I have been on this site before and received some good advice and support. Things are going rapidly in the wrong direction here. I had to place my husband in a facility because it is necessary for me to work full time, I couldn't leave him alone, and I also couldn't cope with caring for him alone. There were many hiccups along the way, including a facility which couldn't contain him (wandering) and one I couldn't handle because they kept him grossly overmedicated and didn't seem to care for him at all...he lost 30 lbs in 4 months. Now he is out of control at the new facility. He almost never sleeps, will not sit down for more than a few minutes..moves furniture constantly and doesn't listen to instructions at all. The furniture he moves is his own..(he destroys his room several times a day,) and furniture in the group areas of the facility. Now he has fallen a few times..while moving furniture..and the director has indicated that he will probably not be able to stay there unless I hire someone to sit with him several hours a day when he has these sundowning episodes. I can't afford this. No Dr. seems to be willing to try to adjust his meds appropriately and I am out of endurance, ideas and soon will be out of money. What can I do? The whole situation seems totally hopeless.
Dewdrop421, I understand your frustration. It's late and most on this site have gone to sleep. Check in the morning and you will hear from them. Lots of folks on this site have much experience and will give you all the help they can. Hope you get some rest this evening.
Dewdrop, how frustrating. That is so scary and I feel for you. However, I have had no experience with any you are going through so just hang on and tomorrow I feel sure someone will be able to help you. ((((((((((((hugs))))))))))))))
First of all - is your husband's doctor a neurologist specializing in Alzheimer's Disease? That is essential. If not, tell me where you live, and I may be able to direct you to one in your area (you can e-mail me if you don't want to post it publicly). It does sound as if he needs to be properly medicated - not to the point of being a zombie, but enough so that he is not so agitated.
Secondly - is the facility in which he is living a dementia specific facility? It's the same advice we give about Day Care - if it's not dementia specific, and not staffed by professionals specifically trained to deal with dementia patients, it's common to run into the kind of problems you are reporting.
For much immediate assistance, you can contact the Alzheimer's Association hotline - 800-272-3900 - and tell them the situation and that you need help NOW.
Sorry to hear of your situation, please find your husband a good Neurologist with experience treating AD and the various types of Dementia. If your husband is falling you may be able to get him placed in a hospital where they can do a medication adjustment. His stay can range fron 5 to 14 days in the Geri/Psych Ward, but they will get him weaned off any medications that may not be helping him or actually worsening his symptoms. They will get him started on a a medication regimen that will help control some of the anxiety and agitation he is now experiencing. There are several medication that can be safely given to him to help control these behavior patterns.
Try to find a nearby nursing facility that has a good dementia unit and consider placing him there.
I know this is a tough situation for you, I still work and had to place my DW in a NF a month or so ago. You didn't mention your husband's age and if he is on Medicare, that may change the way the case needs to be managed. Talked with the Case Manager or Case Worker at the NF where he is now staying, they may be able to get you some more help even if it means tranferring him to another facility. Don't worry they are not going to put him out on the street.
Some of the others will be by as the morning progresses, there is a lot of good advice available here. Hang in there, you are not alone on this journey, there are many of us here who have the traveled the same road.
Dewdrop--I know how distressing your situation is. Believe it or not, I have a friend whose spouse is a mirror image of your husband. He is seen by an expert neuropsychiatrist, was in a geriatric psych unit for 9 weeks where they tried to regulate his meds. Then he was released and placed in a dementia care facility, where they could not manage him--he was thrown out. He is now in a second facility, walks constantly, does not sit down. He has fallen and injured himself, my friend was told to hire a sitter. Apparently, the walking is a form of agitation and in him, it is very difficult to medicate at the right level--too much makes him a zombie, too little, and he's always on the go. It has been months now and it sounds like no success.
I'm very interested to see if anyone else has other suggestions.
If at first you don't succeed, try, try, again. We had our Neurologist recommended to us and we love him. However, along the way we saw one through the VA that we would NEVER go back to. If you don't find that "connection" with a doc, keep looking, having someone who is a partner on this journey is essential. Good Luck, let us know how you make out.
Susan is right, sometimes you will have to sift through these Neurologists to find one that you can work with. We went through several Neurologists here in Atlanta, some were supposed to be tops in their field, but lacked the ability to be able to relate to the patient, one had a very loud voice and DW didn't like him at all athough he was one of the most talented. You will find that Neurologists are a strange breed, they are not all equal in their ability to treat AD.
We found our best match three miles from home, he was a very soft spoken guy, pleasantly persistant and very willing to listen to my daughter and I. He was able to work with us and DW quite well for several years. He even agreed with us that it was time for placement and encouraged us to take the step. He was the fourth Neurologist we tried. The recommendation came not from another doctor but from a nurse at the hospital.
Thanks all for the suggestions and encouragement. I live in a somewhat rural area, though near very large cities. I am going to call the Alzheimers Association again...did so sometime ago, but not since the worst of this situation kicked in. I am frankly not "connected with any of his Dr.s..Md, Psychiatrist or Neurologist, and as stated before, they are at odds with each other. I do feel as if he will be out on the street if something isn't resolved soon, and I sure do feel alone, though I really appreciate all your responses. Thanks
Jimmie..interested your good physician match was recommended by a nurse. Doctor's often work with each other ...PCP gives referrals to same neurologist and that neuro gives PCP referrals in return. So referral patterns are not always based in competency. Nurses work closely with doctors and usually give referrals for doctors that are not only based in competency but also caring bedside manner. As this horrific disease progresses ...caring almost takes priority in dealing with placement and end of life issues.
Dewdrop do you have a friend who is a nurse? Do not hesitate to ask for assistance. Good luck.
Dewdrop, you are not alone. I agree, if you knw someone who is a nurse, that might be a good place to get a recommendation. We worked with a geriatric care manager (typically a nurse or social worker) who used her network to find a great geripsychiatrist for DH. Hourly rtae runs from $100-$150, but it was worth it. Another resource might be the social worker at the hospital or in the Office for Aging in your area. Pacing is a form of agitation; it took doctor's 3 months to find the right med combination to control DH's pacing, agitation and aggressive behavior, but weve finally solved the problem for now. Based on DH's age (59) and physical strength combined with agitation, aggression and "flight risk", very few ALFs of NH's (even those specializing in dementia) would not even consider taking him.
You know I've thought about this and thought about this. When I moved here I went to my pharmacist and asked about doctors who were taking new patients. That actually might work in this situation too. Also, you could call a local hospital, explain that you need the name of a neurologist who specializes in dementia and ask who to talk to so you can find that person. If there is a local Alzheimer's Association office near where you are, they might be able to help. And if there is a day care, or nursing home that is advertising that they have an Alzheimer's unit, the caseworker there would almost certainly know which local doctors get it.
Dewdrop, I don't know how old your dh is or what insurance is paying the nh bill, but my dh was also a pacer. I had to place him in April and found that it is very difficult to get the right care because of the "system". But, I cannot care for him at home and he is too agitated not to be medicated enough to stay where he is. I do not have any choice in the facility he is in. The Va pays the bill and there is no other VA approved contract in my area-and I had to fight to get him contracted here. My dh also was mobile and very strong. He was a fireman for 28 years till he had to retire at age 53 with ad. He paced constantly-I could not get him to sit!! I even had to walk around after him with a spoon to feed him. He was injured the first day he was in a nh and from that day forward, he has not been out of a wheel chair with a belted alarm. He was dangerous to the staff and himself. I spent yesterday afternoon and evening in the er with him because the nh changed his room, bed, aides, nurse andmed schedule all at the same time. He became agitated and unruly. You will be fighting for a while till he passes through this stage but I feel I'd rather have him a little more medicated and be safe (along with the staff) then living an agitated life. I wish you luck. I too cannot afford to pay for personal hired caregivers while he is inhouse. Come back and read often. Know that we are here to help you get through this difficut time and offer you {{{{HUGS}}}.
Thanks so much everyone. I have sat with spouse the last two nights..Monday until midnite, tonight till 10 P.M. He had been up since 4 AM this morning and was so tired he was slurring his words and mumbling but wouldn't stop pacing. After several unsuccessful tries to get him to lay down, I said "I have an idea..I'll sit and watch TV and you just walk around all night, OK?" He said "I'm so tired." and I said "well, most people go to bed when they are tired." He answered "I could do that.", and I got him into bed and he went to sleep. How long that lasts I couldn't say...I came home. Today they stopped the namenda. the aricept and the resperidol. He has been on namenda and aricept for five years. If he becomes immobile because of the withdrawal, will that be worse than this constant moving, pacing and agitation? This disease is the worst nightmare I can imagine, with no hope in sight. An end to it will be the only relief, and how awful is that?, knowing that your beloved spouse's passing is the only relief you can hope for? Tomorrow night I have to work and have been informed I need to get someone to sit with him, and that I cannot pay one of the staff to do it. That makes no sense to me, as he is familiar with them, a couple of them would be ready and willing to do it, but they have been told they can't. Does it seem more reasonable to hire a total stranger to sit with someone in his agitated condition? I am sooooo frustrated. I really can't afford to hire someone, but have no other choice as long as he keeps up this obsessive pacing.. The answer to the question about who is paying...we do have long term care insurance which, thank God, we took out several years before the onset of the Alzheimers. Since he is in an assisted living facility..not a nursing home, it pay 60 percent of what it would pay for a nursing home. He doesn't qualify for a NH cause he is too healthy. What a ratrace!
Just wanted to add, my hubby is 73...much older than a couple of you who say yours are in the 50 range. I am soooo sorry for you having to face this at a still productive time of your lives. I am 74 and still working full time, of necessity, but even that seems better than having to face this thing 20 years ago. God Bless and keep you!
Dewdrop-my husband is also in an ALF. They contacted our LTC company and negotiated full payment arguing that the cost of a SNF would be higher than the ALF-and won. I also had to pay out of pocket for an aide to stay with hubby. Put him on large dose of seroquel until he calmed down, then reduced the dose. I feel so sorry for you as I have been where you are.
Dewdrop, When I took my DH off the razadine and namenda his agitation and pacing decreased a lot. Maybe that will help in your case. Did they cut him down gradually or just stop it cold?
Gmawok...sorry it took me so long to answer, but got a call on Friday morning that my husband needed to be sent out...had a fall and they wanted him checked out. I took him to the hospital where he was admitted and is still there. Everything was fine, but I am going to have to relocate him to a SNF because of his behavior..the constant pacing, agitation and combativeness. He is just out of control. Maybe we could blame some of it on the waitdrawal of the Namenda, but he was starting this behavior before...which was why the decision was made to withdraw the meds. I am learning from the social worker at the hospital that in order to get any aid from medicaid, I will be reduced to poverty level. She told me that all my husbands SS and all assets except for the house and car must be set aside for them before I can get aid. I will be left with my SS...not nearly enough to get by...no more than $2000 in a savings account and that I cannot earn more than $7.00 an hour or they will take some of that too. This just sounds ridiculous to me, but the social worker swore that this is how it is. I am sick with frustration and worry. I want him taken care of in the manner he deserves, but what can I do? This social worker even said "Maybe your best solution is to quit your job, take him home to care for him and hire someone to come in and help."...Now, tell me, how can I afford that? Of course this all had to happen on a weekend when all other sources of info and help are closed, so I will have to wait until Monday to look into it further. She (the social worker) said.."Basically, this is HIS money, so will be used ot care for "HIM".. I said, but how about me? How do I live?", she answered that that is not their concern right now...just my husbands care. I am just flat overwhelmed! Thanks for all the suggestions..By the way, they ended of having to give him strong injection of Ativan to finally get him to go to sleep. He had not slept for more than 10 or 15 minutes in almost a week..just up pacing and getting more and more agitated and angry.
THAT IS NOT SO!!! You need to talk (again I say) to an elderlaw attorney in your own state, but call the alzheimer's association and ask to talk to someone... Social workers at the hospital are not at all the best people to talk to about people with dementia, etc.
We all know that we get a lot of just plain wrong email, passing along wrong impressions, just flat lies about all sorts of things. We all know to go to Snopes to check them out. (or most of us do) But some of them come from friends who are far from gullible fools. Well, as far as medicaid provisions go, it is true that not everyone, even social workers, even nurses, even lawyers who don't specialize in it, just flat DO NOT KNOW what is accurate information. Wait till Monday, call the alz. association, and get any help THEY can give you but also find out the elder law attorney you can talk to. You may also, before then, want to go to the medicaid sites Joan lists, and go to elderlawanswers.com and read around in it.
The last thing in the world I would want to hear anyone tell me, whenever, is "calm down." or "take a deep breath", so I will not say that to you!!!
Yes, please do NOT take the social worker’s word on this—and definitely don’t sign any papers of any kind. What she is telling you sounds very questionable, if not downright wrong. All kinds of people have given me wrong information, including attorneys who don’t specialize in these things and our local council on aging. After a while I realized that they go by things they have heard, things they think they have heard, and other just absolutely wrong information. Talk to a lawyer who specializes in elder care issues and Medicaid. It takes a while (and does cost), but it can save your financial life.
I agree! That just does not sound correct. Please follow up as suggested. Also, maybe talking directly to the medicaid agency for policy could help. There definitely HAS TO BE someone that will work with you.
Somewhere on another thread to do with Medicaid, it was explained that when an LO is placed and goes on Medicaid, there is a formula that determines what part of the household income goes with the LO for their support. It is explained that there is a figure, I think about $1750 a month that the spouse must be allowed for their maintainance. They cannot be left impoverished, even if it means some of the LO's income ends up going to the spouse. That may not be as much as the spouse is used to, but is definitely not as bad as the social worker asserted.
I only read this recently--a few days or less ago. Try the Search option.