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.
186 comments
Hi Joan, in response to your letter, you have done nothing wrong with your mom. She is not mad at you nor did you do anything to bring about this change in her behavior. Here are two things that could be contributing to this change. Breast cancer can metastasize to the brain so this personality change can be the result of the cancer. The other possibility is the dementia. Dementia doesn’t play by any rules and it could be the cause of this shift. The bottom line from what you have described is your mother is ready to leave this earth and join your father. She is saying clearly her work is done. Love her, spend time with her, listen to her if she wants to talk but know it isn’t words that are important now. It is your presense and your love and support. You might find my booklets in our End Of Life Guideline series helpful.
Blessings to you and your mom. Barbara
Hello,
My is metastatic breast cancer along with dementia. She is 83. My father past away 5 years ago. My struggle in trying to understand- she was fine this year. She would go outside in the back yard and sit at the patio. We would walk around the cemetery. Then, in August; a complete 180. She doesn’t want to walk anymore. No more going outside. Her food intake stopped. Did I do something wrong? All she talks about is going to be with my dad. Hence, she’s being saying this for 5 years. But now, she looks at me. Doesn’t say anything. And tells me she is ready to go to my dad. I really feel that I have done something wrong. Why all of. Sudden a quick decline?
Hi Lydia, what stamina your mom has! She sounds like quite a lady. I hate to see her lose what freedom she has by going into the Memory Care unit. Also change of any kind tends to cause an increase in dementia progression. I think as long as she is safe, doesn’t wander, won’t leave the building and the staff is comfortable with her having free range I’d hold off on the Memory Care as long as possible. Just remember reasoning with her about her parents being dead gets you nowhere. Maybe tell her they are out of town so she can’t see them right now and see what happens. She probably won’t remember that either but it keeps her from having to repeat her feeling, even the momentary sadness, of their being dead. Also talk to Reception and have them tell her mom is out of town. It is a small thing they can do. With dementia people don’t live in our reality. Our goal is to make their reality as loving and comfortable as possible. If that means bending the truth, so be it. If I can help, use my personal email Barbara@Bkbooks.com.
Blessings to you and your mom. Barbara
My mother, 92.5, lived autonomously, managing her home until 89. She chose to go to assisted living, not wanting to drive. She did pretty well, spots of poor memory with names and money matters. Before she moved I took over her bill paying after having cable turned off twice for non payment. Nov. 2029 – after being isolated for 6 months because of covid, she got a uti, and was hospitalized, when she was released, she was in a wheel chair, had a catheter, and was memory and logic gone.
Within weeks she went from chair to walker to walking without a cane. She is still unable to recall things, and repeats. Over the past two months she wants to talk to her parents- dead 55 and 46 years, and weeps like she has never heard. I tell her the reality because she will go downstairs and ask reception where her mom is.
She is social, loves to chat, watch movies go to chapel, and take care of her kitty. She finds her way to the cafeteria at appropriate times, and is not belligerent with staff or residents. If she would go to memory care in the same facility, she would loose that.
I’m feeling so lost and uncertain. Any suggestions.
Hi Sarah, about your aunt’s condition deteriorating so rapidly— has she been seen by a doctor? If not she should be. Something must be happening to cause this decline, and not just a UTI. Get some lab work done, you talk with her physician directly, be her advocate, NOW. Blessings! Barbara
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