Tuesday, April 21, 2015

Caring for the dying: benefit from my hindsight on hydration and decisions

How do you keep them alive? What do you say? Do you leave them in hospital or get them out? Is Do Not Resuscitate the kindest thing or handing the hospital a death warrant?

I've had four lots hospital visits, been bystander at two decision about do not resuscitate, been to four funerals, and been executor of two wills. Four people have died, my mother, father, uncle and aunt.

My Uncle In Hospital
  My uncle went into hospital. He was told an operation would prolong his life, from life expectancy of two or three months to two or three years. He was a beloved and unforgettable character - he would go home by taxi or bus during the day to collect his post and look innocent and surprised at night at us visitors when nurses had asked us to search for him.

Organ Donation
  He generously wanted to leave his body to science or for transplants but the hospital had no forms and people told me that organs of elderly people are not needed so much as those of the young and fit. I later read that if you have cancer you should not be giving organs for transplants.

No Touching
After his operation he was in intensive care. I was told not to touch him without wearing protective gloves because he had MRSA.  My father, in his nineties, was at even greater risk of catching something from my uncle or me. So uncle got no comforting touch from visitors.

Communication
Communication was difficult. You had to stand at the foot of the bed so he could see you without turning his head, in order for him to lip-read. I didn't realise he was lip-reading until after his death when I found books on lip-reading.

Uncle was also known to be hard of hearing and the hearing aids were missing. Later he recovered enough to point, or we asked a nurse, and we located his hearing aids on the windowsill.

Lost Ashes
When he died I received the ashes in a green plastic urn. I hid it because my throwaway family would immediately have chucked it out as being morbid and a waste of space. I was supposed to put his ashes in the grave next to his wife from whom he had been divorced many years. I am still hunting for the ashes, wondering whether the urn has been moved or thrown out.

Saving Ashes
Nowadays you can buy pretty painted urn covers, which look like works of art, which you can place in a display cabinet.

Giving Bad News
When my father was in hospital the doctors asked if I wanted them to tell him he had terminal cancer or whether they should tell him. I thought they would do it better. I was wrong.

He immediately said he'd had enough and wanted to die. So they stopped making any attempts to keep him alive. (Or in my view, comfortable.)

Dehydration
My son had already warned me that dehydration results in swelling of the tongue. This means you cannot drink or swallow food. To be that dehydrated must be very miserable. Not just the mouth, the whole body must ache and you must be very depressed. I know that a glass of water revives you fast when you are feeling low.

He found it hard to swallow. He had thrush in his mouth, and feet. I asked them to treat his feet. That treatment might have helped his mouth. A chiropodist or food specialist had a door with a sign only yards away. The doctors said he could be treated for the thrush after he left hospital. He never did.

Exploratory Surgery and CD
He went into hospital with pneumonia. That was cured by pills.

But I allowed them to do exploratory surgery to see what was the matter. They said it was too late, especially given his age, 93, to operate. But he caught Clostridium difficile in hospital. I thought that was like MRSA and you caught it from other patients, even yourself, and hands not washed. Then, five years later, my doctor's surgery nurse said CD comes from surgery.

Student Examination
I also allowed a group of students with the doctor on a visit to examine my father (with his permission). I thought that we should keep in with the staff and be co-oerative, both out of gratitude and as a precaution to maintain goodwill. I also wondered whether with more thoughts and discussion, we would be more likely to get an accurate diagnosis of the problem and suggestions for treatment.

I said that anybody touching him should wash their hands first. They looked most surprised. Given that he ended up with CD, I now regret letting them examine him at all. The more the merrier does not apply to spreading germs to the vulnerable elderly, especially when they are already sick.

Cost of Care And Nurses
My father kept asking to leave hospital. The staff kept warning me of the prohibitive cost of home nursing. Looking back, I would have sacrificed any amount to keep him alive longer. Furthermore, if you are paying inheritance tax on a parent's estate, and fees to lawyers to administer probate, you are better off paying for the nursing care, because half the cost is from money which would go in tax anyway.

Transfer From Hospital to Home
When my father was in hospital I did not know how to get him out. I did not know if I needed permission, whether I would get help with a wheelchair or ambulance.

Looking back, I think I was too shy to ask. It seems absurd, doesn't it? When to transfer, or how to transfer. Later I was told that a hospital has to let you walk out, and if you cannot walk, to assist with a wheelchair or ambulance.

If I had transferred my father to a private hospital, I could have asked them for advice or help to make the arrangements.

Dehydration
Unfortunately either the season or the stress meant that I caught flu. I was too weak to drive to hospital. (I could have called a taxi.) I was afraid of taking in germs to my father or anybody else. I could have called a taxi. When I tried to offer my father a sip of water I realised he could not drink and urgently needed to be put on a drip.

Guilt and Reliving Deaths, Dramatic Moments and Decisions
Feeling guilty, going over and over the circumstances of you loved one's death, these are common experiences even when all your friends and medical staff tell you, 'You did everything you could'.

Information for Survival
Some people say, what will be will be. I think my family survived as long as they did because they wanted to survive and guarded their health. My father lived to 93. I only wish I had kept him going longer. I hope my experiences will help you be better informed in order to make what you feel is the right decision.







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