For those who care for someone with Parkinson's disease
[Home] [Forum] [Help] [Search] [Register] [Login] [Donate]
You are not logged in


Topic When did you know it was time for a nursing home? Go to previous topic Go to next topic Go to higher level

By ann On 2010.01.30 17:17
My dad is 72 had has had Parkinson's disease for 26 years. Things have really fallen apart since September 2009. He has delusions of spousal infidelity-and is constantly accusing my mom and finding the most ridiculous evidence to prove this is happening. He has been on seroquel which just aggravated all the parkinson's symptoms- and the delusions persisted. He was in a psych ward for 12 days and they were able to get him kind of normal- getting rid of the seroquel and increasing the ativan he has been on for 26 years- and decreasing the other medications. His sleeping habits have changed and it is just miserable to be around him. We were not prepared for all the psychiatric symptoms of parkinson's disease so we have been trying to deal with side of the disease. When do you know that he is unable to stay home anymore and needs to be moved to a facility? From what I have read and seen, there does not seem to be much we can do about the delusions. Any insight would be greatly appreciated.

By annwood On 2010.01.31 14:11
Hi, Ann

Sorry that you are having so much trouble. If it is any consolation what you describe is experienced by many of us who have cared for PD pts with dementia. By now I am sure that you have figured out that it does absolutely no good to try to talk him out of his dellusions - a total waste of time and energy. The best you can do is attempt to divert his attention to something else. I once lived for a week with my husband in a dellusional state where he thought that we were in an experiment at a university and they had duplicated all aspects of our home down to our clothing. He thought that I was having affairs with the roofers, the painter, my son in law, etc. He would sit and cry about it usually in front of the person. Like you, we tried about every combination of psychotropic drugs. They would help for a week or so and then we were back to square one. It is mentally and physically draining on all concerned. I am an RN and I too was not prepared for the psychiatric issues. Docs have a way of not letting you know that this can be an issue. It happens about 50% of the time with PD. You can find that info on the internet but not your physician's office. Yes, I am still bitter.

I believe strongly that you have to consider placement when safety becomes and issue or when the caregivers just can't handle it anymore. We sometimes become so consumed in the issue that we fail to step back and look at it critically. You and your mother have a right to a life also. I think we sometimes feel like a failure when we elect to place our loved one in a nursing facility. Try to work through that if you can. I don't think the perosn with far advanced dementia knows if he is at home or in a nursing home. In my husband's case he thought that he was at the hospital, delivering babies, and giving lectures. He would actually give medical lectures at meal time. Told me it was the best group of student he had ever had. He was finally dismissed from the facility because of his behavior. He wanted to do physicals on the female patients and he kept tring to get off the floor because he had to go to the OR. I brought him home, hired part time nursing and he died four months later.

If you make the decision to place your father there will be some issue. He will resist going - remember he isn't thinking clearly. No matter how good the facility he will not receive him meds on time so don't even attempt to fight that battle. They are allotted an hour either way on meds and don't seem willing to accomodate specific times. They start at room 101 and work down the line. He will have the physician for that particular facility and the neurologist is only permitted to make recommendations. Don't argue with this physician - it will get you no where and may actually make things worse. Recognize that you and your mom may be at the end of your rope with this. Accept that and go on. You can spend quality time with your dad at a facility. I think you have to develop a mind set that says your father has a progessive, INCURABLE, neurological disease and there is very little that you can do to alter the course of the disease it it's later stages. We spend years trying to tweak meds and make the symptoms lessen but there comes a time when it doesn't really matter. Tough medicine to take, I know.

Stay with us. Ihope that this hasn't been to cynical. I will help if I can.

By hubb On 2010.01.31 16:11
When I see Annwood's messages, I know there will be something of interest that is succinctly written and understandable and something that is very helpful. We know you have been thru it all and survived and that gives all of us hope. Thank you for sharing all your experiences with us - know it's not easy - but do know that you are truly appreciated.

By annwood On 2010.01.31 17:58
Thank you, Hubb. You made my day! I do try to interject my thoughts when I think they can be helpful. I try not to talk about just how bad it can be because 50% of you won't have it that way and the early stage people often aren't ready to hear it.

I am doing very well. You do survive this and life does go on. I miss my husband and like childbirth your mind lets you forget just how bad it was. These days I am able to remember my husband as the man I fell in love with and with whom I spent 22 out of 24 wonderful years. I always knew that he would have NEVER wanted to be the way he became. It just wasn't him at the end. I did much of my grieving the last two years of his life as he slowly (or rapidly) slipped away from relality. We all have to die but some of us hopefully will go more peacefully.

By lynn On 2010.02.07 09:20
I placed my husband last October. For me, it was time when I didn't have time to do anything else except be close to him because he was falling and whatever I asked him to do, he did the opposite because he didn't understand. My family said I waited too long. In retrospect, I did but didn't realize it. Things just begin to add up and I think you're on autopilot so you don't see when it's time. The facility he's in is great with med times and they are so good to him. I know this is the exception but you need to look at the whole picture including you and your mother. Your priorities change in the later stages of this disease. I'm O.K. with med times slipping. It doesn't have an impact on him like earlier in the disease because I don't think the meds help much anymore.


© 2003-2017 MyParkinsons.org · Privacy Policy & Terms of Use
Published by jAess Media. This website and Forum is sponsorsed by people like you