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 inquires 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
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