Hospice for Alzheimer's Patient

Athanasia

My mom is a resident at an assisted living memory care community.  She is 84 years old and has had memory issues for 4.5 years.  She has been living in assisted living for 2 years and is declining rapidly.  She is in a wheelchair all the time and is a 2-person assist for everything.  The problem is that the 2-person assist is becoming too difficult for the staff, and they need to start using a HOYER lift to transfer her.  We are told that for assisted living to be able to use a HOYER lift in ILLINOIS, my mom MUST be on Hospice.  If my mom was in a nursing home, they could use a HOYER and she would NOT need to be on Hospice.  We are now exploring Hospice. 

I really don’t want her on Hospice if it will limit the time she has left.  I am trying to understand the disadvantages of Hospice.  I do understand that when someone is on Hospice, they are NOT allowed to receive treatments to cure their terminal illness.  My mom has Alzheimer’s and isn’t receiving any treatments to cure her illness.  She takes Seroquel and a pill for anxiety but nothing to really cure Alzheimer’s.  She also takes over-the-counter Prevagen, but I don’t think it’s working at this point.  All her other medications are for other things like blood pressure, thyroid, vitamins, and a stool softener.  So, I don’t see how “not receiving treatments for her terminal illness” would matter, since she isn’t receiving any treatments for Alzheimer's.  Can anyone tell me if this makes sense?   Am I missing something?

Also, my understanding is that if my mom has a problem NOT related to Alzheimer's, she can go to the ER to be treated.  If she is admitted to the hospital, she will come off Hospice during her hospital stay, and then back on it after she’s discharged from the hospital.  Examples of this could include falling and breaking her arm, having a stoke, or other problem NOT related to Alzheimer's.  Does this make sense?

Can anyone tell me if what I am saying is correct?  In our situation, do you think Hospice would be limiting the time my mom has left? 

Thank you for your input.  This is a very difficult decision.

M1

Welcome to the forum. Hospice and end of life care seem to be the topic of the day. Several threads are discussing this currently. Just so you know, I'm a physician.

This may sound blunt, but hospice is not limiting the time your mom has left. Her age and her diseases are. She is close to the end of her life, and she has at least one disease- her dementia- that will certainly kill her eventually. Death is not the enemy here; suffering and pain are. Death is a natural ultimate consequence for all of us, and the point of hospice is to accept the reality that she is close to death and to make her time remaining as comfortable and as peaceful as possible both for her and her family.

She can't move, she can't walk, she has dementia. I would accept hospice care so that she can stay where she is and pass peacefully, without having to move to a different facility. You don't look for other issues; the only relevant question is whether she is comfortable or in distress. There are many times we can't cure, but we can always comfort. There are many times we should not try to postpone death, but welcome it as a release from suffering. I pray daily that my dear partner, in MC now for two years and miserable, will die in her sleep.

Look at the thread immediately following this one, and there are two on the spouses/partner page with similar discussions today- one on "hospitalizations and treatment of every symptom" and another from Diane regarding amputation.

Athanasia

https://alzconnected.org/discussion/comment/205754#Comment_205754

Thank you.

BassetHoundAnn

My mom has been on hospice for two years. I think it has helped her tremendously, both physically and in enjoying her life. Hospice sends someone several times a week to socialize and hang out with her, which she loves. They send a nurse to check on her each week. They send an aid out to bath her once a week. My mom seems to enjoy these encounters.

Medicare, via hospice, pays for all her skin care products, her incontinence products, and even her medication. Nearly everything is covered 100 percent.

She has fallen several times and hurt herself, requiring stitches. Hospice nurses have been with her in the ER, making sure she has adequate treatment.

I have nothing except praise for hospice. The nurses and care workers have been wonderful, and the extra help has been a godsend. Both for me and her assisted living facility. And of course she loves all the extra attention, and the hospice aids and nurses.

Being on hospice is different for people with Alzheimer's/dementia than it is for people with other terminal illnesses. I strongly recommend that you check it out and get her on hospice as soon as you can.

Lynn24

I agree. My mother has been in Hospice comfort care services for a couple months and it is comforting to gain feedback from someone who has experienced these services for two years. Hospice has been a Godsend indeed for our family as well. I have been sharing this amazing news with everyone in my community that needs these services.

starwood

I just found this thread after recently posting in another location. I’m curious about how someone with Alzheimer’s qualifies for hospice care. I understand the 6 month survival timeline, but I’ve read that other conditions, besides dementia, must exist. My 82 year old husband was diagnosed in April, 2023, as being at the “moderate” stage. However, he has had a rapid decline in the last 3-4 months. About 2 months ago, he was almost totally unresponsive and had lost 15 pounds in about 3 months. After some medication changes, his cognition and responsiveness improved somewhat, but he has become increasingly frail physically. He is now totally dependent in all self-care areas and dependent on a wheelchair for mobility. Despite medication to stimulate appetite, it is a struggle to maintain his current weight. Cognitively, he is beginning to have confusion about where he is. He’s receiving home health care and they have recommended inpatient rehab hospitalization to see if he can regain any strength/mobility. So, my question is: is he at a stage where hospice could even be discussed?

M1

Yes Starwood, i answered on the other thread too. You do not need a doctors order for a hospice evaluation, you can call yourself. Sounds completely appropriate and there is nothing to lose by calling.

starwood

https://alzconnected.org/discussion/comment/218714#Comment_218714

Thanks for responding. Good to know you don’t have to have referral/order for evaluation!