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How old and you and your husband? How long has he had dementia? What is his current level of functioning? For example, what activities does he need help with -- dressing, baths, eating, etc? What is his memory like? These questions are not just being nosey, but will help us get a better picture of the situation.

I imagine by "lose everything" you are referring to applying for Medicaid, and the spenddown process. You don't exactly lose everything, but I would say that Medicaid is hard on married couples, where one will stay in the community and the other be in long term care. Still, it may be the best option. Don't rule it out until you have explored all your options.

Depending on his level of functioning and your relationship, it may be preferrable to care for him at home as long as you can, regardless of the financial considerations. But even to do that you may be better off on Medicaid, to get help for in-home care.

I suggest you talk to a social worker from Social Services in your county, who can explain options and programs available. And then, especially if you are considering Medicaid, talk to an attorney who specializes in elder law, to protect what assets you can.

Dementia is progressive. For many people the time will come when in-home care is just not feasible, especially for a single individual such as a spouse. When dementia is part of the picture, it is always a good idea to face the "what if" a nursing home is required in the future.

I have been caring for my husband with dementia for 9 years, at home. I hope I can continue to do that until he dies, but I haven't promised that because I will always want the best care for him, and someday I might not be able to provide it.

In the beginning the social worker advised me to see an elder law attorney, and to apply for medicaid and a program called elderly waiver. I did. We have a pretty high monthly spenddown (kind of a co-pay or deductible), but things like drugs, equipment, hospitalizations, therapists, a day program and now a personal care attendant, are covered. I applied thinking he might soon need a nursing home, but he surprised us all and has remained stable. But Medicaid turned out to be a very useful program even for in-home care.

To find out the specific help you can get, call your Social Services department.

Good luck!
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Jeane your answer was very good and will point her in the right direction.
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Remembering, unless you are super-human, I doubt that you can totally avoid being hurt sometimes by the mean remarks a loved one with dementia can make. If you figure out how, let the rest of us know!

We just started our tenth year of living with Lewy Body Dementia. Here are some things that have helped me:

I remind myself as often as necessary the true source of the comments. "It is the disease talking" has become my mantra.

I acknowledge the feelings behind the comments. "Oh Honey, I am so sorry you are feeling like you're on the bottom of my priority list today. Overall you are absolutely at the top of my list, and most days I can act that way. Today I just had so many problems and things to tend to that I'm afraid I neglected you. I am so sorry. Can I have another chance starting now?" (I would say this even if I've spent the entire day doing nothing but caring for him. I try to get into his reality and not to worry about defending the Truth.)

The hardest for me was a period of paranoia, when he'd accuse me of stealing his money, or of holding him prisoner. ("Sweetheart, it must be awful to not know where our money is going and to worry about it. Let me get you our bank statements for the last few months, and when you have questions about things I'll see if I can explain it to you." He'd study the paperwork without any comprehension at all, but at least seemed someone mollified that he was given the "facts".)

I belong to a local caregivers' support group, so I learned that other people deal with this, too. Not feeling alone helps.

I have read a great deal about the kind of dementia my husband has, and about dementia in general. Knowing what to expect helps me to not take it persoanlly.

This is a very, very tough role we play. I try not to beat myself up when I don't do it perfectly. Tomorrow I'll have another chance to get it right!
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Bonnie, you write:
If I don't get the Doctors to address the anger issues, I will not bring him home again.
and
I just have to bring him home again - I couldn't think of living without him.

I can understand both statements! The first is common sense. You cannot live safely with a strong adult who has uncontrolled anger issues. The second is emotion and wishful thinking. Emotion is perfectly valid in a marriage! It would be awful to be married to someone you had no emotional attachment to.

But I want to assure you that you can and will live without your dear husband living in the same house. Dementia is a terminal condition. It ends in death. And perhaps more relevant, dementia robs people of their personalities ... they leave us piece by piece even before they die. This disease is horrible.

How do we caregiving spouses survive it? I don't know! But most of us do, more or less intact. My husband died after 10 years of dementia. That was nearly 4 years ago. I assure you that you, too, have the inner strength and resources to go on without your husband physically present in your home. In part the love you shared and the memories you created before this horrible disease will sustain you.
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vstefans, Thanks you for your caring words. My husband (of 52 years) is now in a very good Gerry-Psych Hospital and receiving excellent care. I have not visited him yet, but have talked with him on the phone. He says he loves and misses me. He needs the help he can get there. With God willing, I will bring him home soon if they get the anger issues under control for awhile. I take each day at a time, and know noting is going to be the way I thought retirement would be. at least he is still here and I can tell him how much I love him. I know there will come a day when he will no longer know me, but for now,,,,,
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Oh, Bonnie! How sad. You must be so torn up inside.

One of my Uncles had Alzheimers and was quite combative, until the right drug cocktail was found. He lived out his last years in a VA home, singing along with the piano and occasionally revisited the battles of the Pacific Theater with other Vets, and by that I mean that they thought they were actaully back on the Burma Road. Butbthey DID find the right combo and he WAS able to go to a NH. Take heart dear, and let us know how this goes. Godspeed!
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Bon, you clearly love your hubby. If coming home again just means more distress for him, let him stay somewhere where he can believe is is staying in order to get better instead of believing such ill things of you and losing faith in your care for him. I know it is tearing you up but the living without him part is happening, despite how badly you wish it wasn't. It sounds like you are going to have to reach inside and find strengths you did not know you had to cope with this and be there for him in any way you realistically can, while missing the way things were, with someone you could depend on. My heart and prayers are with you. This business is hard enough when it is a parent (and you HAVE a spouse who supports or at least does not sabotage!), and I think it is about double when it is a spouse and you have only you....
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Babalou, I wanted to write you this. Today when I was with Bill in the hospital, he turned to me and said, "We need to make a sign on a stick that says "LET'S BEAT ALZHEIMER'S". Then he cried and I cried with him and held him. So very sad how much he is suffering inside. He knows he is going to this dreadful disease. The Doctpr on his case is now looking to place him in a Gerry-psych hospital for further psychiatric treatment and help getting him on meds for the behavior. He is talking to the administrators of two that may be able to take him in the area. Then the plan is that he could go to a nursing home for rehab and possibly home. No nursing homes would even take him because he had been on one-on-one. In other words, there is no place for a combative Alzheimer's person - just out them out to pasture. Pray for us. Bonnie O.
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How do you not feel hurt when you husband says things that are mean?
Ex: You don't understand or listen to me. I'm at the bottom of your list of priorities.
If I try to discuss the issues, he gets more upset. Then of course the next day he does not remember anything at all.
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I visited my husband today in the hospital, and he was so confused and upset. He has elevated creatine levels and was dehydrated, so that might have contributed to his aggression. He kept crying and asking me to call his Mother( who had passed twenty years ago). When I kept telling him I couldn't get her on the phone, and that she was in a better place now and that she was with him in spirit, he just got more upset with me and kept asking over and over for me to call her. He went to the bathroom (with an aide helping) and when he came out, he grabbed a pair of scissors from the sink area, and said he wanted to go to jail. Then I went to get help, and he said "If you leave, I'll stab you 16 times". The Nurse called in a code green and Police Guards came up to get the scissors from him. II now know that it will never be safe to bring him home again, and I do not want to live without him. This apartment is foreign without him in his chair beside me. I cannot go on much longer. Please Help! Bonnie O.
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