Signs of Approaching Death with Dementia

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. 

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187 comments

Emma Theriault

My mum was diagnosed with frontotemporal dementia 5 years ago, shortly after my dad passed away suddenly. She declined very quickly and has been in memory care for the past 2 years. She is in a wheelchair (after breaking her hip and being unable to learn to walk again once it healed) and is increasingly frail. She is on a soft diet (spoon-fed). She has been unable to communicate clearly for some time now, although she still chats away in what is increasingly gibberish. While I am told she still has a good appetite, I have noticed in the last couple of months that she is sleeping much more (it is hard for me to catch her awake during visits and if I do, she invariably drifts off after a few minutes of ‘conversation), and her voice is getting softer when she talks. It is harder to catch her eye, although occasionally she will lock on and smile. I try asking the nurses at the home how she’s REALLY doing, but they just say “she’s doing great!” I read your booklet about dying with dementia and, honestly, I am feeling a little desperate thinking that my mum could go on in this state for much longer. It is hard to get my head around the possibility that the changes I am seeing in her aren’t signs of dying. I am grateful for the time I still have with her, but if I had my way, I would set her free. To my knowledge, she has no acute health issues beyond dementia, although she does grimace in her sleep sometimes, which makes me wonder if she is in pain. I have read elsewhere that most people with dementia die from an underlying condition and not from dementia itself, but I wonder how far the brain can decline without leading to death.
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BK Books replied:
Oh Emma,It is so hard to determine what is disease progression and what is approaching death when dementia is the key diagnosis. Dementia just doesn’t play by any of the usual dying “rules”. Food and not eating are your only clues. It is when she is consistently not eating enough calories to sustain her body that dying actually begins. Blessings to you and your mother! Barbara

Kathy

My Mom has had cancer for 2 years now and just recently I had to put her in a nursing facility. She did live at home until recently when she had to have more help than I could offer her. It is very hard to see a loved one or friend slowly waste away, and that is what cancer does, and it is very painful, despite taking many pain management drugs. I am exhausted from taking care of her, only those who have cared for a cancer patient understands, it is a whole other physical problem. She is 86 and has lived a wonderful life and I pray at times for God to just take her on home with Him, but, I know it is in His timing. It is just so hard to see your loved one get weaker and weaker because of the cancer and you can’t do anything but just be with them for as long as they have.
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BK Books replied:
Kathy, Yes it is devastating to watch a loved one decline. Whether it is from cancer, dementia or any debilitating, life threatening disease it is hard (hard for the person and hard for the caregiver). My blessings are with you and your family. Barbara

Sally

92 Yr old Father is in memory care. Before he left my home, he was not sleeping, talking to people in the closet and thought he was back in the Korean War.
After trying to barricade himself in his room, we found a wonderful memory care and visit regularly. In the last two weeks, he contracted Covid. He went a week before any treatment plan was issued. They gave him a “Z-pack” for his growing cough. He only took it for the 4-5 days because of the medication strength, however, I understand it was to stop any developements not the Covid. He still tested positive on second testing of Covid but is now now wanting to eat. Is taking “Boost” supplements instead of meals. This has gone on for over a week. Supposedly the doctor there is now ordering lab work for possible UTI – I haven’t been able to see him due to his positive testing but am getting very concerned about his lack of eating and “we’ll get to him” illness. Any advice?
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BK Books replied:
HI Sally, I would show up at the facility and speak to the Director of Nurses (go to the top) and express your concerns. set up a protocol with him/her as to how care will be addressed and in a timely manner. I am glad they are giving him a liquid supplement,. They may need someone to feed him and encourage him to eat. At 92 I am concerned about him getting covid. In that age group it sometimes just takes one health issue to start a domino affect of deteriorating health issues. Blessings to you and your dad. Barbara

Marlene

My husband is 83 has dementia he also has a fib and shortness of breath. He he is very big man and he is falling. I had to call 911 to lift him when he fell backwards into a tub, fell into the shower doors also.
I’m at my wits ends what to do, it’s getting harder and harder for me to take care of him! Please advise me my options! When I mention nursing home to him he gets very agited and he won’t go
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BK Books replied:
Hi Marlene, of course your husband gets upset when you mention nursing home. No one wants to go to a nursing home BUT that doesn’t mean he might not have to be in one if you can’t take care of him. You might start with talking with his physician and asking his/her advice. You can also talk with the hospital discharge planner and/or social worker. I would start exploring nursing homes, prices, locations now so when the time comes you will have ideas. Blessings! Barbara

Denise

My mother is 76 years old. She was diagnosed with Dementia almost three years ago. My Father just passed away 3 weeks ago, and they were married 58 years. Since his death I have know a tremendous change. She is getting more agitated and more aggressive with her words. She has stop bathing and gets a little aggressive when trying to bath her. I have also noticed that she talks of the past more often, and she has conversations with people who are no longer living. She has stopped eating breakfast but eats only lunch and may have snacks afterwards. I am confused on which stage she is in because she refuses to go to the doctor or conversation with people over the phone. What should I do?
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BK Books replied:
Hi Denise, Everything you described could be signs of approaching death, or signs of grief for her husband, or signs of progressing dementia. Dementia doesn’t follow the same rules of approaching death that other end of life diseases follow so it is almost impossible to figure out why changes occur and what they mean. What can you do? What you have been doing. Offer her food, if she refuses that’s okay. don’t force. Distract her when she is angry and agitated. Don’t take her behavior personally. Try to be in the present with her, try to have good moments (sometimes you will be successful, sometimes not) and take care of yourself. If she becomes too agitated you may want to contact her doctor yourself and explain her behavior. He may have a prescription for her aggressive behavior. This is a challenging time for both of you. Blessings! Barbara

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