The Caregivers' Guilt Dumpster - Open for business

@cath50, acceptance is hard and an ongoing project, especially since every day brings new challenges to accept. Often anger, resentment, loss of hope come before acceptance. I don't think they can be avoided. Might it help to see resentment and loss of hope as stepping stones on the way to daily acceptances?

How are you doing today?

My wife was first diagnosed in 2012 with MCI and it's been progressing ever since. She now knows me about 1-2 hours a day, which is awesome. She is in day care 5 days a week but weekends and holidays can be brutal. I'm no longer allowed to sleep with her because she only sleeps with her husband (we've been married 57 years). I take care of all meals (except day care) and our house. After going to bed last night I heard her banging things around (11:00 pm), so I got up to see if she was ok. She was packing her clothes & shoes because she was going to live with her parents (who have been deceased for well over 20 years). I diverted her attention enough that I could get her to take some more medication, which calmed her down and persuaded her to have a 1 hour nap. When she woke up this morning, I got her breakfast and ready for daycare. She then told me she wants to stop going to day care. (this feeling comes and goes). I dropped her off at day care and she was happy to see the people there. She does get violent at times but there is nothing she can do that could hurt me. When she does get violent, I call my son (who lives less than a half mile away) and she ALWAYS knows and trusts him and he always comes right over to calm his mother down.
My wife's doctors keep telling me to place her in a memory care facility and there is no one person can do all the tasks necessary to keep her safe. I feel like I would be abandoning her if I did that after being married for as long as we have been.
To Scott and everyone else who has made that decision, what were the deciding factors when you did make the decision for memory care? How to you handle the guilt for the decision?

@colleenyoung Yes. A great idea. I carry guilt from caring for my mom & sister. My mom fell & broke her hip, @ 91, on my watch. Every morning , about 6 am ,i got up to make coffee & start the day. As i came downstairs , i passed her room & knowing she was very light sleeper,i would say quietly, “its just me. Its very early. Dont get up yet. Ill be back about 40 minutes”. It wouldnt wake her at the volume i was speaking,so when she answered”okay” i knew she was already waking up. After i came back down to start the day,i found her on the floor! She had fell going to the rest room & broke her hip badly. She wasnt crying or hollering. She was very quiet & unnaturally unconcerned. She got an operation and all seemed well,but she wasnt hersef again. Its my belief she had a stroke & fell. She had,had a stoke a couple of years earlier & we recognized it & rushed her to the hospital. I dont think the doctors caught it, this trip. She was before the fall, able to converse, watch tv ,walk with no issues , & was nice to be around,but now after, she acted like she couldnt understand people, didn't talk much, couldnt folliw directions to do the nessasary things to heal from such an awful break. ,etc. She eventually passed 1 year later, in a residential hospital. She was 92. My guilt is great just because I was powerless to help my mom. I feel I should have gone in at 6am & made sure she didnt fall. I tell myself maybe then she’d still be with us. I go around & around in my head of what i could have done differently. Im crying just typing this.The guilt is real and it never lets up. Im caring now for my sister,who is 72. She has dementia so bad she sputters instead of speaking because she cannot find her words. She slams things when shes mad & sometimes hits me with an object if she gets frustrated. I have severe rheumatoid arthritis,my hands are crippled now. She gets agitated & frustrated if i cannot show her how things work. Occasionally,when she strikes me with something or pounds on the dashboard when im taking her somewhere in the car, I get irritated & raise my voice to her. She will pout,then apologize. I feel terrible i hollered. I understand and follow the fact that she means none of it. She is interacting the only way she can. I love my mother & my sister,very much. Im so afraid ill lose her. The Guilt is real.

@tunared sir,you are indeed your wife angel. You’re caring and wonderful attitude would be a gift to any woman on the planet.
To me, the time will come that I may not be able to take care of my MCI diagnosed older sister, but I won’t know that time until it arrives. Only I can make the choice when I feel like I’m not enough to care for her needs.
We are trying to keep her in her home as long as possible , because she’s very aware of what’s happening to her now ,and we are trying to allow her to stay in her house with her kitty cats as long as possible.
You will know when the time comes, too. When it does come, keep strong, & try to be as calm as you can, because MCI people do pick up on emotions. It won’t be the end of the world, it will feel like it, but she may do very well in a facility for memory care.
Maybe ,when the time comes, ease into it ,and see how she does it first. You might very well, be surprised.
God bless you. I don’t envy your situation at all, but know that these rough days are gonna be ahead ,but with you there and her there, y’all can take on this together. Im in awe of you & your deep dedication to her. She picked quite the husband. You have nothing to feel guilty of.
Do more research on these “care facilities”. & get familiar so you will know all about it & it wont seem so terrible when you understand the process & all you & her can expect.

@cath50 With constant needs, changes and frustrations I can only tell you I rotate between anger, hopelessness and acceptance. If the first two ever overcome the third I will have to make different arrangements, but so far I am able to have moments of the first two, followed by accepting that caring for him is my purpose right now. I have let out loud sighs, and then had to explain to him I am frustrated by his symptoms, which I know are also frustrating for him, and not frustrated with him personally. It's a reminder for both of us when I say this. Wishing you well and peace of mind, which is hard to maintain in these situations!

@loopycann thank you, i needed your response today 🙏🏻

@cjme thank you for your understanding

Dani,
Your wife sounds a lot like mine. She also tells me we use to be married, but can also ask, "Who are you?" Sleeping in separate rooms is much preferred to her hovering above me in the middle of the night in an 'anger' mood, demanding I confront the people who 'stole' her clothes or that her brother was coming to kill us (delusions). Does she take glasses and dishes out of the cabinet and arrange them on tables and floors? The wandering has progressively gotten worse, having to physically restrain her and walking directly into other peoples homes. It is the ambiguity of Alzheimer's.

For all the people dealing with a spouse or family member with dementia, they should look into any services that may ease their burden, and it is a burden not matter how much they love the person. Day care is a good option for a start. Many states have respite programs and using one may be a way to ease a person into a long term care facility. No person should handle this situation alone.

@jlap, the negativity can really wear you down, can't it? Was your husband this way before the colon cancer diagnosis or is this a new behavior?