. As that disease progresses the alcoholic needs more alcohol to obtain the same effect, suffers more from withdrawal and is eventually trapped in behaviour and mood swings which will damage every relationship, starting with the close family and working out.
And so, of course, does dementia. The pre-frontal cortex of the brain, which houses all of our more complex and delicately nuanced interactions is destroyed by disease.
If you ask the loaded question: Does my bum look big in this? of a healthy person whose brain is fully functioning, you may come away from the encounter glad that you have beautiful hair or unusually lovely extraordinary brown eyes. This is because their pre-frontal cortex is functioning. If you come away from the encounter considering applying for a job as a model, even though you know you are four foot ten, sideways, then their pre-frontal cortex is working very well indeed.
You will not have such luck with an alcoholic, unless they are drunk, or a person with advanced dementia unless they love you very much.
Constant, sometimes seemingly daily, damaging encounters with a pre-frontal cortex that is not working can build up resentments at a great pace. As I learned at meetings, the only person hurt by the resentments is you. Resentments can chain you to the past so thoroughly that’s it’s difficult to operate in the present. If you approach the demented person bristling with indignation about something they said, or something you had to do for them yesterday, they, who cannot express anything helpful, will pick up on your resentment instantly.
I personally believe the brain in disease retreats to infantile clues as to the demeanour of the carer. A baby knows if you are tired or cross, without you having to explain. They read your expression and tone of voice. If you had ever tried to care for a baby late at night when you had little patience left, you would know all about this. The more the baby screams, the more tired and desperate you become. The more tired and desperate you become, the more the baby screams.
When your brain is working well, you can detect and modify your behaviour to finely nuanced clues. Salesmen do it, psychiatrists do it, children do it. It is a matter of survival and the oil that keeps the wheels of society turning.
In the damaged brain, the connections that interpret incoming signals and modify outgoing communications are lost. Although the wonderful, plastic brain will be adapting like crazy, or more specifically, like sane, it cannot keep up with the destruction.
Therefore holding on to resentments about any behaviour evinced by the demented person is a waste of your valuable time. At the start of the disease, strange behaviour and unsuitable utterances may be a surprise. Caregivers may try to deal with the utterances by giving them equal weight that they would give to similar declarations coming from sane people. As the disease progresses and it becomes more obvious that these are not the utterances of a sane mind it is easier to take them less personally and respond more effectively.
It is unfortunately a marker of the disease that the closest care giver gets it in the neck just because they are there. The sick person needs to bemoan their lot, as would you with a diagnosis of dementia, and the closest caregiver is just that, and in range.
The reason I am writing about dementia and resentment now is that yesterday when I rang the SMIL, the phone was answered by a friend who was visiting. Visits from those who are not family members will dwindle as the disease takes hold but are beneficial, when cheerful, to the demented person. They are respite for the primary caregiver and to be encouraged as long as they last. In between praising the friend, I became aware that she was very resentful. She had arrived to find the SMIL in pain and mostly, sitting in the chair whispering and moaning. The SMIL has back pain, largely because she doesn’t move much. She gets up in the morning and sits in the chair. As the carers coming in four times a day make the meals, she only gets up to go to the toilet or back to bed.
The friend decided it was her job to remove the pain. She had rung the doctor’s surgery, which was closed for training and then the SMIL’s daughter, who was at work. Consequently the visit, which the friend had hoped would be a good thing she would be doing, but for a limited amount of time, had suddenly become a lengthy deed until the daughter could be contacted, medical assistance found or some other remedy applied in the unspecified future.
I could hear the resentment in the friend’s voice and I could hear the SMIL responding to the situation, which the friend was obviously finding difficult, by crying and moaning.
I chatted cheerfully to the SMIL, while the friend had a breather in the kitchen. Half an hour later the SMIL was a little improved and I suggested to the friend that she only wait until the carers turned up, which was in another half an hour. The friend was slightly mollified, so I praised her a lot for going at all. She cheered up, the SMIL cheered up but I’m willing to bet the friend will find reasons not to visit for some time.
If you decide to interact with a person with dementia, doing so resentfully or angrily will not be helpful. The ideal mindset is to do the research early in your contact. Doctors have numerous leaflets, The Alzheimer’s Disease Society has a website and offers online support. Having some idea of what is in store is helpful.
Of course you can always dodge the bullet. You can bung your relative in a home, sell their house to finance it and never visit. In my mother’s eventual care home I met people with relatives who had done just that. I’m sure it would be safe to do so if you were absolutely certain it would never happen to you.
My Victorian grandmother used to say: Don’t do as I do, do as I tell you. As a teacher I can say with great certainty that children do not do what you tell them; they copy what you do. This is how we evolved and still how we learn. How you care for your seniors is being watched by your juniors. In times of stress behaviourists tell us we revert not to our education, but to example set in our childhood. And, as they say in the Lottery adverts, it could be you!
Why dementia is on the increase is the subject of research. I think inactivity has something to do with it. During the pandemic many people who were normally very active spent the day sitting at home. For years before she became ill my mother used to get up and sit down. She had cleaners always but years ago, when there were fires to be laid and lit and no car to go to the shops in, she moved a lot more. She believed that idleness was the mark of a lady and felt it a privilege not to have to move or work.
During the pandemic when I rang SMIL and asked what she was doing she replied that she was just sitting.
All the blood in your body goes charging through your brain every seven and a half minutes. Moving helps it to whoosh through your head, defying gravity, clearing out the far reaches of your synapses, refreshing all the connections, keeping your brain alive. We are the first humans in history who can sit and watch a screen all day long. We have not evolved yet to overcome the dangers of this inactivity. Our brains are huge for our size, they utilise a fifth of the fuel we take on board each day, they require hours asleep in down mode to keep healthy. You are your brain.
I will never tire of saying how wonderful you are if you are managing this disease for someone, helping someone with the disease or just turning up now and again and being a friend. The job is possibly the most difficult you will ever undertake but few things will ultimately make you feel that you have realised your potential as a human being so fully. Don’t wait for the aliens to land. All there is, is people. Be kind to them as you are one, secure in the knowledge that what goes around comes around.
If you are at the start of this journey be like Captain Pickard on the Starship Enterprise, get your crew at the consoles, buckle up and Engage!*
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*In fact there were no seatbelts on the Enterprise, despite regular Photon Torpedoes and half the saucer section going missing. In the 60s version the crew ran backwards and forwards shouting, on the bridge, under attack. Twenty years later they were just leaning slightly. Aim for leaning slightly, if at all possible.