Having a massive attack of guilt

Merla · January 7

My parent is going to be placed in memory care and it's going to have to involve some fiblets. I didn't expect to feel so guilty about this as ltc has been my goal for several months now. There is no feasible alternative and we selected the very best memory care in the area after a comprehensive search. I also feel guilty because she is mid stage where theoretically one could live outside of a facility. I'm feeling terrible as a child and POA. Also historically she has never been an easy person and was extremely difficult the past few years but now she has morphed into a sweet kind older sounding person who is kind of helpless so this is by far the nicest she has been to me as a adult. She can get angry but her baseline is nice. So her agreeability and niceness also make me feel more guilty

. I don't live in the same area as my parent so my sibling will deal with the logistics and emotional day but its quite likely our parent will be mad at both of us especially me if she understands I'm responsible for the decision financially. I'm kind of terrified of this day and wonder what my role should be since I'm in another state.

SusanB-dil · January 7

Hi Merla - you know she will be cared for, and yes, it is still hard. You will still be her advocate.

((hugs))

--Rebecca-- · January 7

I think you should consider making arrangements to be present for the move. You should be there to support your sibling, and to help with the physical move.

I do not subscribe to the "drop loved ones off and don't have contact for two weeks" outlook. I think it is helpful to pop in briefly for the first 3-4 days. You can observe their set up, and can buy whatever items they may need. Labels, organizers. For example, my dad needed directions for his new TV set up. My dad was very nervous about his first shower, and I was able to buy him a better robe. Staff will have questions about their care, and you can offer background information. This also sends a message to the facility that this is a resident who is supported by their family, and you have high expectations.

Your mom may be mad at both of you. She is entitled to her feelings and the time needed to process them. Just tell her that you love her, matter what. Use the fiblet that her doctor is who recommended this change. Get the story straight with your sibling.

Victoriaredux · January 7

"I don't live in the same area as my parent so my sibling will deal with the logistics and emotional day but its quite likely our parent will be mad at both of us especially me if she understands I'm responsible for the decision financially. "

I suggest you and your sibling get on the same page and IF your Mom asks why she is where she is you answer with the same vague Doctor wants you to get checked out/ your house needs a repair and then switch the topic.

If you are looking for a level of approval from Mom , probably won't happen. If you are worried she'll whip out a spreadsheet and say — "actually would have been 2.5 % less expensive to make these listed capital improvements at my house and hire from this agency…." I can pretty much say that ain't happening either.

And where she is will probably flutter in her mind - one of my PWD's thinks they just arrived (after 5+ years), are staying at a hotel, the Doctor is their caregiver and they are a house guest etc.

You made the right call, your sibling is helping. Take the win.

[my opinion only - mid stage is like a western town TV set —looks real but behind the facade there is nothing to back it up. The mid-stage PWD can coast in a lot of social settings, do simple care tasks but can't be safe when something complex arises. We place based on their worst day - safety first].

--Rebecca-- · January 7

I, too am the POA who lives out of town. I relate to your story as I also have a difficult parent who became softer and nicer as Alzheimer's progressed. I am so grateful that my burden was front loaded. Watching his personality slip away wasn't hard for me. Families caring for a pleasant PWD suffer so much more, as the disease progresses.

We need to celebrate whatever win we can get. Becoming more agreeable was definately a win. My sibling helping out is definately a win, and I tell my brother that often.

Shake off your guilt. It will just drain you, and it doesn't add anything to this journey. When things turn from mid level to severe, your mom will be safe. We don't get to pick when that happens. You did the right thing. She will never wander from the house, or burn it down. She won't have the anxiety of living alone with growing memory issues.

This is terribly hard. It doesn't mean you are on the wrong path.

mabelgirl · January 7

I hate the fact that many of us, especially baby boomers, feel the guilt of not keeping our LO at our home no matter the cost. We were raised with that mindset in a time when the alternative was not at all good. Times have changed and AL and MC are much better and more equipped at keeping an aging PWD comfortable and safe while preserving the family. My mom was pleasant before dementia although a bit narcissistic and frequently found fault with others. As the disease progressed she got much more nastier as her delusions and hallucinations took hold more. Medication has helped and I was determined to keep her at home. However the toll it was taking on the family as a whole got to a breaking point when children were affected I mention this because one would think I was relieved to place her in an ALF but even till the day she moved in I felt horribly guilty. It’s been 5 months and when I peek in on her via camera and see her just sitting alone on her bed the guilt hits me again. Then I see the aides checking in trying to get engaged in the activities and she denies with a smile. So it’s been a roller coaster but I did and do what I feel is in hers and the family best interests and the guilt is lessened. You should do what you need to do for yourself to ease the guilty feelings, not so much based on your moms reactions. Prayers for peace and confirmation that you are doing best for all.

Merla · January 7

I also feel guilty that my parent isn't going to be living by me. This was the original plan my mom wanted and also what I assumed would happen and her legal documents she created before dementia gave the idea that this would have been her preference. However, I ended up having to put her on a plane when the situation at my house spiraled downward. And shockingly my sibling and our extended family stepped up to the plate. The must have been in denial prior to this. And also it has helped immensely that my parent has lost her rough edge and now is pleasant and agreeable so people are willing to help her and she is willing to be helped to some degree. My sibling spent very little time in the past decade with our parent so it's a huge win he is stepping up to the plate.

when my parent left my house to go to another state with my sibling and other family, I knew that I was giving up a lot of control of my parents care. So far my sibling and I are working well together in terms of being on the same page with decisions and thankfully he is receptive oand my influence on facility selection because I did a ton of research on the topic.

however im letting my sibling take the lead on logistics of the move in plan since he is there. I don't know if I agree with his plan but also don't think there is a perfect plan or a kind way to do it. He is leaning on the facility to help him navigate this. He doesn't want me to come as this could alert her that something is up. I also don't think that he should just leave her to tough it out alone for a couple of weeks unless trying to help her get her room set up and showing her around etc turns out to be unhelpful. However, it's somewhat out of my control and I don't want to alienate my sibling as we need to have a good working relationship

Victoriaredux · January 7

"I also don't think that he should just leave her to tough it out alone for a couple of weeks unless trying to help her get her room set up and showing her around etc turns out to be unhelpful." The staff can guide him here and most places do advise to have a no contact adjustment period .

It's not a 'tough it out" but a kindness, she'll be dealing with new rooms, food , people and that needs to percolate in — having a blend of new and familiar people at the start can make it harder . Kind of like when you wake up from a dream and you feel like you are in two places at first .

kblau · January 8

I did the tough it out with my moM and she called the cops and told them she is being held against her will. Pls go with your gut. You don’t have to answer all the time but do what feels right.

I had my mom originally placed in AL in a facility 30 minutes away from me. She was there for 3 months and then I knew she needed MC. The drive was taking a toll on me and so I moved her to a facility 6 minutes away and I cannot say enough how distance matters. I understand your sibling will be taking on the visits as she will be out of state now. I would have a convo with them about popping in frequently and at different times to really understand the care given. My mom is at a better known upscale facility and I still have to be on top of her care.

kblau · January 8

but also just know this is what is best. The earlier they are when in a facility the better they can acclimate. Think of it that way too.

Anonymousjpl123 · January 8

I wish you, your mom and your sibling and easy move. I think the very best thing you can do is make sure the facility is treating your mom well. This, more than anything, will help her and improve her quality of life.

My mom went to Assisted Living in stage 4/5, and after about 8 months moved to memory care. I’ve regretted none of it. Our society makes it seem like we should all be caring for our parents at home but in many cases like mine where there aren’t big extended families that’s just not possible. Or even desirable. My mom would be alone with an aide all day.

What IS possible is making sure your loved one is treated well and cared for. That’s where I’ve put all my effort, and it really has paid off. When my mom was less far along, a fancy AL/MC with beautiful furniture and little care was fine. When she advanced they basically said they couldn’t care for her and we had to move. I looked at a million (5) places and chose the best one. It’s been the best decision.

We can’t stop the progression. My mom makes less and less sense lately. But she is not depressed. I visit a lot, she knows her fellow residents. They all seem to accept each other in a way that literally brings me to tears sometimes. It’s not anything like a horror show. The staff really know what they’re doing and actually seem to enjoy the residents.

I have a friend whose mom stayed at home the whole journey with lots of care, and was miserable, even suicidal - and they wouldn’t have it any other way. No regrets. There are so many “right” ways to do this but it starts with making sure you’re loved one is safe and cared for.

Check in with your sibling and visit soon, when you can. Let us know how the move goes.

Quilting brings calm · 12:55AM

Definitely support your sibling. He may not be doing it the way you would, but he is doing it. Criticizing what he’s doing may result in your mom being on a plane back to you. If he’s deferring to what the facility recommends, accept that. They are experienced at this, he and you aren’t. You do not have to rush back to be there the date she moves in. I’d recommend going later, maybe when your sibling needs a break to go on vacation. Because even though she is in a facility, your sibling will find his life taken over by her needs and will need breaks.

Having a massive attack of guilt

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