MY LO is in a group home for about 2 months now. She went in still talking a bit, but probably stage 6. This past weekend they have asked our family to apply for hospice for her. She will not eat anything substantial anymore. She goes 3-5 days at a time without sleep. She has lost so much weight she is like a walking skeleton. (I do NOT believe for a second the home is hurting her. It is a good home, and they are always working to help her.)
Does this sound like the end for her? I know that is such a silly question, you can't know about her in two sentences. But I am so scared that she went down this fast. Did she go down because I put her in the home? It's almost like she lost the will to live. But it was killing me to keep her. For four years, I tried. I kept her, but we both suffered. I never got a full night's sleep, and couldn't give her baths or meds without a fight. So I gave up.
Can anyone give me a quick run down of how they used Hospice/ I really don't know much about it besides the basics. If she has hospice, should I bring her back to my home?
I also am wanting this information along with the question of if the loved one cannot sign the contract for hospice will they allow you to use your Durable Power Of Attorney to sign or how will this work?
My husband entered Hospice care about six weeks ago. His was more because of terminal cancer. But the way it worked for us is the doctor contacted the Hospice group of our choice and they came out to talk with us. I am the conservator for my husband but don't recall much paperwork and I never had to show proof I was his conservator. I'm retired and I take care of him at home. Hospice supplies any meds needed for comfort. The nurse comes out once a week to check on him but that will increase as his health declines. When needed, aides will come out three times a week to bathe him and change the bedding. My husband is now eligible to stay at Hospice House for up to a week at a time to give me respite. Also, if we choose, he can go to Hospice House to die. Hospice groups that don't have a Hospice House have rooms available at a hospital or nursing home. In your case, with your loved one so sick, you may choose to place her at Hospice House rather than bringing her home. And don't feel guilty about her decline. Once they reach the stage she is in, a quick decline is a blessing. However, we never know. I have a friend whose mother lay in a fetal position for a year. The only thing she did was to eat a little baby food and take sips of water.
I used Hospice when my former spouse died of cancer. Before that we had Home Health come and he had to sign something that said he didn't drive to be eligible. He balked at that, though he was way too ill to drive and hadn't been driving for a while. We told him as soon as he didn't need the service he could drive again, so he signed- though of course he was dying. Now, I certainly don't have conservatorship and haven't thought about needing it. I wonder when would be the time to set that up?
I'm sorry I did the conservatorship. I has caused more problems than it's solved. I did it because I needed to change banks and his retirement people would not change without my being designated guardian/conservator. They said my POA would not work because he was already diagnosed with dementia when he signed. The only other time I needed it was last year when I was doing taxes. I could not get the medical financial info without conservatorship or without his showing his ID and he had hidden his wallet and ID.
Now I feel as if I'm not sure what one should do. I do have POA - I'd have to look to see if he was diagnosed with AD then, but I'm pretty sure he was. One more thing to see about I guess.
I have mentioned previously, my mother also had AD, 20 years of it. Towards the end we agreed fro them to do palliative care only, so no heroics, but they would give antibiotics, for example, if she got the flu. It kept her comfortable without my feeling like I was giving up. She still lived several more years like that, by the way. She enjoyed a couple of things until the end, like the smell of a good perfume (always the lady) and a kitten on her lap, and my granddaughter visited her and she smiled,quite ulnusual at the stage she was in, but it was clearly a smile, only a month or so before she died. So I think, even with minimal intervention, what we call care, a person can be cared for in impactful ways. And, I almost forgot, at her NH, a wonderful woman would come and sing her favorite songs, and I had a cd player that aides put on for her, mostly her all time favorite, Frank Sinatra!
So, I think, even if it is not medical care, it is still caring and loving and sometimes that gets through more.
This seems like a good group to share this story. I used to go once a month and sing old favorites at a NH. One time I was singing and one of the residents was masturbating like crazy. At least I knew I made someone happy that day!
Sandi, Did you sign as POA or just sign his name?? Also when you came off Hospice, was there any problem with Medicare knowing to pay Doctor bills since you no longer had Hospice? Did you have any problem with the payment?
Jane, the nurse just said to sign his name....this was our second "dance" with hospice, and I had no problems either time. This time he was only under hospice care for 19 days so I didn't see any of the paperwork from Medicare. But, I never owed a dime from his other time he spent under them.
My husband quit sleeping, and barely ate anything, and couldn't remember how to drink fluids three weeks before he passed. I was told when the AD reaches the brain stem then the brain forgets how to use the nutrients and fluids and that is why he lost so much weight at the end, he was loosing weight even before he quit eating, so the calories weren't counting for anything. After that he was only with us for three weeks. Hospice treated my husband and myself and son very well, offering any kind of help we needed. He had hospice at Hospice House.
Regarding a LO signing a POA after diagnosis--we redid all of our legal documents after the diagnosis. Our attorney talked to my DH to be confident that he understood what he was signing and that it was what he wanted. If someone refused to accept his POA because it came after diagnosis, I would refer them to my attorney. I am sure that she would be perfectly willing to explain to someone that it was a valid POA. (Don't most people draw up documents after diagnosis? That's what they always tell us in meetings--to make sure that we get our documents in order as soon as possible. But by then it's always after the diagnosis.)
When our bank refused to accept my husband's POA, I sat in the bank manager's office while he called the bank's own legal department--who told him exactly the same thing I had been telling him. Sometimes they just don't know, and don't bother to check with anybody. And it's easier for them to just say "no".
Being diagnosed with dementia is not the same thing as being declared incompetent.
And even after someone is incompetent, that doesn't mean that the person is unable to express his/her wishes, and that those wishes could and should be honored.
Plus, you don't have to mention that the legal documents were drawn up after the diagnosis...
I haven't been here for a long time, but the hospice title got my attention. I signed my husband up for hospice the 18th of March. I do have DPOA for him and I just signed my own name. No question, no problem. He has a nurse once a week or more if needed.. I've had the nurse out three times this week. An aide comes three times a week an bathes, dresses, shaves, cleans his teenth and will clean his room if needed. The social worker was right there and has got a 5 day respite care set up starting on Monday. I have also had a volunteer out twice a week for 3 hours each so I can get out. They have switched his hospital bed two times. The first was switching it from the one home health care provided with one from hospice. Then the switched that on with what the called a low boy bed. It is the same as the hospital bed except it lowers to the floor so when he tries to get up during the night he doesn't have far to fall. They also brought a mat to put next to the bed for him to fall onto. All meds are furnished along with incontinent supplies, diapers, depends, wipes and gloves. Right now they are suppling meds for a UTI.
All I can say is don't wait to contact hospice thinking your LO isn't "that far along or that bad". It doesn't cost you anything to see if he or she qualifies and it is a big help. They did tell me that most people tend to wait way longer than they have to before getting hospice.
The Home Health nurse that visited yesterday felt my DH would qualify for Hospice. Today the Hospice nurse came out to do an evaluation, they called the doctor, and now he is being served by them. It is such a relief! Hank seems more comfortable now even though little has changed in a few hours - maybe my feeling of relief. We are already making changes in drugs to address the issues she saw when she was here and she will come back tomorrow. I am so relieved that we can stay right in Oregon where we have friends and connections. Now no one cares what is causing the decline, we are only going to make Hank comfortable. There are a few papers to sign, but it is easy. Suzanne said they even come out and give massage - to the patient, of course!
trisinger-you know that this disease is relentless and terminal. You put your dear wife in a wonderful home where people won't be too exhausted to care for her. Hospice will be wonderful. They know how to keep your wife as comfortable as possible. Please be at peace with yourself.
Well, an update since then, wow, end of March, seems so long ago.
She did go downhill, down to 72 pounds. But I started taking her fruit, and she's been holding at 76 for some time now. Her Hospice person is just wonderful, and I have such happiness in my heart that there is someone who checks over her every week. And he comes out when she falls, and any time the home needs him to look after her. Hospice was the best thing I ever did.
The Hospice nurse was here quite a while this morning. I was shocked that she thought I should tell Hank's family if they wanted to say good-bye they should plan to do that within a month. She left a little booklet intitled, "Gone From My Sight" which describes things to expect one to three months prior to death, one to two weeks, days or hours, minutes. It is very good - but so sad. It is just better to know and be prepared. In my mind I thought we probably had two or three months, but things have been rapidly going downhill since the Urgent Care visit 7/9. When you get to this place I so hope you have Hospice to help out.
Frand, once things take a turn on the downslide, it does sometimes come quicker than expected. We will be here for you whenever-so very sorry Frand, its not going to be easy for any of us -divvi
Frand, my heart goes out to you. I'm glad you have Hospice. I would have a hard time without them. I don't have Hospice homes or whatever where I'm at in Michigan. Knowing that they will be here for me when I need them is a comfort. I was shocked when his neurologist told me to put him in a home. His GP of many years is head of Hospice in our area and signed him up immediately. I know it wont be long for my LO, so I know (Kinda) what you are going through. As divvi put it, your situation isn't easy for us and please know you are in all of our thoughts and prayers...
((Frand)) I too didn't realize how bad Hank's decline was, I am so very sorry you are facing this. I am glad you have hospice to help you through. Please know that my thoughts and prayers and with you and Hank, and your whole family. ~Nikki
Thank you everyone. This has been so difficult and exhausting. For some reason Hank paced from 3 PM yesterday until 2 AM. He just couldn't settle down though we gave so many drugs to change that. He shouldn't even be trying to walk now, and would constantly fall if I didn't have a hold on him. He really isn't eating - where does that drive come from? We are on to haldol now, so he is zonked out. I dread when he wakes this time. No one would be surprised if he died within a week or sooner, and I will be very, very sad if he can not die peacefully.