It has been a while since I last wrote about dementia...what it does to people who have dementia and what it does to people who take it upon themselves to care for them.
It has been three years since my wife was diagnosed with frontal lobe dementia.
I remembered that visit to the doctor very well. My wife and I walked to the clinic - a distance of about 400 yards. The thing that worried me then was that she was having hallucinations of a snake eating her face over and over again...and all this she told me with a smile on her face.
She had lost all interest in doing housework. This, she explained to me, was because she has been doing housework all her life and now wants me to take over. I thought at that time that it was a reasonable thing for her to ask me to do and though I wanted to discussed it further with her.....the way she told me made me realized that it was a "non-negotiable" requests!
All this I explained to the GP. She thought that my wife was having some pressure within her brains that was making her have those hallucinations and was causing the change in her behaviour. She immediately arranged for my wife to see a specialist at a nearby hospital. They insisted that she be admitted to the Sunshine Hospital for observation. She spent two weeks there. I was with her everyday. The one hour bus trip to the hospital in Sunshine and then another hour back to our place in Marybyrnong did tire me out for we did not have a car then...but getting my head around the fact that my wife was being observed for a mental affliction took more out of me then anything else. At the end of the two weeks we sat down with her doctors and nurses and they told us about her dementia.
That was three years ago.
Today she no longer talks. Today she can no longer walk or move without our help. Today we have to do everything for her.
I would not say that she is bed ridden but the only reason she is not in bed all the time is because we move her around the apartment as and when we feel she needs a change. She can eat by herself but I must be there by her side to ensure that she puts in one mouthful at a time, chew and swallow the food before I put the plate in front of her again for her to take the next spoonful of whatever it is that she is eating.
She never asks for food, for a drink or for anything at all. She does not tell us if the food is too hot or too cold, if there was enough salt or pepper - or whether she liked the food or not. I have to do the thinking for her. If I put a slice of bread and a cup of cold water in front of her for lunch or dinner she will eat it without a word. She will do the same thing if I put mashed potato and salmon. She might say nothing but I know that mashed potato and salmon is better than a slice of bread and a cup of cold water. I ask myself what will she want to eat...and go cook it for her....even if I am tired and not really keen to do so. If I do not do it for her...nobody else will! So this is what I mean by saying that I must do the thinking for her.
I think she understand what I say to her because I get hugs and a kiss every time I ask for it. At night I have to decide if she needs another blanket because it is cold or the fan because it is hot....and here is the hard part for me....it is easier for me to sleep through the night then have to worry about whether she is hot or cold. The reason why I do not do so is because I always worry about whether she is comfortable because she cannot worry for herself. I have to do it for her.
And this is the hard part when you have to worry about other people. Do you worry enough?
If you are tired will you still get up to make sure that she is dry so that she can sleep through the night comfortably?
If you are tired do you still get up to make her a cup of tea or coffee because it is tea time and she might just be feeling a bit peckish and waiting for her biscuits and tea...even if she has not said a word to you about it.
If you are going to the supermarket to get some groceries...are you prepared to take your wife with you...because taking her with you means you have to dress her up appropriately for the weather, put on her shoes, get her into the wheelchair and wheel her out to the car. Then you have to manhandle her into the car and then put the wheelchair away in the boot and repeat the process when you get to the supermarket and then do the same thing again when you get home. And while in the supermarket you have to get her involve in getting the groceries. You can see her face light up with happiness as she remembers that she once did all this by herself! And she will insists on holding on to the basket and have it on her lap on the wheelchair.
All in all probability what you can do by yourself in half an hour will take two hours with her. Will you take the trouble to to do it? You will be tired by the time you get home...but you know that is what you should do if you love her enough. And I do love her enough to want to do all that and more.
I am sure you all will have seen old and sick people being ill treated in homes where they have been put in by their families because it is impossible or there is no one to care for them at home. It is a sad fact of life that all the money in the world still cannot give what these ill and old people need most...love. The love of someone who care enough for them to take care of them as they would want to be taken care of themselves if they were unwell or too old to take care of themselves.
As long as I can I want to give that care to my wife.
It is hard...sometimes very hard for me to keep doing this 24/7. My son is always there for both of us - for my wife and me, and he makes it all bearable. We know that we are all closer as a family because every time we do something for my wife together, we are the better for it. We understand each other better, we talk to each other more and the most wonderful part of it all - we care for each other more. He knows when I am tired and he will take over from me whatever it is that I am doing for my wife, his mother.... and I know that I have to wash the dishes when he cooks...and we both know that my wife, his mother, comes first!
Two weeks ago for the first time in my life I had a hernia - too much physicality in taking care of my wife. It still bothers me now but it is bearable and that 24/7 work still goes on.
It is 12.35 am now. I stopped writing about half an hour ago because my wife woke up and was looking towards me...just looking and looking and looking....so I stopped writing and laid down beside her, held her hands and talked to her. She did not talk back but she listened...she is still no yet asleep but she is drifting in and out of sleep. So I slipped out of bed , made myself a cappuccino and started to write again.
To all of you who are taking care of others who can no longer take care of themselves....you all know that you do it because you do care for them. If you do not take care of those that you love ....why should any one else do it? And so we soldier on.
Today has been a good day for me and for my wife. We still have a decent roof over our head. Good food to eat. Her bedsores are almost healed. The swelling in my groin caused by my hernia, though a tad painful, has subside. My son made pizza for dinner today - he did everything from scratch - made the dough, made the sauce from fresh tomatoes and used all fresh ingredients for the toppings with the sole exception of the salami and the cheese...and of course I still had to wash up after him!
All that we need for our life we have. We do not think about our wants...only our needs...and when you can do that...then life is good.