It's been months since I visited this site. I thought I was doing really well and could handle whatever was shoved my way. How wrong I was. I finally had to give up my paying job last August. Even working part time and then caring for DH the rest of the time killed me. I finally made the decision to move in with my youngest daughter last February. I needed help. A call from the Police Dept where my parents live made me make a trip home to them. Mom was hospitalized and had surgery. Dad was left home, until he made a 911 call. Guess after talking with him, they realized he had dementia. APS took him. So had to get him back, go to the hospital and see Mom and find out what was going on there etc. 3 week into our stay there (DH came with), DH was admitted to the hospital. Had these falling spells, no warning, just fell. 3 days in the hospital, had to send him home with his sister while I delt with issues with my parents. Long story short, Dad will never be coming home. I was forced to have him placed in LTC, Mom (82) cannot care for him with all the medical issues she has. Brought DH home last weekend. Hadn't seen him in 2 months. OMG, the issues I have now. I get no sleep. He's up and down all night. He doesn't know where his bedroom is or how to get to the bathroom. I assume he knows he has to use the facilities, but he doesn't remember to unzip his pants etc. I've noticed also that he isn't eating like he did. He eats all the snacks with no problem through. He doesn't talk per say, more of a mumble and nothing I can really understand. He can't shower himself or shave himself anymore. His walking is very very slow. The roof just fell in on me. I believe he is at the end of stage 6 and moving on to stage 7. I'm going to try and contact the Alzheimers Association here today and see what they can do to help me. I'm a prisioner in my own home and to be truthful, I don't think I can take this much longer. I feel so guilty, I'm trying but I'm tired.
I'm so sorry! You do have your hands full! You need to have his doctor give him something to help him sleep. Some have had success with Melatonin (which is over the counter) - I have my husband on Ambien to help him sleep through the night.
You can not function if you are sleep deprived. That is the first thing I would address. You can see about getting in-home care at least one or two mornings or afternoons a week to get some respite and be able to do what you need to do and relax some.
You may want to call Hospice and have them come out and see if he qualifies. When Hospice comes to your house, let them ask him the questions. Do not answer until AFTER he does or they ask you. That way they can judge his lack of abilities better. Let them see him as he is. If you get Hospice, they will come to your home and bathe him and shave him and brush his teeth, etc. Some places have Hospice care that does a lot more.
You might hire Molly Maids or Merry Maids to come at least once a month to clean the house thoroughly for you for this period as well.
Keeping up with the laundry and keeping them fed and taking them to the bathroom (it might be time for Depends) and getting them something to occupy their time (whether movies, model kits, Lincoln Logs, etc.) will wear you out without the other things I mentioned above.
The change of eating habits and of the foods he eats is normal with AD. It really doesn't matter what they eat, honestly...desert first, or more bland foods, or finger foods - as long as they eat food...it doesn't have to be a meat, two veggies, and a salad any more....
Try to accept the changes as part as the disease, fix what you can, take good care of yourself and try to be more flexible.
I'm offering prayers for you, him and your parents. You have a lot on your plate!!!
I'm so sorry for all you are having to deal with. What a load dumped on you! My situation is nowhere near as bad as yours, so I can't offer advice other than to listen to Mary. She's my model for someone who is taking beautiful care of her husband and of herself at the same time.
Thanks Janet and Mary: Mary, I can't afford Merry Maids, my daughter and I together do the best we can. Unfortunately my daughter is a full time college student and also works. I thought Hospice was bascially available for those dying within a short period of time. With Alzheimers, no one knows when they will pass, it could be 6 months or 6 years. I keep the TV on all the time, but what I found was he doesn't even look at the TV. He cannot do any type of kits and such, he hasn't been able to use his hands for stuff like that for some time. Recently, he's has issues just holding a fork to feed himself. He has anger issues also. We find him hitting what was his dog, I feel sorry for the dog, he's 11 yrs old and just doesn't understand. This was his companion for such a long time. I guess your right about depends, will check into that today when my daughter can take me to the store.
Rae Ann, look into hospice. With AD, since we cannot predict when they will die, all that is required is that they show deterioration at each review period - every 60-90 days. From your description it sounds like he should qualify. My wife is now on hospice. The major advantage so far is that I got a 5 day respite where they took care of her while I went to visit our daughter. Unfortunately for me I don't see much, if any, deterioration and our next review period is the middle of July. Her doctor has told me not to worry, that she knows what to say to keep her on hospice.
Rae Ann do look into Hospice, with dementia it is a whole new ball game. Many have what they call a palliative care program. They can keep their clients for years. They looked after my husband for almost 4 years. If ever they do decide to discharge they can always come back in at a later time. All they need is a doctor's order to make a no change eval visit. Many hospices even supply depends and medication related to the admitting disease diagnosis. Don't give up.
Rae Ann, Hospice has a guideline to follow: if they can't feed themself, dress themself, converse, walk without assistance and a few other details, they will qualify for Hospice. As long as they continue to show a decline, they will stay on Hospice. My husband has had Hospice for a year now. Call them and have them come out. It won't hurt, and he might qualify and you would get a lot of assistance.
My husband can only hold small objects in his hands...like his battery powered toothbrush which he loves.
His doctor should be able to prescribe some medication for his anger issues too.
I know what you mean about the cost of Merry Maids...
I'm sorry about the dog too. My husband keeps trying to take the dog tags off her collar from some reason! We have to really watch him! <grin>
Rae Ann, I feel so bad for you. I'm nowhere near as bad off as you are. My husband can do things for himself right now. You have good advice above. Please follow it. You need some respite.
To the others who are giving advice, I'd like to ask what may seem like a very stupid question. Do you have to pay for hospice? Even if it takes a year or two, or possibly even longer?
Rae Ann, please look into finding some more help somewhere whether it is Hospice or something else. Check with your Area on Aging. We qualified for in-home help for over a year before my husband got so bad he had to be placed. You can not keep going without sleep. I know because I tried and there was no medication that would keep him down for more than a short time. Lack of sleep for myself was the biggest factor in placing my husband.
Your Area Agency on Ageing will have lists of ources for nearly anything you might be needing--in-home help; day cares, NH, Assisted living, transportation, etc. In some areas , like mine, there is a dedicated millage to fund services to help Seniors stay in their homes. Applications are based on income.
Hospice is most often at no cost out of pocket to the recipients. I have heard of some who will do the ordering of all meds, but the recipient still pays for the ones the patient takes which are not related to their Hospice coverage--basically just being more convenient.
I only know about hospice and medicare. For my wife there is no charge for anything related to hospice care, including the 5 days in the hospital while I was away. They pay only for the meds used for symptom relief - nothing for the diabetes meds, high blood pressure meds, or the Exelon for AD. She is seen by a nurse once a week, by a social worker at least once a month, and by a massage therapist (for her, not me) periodically. So far I have not needed home-health aids or any special equipment.
Rae Ann, I'm so sorry to read your situation now. Wish there was something I could add but the comments above are from wise people more experienced at the later stages than I am.
I went to the Alzheimers Association yesterday to try and get information. I was told that Hospice will only come in when the patient is near their end. Basically I was told that "I need" to provide care. Yes there are places to take him, Adult Day Care etc but you have to pay. I have no income other than DH SSD, so that is out. They is a program through Butte Home Health that I may be able to access, and paid for by Medicare, however, it only lasts for 6-8 weeks. I'll call, but then I wonder, should I use it now or at a later day when things get even worse. Someone ought to write a book on all this stuff. It take more time to call, get more numbers, call etc before you get someone that may be able to help you. I'm so tired to being turned away and being told they can't help me.
Is your husband a vet? If so, check with the VA about Adult Day Care. My husband goes to a day care that has a contract with the VA three times a week. They pay most or all of the fees depending on your income.
RaeAnn, don't take the Alz. Assn. words as "gospel". Our local chapter told me sooooooo many things that I later proved to be incorrect. My husband was accepted into Hospice but absolutely NO ONE believed he was 'near death'. He simply couldn't take care of himself, and Hospice doesn't make decisions based on who else in the home could do for him. bathe, shave, help wall, take care of bathroom needs. At least mine didn't. He had pee'd' in his pants (just a big spot) while the nurse was here evaluating him. Listen to all of us who say that when the nurse comes to evaluate - keep your mouth shut and let them see his limitations. If you give him hints as to what to say, you will be sabotaging your own self.. If one says NO, ask another. Two of us, I know of, were turned down by one agency and then aqccepted 5 days later by another. I live in a major city and our Alzheimer Association is so inept. Memory Care Centers in our part of the city refuse to even ask or invite them to events benefitting AD or to sit on panels anymore. They won't show up...and all of their training is at their office or in churches very near their office, depending on space required. Example: I called and asked if they could recommend an attorney who worked with Elder Laws. They faxed me a two page list that I could not read. It had been copied from copies from copies and was crooked on the page..totally blurry. Would you not think they could have a volunteer type up a new list. (And! all the attorneys were within 5 miles of their office, which is 25 miles from where we live...
i agree with Nancy. Don't rely on the Alzheimer's association. I think they mean well, but I have not been impressed. When I asked about Elder Care lawyers, they copied names of lawyers out of the phone book and sent the list to me. None were elder care lawyers. Furthermore, I was told that they cannot make recommendations, they can only give names. They also won't give recommendations on care facilities.
Ok, I googled Hospice in my area and found 3-4 different ones. When I call, what exactly should I say? Most of the info on their webpages say "end of Life" etc. Well, we all know we don't know exactly when that will be. I don't want to be caught off guard.
ii know most say to call hospice directly which is good but with a drs input to hospice its almost a slamdunk they will get accepted. if his dr knows of his limitations which should be documented in his file then maybe he would be able to make a call on your behalf. if thats not possible then do call the the ones you chose on your own. there are certain specific requirements they look for when applying. loss of a few of everyday ADL=loss of weight, loss of mobility, falling, inability to feed themselves, incontinence, unable to bath themselves, are a few. they are all different, call them all and have separate evaluations. divvi
Our local AD ASSN sent me a list of elder care lawyers in our county and listed who was a certified elder care lawyer and those who, while not certified, belong to the elder care law assn. Ours is real hands on so far. They provide respite, events for care givers to attend and guest speakers to help train caregivers..so far so good for support. I called on elder care lawyer and am in the process of setting up a meeting to go from there. I have been digging into our living trust and some things are already in order I think..but I know there will be things needing changes too but I think those will be minor and apply more to me than DH.
About the DH who is in the destructive mode...perhaps a call to the neurologist may be of some good, perhaps a medication adjustment or something to calm him but not knock him into the middle of next week.
Rae Ann you should say your husband has AZ and tell them you think he's a solid stage 6 and that you would like to have him evaluated for hospice care, and/or for palliative care (find out if they provide it; it's not as complete as hospice care but you can get advice from the hospice people in either event). Then do as everyone says and don't try to prompt him on answers. They will want to talk to your doctor too, but you can make the call and talk to the people at the various hospice agencies and if one sounds good to you, have them check with your doctor for approval. Remember, AZ is FATAL. They are supposed to treat fatal illnesses.
But it's not full time care by a long shot at least not till he really is at death's door. It's two or three times a week of bathing and shaving and cleaning them up, on their timetable, not yours. You can't leave the house, really, with them there, at least not at first. However, if you're lucky the nurse and the social worker and the physical therapist who show up will be able to give you advice on how to deal with him, how to get aid assistance, etc. And that can be very helpful.
This is my take on the Alzheimer's Association--the national office (Chicago) has a very loose hold over the chapters. Consequently, they vary enormously from state to state. Some chapters are great (as ours is in MD)--others, not so good. For those of you who have been turned off by your local chapter--make a mental note. If you're looking for something to do "after", this would be an opportunity to get involved and try to make a difference for those coming after us in this terrible situation. Only those of us who have fought this disease on the front lines really know the type of support that is needed.
I guess CA is among those states that aren't the greatest, as far as support goes. I moved from one county to another hoping the later would be better, NOT. I was able to contact Butte Home Health which has a Deminta Program, it last for about 60 days on average, but could go longer if deemed necessary. The downfall is, it must be ordered by the Primary Care Doctor, whom we won't see until this Friday and then who knows how long before someone actually comes out to evaluate my husband. Has something to do with find the right mixture of medications to help with all the issues were experiencing, not sleeping (up and down 7 times a night), combative behavior etc. Not sure what else they do. I asked about Respite care and was told the assigned nurse would have that information, so I sit here and wait again. Seems as though thats all I do these days.
Marilynn, good suggestion. I am going to get involved in the Dutch Alzheimer Association. The fellow who's in charge of revamping the website forum (it is VERY inactive) was one of the volunteers at a vacation week we just got back from and he was enthusiastic about my offer to help redesign and revitalize it. I told him I had the best possible example!!
By the way these vacations are a wonderful thing that our Alz Ass does: they are week-long vacations for caregivers plus patients (referred to all week as "our special guests") and run mostly by volunteers. The woman who was in charge is the creator and moving force behind these vacations, and manages the whole program. I just got back from one and it exceeded my wildest dreams, it was like a week-long support group filled with fun activities and as much help and respite as you needed or wanted; I feel revitalized. Just wish I could go again next week.