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 Has anyone used Hospice for respite care? 
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Joined: Mon Sep 09, 2013 9:16 pm
Posts: 29
Location: Texas, USA
Post Has anyone used Hospice for respite care?
We're going through Hospice for respite care for my Dad. While speaking with a care facility regarding admitting him for a move there for a couple of weeks, to see how he would respond in case we wanted to make it a permanent move, I was told that Hospice will provide up to 5 days of respite care and that Medicare pays. Once we get everything finalized the Hospice folks will tend to him at home for several days, then he'll go to the care facility, in which Hospice will care for him along with the facility staff. If we decide to place him there permanently after this five days, we won't have to go through any more paperwork, etc. We will just convert to a private pay situation. Has anyone else had any experience with Hospice respite? I was surprised this was available, as Dad isn't bedridden yet and not near the end of life. Apparently you must have a definite diagnosis of Alzheimer's, Lewy Body Disease, etc. in order to take advantage of this help, as it is an incurable, worsening disease. The Medicare website says it can be used on an "occasional basis" (whatever that means!).


Thu Oct 24, 2013 3:43 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
Post Re: Has anyone used Hospice for respite care?
Hospice supposedly doesn't take a patient unless they have determined (by VERY STRICT criteria) that the person has 6 months or fewer left. So, I'm not sure what all this means in light of your saying "he is not near the end of life". When no particular diagnosis of disease exists, one of the ways hospice can determine eligibility is "failure to thrive", so they look at the weight trend of the person over the last months, have the person weighed at least several times a week, and then they can determine (or not) "failure to thrive." Do you know if they are doing this for your LO? I can't imagine that hospice eligibility varies that much from one part of the US to another, or are you in another country?

In my dad's situation, he was extremely ill, had lost probably 50 lb. (not intentionally) and yet he "failed" hospice the first time. He was immobile, incontinent, could barely feed himself, had somewhat frequent delusions, jumbled thoughts and could not care for himself AT ALL (he was in an ALF at the time). I was horrified that he didn't "pass" hospice, and in fact, didn't meet the "failure to thrive" criterion until a few months before he died.

He finally started receiving hospice services a few months before he died. It was a great service, supplemented the CGs at the ALF, and I'm not sure who was billed for their services - probably a combo. of Medicare and his private insurance. It didn't lessen the thousands of $ per month he was paying to be at the ALF but it was a big help to have them.

I don't know if I've answered your questions, so if not, please write another post. I'm sure others will chime in and try to help you too. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Thu Oct 24, 2013 7:38 pm
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Joined: Mon Sep 09, 2013 9:16 pm
Posts: 29
Location: Texas, USA
Post Re: Has anyone used Hospice for respite care?
Dad was "admitted" (I always think there's a "place" you have to be admitted to but that's not the case) to hospice "routine care" yesterday. A hospice nurse came to Mom and Dad's house, interviewed us, talked with him, did a physical, discussed the information provided by his doctor, filled out a mountain of paperwork, and he is now receiving hospice routine care. The entire process took about 3-1/2 hours. Someone from hospice will visit him at home for the next three days, as well as the hospice chaplain and social worker. Then on Monday he will be admitted to the nursing home for 5 days of respite care. Following the respite provided through hospice he will remain at the nursing home as a private-pay patient. I told Mom that hopefully we can visit the nursing home on Friday to fill out the paperwork in advance for that admission. He will be re-evaluated by hospice, I believe after 90 days, to determine if he still needs their support.

The hospice nurse did take measurements of Dad's arms at a certain location. She said that its not an exact science, but that's how they measure how they're doing physically as to weight loss, etc. He wasn't actually weighed on a scale yesterday, but I'm sure he will be. He lost 20 pounds between his doctors appointments in February and July. He is also considered incontinent. According to one of the ladies I spoke to, "admission" to hospice is also facilitated when a person has a definitive diagnosis of a disease such as Alzheimer's because it is, essentially, a terminal disease which gets progressively worse. I do know that it was a lengthy process, many legal papers had to be signed, his doctor had to present her scripp that care was necessary, etc. We know several older ladies whose husbands receive the same type of care through hospice. Both have been on the program for as long as a year, so apparently this is not something out of the ordinary.

This has taken a load off of our shoulders. But Mom continually cries even though she knows she can no longer care for him at home. I know that this will be worse on her than on him. I only hope she can go through this process without her health becoming even more impacted than it already is.


Wed Oct 30, 2013 11:58 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
Post Re: Has anyone used Hospice for respite care?
Sending you all lots of positive thoughts and big cyber hugs. It must be very, very difficult for your mom. I'd keep reminding her that she can't help your dad if her health becomes compromised, and that he wouldn't want her to suffer ill health by over-extending herself. Sometimes looking at it from another person's perspective can make a difference. Good luck, Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Wed Oct 30, 2013 2:57 pm
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Joined: Mon Sep 09, 2013 9:16 pm
Posts: 29
Location: Texas, USA
Post Re: Has anyone used Hospice for respite care?
Lynn,

Thanks so much for your input. I'm not really certain how hospice decides when to admit someone for care and what factors they take into account. I've been searching the web for that info ever since the suggestion of hospice came up. There is a very good article called Hospice and Alzheimer's Disease: One Family's Story at http://www.ec-online.net/Knowledge/Arti ... eknox.html

I hope this link comes through, as I'm not really certain about posting of links on this site.

I found the article very interesting as it goes into a little more detail about qualifying for hospice than I've actually seen on hospice sites themselves.

We had the first visit from an aide yesterday. She'll be back today to "freshen up" Dad, then Friday she'll come in and shower and shave him. I still need to talk with the nursing home today. We're looking at moving him there as early as Monday. It's weird -- I hate that this is happening, I don't want to move my Dad, but at the same time it's a relief because Mom will actually have a life to live again. She doesn't believe that yet, but I think as the weeks go on she'll get back to a semblance of her former self. At least she'll be able to leave the house without having to worry about getting back as quickly as possible.


Thu Oct 31, 2013 11:30 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
Post Re: Has anyone used Hospice for respite care?
Yes, your mom will settle into a somewhat less stressful routine, and your dad will adjust. She will probably get much better sleep too, which will help her overall health. None of us ever wanted to place our LO's either, and none of us ever grows up thinking "I can't wait till I'm old enough to move to an ALF or an SNF." It just is what it is and we have to figure out how to navigate life differently when we are dealing with a disease that is thrust upon our family. It stinks, but people will adjust eventually. Once your mom sees the care he is getting and has time to take care of herself she will start accepting and feeling better about the situation. Sending you all a hug - it's hard and you are doing the best you can in a very difficult situation. All the best, Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Fri Nov 01, 2013 9:05 am
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Joined: Sun Aug 25, 2013 9:15 pm
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Post Re: Has anyone used Hospice for respite care?
My Mom has been disabled from MRI documented strokes (and likely LBD that we were ignorant of) and had to be moved with hoists, lifts etc. so has been in our local nursing home for the last 2 years. Four weeks ago she took a dramatic downturn and has stopped eating. Only with much encouragement is the staff and we able to get her to take in maybe 300 kcal a day by spoon feeding. She is loosing weight rapidly. Her cognitive abilities are declining rapidly also.
My question is this: How do the hospice folks work with the nursing home staff? If we ask for hospice, will the nursing home folks feel that we think they aren't doing a good job? (Because they are doing a fabulous job and Mom feels safe and well taken care of).
Or will the nursing home aides be relieved because they will find the hospice folks helpful in decreasing the nursing home aides work??
Sure will appreciate your input.


Thu Nov 07, 2013 5:57 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
Post Re: Has anyone used Hospice for respite care?
People in different facilities react differently to hospice coming in and helping one of their residents. The ALF where my dad was was happy to have several extra sets of hands to help out. He was a 2 - 3 person assist in his final months, was in horrible pain for no apparent reason, so even changing his Depends, or giving him a bed bath was excruciating, so an extra set of hands that the ALF wasn't paying for was very welcome.

Others on here have had different experiences with their LOs' facilities and hospice so I hope they will weigh in.

You should talk with the nursing director and the director of the facility and see how they feel about hospice folks coming in there. I hope they will agree that it's a good idea. My dad really loved the hospice nurse and the hospice aides that came in. It also gave him some new faces to see and he looked forward to seeing them. Take care, Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Thu Nov 07, 2013 7:43 pm
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 247
Post Re: Has anyone used Hospice for respite care?
My mother had hospice care for about six months, after she was admitted to dementia care unit, seemingly in frail shape. Then she perked up and did better, and hospice time ran out in any case. The special care unit folks were delighted to have the hospice people coming by and helping, and it was clearly great for my mom. I found them great to work with, too. (Mind you, they are colleagues at my own medical school, which may have made it easier.) They also reassured me considerably by saying that the place my parents live is the best around.

My mother is declining again, almost nonverbal now though when she does make the effort to say something it's usually a coherent and appropriate sentence. She can still transfer but walking is mostly too hard. She eats less but her weight is stable (my father goes over a couple of times a day and feeds her grapes and M&M's, so could be she's getting more calories that way than I would think.) She is physically pretty robust still, especially for someone 97 with moderate dementia. So who knows how long this will last; we will definitely ask for hospice again, though, if the end seems to be approaching. They provided so many small comforts!

Laurel

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Wed Nov 13, 2013 1:38 am
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Joined: Mon Sep 09, 2013 9:16 pm
Posts: 29
Location: Texas, USA
Post Re: Has anyone used Hospice for respite care?
The nursing home where Dad is living now works closely with hospice. A number of patients there receive this kind of care. I'm not really certain how the relationship between the two is worked out, but it seems to be something that many nursing homes and hospices do. And it does give the nursing home an extra set of hands and eyes for those patients who need the hospice care, for whatever period of time that may be. Dad's hospice aide comes in 5 days a week. She showers him on Monday, Wednesday and Friday (this really perks him up!), shaves him, smacks cologne on him, freshens him up on the other two days, visits with him, etc. The nurse also visits on a regular basis. She was coming in as my Mom and I were leaving on Monday. It is my understanding that once a person begins to "thrive" again (gains weight, etc.) that hospice will stop services following a re-evaluation that shows this improvement. But anytime the patient takes a downturn and doesn't "thrive", then hospice can re-evaluate and the patient can be admitted again. I've read in any number of places that you shouldn't wait until you think the end is nearing to call hospice back in. If your Mom is declining, by all means contact your hospice agency and have them come back in to re-evaluate her.


Wed Nov 13, 2013 11:40 am
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Joined: Wed Nov 13, 2013 3:04 pm
Posts: 46
Post Re: Has anyone used Hospice for respite care?
After two rounds totaling six weeks of hospital care with six stumped doctors, they decided to admit my Mom to Hospice for symptom management. Our first day there, the Hospice Medical director tells me she is not eligible since she prob has more than six months to live. The Hospice worker at the hospital assured us we were eligible with all our ER visits to the hospital for severe agitation......now what....ER says not to come back, facility says not to come back, Hospice says no, and MedicalDirector says "wow, you have a complex situation, go elsewhere" I feel there is no help for LB patients out there. So sad and desperate.


Mon Jul 28, 2014 10:45 pm
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Joined: Wed Jun 25, 2014 11:29 am
Posts: 51
Location: Florida
Post Re: Has anyone used Hospice for respite care?
Hospice now provides continuing care services and I was told that they are paid for by Medicare. This is provided to those in ALFs so they don't have to be transferred to a SNF when they can no longer live independently. This should probably also be available in the home. I was told by the ALF that this differs from the Hospice care we are all familiar with which brings the patient to the Hospice skilled nursing facility for end of life care.

_________________
Adele, wife and caregiver to Bill, diagnosed with LBD in January, 2014.


Tue Jul 29, 2014 5:44 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
Post Re: Has anyone used Hospice for respite care?
Some ALFs will not allow hospice to come into their facilities, just so you are aware of that. Crazy, but true. And hospice does provide services in people's homes, too. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Tue Jul 29, 2014 8:06 pm
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