Carer Al reflects on his experiences of caring for his wife, J, who has Alzheimer’s, with thoughts for other carers, and insight into the difficult decision, latterly, of her moving to a care home.
Now that things have stabilised, a little, I thought I would reflect on the past 12 months and try to pass on some of the lessons I think I have learned.
My wife, J had been told about 12 years ago that a brain scan indicated the likelihood that she would develop Alzheimer’s. Her mother, grandmother and sister had all developed the disease but at the time, around 2010-2012, many in the medical profession were sceptical about heredity being an important factor. I think that has now changed.
Early indications give valuable planning time and opportunities for discussion, so don’t bury your head in the sand. At the same time don’t let the thought of Alzheimer’s drive or limit everything you do, or you will miss out on some important life events.
Many older people downsize, as we did on our return from overseas, if you are thinking of moving though, do bear in mind that an extra room for a live-in carer, a professional or a relative, may be a sensible investment.
Wherever you live get to know your neighbours, be pleasant and helpful to them and you will be repaid by people offering to look after your loved one when you need to leave home for an hour or two. They will also bring back the person with Alzheimer’s home, if they develop a ‘wanderlust’ and many do.
Almost everyone is sympathetic and understanding because these days most people have a friend or relative affected by the illness. Don’t go into denial about the illness or you will lose the support of others.
Realise there will come a time when safety considerations may have to take priority over the person’s desire to continue potentially dangerous activities, such as driving, cooking, solo walking or sport. Explanation and discussion are usually better than prescriptive bans but be prepared that you may not get a logical response to your suggestions or comments.
There comes a point where you begin to realise that you cannot continue as a sole carer and that a care home place will eventually be necessary. This will be a difficult decision but an almost inevitable one as the illness worsens the demands put on you will become ever greater.
I took on a daily carer for that important first hour of the day when bed clothes need changing and your loved one needs help to shower and dress. This still leaves you with the other 23 hours of the day to demonstrate your love and affection.
Leaving aside the important financial decisions that you will have to make you must analyse what you want from a care home. In our case I settled on safety, security and compassion as the primary needs followed by location and facilities. These items may seem obvious but when I started looking, I was not at all sure what I was looking for.
You should start this work early and develop your views as time goes on, often changing your priorities in the light of changing needs. You should also realise that your own ability to make decisions on care can be affected by the stress you will find yourself under. My doctor advised me several months before my wife went into care that I must make a decision, or I too would end up seriously unwell.
I listened but found it very hard to accept that things were getting out of hand. Eventually I became ill and a rapid decision became essential. the prior work then paid off as I had a small selection of homes that I thought could provide what we needed. Trying to sort out such problems in the week before Christmas when you are seriously unwell is not to be recommended but it can be done!
Accept that whatever happens you will blame yourself and the balance between relief and guilt will vary over time.
Do involve your local Social Services, if they are as good as the ones here in Mole Valley you will be helped through the legal maze of Attendance Allowance, Capacity Assessments, Best Interest Decisions and very importantly use of the Lasting Powers of Attorney. They can also help in explaining some of the financial implications.
Now that my wife is in fulltime nursing care friends say “Oh that must be a great relief, now you can restart your life”. If only it was that easy!
I am slowly re-joining a society that I left some years ago when the personal care requirement precluded participation in many activities. People will be pleased to hear from you but do remember they have their own lives and family matters to attend to.
(Please note, the image is from a photo library.)