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Placing a loved one in a facility?
I am 58 yo and my husband who has frontotempral dementia is 63yo. He has also lost most cognitive abilities and ability to recognize most everyday items. He was diagnosed in 2021 and the progression of his dementia in on the decline. I have been having a very hard time dealing with his outbursts of anger, which i feel is towards me but i know deep down it isn't (it's the disease), his anxiety, his wandering around the house aimlessly ( he doesn't wander to the outside, thank god) and a number of other things that im having a hard time dealing with. He has progressive primary aphasia and so it's very hard to communicate basic things with him, let alone have a conversation. He has lost interest in a lot of things and can't really express what he WOULD be interested in, so i have to guess and try new things with him and then that doesn't always work out.
I have to shower him because of the safety issues, plus he doesn't always use soap. I have to help him brush his teeth, like loading the toothbrush and telling him to spit every several seconds, cuz he can't remember how to do it himself. I have to give him his meds and sit with him to make sure he takes them all. I help him get dressed and undressed and pretty much everything else that goes along with daily living. I do these things without complaining cuz i know he needs help and because i love him very much.( We've been together 13 years and married 4)
It's getting harder and more frustrating for me because he seems to be more forgetful and more memory loss. I pretty much have to repeat everything over again every day.
My best friend and I have talked in length about what this devastating disease is doing to me as well. I have "lost" myself, I don't do things anymore that I used to enjoy. I can't leave him alone anymore, (again for safety reasons), and he sometimes gets anxious or scared when he doesn't see me for several minutes when we ARE both home together. I am his full time caregiver with no outside help(my siblings don't live in the same town) and
she thinks it would be best for both of us if I place him in a facility like an adult family home. I started getting the ball rolling with the applications thru the state..ive been assigned a financial worker and a social worker and should know in 60 days if we qualify for acceptance with little or no cost to us.
My heart is breaking because i'm not sure if I'm ready to let him go but at the same time I know I can't keep living like this, I'm feeling guilty cuz it feels like I'm giving up on him. But at the same time with all these feeling i'm having, I know he would get better care than I can give him and hoping he will have a better life by being around others going thru the same or similar situation.
My emotions are all over the board if you haven't figured it out yet and wonder if others have felt this way and how did you deal with the solid decision to place your loved one? AND how did you break the news to your loved one?
This is the hardest decision I've ever had to deal with but I know it's the best decision, but then why do I feel so guilty? Please someone give me some advice.
I pray for all who are going this journey.
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I have been attending to my Mom's care for nine years since she suffered a TBI in 2015 which left her with dementia. She has been in a memory care facility since late 2019. I know I have done the best that I am capable of doing for her but: the feeling of guilt is always there. There's always that nagging sense of feeling like one should have or should be doing more.
What I have done is to adapt to that guilt in the same way I have adapted to Mom's dementia: to just let all the self-recriminating words, all the logical ideas of guilt that we "pre-dementians" hold true, let them slide by as I do my Mom's jumble of syllables, without trying to understand them (they, like guilt in this case, cannot be understood) and just breathe and be at peace as much as possible.
It doesn't always work, there are moments when the guilt flares up - just as there are moments when we lose our patience with the person we are caring for - but for me it helps viewing that guilt as PART of the dementia, and to be at peace with it as much as possible. I hope this helps in some small measure.
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7 Reactions@dgcaremom Welcome to Mayo Clinic Connect! I’m so glad you found the site and you’ve made some wonderful suggestions. Did you have a chance to read the article from the NYT?
https://connect.mayoclinic.org/comment/1017595/
I know it’s about placement for a spouse, but I think it’s also true for parents. When we moved my mom from independent living to assisted living she was totally distraught. At 99yo, we felt she would be much safer, even though she didn’t. Like you, we felt that we were doing the best that we could do.
Do you have any siblings who were also involved in the decision making?
Hi Bayviewgal... can you tell me which state you are in and what agency you contacted for a financial worker? I live in Florida and am not aware of any support for adult family homes. Would be grateful for any info you could supply. thanks in advance
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2 Reactions@becsbuddy Thank you for the welcome and the link to the article, I will have a look this weekend. And yes, my Mom was distraught about having to move out of her home, but she was distraught in her home as well because she could not stand having a live-in aide ("why is that person always HERE?!?") and none of us could face the degree of dementia that Mom had gotten as a result of her TBI. One day she was a high-functioning 75yo; the next, she had a subdural hemotoma and did not know where she was, what year it was, etc. I look back at those times and shiver: Mom and I were both thrown into her dementia wholly unprepared.
Which gets back to the subject of guilt! ;') I do have one sibling, a brother, and we share the big decisions, but since I have power of attorney and for a few other reasons, I provide almost all the care to Mom. And here's the thing: I am ok with that. I've learned, through observing others in similar situations as mine, to accept whatever help (or lack of) that I get, and do the best I can with it. I've seen people who's relationships with their siblings are torn apart by the question of care; maybe its unavoidable, but often it seems driven by societal pressures: if their friends weren't asking them "why doesn't your sister help you" and getting mad on their behalf, they probably wouldn't care nearly as much.
A long way of saying there are so many vectors of guilt to press upon the caregiver, and it is one of the most difficult aspects of dementia. And this is the great value of professional care: by not being family, they are not burdened by the guilt that we are. As I say to myself: there is no winning with dementia, it is a cruel and unjust fate, we just have to make the best of it. God bless everyone working to bring comfort to those afflicted.
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5 ReactionsHi terrilynne... I live in WA state and i'm going thru an agency that deals with aging, home and communities. I didn't know where to start with this but thankfully i have a BFF that looked into for me and got me started and now i'm getting help from the state.
Unless you can pay privately, I suggest you start with the state.
I wish you luck and hope this is somewhat of a starting point for you
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4 ReactionsYes I did read the NYT article and if was quite helpful...thank you!!! Now that some time has passed since i first posted on this subject, and have had time to think more about it, I am seeing things in a positive way. AND reading the article really helped. I'm not feeling AS guilty with placing him cuz I know the professionals are going to give him more help that i could. And i hope to reap the benefits of someone else taking on ALL the responsibilities and i get to enjoy my husband every time we will see each other.
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