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.
Hi Meghin, a person with dementia (Alzheimers) will not actually enter the dying process until they are not eating enough calories to maintain their body. When eating diminishes you can relate their progress in the signs of weeks before death that you find in my booklet Gone From My Sight. Have you read my booklet How Do I Know You? It is about dementia at end of life. I think you will find it helpful as you travel this journey with your father. My blessings are with both of you. Barbara
I read your book Gone from my Sight, The Dying Experience. My grandpa has alzheimer’s and has not spoke or know who we his family are for around 4 years. How do I relate this book but with him being completely incompetent? Amazing read. Plan on purchasing your collection. Need to learn how to prepare myself for that dreadful but blissful day coming
I’m wondering if the patient is showing signs of anger and confusion because she may be having pain from the cancer.
Life itself is a terminal illness with a limited prognosis. To single out Alzheimer’s (or any illness) as being separate from human existence and that it’s not terminal distracts family caregivers from accepting death when the time comes. Similarly, Infection/sepsis can be terminal and a blessing if palliative (compassionate) care was better understood by the powers that be.
Hi Sue, thank you sharing your experience of your husband’s dementia with me. You are certainly right, people can and do die from dementia with no other diseases present. I consider it a terminal illness with death the end result. Why doesn’t the medical profession recognize it as such? I don’t know except that the medical model has a difficult time recognizing that death is a part of living and we all will be unfixable at some time. Oops my frustration is showing! My blessings are with you. Good for you for having the goal of helping with hospice when your 13 months are over. You might find my booklet My Friend, I Care helpful in your grief. Barbara
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