I just recently found it overwhelmingly necessary to place my spouse in a full time care facility. There have been some rought spots as his behavior gets pretty aggressive at times. The sent him out of the psych unit in a nearby hospital for a week to get his medications adjusted. It seemed to help...but today when I got home from work there was another phone call from them telling me that he was up at 5 A.M. moving around the furniture in his room and going into other residents rooms and getting them upset. Are they trying to tell me I will have to move him or what? I placed him because of that type of behavior and realized that putting him in there was not going to stop the behavior. I thought they were staffed and better equipped to deal with it...but it seems they want me to come up a a solution. The cost of course is astronomical...though I have long term care insurance. I was hoping for some peace of mind knowing that he is supervised 24/7 and I can get the sleep I need to continue working. Anyone else have these problems?
You are right. It is their job to deal with this. Is he is a memory care unit, or just a regular nursing home. It can make a real difference since the staff in a memory care unit should have special training to deal with problems like this. The NH where my husband is in the memory unit has people wandering in and out of each others rooms a lot. It's just the way things are. Those residents aware enough to not want this usually lock up their rooms. One gentleman in the unit used to take pictures off walls and doors off hinges, so the staff just removed everything in his room such as this. Things also wander around the nursing home, but usually end up back where they belong eventually. If the staff can't deal with this type of behavior, maybe you should look at other facilities. For what a NH costs, solutions should be expected from them. If he's awake at 5:00, there should be someone there who can keep him occupied until other residents arise.
Dewdrop-I have been exactly where you are now. My husband is in his second dementia facility. When the person with dementia becomes a danger to himself and others there is no way out. I had to hire an attendent to stay one on one with my husband or he would have had to leave. My husband has FTD and AD drugs only make things worse. I pressured his doctor to order high dose Seroquel to get aggressive behavior under control. It took a long time but finally calmed him down. No happy ending as he is now stage 6-7. At least he is safe. Absolutely no quality of life. Has not known me for over a year-not even as a person who once meant someting to him.
Dewdrop - same thing is happening to my DH. It has been a roller coaster ride for him for a month as he went to the facility from the hospital then back to the hospital for a minor illness, back to the home and now back in the psych ward for med management. Even tho the aides, etc. are supposed to be trained to deal with dementia's, my DH is much more challanging than most of the other residents. His behavior is quite like your DH. He doesn't sleep so that is a problem in many ways. I agree that they should keep him occupied, but when he is agitated that is quite a difficult thing to do. They assessed him before they agreed to accept him, but I am not sure they can meet his needs. What type of meds is your DH taking? We can't seem to find the right ones. He is not doing well at the hospital and seems to be more confused than ever. Did you find that your DH went downhill after the stress of the hospital stay?
I understand how you feel about the calls from the home and I have thought I might need to hire someone to stay with him. I do feel he may need more care than the current facility can provide but feel I need to do the move after he can get back to his current home. I am afraid some places will not consider taking him if I try to get him moved directly from the hospital.
Bluedaze - how did you determine to move your DH and what did you look for when moving him?
On top of it all, his parents are very unhappy with his treatment (meds) and I think they believe they could do a better job. They called the hospital to check on them and told the nurse that they want to move him to where they live because they could provide better care. They are adding alot of stress. I am almost willing to let them try. They believe that he needs to get off all meds and then he would be much better. It is all a mess.
After much searching on the part of social service from the psych unit and myself only one place would even consider taking my husband because of his extreme exit seeking and potential for violence. He hit staff and patients on the psych unit. I am part of our local medical community and I got sick of being told "he can't be the only one like that". Turns out he was. It is very difficult to find a facility to meet his security needs. Our local fire department prohibits locked windows and my husband attempted many times to exit that way. Isn't this a nightmare.
Alice, how old is he and how old are his parents? Have they ever spent a full day with him? Are they totally in denial about what his situation is?
I'm not in your situation. I'm not dealing with parents or children in denial. But I've seen quite a few messages like yours from people who are dealing with these things. And I find I frequently have a question that might help you make a decision that includes all of your options including the one of accepting the offer of someone else to take over the caregiving and the caregiving decisions.
What is the absolutely worst thing that would happen if they did take over the caregiving?
Consider everything including all the financial ramifications. If they take over both him and his assets, can you survive? Would you survive better without him? What would happen if THEY got sick, or if THEY died while taking care of him. Would it be possible for you to give them partial rights for a limited period of time and take some respite?
You also need to consider what would be the worst thing that would happen if they did take him off all his medications. Is he likely to get violent with them? Is he far enough along that if you take him off the meds he will spiral down into late stage 7? If you do decide to let them take him to live closer to them, you might want to cover yourself by making sure that someone has told them the worst case scenario and that you have paperwork proving that they were told.
Alice, my husband is not at the stage your husband is at, but he also doesn't sleep much at night. My husband woke up at 2:30 a.m. and dressed and tried to leave the bedroom, apparently thinking it was time to get up. Because of my key-locking doorknob, he can't leave our bedroom and bath. However, he moves things around and paces and keeps trying his house key in the doorknob. THEN he made the bed with me in it! I found a movie and told him he needed to sit on the bed and watch it because we were not getting up in the middle of the night so that he could sit in his recliner and go back to sleep leaving me wide awake! He did, but every hour it was the same thing. At 5:30 I gave up and got up. I don't know if having him get more exercise and less naps during the day will help, but we did it today. I don't want to put him on sleeping medication, because I don't know if it would work anyway, but he's taking so many other drugs, I don't want to add to it.
We need to find out what can be done during the day to make them sleep until morning. I wish we had the answers.
As to his parents wanting to take him, It would depend on how you feel and whether you think they would do a better job than you, whether it is what you think he would want, and if there is any chance of him harming his parents if they take him off his meds and put him in a research program. I personally feel that they just aren't ready to give up their son, and are not accepting that this disease is a death sentence. If you wish, Alice, you can make certain that his parents can not even talk to his doctors and nurses without your approval. After you two married, their legal ties evaporated. Other parents with children on life support have fought spouses who wanted to unplug - and fought it to the Supreme Court and lost. The spouse has the say. I would do what I felt is best - which is all any of us can do.
One spouse here allowed her step-daughter to take her husband across the country and take care of him because she insisted she could and our spouse couldn't manage him alone under her circumstances. So that was what she felt was best. After months, she says it seems to be working.
Our thoughts and prayers are with you while you deal with these issues. Please keep us posted.
after 2 stays in the Emergency room they sent my husband to a city about an hour away for evaluation in psych unit. this was Friday night ,we went to see him yesterday after an hour drive to find him sedated he did not know we were even there.it was so upsetting. I left a man who could talk ,walk feed himself andno bathroom problems to a man in chair with a tray to keep him from getting up.The man has never in 42 years has never had his wedding ring off. they found it on his tray a breakfast yesterday. I told my children it was like he was divorcing me.SS SAD and VERY UPSET.........
Nanapapa: The same happened to my husband when he was sent to a psych unit for a "medication adjustment' . he too went in talking, wallking, feeding himself, continent, and was sent back not continent, not feeding himself, not talking coherently, etc. and the medication he was on was substituted by another equally ineffective dangerous medication. I found later the staff p ut his pants on backwards so he couldln't go tothe bathroom by himself. They thought he might go in an inappropriate place . We finally were able to place him in a Veterans home in the dementia ward. His behaviors were dealt wit h in an environmental approach to behavior control and he quickly adapted . Also the medications were reduced gradually as we ascertained that with him they accelerated his inappropriate behavior. I found that the most usual approach to inappropriate behavior is to drug the patient until he/she is too sedated to do any thing but sleep most of the day. The nursing homes are usually under staffed and do not have the expertise or manpower to deal with this type of behavior on a consistent basis. They do not take any patient that is not easily adapted to a nursing home environment. I can see their dilemma however with some perseverance I think that many times the patient's behavior co uld be modi fied.
Dewdrop: My heart goes out to you at this most difficult time in the treatment of your LO. My husband is in his third home since last December. We had some of the same issue you are having now. He has been in the latest home since May and things have settled down and he is getting good care. He is in a small home with only three other AD patients, which has been a life safer for him. All facilities are not alike and with us we had to find the right one for him. At one point we had him in a Psyc facility to adjust his meds. We moved him to the present facility from there and things settled down. The first two places were not able to take care of his wonderings and sleeping problems. The meds he is on now seem to take care of all of this now. We hate to think that meds are the answer to the AD problems, but with the right meds and right facility we were able to get him good care. We did have the help of Hospice in all this transition. We had several meetings which included the hospice doctor and nurse, plus the staff of the facilities. My assessment in all of this, is that all facilities are not created equal and there are some who cannot care for "problem patients" (which was my LO). In our area Hospice will help you with your AD patient. You might want to look into Hospice where you live. He no longer walks or talks much. Is it the meds or the progression of the disease? I don't know, but I am grateful to his angels who care for him.
Please tell us WHAT medications helped the wanderings and sleeping problems! If we can get the neurologists to prescribe those, maybe some of us can keep our spouses home longer.
Thank you all for sharing your stories. It is better to know what could lie ahead for us.
My heart breaks a little for each of you. Hugs to you! ((((HUG))))
Marge: It is difficult no it is horrible. Mine was by crisis through the ER and a week in Geriatric Pysch. It is difficult to place them when they are combative and are wandering. I was so ridden by guilt, maybe this was too soon. All the medical staff said this was way past the time that I should have placed him. Now that he is there he is a model patient. Not a mean bone in his body towards me. I asked his Dr. what brought about the change, he said "Your husband no longer is faced with tasks that he does not remember how to do but yet part of his memory doesn't agree and he is confused and angry" Placing him while he still knows pretty much tht is going on around him has been a comfor to me not him. The only thing that he focuses on now is when I am coming to see him and when he can figure out how to escape. He said he watches the codes being punched in the keypad to operate the secure doors. Why don't they want to hire me my DH asks? I can drive truck, everybody needs truck drivers, why won't they hire me. I still work full time and the worry when he was still at home was enormous he couldn't hear the phone or if he did he didn't know who was calling. I did call one time and he said "I can't talk now I have to get the smoke out of the house before my wife gets home". He was going to surprise me with making vegetable soup for me for supper. He is in a place that can do a better job for him 24/7 than I could. I still cry myself to sleep in our king size bed. There are a lot of adjustments both mental and physical for both spouses.
Dewdrop, I agree with DarleneC - all facilities are not created equal. That being said, part of what causes the problems is where they are in the disease. My husband has also gone the aggressive/combative route. He took 3 trips to the emergency room for agressiveness and spent 6 weeks in a psych ward where he was medicated down to a wheel chair and became a zombie. I was fortuante enough to work with the social worker who helped us get into the facility where he is now. They specialize in difficult patients and do very well with them. Their attitude is that if they are not hurting themselves or someone else, just about anything is okay. The place is set up for that. We moved him there, lowered some of the meds and he was able to get up and start walking again, feed himself and putter around getting into things. I truly believe that I got an extra 6 months of time with my husband because of that.
Finding a good place and the right place for them is crucial. The other thing to understand is that even though a place is good for them for a while, as they move further down the path of Alzheimers, that place may not be the right place for them anymore. Hospice, hospital social workers, the Alzheimer's Orgnaization are all excellent resources that can help you find a better place for him.
One of the disturbing things for me was that while things were very good for a while in the first place, as he became more aggressive, I kept seeing fear of him in the eyes of the workers there. That was very hard to deal with. If the workers are uncomfortable with a person and their behaviors, changes need to be made. The change may be simply educating the workers or going to another place.
Dewdrop, I too had similar experiences as many have related. The first facility my husband was in had a Memory Care Unit as well as regular Assisted Living. The caregivers were all trained the same no matter their working assignment. They could not take care of my husband. They constantly complained about his behavior. I moved him to a facility that is only Alzheimer's care. He now gets great care from all the workers and staff. This facility is much more expensive but it is worth the money. The med that seemed to help his aggressive behavior the most was Resperidal. He no longer takes it but we could not have made these moves without it. Good luck and don't give up.
I put my husband in a care home 11 months ago. I cried all the way home, but it was of relief. I hated putting him there, but his care was about to kill me physically and emotionally. He is in a wonderful place and his care is excellent. I miss him, but I've missed the real him for years. He has also had several strokes, so has a multiple amount of problems. He does not talk anymore, due to the strokes, and just smiles. They give him meds for his combativeness. For awhile, he was banging his hand again the bed siderail and shaking his fist at the nurses, but with the meds, he is much calmer.
Judi, what a coincidence, tomorrow the 8th will be 11 months since I placed my wife in the nursing home. I had the same problem in that caring for her at home was killing me physically and emotionally. I could not hire enough help fast enough to keep her at home. When you are exhausted and sleep deprived and the hired person decides not to show it just becomes too much. I feel like I have to spend a lot of time at the nursing home and perform the quality control function in order to ensure that my wife receives consistently good care. It seems that over the past five years I've gone from loving and sharing life with my wonderful wife to loving and caring for a little girl. I cherish the little girl and will do everything in my power to keep her safe and comfortable but I miss my wife. Like Jenene56 I often cry myself to sleep—nights are the worst time—but ours is only a queen size bed.