G's PCP referred him for Hospice care this week, but felt he probably wouldn't qualify yet, but wanted to start the process due to his constant falling and general decline. The gal was out this morning, and he is signed up! She had to "tweak" the diagnosis a bit to qualify (FTD) as most of the requirements aim for ALZ not all the other types of dementia, so they adjust things to get the qualifiers in place. She felt it was so obvious he was in need. I am so pumped for the help. This is the type of care mentioned in another discussion..not end of life Hospice, but in home aid...bathing, meds evaluation and adjustment (and paying) and much more. I am very grateful as I'm pretty well wiped out now with little or no sleep for over a week...resulting from another fall which bruised/cracked a rib, and he is up or roaring from pain all night. YES!!!
kathi, we have a friend who is dealing with a DH with alz. She has no help, no family near by and is struggling. If you don't mind me asking, how far along in this disease before you can get help? I don't think her DH is as advanced as mine, but I have someone who comes in twice weekly, she has no one. I know she is really having a hard time. If she could get a little help I think it would be such a great thing for her. Would she need to get her husband's doctor to start paperwork?
Audrey andKathi37 I too am interested in this discussion as I too am one with no family help and DH has friends who seem less inclined to come around or even call. I dont know what I'll do as he gets worse.It would help to have some insight. My email is available too. Thanks, M
Audrey: My DH's VA doctor told me he qualifies for hospice and he would be contacting them to contact me. My DH is very functional physically, but I can't leave him alone. I will welcome any help I can get from them. My DH also has a heart condition and lung condition, but I don't know if that had anything to do with qualifying or not.
Sorry for double post...Audrey please post whatever you know and find out from the hospice on here so we all can know what they offer for those that are not in the final stages it would be so helpful. Thank you. I am adding my e-mail address so you can send me information if you don't want to post here.
My wife was put on Hospice last spring after a hospitalization for pneumonia. She is "diagnosed" as general debility, not AD, since this works better with the medicare guidelines. She has a nurse-manager check her each week, a massage therapist give her a massage every couple of weeks. I could get nurses aides to do bath, cleanup etc, but I really don't need it at this point. I do get a hospice volunteer who stays with her once a week while I go to Rotary. And, most helpful, I get 5 days respite each review period. During this time she is put in the hospital and I can take a trip somewhere - Chicago last period, Washington DC this next one. Medicare also pays for her medicines that are related to her diagnosis. Thus they pay for the immodium for her loose bowels and for her citolopram (which was just discontinued), but don't pay for her meds for diabetes or high blood pressure. Some hospices pay for supplies such as Depends, but this one doesn't. They will provide a hospital bed when we get to that point. As long as she continues to show "deterioration" she will stay on hospice. This could last for months, or even years.
Marsh has fairly well covered what happened here. The diagnosis is not specifically for AD or FTD as the guidelines are very strict, but the debility thing works within the system. I was led to believe that once your Doc refers you, Hospice will be sure the diagnosis fits.
One of my main concerns now is the bathing issue as G is 6'6" and weighs over 200#...and topples over in a heartbeat, so they will bathe him as often as needed (decide this week) and they will come and do a check as often as needed (my choice to some degree). I was given examples that I found very helpful....if a fall and blood occurs, call them BUT also get 911 to transport. Hospice will call ahead and make arrangements in the ER for the correct procedures and assure unneeded tests are not administered...cutting time in half for most cases. Meds for middle of the night emergencies (not specified) will be issued to me to be kept in refrig...now exactly what these are, I do not know. More details will come thru during the first visit in a couple of days. An entire notebook full of this type of info for me to peruse was given me. Help will increase as declines indicate the need. They do not do respite per Se, so the visits will not be a get away card, but they will be in charge during these visits.
Hope this helps somewhat. I truly had no idea this was available to us, and am very pleased with the nurse who enrolled G. Interestingly, she is very familiar with G's Docs...has worked with both of them (PCP and Cardio)...even a large city seems smaller when medical personnel work well together.
I just realized I did not answer the one question of the state of G's disease..with FTD there really are no set stages. He fluctuates daily..much confusion to very lucid moments. It's a guessing game what state he will be in moment to moment. Physically he is a mess with constant falling issues and inability to use his (formerly beautifully coordinated) body properly. His incontinence comes and goes..away at the moment (YEA). No appetite, loss of weight were also a question for qualifying...he easily fulfilled both requirements.
Please feel free to email if there are other questions I didn't address....always at the computer sometime during the day and night.
Kathi, I'm just now seeing this and I've sent you an email. Mimi and Judith, I didn't see an email address for either of you but maybe you could post one or maybe kathi would share with all of ust right here. This is something we might all need. Thanks, kathi!
I think you should post your comments in this open forum so that we all can review the info, as we all will be needing to know in the future if not now. Btw, do we pay for Hospice care? Sorry for being so dumb, I just don't know.
Does Hospice provide commode chairs? The friend I mentioned in a previous post is thinking about buying one but since she is going to contact Hospice this week, I thought she might could wait. I know their finances are not great. And along the same line, I'm thinking about buying a commode chair for my own DH. He has severe arthritis and is having some problems sitting down. Are these adjustable? I need something taller than a regular commode. I did buy a "raised commode" seat but he didn't like it, said it didn't feel "safe!" I gave it away.
Hospice will definitely pay for hard items such as a commode, beds, walkers, wheelchairs etc. This was mentioned to me right away. It has surely been an interesting few days since Hospice signed on. Saturday a social worker visited with many questions and answers...she was very nice, then Sunday morning (9:00 AM!) a nurse called to check on G's pain level and to see if he needed anything, then this morning early a Chaplin called to offer his services. Boy, they are really on it! We will be setting a weekly routine tomorrow.
Check with your medical supply house. Medicare will also pay for such things...they did in our case. I am sure that you are aware that hospice is funded by Medicare..so it's all the same. I wish Medicare sent everyone a list of items they would pay for when needed (usually need a doctor's note), because I know I bought many things out of pocket only to be told later that I could have gotten them through Medicare.
The Hospice nurse tweaked g"s meds...added another seroquel and trazondone (1st time). It is unbelievable what a difference it has made. Instead of getting up 10-12 times a night..now it is once and little thrashing. He also watched the entire US Open tennis tournament on Saturday..unheard of for 2-3 years! He is far less antsy than he has been. Yea for small wonders!