Minor Ventilation
Comments
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I really feel where you are coming from because the sentiment of missing out on other stuff to care for a loved one is something that I have struggled a lot with. For me it has become about not ignoring how I feel but addressing that and allowing myself to get respite care and talk to others about what's going on. Also, caregiving teaches such valuable lessons that can really only experienced first hand that it is really an invaluable experience to be a caregiver. Caregiver stress is real, though.0
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My mom did the same - she had paid caregivers with her for 8 hours a day, I visited every couple of days and called daily - yet she would constantly tell me that she is all alone and could I please call or visit. When I would remind her that I was just there yesterday she would respond that she did not see me. It's very, very hard to deal with - I feel for you.0
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I feel your pain. I don't have anyone to count on for respite. If someone is here while I am out it is only for a short period of time. I am either going to church or the grocery store. I had a job and was preparing to sell my house when my mother was hospitalized for a kidney infection. She would have been discharged to a facility except that her COVID test result was positive. A person cannot go to a facility until 10 days had passed since the test. My mother was 3 days short of that so she went home. She couldn't be alone so I stepped up. I took leave from my job, that lasted 3 months & since I couldn't go back to work as my mother still needed help I stayed. Also by this point her doctor had put it in writing that she should not be alone. I still own my home & pay all the bills for it. My daughter lives there with her spouse & 3 children. She works & he doesn't - want to....
I keep telling myself that everything changes and this is not a permanent situation.
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Floyd i also empathize, my partner whom i adore and miss with all my heart says harsh things to me at every visit, i must not love het any more, I must not want her to come home, on and on. Impossible to redirect, and it doesn't get any easier to hear. I'm back to the point of curtailing visits because it has not gotten any better over ten months now.
I guess they really do feel that alone. I do get the sense that my partner may be better off when im not there, but worry so about need for supervision. Are you anywhere close to considering placement or bringing in some help so that you get some breaks?
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One of the tragic things about this disease is that it robs sufferers of human empathy. So our loved ones have no conception of how much we sacrifice for them, of how much we do, of how we struggle to make them happy and keep them safe. This was one of the most maddening things I discovered in the first year of caring for my mom. She just hadn't a clue how much my husband and I were hustling and struggling to make her happy. She had absolutely no gratitude for anything we did. Ever. So I sympathize with what you're feeling and the intense frustration you're going through. I understand completely.
I visited my mom every day when she was in assisted living, and I stayed with her for several hours each day. She had a phone then and would tell relatives she never saw me. Now that she's in memory care I still visit every day. She complains that I never visit her. She grows angry and upset claiming I don't visit enough. I see other residents with visiting family members, and later they too complain that their loved ones never visit.
It's a never-ending struggle. It's a horrible disease.
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Thanks for all the responses. I wasn't really expecting any (because it's just a vent/rant) but it is good to hear I'm not alone. This site is the only place I feel I can find warm shelter from this cold disease. When I saw I had 8 responses, I actually thought they were going to be negative and conforming that I am a dick for feeling frustrated (like every other site would do) but not here. I don't know how I would've made it this far if it hadn't been for this site and its kind members.
And for everything we're all going through... it will ultimately get worse. I can't stop thinking about that. There's not a day that goes by that I don't think about giving up and sending her away, but I can't. If she feels lonely with me here, how lonely will she feel actually alone?
It would just be slightly easier if I had sibling help. My sister has just started taking my mom for a few hours on the weekend but never really lets on when. So, I can't really make plans to "do me" when she just pops up. It's never on my time. Like, I could run these errands now, but I only have this window of time and the Laker game is about to start.
The evil me thought up a plan last weekend. What if... when my sister comes to drop my mom back off... and I'm gone. No note. No nothing. I just couldn't take it anymore and I ran away. What in the hell would she do? I'm afraid to even think. As much as I would love to see that scenario work itself out, I would NEVER put my mom through that.
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People with severe dementia are going to feel lonely regardless of whether you are with them 24/7 or if they see you for visits. This is not something any of us can prevent or change. It is beyond our control. Assisting a loved one to move to an AL or memory care isn't "sending them away". It was, in my mom's case, a chance for her to have companionship with others her age, excellent care, and stimulation provided by activities not available to someone who's mostly at home.0
Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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