Hospice?(4)

TK67

I took my 77 year old mother, who is in late stage Alzheimer's, today and the neurologist said she could give us a hospice referral.  This is not because my mother is dying within two weeks (what you think hospice is for) but because she has fallen down twice, starting to choke when eating or drinking, and needs 24/7 supervision.    I experienced having hospice in my house for my father who just passed away from cancer.  Have you experienced hospice coming to help your LO w/Alzeimers and what stage was your LO in when hospice started coming.  Any advice would be appreciated!

Thanks!

manuzito

Tk67, my DH had dementia and one morning he woke up hallucinating. I phoned his doctor and he prescribed a medicine to which my husband had a terrible reaction.  I phoned the doctor again and he told me that it was time to place my husband in hospice care at home.  After the assessment from the hospice agency they scheduled a nurse visit 3 times a week and also an aide to shower him every other day.  His condition improved and he was released from hospice service after three months.  When he started having problems with his mobility he was approved for hospice again.  He was on and off from in home hospice service for almost a year. Hospice service doesn’t always mean that the patient is dying.  It’s advisable to interview several agencies before taking the service.  I had bad experience with one agency and was able to make a change without any problems.  After my husband had a mini stroke his health deteriorated rapidly and hospice service was excellent all the way to his parting.

I was wrong thinking that hospice service meant ‘near death’.  

Jane Smith

Hi and I’m happy to share my experience about hospice. 

Thankfully well before my mom needed hospice, I had attended a couple of Alzheimer’s Association programs where I learned (from a hospice nurse no less) some info about using hospice services for persons with dementia. I had not known that:

Hospice can be started when the patient is not actively dying

Hospice provides support for patients and families 

You can shop around for hospice companies and change if they don’t meet your needs

A patient, especially a dementia patient, may go on and off hospice services

A patient, especially a dementia patient, may be on hospice for a long time (years)

Hospice may help pay for supplies, medications, and equipment 

Hospice will come to a patient at home or in a facility 

Hospice provides an extra layer of care/another set of eyes on the patient 

Most patients and families would benefit from starting hospice support sooner rather than later 

My mom, in a facility and late stage dementia, has been on hospice for 8-9 months and I’ve found all of the above to be true. 

They come to her facility. She has an assigned hospice nurse and I get regular updates from the hospice nurse.  They pay for some of her medications, all of her equipment (hospital bed, wheelchair), and some of her supplies (incontinence supplies).  I am getting a LOT of support from hospice.  And if it were not restricted by Covid, my mother would be also:  visits from the chaplain, music therapist, and so on.  

I am glad I signed her up and would not hesitate to do it again. I can’t see any reason NOT to use hospice. 

Do make sure you understand what they will and will not do. This can vary by company. You can interview/talk to as many as you want. 

Best wishes to you. 

Rescue mom

Jane Smith thread was very good. My mom with mid-and late stage dementia, had Hospice on and off for about 4 years. (She was also in a facility). A couple times, she “improved” so much, Hospice dropped her. Then she’d decline, and they’d take her back. Death was not imminent, but she was in her 90s, demented, and frail. 

Hospice help was fabulous, a nurse visited regularly and doctor called in if or when needed. The more eyes, the better IMO. They provided equipment and supplies (mostly incontinence supplies, but also some toiletries), all at no cost to us. Also some volunteer visitors just for socializing, although those are very few and in high demand. And now with COVID, such visits are restricted anyway. Counselors were available for family; they also helped with making sure all legal papers and arrangements were done.

Probably more, I thought they were invaluable.

windyshores

My 93 year old mother was on hospice for 3 months for dementia, though she also had some medical issues going on. She was not near death, as far as we could tell. She improved and went off hospice after those months.  I am thinking of getting her back on since she is recovering from COVID and very weak.  The daily aide was especially helpful.

One thing to be aware of:  a patient on hospice is on Hospice Medicare, not regular Medicare, and the insurance only covers palliative measures. My mother fell and had a huge hematoma on her forehead. She needed a small procedure to let the blood out. We argued that this was a comfort measure but went off hospice that day, then back on.

They provide morphine and various meds for end of life in a kit that we didn't use. They gave her morphine once and I asked them not to, since it was a fall risk and she didn't need anything that strong for her colon issues at the time.  In fact, morphine contributed to the pain because it slows the system down.

Although we really appreciated the help, some of these situations made it increasingly clear that hospice was not a good fit, and they were a little pushy. We switched to a different agency one level down to "palliative care," which retained regular Medicare but included a nurse visit/week.

Cynbar

TK, go ahead and agree to that hospice referral. If the doctor suggested it, she probably has an agency in mind --- start with that one, remembering it is not your only option. There seems to be some gray area in the qualifying criteria, so sometimes one agency may say no when another will say yes. Dementia patients are supposed to be at least a 7A on the FAST score (meaning basically no language in addition to other qualifiers), but some posters have reported their relatives were accepted who weren't there yet. Plus, sometimes hospice can use another diagnosis (like congestive heart failure, for instance) that may apply, or the presence of several co-morbidities can tip the scale. Even if the first one accepts you, it's a good idea to at least talk to another agency and compare what they will provide. Some provide incontinence supplies, but not all of them do. Anyway, if you are accepted, your chosen hospice will indeed offer you a lot of support and hands-on help. And keep in mind that you are not locked in ---- you can sign off if it's not working for you, or you decide to pursue some treatment that is not covered because it is curative. I can't see that you lose anything by starting the process.

zauberflote

TK, I agree with Cynbar. Take up the offer; you can quit at any time. 

Mom was on hospice for 8 months. She was mobile, eating independently, had conversational skills, and was very frail but with no serious co-morbidities. She was in MC, and I called the same hospice that had helped the family for 18 months with MIL. I developed a close and friendly working relationship with my RN. I pestered the on-call staff a few times, and they talked me off some ledges, very compassionately. Mom broke her hip shortly after being accepted, and hospice helped us out tremendously with our choices there. She was off for 6 nights in the hospital for replacement surgery, but the second her gurney wheeled into her facility she was back on again, and we got the under-the-table bonus of our nurse watching the incisikn AND taking the staples out. 

Mom died quite suddenly last February, and while her death was not a surprise, she had no active dying period, so we were all surprised when she died between half-hourly bed checks one noon-time. Our nurse was already on her way to do her regular twice-weekly rounds at the facility, so I didn't even have to wait for her. She gently and lovingly  helped me to wash Mom. It was good so. 

Abuela

My mom was on Hospice for 8 months.  The way that dementia hospice works is that the disease has no cure. They will die from dementia or complications from it so they 'rule out' the six month to death part. They do recertify over and over again.  Some get off and go back on and some stay on.  

The important thing for me was that because mom was falling, her residence had to send her to the ER often.   With hospice we could prevent all of the interventions that would have to happen for her with the falls.  They provide lots of services and work with you and the staff if she is in a memory unit. 

feudman

Lots of good info here, but I wanted to clarify a few points:

You do NOT need a doctor's referral to apply for Hospice. It is THEIR doctor who makes that call, based on the their nurse's evaluation. YOU can simply call the Hospice of your choice and apply.

Many folks seem to think that for dementia admissions, the patient must have a 6 word or less vocabulary. Generally, they will be looking for any symptoms or characteristics of being in stage 7 on the FAST scale, but even that is flexible. It IS true that each Hospice provider can vary in admission criteria, so if one turns you down, another may still accept you.

A previous poster said he/she couldn't think of a drawback to being on Hospice. While its true there aren't many, some hospices are easier to work with than others. You may have issues dealing with some staff members, personality or hygeine wise, or not being punctual, etc. During covid-19 era, these are people living in the community, and their living arrangements and lifestyles are unknown to us. I just got a phone call from Hospice telling me the aide that has been washing up my DW 3 times a week just tested positive. 

I would urge those of you asking about hospice to not wait until you think your LO is "ready" based on a guess of their remaining lifespan. Start looking into the different providers and what they offer (location of their facility, staffing levels, references, etc.) It certainly true that many applicants could have been admitted much earlier.