After over 50 years of shared companionship and freedom to travel, my husband has been confined to long term care. And, no matter how one tries to rationalize the need for him to be there, it is confinement. He is a prisoner in a bleak environment with minimal, if any, mental or emotional stimulation. Taking him out for an excursion is constrained due to mobility problems, and it is heartbreaking to have to bring him back while he is saying he wants to go home.

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P.S. Since you are new to dementia/caregiving/managed care & the forum,
I suggest you read this 33 page booklet (a free download) which has THE best information ever about managing dementia and what to expect with an elder who's been diagnosed with it.

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Jennifer is a nurse who worked for many years as an educator and counsellor for people with dementia and their families, as well as others in caring roles. She addresses the emotional and grief issues in the contexts in which they arise for families living with dementia. The reviews for her books are phenomenal b/c they are written in plain English & very easy to read/understand. Her writings have been VERY helpful for me.

The full copy of her book is available here:

She also has published a workbook entitled, “It Isn’t Common Sense: Interacting with People Who Have Memory Loss Due to Dementia.”


Thank you for sharing your thoughts. It was very helpful. I do not benefit as much from counselling or a support group as I do from forums such as this one. Only when I am writing am I able to express what is bothering me, and only when other people write do I get the full benefit of their own experiences, advice, and caring. Thank you to all who responded. Each one offered something of value to me.

Guilt, grief, depression are all difficult emotions and conditions to deal with.

There’s no protection from grief; it’s a natural emotion that comes with the loss of a loved one. In your case, not the physical loss of your husband, but the loss of his companionship, your interdependence on one another, the intimacy, the loss of your dreams for the future. You’re right, it is heart breaking. It's tough. But it’s something you have to deal with.

You have more control over your guilt than your depression and grief. Your guilt is why? Not being able to continue to care for him at home? Not finding a better place for him? His confinement? Caring for a LO with Parkinsons and dementia is a double whammy that eventually would become hopelessly unmanageable for you. Sometimes, and maybe most times, we have unrealistic expectations of just how long and to what extent we can care for our LO. We set ourselves up for these overwhelming emotions when we realize we can no longer care for our LO at home. We all have our caregiving limitations. The trick is to recognize when you’ve reached yours. None of us are superheroes. You’ve made heroic sacrifices by caring for him at home. By placing him in a care facility that understands his disease(s), please realize that you are STILL caring for him.

Even though your husband is at a care facility, you still have to take care of yourself. You don’t say where you are from; is there a support group near you? There are many. To locate one go to the Parkinson’ website. Also try contacting the Alzheimer’s Assn to see what they have. “Getting to The Other Side of Grief- Overcoming the Loss of a Spouse” by Susan Zonnebelt-Smeenge, is a great book that can help you understand and deal with your sadness. Although you haven’t physically lost your husband, you have lost the relationships I already mentioned. The book can help.

There are no meds for guilt or grief, but there are for depression. A good psychologist/psychiatrist can help you with all of these. Please seek their consult.

I wish you well.

When dementia and mobility issues strike a loved one, and placement is the only reasonable answer, it's STILL a sad outcome for you and for your husband. Nobody wants this; to be burdened down with illness and a loss of independence. But that's what happens to some of us as we age.

You say DH is 'confined' in his nursing home. Would he not be 'confined' at home as well? Mobility issues suggest he's not able to move around on his own, no matter where he lives. Same as my father; once he became wheelchair bound, it didn't matter if he lived in his apartment or in Assisted Living; he was still confined to his wheelchair which frustrated him to no end. He couldn't walk when and where he wanted to, and THAT was the issue more than anything else.

When my mother's dementia progressed to the point where she became immobile and also had to go into a wheelchair, she too became confined. She hated that w/c with all of her heart, and the fact that she needed help with absolutely EVERYTHING in her daily routine. She went from being an independent and feisty person into a shell of her former self, being helped in and out of bed and to the toilet. She hated that, and then could not figure out WHY all this was happening to her, b/c dementia prevented that understanding from seeping into her mind.

A Catch-22. For me, too, b/c I had no other choice BUT to place her in Memory Care Assisted Living, transferring her from the freedom she enjoyed in her apartment in regular AL and over to the 'prison-like' Memory Care. But it wasn't a bleak environment with no mental or emotional stimulation. I decorated her room the same as it was in Assisted Living, with beautiful art work and an iron bedframe with a lively bedspread, etc. The Activities Director made sure to get mom up and about every day and into the main room to participate in the daily goings on at the MC. That was key; her participation in the happenings and hanging out with the other residents. If your DH is stranded alone in his room all day, get that issue handled with the administration. He should be taken out of his room and socialized on a daily basis.

The vast majority of dementia sufferers want 'to go home' and that makes it a lot harder for US to deal with the matter, emotionally. Regardless that 'home' is not necessarily a brick and mortar bldg anymore but a place in time that's long gone, it still tugs at our heartstrings to be told they 'want to go home' all the time. That, for me, was the worst part of the whole scenario with mom. Then she progressed to the point where she thought the MC was a 'hotel' and the 'girls' were taking her to a new and different 'hotel' every night and couldn't understand HOW all her things got to the new 'hotel', how did that happen?
So at some point down the road, your DH may also decide to 'rearrange' his living conditions (mentally) to suit him, I don't know.

I do know that sometimes in life we have no choice. DH had no choice about his diagnosis, and you had no choice about his placement. You're not The Bad Guy here, his CONDITION is The Bad Guy and at fault, nobody and nothing else. You do the best you can, he does the best he can, and you take things one day at a time. With God's help, he adjusts and you adjust. And if you don't, you ask for help in terms of therapy so that TWO lives are not irrevocably ruined by one diagnosis. Your life matters too.

Wishing you the best of luck with a difficult situation.

I so agree with Barb's comments. Especially about changing out your G-words. Guilt assumes you are responsible for this, that it happened and to remedy it. You didn't cause this and can't cure it and watching you husband's sad decline is something you can't fix. It is the very definition of GRIEF. Not guilt.
Please seek help. There have been three times in my 80 years I have gone to a therapist when I was in dire straits. Each time was such a mercy to me, and I was so helped.
I am so dreadfully sorry this happened to your husband. I can offer sympathy, but you honestly need so much more than that to help you out. This falls under the huge list of things that cannot be fixed, must be lived with, and hopefully lived with in a way that doesn't sacrifice to this dreadful disease TWO lives for the price of one.
My heart goes out to you.

While you say you are feeling guilt, I suspect you are actually feeling grief.

Survivor's guilt--the guilt of the well partner--is common, but I find that often, the caregiver feels palpable anticipatory grief that their partner can no longer share in former joys.

Can you make his room as "homey" as possible, with family pictures, seasonal decorations and such? My SIL had a brilliant idea and typed up a brief precis of mom's life, including the fact that she'd gone back to college at age 62. It gave the aides a better idea of who mom was in her former life, and something to chat about.

In terms of depression, you need to look into and take care of that. Have you have a complete checkup lately? Talked to your doctor about this? Finding an understanding therapist, getting some help via meds could help and will help your husband too.

Please stick around and update us. We care!

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