My parents are a good example of the differences. Mom and dad both have severe dementia. Mom however is earhing and drinking little while dad eats well (and all of mom’s snacks). Research shows that those whose BMI is less than a certain amount or has lost a certain amount of weight over 6 months (I think hospice requires 10%) has an increased chance of death in the next 6 months. Therefore, with the same level of dementia, mom may qualify and dad will not.
Our experience has been that my mom’s AL recommended that we call in hospice for additional care. At that point we called various hospice agencies that came in to interview her to see if she qualified for their services. They spoke with her primary care physician to see what her hospice diagnosis would be. They told us that “failure to thrive” is no longer enough to qualify and instead used a diagnosis of COPD. I never even knew she had COPD. She is certainly in terrible shape and probably has a very short time to live.
My mother has been on hospice for 14 months. She’s in a nursing home, has severe dementia, can’t see & barely hears. What precipitated the nursing home making the referral to hospice were open sores she had that were not healing easily. Everyone, including me, thought she would die last winter when everytime one sore finally healed, she’d develop another one (they weren’t bed sores). But here she is a full year later. Hospice services for her are ~$4800/month, which Medicare pays for. I’m not sure that’s all been money well spent.
A doctors order initiates a hospice referral but they hospice is responsible for assessing that a patient has a life expectancy of less than six months. The Medicare regs for dementia are much more stringent because disease progression is less predictable.
ARGH, my mother has been weak and virtually bedbound for two weeks, hospice is supposed to intake her Monday, and yet last night and this morning she seems a bit better. Oh my, does that mean she won’t qualify? Do I call them and tell them never mind. All these thoughts running through my head.
Deep breaths @somemom I would go ahead with the hospice evaluation. You will never be able to time things perfectly. Just so you know, just got back home from mom’s hospice evaluation. She qualifies based on her rate of decline and extent of weight loss. She did speak more than 6 words to the hospice intake nurse. She is 89 pounds and went from needing assistance with dressing and bathing, to needing full care in a 6 week period of time.
@GTalum - I’m so sorry your mom is declining so quickly. Even if hospice will be helpful, it’s just such a sad situation all around.
@GTalum I’m sorry to hear this. I feel your pain. I think we’re at the end with my mom (but who knows). She is 85 pounds and doesn’t eat or drink. She has had hospice care for a couple of weeks at her AL along with private care. The hospice nurse told us today that he feels like she has an infection somewhere and would like to move her to a hospital or the hospice hospital. She doesn’t want to leave the AL so we all agreed to have 24 hour care come into the AL and provide her with medical care. I assume that means an antibiotic, but there will be no life extending measures.
Four months ago she was living alone and care for herself. The decline has been unbelievable.
Oh this stories are so difficult to read. I really feel for all of you considering hospice. My MIL was in a physical hospice facility for only 3 days before she died and I have to say it was a really good experience as those things go. It was a nice room, without all the machines of the hospital, and the staff just took good care of her, washing her hair, helping her dress etc. But she had pulmonary fibrosis and I suppose it was relatively easy to know when the end was near.
I think living with Alz and having a parent with Alz must be challenging in so many ways. And I wish there were better systems to support patients and caregivers. Without getting political, I wish there was as much support “for life” in these situations as there is at the other end of the timeline.
@ams5796 Certainly sounds like your mom’s decline is as rapid as mine. Hospice told me that any hospital admission would discharge her from their care. So difficult to see her so gaunt.
Practical question for everyone. My mom has a lot of elastic waist pants in different colors but they are falling off of her. I would love to get her some more in small or extra small but don’t want to spend a lot. Anyone have suggestions?
My relative had a nurse assistant that she paid for only one day before she died contentedly in her own bed in her own home. The nurse assistant called her brother and cousin, who were at her side. It is always tough to see our loved ones depart, especially when there is a sudden and great decline. 
@GTalum - have you tried Lands End? I found their pull-on pants worked well for our elders, standing up to institutional laundering. Some styles may run larger, check reviews. They have petite sizes and for my MIL, petite crops fit best. No need for any tripping over extra fabric.
Reading this thread is poignant; sending wishes for tenacity and strength as you walk these ambiguous walks with your seniors. While all acknowledge that ”getting old is not for sissies”, neither is being a caregiver.
@GTalum My mom has always been a fashionista. A couple of months ago when she first moved to the AL she wanted some Talbots extra small leggings and jackets to wear to the dining room. Apparently many of the senior ladies get pretty decked out for meals. Unfortunately, she stopped going down to meals (in a wheelchair) a couple of weeks ago. The new clothes really made her happy though.
If she goes to a hospital it will be a hospice hospital. I’m learning as we go. Apparently we’ll have to decide if her infection should be treated with an antibiotic or if we should just keep her comfortable now.
Wow @ams5796 , COPD, 8ge 85, not eating/drinking and a possible infection. Hopefully they can figure where the possible infection is - and if not eating/drinking will improve if ABT takes place, or not. How is her level of consciousness and orientation?
Sounds like it will all happen in a compressed time frame. Good luck with the support of all your local resources.
Oh my; MIL bullied/guilt-ed her local area son to allow her to COME HOME from the hospital. FIL has been moved to skilled care. TV is coming to FIL via other geographically close son.
H is flying to our home (N AL) today from work in CA.
MIL is going to be mad/mean anyway IMHO. Bad mistake letting her come home.
MIL is making things very difficult.
Thank you @SOSConcern. It does look like it will happen very soon. I just came from a big meeting in my mother’s AL room with many of the members of the hospice team as well as members of the local VA hospice (she is a veteran). Apparently we are going to move her to the VA hospice when a bed opens up. (there’s a flu outbreak there). She will get round the clock wound care done correctly with no cost to her/us. Currently, we’re paying for round the clock private care and the AL. Hospice comes in too but not enough. At the end I asked the VA nurse how long until the move happens. She said “possibly next week if she lasts that long.” Wow. She’s starting to hallucinate (very end of life) They’re not planning to treat any possible infection, but to just make her comfortable.
My husband keeps telling me how sad I’ll be because we’ve been close. It’s hard to think that way because right now I know that none of us can go through this for much longer. My brother and I are meeting with the funeral home next week. I think I need relief and closure. I’m sure I’ll be sad.
Hugs @ams5796
All good thoughts, @ams5796. I understand both the grief and the relief at the thought that the struggle will soon be over. At a certain point, it seems unfair to ask our loved ones for more. My father died at 93 after a protracted downhill slide, while my mother had a shorter term illness, with a brief and tranquil fade out at 80. While many things impact how one grieves, I found that the longer term fundamental absence of quality of life my father experienced was a powerful counterbalance to the sense of loss. I was grateful he was no longer suffering, even though he retained his cheerful demeanor to the end and his memory loss prevented incapacities and pain from accumulating for him. It is good that you have a caring team and a way forward. My best to you and your family.
@travelnut Thank you for the good thoughts. You have been down the same road so you know how hard it is. I feel like I lost her a while ago. We haven’t had a conversation in a very long time. It has been so painful to watch this decline. I think we’re all ready. We’ll see.
@ams5796 I’m sending thoughts of peace and comfort. I know what you mean about just wanting it over because this can’t - for anyone’s sake - go on much longer. We love them but it’s excruciating all around for them to be in that state.
For what it’s worth, my father passed less than 24 hours after the hallucinations started. May your mother’s passing be gentle and peaceful.