When the bombshell that is a dementia diagnosis hits, it can be difficult to access any kind of logical thinking.
From my own experience and the messages from many primary carers, after the initial shock there seems to be a determination that life will continue as it is for quite a long time. Hopefully, with early diagnosis and the right medication, maybe, except for making provision for a failing memory and the frustrations that this brings, day to day will be much the same as it has been with, perhaps, the addition of professional carers, either provided by social services, or privately sourced, popping in occasionally to check all is well, and regular trips to the doctor.
After the initial panic a sort of resignation sets in and the will to make the most of difficult circumstances. Perhaps trips and outings, even holidays, are planned and taken while such pleasures are possible.
However, a message from a friend who had recently become her husband’s carer, prompted me to remind you of the importance of plan B. The friend had suddenly become very ill, was carted off into hospital for surgery, very unexpectedly, so that her demented husband found himself, with little preparation, in a care home.
As regular readers know, SMIL has reacted very badly to the care home. At first she said she would forgive her daughter, who had moved her into the care home to be nearer geographically to where the daughter lived, as long as she could go home. When this did not happen her illness and behaviour deteriorated significantly and she is now in the high security area of the home and is frequently violent.
The leader of the private agency team that cared for my mother, who was very good at her job, described the situation of one of her charges. When she first met this person, the demented person was in virtually a padded cell, not dressed and throwing her own faeces at anyone who came near. Removed from this situation and returned to a domestic and familiar setting, with a plentiful array of carers, the behaviour changed and the demented person turned back into a person again.
This is an extreme example and a very good argument for keeping the demented person in familiar surroundings for as long as possible. I was amazed when the money ran out for keeping my mother at home with 24 hour help, how well she adjusted to the care home. It was a very posh care home. She knew some of the residents already, one was her former doctor, one was a previous bank manager. Confidence that this was the best possible option, given the people that had already chosen it, had a lot to do with her acceptance of the necessity of moving and the sherry afternoons, palm court orchestra and lift (I can still hear her delighted cry: ‘Oh Jane! I will never have to do the bloody stairs ever again!’) immediately opposite the door to her flat, all helped. As did the fact that it was a proper little flat, she had chosen the décor and had her own furniture.
But what helped most of all was the fact that she and I had had conversations from the very beginning. This was not easy. Her husband had just died, she had just had a shocking diagnosis and knew her life expectancy was limited, and she was a difficult person anyway. She was the person who had me locked up and starved when I was a teenager and had just got 11 O levels. (With hindsight I am fairly certain she was jealous.)
I could have used the opportunity of her illness to get my own back. I could have avoided anything likely to annoy her, at which exercise I’d had a lifetime’s practise.
Instead I decided that this would be just the job to grow my soul. I did research first of what was available locally in the way of help. Then, because people with dementia are hard of thinking, I weeded out the no hopers myself. Then we had several, small, not exhausting conversations, at the end of each I wrote down what we’d thought and any opinions expressed and I worked out all the finances of what was do able. I realised early on that my inheritance was going out of the window. Resources available to any principle carer will be very variable, so you need to be totally practical from day one, know what your means are and include your own availability as a resource.
When you have made plan A, which is What We Are Going To Do Now and had a little rest, you need to make Plan B, which is, How We Will Get Help For You If Something Happens To Me.
This is hard, hard to do, hard to think about, just generally not easy at all. But if you wait until circumstances overtake you, your choices will be limited, the possibility of something happening to your demented person by way of care that neither of you would wish, is increased and the resulting deterioration in the health of your cared-for person could be extreme. Demented people do best in familiar situations, as their brain changes they cannot assimilate or cope with the unfamiliar.
Therefore you decide together on plan A and plan B as soon as possible after diagnosis and you write it down somewhere that can easily be found, or you tell a family member, or a neighbour who is a good friend where to find the details. Then your job is to keep updating the choices. Check that the care home, if it is privately run as a business, has not gone bust. Keep in contact with the relief care providers. Keep your demented person, lightly, on a good day, in the loop.
Knowing what the plans are will give you that air of confidence which demented people pick up on so easily. You will find, as the disease progresses that demented people can be like small babies – they pick up on your moods. If you are tired they will cry, if you are not confident they will act up, they will have a tantrum in the supermarket because you are in a rush.
I found time and time again whilst being a carer that the only person riding out to save me was me. I confronted all the dreadful possibilities and, with the agreement of my demented person, knew what we would do if they happened.
The only utterly unplanned occurrence was when my mother’s cat brought a large mouse into the house and then lost it. By then I was so good at dealing with stuff that I found the mouse, caught it in a humane trap and let it out by the river with a complete absence of any drama at all.
This is the ideal mindset for you. Calm and in control is good for you because you are pumping fewer stress chemicals into your own body. Knowing you are calm and confident will calm your demented person and that in turn will make them more easy to deal with.