Next Steps Archive

Next Steps Archive
English: Immunohistochemical staining of Lewy ... English: Immunohistochemical staining of Lewy Neurites in a case of Lewy Body Dementia (DLB) (Photo credit: Wikipedia)

I hope this makes some sense because my thoughts and emotions are so scattered lately I feel like Hubby and I are in an emotional blender.

I've been avoiding, for the most part, the caregiving www.

I've struggled to support myself and Hubby and unless the support was "easy" to give and receive, I've remained silent.

Unless I was sure what to ask for or offer, I've remained silent.

To the majority of my family and friends, I've remained silent.

Now is the time to break the silence because the silence is breaking my heart.

Hubby has had some serious anger issues. Nothing physical, just verbal. And that's not really the problem since we have lived with his PTSD for our entire married life, I'm used to it. In the past, he could leave or I could suggest he leave and go someplace or I could until he cooled off. But now he feels trapped. Trapped by me, the Drs and his Lewy Body Dementia. He doesn't want to be here. He's mad at me, the Drs, his illness, the whole world.

If I was in his place, I would probably feel the same way.

He's also sad, very very lonely, frustrated and scared. All the things I wanted to prevent for him and have not succeeded in doing right now.

All I can do is watch as he fights with his emotions and listen as he vents his frustrations. Most directed at me and admittedly they hurt but I understand where they are coming from so I try my best to ignore the feelings that come because of his words.

What can we do? How can we fix this? We are maxed out on meds and some of my big fears are more would make him "drugged" something neither of us want. He's sick of taking pills anyway and I don't blame him.

He has had some very lucid moments and we have talked about his dementia, his feelings and a few of his fears. Then HE suggested that perhaps placement would be the best.

Oh my heart! I HATE Lewy Body Dementia. I hate that he can have these moments of clarity. I HATE that he realizes what is happening. I HATE HATE HATE IT!!!

At his suggestion, we have talked Nursing Home placement on several occasions. Sometimes he says he wants to leave, other times he says a Nursing Home is not where he wants to be, but he doesn't want to be here. Some times he says he doesn't want to be a burden. I've tried to assure him that he is not a burden, perhaps difficult at times but never a burden.

He and I have both spoken to our children about it.

I have to add that we are very blessed with the support that they offer us. They may not like the situation but they support whatever decisions needs to be made in the best interest of their father and me. How did I deserve such amazing gifts when I received them?

It took a long time to bring it up to them. Hubby and I both fought emotions about it. We've cried together and separately, I've prayed for and over him. I still fight back tears and it's taken a lot of emotional strength to put these words down. Even more when I hit the post button.

I've read more than once that it's never too early for placement when dementia is a concern. But it can come too late.

Late for the caregiver who is stretched beyond their capabilities and health. Late for the loved one who may do something that could potentially be life threatening to themselves or to others.

And if you're already talking about it, now is the time to make the move.

My head knows all of this, my lips and fingers have repeated it to others. My heart wont get on board.

I've tried to find things for Hubby to be engaged in yet he refuses. So, I wonder if a different environment and the company of other people would be in his best interest. At least that way he could refuse to participate or engage with someone other than me.

I'm sure it wouldn't help with how he feels about his illness, the Drs, the situation or me and all of his losses but perhaps with others he could "vent" to, it would help release some of his anger. Maybe he could deal with it better. I don't know the answers. I'm grasping anything I can to get even a small hold on a constantly slipping situation.

Neither of us have decided anything but Hubby wants to talk to a Dr about it. He has an appointment in a couple of weeks.

Confession: His wanting to do this feels like a bit of rejection of me but I have to shake that off and realize, this isn't about me, it's about what's best for him.

I did tell him if he wanted we could tour a facility and nothing had to be permanent so if he did go in and then decided wanted to go home, I would be loading him up and bringing him home.

Please say a prayer for us. We need clarity of mind and sure direction.

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{{{Hugs}}}, Kathy! You and Hubby are in my prayers.\r\nWhat strikes me is the love and honesty you and Hubby express with and for each other, through all the pain you are sharing. You are looking at all those alternatives together and are letting your hearts do the talking. And that is as right as it is raw.\r\nWe are here for you. Thank you for breaking your silence. I'm nodding at Jo's statement that sometimes there is no \"fix,\" there is just the best that we can do at any given moment. That is something that you and Hubby are working on together. It's also a new level of unknown (versus the familiar unknown), which makes it all the more scary. But your Love is still there.


Kathy, I could relate very much to your post. My wife and I kept asking the universe, how did this all happen. We still ask that question. We struggled through stages of my wife's medical problems to the point they became so severe, I could not manage them any more. I had to make the gut wrenching decision for nursing home placement as I was burned out, now out of work, dwindling finances, and other major stressors. We are both unhappy about having to go the route of a nursing home. We're working on dealing with grief and losses with each other, as well as, how do we make the best of our time together. So many other issues come up--a whole life's history. It's an on-going process (obviously). Each day has its joys and moments of sorrow. As caregivers, many of us oft-times feel overwhelmed, exhausted mixed with strength, courage, and perseverance. Just when I'm feeling the most down or am befuddled, thankfully God is a lamp to my feet and a strenght in my time of need. You and your husband are in my prayers.....Bob

Jo Rozier

Kathy,\r\n\r\nI read and reread your post, flagged it so I would come back to it after work, looked up the big words in my dictionary, took notes, even diagramed your sentences... ok, maybe not the last part :-)\r\n\r\nTHANK-YOU for breaking your silence. Silence is possibly our worse enemy as caregivers. This is simply is not a burden we can carry alone. It truly \"takes a village\" but we often have to ask for help.\r\n\r\nI'm going to go out on a limb and speak for Denise but I'm positive she would never want you (or any of us) to feel like posting here is a burden or obligation. If taking care of you has your bucket filled, just read or posts instead. The only negative thing that happens is that we worry about you if we haven't heard from you in awhile. \r\n\r\nI was struck by your commented about seeking a fix. This may be one of those occasions where a \"fix\" isn't the right goal, just isn't possible. A new acceptance or a viable alternative maybe your best courses of action rather than fixing the problem in front of you. We want fixes, not putting you down for wanting that, I've just been faced with plenty of things which can't be solved and have an affinity for such situations. \r\n\r\nNo one grows up thinking they're going to put a loved one into a facility. It DOES feel like failure and rejection. But, it may be the most loving thing you can do first for your husband and just as important for you. You and your needs are an important part of this equation. You're not without limits. You need and deserve care as well. The right facility provides that.\r\n\r\nNote I said, right facility, not perfect facility. There is no perfect facility. You can pick apart almost anyplace because at the end of the day, no one else is you, no other place is home. You can't go into place measuring them by the standard of care that you would personally provide. You can and should however have high standards.\r\n\r\nG-J is right, you are extremely important to your loved one even in a facility. You should remain engaged and a part of his life and be sure to interact with the staff separately from the needs of your husband. No matter where they are, no matter what you end up deciding, you are his \"love-giver\" \r\n\r\nLast but not least.... (((Hugs))) Your post moved me obviously. Denise is going to discipline me for being long winded... again but I just had to write back to you. \r\n\r\nDefinitely prayed for you today!


Ahhh, Kathy, this is hard! I can hear your heart breaking through your post. This must feel so confusing and so how-in-the-world-did-we-get-here? So scary. \r\n\r\nYou are a wonderful, lovely, loving wife. It's a fact that I know to be as true as the sky is blue.\r\n\r\nAs I read your post, I remembered a wonderful woman named Shirley. She as a member of one of our online support groups about 10 years ago. She cared for her husband, Pete, who had a stroke in his late 50s. When his care needs became too great, they made the decision to place Pete. They talked about it, cried about it, chose a facility together. It was a next step they took as a married couple. It's not a next step any married couple expects to take but, for them, it was what kept them a married couple.\r\n\r\nThere is no shame in this. There's only strength in pursuing solutions, which is what you are doing. \r\n\r\nOne moment, one day at a time. We'll hold your hand through it all. \r\n\r\nI'm so glad you told us. :)