Expert: Mary Gordon - 11/17/2009

Question
I have placed my husband in a personal care home. He has been there for five weeks. He has had a terrible stroke almost two years ago and was diagnosed as mixed dementil. He can barely see and cannot find the bathroom. He has always been a night hawk and gets up at night to walk about.  The Dr.in this new home ordered Resperidon .5 mg to control what they call sundowning.  He has been highly anxious since the  drug was administered ( for a week now ) and is having delusions and confusion that was not apparent before the drug.  The response to his aggression has been an order to give him 2.5 to 5mg. of Haldol intramuscually if he presents aggressive behaviour that is threatening to the other residents or the staff. Five weeks ago when he was admitted he showed very little aggression and a Geriatric Dr. stated it was too early for him to go to a home and that when he becomes fed up and I become  unhappy to withdraw him and bring him back to the program he heads that has been designed to keep people out of Homes until as late as possible. My husband states the Staff are driving him crazy with all their demands for him to do things their way and on their time and that they wake him up at night a lot.( this is true ) He was home for a weekend and was very happy although he did not recognize me at one point and is definately suffering from dementia perhaps mixed with Alzheimers.  The home state they think that if I took him home he might get aggressive with me and ask then what would I do. And what would I do if I got sick and had trouble caring for him. Meanwhile money is not a plentiful as one might like and while I thought his entering the home would mean I had a crack at a life that was something other than managing him I find that the home cannot keep him engaged in activities or conversation and that I have to be there a huge amount of time or he falls into depression and talks of suicide.
I am getting lost in the messages and wonder what you think about taking him home, putting him into the program designed for people like him ( apparently ) and when  I am informed by the Dr. that he is no longer suitable for their program then put him back into the home. The kids think that it would mean he would have to go though the settling in process again as he wouldn't remember being there and that it is the wrong move. What in the world do I do?

Answer
Hi Suzann, I know it is very hard to do, but hang in there. It is early days yet. It will take a while for him to adjust, and for the doctors to find the right medications and doses to help your husband feel calmer and happier.

What you are seeing COULD be a side effect of the respiridone (also called risperdal). Stand your ground with the doctor if this does not improve in the coming weeks. Increased anxiety IS a recognized side effect that some people get from this medication. You know your husband best. If things don't improve fast, ask to have them STOP the haldol and respiridone and try something else - I'd start with  citalopram. They have nothing to lose by trying other approaches and everything to gain.

Here is some good information about the various drug options
http://www.aolhealth.com/alzheimers/learn-about-it/the-search-for-therapies/medi...  

Settling into a new living situation can be a massive adjustment for a person with an injured brain. Expect it to take some time - heck, if I even moved house, I know I wouldn't feel settled in and comfortable in my new place in just five weeks. He has a lot of new routines to adjust to, as well as new people, different surroundings, different food, different activities. It may be a change from his previous life, but that doesn't mean it's a bad change.  Having bustle and new people around may be something he eventually comes to enjoy. It is very easy to get isolated at in ah home environment, especially as the care burden grows on a caregiver like yourself. I know the adjustment can be very upsetting to watch. Most experts say 2 - 6 months is about average for a person like your husband to adjust - and given that he is currently on some new meds that seem to be making him feel worse rather than better, it might even be a bit longer.

If the doctor is not willing to work with you, it may be that he is the wrong doctor - are there other doctors who work out of the facility who might be more sympathetic and willing to listen and try different things? If not, are there other facilities available to you ? This might just be the wrong one. Ask for a discussion with the director of care and share your concerns with him or her. Don't be intimidated. You are on the expert on your husband, not them. You will feel better once things start to turn around for him.

Give the doctor and the facility some time to figure this out with your help and guidance. Expect that it will take some time for you to feel better about his placement. I know you feel so responsible for him, and it will take time for you to relax and let go of some of that. You need to be kind to yourself and you need some time for yourself. After caregiving full time, it will take a while to get some of your former life back. It does sound like the caregiving was taking its toll on you. It won't help him at all if you get sick and worn out trying to cope. I think you did the right thing placing him when you did. Don't torture yourself - you are dealing with so many emotions. Your children wouldn't be telling you to hang in there if they didn't see how worn out you are. They are just as worried about you as about their dad.

Lots of caregivers sometimes feel that they should be able to continue caring for their family members in the home no matter how difficult the situation is - and it's very hard on spouses because of the vows you made to care "until death do us part." It is difficult to let go of these guilt feelings because there is a sense of abandoning someone. You have to remind yourself what went into making the decision to place him. I know your whole family must have been involved in the decision, weighing all the pros and cons. It is okay to have a deep and profound regret that things got to this place, but you didn't make this situation. Guilt is saying we did something wrong, regret is sorrow that there was a situation that made this decision necessary. You should not feel guilty. This wasn't your fault.   

Hope this helps. I'm thinking of you.

Mary