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My Mom just entered assisted living with a diagnosis of 3rd stage Lewy Body Disease. She doesn't know her diagnosis as the neuro-psychiatrist said it would be better not to tell her as she can't fix it and he said to never take away hope.


It is really stressful to me right now to "lie" to her when she asks when she's going to come home, to have her talk about driving again and to have her talk about paying her bills when I know her income will go 100% towards Medicaid when its finalized.


Does it get easier? Do I just keep deflecting her and re-directing her? It drives my crazy to have her at the house when I bring her to visit for the day, but when I take her back to the assisted living I feel horribly guilty as I drive away.


I feel like I'm darned if I do and darned if I don't emotionally at the moment. Some days I think it would be ok to have her back at home and as soon as I spend some time with her I realize how bad she can be sometimes. Plus if I bring her home, I lose her spot in the assisted living and there are very, very few opportunities in this area for AL's that take Medicaid........not to mention she would lose the social interaction and health monitoring as I work all day and she would be alone.......


I'm so stressed at the moment!

Thank you so much everyone! My husband, son and I are going on vacation starting Thursday. My second cousins are coming over from the coast to visit with Mom and house sit our fur babies while we are gone. Its a very much needed break and we won't have cell service so it will be a real treat to not have to think about this situation for a few days.

It reminds me of when I would leave my son at daycare while I was at work. I hated it and I hated when he would cry as I left. But I knew he was in good hands and being cared for and when I would occasionally peek in unexpectedly I could watch him playing and having a great time with his friends and the staff. Its just so weird to be doing the same thing with someone who actually raised you from a child......I'm so used to my Mom being an authority figure that its really hard to adjust to her becoming more and more child like and switching roles.

Talkey we do the best we can. I really don't think this is a one size fits all kind of thing. We have to be able to adjust and be flexible as each situation arises. Either way is really hard and has its own pitfalls. Hugs.

Marcia I will check out those videos. The more I know the better I can respond to her I think.

Windy I'm trying to step back and this vacation will help do that. Mom is going with her group to a Casino today. I hope she has fun. She kept asking me to go and I just said "No, I have to work. You go and have fun". She asked to go on vacation with us too and I just said "That would be great, maybe some other time when we can plan better." I"m working on it!

God Bless you too Sonny. You are right, so many paths and yet there are a lot of similarities as well as differences. Its like an all you want to eat buffet, take what works and pass on by what doesn't!

I'm more calm today and even more so thanks to all of you! Thank you!
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Reply to Issybeau
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I'm not where you're at...yet...with my Mom but all I can say is that the only way to know is to go thru it and then look back at how safe and comfortable she is. I'm here because I've lost the ability to be objective since I'm subjective right now. Meaning I'm involved in the situation and not outside looking in. The people and professionals here are responding whit what has helped them get thru different stages, which there seems to be as many as Reader's Digest issues, and are willing to relive their pain to help ease ours. Some suggestions will work and others won't. It's all trial and error; like life; to find what's right for Our situation. I'm still blind as to where this is going to take me and I'm more afraid of where I'll be (emotionally and physically) after this is gone. My suggestion, and this is just from me, is to read Everything here! Even if it doesn't apply, it might make you feel a little more at ease knowing there are others who Have gone down a nearly similar, blind and scary path. I did read in one comment somewhere on this site, this comment from someone: Remember, We are the rarest of humans. We will show more Love than what we will ever receive. Be proud of Your strengths because it's That; that will protect you. I think I will understand that more when this is all done with. God Bless you Issybeau and all of Us here.
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Reply to Sonny65
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im sorry talkey.
we really do the best we can. its easy to look back and see what we could have done different. and second guess our decisions. but remember no one is perfect. and im sure your dad knows that you meant no harm to him. I had a regret about my dad. cause he was on hospice and he was breathing very hard. and I didn't know that I should have called hospice for meds to relax his body. I felt bad, but I just didn't know. I ended up getting help, but I still felt bad.
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Reply to wally003
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Issy, I'm crying now as I write this. It's been a rough day thinking about Dad and his last days. He suffered from Parkonson's with dementia and lived his last 8 months in memory care. I wish I had been more compassionate with him by NOT being so forthright about his living arrangements, finances, etc. I think he would have been happier if he thought he would go home some day.
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I understand you are having a stressful time. and ive been thru it.

it does get easier over time. just remember she is being taken care of. and when you visit make sure of that. I feel really lucky my moms in a great place. but that doesn't mean I ignore her or don't make sure any abuse or whatever is happening.

BUT even now after my mom being in AL since 2011, there are still ups and downs.

and I still feel bad when I leave each time. I try to make my visits good each time I go. my mom seems pretty happy. she is 88 and her dementia makes her forget anything after about 60 seconds.(+/-)
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Reply to wally003
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Issy, I think it may be a mistake to bring her home for visits. She needs to adjust to her new reality. When I got my folks in assisted living I checked on them, visited briefly and would watch from the lobby as they had dinner in the dining room. They had to figure this place out on their own to a point.

My presence reminded them of all things “home” and the past.

Your doing the right thing. It’s a huge adjustment. Stick with it, take a step back, it will,get better.
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Reply to Windyridge
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I hope someone who has been through this will answer you. It sounds very hard. Have you heard of Molly's Movement? A man in Ohio did YouTube videos about his mom who had LBD. They were informative, I thought. You might find them helpful.

https://mollysmovement.com/

He and his mom hoped the videos would help other families affected by the disease.
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