How do I learn if my 87-year-old husband suffering from dementia is qualified for hospice? The idea of 5-day respite care looks good to me.

Medicare is the source that pays for respite if you husband is under Hospice. Ask either Hospice for information or Call Medicare call center for guidance.

Also, check with your secondary advantage plan if you have other coverage. I am sure they can provide assistance.

No, sad to say, without a diagnosed illness expected to bring about his death within six months, Hospice is not an option. Some docs are fudging now to get extra care for folks, but I think your husband has no underlying condition a doctor can "use" to order Hospice for you at this time, but that would be a question for your doc, as that's who has to order it. And I think this will be a year in which I would recommend you ask MANY questions of MANY entities.

Now Respite care is an option, but it will likely be self-pay, and it's be expensive. You can call around to facilities in your area. I had a friend who had to go to Mexico when his Mom fell ill periodically, and had to put his partner in Respite when he did so. His partner thought of it as his "going on vacation without "Joe".

Problem here is your hubby's condition sounds to be progressing rapidly, and doesn't sound like early stages to me anymore. Due to the sort of shadowing and obsessive nature of this I think you cannot long last doing in-home care. This becomes something that requires several shifts of several people each.

I'd begin now to arrange some in home help to the extent it can be afforded. While hubby is watched over, whether in day care program or sitter, you may explore access to help and future plans. I'd recommend beginning now with lists for New Year:

1. Call your local council on aging; ask for recommendations for respite or for day care.
2. Call in all the help you can from friends. Friends often say "I wish there was something I could do". Let them help. Shopping, a meal here and there, whatever you need help with that they might be willing to do.
3. Call local care centers and check out Respite costs. He is going to need memory care. It is pricey.
4. Look into agencies with home help. Some require minimums such as 3 days a week four hours, but they can prepare meals, help with shopping for you, do light cleaning, and etc.
5. Look into care.com. NextDoor. Support groups. Maybe sitters here and there.
6. And while all this is being done consider the future. Hubby may need to go into care soon. Look at places. Take the tours. They will be nosey about assets. So what. Tell them. Explore. Ask questions.
7. See an elder law attorney. Learn all you need to know now about assets, and divisions of assets and about how to protect your OWN assets for your own future needs.

I am so sorry. You need rest and you need information. And here am I giving you more to do. But remember, you are early on this and can take your time.
Let this be the year you see to it that you get both help for yourself, and a sort of inkling about the future.
You can't plan everything out as dementia is all about expecting the unexpected. But you can try, gather info, have an inkling where to try to access help.
I sure wish you luck and hope you will include us in this journey because you will learn so much to share here.
We accept "vents" to let the steam off, as well.
Good luck!

My father is now enrolled in hospice, he has dementia. The best decision we made was to ask his doctor if it was time to call hospice. She felt it was, so she had them get in touch with us and their doctor came out and evaluate him. The doctor evaluated him based on the Functional Assessment Staging Tool (FAST Scale).
So call his doctor or call hospice, you never know unless you try.
My father was at 7a in the FAST Scale, here's the link to the scale, https://www.alivehospice.org/wp-content/uploads/2021/06/HospiceEligibility-2021.pdf
hope this helps

Often times when trying to get your loved one into a care facility there is a waiting list. Doing your research is critical. At least getting in at a decent place requires planning and getting on a wait list shouldn’t require a downpayment. These types of diseases start way before we recognize them. They are subtle in the changes we see. Telling someone who has the disorder your husband has to clean up after himself in the bathroom is futile. He can’t remember why he’s doing it, or what the proper thing to do is. It is also dehumanizing. Unfortunately you have to face the fact that he is reversing in his understanding of the world and returning to child-like behaviors.

finding ways for you to de-stress are important. Learning how to cope with these behavior changes and getting the help you need will go a long way in helping you through this challenging time. Though it doesn’t come without worry because no matter who is taking care of your loved one, you still need to be vigilant in asking sure they are carrying through with proper care, and carrying out what has been agreed to especially the care plan.

The good thing about hospice is you can go on and you can come off of it too. Which is a common misconception families don’t understand. They hear the word hospice and they think it’s curtains. That’s not always the case. Some of my residents have gone on hospice, gone off, went back on, and back and forth.

Respite can be a good thing to if you don’t want to go,any of the above routes and take a small break.

Medicare pays for home hospice

I totally understand you as I am in your same situation but with my 90 year old mother and I work full time from home, I’m exhausted don’t have a social life I go weeks without even going out as I am afraid to leave her alone.

I get hospice care for my husband when I need it. It is self pay. If you have the funds, check with your local skilled nursing facility. Most have it, with a variety of minimum days for a stay. It's well worth the money now that we are no longer going on vacations together. I visit my kids out of state or my mom from 6-14 days. The peace of mind is so good! I have had people come to the house before but nobody can actually do all the things you are doing for your loved one. Even a RN may feel that the situation is untenable and he needs to be in a facility with multiple helpers when you are away.

Have your husband's doctor recommend him to Hospice Care. As your husband continues, he will need to be placed in a personal care home. Unfortunately, your husband's health can change rapidly.

Olive
Call a hospice company or two and ask them to evaluate your DH for hospice. If you call a home health company that also has a hospice group, he might qualify for one or the other. If he isn’t to a hospice stage at this point he might qualify for home health and then transition to hospice at the appropriate time.

When you speak to these folks ask them for their list of respite facilities in your area. You might find a small care home or other space that might provide him a bed for a few days for private pay if he is not yet eligible for hospice. It’s good to know where help is and how to qualify in the future.

A few things first...
Generally the Respite is about 5 days 1 time a year not every 90 days.
(There is a recertification process that can happen every 90 day that might be why you have heard 90 days)

You need to be IN the bathroom with your husband to monitor him.

Make things a bit easier...put a small trash can next to the toilet. That way toilet paper can be easily disposed of and you don't have to bleach the area.
He will not remember how or why he is cleaning the area.

Your doctor can refer to Hospice if he thinks your husband will qualify.

If he doesn't look into getting a caregiver that will come in and help out.
there are programs that can help.
If your husband is a Veteran check with the local Veterans Assistance Commission or your States Department of Veterans Affairs. Or contact the VA closest to you.
You can check with the local Senior Service Center and see if there are programs that you may qualify for.

In my area there is an organization called The Gathering Place. They meet at several locations throughout the area on a regular schedule. The caregiver drops off their person for about 4 hours. Caregiver gets a break. Your person gets activities, meal, socializing, etc.
There is an intake process, prior to first visit. All free.

In Nevada the 5 day respite is every 60days after the initial 90 days. I called a local hospice who came and evaluated him. They immediately accepted him and that was Feb 2024. Medicare covers the respite, their mds, nurses,,showers given by their aides. I pay his aide to sit if I go out to dinner. Please care for yourself. We definitely need frequent breaks.

My husband has vascular dementia and is further along in this terrible journey. We have a palliative nurse and social worker come in monthly to assess him. This was requested by his oncologist (although I’m sure his neurologist could do this as well). They, along with his doctors, will be able to determine when he is ready for hospice care. He refuses to shower and the nurse was able to recommend Scrubzz. He uses copious amounts of toilet paper when he urinates but only wipes after a BM if I’m standing there. I keep a plastic bag lined trash can next to the toilet. He would have no idea how to clean up after himself. I wish you the best of luck in finding respite care. I have a woman from Visiting Angels come in for 4 hours a week and a daughter who comes in for a few hours a week as well. I don’t know what I would do without the breaks.

@Sunflower34... Thanks for the info on Functional Assessment Staging Tool (FAST Scale). I began googling it and found a website with very good insights and resources.

https://www.generationshospicecare.com/2022/06/13/dementia-we-dont-just-forget-end-stage/

I learned my husband is in level 6 stage which I am not surprised but the scale provided a broader long term picture of what may come. I've used tests similar to what is used at the doctor's office but they only provide general insight to dementia progression.

I know Hospice can be a great service and will use it when I feel it is right for us. Right now we are blessed with VA benefits including 28 hours per week respite and encourage everyone who may be eligible to definitely check into the entitlements for your love one. The VA has finally recognizing the value of family caregivers and creating new programs, so hopefully the government overall will do the same and expand Medicare caregiver benefits.

Our neuro-psychologist shared this website with me.

https://www.cms.gov/priorities/innovation/innovation-models/guide

Hopefully this is a step in the right direction however it seems to be looking way into the future, but hopefully they will learn enough sooner to bring help sooner.

Olive, oh how I feel for you. I was doing all that until my husband passed in September, and I think I am probably a good bit younger than you as my husband was 71 when he passed. Dementia stinks, we lose the person we once knew. Someone said to me once that they were worn out with being their husband's slave and I realized that was exactly the position I was in with my husband. I did it all, just as you are, while trying to keep things calm and peaceful and not cause him to get upset (which was very easy to do), and the only time I had to myself was grocery shopping one day a week and church on Sunday.

I am not sure hospice is the route you can take right now with your husband. You may be reaching the point that a memory care facility is needed. My son suggested that option just a month before my husband passed. (My husband ended up passing from sudden kidney failure after being hospitalized for congestive heart failure. The lasix they gave him caused his kidneys to shut down, something not unexpected. They did send him home on hospice care and he passed in a week.) Had my husband not passed, I do think, now that I am able to look back objectively, that he should have been in memory care.

Have you had the same talks we had? "Don't ever make me go to one of those places. Promise me!" My answer was always, "I will do what is best for us," (which was definitely not a promise to not place him somewhere). Maybe it is time for you to consider memory care and get your life back. You can be his wife again rather than his caregiver.

Hospice requires that an elder be expected to die in six months. And with moderate dementia alone, they usually are not yet at this point.

This isn't hospice, but have you considered an adult day care center? They sometimes provide showers for an additional charge. They provide meals, snacks, and other activities. You will probably have to make sure the center always has an extra set of his clean clothes available in case he soils them. You'll get a break and he'll have additional socialization.

Thank you! I keep hearing that Medicare helps with Hospice. On my to-do list for next week. Bless you!

Although your funds are limited, you might look into respite care that you pay for out of pocket. Most care facilities offer short-term respite care with a 3 or 5 day minimum. You might decide your mental health is worth the expense.

If you feel he’s ready for hospice, it may be he also needs help in the bathroom. My MIL didn’t have dementia, but she was weak and in a lot of pain, I helped her every time in the bathroom, to make sure she didn’t fall, but also so I didn’t have a huge mess to deal with. I gave her wipes to use and watched carefully that she threw them in the wastebasket I held for her (we have a septic system), she would just forget they can’t be flushed. After just a few times I asked her to let me wipe her, she couldn’t do a complete job wiping and would get it on her hands and under her nails. It was just easier to help and fortunately she was willing to let me.

He can’t really learn at this point, so maybe preventing some of the mess would be easier?

To address financial concerns: Medicaid is a federal/state program that pays for long term custodial care for qualified recipients. There are strict income and asset limitations and it's different from state to state, but it can pay for a memory care facility. In some states Medicaid offers limited in-home help. It sounds like you may live in a rural area where resources like senior day care may be harder to find.

When we put my dad on hospice they said they just renew the "contract" as many times as necessary if they had not passed in the time expected. We also did not have to pay for anything as long as it was in direct relation to his diagnosis. (My dad was NOT on Medicaid either.) Hope this helps. Best wishes.

OliveBalla: Prayers sent for this most difficult of times.

Hospice care is a designated benefit for persons with advanced illness and a prognosis of < 6 months, assuming that the disease progresses at its normal course. There are “ markers” used to help determine stage and When there are significant changes like the ones you mention ( disruption of sleep, inability to care for his personal care, incontinence, etc. ) it could be appropriate to request a palliative care and hospice evaluation... You need all the support possible - as he becomes eligible for it. Respite care 1-5 days is one of the levels of care under the Medicare Hospice Benefit. It’s very helpful for caregivers. I don’t know where you live but would encourage you to seek a highly skilled and well regarded hospice and palliative care provider. Not all are the same. Explore their Medicare ⭐️Rating, and look for comprehensive services and highly credentialed professional team. Large community based nonprofit providers with fulltime medical director and experience with end stage dementia would be ideal. As a retired hospice professional, I know the caregiving burden is significant. You will need to know what resources are available and a social worker within a palliative care program can help. Many hospices have a companion palliative care service for those who need symptom management but may have a longer term prognosis. Hospice is the most intensive form of palliative care. Prayers for you finding guidance & support!

I work in Hospice. Several of our cases involve stage 6 and stage 7 of dementia. Stage 5 exceptions sometimes get made if in private home, and they have to reside in a private residence to get the 6 days, 5 nights respite. ( I call it 6 days/5 nights as it sounds like a mini vacay to the family caregivers). I tend to get dry about the grief process as my experience with grief the more time we spend ruminating or bargaining away our grief, it just delays the final stage called acceptance.
Stage 5 means they go in and out of orientation, possibly trying to hide their decline as they still have the part of the brain that tries to hide or shade their disease.
Stage 6 they might pretend to know things or dress up every day to go to a former job or to visit family or their "home" (home often some vague place), but they become so disoriented they don't recognize anything wrong with all of this. Think of it as a toddler's memory only working in reverse, music, culture, religion, childhood often the last memories during this time. Stage 6 involves incontinence, transfer risk, bed sore risk, fall risk, and increased sundowning, meaning late night behavior, wandering, agitation or anxiety about their person place or time, they might also get more infections which would qualify them.
Stage 7 the big differentiator fatigue or complete memory loss as they know longer talk as much, move around, they might forget to swallow, chew, toilet, drink and transfer, they no longer pretend to know the who or what of their day as they lose that and may not hold their head up or smile.
Depending on where you live the most liberal hospice agencies in terms of what they will take on, as in any "tom, dick or harry" do not have affiliations with local big hospitals, and have their own medical doctors who may write the orders for evaluation and the hospice admission order. This puts the supports in charge as anyone may refer to the hospice agency including family. I would sidestep the doctor that wrote "mild" and cold call some of the private agencies that have their own wizard of oz (doctor) to get 2nd or 3rd opine. Worst case you get some feedback and know who to call when more clear stage 6 or 7 occurs.
The hospices affiliated with the local big hospitals often control the medical business or community, and to maintain their grip they like to decide the who and what (profit)to take. We all compete with each other. Hospice a daily benefit under most insurance (like medicare) benefit that so many people have paid into for as long as they may care to remember. The person just has to show decline to stay on the daily benefit. My experience most people don't "get better" with dementia.
The supports tend to like hospice, a medical social worker/nurse will work with you on things like how to split up assets to qualify him for medicaid (nothing to do with the insurance hospice benefits) spenddown if that makes sense that he may go to an adult family home on medicaid which might for the long term care. They might graduate once they moves to memory care on medicaid or not, but at home it makes them more vulnerable. The symptoms described I would get an assessment. It sounds like a combo of late stage 5 into stage 6, although the late night confusion and incontinence sounds stage 6, I don't know not clinical, I just educate people on this for a living. I also write for fun:
Couple of my jokes:
I know how to look younger without going to the doctor. I work in hospice it makes me look youthful.
I know how to feel less depressed. I work in hospice as it makes me appreciate everything I may still do to help others including myself.
I went to meet a 97 year old man in the hospital. They asked me how old we are. He said we met at a year ago at prom and plan to get married. I had to explain I work in hospice.
I put in my advanced directives if I ever dress up to go to my old job, please tell me to run for political office in 2024.

I know exactly what you’re going through and how it feels. Not my spouse but my mother in law. We watched my father in law himself get so stressed out, losing weight, exhausted- it was killing him. We felt so alone and unsure if she was as bad off as we thought. It’s so hard to find the help we so desperately need. We were told about VITAS which is an affiliate of Hospice (here in Florida) it’s like a pre-hospice. A diagnosis of a terminal illness is what helped her qualify. I THINK she was able to use her Medicaid to pay for the service (she does not have long term care insurance- something that I will make sure I have in the future.) we were told by others that had used the same service, were able to get in-home help, however, the experience was much different for us. We are not exactly sure why, but the only services that we had from them was a nurse would come by once a week to check in and monitor medication’s, and also they would send an aide out to help her shower. they also offered limited free medical supplies, such as adult briefs, Band-Aids… Stuff like that. What we really needed help with, was overnight and somebody there for a few hours during the day. We still don’t understand why, but my mother-in-law didn’t qualify for that kind of stuff. Maybe it was because she hadn’t yet been deemed by the courts as mentally incapacitated and unable to make decisions for herself? We don’t truly know why. I think it might be most helpful to you if you were to call hospice and/or the VITAS service that’s affiliated with it if you have that where you live. Tell them exactly what you need. How many hours a day, or how many hours at night. And maybe it’s things that your husband can qualify for. Also, double check and see if your husband does just so happen to have long-term care insurance, because some home agencies might accept it and nursing facilities should accept it as well.
My mother-in-law eventually needed care that was beyond anything that us family are qualified to give her. It was a very long and hard road to get someone to see that she has dementia and just how bad it was at home. We were eventually able to have a few doctors assist us in her diagnosis, and my sister-in-law petitioned the courts and has full guardianship. We would have loved to keep mom home, we had promised her this our whole lives, but in making that promise, we had absolutely no idea it would get as bad as it is. So we ended up moving her to an assisted living facilities that has a memory care unit that is locked and secure. We are very fortunate, because she does not have long-term care insurance and has to pay out-of-pocket for a facility, and she was really good with her finances, her whole life. So we were able to send her somewhere really nice. I hope that you were able to get some answers, and the help that you need! I know exactly how rough it is and it is mentally and emotionally and physically draining. We have learned that we have to put ourselves first. Because we are no good helping as a team if we are overworked and over exhausted. And since you’re your husband‘s primary caregiver, it is even more important for you to catch a break. I will pray for you and your husband to get the help that you need. Take care.

I think one of the big challenges in sharing recommendations is that the rules and resources are vastly different between states or even counties. Here are some suggestions:

- Ensure your husband is seeing a gerontologist, not a GP, for his primary doctor. The former know all the resources and options, the latter can be easily fooled by patients on their best behavior while out.

- If you can afford to buy one, use a timed/alarm pill dispenser so you only have to mess with individual pill bottles once a week or month. I think the one we have for my MIL was about $80 on Amazon.

- Ask the doctor for a Medicare referral for home care. Not sure if this is state-specific, but in MN they can submit a referral for up to 8 wks of home care that includes PT, OT, social worker, RN, and health aide to assist with ADLs. Not a lot of hours -- usually just one hour per week each, but it really helped us out multiple times. Medicare doesn't pay for in-home long-term care, but they'll cover a limited run related to a specific condition where there is a recovery goal. The first time the goal was simply to get her evaluated and on a recovery track for living at home with Alzheimer's and various medical issues, and then the second one was after she had a fall at home.

- Try to speak with multiple social workers. We've spoken with 2 different ones from the 2 Medicare at-home stints, one from the local community center (county covers one free visit to discuss aging resources), 1 from the VA. Tell them exactly what your ideas, concerns, and pain points are and ask for resources and references.

- With limited resources, find out how the Medicaid elderly waiver works in your state. At some point, low assets & low monthly income are the ticket to accessing Medicaid coverage for a nursing home or memory care facility.

- In MN metro area, there's an org called Twin Cities Care (https://twincitiescare.com/) that costs families nothing, it's a small local biz where you meet with them, discuss $$ and needs, and they match you up with potential facilities and even go on visits with you. They know all the ins and outs, like some places require x months of private pay before they'll accept a Medicaid voucher patient, room layouts, activity programs, etc. I think in the absence of a similar group you're stuck doing a ton of phone and web research yourself, the next best resource I found was the social worker discussions.

- For the repetitive questions about schedules etc., try using index cards with short clear info, like "Tomorrow is Friday 1/16/2025" and then schedule, visit, etc. info that he wants to know constantly. For my MIL it's everything on a calendar (which caregivers at what time, medical visits, etc.). When she asks after a few times, we have her write out the card, and then say "look at your card" after that. Not a total fix at all, just one thing that's been of some use at this stage of her Alzheimer's. For your husband it could include some finances data - current balances, a checklist of bills paid, or whatever he most worries over repetitively.

All kinds of good possibilities here. I would like to add a possibility or two. In our case ( with seven different individuals), it seemed like the care system is so fragmented - few knew what the resources for my questions. I went down a lot of blind allies, but checked every reference I was given. Often although I couldn’t fit a given program to my loved one, the staff knew of other resources I could try. Finally, I think I have learned more from other caregivers, especially about where I could try than all the professionals combined. One uncommon response, depending on your lifestyle is church. I have belonged to two churches where I volunteered with special missions to the elderly where volunteers from the church visit for one or two 4 hour periods a week. I hope you will find resources in your area are more available than you knew. God bless you.

Medicare pays for I believe up to to weeks respite stay a year in a LTC facility.
You can find out more by calling some nursing homes/memory care facilities in your area. They'll tell you, and if they have availability they take care of billing Medicare too.

If you're planning on keeping your husband home, you're going to have to make some serious changes in your life and home. Starting with bringing in outside homecare help. Getting your husband's doctor to prescribe medications that will keep him asleep at night. You should consider a different bedroom because you need to get sleep at night. Putting him in adult daycare as much as you can afford will also be a great help because it will give you a much needed break during the daytime.

1) Call a few LTC facilities in your area about respite stays

2) Look into adult daycare in your area

3) Talk to a couple homecare agencies or look at a few caregiver profiles on a site like care.com if you may want to hire private care

4) Call his doctor and ask him to prescribe some sleeping medication you give him at night