I have been mostly lurking since I found this site about 3 months ago, but have occassionally jumped into a discussion. Husband is 84 I am 68. Hen't is a retired Research Engineer and I am a retired budget analyst. We are in GA. and have been for past 22 years. I think he had symptoms for years (didn't even think of alz), but he had a total change of personallity. Mean as a snake, verbally, no physical. Finally started noticing things that yelled alz in early 2000's. Diagnosed March 2003. I think he is stage 6. That brings everyone up to speed on us I think. My question is when do you get hospice in and what do they do early on? Oh, by the way we have 4 indoor cats, 2 outdoor and 2 horses!
TheQueen=how did you get your name? In different areas of the country some Hospices promote palliative care while others end of life only. Your doctor can write for a hospice referral and they will do the eval. Our area has a program called Bridge. It is a gap where they keep watch but you don't have to turn over MC benefits yet. Glad to have more cat people here.
I belong to an organization called Daughters of the Nile and the presiding officer is Her Majesty the Queen. My now son in law was introduced to my family and my daughter (yes his dad and I dreamed this one up) the night I was installed as Queen., Big elaborate event. He has called me the Queen ever since. Daughters of the Nile is a ladies fraternal organization which helps to support the Shrine Hospitals for Crippled and Burned Children. Nationally the Nile donates about $1.5M per year. What are MC benefits?>
Sorry-we do get cought up in alphabet soup-Medicare is MC Medicaid is MA. MC befits go to hospice so you have to be careful as once on Hospice therapies will probably be denied as ill active treatment. Just ask us as you go
My husband has been in a care home since Dec, 2007. Hospice has been on board since January. I really do not know what I would have done without them. My husband is now in stage 7 and cannot walk or barely speak. I would not be able to get him to a doctor. They are my angels. A nurse comes twice a week and an aid comes to help with his shower. Yesterday, we had a meeting with the doctor and his staff to access his condition, as he has been having some anger problems. Things are going better, as we think he had a UTI and we had tried to get him off of Seroqual. Changing his meds just did not work. My advice, Queen, is to check with Hospice services where you live (I live in Colorado) and see what services they will provide for you now. They have been such a help for us and his caregivers. Medicare does pay for this care. I have only one deaf dog!!
Hello Queen, I am in Michigan and my LO is in Hospice. He is Stage 6 w/many symptoms of 7. LO's PCP is head of the Hospice program for the hospital where he is affilliated. When Bob (LO) went in for Dr visit in early June. Dr. recommended Hospice. If I should put in a NH I think I would have to put him on Medicaid and therefore no more Hospice. Currently a Hospice nurse comes every 2 weeks, take his vital signs. she is never in hurry and talks to me about anything that may have happened in last 2 weeks. There are volunteers who will come and stay with him while i get some respite. They are will and have provided some health aids such as walker, bed pads, bathtub chair, portable potty chairs, hospital beds canes, crutches, etc. I have needed a volunteer once, and have just started having an aid in to help bathe and shave him. As the AD progresses Hospice will provide more visits and aid. They also have volunteer clergy who will provide whatever they can in the area of their expertise. MC, i'm reading as Medicare. It is my understanding that Medicare pays for everything. The nurses, etc tell me they have a meeting every Tues A,M, and discuss at least half of all their patients each week. Therefore they discuss Bob at least once (cont)
(continuation) every two weeks. I am very satisfied with everyone who is connected with this particular Hospice program. They did insist that Bob be put in DNR mode. His meds for BP were discontinued, but I have checked his BP and if it should rise the med would be reinstated. All other meds have been discontinued. Besides AD meds exelon & namenda, he was on plavix, a statin, & a NSIAD. They will, if need be, treat him for pain and discomfort. He has had neither. It was my choice to discontinue the AD meds. His nurse didn't tell me to do so, but said it was what she would have done, when I told her I stopped the meds. The actual decision to put your LO in hospice is up to you. Of course, if he don't qualify, its a moot question. Hope this helps you. You can always check in your state and see what the Hospice programs consist of there. You will be in my thoughts and prayers, as are all the others who participate here. As brought to the forefront this past weekend, others worldwide have also been heavily on my mind too. love..
Dr. recommended Hospice or NH for my Mother last year, while she was still on a walker. She was 93. They came until her passing at 6 months. We are in WV and the plan here was I could do what I wanted with her meds. They provided ativan and something else for relaxation (can't remember). Her diag from her Dr. listed "old age decline" so they did not provide BP or heart medication. A Nurse came twice a week. I told them I didn't think it necessary that often but they said that was their routine. A bath aide was available from 1 to 7 days a week. I started with 3 times, and soon upped it to 5 because it was so great. She got her up, bathed, dressed and in her chair for breakfast, changed the sheets as I wanted them and even put the dirty ones in the washer. The aide also checked her BP if she thought she needed it, and told the office is she thought a nurse should come out. I did not ask for company visits. A Social Worker and and a Chaplain came once a month. The Chaplain also visited at the Funeral Home.
She left their 24 hour phone number and I was to call them instead of Dr. or 911. When she passed quietly in her sleep one morning I called them and a Nurse came out and pronounced her dead, called the Funeral Home and the Medical Supply to pick up the rental equipment. They told me if she needed in a NH they would follow her there, but we did not need to do that. They provided a bed tray, wheelchair, hospital bed. I had the rest we needed.
I can't say enough about the program. We were completly satisfied with their help, and I did not have to pay them anything. I did have to continue buying the meds they did not provide.
Leelyle, This is for you: If I should put in a NH I think I would have to put him on Medicaid and therefore no more Hospice
You will still be able to use Hospice even if you have to place your husband and go on Medicaid. It makes no difference if you are on Medicaid as far as Hospice use. You would want to make sure you choose a NH that allows Hospice. Most of them do.
Jane, right you are. I asked a social worker who came yesterday. She said, yes, they do have some patients in NH's. She mentioned the NH's closest to us. The only thing not allowed is double dipping and since NH's aren't paid by medicare, it's ok. If, and its not going to happen in our case, they should have a hospice patient who hospice is being reimbursed by Medicaid and that patient should happen to go into a NH being reimbursed by Medicaid, they (hospice) would have to discontinue their services. She did mention they rarely are reimbursed by medicaid in this area..
The whole idea of hospice at home surprised me. I grew up looking at one of the first hospice houses in the country, and possibly in the world out my kitchen window in the Bronx. If you can belive hospice in New York City in the 1940s. Actually I think that building was built in the 20s or 30s in what was farm land at that point in time, and the neighborhood grew up around it.
My sister-in-law died in their care in the middle 80s. And they are still around. Found their web page recently.
It is possible that if you have someone on hospice who needs to be put into a "nursing home" where they actually belong is the hospice house.
I never heard of a Hospice house until I saw it on ths site. I have known several people who had hospice coming into their home during the final months/days. It used to be a person had to be terminal within a time limit, say 6 months? a year? Now one must be terminal and I haven't asked but I think the time limit isn't so short. I will ask next time I see the social worker. They will put Bob in a home, or if no room available, the hospital for up to 5 days for my respite.
LeeLyle quote:The only thing not allowed is double dipping and since NH's aren't paid by medicare, it's ok. If, and its not going to happen in our case, they should have a hospice patient who hospice is being reimbursed by Medicaid and that patient should happen to go into a NH being reimbursed by Medicaid, they (hospice) would have to discontinue their services. She did mention they rarely are reimbursed by medicaid
If you are receiving Medicaid and in a Nursing Home and then go to Hospice, you are allowed to do this, and also keep the Medicaid. Hospice is a comfort care program and it is not considered double dipping. Your Social Worker is incorrect.
Also LeeLyle, never say never, in some situations no matter how much you try to keep the Alzheimer patient at home, even with Hospice you will not be able to care for them. Some of the patients will become agressive and combative in the last stages. You are now in stage 6 touching some of stage 7, it usually gets much worse. That is not to say it cannot be done (keeping them at home.) That is what I am doing, but even though I have Hospice with my husband who is now in the later stages of 7 it gets harder as the stages progress.
We do have what they call a Hospice house in our State, but with this you are only allowed the respite care 1 week per month and also even in the end stages you are only allowed days, not weeks or months.
I wish you the very best on this home journey you are taking with Hospice and your dear husband. That is the same situation I am now in, except much later in the disease process. If I can ever be of help please ask.
My husband is in a dementia facility with Hospice taking over his Medicare benfits. They supply most everything needed. Of course the rent is on me with the help of LTC. Hospice will stay with him to the end so I will never have to move him to a nursing home. Hospice even provides an aide for bathing which supplements what the ALF does. If everything is so wonderful why do I feel so miserable.
Jane, What she was saying is that in rare cases hospice is paid by medicaid. If that same case was in a NH paid by medicaid, then they would not be able to support that patient. She said it had never happened in any case in our hospice group. This hospice group has 1 NH they use as a hospice "house" and like yours, can only be used 1 week per month. The weeks changes each month and if a room is needed during one of the other weeks, there is a designated bed available at the local hospital. None of stages are easy and it is getting harder emotionally and physically. He has stopped wanting to eat and is 6' and weighs about 115-120. I dont know where he gets strength to shuffle about, but shuffle he does, and of course incontinence. He has never shown any signs of violence. Please! please! Don't suggest that. Just joking. From what I read on this site, violence can be handled with meds. I hope it doesn't happen, but his PCP has told me to call immediately if it should. I wish you love and thank you!
I have a friend in Ohio who's daughter passed on September 19...she had Hospice and according to my friend there are two kinds of Hospice. Non-Profit and for Profit, the for Profit was considered double dipping and Medicaid decided to reduce what they paid them which now hurts the Non-Profit.
LeeLyle: I was responding to your post Quote: I would have to put him on Medicaid and therefore no more Hospice.
When I posted I was trying to let you know that if your husband is receiving Medicare (I thought that he was, as he is on Hospice now, AND you indicated that if he went to a facility he would be on Medicaid at that point and loose Hospice. Hospice is being paid by Medicare in your situation and if he went into a NH on Medicaid, the Medicare would still be paying Hospice for him, therefore you would not loose Hospice. That is all I was trying to say.
I did not want you to think you would loose Hospice just because he went into a NH.
In July of this year Medicare started collecting more information from Hospice regarding visits to the patients that they see, Hospice is being required to submit the number of visits that certain staff make and calculate a charge for each visit.. The Medicare Hospice Benefit has not been revised since 1983. I look for big changes in the way Hospice is paid.
No LeeLyle I am not suggesting that he will become violent, only 10% of Alzheimer patients become violent. My husband is not combatative or violent but at times will become very difficult when the hygine part is being done. Sometimes a person can need more care than a person at home can give. Lets both just pray that does not happen in our situation.
I asked the ALZ office about duration of hospice care and she said that you have to get recertified every 6 months but that there is no outer limit to how many months you can get hospice care, that most people wait to long to ask to have their patient evaluated.
The first time you receive Hospice care you will have a recertification period in 6 months, then each 60 days thereafter. The 6 months period is only once in a life time. If you go off Hospice after having only three months and then go back on you will take up where you left off in the recertificatioon period.
You receive recertification as long as decline can be documented from the last recert. If no decline from one recert to the next recert then you go off Hospice, if you return after further decline and have already used your 6 months recert then you will start with a 60 day recert.
OK now I"M really confused??? I thought I knew wahat Hospice is until recently. I was told you could have LO on hospice for the 6 month peroid and that alone. Now I'm hearing it is best to call them in earlier?? We have been asked to call them in inthe next couple of weeks. This is very hard for me to do. I'm not sure I'm ready for this.He has AD and COPD . as of late he hasn't eaten only wants to sleep he only 64 and just hard!!!
nanappa-Hospice isn't just for end of life issues. They do palliative care for those with a terminal illness-like dementia. My husband will be under their care until the end. As far as recerts look at it this way. Hospice is a business like anything else. Without clients they would not exist. They want to recert. Yes-it is hard.
thank you ,bluedaze in away this is site has been a lifeline for me I'm totally illerate when it comes to the computer and over this last month trying hard to catch up. I went on line yesterday to find out more about Hospice and of course I'm not going to turn down any help. the more I know the better advocate for my husband I'll be .
If he has stopped eating, and he is sleeping most of the time, you need to get hospice in now. He is much further along than you think he is. At one time you could only have hospice for 7 days, so no one called them in at the right time. Especially with dementia, you need the help now.
nanapapa, Bob has COPD as well, but it wasn't/isn't? too bad. He also sleeps a lot and has no appetite and won't eat but a few bites. I have stopped treating him with nebulizer as he didn't seem to need it, his breathing being much improved. His PCP said, he doesn't need the treatments because he isn't moving around as much, or as energetically. Sounds like you should call in hospice now. If he doesn't meet their criteria now, try again in the future. You need the help too.
Jane, Just realized I didn't respond to the one post. I wasn't very clear about no hospice if in a NH. My thoughts were and are that I would not be seeing them on the same level I am now. I don't want to put Bob in NH as I don't see myself going to visit him and staying with him like I know other people do with their LO's. I would feel too guilty. This way I can see, touch, and be with him all I want. I am willing to take the bitter with the sweet. I hope and pray I can tough it out as I am only a year younger than him 76/75. I'm sorry for the confusion, Jane. We are all in this together and thank you for your concern. Our outlook isn't looking good right now, but I'm confident we will get through this. Lee
Am I right that Hospice will come out and make an evaluation, so you're on the record, more or less, and then if you don't need them right away, you can fit back into it when you DO need them..? I have also been told that one should try to get a non-profit hospice org rather than a for-profit one. Visiting Nurses, for instance, though there are others.
I called today to get an eval and really just wanted information. within a few minutes of being her the nurse asked how often do we want her here. I thought gee that is a quick evaluation. I was really wanting respite care and then I foundout that they do not come to your home for that. She will have togo a NH while I get away. I thought that was odd, as they normally work in the home. I was told I can have an aide for 1hr a day. I told my wife that the Doctor sent out a nurse to check her blood pressure, I did not tell her it was hospice. Now I will have to tell her the truth to get the respice and I am not sure what she will think about a NH
Bob I feel for you.. this is the same thing I was told with Hospice. In our area there isn't even a nursing home that would have taken him for respite care! So much for that.... they don't want us to burn out, but they tie our hands. I hope you are able to work something out. Can you perhaps not tell her it is hospice, or a nursing home? It depends on how far along she is, but perhaps you could convince her it is a hotel, a hospital just for a few days observation, etc etc, something you know would not upset her. I was never able to take respite, I hope you are able to! We all need a break from time to time.
I told her later the truth. She asked you are not going to leave me there are you? I was told by Hospice that I could get 5 days respice per quarter. I am not sure, but it seems like it is very easy to qualify for. The hospice nurse told me that she was marginal on qualifing, but that she would approve her for 90 days. It seems to easy to me, she was not there more than about 5 minutes when she asked how often did we want her out. I called the doctor and asked for an evaluation to be done by hospice. 3 hours later they are at my home and ready to get thing rolling. Hospice provide alot of things too. They brought her a walker and asked if we wanted a hospital bed. I will be putting her in a NH for 4 days next week.