Today, January 25, 2009, is the third anniversary of my mother’s death. This post is about her last 6 months of life, and it ends with a question which I keep asking myself. I don’t know the answer.
My mother and my sister were meticulous about birthday and holiday greetings. They sent each other cards for every possible occasion, including all family birthdays, wedding anniversaries, Mother’s and Father’s days, Christmas, Easter, Valentine’s Day, all graduation days, and probably others that I don’t even know about. They wrote long laudatory and affectionate messages on the cards, and Mother saved every one. I’m not sure why, but I found this practice slightly icky. Occasionally, if I found a card that I thought was funny or pretty or particularly fitting, I would send it, signed, “Love, Anne”. My cards were almost always late.
After Mother was incarcerated in the dementia care place, I made an effort to be regular about the card thing, and I made a big deal about birthdays and holidays. I hoped it would give her a feeling that life was proceeding normally – or something like that. Perhaps it just made me feel better.
The day she reached 100 years was definitely appropriate for a celebration. My sister came up from San Diego for the occasion with her husband and her son, my nephew, John.
Let me digress briefly. At that time I not only had a geriatric mother, but also a geriatric dog. He was a 17 year old small white mutt, left with me 14 years previously by my son “temporarily,” while he went to medical school (followed by residency, fellowship, and finally private practice). The dog’s name was Zute. He could just barely get around.
On Mother’s birthday, June the 18th, I planned a big dinner. I got up a 5 in the morning and made everything ready. Potatoes were peeled and in the pot, ready to cook and mash, standing rib roast was seasoned, floured and laced with garlic, oven ready, broccoli was in the pot ready to turn on, salad was made and ready to dress. The Cake was bought. I don’t bake cakes. The house was tidy, the table set, the presents wrapped.
I took Zute out to pee. He fell down and couldn’t get up. I picked him up to carry him into the house, and he was in such pain that he bit me. His teeth were tightly clenched so that I had difficulty prying them out of my arm. A wonderful vet here on the island makes house calls. I called, and he came. He said Zute had “thrown a clot” and so my pal of 14 years was put to sleep the day my mother was 100.
My sister and her husband were staying at a bed and breakfast at another part of the island. But my nephew, John, was with me and helped me bury Zute in the yard. I cried as I shoveled on the soil until he was covered, and John finished up for me. I went inside in a kind of daze. Lucky I had been up at 5.
The dinner went well. Mother was a bit confused, but she adores my sister and was glad to be with her. Although she loved Zute, there was so much going on that she didn’t notice his absence.
She also had cards from the Governor General of New Zealand, the Prime Minister and a couple of other dignitaries. It is one of the Brit’s quaint customs to send those who achieve a century greetings from the Queen.
Of course, when lunch was over and presents unwrapped, she begged not to be taken back to the dementia care place. After she got back she apparently left the Queen’s greetings and other cards in one of the common rooms of the unit, and they were thrown out. Most of her birthday presents had disappeared in about a week, because people with dementia tend to wander in and out of each other’s rooms, and they don’t remember which things are theirs. Belongings get all mixed up, and the staff isn’t able to keep them sorted.
After Mother’s birthday we settled back into the routine of twice weekly lunches out. We usually went to the same restaurant, Anthony’s, because she liked the view of the marina and she could cope with the menu. But she hated going back to where she was living.
Once every week her hair was done by Linda, who had done it when she lived in Bellingham before. She was attached to Linda, who is wonderful with old people. She loved getting her hair done.
At least once a week Stephanie, her caregiver when I was away, came to see her, and that was a great pleasure for her. She loved Stephanie, who had training in caring for people with “special needs” and really loved her work. Stephanie had a genuine affection for my mother.
We almost always had a couple of doctor’s appointments every month. Many of these were to remove small basal cell carcinomas, or an occasional more troublesome skin lesion. The ophthalmologist discovered that the lens in her right eye had slipped out of place, which meant that she had no sight in that eye. I said, “If it’s not a big deal I’d like to get it fixed.” He said, “It is a big deal.” So it wasn’t fixed.
I ask myself now whether I should have pushed it further. At least I could have found out just how big a deal it was.
Months passed and we came to the next big celebration time: Christmas. The previous Christmas I was at here at home, and all my children and grandchildren came. One of my Granddaughters plays the violin, and she had played Christmas carols for the people in the dementia care unit. My mother was delighted with that. And Mother was with us for Christmas day.
But her last Christmas I spent in England, with my daughter and her family. Because I was going away we had an early Christmas celebration here especially for Mother, which included my sister and her husband from San Diego and my step-brother and his wife from Florida. I think she knew it was not really Christmas, and though I explained the reason for the early celebration she didn’t completely understand and she was afraid of my leaving. She did not to do well when I was away. Unfortunately Stephanie had moved away and could no longer visit her.
I was away for 3 weeks. When I returned the staff at the dementia care unit said that she had fallen several times, they had called the doctor, and that Hospice had been ordered.
She was not injured by the falls; she just seemed to be unable to walk anymore. I asked the doctor what he thought was wrong with her and he didn’t really answer, but said she would not live much longer.
Since she couldn’t walk and Hospice had been ordered, I decided to bring her home. There was no longer any danger of her wandering off, and I did not want her to die in that place.
It took about a week to organize everything for her to be here. I had to get a hospital bed delivered, arrange the ambulance to bring her, get set up with Hospice, get medications ordered. I visited her to tell her she was coming home. As I was leaving the house that morning to catch the ferry I grabbed a silk scarf and tied it round my neck. It belonged to Mother, but I thought, oh well, she won’t know the difference.
When I arrived she looked alert and was sitting in a wheel chair. I sat down next to her and told her I was bringing her home. She nodded, and then reached over to tweak the scarf.
“That’s mine,” she said, “I just thought I’d mention it.”
I said, “You’re right, Ma, it is yours, and I hope you don’t mind my wearing it.”
She smiled, and said, “I’m honored.”
She was dying, but she sure she wasn’t dying of Alzheimer’s, which is what the death certificate said she died of.
By the time she came in the ambulance home to the island she was no longer saying much. I had a hospital bed set up in my duplex apartment which was furnished with Mother’s furniture. She ate very little and she was in bed all day. A day or two after she arrived she could no longer feed herself and had to be fed the little she was eating. My sister and nephew came. The hospice nurse lived on the island and visited regularly. Mother’s last few days were difficult. The last word she spoke was my name when I came in the morning three days before she died. By this time we had nurse’s aids round the clock.
Even though my mother’s father was an Anglican clergyman, neither Mother nor I were believers, but my sister who is a devout Episcopalian, called for a priest to administer last rights. I thought it scared Mother. There was no way to tell whether she could understand what was said to her, but her expression did change and I thought she looked terrified as the priest told her that Jesus was preparing a place for her in heaven. I sat on the sofa and cried throughout the ceremony.
On the morning of her last day I had been unable to get an aid from the agency, so my nephew and I came early to take care of her when the night nurse left. Mother was still heavy enough that I needed help lifting her. A neighbor who was an LPN came a little later.
Mother began to be restless, and I worried that she was in pain. We had morphine, but it had to be administered by the hospice nurse, who, unfortunately, was in Bellingham at a meeting. I called her and she said she would come as soon at she could. I held Mother’s hand while my neighbor, the nurse, gave her a gentle massage. My nephew talked softly to her, and between the three of us we got her to sleep. My sister was next door in my side of the duplex.
Mother was breathing quietly, her eyes closed, when the color suddenly seemed to drain from her face, starting at her forehead. I said to my nephew, “You’d better get your mother.”
My mother, Marion Louise Roberts Daugherty, had finally, quietly, slipped away from us.
My sister came, the hospice nurse came, and the two nurses washed the body, telephone calls were made, the undertaker was called, and my sweet neighbor nurse made us all lunch.
After the undertaker had left my sister and nephew and I went to my side of the duplex, a few close friends came and the neighbor nurse who had come to help sat with us, playing her guitar and singing.
Here is the question I ask myself. When is a life no longer worth trying to prolong?
I know my mother did not want to die. She was proud of being 100, even though previously she had hated having people know how old she was. Until a couple of weeks before she died she was still able to converse part of the time, she recognized people and there were people she loved. Life still held pleasures for her. It was not she who decided the end had come. It was the medical community, essentially, that made the judgment, probably from a cost-benefit basis, that this life had reached a stage when it should be allowed to end without intervention.
I can understand this point of view. We must sensibly allocate scarce resources. Then I think, how will I feel if the time comes that someone else decides that I have lived long enough? To be honest, I think the answer might be different for me at 76 than it might have been, say, 40 years ago.
It’s always a series of hard, hard choices, and I don’t know anyone thoughtful who gets through it feeling like they made all of them right.
Hugs, Anne —
I agree with Dale, it’s a series of hard hard choices. My mother died at home with all her kids around her, but it seemed to me that there was a lot of suffering to get to that point. My sister and I no longer speak to each other because we viewed those choices differently, it’s hard on everybody.
I went through the same damn thing with my last dog, I chose to have him “put down” ten years ago and to this day I feel like I cheated him out of his rightful time allotment. The vet says I made the right decision, he had a week more at best, but she didn’t know him as I did.
However cynically we look at the medical decision to withdraw support, they too had reached that point. Unless we deliberately take the decision into our own hands (suicide, euthanasia), none of us gets to decide when to go, someone or something else decides that. When you have to be the one who decides for someone else, it’s a huge source of guilt. None of us feels like God, but we end up having to do what we perceive to be God’s work.
Sorry, editorial mistake, ignore sentence starting with “However cynically…”.
Thank you for sharing this. You made your mother comfortable and she was well taken care of. I wish I could have done the same with mine.
It would be interesting to know whether the doctor thought the lens correction a “big deal” for them, or for your mother. I know that when my mother needed some minor surgery, we were advised not to because of the likely effect of an anaesthetic on her already frail constitution.
I think you should draw comfort from the fact that it was the health care establishment that let your mother down, and not her family. You were all there for her, which is not often the case, alas.
I thank you all for your thoughts. Actually, I’m not sure that the health care establishment let her down. Perhaps the whole thing was done correctly. It’s just that there was almost no communication with anyone. I had a long conversation yesterday with my sister, because of the anniversary of Mother’s death, and it occurred to me to wonder why, since I was out of the country, they didn’t call her when the falls occurred. So many questions.
It sounds as though the health authorities operated with the casual disregard for the human element that is now the default mode for all who administrate our affairs. Individual nurses and carers confirm that most valuable quality ‘the kindness of strangers’; institutions act with bloodless indifference.
Thank you for this measured, detailed account, Anne. So many little resonances for me relating to my mother’s death at 94 at the beginning of December.
This strikes home for me as I watch my 97-year old mother slowly fade away. She alternately wants to “get out of here” and yet still wants to live as she used to, going to lunch and the movies, entertaining guests and friends. I try to indulge her as much as I can, make her happy, and keep her safe.
This account touched me, for the same reasons as everyone else here. I wonder how your answer would be different now – for me, as long as life is “worth living” I suppose I’ll want to go on, and it seems we tend to revise our estimates upward! My father-in-law felt that way almost to the end, at 99.
Mary and Beth: The will to live is very strong. I’m sure that there are some people who get to the point that they just don’t have the strength, or the pain is too great. I absolutely believe that they should have the option to opt out. The trouble is when another person or entity has to make the decision. It’s not always easy to see which way to go. I thank you for your thoughtful comments.