Dear Barbara, What is your experience dealing with Alzheimer’s and the dying process. It's hard to know if the disorientation is dying or Alzheimer's. Also she doesn't seem to have the awareness of dying. She's angry, confused. Physically she seems to be in the 1 to 3 months. She has cancer. Her oxygen is 94; her blood pressure was 120/55. She is on hospice.
Dementia isn’t a terminal illness in that it doesn’t have a limited prognosis. It is like dying from old age, it takes longer. Alzheimer’s, or any form of dementia, is difficult to gage as to approaching death. The personality changes and withdraws often over a period of years and sleeping habits are unpredictable as well. The only sign of approaching death that we can use for determining the closeness of death for someone with dementia is to look at their eating habits. When a person is not taking enough calories for maintenance, (under 1200 - 1500 calories) on a continuing basis because of difficulty swallowing, forgetting how to swallow, or choking then they begin entering the dying process.
This is the time we must make the decision of whether we should insert a feeding tube to keep the calorie intake at an appropriate level or not. If the decision is no feeding tube then we can know that death is approaching in a predictable manner. Part of the normal way a person dies is to gradually stop eating over a period of months. When the decision to not insert a feeding tube is made we always offer food (being aware of choking), but we don’t force food. Offer and accept what is eaten or not eaten as part of the normal dying process.
We eat to live, and if the body is not taking in enough calories for maintenance then death will come. In your description you do not mention food so I cannot determine if she has entered the actual dying process. Her blood pressure is good which tells me she is not dying soon. The other factor here is her cancer. The dementia takes precedence over the cancer when it comes to signs of approaching death. Sleeping and withdrawing (which are two of the signs of approaching death from disease that can give us guidance) can occur with dementia years before death approaches. It is only food intake that we can use as a guide when dementia is involved. I am pleased to see she is on Hospice. They can be a support and give you guidance during this uncertain time.
Something More about... Alzheimer's, Cancer and Hospice
I encourage anyone who has a friend or loved one with dementia of any sort to get How Do I Know You? Dementia at the End of Life. The aim of this booklet is to provide information regarding approaching end of life to those people, family and significant others, who are caring and making decisions for someone with dementia.
6 comments
My husband died of Alzheimer’s on Jan 25th. I was his caregiver at home for 10 years. It is true that he cycled eating, not eating, hallucinating, sleeping and not sleeping. However, in November, there was a definite change in his eating. He wasn’t as hungry and I had to help him more. He could walk less and was more withdrawn than ever. We still did not know he was end staging until 1 week before. Then he couldn’t eat only a few bites of baby food. I never forced him. He stopped being able to walk and talk and everything. Barbara, I’m I huge fan of yours but did not receive your books from Hospice until 4 days before he died. I would have known for sure earlier that he was end staging. My nurse didnt know either. I took him to the emergency room 6 days before death to make sure. I believe that Alzheimer’s goes further than they just cant swallow. I believe that the brain controls all body functions and my husband reached the point where the disease shut down his organs. ALL of them were failing at once—kidneys, heart, liver. He had no cancer and no heart problems. But he had diabetes and it was controlled. Alzheimer’s is fatal and I am bothered that no one carries it to the point that it CAUSES death! My doctor did not put Alzheimer’s on the death certificate as the primary cause of death which upset me greatly! It was a long struggle caring for him. He died very peacefully at home, on Ativan and morphine the last 3 days. As you say, it was very peaceful! He was with Hospice home care for 10 months. I will be volunteering extensively after my 13 months bereavement. Your book, The Last Act of Living, is amazing and it helped me to heal in my grieving process! Thank you!!
Leave a comment