This is the time you make decisions in both his and your best interests as he’s lost the ability to do so. Don’t discuss, plead, or try to rationally explain. Whether you choose to use an adult day program, respite care, or realize that perhaps his needs have exceeded your abilities in your home, these decisions are yours alone now. If you ever feel threatened or unsafe call 911 and have him transported to the hospital for further treatment to calm him. Possible options can be discussed from there. Above all, know your health, mental, physical and emotional matters too
My wife has Parkinson's and dementia. What a horrible combination. It is hard enough, I can't imagine it being reversed with the husband the one with these diseases and me being the wife. Just for the intimidation factor. One lesson I have learned is don't try to force a person with dementia to do something they don't want to do unless there is an immediate safety issue. I tried several day activity centers, one specifically for dementia patients. She went a few times but the last time I tried to get her to go she tried to exit the car while we were on the expressway going about 45. My plan is to keep her home until the very end, which might not be possible if she were bigger than me, if for no other reason than to help transport her. I try to imagine what it is like being in her mind, not knowing where I am most of the time, and being very scared. But yes, I make all her decisions and had the legal documents completed while she could still sign them. She has lived here 50 years but constantly wants to go home. She lives with a lot of pain from her back surgery for scoliosis and the pain many feel from Parkinson's, and when she wants to go home it is often to escape the pain. This care-giving stuff isn't for sissies, for sure. (I refuse to use the new woke term, care-partners.)
Parkinson's and dementia will only get worse over time. My thought is to place him in a facility. Then you may see him as his wife instead of his caregiver.
He needs to go to a care facility. He's past the place where he can be cared for at home. You've tried your best, but he can't get better, and he needs professionals to care for him now.
I hope you have his POA because that will help you to place him.
We all think of moving a sick person out of the home as a big decision. It is. But in another sense, it isn't. Once their illness as caused them to cross a line, which it appears that your husband has, they must go somewhere else. Demanding and uncooperative is one of those lines. Fecal incontinence is another. The possibility of a demented person causing physical harm is another. Wandering is another. Etc. etc.
Right now, start looking at likely places for him to go. Then make sure he gets there. Your husband, being demanding and uncooperative, may be a worst-case scenario in terms of putting up a fight to stay home where he can badger and exhaust you even more. Stay strong and save yourself. I wish you luck in this unfortunate situation.
Placing my husband with Alzheimers in a nursing home, was the hardest thing I ever did in my life, and I thought I would not be able to handle that. Harder than sayijng good bye to him as he boarded a plane for Vietnam. Wrong. I did well. When my husband got to the stage when he would leave the house to take a walk, I realized he could in fact get killed by an oncoming car. We lived a block or so away from a well traveled city street with traffic lights. I followed him one day and found he did not give the right away by foot to oncoming traffic. He could have been KILLED. That was the trigger that I knew he had to be placed in memory care. He started to leave the apartment/house several times a day, we lived just a few feet from a busy state road, well traveled, all day long, and again during morning and evening rush hours of people going to and from work in their autos. Only a few feet from this busy road. I wondered what I would do if he got killed trying to take HIS right away on foot to cross the street. I also knew that if anything happened to him in this way, the authorities could hold ME responsible for his well being. What would the State do to me? Believe me, a caregiver cannot keep two eyes on a demented person who leaves the house or apartment. THAT WAS MY FIRST CLUE THAT I MUST LOOK INTO IMMEDIATE PLACEMENT IN A FACILITY WHERE HE WOULD BE SAFE. OH, YES, IT IS EXPENSIVE. BUT, I did it. So can you . Think in terms of What If---. I would have on coming car, OR got accosted by someone wanting his money. I made sure he only had $1.00 in his pocket and his name and address in his pocket. BE STRONG, PEOPLE. THINK OF THE WHAT IF.
The only thing that worked for me was moving my husband to a facility. I couldn't get anything done when he was home, as he sat in the living room and made constant demands on me.
If your husband is on Medicare he can qualify for up to two weeks respite stay in a care facility if you need to take a break. His secondary insurance will pay the rest of the expense.
Whether he is cooperative or not really isn't important if he has dementia and is no longer caring for himself or mentally able to make decisions on his own.
You are the important one in this equasion because if something happens to you, what happens to him?
He gets permanently placed in a nursing home for the rest of his life whether he's cooperative or not.
You need a rest from him. Please contact Medicare and ask if he qualifies for a respite stay in a nursing home. Then while he's there, you can take a break and take time to think things over like whether or not you want to continue being his caregiver and having him home.
If you want to keep him home and continue caregiving, check out adult daycare for him and also homecare to help you. No one should have to handle all the caregiving for a person with Parkinson's and dementia all on their own.
Fawnby is probably right that he needs to move to a care facility. If you think it’s not yet time, you could look for an adult day care centre that he could visit during the week – that’s if they will take him with his behavioral issues, and if you can get him there. That, or perhaps hiring a carer for a few hours, might give you the break you are looking for.
In terms of ‘demanding and unco-operative’, it’s worth reconsidering how you are dealing with that. If you comply with the demands and plead for co-operation, you are probably making the behaviors worse – because he gets what he wants and feels in control. It makes ‘home care’ far and away his most attractive option. If you can harden your heart and ignore it, he may be less keen to stay at home. Drop down your ‘help’, and talk up the benefits of care – lots of staff to give him attention, activities organised just for him etc etc. Ear plugs may help you walk away from the demands. Telling him how hard it is for YOU is not likely to make any difference.
Depending on his level of awareness and short term memory, he may be unable to really grasp your requests or explanations. And he may forget or reject what you told him, like Groundhog Day. What I'm trying to say is that sometimes you need to make all of the decisions in his best interest, whether he cooperates or not. Whether that's medication to reduce his undesirable behaviors, a respite carer, a senior daycare, or permanent placement so he can benefit from professional care.
Take him to the Adult Daycare Center in your city. He can go up to 5 days a week and 8 hours a day. They will provide breakfast, lunch and a snack. Plus they offer all kinds of fun entertainment. Of course there is a cost involved, but if money is an issue, they do offer financial assistance. And I can only guess that just like a child, your husband will be much better behaved for others than he is for you. Otherwise you can hire aides to come sit with him for a few hours a few times a week. Or you can call your local Senior Services or your church to see if they have volunteers that can come sit with him so you can get out for a few hours to do things you enjoy. And of course if his care is getting to be just too much for you, you may have to start looking into placing him in the appropriate facility. Remember that you matter in this equation as well.
My plan is to keep her home until the very end, which might not be possible if she were bigger than me, if for no other reason than to help transport her.
I try to imagine what it is like being in her mind, not knowing where I am most of the time, and being very scared. But yes, I make all her decisions and had the legal documents completed while she could still sign them.
She has lived here 50 years but constantly wants to go home. She lives with a lot of pain from her back surgery for scoliosis and the pain many feel from Parkinson's, and when she wants to go home it is often to escape the pain.
This care-giving stuff isn't for sissies, for sure. (I refuse to use the new woke term, care-partners.)
I hope you have his POA because that will help you to place him.
We all think of moving a sick person out of the home as a big decision. It is. But in another sense, it isn't. Once their illness as caused them to cross a line, which it appears that your husband has, they must go somewhere else. Demanding and uncooperative is one of those lines. Fecal incontinence is another. The possibility of a demented person causing physical harm is another. Wandering is another. Etc. etc.
Right now, start looking at likely places for him to go. Then make sure he gets there. Your husband, being demanding and uncooperative, may be a worst-case scenario in terms of putting up a fight to stay home where he can badger and exhaust you even more. Stay strong and save yourself. I wish you luck in this unfortunate situation.
When my husband got to the stage when he would leave the house to take a walk, I realized he could in fact get killed by an oncoming car.
We lived a block or so away from a well traveled city street with traffic lights. I followed him one day and found he did not give the right away by foot to oncoming traffic. He could have been KILLED. That was the trigger that I knew he had to be placed in memory care. He started to leave the apartment/house several times a day, we lived just a few feet from a busy state road, well traveled, all day long, and again during morning and evening rush hours of people going to and from work in their autos. Only a few feet from this busy road. I wondered what I would do if he got killed trying to take HIS right away on foot to cross the street.
I also knew that if anything happened to him in this way, the authorities could hold ME responsible for his well being. What would the State do to me? Believe me, a caregiver cannot keep two eyes on a demented person who leaves the house or apartment.
THAT WAS MY FIRST CLUE THAT I MUST LOOK INTO IMMEDIATE PLACEMENT IN A FACILITY WHERE HE WOULD BE SAFE. OH, YES, IT IS EXPENSIVE. BUT, I did it. So can you . Think in terms of What If---. I would have on coming car, OR got accosted by someone wanting his money. I made sure he only had $1.00 in his pocket and his name and address in his pocket.
BE STRONG, PEOPLE. THINK OF THE WHAT IF.
You did the right thing. You loved your hsuband and wanted to keep him safe. The only way that could happen was if he was in a care facility.
Whether he is cooperative or not really isn't important if he has dementia and is no longer caring for himself or mentally able to make decisions on his own.
You are the important one in this equasion because if something happens to you, what happens to him?
He gets permanently placed in a nursing home for the rest of his life whether he's cooperative or not.
You need a rest from him. Please contact Medicare and ask if he qualifies for a respite stay in a nursing home. Then while he's there, you can take a break and take time to think things over like whether or not you want to continue being his caregiver and having him home.
If you want to keep him home and continue caregiving, check out adult daycare for him and also homecare to help you. No one should have to handle all the caregiving for a person with Parkinson's and dementia all on their own.
In terms of ‘demanding and unco-operative’, it’s worth reconsidering how you are dealing with that. If you comply with the demands and plead for co-operation, you are probably making the behaviors worse – because he gets what he wants and feels in control. It makes ‘home care’ far and away his most attractive option. If you can harden your heart and ignore it, he may be less keen to stay at home. Drop down your ‘help’, and talk up the benefits of care – lots of staff to give him attention, activities organised just for him etc etc. Ear plugs may help you walk away from the demands. Telling him how hard it is for YOU is not likely to make any difference.
Of course there is a cost involved, but if money is an issue, they do offer financial assistance.
And I can only guess that just like a child, your husband will be much better behaved for others than he is for you.
Otherwise you can hire aides to come sit with him for a few hours a few times a week. Or you can call your local Senior Services or your church to see if they have volunteers that can come sit with him so you can get out for a few hours to do things you enjoy.
And of course if his care is getting to be just too much for you, you may have to start looking into placing him in the appropriate facility.
Remember that you matter in this equation as well.
See All Answers