Well, Dr. Kaufer promptly referred my husband to hospice (in good part I think to prevent me from breaking down), and Duke Hospice came to do intake -- they seem to have assumed he was going in and didn't do a huge amount of obvious evaluation -- it was "shoot first and ask questions later," again I think as an intervention for me. Which is not so say that it won't be better for J, too, to have visitors and be fussed over and kept cleaner (not that I was doing a bad job, but a kind of ragged job). Most of all better for him if I last longer.

The main features of it at this point are free incontinence suppolies (!!!) and two strong ladies who bathe him, change the bed, and will help me get him up if the timing's good. They come three times a week. The simple fact that I am not doing ALL the heavy lifting has made my shoulders noticeably less sore in less than a week. (I've had what probably is rotator cuff tendinitis.)

Then there's a nurse, a great gal, who will come periodically to check him out. A social worker who began talking about DNR orders in front of him without knowing anything about him, and then said she was here to deal with the emotional side of things!! A chaplain who also felt somewhat superfluous when he saw that my husband was neither particularly religious nor on his deathbed. The latter two gave me the feeling that we'll probably be kicked off hospice after a while because he's relatively stable. But who knows? Even if it's on-again, off-again, I will thrive on the help and rest when it's on and "store fat for leaner times."

Again, I want to THANK YOU all -- I probably would not have even investigated this option if not for your urging. I thought I might fall apart with relief but it has been quite the opposite -- I've had a resurgence of energy. My organism seems to have become very opportunistic and resilient, which I am glad to discover.

I'll keep you posted!

As I said, Bless Hospice & you & your DH as well. You can hear the relief in your voice. It's so nice to hear something good. Glad you're feeling better. Dee

Amba - I'm so glad you've gotten some much needed help!!! Sometimes, folks (even those 'in the know') don't think before they speak. I'm sure that's the case with the social worker and the chaplain.
I am headed off to join up at Costco so I can stock up on Depends...I'll be thinking of you - and praying I can get some $$$ help in that department soon

Bev, it was when the intake nurse went to her car, came back w/3 bags of incontinence supplies, and said "Here, you won't have to pay for these anymore" that I almost fainted!

The best to you. We are all in a "gray area" (very gray, sometimes) where there is so much help needed and so little available. Covering it with hospice feels like an experiment -- and a bit of an "off-label use."

Glad you will have the help for hospice for at least awhile...

Glad that Dr Kaufer has asked Hospice in on your husband's case, their help is wonderful and just the fact that you can call them 24/7 to me made a world of difference and even if he does get kicked off, he stays in their system and when the need arises again and it will you won't have to go through all this again!

Congratulations! Just got Jerome enrolled for hospice this weekend and can't even imagine how it might make a difference for me. I think that hospice folk are very deliberate about making sure that ALL parties -- especially the patient, even if they are not fully aware of the seriousness of their situation -- are clear about this being end-of-life care, so no punches are pulled ... even if the care continues for more than six months. Can hear the relief in your "voice" and am so glad you reached out and got the help.

Congratulations likewise, though it is bittersweet. The end of isolation is the greatest relief.

Hello Amba, Your post re: hospice was very interesting, We have hospice for several weeks and they are great and yes helping with supplies is a very good thing. My husband Bob has had LBD since 2002, at first he wasn't too restricted but as time went on his life became very complicated. He isn't able to walk and needs help all his needs. Our hospice nurse comes once a week to check medical needs and one to shower or bathe 2 times a week and yes they help with supplies and meds. We have round the clock CNAs, I couldn't do with out them. We have 3 adult children and they are very supportive. Our daughter takes care of all details, like the CNAs etc. Which is a very big help, as I know you do at times it all gets to be quite overwhelming. I did sign the DNR also, not an easy thing to do. Good to hear from others who are living with this LBD Lifestyle! Pauline[/b]

Your situation sounds very similar to ours. A nurse comes about once a week and keeps in touch more often than that. CNAs come and bathe my husband three times a week. I had been taking care of him almost completely by myself, and he's a big guy and incontinent. It is a total blessing.

I am very grateful.

Pauline...
since 2002.
Oh my! You are a saint. I hope all goes well.

Hospice is wonderful! Allow them to help you, too - the experience can be very liberating. My mom was just re-certified for another 6 mos of hospice, and they have been a life-saver for me.

Renata, what a shock to come back here after a time and find Jerome gone. I am so sorry. And Dianne's John, too. I had been reading the ShyDrager/MSA group's e-mails and the deaths there have been relentless, like a drumbeat. Somehow I thought of LBD as just sort of going on forever by comparison.

Honor to each of you for going with him as far as you could go. I hope that the memories of the time before come back (they can become as distant as the shore when you're lost far at sea) and with them, the conviction that he is now that whole again.

As our first evaluation time for hospice approached, the nurse warned me that we might not qualify to continue, since J (since starting Namenda especially) was communicating and eating and more present, if no less confused. But then the doctor came and asked me some questions about the progression of his disease and her conclusion was that he does qualify, at least for now.

Just having two CNAs come three times a week to bathe and dress him and (if we want) help me get him up and into the wheelchair has made an enormous difference to my fatigue, pain (rotator cuff tendinitis), and panic. We feel much less alone. A once-a-week volunteer was chosen for us who has proven to be an extraordinary match for my husband -- almost the same age (80-81), married to a woman almost my age (62-63), world traveled and multilingual. He's Swedish but can speak fluent German with my husband as well as English. He quickly became a friend.

Most importantly, though, in the early morning hours of Oct. 22 we were awakened by pounding and shouting -- our building was on fire! It was a very bad fire, but thanks to the college girl who woke everyone so forcefully, everyone got out, including pets. It was only sheer dumb luck that put us far enough from the center of the fire so that I had time to get my husband up with the Hoyer lift and into his wheelchair, which simply can't be done very fast. You can see pictures here:

http://amba12.wordpress.com/2009/10/24/js-star-turn/

The nurse and social worker from hospice came later in the morning to see if we were all right, and they were able to take J into their facility for two nights until we were given a temporary apartment to stay in until an accessible one (right next door) opens up late next month. If we hadn't had hospice, we'd have been dead ducks -- in a Red Cross-provided motel room where we very likely would have had trouble getting the Hoyer lift's legs under the bed, if we could do it at all.

Now we're camping with the hospital bed in the living room of this too-small apartment and storing our stuff (most of which survived the fire, unlike that of several tenants) in the bedroom. My husband has been quite knocked down by the whole experience and has been sleeping more than usual. He has also lost the last scrap of the ability to stand up (leaning on the walker, with me giving him a huge boost from behind) to get his pants pulled up. I don't know if we'll get that back.

The hospice facility, as great as it is, was like a nursing home experience for him, and the way he deteriorated in those two days confirmed my determination to keep him at home.

Dear amba --
Does the name "Job" sound familiar??!! Woman, you must have enormous strength to have gone through and to deal with all that you face daily. You are amazing!!! Glad hospice was able to offer help. Will keep you in my prayers. Anything that we can do for you??

Good heavens! Using a Hoyer lift in the midst of a fire! That's definitely grace under pressure.