Just over three years ago my mother had a major stroke and a minor heart attack. Life changed. It changed dramatically for her, and in a way, for me also. She was in hospital for several weeks, where during our visits, I told her repeatedly that she had to get better and come home.
After a fight with social services and the council who were insisting that she had to go into a care home, we finally managed to arrange things and beat the system.
Imagine your worst nightmare. The one where you wake up on the edge of screaming, sweating and in terror. That right there is every day for a stroke victim in a hospital ward. It must be remembered that they have no idea where they are or why. Every day they have different people crowding them, pushing them around, changing them, forcing medication down their throats. At night all the patients behave differently, but usually noisily. The size of the ward and the number of patients governs the level of noise, but it can sound pretty feral. With the hospital’s obsession over regular bowel movements, heavy medication and early hours, it’s hardly surprising that a lot of these patients start hallucinating. Sometimes those hallucinations are utterly terrifying, sometimes merely confusing. If you are a bad patient – read that as not settling or being noisy at night. You are punished. This punishment takes the form of isolation. Your bed is rolled out into the corridor, as far away from the ward and the staff desk as is possible while still maintaining some vigil. You don’t get extra blankets and hospital corridors are not heated… So, yes, bitter cold is another companion.
Upon learning some of this, we made greater efforts to get her out. Eventually agreeing to a care package from our local council – which was horribly expensive. They chewed through over 10,000 uk pounds in very short order. Something else had to be done or my mother would lost what was left of her old age. The UK “cares” for it’s sick elderly by taking away all of their possessions and money. The property is sold, the money then is placed into council trust. Any savings are likewise confiscated and controlled by the council care department. They, of course, take a fee for this. Depending on how much you have governs how much they think they should earn from it.
We had to put up with that for a year following her removal from the hospital. After this time I was able to claw our way out of the agreement and opt for private care – which worked out 75% cheaper than via the council.
Crazy.
How is it that Private care can be so much cheaper than the “free” care offered by the state?
You figure it out.
Do not get sick and old in the United Kingdom because they’ll take away everything that ever meant anything to your life.
Fortunately we managed to escape. The hospital gave her six months before my mother would be in palliative care and probably no survive much past that. This was over three years ago. Bringing her home amongst her belongings and memories probably saved her life. She was able to wander around the house (with a walker) looking at photographs, ornaments and all the other things she has that were either given to her by others or are a part of a memory. From a barely conversant and confused old lady she slowly grew back into herself. Her mind formed new pathways around the damage from the stroke. While still forgetful and sometimes struggling to remember things, she can now hold conversations with her friends, she laughs at comedy movies and enjoys her afternoon (every day) matinee of either one of her favourite John Wayne movies, or something else she hasn’t seen. She loves musicals, so we’ve collected as many as we could find and she loves them. Comedy movies, anything with John Wayne or Rock Hudson, Doris Day, various musical movies (it’s surprising how many were made) and kung fu movies – preferably with van Damme whom she seems to prefer.
She has recently started reading books – something she never did before. Previously she would buy a book, look at the pictures, wrap it in plastic and put it on the shelf. One of my first – and longest tasks was to remove the decaying plastic from everything that she had wrapped. Most of these books are new discoveries for her as she has no memory of them. Well, not having read the things that’s no so surprising. But, she has a good collection of Biographies and a ridiculously large collection of books on the British Royalty. These are now actually being read and she’s learning things she didn’t know. Encouraging, I believe, her mind to form these new pathways and create new memories.
Every day I test her a little. It’s become a game for her. I will dig through her old photographs of her extended family and put a new photograph or two – or selection on a multi frame somewhere in the house. She knows I do this and looks around when she’s going to her bedroom, or moving between the bathroom and living room. When she finds it, there’s a certain amount of excitement and we get stories of these people. Things she remembers about them, or events that occurred.
While there is still obvious damage from the stroke. She can’t walk at all without a frame to support her, needs her food to be cut and suffers from incontinence – and some of her memories are gone forever. She is much happier, and much more like her old self. I am utterly convinced that bringing her home did that. I know, inside, that if we had allowed her to go into a home she would have died a long time ago. She has outlived the early predictions from “those who know” and she has recovered far better than any of them expected. Her consultant was very surprised at the difference between the person they allowed to leave and the person who sat in his office last year chatting to him.
I’ve often heard the saying “home is where the heart is”, well, I suspect that the soul lives there also. If we are our memories and our experience, then home is what and who we are. It contains everything we were, everything we are. It made all the difference for my mother.
My life changed also. While my health is not the best, I had a heart attack five years ago, suffer from a number of other complaints (jumbled up partly in the catch-all fibromyalgia) and also have to put up with osteo-arthritis I am the primary carer for my mother. She is a stubborn, cantankerous, independent old cuss and will argue incessantly if she thinks differently. She will listen to me and do what I tell her though. So, I have to be the command and control in her life.
Early visits from the care company involved them being told by her what they should be doing. It took a while but now she looks forward to the visits from the girls and enjoys their company. One reason why I have not completely cut care ties. While she knows most of the staff who work for the company, she loves not knowing who is going to come and visit her. She also looks forward to her bath or shower and having her hair put into curlers by them.
But, as she is still quite ill and unable to do anything for herself, I have had to move in and live with her. This meant putting my life on hold. Fortunately my wife is tolerant and forgiving and this wasn’t as difficult as I expected. Though, if I’m honest, there were times when I wondered if it was all worth it. I have missed my family a great deal. Oh I’ve still seen them over the time I’ve been at mother’s house. But, I’m not living with them. It sounds odd I suppose, but there is a huge difference to living with your family and “seeing” them occasionally.
My son has moved away, he lives in London currently working towards his Doctorate (geologist), and my daughter has just got her first flat and moved out last month. This means my wife is in our three bedroom home alone. After some discussion she decided to move in with me. Of course, I’m happy with this as I have missed her terribly. But, my mother’s is a bungalow, and somewhat smaller than our house. The challenge now is to fit all of our stuff in here with all of her stuff. I will not disrupt my mother’s life any more than is necessary so a great deal of our stuff will have to be boxed and put into the roof in storage. Not the first time, probably not the last time so we’ll deal with it.
Of course, this now means that mother is going to have to learn to live with my wife. Two strong minded and independent women in the same house…. I suspect I will have my work cut out for me.
It’s not that they hate each other. But I suppose my mother didn’t like that my wife took me away. My wife on the other hand doesn’t like that my mother always “assumed” that I would do stuff when called – and like a fool I always did. What I didn’t see – you know, it’s family, you do things for family, right – was that there was no gratitude for what I did. No matter the time of night, or the absurdity of the request, I answered the call. This annoyed my wife considerably. What I also didn’t know was that no matter what I did, my mother always ran me down to others. I was never “good enough” for her high standards. Again, an irritant that drove my wife to distraction.
All water under the bridge perhaps, but there is still that lack of tolerance between them. I have no doubt they’ll find a way to deal, after all, there’s not much choice. This will be quite a sacrifice for my wife, our home of nearly 30 years is being emptied, and everything we own is being packed away. Much of it will remain packed until my mother passes on. Which, could be many years away.
Mother is 93, she wasn’t supposed to live that long. She’s strong, eats well, and her medication helps moderate her problems. Her mind has recovered admirably from the zombie we met that first visit following her stroke. I’m pretty sure she’s going to live for some time yet. She’s already looking forward to her card from the queen on her centenary birthday. We shall see.
Meanwhile, I suppose the moral of this is simple. Family is family, you should care for them because you never know what is around the corner, and what is coming down the track. The light at the end of the tunnel might be dawn, or it just might be an oncoming express. Also, never give up. No matter how bleak things might appear, things can get better. That doesn’t happen on it’s own though, it takes effort and determination. Oh, and a little strength to move through the darkness and not succumb to it.
Love those close to you. One day they might not be there.
