My wife entered a nursing home on March 17. She suffers from FTD and in recent months had become increasingly combative with my caregiving efforts and I felt that it was time to move to the next phase. The nursing home's response to this combativeness, however, is to medicate her with anti-psychotics to the point that she is totally out of it most of the time. When she went in, she could walk and she was a voracious eater. She is now wheel-chair bound and will probably never walk again. She has no interest in her food even on her best days and on the worst days she is so drugged that I have had to spoon feed her pureed food. Yesterday she was so out of it that she wasn't even in a wheel chair. She was lying in one of those geri-chairs ( a recliner with wheels ).
As I see it my choices are:
1. Leave her where she is and try to get her meds reduced. They are not too receptive to this idea as long as she is fighting their care.
2. Leave her where she is and just stay away so I don't see her condition and avoid the heartbreak. I really can't do that to my wife.
3. Find another facility that will care for her without the medications. I can't immagine that there are any that would tolerate this combativeness.
4. Bring her home, hire an Aide and let her be combative with me but also get some of my wife back. When the drugs are reduced, she can smile and minimally interact with people. Now that she is no longer standing or walking, though, I will not be able to physically get her in and out of bed, bathed, dressed, etc.
Needless to say, I am at my wit's end. As I see her deteriorating so rapidly, I blame myself for making the decision to place her. If I'd known then what I know now, I never would have. Now I feel trapped by the consequences of my choice.
I have not placed my husband as yet, but I DO understand your feelings. You want your wife non-combative, and her to be with you and be able to enjoy more time with her. I don't believe that it is likely to happen. Maybe the NH will work with you and try to ADJUST the medication so that she isn't quite as comatose, yet still non-combative too. They do reach a point where their physical fighting makes it impossible for others to care for them. Even those you hire won't be willing to take physical abuse. I wish you could find a happy medium, but please don't feel remorse for having done the right thing for YOU AND HER in placing her.
Many here have described the problems in getting the medication adjusted after placement. It is a common problem. Please don't feel trapped, nor remorse. She would probably have deteriorated with you as well, and maybe, down deep, you knew it was coming and hoped that the NH could keep it from happening longer.
The downhill slide is SO PAINFUL to watch. We feel so helpless and don't want to let go!!! My thoughts and prayers go out to you and her.
Baltobob, I placed my DH in mid-January. He gave them a hard time at first but he has settled in and seems fine now. Maybe you can talk to them about cutting back on some of the meds. I would give it a little time yet. They seem to keep them in wheelchairs so they don't have to worry about them falling. He told his daughter that he loved it there and everybody was so nice. I'm glad he's adjusted to it. I go to see him every other day. He still knows me, thank goodness.
Baltobob I was exactly where you are now. My husband was so combative in a dementia facility that I had to hire an aid to stay with him or he could not have stayed there. We medicated him heavily to calm him down and gradually decreased the meds. I had a psych home health nurse moniter and report his status. As Bill was in an ALF medicare paid for home health nurse to do the assessments. I am so sorry for you both.
I'm glad to see helpers coming to the rescue, Baltobob.. I started out saying others would be along..then got too long winded and when I sent..it didn't go.. Nevertheless, I have to echo now by saying you are doing the very very best you can. I haven't gone through this yet but am sure I'll be thinking many of the same things even though I KNOW that the progress will continue downward rather than upward. I think its a natural thing to believe if they stay home, they won't progress 'as fast'..The truth may be that they are going to progress no matter what we do. Maybe though, the medications can be adjusted so that she can function better. Blessings to you.. Hang in therreeee!!
Baltobob, I had a similar experience. My husband went into an ALF and was fine for about 4 months. He then started to get more and more combative. The ALF ended up shipping him to a psych ward for a med adjustment. He went in walking, talking and eating. His meds were adjusted so that he became a zombie - not walking, not talking and no longer able to feed himself. After a while, they started to reduce his meds and he did improve. Further reduction and he was able to walk again, talk again and even feed himself again. One explanation that I got that actually made some sense was that sometimes when they are going from one stage in AD to the next they can get very combative. Once they get to the next stage, they calm down. My guideline for how much medication for my husband was enough to help keep him calm and not have him hurting his caregivers. If that meant that I lost a bit more of him, that was okay - he would not have wanted to hurt someone.
One of the other things that I noticed that made a huge difference with my husband was how he was approached. His signature song was "I Did It My Way" and that hasn't changed throughout the disease. What we found was that if we told him what we were going to do and gave him time to accept/agree, there were a lot fewer problems with him.
You know your wife best and know what she has been comfortable with and what she hasn't. You are her best voice and advocate at this point. It was very scary and heartbreaking watching what happened to my husband. It took a lot of working with the staff and doctors to get him the right amount of meds but it did happen.
Several have mentioned working with the NH to adjust or reduce the meds. Also consider the possibility of changing them. The psych meds are often kind of scary to use if you haven't before, but they do work. Thing is not all give the same result on various patients. Some swear by Seroquel for calming but leaving the patient functional. It makes my DH sleep. So if adjustrments don't work, ask about changes. This can be handled.
((Bob)) When I placed Lynn, Feb 17 2009, he went through a horrible transition period. They had to medicate him to calm him down. But they have a firm policy that they do not over medicate. He still walked etc, the main problem we had with him was he would not eat.
I felt all the things you are feeling, and more. I KNEW I had nothing to feel guilty about, but still, I felt the guilt. So, I know it will do no good to tell you not to feel certain ways…. You are who you are and right or wrong, you can’t help how you are feeling.
I will say, at about the 3 month mark, he started adjusting well, just like they had predicted. After a lot of research I suggested Megace, it was a our “miracle drug” It gave him back his appetite and he did start eating again. He went from 92 pounds to 129!
I would suggest you call an emergency care plan meeting, I did this several times. As others have said, you are now your wife’s advocate. I do know nursing home, or personal aides can only tolerate so much abuse, but they SHOULD be willing to try to lower her medications. The major benefit of the medication is to calm them down, it isn’t healthy for THEM to be that upset and agitated either. But she should not be medicated to the point of not be able to function at a level she is capable of. Address your concerns to the correct people, not just the regular staff.
Try not to beat yourself up too much. Lynn was doing wonderful at the nursing home. He was content, as happy as one can be with late stage AD, well adjusted and functioning well….. but now he is in another major decline. This would have happened regardless of where he was……. I am so sorry you are going through this… big hugs of understanding ((HUGS))
Oh, Nikki, you are so wise! I know you're going through a lot yourself with your dear Lynn.. and BB, I am so sorry for you. Of course you've shown a lot of us who are still denying that we need to place our husbands that there is a downside to doing so. All my life I've said, if I can just get through THIS busy time... if I can just get through THIS crisis... and I'm realizing that there may soon be a crisis I can't get through without a great deal of pain and heartache. Thank you for being honest about it, and thank you Nikki for showing us there is a beyond...
therrja - i can really connect with what you say about the combative behavior as they go through a stage that means major change. We will be perking along and then he will start to act up - when we get through that episode, his functioning was less than before the acting up. I guess I would fight too. It is easy to forget that he has that pattern - so thank you for reminding me. Nothing lasts forever - it jus seems like it.