It seems that suddenly many of us are at the point where we require Hospice Care. I was just curious as to home many we are. I'd love to put together a list, so that we can ask each other questions.
MY husband at 74 years is in a dementia unit and at 6/3 got down to 116 while eating. Our parish founded a freestanding hospice some years ago. We alspo did home hospice especially with the city indigent. You wouldn't believe how this is needed. Later when Ed was managing we started help to nursing homes with the hope of improving care. Now Ed is getting over lay with outr hospice.
He is still in a fine dementia subset of College Manor which we can barely afford.
I don't want to give you false information, nor do I want to overwhelm you, but here is what I can tell you. Hospice qualifications do vary from State to State. There are 22 different Hospice topics on this board. You can access the list by copying and pasting this link -http://thealzheimerspouse.com/vanillaforum/search.php?PostBackAction=Search&Keywords=hospice&Type=Topics&btnSubmit=Search
Or just write "hospice" in the search engine above, making sure the topic circle is filled in.
Generally, and this is definitely a general statement - One is eligible is they have a terminal disease (yes to AD), and if they are determined to have 6 months or less to live (Not possible to ever really know how long they have). HOWEVER, if they live past the 6 months, they are re-evaluated, and are usually granted an extension.
As for what they provide - a lot! Please check out the topic link I listed, and you will most likely learn more than you thought possible. I know I did.
We were signed into Hospice yesterday. We were with Hospice over a year and ended it last May. My husband has had a big decline and we were re-certified this week. I did ask the Hospice worker why in some states people were kept with Hospice for longer terms since after all Medicare is Medicare no matter where you live. The Hospice worker told me that Medicare has now started assembling a panel of people who go in and check the patient records at the Hospice facilities and that if the patient is re-certified when they should not be they are going to be re-claiming the payments that have made on that patient. She said a lot of facilities are going to have to pay a lot of money back.
I am thinking that it won't be long that Hospice won't be staying much longer than 6 months at one time unless there are big indications that the end is near. That is just my thought though don't take it to the bank.
My husband just started with hospice two weeks ago. He is 66 with AD. He was not admitted under a dementia diagnosis, he was admitted with a dibility diagnosis meaning his rate of decline is steep.
thank you bluedaze, it has started out rotten or either I am a rotten hard person to please. The communication break down is un-real. Hospice offered to bring a Hoyer lift if I pay for the sling, they said the sling I wanted is $124.00 and to expensive, Duh!! the sling I want comes with the lift, they had requested a sling that I specifically told them I did not want. They had ordered a second hospital bed after I had told two different people we already had one, the driver was on his way with it. The Nurse said I see he can still follow commands as I had him stand up at his wheel chair to for her to check and I gently guided him back to sit down, it is something we do daily so it was not following a command. She said she wanted to check his lungs at his back, I told her fine he would let her. She said he is resisting me, I said Noooooooooo he is not resisting you, he does not understand that you are telling him to lean forward.
They are Nuts, complete nuts, it is the same Nurse, the Same people and you would think they would know he cannot understand them. I could scream. I want to take the respite as I need it so bad and am actually afraid to entrust him to them. I must be an absolute horrible person to please.
So far I count 10 of us Currently with Hospice. Any tips from those of you who have gone this way before us? I believe we will officially be Hospice on Tuesday. The FTD Clinic in Boston was to conference call with our Neurologist today. Then at 3:00 on Monday they will call us. At that point I would imagine the referral will be sent. Meanwhile Jim had a cath put in today, urine is very dark, indicating some dehydration. He just doesn't want to drink much. Milk at meals, a bit of water with pills, and 2 cups of coffee in the am. He is so weak. I thought of Divvi today. When I told Jim that I feared he had Alz he said that he would kill himself before he would allow me to wipe his ass. Well today he called me and said he just couldn't get his bottom clean. I just casually did it for him and he never so much as blinked an eye. We have come a long way on a lousy road. I took a glass of wine out to the freezing front porch and had a good cry. I came back in and got back to work. Thanks for letting me vent and cry. Arms around,Susan
Jane-I am so sorry for the repeat nightmare. I assume you have no choice of hospices. I don't but was lucky-very lucky. Is there an ombudsperson you can contact? You surely don't need this extra grief. I doubt that you are a horrible person. You just want what is right for your husband. He is fortunate to have you. Susan-you have tried so hard to do things as your husband wished. My heart goes out to you.
Jane i agree with bluedaze, you should make some complaints if things aren't going like you need. i guess i lucked out i like ours so far and everyone seems attentative to my suggestions. i wouldnt put up with BS either. we are advocating for our spouses and if you are willing to pay the extra costs it shouldnt be any dispute to it. i told them too i wouldnt be using hospice diapers. they are horrible. i went back to buying depends or tenas// i know they are on a budget but geez they dont work a bit. susan i am sorry your DH is declining. its hard to watch. on a lighter note, its uplifting to know my name comes to mind to everyone who has poop duty. it will forever be engraved and associated with my name i do believe. i can see nobody wants to lay claim to this title. i dont mind. its cost some very very hard work and patience to get this crown.i consider it equal to stature of a PhD in waste management!! hahah...
We had clear urine for a while, now the CNA thinks it is more blood tinged from insertion rather than copper from Dehydration. I agree, as when I emptied the cath bag this AM I saw a couple small clots. He is very confused today. Happy to have our daughter here, they are a team :o) She is such a support.
Susan, We had hospice for just short of one year. they were very good to us. We have a second home where we live for six months in the summer. When we went up there last summer, the switched us to their branch up there. They were there the day we arrived with a bed, wheelchair, hoyer lift, over the bed table, bedside comode and shower bench. The only thing they didn't bring was a full railing for the bed, I told them I had to have one for both sides of the bed and they had it there before bedtime. One thing I learned was to ask for what ever I thought would make it easier for us. they had it there within a couple of days. Things were very regular down here but once we got there, the nurse would show up when ever she felt like it and the aides had no set time. I told them they had to set a day and time to be there and they did. Where we live up north, the hospice people had a 80 mile round trip to get there so the set time and day worked for both of us. Don't be afraid to ask for anything. They even brought us a wheelchair with a seat belt when I told them I needed the belt. Ask about a volunteer to come in for a few hours each week to give you a break to take care of shopping and banking. Ask about respite. That was a life saver for me.
Jane don't be too hard on yourself about wanting what you think is best for your husband. Remember no one can take care of them as well as we do/did.
Joyce, thank you so much. Tueday I expect to be "officially hospice". The CNA's and RN's who are coming out are ones who do both Home Care and Hospice. So there will be not difference in staffing. They have already given me info on all the equipment you mentioned. The are so kind and caring. This next two weeks will be tough, as my Mom has her hip replacement surgery on Wednesday, both boys are sick with fevers, earaches, sore throats and coughs (drs appt in am). I'm just trying to stay in the moment. We have the conference call with the FTD Clinic in Boston, Monday at 3pm. Then we should get the referra. Aghh, I'm tired. I agree, Remember no one can take care of them as well as we do/did.
Susan, my experience with hospice was wonderful. They provided us everything we needed. Including weekly checkins with me now that he has passed. I am going to start attending their grief support group. I miss my cna's,social worker and nurse. They became fast friends. Let them know what you need and if things don't go well,speak up.
My husband has had hospice since November of 2009, but they have informed me that since he is no longer losing weight, they may have to discharge him. He is in a nursing home.
Not a problem, since I haven't seen or heard from anyone at Hospice in weeks.
We are supposed to have monthly meetings, but haven't heard a thing since mid January.
We are still in hospice Pergatory........first we get a yes, then an no. All I know is that this is the hardest job, I have ever had. It is a labor of love, but I hate it. I want my life back. Having a tough day, adjusting to having him home from the NH, having him home from the hospital, my Mom home from having her hip replacement, having daughter home from rehab, having the boys home from school. Will Monday ever come????
Wish I could help you in some way. I'm sending you some hugs and warm thoughts! I don't know how you do it with everything on your plate. You are an awesome woman :)