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Does the guilt ever go away?
Posted: Sunday, January 22, 2023 9:19 AM
Joined: 9/10/2022
Posts: 7

It’s been a little while since I’ve posted but a lot has happened…a recap - my 72 yo mom has dementia and was living at home with my youngest brother but she has refused medications and any assistance for months,  we’ve found her wandering at night in the cold and she has auditory and visual hallucinations. We’ve been struggling for months…I live out of state and went back at Christmas to see that she’s also not eating or showering or anything else.  We called an ambulance and had her brought to the hospital. She was first evaluated at their geriatric psychiatric floor. Shes lost a lot of weight and refused medications so she was moved to medical floor and placed on Hospice care. She was in the hospital for 10 days as we looked for a dementia care facility in the area - during that time, she started eating and taking her medications. We finally found a facility that would accept her after 3 referrals to it. (Her behaviors have softened bc of the medications) she’s been there for a little over a week now. I visited yesterday and she was definitely excited to see us (me, my husband, daughter and youngest brother) but thought she was at airport waiting for a flight to Italy. We went along with her but eventually she started saying that she’s going to cancel and just go home with us because she didn’t see her group - we redirected her and told her we’d go next time. By the end, she started getting upset. We comforted her and told her we had to go and we’d see her when she got back.  

My brothers all live near her facility plus her sisters and friends which is why I wanted her in their area but no one has visited her except me (I live 4 hours away so I can’t be there every day/week)  I know she’s getting the care that she needs and she looks much healthier and brighter but I have so much guilt especially since no one has visited her there. 

Will I ever feel ok with my decision? I know in my heart that she wouldn’t be here right now if I didn’t get her to the hospital a few weeks ago. I just feel guilty all of the time for “putting her in a home” Does the guilt ever go away? 

Posted: Sunday, January 22, 2023 9:53 AM
Joined: 3/6/2017
Posts: 4015


You have nothing about which to feel guilty. You have made sure your mom is safe and cared for. You did not make the move necessary, her disease did.

As for the more local family not visiting; often it is the suggestion of MCFs to give the new resident 2-3 weeks to settle into new routines and caregivers before arranging family visits. Perhaps the other were following professional guidance around visits.

That said, ideally you mom should be in a facility where her POA is close enough to easily meet an ambulance at the ER and have eyes on routinely to be certain care is appropriate. If the visits continue to not happen and you are POA and would visit, consider moving her close to you.

FWIW, I moved my parents back to where I live. Before that it I was at best a 4 hour drive away and during the winter a flight if I could book one. When dad went into a MCF, I chose one in the same town as his uncle to avoid him whinging about me making it inconvenient to see his brother. I drove past no less than a dozen facilities on my way to visit dad. My uncle visited exactly once for about 30 minutes.

Posted: Sunday, January 22, 2023 10:29 AM
Joined: 9/10/2022
Posts: 7

Thanks for the reply - I’m hoping that they will start to visit her now that I’ve gone and it went as well as it could go.  I think they were waiting for me to “check it out” first because unfortunately that’s what they do…if visits don’t start happening; I’ll definitely look into moving her closer to me and my family.
Posted: Sunday, January 22, 2023 11:05 AM
Joined: 4/2/2018
Posts: 7010

kab, this video was made for you. Why Do Caregivers Feel Guilt? 
Posted: Monday, January 23, 2023 8:55 AM
Joined: 7/7/2021
Posts: 8

Wow did I ever need that today. Thank you for posting.
Posted: Monday, January 23, 2023 4:06 PM
Joined: 7/17/2020
Posts: 326

DO NOT FEEL GUILTY! You've done all that you can do. The guilt will go away when you accept that she is getting better care than you can provide and when you allow yourself to not feel guilty. Learn to let go
Posted: Monday, January 23, 2023 4:18 PM
Joined: 4/7/2019
Posts: 504

I felt the same way that you did when I placed my sister in memory care. She viewed it as a punishment for being bad. She promised me up and down that she'd be good (kill me now) if only I didn't force her into memory care. I felt horrible, worse than horrible.

But you know what? My sister is doing well in memory care. She has caregivers 24/7 - something I couldn't provide. She's eating well too. This is all good.

Once I had some space from day to day caregiving, I realized that my guilt wasn't really guilt (okay, maybe some was), but most of it was just sadness that this is where we are now.

At this point I don't have any guilt. I'm still sad, but that's a different thing.

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