dealing with how it is
Ray has pneumonia again. I don't think he actually gets over one chest infection before starting another. He aspirates food into his lungs all the time so sets up bacterial infections in his lungs. Antibiotics work on the side effects eg pneumonia but you cannot vacuum out what is left of the infection in the lungs and start again. So the next cycle of infection begins.
This means I have spent a lot of time with Ray the past week, longer hours as I go earlier to sort out what is happening with the nursing, stay to feed him lunch, stay to watch him until he goes to sleep. Ray was only out in the sun twice last week. I didn't visit Monday or Tuesday as I had another attack of the runny nose virus, we were outside on Wednesday then he spent Thursday in bed tired out and Friday he started with a fever again. He will probably be in bed for the next few days. I know he is seriously ill now. Yesterday and today he did not finish his lunch, today he got only half way through the main meal and closed his eys and refused to open them. I couldn't even tempt him to try the sweets, I know when he does this things are pretty serious.
If the staff think he is becoming dehydrated they will send him to hospital. I prefer not to go down that route but I know they have legal obligations. I don't want them to come under any kind of legal cloud. On the whole the staff have been very good to Ray and kind to me so I want to spare them anything which might be too tough for them to handle. I want Ray to pass away there when the time comes if it comes in a way where that is possible, hospitals are so clinical that a death can be cold and hard for family members as well. I am not saying Ray is dying, how would I know that? But I am saying he is at this moment seriously ill.
In the midst of all this I went to a glorious wedding yesterday. The couple met on the internet, Dave is a stroke survivor, his wife is a wonderful bright, chirpy English lass and they are the best couple I have met in ages. Together they planned the whole wedding, her Mum came from England, they gathered what family they had, invited distant family and friends. Twenty seven of their friends were from the Stroke group WAGS, including the matron-of-honour and her husband who gave the bride away. Anyone who has avoided joining a stroke group please join one, you could be in the same happy position as I was, invited to a wedding.
So yesterday morning when I had a "come to see Ray please" call I was devastated as I thought I would not be able to be there. But the nurse on duty rang the emergency doctor who reissued antibiotics, told the nurse to get the local doctor in if she could and so all I had to do was sit by him while they did half hourly observations and then after I had fed him lunch and he was settled they told me to go and enjoy myself. And I did, and there was DANCING! Yeah!
This evening Shirley is coming to take me to a lunch in Newcastle, about 1 1/2 hours drive from here. It is for parents who have a son or daughter as an officer in the Salvation Army and it will be the first one I have been to since she became an officer. It is just nice we will be doing a mother and daughter thing. I've told the NH staff I will not be there to feed Ray tomorrow. I am hoping the antibiotics will start to take affect and he will be sitting up in bed smiling when I see him tomorrow night. I can but dream.
As you can imagine all of this is a strain on me, I am trying to get through it a day at a time but it is all very emotional and challenging. Do I want him kept alive at any price? Of course not. Do I want him given whatever the doctors deem would be a suitable treatment? Yes I do. To keep someone alive artificially was never an idea Ray or I would contemplate. To allow someone to die in pain is not our idea either. I guess what I want is for Ray to die with dignity and I want that for myself too.
I am not making a big fuss about what is happening,my kids know, that is all. This journey has been so long that Ray's family are no longer interested in what is happening to him on a week to week basis. Our friends are supportive but have their own lives, their own troubles. I think I just have to go on living a day at a time and not creating a drama out of life, just coping with it as it happens. A woman at our table at the wedding, also caregiver to a stroke survivor husband summed it up when she said :"Life is pretty tough and we need to appreciate special moments as they come along". That is spot on.
8 Comments
Recommended Comments