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 HOSPICE 
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Joined: Wed Nov 12, 2008 12:13 am
Posts: 18
Post HOSPICE
WHEN DOES HOSPICE COME IN TO HELP WITH PATIENT WITH LBD. NOT SURE WHAT STAGE BOB IS IN, WE DO HAVE CNA HELP ROUND THE CLOCK. SOME DAYS ARE BETTER THAN OTHERS, ON GOOD DAYS BOB CAN GO TO WORK AT OUR FAMILY BUSINESS FOR JUST A FEW HOURS. HE WAS DIAGNOSED 2002 WITH LBD, PARKINSONISM ALSO ON COUMEDIN THAT IS CHECKED ON REGULAR BASIS, DEPENDING ON LEVELS, ALSO HAS A MECHANICAL AUROTIC HEART VALVE. APPRECIATE THIS GROUP AND INPUTS. PAULINE FL.


Sun Feb 22, 2009 12:40 am
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Joined: Wed Jan 28, 2009 2:34 am
Posts: 10
Location: Boise, Idaho
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As long as they have a diagnosis that will fit the hospice requirements, he should qualify. My husband was on hospice in June of 2007 and then released to home health because they had him listed as failure to thrive. He was eating and not losing weight so they took him off hospice. This January they placed him back on hospice because of dementia. They said they did not have to list all the symptoms or diagnosis because we know that dementia will be his cause of death- one way or another.
I would contact the Hospice group and have them come out to see your husband. All they can do is tell you he doesn't qualify, but if he has LBD I think he should be covered.
Good luck. Sharon N

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Sun Feb 22, 2009 2:27 am
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Joined: Sat Jan 03, 2009 2:59 pm
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Pauline,
I found a short question and answer sheet , could help you decide:
http://www.vistacare.com/hospice/tools/ ... 5QodLl4H1A

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Irene Selak


Sun Feb 22, 2009 9:18 am
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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The typical advice is that if you are asking about hospice, it's a good time to at least talk to one hospice organization in your area and found out about when someone might be certified for it.

Having a dementia diagnosis is a certifying criteria for hospice, and not being able to perform most ADLs (activities of daily living) is another.

When you get serious about it, I encourage you to ask around to find out which hospice organizations are recommended, and interview at least two of them. If possible, include your husband in at least part of the interviews. In my opinion, it's best if the neurologist (or geriatric psychiatrist) prescribes hospice so that you can continue to work with an LBD specialist.

In my mind, hospice basically means free help for the patient and family...and why would anyone turn down free help?

I would encourage you to "spin" the several-hour outings as something you do for everyone's emotional benefit.

Robin


Sun Feb 22, 2009 6:47 pm
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Joined: Wed Nov 12, 2008 12:13 am
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THANKS SO MUCH, SHARON, IRENE AND ROBIN. FOR YOUR HELP ABOUT VISTA AND HOSPICE. I DID GO TO WEB SITE, IRENE AND WE WOULD BE MEET THE REQUIREMENTS. OUR CARDOLOGIST HAD SUGGESTED HOSPICE. SO WILL TALK THIS OVER WITH OUR DAUGHTER AND 2 SONS AS WE DO WITH ALL OUR DECISIONS ON BOB'S NEEDS. I WASN'T SURE IF HE COULD GO TO THE BUSINESS AS HE DOES WHEN HE CAN, THAT IS ONE THING THAT KEEPS HIM GOING. I JUST PRAY AND I APPRECIATE FOR THE OPPORTUNITY TO CONTACT SUCH GREAT FOLKS THAT TAKE THE TIME TO BE AVAILABLE ON THIS WEB SITE. LOVE PAULINE


Mon Feb 23, 2009 11:02 pm
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Joined: Fri Feb 29, 2008 7:02 am
Posts: 537
Location: MI
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I'm glad you're able to take Bob to work sometimes- I do agree its helping him keep going- even if you have to hunt for useful work for him. people do better when they feel useful. I've seen some of Mother's friends go into nursing homes and watched them decline in part because they feel worthless
Sharon

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syt


Tue Feb 24, 2009 7:07 am
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Joined: Fri Jun 05, 2009 4:15 pm
Posts: 82
Location: Onsted MI
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I'm wondering exactly what hospice does??. I always think of them coming when the patient is on the death bed. Maybe my LO qualifies. He is pretty needy. He still walks and can get up and down stairs. He can feed himself most of the time. (needing more help with this tho) He has started drulling recently. He can't dress himself go to the bathroom alone and is incontinent most of the time especially when sleeping and he sleeps a lot. He needs help getting up and down but only uses a cane to walk once up. He can't write and sometimes he looks like he is reading but I'm not sure. I don't understand most of what he says as the Lewy bodies are taking over his brain - he was a university professor and it has been a long sad journey. He can still hug me...that's important. My faith is my strength.

Do you think he qualifies....for hospice that is??


Sat Aug 01, 2009 10:38 pm
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Joined: Sat Jan 03, 2009 2:59 pm
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jweeks,
Each state has a different set of guideline,but it can't hurt to ask his Doctor about making a request for them, the worst that could happen is he does meet their guidelines at this time but when he does need he will already be in the system, They have to have a terminal illess which he does, often just had an infection, or bed sores, weight loss, here is a link that might answer your questions better!

http://www.hospicenet.org/html/faq.html

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Irene Selak


Sat Aug 01, 2009 10:54 pm
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Joined: Wed Jan 28, 2009 2:34 am
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Location: Boise, Idaho
Post Hospice
For my husband, hospice provides a nurse twice a week and a CNA who comes to bathe him and doctor his back everyday except Sunday. They also have a social worker who checks to see if she can assist in finding groups or information for me. At one time we had a physical therapist working with him. An occupational therapist can also be available but depending on his mobility they may decide he is not ready for hospice. They also have a chaplain available and will arrange for a volunteer for respite time for the caregiver.

My husband has been bedridden for two years and has a catheter so that is the reason the nurse was needed when he was in home health. The diagnosis of dementia and inability to get to a doctor also qualify him.

They told me they can offer more assistance in hospice than they can in home health. It is worthwhile looking into the groups available for you.
Sharon N

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Sun Aug 02, 2009 1:02 am
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Joined: Thu Jul 03, 2008 11:05 am
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Location: Raleigh, NC
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Your question was timely for me, too, Pauline, and I appreciate the responses.

The nurses at my mother's AL facility raised the issue of Hospice this past week, saying it would provide an extra set of eyes on Mom. I suppose I'm not being very generous, but I got the feeling they just didn't want to deal with my questions.

While she's totally dependent for activities of daily living, Mother eats well as long as she's fed, doesn't complain about pain at all (not even the osteoporosis pain of old, so that bothers me a bit), and doesn't have any other major issues. We haven't had a crisis, not even a UTI, for the past year.

I did talk with a hospice representative from the local nonprofit group that is generally considered the best. I don't get the feeling that for us, now, it would add that much benefit. If she were still at home or if we could schedule hospice visits around particular schedules at the AL facility, I might feel differently. I also know that Mother doesn't respond well to anyone she's not familiar with so I don't know how much good it could do.

I'll also say that I didn't come away from my visit feeling as good about hospice as when I went in. It felt like a sales job. But it's possible I had such defenses up to keep from breaking down completely that I didn't give it a fair hearing.

And while Medicare and supplemental insurance will cover hospice and I'll be glad to take advantage of that if it is truly needed and beneficial, I also know that being "covered" and "free" are entirely different so I want to make sure I make the right decision.

Someday, maybe LBD will present me with an easy decision to make. So far, that hasn't happened. Reading all of your stories (on this and other questions), however, does help me weigh pros and cons so once more, I thank you you all.

Garnet


Sun Aug 02, 2009 12:00 pm
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Joined: Sat Jan 03, 2009 2:59 pm
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Garnet,
Some of the reason you came away thinking it was a pitch is you are probebly not ready for hospice, when the time comes I believe you will feel differently, I have heard more good than bad with hospice all over the country and they are different from state to state, I have heard that hospice starves a person and I know for a fact that is not true but they do let the patient make the decision and more than likely when that person stops eating which is normal in the dying phases they were going to even if hospice was not at all involved! We had hospice care for 8 months and I couldn't say anything bad about them and as far as the cost , there were none, they even covered an emergency room visit when we moved 4 weeks prior to my husband's death they even paid for the transportation 60 miles away and helped me get set up with a new hospice in that area and he was never without coverage for a moment. The aides were the best most caring people I have ever met and most of all they always kept my husband's dignity in mind.

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Irene Selak


Sun Aug 02, 2009 12:13 pm
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Joined: Thu Jul 03, 2008 11:05 am
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Location: Raleigh, NC
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Thank you, Irene. I know hospice as a whole is a wonderful organization/movement. It was a godsend for several relatives and friends.

While my defensiveness was probably part of the problem with this meeting, there could also be a difference between the representative they have making those first contacts and the caregivers themselves. But when the time is right, I will talk with them again.

Garnet


Mon Aug 03, 2009 6:31 pm
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Joined: Fri May 22, 2009 1:04 pm
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Location: Chapel Hill, NC
Post Helpless but not ready for hospice
My question is, what do you do when your LO is severely disabled and needs help with everything, yet is still too healthy for hospice? Any kind of home care that is not medical in nature, you must pay for yourself. We have my husband's small actor's union pension and Social Security, and I am employed as an editor about 2/3 time at home for $30 an hour (though in today's economy that may end), so we have a decent income, but 2/5 of it goes to a debt management program to pay off credit card debt incurred when he was getting sick and I was not working regularly. That has another year to go.

Home health care at between $15 and $20 an hour adds up incredibly fast. I don't take time for myself because I am so aware that if I go to dinner, a movie, or even for a walk it will cost an additional $50 minimum. I pay $200 a month for weekly strength training for my husband and quite a lot for incontinence supplies and drink thickeners. (He is very fortunate in having a union drug program so we pay only copays and deductibles for meds.)

My husband cannot walk at all and can usually barely stand with the walker and help from bedside to have his pants pulled up. He can rarely even turn over or sit up in bed without assistance. He's a big guy, 6'3" and probably close to 300 lbs. I am a foot shorter and weigh about 115, strong, healthy, karate trained, I dress him, wash him, get him up and into his wheelchair with a Hoyer lift. However, medically he's in good shape for an 81-year-old. He has nice low blood pressure (as do I, thank God -- I'm 63), no heart disease, no diabetes. The tendency to get aspiration pneumonia is under control with Thick-it and Nexium, and rarely, antibiotics. He definitely has more than 6 months to live! Possibly years yet. So there's no way we qualify for hospice -- and no way to get the heavy-duty help I need except to pay for it.

Any suggestions?!


Sat Aug 08, 2009 11:47 pm
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Joined: Sat Mar 28, 2009 6:01 pm
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I don't know that much about hospice requirements. But I can tell you that medicare will pay for incontinence supplies if your doctor prescribes them. My husband uses a condom catheter, and every month I receive a set of 30 condoms, 2 nighttime catheter bags, and 2 small daytime leg bags. Have your doctor write a prescription, or authorize the company that will send you the supplies. This amounts to a considerable savings. Of course the special underwear he uses is not covered.


Sun Aug 09, 2009 12:47 am
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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Annie,

I would speak with your husband's MD to see if your husband could qualify for hospice. You never know...

Have you talked to the area agency on aging about a grant?

How about religious organizations about volunteer aides?

Robin


Sun Aug 09, 2009 12:55 am
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