The continuing deterioration of my Step-mother-in-law is a prompt to write about this topic because most of us, faced with the responsibility of caring for a demented family member, are going to have to make decisions about the next step, which may well be residential care.
In the cartoon, the Simpsons. Marge says: You should be nice to your children because they get to choose your old folks home.
It’s funny because it is as true as it is depressing. As usual I’m not going to attempt to advise you, just relate my experience and research in case it’s a help to you. The reason you need to be happy with your choice is that your demented person will almost certainly predecease you and you will subsequently have to live with your choice and the outcomes it generated.
There is another possibility, you may not outlive your demented person, in which case the choice of care becomes even more crucial. I was faced with this possibility for two reasons. The first was that my mother’s location and mine were an hour and a half’s drive apart. Sometimes the roads were not good, sometimes the traffic was terrible, in the five years of commuting, once, twice or more times a week, there were some dodgy moments. We had had a terrible road traffic accident a couple of years previously on the return from my father’s birthday, I was nearly decapitated by a tree trunk, clipped by the car in front, rising into the air and heading for our windscreen. The OH rapidly steered the car into the middle of the road and the trunk, which was at least five feet long (it was a wooded area in which tree management had been taking place) glanced off the screen. For years I had problems in the car and still do have a feeling of panic if I am in the the car and a car next to me goes backwards without warning.
The second reason was that I knew after a few years of caring for my mother that I was not well. I had tests for cancer during her care which came up borderline. As you know if you are a regular reader, I have been ill ever since my mother’s death and am only now finally on the mend but still under the care of the hospital on two counts. Caring for someone can be very stressful, stress is not good for your health. My mother had previously been abusive, whether caring for someone who has been nasty to you is harder or easier than someone who has been lovely to you is difficult to say but makes little difference practically speaking if the responsibility is yours.
Therefore you need to research not only various care homes near to you or near to your demented person, if you live at a distance, but also what the policy of the care home is if the relative (that’s you) dies.
As always the finance is the sticking point, it can affect the care in unexpected ways. For a few weeks SMIL has been very difficult to talk to; very aggressive, very inclined to throw the phone away. On a few occasions the care staff advised me not to talk to her if she was swearing or shouting. Later I learned that SMIL’s medication had been reduced in an effort to save money. It has now been restored and she is able to talk again.
Why would a care home reduce the medication?
Dementia medication is horribly expensive. Pharmaceutical companies exist to make money, if dementia is everywhere (which I know from your emails) then that’s a lovely worldwide customer base. There is no incentive to work to cheapen production in any way. Certain types of medication are more expensive to produce, for example, liquid sedatives are many times more expensive than pills. I’m sure I told you that SMIL had developed a technique of holding the pills in her mouth until the administering staff disappeared and then spitting them out. If you are running a care home to whom do you give the more expensive liquid sedative? Is the the noisy one, is it the one who is on the way out? Is it the younger one? How do you choose?
There are several types of care home. My mother was fortunate to have near her a complex of care homes founded between the wars and run as a charity. Because the care home was a charity it was not allowed to make a profit. Consequently the staff were paid good wages, attracting good and experienced carers and proper career carers. Also my mother was allowed to choose her own decorating scheme both paint and carpet in her little flat with her own bathroom and her own furniture. A walk in wardrobe was built for her, when I explained how important clothes were to her wellbeing. To her last week she enjoyed dressing up and making an entrance to the sherry afternoons with the small orchestra. There was a minibus to take ambulant residents to a very nice upmarket supermarket, shops and places to visit.
SMIL’s home is run as a business and has just changed hands again. If you run a care home as a business you are doing it to make a profit, if it is your livelihood, you have to do so. Care homes are often huge houses that have become homes because they are too expensive or enormous for one family to live in. Demented people, sitting around, can become very cold. In the current fuel crisis, if you are considering turning the heating off to be able to pay for it, how would you feel if the care home you were running as a business suddenly quadrupled its heating bills? You can’t turn the heating off, you’ll kill the residents and then you won’t have a business.
One of the advantages of my mother’s care home was that they had a policy of keeping long term residents on for free if the money ran out. Moving my mother from twenty-four hour care in her own home at the cost of £13,000 a month to the care home meant that she had to be, funded, in the care home for long enough to qualify for free care if something happened to me. I did some very careful sums, whilst fending off the equity provider, who was downloading to me monthly the money to pay the care agency.
SMIL’s daughter sought help from the county council. In the UK councils have a duty of care to their council tax payers. If you access this free care, which is most likely to be someone popping in to check on the demented person in their home, you are putting yourself and your cared-for person in the hands of the agencies providing the care. Because I funded my mother’s care privately by the sale of her house to an equity release agency, I had the say-so at all times and was able to establish a dialogue with my mother from first diagnosis which meant that she actively chose at all times what happened to her. I provided booklets I had made explaining her disease to her and talked to her about it at all times. I never made a decision without consulting her, which continued up to and including her move to her care home.
I was helped by my mother’s personality. She was very difficult, always but also being a battler was not going to give in to despair and was happy to be consulted and to make the decisions.
Whatever you decide about residential care for your demented person will be made easier if you have established the dialogue from early in their disease. Running away in a panic or expecting someone else to do the work will not stand you in good stead. Ideally you want to get the trust of your demented person at the outset. They might be demented but they are still a human being with rights. At every stage you can know the right thing to do by imagining yourself in the place of the demented person.
Doing the research on care homes fairly soon is a good idea. Dragging someone demented round numerous facilities in the same day is unlikely to make your demented person easier to deal with. A better strategy might be to do the research and a bit of visiting yourself alone and make a short list, then do the discussion, maybe produce some booklets to look at and then visit the demented person’s shortlist, maybe on a few days with rest days between and then compare notes.
If you live far from your demented person you are more likely sooner to need assistance to care. Whether to move your person closer to where you live or move them into a residence in the area they are already living is a consideration. In the main demented people do best and are happiest in familiar surroundings, if you are moving them to a residential facility near to their present location it will help them because they may already have opinions of care homes near to them. If they are able to be taken on days out of the home they know the area. The landscape of their lives may have changed, but not the place. The longer their surroundings are familiar the less demented they will be and the happier, which helps you. Admittedly this leaves you commuting, but it also means you can escape back to your home.
One factor you need not take into great account is the promises of friends who are not family members, to visit or help, the count of the number of people who were going to visit my mother at home and never did so, was unimpressive but exceeded the number of people who stayed away altogether. In the care home that number dwindled. For a while her friend and hairdresser visited and then stopped. I rapidly became a hairdresser.
It is a harsh reality that if you are the principle carer the only people you can really rely on to help you are those you pay to do so. All the more reason to get to grips with what help is on offer early on in proceedings. You may wish to have a plan B in case the care home scenario becomes urgent. This could be the case if you become ill yourself or if some other misfortune befalls the cared-for. I lived in fear of my mother breaking a limb and ending up in plaster, amazingly, though she fell many times, the only thing she ever broke was the furniture.
I did say at the start of this column that I would not tell you what to do. So now I’m going to tell you what not to do. Don’t pretend it isn’t happening. The sooner you find out about your demented person’s disease and appear confident and knowledgeable, the more your demented person will trust you and relax, and then the less friction there will be. You can find out online a vast amount. Look up accredited agencies, such as the Alzheimer’s Disease Society, use your search engine to find help near you, go to the next doctor’s meeting with your pre-prepared written list of questions, go through all the leaflets in the hospital waiting room and collect any that might be helpful. Knowledge is power, which is really why I am writing these dementia diaries. I seek to empower you by my experience, so that, at the end, when the job is done you can feel happy with yourself.
We all have times in our lives when our lives are not our own. Having a glittering career, making tons of money, looking good, all these might feel like a point and purpose of life but the real measure of a person is what they do when the chips are down and they are called upon to help a fellow human not only for no profit whatsoever, but sometimes at their own expense.
If you can do it you won’t need me to tell you that you are on the side of the angels, you will know it, enough to conjure happiness with yourself from misery.
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