How to know when Hospice should get involved

TrishaG

My LO (mom) who is only 69 yo was diagnosed a year and a half ago with Mixed Dementi. She has vascular dementia and Alzheimer’s.  Our original concern was that mom had lost significant weight and was spitting food out on the floor or in a napkin. She went from 132 to 91 pounds. She was screened for cancer and that was negative. She has COPD, CAD, and aortic aneurysm. She has been stable, however we have seen a significant decline in her walking ability. She has a very unsteady gait and I have been trying to get the doctors to do something about it. My mom currently lives alone, and I check on her frequently. I want to put her on palliative care, because she only wants comfort measures. She does not want any medical intervention and is a DNR. My question is what signs did you see in your LO when they were declining and entering the last 6 months to year of life?  How can I convince medical personnel that we want this level or support?  She does not want to even go out of the house anymore and very withdrawn. I am sorry as I am rambling, just really need advice.

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harshedbuzz

Trisha-

Hello and welcome. I am sorry for your reason to be here, but glad you found this group.

Given what you have written here, early onset Alzheimer's plus the pulmonary and vascular issues, you should contact hospice now. Early onset (before age 70) Alzheimer's can progress more rapidly than when diagnosed later in life. The weight loss is especially concerning. We were told a weight loss of <5% in 6 months was ominous.

You don't have to convince her medical team, you can reach out and have her evaluated without their input assuming you are her legal representative (POA, guardian). Hospice teams will decide on whether she qualifies. The "6 months to live" requirement is a bit looser in Alzheimer's.

If she does qualify, the family would get some DME (bed, commode, wheelchair) to make her care easier, twice weekly bath attendants, a visiting nurse weekly, chaplain. 

That said, it doesn't sound as if you mom should be living alone. The weight loss and being left alone with poor mobility could be interpreted as neglect if APS became involved for some reason. Gait is often impacted in the later stages of dementia as the brain deteriorates; it's unlikely PT would be successful at this point. Even if she does qualify for hospice, it does sound like she needs 24/7 care. 

HB

TrishaG

Thank you for your advice.  We did just have mom's memory testing follow-up 2 weeks ago, and the Neuropsych stated that she is still in ES.  I am not sure how that can be, due to the physical issues that we notice. My mom does not want to eat, and if we try to encourage, she will eat some soup (broth).  Everything I read is that if your LO does not want to eat, you should not push that, as maybe their body isn't needing the food.  That is what makes me think that she may be in the dying stages.  My mom is a very special and stubborn person.  But it does help that others feel that home health may not be the correct path.  Maybe I know this deep down, and don't want to accept that.  Since my mom has always told us that she would rather die than be put in a Nursing Home.

mommyandme (m&m)

I think you should call in hospice now even if she lives more than a year.  They’ll evaluate and probably admit her.  They can be a great support for all of you.  Her weight loss and not desiring food may very well be a transition towards end of life.   Please get them in for an assessment and probably onboard as soon as possible.  I think home care help would also be a plus.  That’s how we cared for my mom.  

Sorry for these worries and this reality for you and yours.  

Mlewis501

The first time I called and hospice came out and did an evaluation, we were denied.  My mom too was losing weight.  I called another hospice company and talked with them.  They came out and immediately qualified her.  Don't give up... keep trying!  My mom lived a little over a year on hospice.  It was nice having an extra set of eyes and helping hands with hospice.  I found that not all hospice companies are the same, so find one that you are comfortable with and will listen to you.

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BassetHoundAnn

I would definitely call hospice right away. My mom has been on hospice for over a year. She has both Alzheimer's and vascular dementia. She goes through phases where she won't eat, she'll lose a lot of weight, she seems to be fading away, then suddenly she'll start eating again and with gusto. And she'll snap out of her funk and grow lucid and talkative. A couple months ago we thought she was dying. And now she's back in the saddle again. It's all very cyclical. 

Hospice has been a huge help through all of this. Both physically for my mom, but also emotionally for me. I can't say enough good things about them...they've been great. With help, with advice, in every way possible. So do give them a call. The first time my mom applied for  hospice she was denied, but a few weeks later she was accepted. I was told by my mom's care facility that they have residents that applied for hospice a half-dozen times before they were finally accepted. 

towhee

You wondered how the doctor could still say your mom was in the early stages. So, a couple of things. People with dementia can "showtime", that is, they can pull it together for a short period of time and do well while they are in a doctor's office, even doing ok on tests. The doctor does not know how she does at home. The same thing can happen when you are visiting her. If you really want to know her current level of ability you need to spend several days with her. This website will give you several ways to determine dementia stages. Caregivers usually use a 7 step model while most doctors will use the 3 step model. www.dementiacarecentral.com/aboutdementia/facts/stages/#care

The other thing is that her gait may have nothing to do with dementia. It could be related to medication, low blood pressure, etc. 

I agree with everyone that you should reach out to palliative care/hospice. They will be able to evaluate her in her home setting. Palliative care and hospice are different. If palliative care is available in your area try that first, if hospice is appropriate, they will tell you. Both palliative care and hospice are about quality of life over quantity, but their focus is different. Anyone living with a severe chronic disease is likely to qualify for palliative care.

I also agree that the not eating part of this disease can be cyclical. One of my relatives went thru the eating not eating phase for more than two years, another was nine months. One passed from a stroke, the other from pneumonia. I also agree that your mothers living situation may put you and your family at risk of being investigated for neglect. If she falls and ends up in the ER or passes away at home without hospice on board adult protective services may be called. There is a difference between not wanting to eat, not being able to prepare food or being offered food that one is inclined to eat, or can physically eat, or not being offered food in a setting that encourages eating. 

If I have misunderstood I apologize. The information that can be given in a short post can be inadequate and occasionally misleading.

Beauchene105

Hi, just agreeing that she is likely to qualify for palliative care. Definitely request that. Also remember that no one on the planet "wants" to go to a care home. Sometimes in life, though, we have to "be the parent" when they are no longer capable. Making caring choices to help a LO isn't the same as ignoring their wishes. "Wishes" don't always fit the situation. Hang in there and remember that lots of us are "hanging", too!

TrishaG

Thank you for your help. I spent this last weekend with my mom 24/7 and noticed even further issues. I am also reading a caregiving book and have decided it is time to move mom into assisted living. We have an appointment later this week for her to tour. I also have palliative care also involved to help.

CarolForAnn

My mom has Alzheimer’s and stage IV neuroendocrine cancer. She is in a memory care facility now- she was at my house until I couldn’t take care of her. She has been on for a week. Hospice and the memory care facility seem to do a really good job taking care of her.  I think she is close to end of life- today she couldn’t feed herself. She can’t talk- doesn’t seem to understand directions or anything for that matter. She can’t walk or even stand. She is so skinny that all her bones are sticking out. I see her daily but recently feel like I’m going to have a nervous breakdown. I feel like I can’t go back to memory care center but there is no way I would leave her alone to deal with this by herself. I am so sad and miss my mom so much/ even though she is right in front of me. Wondering if anyone has a ‘positive’way to look at this situation?

CanyonGal

My mom has vascular dementia and has an abdominal aortic aneurysm (2 surgeries - stent failed on the first). She had some type of delusion where she said she wasn't allowed to eat whatever food was placed in front of her. No one ever figured it out - doctors, hospice, or psychiatrists. She dropped down to 85lbs (rapidly lost 25 lbs. in a couple of months) and hospice accepted her on the dementia and rapid weight loss.  Once put in memory care, she did suddenly begin to start eating, and gained a bit of weight back, but she is still skin and bones.

My main concern on someone living alone and has these issues is the possibility of a fall. Hospice would place more eyes on her.