I should have added they came and pronounced death and called the funeral home to notify and the doctor to do the death certificate. We just called them (at 4 am) and they came an hour or so later. It was helpful to only have to make that one phone call.
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Alzheimers patients definitely qualify for hospice, but there are certain parameters. Google dementia hospice requirements. I think they might need a comorbidity, like diabetes, or cannot do activities of daily living.
Eta I was looking for a link with the requirements, and found that the different hospice systems have slightly different requirements, so youāll have to ask your specific provider.
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Services will depend on what is needed. Typically itās a nursing visit 1-2x/week, HHA 2-3x/wk, volunteers for respite or just a visit once week for up to 4 hrs, and social work, and pastoral care as needed. Hospice will cover whatever durable medical equipment is needed and medications for comfort care. They are also on call 24/7 instead of calling 911. There will also be bereavement service for the family afterward.
In terms of qualifying for services, there are medical criteria that need to be met that vary depending on diagnosis. Some illnesses are harder to predict life expectancy than others. My grandmother qualified for hospice for 2 years. She has a dementia/failure to thrive diagnosis. She continued to qualify because of weight loss, falls, and recurring infections.
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We had a nurse visit twice a week, an aide 5 times a week, a social worker, chaplain and volunteer.
Hospices vary in the interpretation of the ā6 months to liveā and most dementia qualifies, as do many other health conditions, such as congestive heart failure or COPD. The mention of no treatment applies only to the hospice diagnosis. So if you are on hospice for dementia for instance, you can still treat your other issues and remain on your meds.
Hospice is covered by Hospice Medicare which is separate from regular Medicare. Regular Medicare will still cover meds and treatment for those other issues.
My mother was on hospice three times, twice for more than 6 months.
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Those phone calls- I would get 40 a day- are āperserveration.ā Docs and hospice nurses wanted to treat for anxiety but that didnāt work. I saw it as more of a brain glitch where the calls somehow arenāt being recorded in the brain, so to speak. I finally slowed the calls by moving the phone around, unplugging it and generally making it harder to call. It was a hard thing to do. I had to do something because she was calling the front desk of her AL when she couldnāt reach me, and they were talking about making her leave.
I could answer that many calls in a day. My mother died last year and I still have the deleted calls on my phone, the ones i didnāt answer.
@Youdon_tsay Q/A, though based on experiences with my mom who had different situation than alzheimerās, very sharp but on O2 and becoming less and less mobile.
If my mom qualifies, what kinds of services could we expect? - I think that can depend a lot on the local Hospice org and patient/family preferences. Example - They had us switch to their contracted company for O2/equipment (free). The bed was a godsend for her, but I could see how the controls might confuse your mom.
How many times a week would they visit? What kinds of things would that do to/with her? Mom was disappointed a nurse needed to check a minimum of every week (sometimes every other week). I think more nurse visits were possible. She declined MANY services for shower help, home aid etc. She was in low income housing, and itās possible that did qualified her for extra help.
NOTE - KEEP DOING YOUR GOOD WORK ON RESEARCH. Lots of good things with Hospice (at last the local flavor I know here), including pre-determined easy steps at the very end (no ambulance, rep/chaplain came to house and made all the required call). BUT everybody in family would need to be on board with the fact that Hospice requires you to stay with the scheme, not seek medical treatment to extend life. When there is an emergency situation, you call Hospice not an ambulance. No ER visits (unless I supposed directed.) You deal with Hospice docs, not the patientās docs. Some prescriptions might not get renewed. Againā¦ things may vary with your Hospice Org, Alzheimerās. Just doing a ābrain dumpā here in case it helps.
BUT everybody in family would need to be on board with the fact that Hospice requires you to stay with the scheme, not seek medical treatment to extend life.
Again, you can seek treatment to extend life as long as the treatment is not for the diagnosis used to qualify for hospice. This is an important point to understand.
You can also go off hospice for one day, for a treatment, and then go back on. We did this with my mother when a doc wanted a CT scan, though in the end we were able to argue that we needed tat CT scan to help with pain relief.
You deal with Hospice docs, not the patientās docs. Some prescriptions might not get renewed.
Neither was true with our hospice. We continued with the regular PCP and benefited from additional professional expertise from hospice. No meds were discontinued though we were given the option to stop blood thinners and we declined to stop them. Any meds related to the hospice diagnosis would be stopped. If dementia is not medicated, that means no meds are stopped.
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Thanks for the correction. More on the topic.
https://www.1800hospice.com/blog/see-my-doctor-during-hospice/
But was the friendās mom in VA? My main question is if VA is somehow different because the law to me reads end of life because of the 6 month thing.
The rehab did suggest to begin hospice at the last doctor/rehab stay, but SIL declined. That was 4 months ago. I would think they (SIL/BIL) would know more since they worked in a hospital for 30 years (BIL)/10 years (SIL) plus she actually worked in a nursing home. But who knows. I just know their quality of life is non existent.
The 6 months to live requirement is often treated loosely, as I said. Especially for people with dementia, whose lifespan is hard to predict. In our experience hospice will even use dementia to get Hospice Medicare coverage, when the real problems are extensive but murky in terms of what diagnosis to give Hospice Medicare.
@Colorado_mom many people think that going on hospice means giving up all treatment, all meds, never going to your own doctor, etc.etc. This is very frustrating for hospice organizations. I did volunteer training at our local hospice and they talked a lot about this. The very word āhospiceā triggers fear. Our hospice changed its hame so āhospiceā is no longer part of what it is called.
Hospice Medicare is federal so the regulations apply in every state, but what does vary is how stringent hospices are about admitting patients. We have two hospices in our area, and one admitted my mother, the other didnāt, at one point. The one who didnāt had both Palliative Care and āBridge to Hospiceā programs to offer before hospice.
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Hospice works with a personās primary care physician. They are an integral part of the team.
Iād also recommend interviewing a few programs if there are more than one in your area. There are differences in programs that do just the minimum required and others that go above and beyond.
Some treatments, no matter for what, are not consistent with hospice and if patients/families change their minds, they do have to elect to go off hospice. That generally ācostsā the patient one of their benefit periods.
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Actually, different hospices have different rules. Some require you use THEIR mds abd wonāt work with patientās md. YMMV. My friends switched hospices for their dad because they didnāt like the one who wouldnāt work with their dadās doc and wouldnāt treat his urinary tract infection which was causing him to be very confused. The hospice they switched to was happy to work with his old md and treat the infection so he wasnāt so confused.
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My fatherās hospice (which was residential, not in-home, and it was also not part of a other AL facility) asks the PCP if they would like to continue to coordinate care, and when the PCP declined to do so, their doctor took that over. Mainly that meant ordering the painkillers in consultation with the RN, arranging for PT.
Nearly universally, hospice families wish they had started sooner. Thereās no reason to not have a consultation and at least see what choices there are, when/if the time comes.
As for being present at end of life ā my Dad was completely unconscious the last 48 hours. It did not make a bit of difference whether we were there or not (this is still hard to face, but nevertheless true). I thank @compmom for warning me about that likelihood. The week before, he was awake maybe 40% of the time. The month before, he could talk, interact irregularly, and enjoy food. My point here is that family has to decide what is valuable to THEM, and travel for that. I would not trade feeding Dad and reading to him for any amount of last moments of life, but thatās me. Thatbeing said, you are bound to have regrets no matter what, so go with your gut instinct.
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So true!
I was vulnerable to our cultural view that at being bedside at the time of death is important. But 50% die when family leaves, I was told, even if they leave for a short time.
I value @greenbuttonās suggestion that what counts is time when our loved ones are conscious and able to interact. So a visit two months before the person dies, may actually be more helpful that seeing them in their last hours.
I was joking with my mother before the morphine injection, which rendered her unconscious until her death three days later. And since I was alone in her hospice room for two days, I went home to shower and get a book and she" died alone" while I was on my way back.
@greenbuttonās post helps me see, or begin to see, that it is the 7 years of caregiving and interactions in the weeks and months of decline that really count. It has been a year and it takes time.
All of our experiences can help others avoid the pitfalls and enhance the good moments. Thanks @greenbutton!
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When my father was calling my landline nonstop in the middle of the night I deleted that number from his phone and put my cell instead. I have my father blocked on my cell, I check it regularly to see if he has called and call him back a reasonable number of times. I know none of these calls are truly emergencies, as his nursing facility would call if something was truly wrong. Blocking him was not an easy decision to make, but it has retained my sanity.
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It was a blessing when my mom stopped being able to use her cell phone. I would call the the front desk at the facility at a set time every day when they knew she was near by and we would talk that way. When family was around (usually twice/week), we would FaceTime but I donāt think she really got that it was really me and not a random video in the last year of her life.
I donāt think it is possible to not have regrets at the end of life. No matter how comfortable and peaceful of a passing, it is still such a tremendous loss for the family. I hope everyone going through this now gives themselves a lot of grace. Hugs to all!
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I have a friend whose mother who lived with them was on hospice care for years. She had dementia.
My mother refused hospice care for my father when I brought it up ā not sure why; imagine it had to do with her preconceived notions. My father was put on ācomfort care,ā and ended up dying a few days later. There was no mention of hospice care almost a decade later when my mother was failing; again, she was put on ācomfort care.ā A sib disagreed and wanted a second opinion (I told him then he could come and arrange for that second opinion, as I wasnāt going to do it. This was the sib who visited my mother the least.)
That brings me to the point of the elder being near a family member. This often places an increasing burden on that local family member. The other family members (in particular, sibs) need to be aware of that. I was the local sib, and I didnāt like it at all (for reasons Iām not going to go into here). I didnāt consider it a āgiftā or a privilege. My sibs knew THEY had the gift of NOT being the local sib.
I was present when both my father and mother died, both times the only one of my sibs to be there. I called my sibs, and they and their kids were able to say goodbye over the phone to both of them by the end.
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When you realize your loved one will need Hospice, check out the various Hospice agencies available and ask around with people you know, as well as PCP. It doesnāt matter if it is āfor profitā or ānot for profitā IMHO ā for example some of the not for profit spend the money that would be profit in ways that may not be directed to better patient care, nor does it mean that they have better caring bedside patient care and services.
Also the ācultural climateā and how that may affect your familyās desires for death with dignity. Be very careful with terms used by a Hospitalist like ācomfort careā (which in my FILās case meant total withdrawal of treatment, which FIL thought it would truly be comfort care). The Hospitalist had him alone and used a way to inflate FILās ego on making decisions for himself ā local son was in Cataract surgery, and DH was en-route. With no care for Covid, and stopping IV, it was not ācomfort careā.
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I felt the same way. I was the local caregiver for 8 years. That was 8 years of putting my D on the bus and running to my parents house 3- 4 days/week to do everything from showers and ADLS, to errands, to chauffeuring to doctors appointments, to cooking. I was totally burned out and after 6 years, finally got them to hire an aide at least for the personal care piece. It was absolutely exhausting and it cost me the ability to go back to work.
My H was forced to relocate out of state for work two years before my mom passed, and my dad made the decision to move them full time to FL. He lasted a month with my mom at home before moving her to a memory care unit. Best thing for everyone (and my mom improved the first year she was there and it was a huge relief for me knowing she was safe). My aunt became the local caregiver and would go stay with my dad and visit my mom 2-3 days/week. I was still flying down there all the time, dealing with middle of the night emergencies, and making all the arrangements whenever anything went amiss but it wasnāt the same stress as being in person. We wouldnāt have been able to do it without aunt and I thank god for her every day!
My mom is currently doing pretty well, driving herself again and using only a cane instead of a walker, mental health currently fine. I am the local one and work a few blocks away.
So currently my childless aunt is the focus. My brother is the local one for her. (My sister who is in the middle helps us both and my further brother appreciates us ;)) Aunt was recently diagnosed with uterine cancer and at 83 is choosing not to treat. My mom, having been a DON at a nursing home, a hospice volunteer, and just went through hospice for Dad in 2021, has been working on options and plans. One of which was the nursing home in my town, which was her hometown and she always talked about coming back. Iām okay with being the local one for both since she would have 24/7 care.
But, the kicker is she has still been āworkingā. She is a live-in home care aide and has been with the lady for like 20 years. Now that aunt is barely able to do anything, the ladyās family seems to be saying aunt can stay and they will have help come in but aunt will no longer be paid. Mom will try to convince her that room & board is payment plenty, and to NOT still do all the work. Aunt does not want to pay for nursing home, so every month she can stay where she is, is another $7200 saved. Not sure how this is going to go though and the other family could decide aunt cannot stay at any point. Dr. appointment tomorrow may yield more information on her prognosis.