I'm sorry you've come to this road bpath. It's been 16 years since I dealt with hospice for my dad but the situation was very different from yours. He led the questions and my brother and I followed his lead. I'm sure they spoke with us privately but I can't remember what I may have asked. I was pretty numb.

DLM, I’m so sorry. Even after 16 years, I imagine that moment is still with you. Yes, my situation is different. The main goal is that hospice will enable Mom to stay in the memory care unit. Consistency is so important to people with dementia. It will also help if she does need to transfer to skilled nursing, as well as when her time on earth comes to an end.

Like DLM said every situation is so different. My dad walked into an ER, he was admitted and 2 weeks later he was being moved to hospice an 48 hours later he was gone. I will say we took the recommendations of his nurses and my mom, and my brother and sister have beautiful memories of the hospice experience.

We went through a very difficult last year with my mom, who died in May. She didn’t go through hospice so I can’t share that with you, but there were multiple times when I called one of my closest friends, who is a hospice nurse, for the truth. So my advice, when you are interviewing is to find someone you can communicate well with. Someone empathetic but honest.

Have seen some families very upset when hospice would not authorize (pay for) an emergency department visit for their family member.

Bestyears, good advice to look for someone who I can connect with, thank you.

mdln, that is something to consider, Hospice is a Medicare benefit, but they can override something I would approve? And lead to Medicare not covering something? That is a good question for me to ask about, thank you!

Don't be hesitant to ask any and all questions when you talk to each agency. They all seem to be a little different.

Make sure that you understand the process and how they will ensure that your mother is comfortable throughout. Since she's already in memory care, I'm guessing that her basic needs are already being handled. How does the hospice care interact with the staff in the memory care unit? Will hospice continue if she does need to transfer to a different unit? Do they handle that or does memory care? How often will they see your mother? What's the scope of services that they provide? How often will they interact with you?

You might want to talk with the staff at the memory care unit if you haven't done that already - I'm sure they have dealt with many of the agencies and they may share their opinions with you.

Don't hesitate to reach out if I can be any help to you.

Hugs to you. Take care of yourself! Will keep you in my thoughts.

You may want to reach out to a hospice agency director/owner to ask your Medicare questions. They can be very helpful and help you quickly navigate the ins and outs.

Mom was in hospice care for 8 months before she passed away. Her hospice care was covered by Medicare, so not sure what mdln is referring to in their post. The families could have taken them or called for an ambulance. Mom had to go after a fall, Dad and I took her. After her fall, the Dr recommended her for hospice. I had tried to get Dad to agree to it a year before. Mom was not going to get better. Hospice is not just end of life care. It can begin and be extended/renewed as long as the patient is declining or there is no hope of recovery.

Since your mother has dementia, I would request consistency with the nurses/aides and days/time frame for their visits. But if she is under their care for months, there will be personnel changes. Since Dad selected the company with the recommendation of her Dr, so I am not help there. I was often visiting Mom when hospice came, and they were so caring. It was a good experience.

busjane, thank you. I have met hospice workers at the facility, and the director and the nurse were very positive about the possibility of it. One resident has been on hospice for 2 years, I may ask who the agency is, including if it has been the same agency the whole time. Good point to ask about consistency of personnel. I know turnover in home health is high, and likely in hospice as well.

I am sorry you are facing this, but I hope it will go smoothly for you.

Both of my parents went into hospice -- my dad was insistent on it well before the time came and he made the decision for both of them when the time did come. While I was fine with the concept, I was disappointed in the execution. In both cases, I didn't feel like the hospice service really did much of anything for us. They were eager to be signed up and start collecting their fees, but they promised a lot more than they delivered. In the case of my mother, they added a layer of red tape and delay to getting medication or any kind of changes. Also, understand that hospice makes the health care decisions for your loved one, even when they aren't there. You may not like their choices. I didn't get to chose the service my dad used, and I didn't get to interview other services. Talk to many, get referrals and chose carefully. I know many people rave about their experiences. It just wasn't my experience.

I’m sorry that You are at the point that hospice may be necessary.

Every case is different.

Once hospice care starts all care was taken by over by the hospice team. In my mother’s case, it was hard for her to not have her long time doctor seeing her. He was kind explaining the reasons to her and would call to say hello every once in awhile.

It has been my experience ( mother, brother and a sister were cared for by hospice) that once hospice is in place any emergency care would have to go through hospice. Example; if my cancer patient relative happened to fall, we were to call hospice and not 911.

The Hospice Experience was wonderful for our needs.

We had Hospice care provided for my husband just before he passed in May. They were extremely kind and gentle with him. They had hospital furniture delivered in less than 24 hours and knowing I had someone I could call was comforting.

When hospice took over my husband’s care, they told me that I couldn’t take him to the Oncologist or ER because they were now the primary care taker. I could be wrong, but I think the reason you’d have to call them is so they could facilitate her care through channels they already have in place, they’re very organized. It’s hard to imagine that if your mom were to fall or hurt herself, any care she might need would be denied.

I’m so sorry you’re finding yourself at this point with your Mom, but I think in the end, she’ll be in good hands and that will offer you some peace of mind. I know it did with me. All my husband wanted was to be home with me and hospice made that possible. ((hugs))

ETA; I should probably add that the care my DH received was through our own insurance and not medicare.

It is not that medicare doesn't authorize hospital care. I'm not sure if I can remember correctly or explain correctly, but I will try. We used hospice for my mom over ten years ago. Strange, but today is actually the 10th anniversary of her death. We had hospice for about 5 months. When you do the paperwork for hospice (which my father handled), you sign over medical care to hospice. You use their drs, nurses, etc. So unless an emergency, no hospital involvement. However, my mom had what the hospice nurse thought was an emergency and she was taken to the hospital, but paperwork had to be done to take her off hospice and then when she returned home, paperwork to put her back on hospice. I assume this all has to do with medicare. I will say that for us - hospice was a wonderful thing, so much help for our family. We had a wonderful hospice nurse and they are able to recognize what is going on, the signs of death, etc. Hospice was one reason we were able to keep my mom at home during her cancer illness and we were so thankful she was able to be home not in a hospital, not in some type facility, etc. We had private caregivers, my sister and I and hospice.

As far as questioning, choosing hospice, etc. we really did not have much of that. My mom's oncologist was a very empathatic individual and advised us as to a hospice group he felt would be of help to us. We met with them and immediately felt both relief and support. I cannot stress how much they helped us. That is the thing about Hospice, the can/will minister to the whole family, not just the patient. There were many more services offered, such as clergy, counseling, etc. which I imagine would be very helpful for those who perhaps do not have a church, a support group, etc. I would not hesitate to recommend Hospice (particularly the agency we used) to anyone.

ETA: We also had hospice care with my grandmother a few years later. She had them for about 6 months, but did not progress, in fact made a bit of a turn around, so we discontinued. She was in memory care. When she suddenly/quickly declined many months later, hospice was again picked up. She had hospice a very short time then, but she stayed in her memory care facility till the end.

I'm so sorry you are going through this. It is never easy, but in our experience, Hospice was a blessing.

Thanks, the “who controls medical care” and “how is everything paid for” are important topics I need to clarify, I guess with Hospice. My worry is that it adds another layer to Mom’s care. Right now, when staff suspects a UTI, they can commence antibiotic even before the test result is back. Under hospice, would that still happen? And what about other medications, or changing medications she takes now?

I asked the doctor the pros and cons of hospice for my mother, and he said he really could not think of a con. While I like to think that’s a good thing, I wonder if he is looking at it from the facility’s and mom’s position and I don’t know if my position is in the equation.

Mom would would stay where she is, that is her home now.

One of the big benefits is, that Mom’s sister and I would be able to visit her inside. Right now, visits are held outside, but as it gets cooler that wI’ll be difficult for Mom, as well as for her sister.

Four or five years ago, my mother went into hospice care and was returned home with severe respiratory and heart issues. The personnel were so caring and thoughtful, and real angels in their work. They arranged for all the equipment and all those details, and we had an aid on duty to assist. It is palliative care but they really took care of the whole person, including the emotional support from the social worker. When it is done right, it can turn out so wonderfully. In a fortunate and beautiful twist, she began improving and exited the program within the 90 day period. She lived for another few years until she passed, exactly one week after my father passed.

Mdln, do you have personal experience with hospice?

So sorry you're going through this....sending you thoughts of courage, strength and comfort.

Bpath -are you are that UTIs often present as dementia in elderly nursing homes patients. We experienced that with my mother. Though I had never heard of it before, I’ve since done some reading, and it’s quite common.

Bestyears, that is such an interesting symptom of UTIs, isn’t it? It’s actually a bit beneficial: even when a person can’t tell you that something is wrong, the behavior change can suggest that maybe you should test for a UTI. We learned that when mom was at home with her caregiver. She has had dementia for several years, now, and has been in memory care for 2 1/2 years. They are stellar. One major goal with hospice is that it would enable mom to stay in this unit, rather than move to skilled nursing. And should she have to move to the skilled nursing floor, they will be a part of the continuum of care, which will hopefully make the disruption less disturbing for her.

Annie, thank you.

My MIL also has dementia and lives in an ALF. She went on hospice care last fall and it's been a godsend. I didn't really understand when the director first suggested it but it isn't the standard imminent-end-of-life care situation for many elderly, though of course it can be. It is more a supplement to ongoing care with some very important and positive added features.

So now hospice care workers come every morning and help get my MIL up, get her dressed, attend to her personal hygiene and feed her. This is very important-it may vary by state but legally the director of our ALF told us they cannot feed residents, ie as her dementia has progressed my MIL has great difficulty picking up food, getting it to her mouth etc. She can no longer use utensils at all. So the hospice worker helps with that. Generally speaking although the ALF is a good one and the care has always been excellent, she actually *looks* so much better with the hospice support. Her grooming, clothes, nutrition....it is all being supported every day with additional competent caregivers.

Also since hospice becomes the primary care provider if/when there is a medical emergency the hospice team responds and handles it. This has also been hugely helpful for us. Hospice started after my MIL had fallen 3 times in one week!

It wasn't the staff's fault, she is beyond stubborn and simply kept getting out of her wheelchair then over she'd go. Each time she fell even if she was fine, and she was, the ALF policy required them to transport her to an emergency room where she had hours-long workups etc. Her falls, increasingly frequent even aside from the week from hell, sometimes happened at night which usually meant sundowning set in and by the time we could get there she was hysterical and/or hallucinating. The falls have lessened a great deal and the few she has had resulted in the hospice care team evaluating her immediately at the ALF then deciding she did not need to be transported.

Sorry to be verbose but these are some of the benefits of hospice for an elderly person with dementia who is institutionalized. It's been a very helpful and positive addition to her care and basically Medicare covers all the expenses so in many ways it has become as if we have private care additional staff with her at no cost to her or us. Not that money is a primary issue but just to point out the 'extra layer' hasn't meant any negative implications, only positive so far.

Running, thank you thank you thank you. That is exactly the situation we are in, and it is so helpful to hear your MIL’s experience. I actually brought up hospice to mom’s care team because they were listing so many ADL needs, including with meals, that I knew (and they concurred) that it was heading to a recommendation that she move to skilled nursing. If she can get care similar to your MIL, I know she’ll be much happier to stay.

My dad was on hospice care in his final months with Alzheimers in a SNF that was part of his continuing care community. I just wanted to flag one issue that I don't think has been pointed out here - there are specific criteria for qualifying dementia patients for hospice. You can google this, but if I recall correctly, the criteria involve weight loss and speech, among other things. I believe this is simply because it can be difficult to know with any certainty when a dementia patient has reached a life of expectancy of less than 6 months.

The first time that my father was recommended by his physician, he didn't qualify because his weight had been stable for sometime and he could still articulate more than a few words. A few months later, he did qualify. I'm not really sure his condition had changed that much, but we were so grateful. We found hospice to be a valuable additional set of eyes and hands during those final months, and crucially they focused on his comfort which even a great SNF has limited resources to devote. In my dad's final week, which occurred over Christmas after he stopped eating and became nonresponsive, the hospice was an incredible help to us in feeling secure that he was not suffering - the SNF doctors and nurses were just far more clinical, even though they loved my dad as well. Hospice is the work of angels for sure.

Mdln, forgive me if I'm misinterpreting, but your links seem to point to studies of hospice facilities--places or institutions--not the hospice services brought in to supplement/replace the existing medical care a person is receiving. I could be wrong, though, that there's a difference.

Bpath, my father had hospice care brought into his SNF last summer, and it was an end-of-life situation. His circumstances were different than those of your mother, but I found the hospice nurses to be receptive and helpful. It's good you have 3 agencies to review--talking with each will lead you to understand what you may not already.

When reviewing the list of services here, it explains Runninginplace's post (like occupational therapy). But your question about UTI treatment is a valid one. Good luck with this, and my best wishes to you and your mother.

I just talked with one of the recommended hospice agencies, and they told me something I did not know. Medicare doesn’t cover physical therapy for someone in hospice. We routinely ask for PT following any event, even a UTI, and more often than not it is approved. Mom needs to maintain as much range of motion and strength as possible so that she can participate in her own transfers, propelling, and self-feeding to any extent possible. But once in hospice, medicare won’t cover it. This isn’t, of course, a make-or-break, just something I didn’t know. PT can write a home care Movement plan for the CNA and social worker to follow during their visits.

Hmmmm, my friend the hospice nurse told me that Medicare will pay for PT so long as progress is being made.

But not if they are in hospice, the agency said. I'm going to double u check that!

Bpath, it’s important you meet with a hospice manager and discuss any and all changes they will be making for your mother. Meds and treatment may indeed change. Its very important you know what will be happening.

You may not be ready for hospice yet. And that is OK. Hospice needs to be a family decision when the patient isn’t able to decide on her own. Sending good thoughts.

There is also something called "pallative care" which is different than hospice. We were told about it a few months ago when my father had to be hospitalized. I'm not sure how common it is, I did not know we had it here but the hospital my father goes to has it. It sounded similar to hospice, but his doctor would still oversee his healthcare. I believe it is a plan to keep the patient comfortable, etc. but measures/treatment to extend life are not used. You may not need a terminal diagnosis for pallative care. I'm sorry I don't know much about it, but you may want to check into it also.

Bpath, I would not expect hospice to cover PT. You are talking about end of life care and comfort, not improving or extending life. We didn't have any issues with that line for my dad, but there were a couple for my mom. Those limitations on care have a lot to do with why I was not impressed, as well as not seeing any real plusses. If you get get the benefits, just be clear on what you may be giving up.

I am so glad for you bpath.

bpath-My dad was under hospice care for over a year before he died. He already lived in a skilled nursing facility, and hospice was adjunct care. He had congestive heart failure and made the decision that he did not want to continue taking medications except comfort ones. Medicare covered his hospice care 100%. The doctor at his facility would request extensions from Medicare, and they were granted.

I am sorry you are having to make these decisions, but we found the hospice staff and nurses to be wonderful. They knew when his time was near, so one of my brothers, my mom and I were able to get there and be with him when he took his last breath. They even offered us free grief counseling after he died.

I am thinking of you and praying for the best outcome in a difficult situation. Hugs.

I’m very happy this is working out so well for you both. Hugs to you.

My experience was like Texanjana's except it was my brother who died in 1995, at age 43, in our mother's home. His nurses couldn't have been kinder to him or us. Round the clock care for several months. They were all wonderful.

I wish you the best, bath, in this difficult time.

I'm glad you are receiving small mercies during this time.

Thanks everyone for all the suggestions, experiences, support, and love.