Home and the dying

A friend of ours died last week of a condition called Levy's syndrome. It's one of those awful brain and nerve deterioration diseases. It is described as a cross between Parkinson's and Alzheimer's. People who have it lose both motor control and mental abilities. The first apparent symptom, a problem with walking, appeared about two years ago. Within a few months he began forgetting how to do simple tasks, such as how to get water into a drinking glass. The progress of the disease is not constant. Some days he was fine and lucid and relatively in control. Other times he had hallucinations or could barely walk.  Last October, he had to be put in a care home because he needed full-time professional nursing. About two weeks before he died, he lost the ability to swallow and had to be fed through a tube. His white blood cell count was over ten times the normal level, and his kidneys ceased to function.

His wife had to make some terrible decisions. When his kidneys failed, she was given the option of dialysis, which would have meant loading her husband into an ambulance, transporting him for nearly an hour to a dialysis centre, and then returning him to the care home in another ambulance. She was told that dialysis is painful and that it would stave off death only by a few days, a week at most. She decided against that. I suspect that, like most of us who have had to care for someone who is dying, she concluded that further treatment would be cruel and that allowing the person to die is the final kindness one can do. That knowledge doesn't make the decision easier.

The doctors and the nurses can only outline the options and try to present them as factually as possible. The standards of their professions don't allow them to counsel allowing the patient to die. Our priests also cannot condone assisted suicide or murder through neglect. Their standards tell them to offer prayer and hope and to counsel acceptance. These professionals' ability to help one decide is limited but they do acquiesce, silently but efficiently, when they feel the decision is right. Friends and relatives can be a bit more open, but the burden always falls on the spouse or children to make the final decision.

All of us know the rationalisations--'It's what he would have wanted,' etc. In truth, guilt and relief go hand-in-hand. It's difficult to avoid that thought that in ending someone else's suffering, we are also ending ours.

The care home was a torment for our friend. By the end he had forgotten most everything except that fact that he wanted to be at home. That was often the only thought he had. When we visited (which became harder and harder to do), he would repeat over and over, 'Take me home. I want to go home.'  He knew his wife almost until the end and knew that she was the only person who could decide to remove him from the care home. He sometimes became very angry with her that she wouldn't do this for him. When we spoke with her after his death, she focused on the fact that her husband had wanted to go home and that she hadn't been able to grant his wish. She felt guilty about that--unnecessarily. All we could do was to assure her that she had made the right decision.

One of my aunts spent her last weeks in a care home. She, too, was constant in her demands to be taken home. My father chose to die at home rather than in a hospice, even though he knew that it meant a lower standard of care. People with terminal illnesses seem to have this desire to be somewhere they identify as 'home'. Even when the person knows that death is imminent, 'home' seems a refuge. That feeling is understandable when the other choice is a hospital or a care home, which are gruesome at best. I have been inside only one hospice. It attempted to provide a 'homey' environment, but that made its institutional nature all the more evident. One's lair or den seems the best place to die.

All this prompted another discussion between Lewis and myself, assuming that we will have a choice. It's made more complicated in our case because we are not legally spouses in many places and our legal right to make such decisions would not be recognised. We have living wills, but again those are not legally binding in many places. Niamh, I know, would accept Lewis's decision. Lewis's nearest relatives are his two siblings, one of whom lives in California and the other in Boston. Lewis has told them of his wishes. I don't think there will be a problem, should it become necessary. The worst would be to be kept in a twilight state because of a legal problem. I hope we can avoid that.

A related thought: I have read that married people live longer. Of course, these statements take heterosexual couples and marriage as norms. Long-term unwed heterosexual or same-sex couples are not factored in, as far as I know.  We seem to be counted automatically among the lonely unweds. The implication of most of these studies is that marriage makes people satisfied and happy, and that happy and satisfied people live longer. I think there might be another explanation, and that is the power of nagging. A partner (married or unwed) is likely to encourage the other partner to seek medical help if there is a problem.

I had my annual check-up a few weeks back. My doctor's office asks people to turn the mobiles off. I had barely exited the office and turned my phone back on before Lewis rang to ask if I had remembered to show the doctor the dark spot on the skin under my right eye. Had I mentioned the stiffness in my legs and asked about post-polio syndrome? What did the doctor say about the arthritis in my right thumb? Was my high blood pressure improving? A week later, I no sooner walked into our house than Lewis handed me a letter from my doctor with the lab results and ordered me to open it and show it to him. The doctor said that there were no problems except for a slight dip in the 'good' cholesterol reading and that I should get more exercise and to see him if my legs got worse. More nagging. Because of my blood pressure, salt has become a dirty word in our household, and soda bread has been banished. I am sick of hearing about post-polio syndrome and being watched for problems with moving and having my stiffness fussed over. (I'm getting old, Lewis. Some stiffness is normal.) It's great to have someone who cares so much and I hope that Lewis is healthy, but I would like him to have at least one small problem that I could nag him about.