Jc45liberty, I’ll apologize now for the length of my post but before I read your screen name I honestly thought my mom had written your post as it sounds so much like my dad. He’s 81, has PD and moderate dementia, and tends to be very uncooperative with both me and my mom. He’s not nasty about it but we still feel dismissed, or belittled, when we ask/tell him to do something and he either just ignores us flat out/pretends to not hear us, or responds with “yup,” “you might be right,” or our favorite “hmm, i could do that” and then just sits there. Many days we have to talk to him like a child and sternly tell him to do this or that. Which of course we hate to do. Thankfully he’s a pretty laid back guy so at least he’s not as demanding as a lot of others in the same boat, but I know from my training that it WILL get worse over time. Others have suggested an adult day care center, or respite care, with which I strongly agree. Some day centers don’t even charge for the service but may ask for “donations” (money or supplies) to help cover costs. It’s definitely something to look into. I would also suggest in home care (which is what we are doing) just to get a break from the care side so that you can enjoy time as a family, or even to just get away for a few hours a couple days a week for some “me time.” And you don’t even have to leave the home while the caregiver is there if you don’t want. There are many great home health companies out there but I would encourage you to do a little research before you decide on one. Make sure they’re willing to do a free in-home assessment to discuss in depth what your husband needs and what they offer. You’re likely looking at around $30/hr depending on where you live but that seems to be a decent national average. And while yes, you could also put him in a facility, a) you may feel a lot of guilt every time you leave after seeing him, b) just because you have a POA does NOT mean that you can simply put him in a home if he’s made specific requirements in said POA, and c) it’s freaking expensive as most health insurances do NOT cover that fee unless the patient requires SKILLED care. Activities of Daily Living (ADL’s) are never a covered benefit, only help with a licensed nurse or therapist are covered. (i.e. wound care, administering IV medication, care of a tracheostomy, physical therapy, speech therapy, etc.) There are TONS of resources that you can tap into. Obviously the AgingCare site, but also check your state’s local aging and disability resource centers (ADRCs.) And if your husband is a veteran then check with them too, especially the “VA Aid and Attendance Benefit.” It can offer reimbursement for home health assistance. Whatever you decide, it may take some getting used to but you’ll know in your heart if it’s the right move for you or not.
You make excellent suggestions. I would just add that the VA Aid and Attendance benefit is only available i the veteran is already receiving VA payments. It’s like an add on benefit. I’m wrestling with Medicaid benefits and cannot decide if it is even worth pursuing. I believe we have too much income each month to even qualify no matter how much we “spend down” assets. Local NHs want $9k to $11k a month. All would be out of pocket by unless the rules against impoverishing the spouse would apply. It’s so depressing.
You can get a home care giver to come in for respite. It is often covered under insurance. Medicaid has some good programs. We have one here that is called IRIS. They will help you pay for the care giver of your choice as well as cover things needed in the home. They can also help cover outside activities for your husband including therapies that may not be covered by medicaid normally.
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.
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.
See if you qualify for hospice help. It’s not just for end of life. Medicare pays if you qualify. Contact your local Area on Aging Agency, they will get you contact for hospice eval.
My husband with dementia qualified for hospice here at home. They have a nurse once per wk to check vitals. They have a Certified Nursing Assistant (CNA) come 6 days per wk for bath, hair washing, bed changing. Then if you could hire someone 4-5 hrs per wk (or more depending on your finances) it would really take some weight off you. They do have some caregiver grants to offset cost of hired help…it varies by state, so again Area on Agnecy can help you apply for grants.
My mom has Kaiser only no Medicare or Medicaid. She was placed in palliative care by her kidney specialist because with her having Alzheimer they would not send her to dialysis. I was trying to get her pcp to refer her to homecare so they could check on her because the medications they had her on was in my opinion made her condition worse. Depakote Zoloft and trazodone made her very agitated not really sleeping. Then they increased Depakote and had her sleeping 22hrs a day. I had to stop all medications to see if that's the problem. It's been 6yrs she's lived with me and i took her to Kaiser to have her tested for dementia and was said to have Alzheimer. Fast forward 6yrs to now video visits from her pcp since the beginning of covid I asked her pcp to send a referral to home nurse to check on her and she tells me I need to bring her in. Impossible and her doctor knew that It was hard to get my mom up to make appointments. I then reached out to palliative care to see what there purpose was since my mom was referred to them last year. I told them that I feel my mom has declined worse since being on all those medications and sleeping 22 hrs a day sometimes. They referred her to hospice to see if she was at end of life. The intake worker came from a outside hospice to evaluate my mom based on what I was telling her she just started having me sign paper's. Which I later that night from a phone from there office welcoming us into hospice. I said I thought this was just to evaluate my mom. She told me that an RN would be coming out in the morning to see my mom. 3 people showed up without verifying that I was home. And I wasn't my husband was. I told them to come back later or the next day so I could be there. They came introduced themselves and asked alot of questions. Based on the videos I showed them of my mom's and her conversation that my mom wasn't ready for hospice. The social worker asked the RN and she said something about 6 words or less and my mom had way more then 6 words and still knew alot of things..So now they said most likely she wasn't ready for hospice because they were 6 months of less of life. Now they say the will evaluate her for 30-day because she has stage 4 kidney disease that I said was stable GFR 21 the last yr or so per the kidney doctor. The nurse will come out 2 times a week and a aid will come help clean her up. Oh i forgot to mention my mom is not eating much now either but the Zoloft was a medications that took her appetite away. So i decided to discontinue all the so called medications they had prescribed for agitation. They took my words of not listening to my wants from my mom as agitation. I said she was difficult to deal with because she didn't like taking baths and just flat out refuse to do what I asked her to do as agitation. I took me finding this group to make me understand the condition alot better and to step back and stop trying to force a person, my mom that has dementia to do anything she don't want to do. But bathing is something that I will force her to do. She refuses alot to get in the shower. I have to force that also when she just flat want get in the shower I had to find another way to clean her up. I refuse to have my house stinky when she still able to walk and talk a lot of mess to me the only person that's cares enough to help her and not let the state place her somewhere that would take her for the little income she get.
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.)
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.
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.
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.
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
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.
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.
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.
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.
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.
My husband with dementia qualified for hospice here at home. They have a nurse once per wk to check vitals. They have a Certified Nursing Assistant (CNA) come 6 days per wk for bath, hair washing, bed changing. Then if you could hire someone 4-5 hrs per wk (or more depending on your finances) it would really take some weight off you. They do have some caregiver grants to offset cost of hired help…it varies by state, so again Area on Agnecy can help you apply for grants.
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.)
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.
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.
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.