I have just got back from an extended stay at my demented mother’s house, this time with the 24 hour professional carers in place as well, in case my mother went nuts and threw me out.
Last Monday she took against one of the carers and decided to eject her. As she telephoned me in the middle of it and then laid the phone down without switching it off, I was able to overhear the entire episode and telephone the agency to get them to send a substitute. What I heard convinced me that the course of action I have chosen, to put in 24 hour carers from an agency, is undoubtedly the best option for my mother, despite the crippling costs.
When my mother was last in hospital she put all her clothes in a pillowcase and ran around hitting the other patients with it. Hard though that is to hear it must have been much harder to witness, not to mention being on the receiving end of. Can you imagine how dreadful it must be to be lying in a hospital bed, elderly and in pain, possibly connected to a drip and suddenly wallop somebody hits you with a bag of clothes?
No I can’t imagine it either, nor how I haven’t been sued for not being in control of a loose and dangerous parent but I did get an insight with the telephone call. For about half an hour my mother screamed and cried, ranted and shouted, threatened the woman and told her she was shameful, that she had no business in someone else’s house, that she should get a home of her own and so on. She repeatedly screamed, sobbed and demanded to know why people were being so cruel to her. Listening to it was incredibly distressing, especially as I realised this is how she must have been in hospital. In half an hour another carer arrived and calmed my mother within two sentences. Subsequently the manager of the agency stayed up all night to re-roster for the month so that my mother need never see the carer that she took against again.
It is a feature of the disease that sufferers form irrational dislikes. In fact, we all do but if your frontal lobes are working you subdue them and avoid placing the office worker you hate forcibly on the bill spike, or whacking the person on the bus who looks at you all funny, with your briefcase. Once your brain has disintegrated, taking your frontal lobes with their social controls out with the rest of the waste, you’ll voice every nasty thought you ever had. If you aren’t an angel to begin with there will be plenty.
The other feature of the disease as it advances is a sensitivity to geography. Sufferers removed from their familiar surroundings can become lost and aggressive. So I knew that in a home that wasn’t her own my mother would be as I heard her on the phone, much of the time. I am also pretty sure that a care home would not get rid of a member of staff just because my mother didn’t like them. Moreover, as so many of my mother’s former friends have stopped visiting, I don’t suppose more of them would take the trouble to go and see someone permanently locked up and raving, it would be too upsetting.
Thank goodness for the agency, having professionals who have seen it all before and are trained to cope with the worst excesses of behaviour and contain them, helping you, is a godsend. I wouldn’t feel able in a hospital or care home, where there were many patients to be looked after. to take up the amount of time needed for consultation, though I have to say the National Health has turned up trumps again. We have seen two doctors: the doctor at the hospital, whose speciality is geriatric medicine and the brain specialist and his visiting nurse and they have both been wonderful, unstinting in their time, professional and caring. They all keep each other and my mother’s regular family doctor and me in the loop, so I know my mother is having not only consulted care but considered care.
Would that she could appreciate it. I decided to visit and stay this time, not just to see how she was but to try and persuade her of the need for carers at all. In a groundhog day sort of way I have done this several times. There was a phase where she seemed to be living with some kind of ultra-fast karma; one day she would complain she didn’t need anyone and the next day she would fall over. Currently she has been saying she knows she has been ill but once she is better she is going to get her life back and throw everyone out.
For many months I avoided telling my mother what was wrong with her. I consider that the normal progress of the disease in a nice family would involve the family finding out what is wrong ahead of the patient and attempting to protect the patient from the knowledge to some degree. I was keen to keep the word ‘dementia’ out of my mother’s sight for as long as I could, first because I knew she was terrified of the disease and second because she was recently bereaved and nobody needs that much bad news at once. I was aware that she had had a clinical depression in the later stages of my father’s life and didn’t want her to revisit this in bereavement if at all possible. For many months I progressed the information slowly, with the agreement of her doctors. It was apparent to her from the start that she had memory problems, so it was easy to refer to these initially. Then, when it became obvious that there was a further problem, I talked about ‘hardening of the arteries’ which she knew her mother had but which never came to full fruition, partly because of the frugality of my grandmother’s diet (she lived through two world wars) and the hardship and physically exertive nature of her lifestyle. She could remember seeing the first motor car ever in her town – everyone stopped what they were doing and ran out to look. Eventually my grandmother’s heart gave out before her problem with remembering names became anything else.
My mother, on the other hand, has sat upon her sit upon, exercising nothing but her critical faculties for many years. My father used to get the car out of the garage for her and would have carried her from her very easy reclining chair into it if he were strong enough and no doubt she would have let him. She has also spent the sixty years since the war making up for butter being rationed; her favourite food is toast and butter but not necessarily in that order. She is the most convincing argument I know for limiting the fats in your diet and taking your daily exercise.
The time she first suggested throwing the carers out, a few weeks ago when she was convinced she was running a guest house and they were all students, I thought it time to elaborate upon the other term for hardening of the arteries and what it really meant. I found a good website that used that same term, hardening of the arteries, in a series of easy-read articles about stroke with simple but informative pictures and printed that off and loose leaf bound it so I could show her what I was talking about. That time we had the conversation and I mentioned dementia for the first time. She understood, was upset but accepting and wrote herself a letter so she would understand in the future.
This phase of understanding lasted a good few days and then we were back into groundhog day and she refused to read the letter and carefully lost it. Almost at once she entered a state of denial and insisted that there was nothing wrong at all.
Completely aside from dementia, denial is a normal human response to any very bad news. When we hear of press conferences where perpetrators of dreadful crimes roundly deny any involvement, they are not just being duplicitous, they are entering a state of denial, a protective mechanism which the brain exercises entirely unbidden, to smooth out the lumpy bits of life for us so we can go on functioning in difficult circumstances.
The crucial thing to understand about denial is that you can only deny that which you know because if you don’t know it you’ll either not react or you’ll ask questions, what you won’t do is immediately and frequently declare it isn’t so. This time I went to stay intending to introduce the idea that a return to normal health was not to be expected and that therefore the carers would be needed. The minute I got my mother alone, before I had time to speak she said she didn’t know when she was going to die, it was no use asking her. This clear indication that she was aware of her situation, despite all appearances to the contrary, led to a short, gentle exchange where I agreed that no one could know that but recovery was not to be expected and help was and would be needed.
After a quiet evening and night she arose wonderfully belligerent and became nastier each hour. By lunchtime she was pretending to whip me, something she has previously only done in private. She has also, since I was a child, put her fingers to my head and shot me. Now she had become a mafia boss and kept mimicking me and speaking in a silly voice with words she had decided I was thinking, then smiling a fake smile saying ‘Capiche?’ and then whipping me again.
Well you shouldn’t shoot the messenger but perhaps you can only put the gun away if your frontal lobes are in good order.
On the phone this morning she was back to being in charge, throwing the carers out and criticising everything in sight and out of sight. The food was wrong that I had sent and delivered, the delivery charge was shameful, they should do it for free, the weather was bad, her clothes were too big, the house was too cold or too hot and she had no doubt I would visit again only to suit myself not that she cared and why didn’t my husband stay. (There isn’t enough money in several banks to bribe him to do so is the answer to that one.)
It’s hard to tell in repeated groundhog day if you are making any progress. All that I find one can do: is to behave and act according to your conscience and treat every conversation as new for you as it is for her. To remember always you are dealing with someone very sick, whose brain is damaged and speak accordingly, though never condescendingly. The whole undertaking is a major exercise in not harbouring grudges or bearing resentment; though this is definitely a way of polishing your soul it doesn’t make letting go after the event any easier. I still react to verbal abuse as though a rational person was delivering it; even though I don’t respond to it, the abuse still hurts me. It’s hard after a lot of it to get a good night’s sleep or to stop rerunning it in your mind.
As Kipling remarked ‘If you can keep your head when all around you are losing theirs and blaming it on you……………………………………
…………yours will be the world and everything in it, or what’s left after the carers have been paid.
However, for anyone reading the dementia diaries for tips, the one to be gleaned here is that if you are the primary care giver, you will be reviled by the patient, if you are the bearer of bad news you will be shot and if you have to deliver extra care you will be rejected with opprobrium frequently and forcefully. The answer is to get your own support structure in place firmly and early. There is one of the carers who began visiting once a week to take tea with my mother back in the spring; my mother now thinks she is an old friend, if the situation got worse she could go in and be accepted as a friend rather than a carer. The agency workers have had a long opportunity to get to know my mother and be able to help her when I cannot. By now I have sufficient confidence that I have made the right choice and can walk away when I have to and they can get on with the care while I recover.
You really cannot rely on family members or friends to help, my mother is down to about two of them, the rest have fled. If you assume the position of primary carer, make your support group proper professionals, you will need them. Once they are up and running use the time for your hobby, your job, your time out, so that you can last the distance and make sure, as much as is possible, that only one of you loses their mind and that it isn’t you.
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JaneLaverick.com – so tired.