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
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
Hello
My dear Aunt is 72, and what I’m finding hard to come to terms with, is that when I saw my aunt 2 weeks ago at her care home, she was completely mobile, talking, she knows me, we chatted about fashion, and what we were finally going to do now she will be able to come out of the care home for days out now lockdown rules have changed, in the space of 2 weeks she has gone dramatically down hill, first it was suspected UTI, but very quickly she couldn’t walk, and now she is not speaking, eating or drinking, it’s like she has skipped through middle to last stages within 2 weeks, I just wasn’t expecting her to deteriorate so rapidly in just 2 weeks, I just can’t understand it,
Please I need your advice
Many thanks
Hi Alex, understanding why dementia does what it does is challenging and it generally outplays us every time. Dementia just doesn’t play by any rules. Most diseases have a pattern. You generally know what to expect. With dementia there seems to be no pattern, at least as far as approaching death is concerned. Your mother’s roommate could have been having an affect on your mom’s behavior and decline. Thoughts are things, the energy of others affects us. Also her disease will progress and that could be what is occurring more rapidly now. Bottomline: nobody really knows. What you DO know is the dementia will progress. Your mom will reach a point of total withdrawal and not eating. Watch the eating and not eating that is your guide. Your job: love her, visit even if she doesn’t seem to know you, talk to her even if she doesn’t seem to understand. Use the time you have to bring some sunshine into her life in the manner that she can receive it.Blessings to you both. Barbara
Hello. My mom was diagnosed with frontotemporal dementia back in 2016. Ever since May of 2017, she has been in an assisted living facility. Within the past month, she has taken a sudden decline. She didn’t want to get out of bed, lost her appetite and stopped saying much. While this was happening, her roommate she had lived with since 2018, was in hospice with dementia. One week my Mom’s doctor she might need hospice because she wasn’t eating and had lost weight, but they were going to try and decrease some of her medicines to see if that helped. A week later I got a call my mom seemed to be doing better and eating so she was fine. A week after that, I got another call she wasn’t eating or drinking again and that the doctor would need to come out and look at her again, this time most likely calling in hospice.
Last Tuesday, my mom ended up having to go to the hospital due to some of her vitals being off and she had a UTI which she was treated for as well as a CT scan to check to make sure there wasn’t something else causing the sudden decline. My mom’s doctor came back out on Thursday and noticed no change in her and put in the orders for hospice. they came out last Friday to evaluate her and she was admitted into the program.
On Friday evening, her roommate passed away while my mom was in the room. Since then, she seems to be eating some of her food and talking a little more, but still won’t get out of bed and has some sores from lying in bed. She also can’t do anything on her own as far as toileting and such.
I spoke with her hospice nurse today and she said my mom seemed to be doing better and said because it was still new that they would monitor.
Since she has been up and down bad the past month, I just don’t know if it was just her roommate being sick that caused her decline or if my mom herself is just having a rallying moment. Any advice?
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