What Comes Next? Dementia at End of Life

Dear Barbara, I live with my 79 year old mom who I believe has exhibited signs of dementia for years. She has recently started to sleep in until 11:00 a.m. or later and when she sleeps her muscles twitch and jerk. She talks to the TV as if it’s a person. She believes all of her blankets are children or animals. My mom also suffers with sight issues and to my knowledge does not see much of anything. She can speak but sometimes it’s in her own language and/or to someone that only she sees. She cannot carry on a normal conversation and babbles. Her appetite is okay but she would not eat or drink if not offered. I take my mom to the neurologist and her personal physician on a regular basis. My question is, what is to come and when should I call hospice?

Such a difficult question to answer, “What is to come?” Dementia does not play by the dying process rules. There is no time frame we can put on dementia’s progression. My guess is your mother’s life will probably continue to deteriorate and become even more non functioning. She may progress to being completely bedridden and maybe even non-responsive. How long for all of this to happen? I have no idea.

Dementia is like a road map with many, many roads that eventually lead into a city. Each road is different, each road is of varying lengths and offers various views but all enter into the city at the same place. That place for my dementia analogy is when a person stops eating.

It isn’t until a person is not eating enough to keep their body alive that actual approaching death signs begin and we can put a guesstimate on how long a person has to live. As long as she eats when you feed her she can probably be getting enough calories to maintain her body.

When to call hospice? I would call hospices for a consult now. Start your hospice “shopping” NOW. Interview, ask questions (see my blog on questions to ask) and then selectively make your choice. Some hospices take people with dementia earlier than others, that is why you interview several now.

Hospice Medicare regulations require a patient’s decline be evaluated after 90 days, then another 90 days, and then every 60 days. As long as there is continued decline, hospice services can continue. If, because of those evaluations, the hospice staff determines the patient has plateaued then hospice services are terminated. The patient will be removed from the hospice program.

Know that if a hospice takes your mom, and my thought is someone will, your mom could still be alive at the end of the third evaluation period. Then hospice will have to take her off the program (depending upon what signs of declining she exhibits). She can be brought back on the hospice program at a later date when she begins to show signs of further decline.

I know this sounds daunting but it is worth the effort to start your inquiries into hospice services now. There may be a hospice that will take her now. The support they will give you can be very helpful.

Something More about... What Comes Next? Dementia a End of Life

Are you caring for someone who has dementia? Whether you are a family member or a professional caregiver, you will be helped by my booklet, How Do I Know You? Dementia at the End of Life.

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Sherrie Franklin

OMG!!! I’m caregiver for my aunt. She’s 84. She’s been a fall risk for about a year. After the last fall, she fought therapy and is now bed ridden. In the past three months, (since her last fall), there’s been a rapid decline in her mental capacity. I can definitely relate to the story of the daughter taking care of her mom. The biggest difference is my aunts appetite isn’t as good. She stopped eating for a while, then it picked up for a couple of weeks, now it’s off again. It’s unbelievable to see the rapid changes! One great thing, she’s in Hospice care. They’re amazing and of great help! Because of Covid 19, her services were drastically cut. The nurse comes every other week and the weeks she doesn’t come, we have a virtual visit. But I’m truly grateful. Looking forward to reading your literature. Thank you. Your explanations are very helpful.

Claudia Hauri

Regarding the 79 yo father developing dementia…….Right on Barbara!
When my 100 yo mother started forgetting & becoming confused beginning 2013nmy brother & I enrolled her in hospice. She remained enrolled for 1.5 yrs. The last 6 months was called: Failure to Thrive as a Dx.
Today the limits might be more strict since quantity vs. quality might reign in a business model.
Hospice was a great help, for me, an RN/BSN since 1964, Family Nurse Practitioner ‘76, & an EdD (teacher nurse ’89) who couldn’t see the forest for the trees. The medications delivered, the added help ( we had 24/7 ) for ADLs, the RN visits, SW visits, Chaplain if needed. Mom finally gave up the challenge against .death 2 months shy of 101.
Start interviewing for a Hospice now. On a wind & a prayer my energy is with you, hugs & luv, C


My mother died of Alzheimer’s, but beforehand she had several years of what we thought was “dementia” … it was a living nightmare.
One moment she seemed with us – the next it was as if she had checked out – not knowing who she was or who we were.
For her to live such a full life, yet, in the end forgetting it ALL was beyond NOT FAIR!!! Yes, I know Life isn’t fair, but it’s been 7 years since her death and I still struggle to make sense of any of it.
My mother was a strong, proud woman who would have been mortified if she’d known some of the things she’d done in the last few years of her life after she had lost her mind.
Dementia and Alzheimer’s is the worst of diseases.
Thank You for letting me vent.


Hi Kathleen, to purchase my booklet How Do I Know You? you can go to our website bkbooks.com and click on shop, email us at bkbooks@bkbooks.com, or call us at 360-828-7132. It is $3.00 plus shipping and handling which is $2.00. Thanks for asking. Blessings! Barbara

Kathleen Starbuck

My husband is in the early stages of dementia. How and where can I get your book.
I’ve read all your other books, they are so helpful. Thank you!

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