My husband flatly refuses home care. How do I handle this?

Somethingelsa, your husband's dementia is "too bad" for you to care for him without help.

I was able to keep my husband home with me for the full 10-year dementia journey, but NOT without help! If you don't get some help, I predict the length of time you and he can stay at home together will be shortened.

My husband did not want to go to a day program. When he was in a "good" cognitive period I explained to him that I was doing everything possible so that he could stay at home with me, and he had to do his part, too. I needed times I could count on for my own appointments and to go into the office for meetings (I worked from home.) He claimed that he didn't need a "baby sitter" and I could just leave him alone when I needed to go out. I told him I knew that HE didn't need a babysitter, but since we never knew when that darn Lewy would act up (he had Lewy Body Dementia) and someone needed to be around to help out then. He went, for my sake. I think it was very good for him as well, but I didn't expect him to admit that.

After a few years he needed more one-on-one care than the program could provide and then we had a personal care attendant in the home 32 hours a week. I explained to him that she was there to help me, so I could do my work at home and support us. He loved her! She did puzzles with him, and watched a little television with him, and did his exercises with him, took him for walks in his wheel chair, and best of all from his perspective, "she's not as bossy as you."

I was fortunate in that my husband knew his diagnosis and understood that it sometimes caused problems for him. He also had periods when he could be reasoned with. I don't know if any of this is true for your husband.

But I do know this. You cannot long endure being a prisoner in your own home. You are a unique and worthwhile individual. You deserve to preserve your health for your own sake. In addition to that basic truth, if you burn out, what will happen to your husband?

Arrange times when you are not doing hands-on care for your husband.

I agree with SueC that discussing these issues with his doctor would be a good first step.

Please, take care of yourself! Come back here often, but I hope you don't come on the Burned Out topic!

Elsa,
I think you are in denial.
You wrote, "My husband has Alzheimer's but it's not too bad." 

If you had to quit work, monitor his actions around the house, he can't tolerate waiting, gets irritable and angry, it is "bad".  His actions, even though they aren't his fault, leave you a prisioner in your own home.

It sounds like he would benefit from some medication intervention that his doctor or geri-neurologist could prescribe. Has he seen a doctor lately?

Also, would he be receptive to a "day care" program? They have them for people with dementia so the caregiver can get to their own appointments. They are familiar with handling seniors with difficult behaviors.

Also, start bringing in a couple of people (maybe members from your church or any organization you belong to) once a week WHILE YOU'RE THERE. This will get him used to them and he'd be more receptive staying with them when you're gone.

If you don't find a way to break away from his grip, your health will suffer. His Alzheimer's will progress and you may get sicker and sicker. Who will watch out for him then?  Call his doctor and schedule and appointment soon.

You should also read about the different stages of Alzheimer's so you'll be prepared for what's coming next. Do you have a plan in place when you won't be able to care for him anymore?
Do you qualify for Medicaid (to pay for a nursing home in the future)? There is much to learn and much to plan for.

Good luck and God bless you both.

I appreciate all your helpful responses and I know you are all correct in that I do need a little help . When I say he isn’t bad I don’t believe I’m in denial about his disease I just know that there are so many much worse off than he is at this point. He does see his Doctors and is on meds but seems to be able to put on quite an act for them and they feel his disease is progressing but slowly . They do consider what I tell them as well tho and have added some medication . I think the fact that I am finally posting also shows that he is getting worse and I am becoming aware of issues that I am going to have to deal with . Thank you all . You have helped .

You would not ask a 5 year old if they would tolerate a baby-sitter so stop asking him for permission to do things - hubby won't physically remove your helper so the worst is that he will be grumpy which you probably are used too by now - bring in whatever help you need as a matter of course & if hubby says anything then tell him it is for you

Start by having a regular time for someone to come, maybe a cleaning lady to ease your work load as then he would see that they are helping YOU - hire someone who will be okay with you popping off the grocery store while you're 'covered' - after a short while he will be used to another person around & you could have someone for example : every Wed morning or Thurs afternoon so that you can get out for your appointments etc & go out regularly even if only to the hairdresser because you will be rejuvenated for the break thus be a better caretaker for him

Dear Somethingelsa,

I know you are doing the best you can, but its a lot for one person to take on. I know how much we don't want to upset the person we are taking care of but sometimes we have to put our foot down for their own safety.

I wonder if you can have the doctor or social worker talk to him. Sometimes our loved ones respond better to others. I hope you are able to make it to your own doctor appointments.

Im in the exact same spot.He is 67 its been 5 years now Dementia and Parkinsonism I gave up my job too. Mine i don't feel is so bad [moderate]and slowly down hill. He is good i think with idea of someone coming in problem for us i cant get the help or support of V.A.They say there helping been waiting 6 months for the help we need to say were in denial is wrong in a way .When you live with it everyday and some days seem semi normal [new normal] Were glad for that and like everyone i've lost in my family when my brother was dyeing had 30 days to live you know it but some days you have to have hope and be strong for them .I would go home some days and think maybe he will pull through as hospice says part of the process, But who is strong for us? I feel like a prisoner since i got done work and have all the house indoors and out to do hard to get help on the sticks .Sorry this is actually first time i've ever posted anything , Im with ya God with us, and WE have to have hope someone will help they like, We took care of my father -in -law 5 years and when it gets to certain point you have to be firm i need to take care of myself to take care of you and your going to have someone here in a nice way .[end of discussion like kids] , Sorry i'm venting .In reality the answer the women just gave you having people there to get to know them first and that they will click with especially if they talk about something he loved to do or watch baseball etc ,My husband when he doesn't know what to say to family visit he'll say How about those Jet's LOL Take Care

I think its a great idea to say they are there to help you or you too. They can do some house work and put something on to cook for you and watch him . Let him help pick someone out . . The truth is , as long as you can afford it you may have to insist. Tell him its for your peace of mind.. if that helps .. but do it

Elsa,
I did not mean to offend you. I apologize if my words were offensive. Each of us becomes familiar and "comfortable" with the stage of dementia our loved one is in. That same stage can be overwhelming to others. Sometimes it's hard to see the forest for the trees.

The fact that your husband has to be monitored says (to me) that you need help in caring for him. Yes, he may not be "as bad" as other dementia suffers that you know, but he sounds incapable of staying by himself. That means YOU need assistance.

If I were you, I would take any and all opportunities to get him used to others. As cdnreader mentioned, sometimes YOU have to take the lead and tell him what will be best for them (and you). Like jeanne said, blame it on the fact YOU need more help around the house. Dementia suffers are often aware that "something" isn't right with them and they try to hide it. It's embarrassing to think that someone needs to take care of them. If you blame it on your need for help, you'll probably have more of his cooperation.

Again, I'm sorry if I offended you.

My Dad would bit accept any help. Got carers but made up stories about how hopeless they were so I would agree to get rid of them .I did not but he told them he did not need help so they were coming in for nothing. Refused day care. Got social work to speak to him. Still refused. Got mental health doctor to speak to him. He said he was hopeless and did not know his job and he done nothing for him. He eventually got admitted to hospital for a bowel complaint. I decided then I needed to look after me. After much negotiation got him into care. He put on a great act in hospital but social work,his doctor and mental health team put in their perception of the way it was. He s still in care but says he's going home. Not!!

My answer is easy, but hard to do. Remember, your husband needs care. You are the responsible one. So, it's your decision to bring in help. It's nice you've discussed it, but it's your decision. Just because you married him, it doesn't mean that you have to do everything he wants. I've known spouses who imperil themselves by giving up decision making to the impaired spouse. As a result they don't bring in help, and I remember from an old statistic I've remembered a long time. About 50% of the time the healthy spouse, dies first.