There is a shortage of advice for carers, particularly those, like me, who did not start out in life with the idea that we would be spending the best years of our lives stuck in the house with an ill person, or people in my case. I will give you a short history before I continue.
I finished up with postgraduate study in 2003, as by this time my father was bedridden and my mother, despite having the help she was entitled to, was struggling. I continued to work as many hours as I could, some jobs being completed on the way home from other jobs, and found various inventive ways of fitting in as much work as I possibly could around providing support for her in the form of looking after her property and lifting my father when necessary. This still meant that I had to work in temporary, hence easily ditchable employment. My mother would not admit that she required help, and so the siblings found it quite easy to belittle my efforts alongside providing no help. Just before she succumbed to a stroke I was working full time as a banking consultant, part time as a government research interviewer, and doing some corporate research during mealtimes. A total of about 17 hours a day, six days a week, the remaining time being spent on maintaining the house and gardens and letting her get out.
My father became steadily worse over the five years between 2002 and 2007, and it was impossible to take the reins due to the fact that my mother was extremely difficult before her stroke. When it became apparent that she had a heart problem, I spent two years arguing with her as I tried to tell her to go to the doctor. It was obvious that she was not going to take this advice, and again the siblings ignored my entreaties to invite her to their house to give her a break, or advise her to go to the doctor as requested. Therefore it became pointless to speak to them at all, since it was clear that they were not prepared for their parents dotage, nor willing to listen to me at all. I have never had much of a relationship with them, since my unexpected arrival over a decade after they thought the family was complete, came as a bit of a shock to them, so it was no great loss. Their subsequent behaviour has been so poor that I frequently have cause to think I would be better off with no siblings at all. These are middle class, respectable people who are in late middle age, so this came as quite a shock to me, never mind anyone else.
There is no legal or supportive body to go to if you are in this position. I have been told by several care homes that I worked in on a temporary basis whilst trying to help my mother, that it is entirely normal for the absent children to attack the unfortunate carer, and there is no help for you on this basis at all. You have the responsibility, you have the loss of your own life, and you have the daily drama of caring for your relative. The last thing you need is to be attacked by your own family. Having been through a particularly bad example of it, I can tell you that the only backup you are likely to receive in the face of such attacks is to be told, after investigation that you are off the hook. You are basically at the mercy of adults who are functioning as particularly nasty children.
My advice is to opt out completely. Despite what you may be told, there is no reason why you should make yourself available to be attacked. My course of action was to ensure that I was notified of the impending visits in order to avoid them. For the first few years of looking after my mother, I simply avoided the house during these visits. Recently, I have been more inclined to guard my belongings, and ensure that my mother is not left alone as she tends to forget what she has been told within a few minutes. I get no time off at all. The vulture-siblings are not aware that she rarely gets through a night without needing something, and they have chosen to be so unhelpful and vicious that I am trapped in the house 24 hours a day, 7 days a week. This is preferable to accepting help from a third party, with associated worry garnered from years of my eldest sister seeing any third party involvement being an opportunity to accuse me of things I have not done.
Considering the amount that each carer saves the taxpayer, in the course of their poorly paid excuse for a life, and the associated knowledge of the person being cared for, who is almost always receiving far better attention than they would in the conveyor belt care home system, I find this lack of support astonishing. Yes, there are courses available, should you need them, to help you react correctly to the situations with the person being cared for, there are day care facilities provided by local bodies where you can drop off your patient, should they agree to it, but nobody cares if you are persistently victimised by your own family. Nobody cares that your life has been destroyed, and nobody cares about your privacy. You can, if you do not care about privacy, get help from a third party with the direct daily activity of caring, but in my position, with two vicious sisters, this is not at all helpful. I have learned over the years to either take my mother with me, when I do need to go somewhere, or schedule it at times when it is either impossible or unnecessary to inform them at all. All this to protect my mother and her assets from attack by her own family.
You will find that your house becomes messy very quickly indeed. It is amazing how much mess one tiny woman can generate. Your family may also attack you on this basis, especially if you lack the funds or inclination to redecorate frequently. Personally, I spent several years decorating whilst caring for my parents and neighbour, and became a familiar figure, covered in paint, in my local area as I was rarely out of my painting clothes. I am about to have to start again, as this house is large and I keep it on a five year cycle. As long as you enjoy this process, it is something you can do whilst your patient is sleeping or watching TV nearby.
You will find yourself crying a lot, particularly if you are female and are looking at a life with no children or opportunities to go out. This means that you cannot even hope that a gallant gentleman will save you from destitution in your dotage, so you have a bleak old age to look forward to, whilst your selfish relatives roll around in the money they were able to make by being selfish. The only good part about this element is that you are forced to be inventive. Towards the end of the period of my being able to work, I worked from home to avoid claiming the benefits I was entitled to. This is considerably easier to achieve than it used to be, thanks to the internet, but particularly with a progressive illness, you will have to give this up eventually in favour of something that you can either do whilst providing care, or nothing at all. Be prepared for some dark moments as you realise your hope of the life you previously worked for is diminishing with time.
As your patient’s illness progresses, it will become increasingly difficult to keep up with even the simple things that you were able to easily cope with, so it is wise to be extremely mean as you may have to draft in a gardener or painter that you did not need to begin with. The time you spend in a chair with your patient is still valuable to them. If you are fortunate, you will have some means of utilising this comfort companionship. Artwork is particularly good for the elderly generally, so if you can find some creative spark, especially craft related since you can get them to help, this is a good way of reducing your inevitable feelings of helplessness and loneliness. Again, being online, you can find various places to dispose of what you have made once you have come up with a product. Cooking may be your thing, but make sure you have an audience to consume what you have made if this is the case.
There are some examples of fairly high powered people who are in exactly the same position as you, and who have admitted that caring is the hardest thing they have ever done. You have to be tough and self aware to pull off the whole caring thing, and being a nice gentle person will not cut it when the person you are looking after becomes difficult.
Some days are horrific, and you will feel like the worst person in the world because you did not cope as well as you should have. You are a person too, so it is important to remember that the scummy person criticising you has no idea what you are going through, or that nobody becomes an angel at age 70. My elderly best friend was one of the most evil, fun people I have ever encountered. She would have been fun at 30, and she was fun at 89.
There are times when your patient will start a fight out of boredom and frustration, and it is in the nature of dementia, in particular, that they will play people off against one another for sheer spite. It is in your interests to remain out of it, for your own sanity as well as ensuring that your patient does not inadvertently catch themselves in the crossfire. There are very few cases in which carehomes are the best option, so even if you have a bad month, it does not make you a bad person. Two years ago, my mother did not let me sleep for more than two hours for four months. It was appalling, but we got through it, just as we got through her stroke, the death of her husband and brother, and the dishonest and despicable behaviour of her children.
Finally, pat yourself on the back for your commitment despite all this. You are probably stupid for being so softhearted and allowing everyone to take advantage of you. Congrats for having what it takes to tolerate the bullshit that goes with it.