Barbara, Can you finish the portion on dementia and dying that was not finished on your The Art of Manliness podcast?
There are just two ways to die, fast (sudden death) or gradual (old age or disease). Fast death just happens, without warning. Gradual death has a process to it. If it didn’t it would be fast death.
The process of a gradual death from disease takes two to four months (old age with no disease takes longer). Three things are the sign posts that say the dying process has begun: decreased eating, increased sleeping, and withdrawal. These three things are on a continuum, gradually beginning in months before death and going right up to the moment of death.
Weeks before a gradual death there are signs we look for that come in addition to decreased eating, increased sleeping, and withdrawal. On this continuum, in the months before death a person looks frail and sick but does not necessarily look like they are dying. In the weeks before death the person now looks like they are dying. (See Gone From My Sight for a description of all the signs of approaching death).
Dementia doesn’t play by these rules. Someone with dementia does not follow the process of a gradual death; they do not show us the signs that death is approaching. Someone with dementia can withdraw from this world’s activities for years, by being not interested, non-interactive, uncomprehending, unfocused. Someone with dementia can begin sleeping more, or even sleep all the time, and not have entered the dying process. Again, they don’t play by the rules.
Their food intake can decrease but it isn’t until they begin forgetting how to swallow or have difficulty swallowing without choking that dying actually begins. If we don’t eat we can’t live. If the decision not to use a feeding tube is made then the dying process starts. ALWAYS, ALWAYS offer food. You don’t just one day stop feeding someone. Generally, at this point the person is struggling against eating. We are the ones that are concerned. The person’s body has already begun to shut down and is probably disliking food. Offer, but don’t plead. Also beware of choking.
When the decision to not use a feeding tube has been made, depending upon the person’s weight and how much they are eating and drinking, death will probably come within weeks. Now you will see all the signs of approaching death that occur from other diseases and old age. Those signs will fit into the normal timeline that affects others as death approaches.
Something more... about Signs of Approaching Death with Dementia
I suggest my booklet How Do I Know You? Dementia At End Of Life to families with a loved one who is dying with dementia.
188 comments
Hi Paul, it does sound like she has moved closer in the dying process. Just a word about the holidays, remember we have limited control over the time that we die. This is just me but I think those that die on holidays or birthdays give an extra gift of “remember me”. They are including themselves in family traditions—forever.
If you have really strong feelings about her not dying during the holidays, tell her in a heart to heart talk. It is easier to talk with someone who doesn’t respond but know she will hear you. Know that whatever her choice it is her gift.
Blessings! Barbara
Hi Barbara,
We conversed back in early October. You told me the tell tail sign would be eating or lack there of. Well we have reached that point. No solids in the past week. Only a little ice cream here and there. Complains of hurting all over and doesn’t want touched or cleaned. We have moved on to the Fentanyl patch for the pain. Is sleeping 20 plus hours a day. Is also being treated for a UTI. Hospice tells me we are down to the final weeks not months. I am just hoping she makes it through the holidays. Thank you for all the support you give. Have a Happy Holiday.
Hi Athena, in response to your blog question, of do you wait to get into a Palliative Care hospital or return to the LTC? It sounds like if you are going onto a waiting list you have no alternative but to return to the LTC until a bed becomes available in the PC hospital. It is so hard to predict anything with dementia. It just doesn’t play by the rules. Food is your determining factor. I think you are right to not go the feeding tube route. At 91, your mum’s body is tired and wearing out. It is trying to let go, although ever so slowly. Your doctor, in saying your mum probably has weeks to months, is estimating as well as anyone can. My blessings are with you during this challenging time. Barbara
Hi, My mum is 91 and has struggled with Dementia and Primary Progressive Aphasia for about 7-8 years. She’s been in Long Term Care home for the past 4 years and now has complete Aphasia and is unable to speak.
n the last few months she lost considerable weight (she’s probably about 100 lbs now). She survived Pneumonia in August but now has progressively decreased ability to swallow.
In the last couple of months she became very frail and developed bedsores. Her main bedsore on her Sacrum has now progressed to Stage 4, became infected and she developed a fever. We took her to hospital. She’s now declared as Palliative and is barely eating – more because she can’t swallow, than lack of trying to eat. We don’t think a feeding tube or prolonging life is a positive option as this point. They said she has weeks to months to live. We have to decide where and how best to manage her end of life care with comfort and dignity. Would she be better served if we moved her to a palliative care hospital rather than going back to her understaffed LTC home? Or does is sound like she doesn’t have that long to wait for one?
Hi Carla, yes, it does seem your grandmother has entered the dying process. Don’t force her to eat or drink. Offer but it is okay if she refuses. Her body is trying to let go and it is food that holds us here. Love her, be there with her even if she doesn’t seem to know you are there. Words don’t matter now, just presence.
My blessings are with you and your grandmother. Barbara
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