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Hi! My dad moved to MC three months ago and it has been extremely difficult. He has Lewy Body and Alzheimer's, and his diagnosis and decline have happened so rapidly. His MC facility is very nice - it's the best place for him. However, he hates it there and doesn't understand why he's there, so every time we visit, he spends the entire time complaining and asking when he can leave this prison and why he can't leave with us, etc. Sometimes he's downright mean about it, which isn't like him. The last time, he told me to leave because he didn't want me to get trapped there, too! It is absolutely heartbreaking. He's not able to do any activities, really, and he recently fell and broke his hip, so even walks during the visit are out of the question. After I visit, I cry and cry, and it has triggered clinical anxiety/depression, for which I'm now getting treatment. I'm a mom with kids of my own, and I am also doing my best to support my own mother who's also depressed, feeling guilty, and completely torn up about it all. I had hoped that as my dad adjusted to the new place, he'd be more accepting of it, but that hasn't happened. They've tried adjusting his meds to see if that might help, but it hasn't. So I'm left in a terrible conundrum - when I go visit, I leave seriously depressed and my own family suffers. When I don't visit, I feel awful, sad, and guilty. Just wondering if others have experienced this and have any suggestions. It's just such a horrible disease and situation. Thanks in advance!

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About Intimacy:

Depression and Loneliness are signs of unhappiness. It is not normal. Humans have not evolved to live this way. What your dad needs is loving intimacy. Not in the conjugal sense of the term, but in its evolutionary meaning: The reflection of self-worth one sees in another's eyes.

That does not mean it won't be hard to care for her at home. But please realize that Dementia is not a disease. You should get ahold of Dr. Al Powers's book on the topic "Dementia Beyond Disease.".

We live in a culture totally unprepared for long-living elders. Our institutions demand all we can give but don't accommodate all we need. It will be worse for your generation. Steel the moment to reflect on what you want your children to learn from this.
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You have explained this dilemma very well and YES I get it.

I came to think of it like an 'oppressive fog' that changed form & texture. Heavy & smothering with obligation to visit, then a 'depression hangover' afterwards. Or guit if a avoiding going.

I tried to pull it apart to see what it was made of.

The obligation to visit was coming from me. Because I thought I should. Because that's what 'good daughters' do. The toxic fallout later was not really like depression to me. More like a sprain. Like I had been pulled in to try to 'fix' but I couldn't so was just left bent out of shape.

Depression to me is slowing down, a stop. Where the mind stops the body from moving until the feelings can be felt at a safe speed.

I don't know any other cure than recognising the sadness, which you are 💙. And time.
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Try intimacy; a reflection of self-worth an elder experiences in your eyes.
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SadDaughter4 Apr 2022
Could you please tell me a bit more about this? I'm not sure I follow.
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Perhaps it's best at this time that you keep your visits to just once a week, as it appears any more than that is detrimental to not only you and your family but your dad as well.
Please don't feel guilty for you have done nothing wrong. What you're actually feeling is grief. Grief that you're losing the dad you love to this horrible disease, and that there's not a darn thing you can do about it.
Lewy Body dementia as I'm sure you're aware, is one of the more aggressive of all the dementias, so his decline will be quicker than most. But you have to take care of yourself along this journey as well. The fact that he is being well taken care of where he's at, should bring you some comfort and peace. And even if you cut your visits back, you can still call and talk to someone at his MC to see how he is doing.
Praying for God's peace and comfort to be with you and your family.
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SadDaughter4 Apr 2022
Thank you so much for this response - it brought tears to my eyes and you hit the nail on the head by naming my experience "grief." I miss my dad so much. Thank you.
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It is a horrible disease and a horrible situation.

I don't offhand know of any medication that can make anyone feel great about being in memory care (at least until they're past knowing or caring where the heck they are period). What activities are available? And what sort of activity interests your father?

How are you going about trying to support your mother?

So. If the Memory Care is really nice, what are his main complaints? I mean, specifically. How do the staff respond when your father says he wants to leave, for example? The thing is your idea of really nice may still be wildly different from what's acceptable to your Dad. If you can identify the major irritants it may be that a different approach will help.

I'm not sure (I expect you aren't either) whether you want permission not to visit or advice on how to make the visits less painful, or what. Are there any other factors contributing to your depression?
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SadDaughter4 Apr 2022
Wow - you really made me think when you asked if I am asking for permission to not visit. It kind of sounds that way, doesn't it? But I love my dad so much, and I really do want to want to visit, so I think I am asking for ways to make the visits go better. I have read several books and looked online for ideas on what to do or talk about when visiting, but so many things are out of the question due to his physical and cognitive limitations. The best luck I've had is asking him questions about his childhood. That works for a while, but he always brings it back to asking when we will get him out of there. Do you have any other ideas or ways to make the visits less painful?
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Dear daughter
firstly great that you have sought treatment for how your feeling.
do you have brothers sisters family friends who could also visit?
im in a similar situ; dad has had a rapid decline over the last three months and is now in bed 24/7, we are waiting for a formal diagnosis of vascular dementia but during his hospital stays the doctors have said that’s what it is. it’s hard when our loved ones aren’t settled. I wondered if he might say different things to a different visitor; is it because your his daughter? Maybe that might take the pressure off your visits….
when did they change his meds? Maybe they need a little more time to kick in.
know that he is in a place where he is safe and being cared for. That’s what I keep reminding myself. I guess it takes time for us all to adjust. It’s hard though.
sending love xxx
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SadDaughter4 Apr 2022
Thank you for your comment, and I am sorry to hear about your dad as well. Such hard situations. Yes, my mom and brother are also visiting my dad with very similar experiences. (In fact, my mom probably has it the worst as she cared for him before he went to MC and he REALLY doesn't understand why she can't take him home with her.) I do remind myself that we are fortunate he is in a place where his needs can be met, and that helps. Best of luck to you!
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For all practical purposes, your visits won't contribute to get any improvement in your father's condition. If the visits affect you and your family negatively, the visits should be reduced or stopped. You should get counseling to deal with your guilt feelings. Whether you visit you father or not, his dementia will continue to progress the same until he dies.
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SadDaughter4 Apr 2022
Yes, this is the cold hard truth, isn't it? My dad is probably the best he will ever be right now, and I know this. I do believe that visits will improve his mental health, even if he doesn't seem to act like they do. I have to believe that seeing us is helping rather than hurting. It is just so hard. Thanks for your comment.
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