Alone in all aspects

PSP

I'm new to the ALZ site and this group. I have never felt so alone with no one to speak with about my Mom. I am reaching out to others in hope of a sense of normalcy and someone to relate. Can anyone open up about how they handled the initial finding out and how it changed their lives?

For me: My life changed when I lived in one state and my mom in another. We were not close other than a few phone calls throughout the year. Since her husband had passed away 2020, Everything was placed in my hands to deal with….health, bills, her property, and her having a semi truck show up with all of her household items out of the blue. I have since had her move closer to me in assisted living, but wow….I didnt see this coming! Having not had a close relationship and now this with her health….and her not remembering we didnt have a close relationship beyond baffles me. Curious how anyone else was draw into their parental situation with ALZ?

etjames

https://alzconnected.org/discussion/70978/alone-in-all-aspects

Welcome and I’m so sorry to hear about your mom and the amount of responsibility that’s been hurled your way.

I am an only child caring for both my mom and dad. It’s incredibly hard not to get lost in being a caregiver of someone with Alzheimer’s. Know that it’s ok for you to go on with your life as much as you possibly can. In the beginning, I was motivated by all the professional advice out there to get them to change their diets, exercise, play brain games and puzzles, etc. It became very clear to me that they weren’t open to these activities, even with repeated attempts over time.

At first, I was motivated to be the perfect caregiver to my parents. Even though being around them made me feel horrible and guilty and invisible, my perfectionism kicked into overdrive. What I’ve learned over the last 5 years is that it’s ok to be a really average caregiver and make mistakes and have your loved ones be unhappy and have your friends and other family judge you and minimize your experience. You have to protect your happiness and your life as much as you can. Know that whatever level of care you’re giving is care that she wouldn’t have otherwise — it is good no matter what. Forums like this one, the Alz hotline, and therapy have been the biggest support for me. Find what makes you feel supported.

PSP

Thank you for your message. I never gave myself credit and your message inspires me to at least do that. So thank you.

overwhelmed1965

This is exactly what I was looking for. Someone who feels the same way I do. It's so incredibly shockingly lonely. The constant, relentless feeling (even if it isn't spoken) of being judged—yet being the sole caregiver and the one expected to deal with everything. I have two siblings who don't live in the same state but also have chosen for initially valid reasons not to have a relationship with our mother, don't even acknowledge what i am dealing with. And there has been no issue with my relationship with them. My mom's siblings have all kinds of opinions but also don't help and have only come to visit her 3 times in 10 years. I only speak to one of them now and she drives me nuts. This has cost me relationships, my mental health, my physical health, has impacted my marriage in that my husband and I could never go anywhere together because we couldn't arrange respite care (the one time we did it, the respite agency was a stunning disaster), it impacted my daughter and my relationship with her because the stress impacted everyone in our home. Even as much as I tried to protect her from it, she's very attuned to me and no matter how hard I try to hide it from her, she knows me as well as I know her. My mom was always a kind and giving person but she has always been very content having other people take care of her. Something I didn't realize until she moved out to the state in which I live, about 20 years ago. The majority of her physical issues are her own fault. She absolutely refused to follow doctors instructions after multiple back surgeries, her nutritional intake is pretty much that of an 8 year old with free reign in a grocery store. Now after 10 years living in our home she is in a care facility. I had to take her phone away because she was calling people incessantly and leaving bizarre voicemail--including me. So I got her a tablet and set up fb messenger where people can restrict her calls if they need to. She also called 911 and reported an assault during one of her hallucinations episodes so we had to take phones away. My mom's computer illiterate siblings hate it and make passive aggressive comments about that so while it's too bad they don't like it it's just one more thing on the judgement pile. And now all mom does when we talk is complain about wanting new clothes (she doesn't need any and she just got several new things but instead of understanding she cries like a child throwing a tantrum and wants to know why she can't have new clothes) and why don't I come visit (just spent 4 hours out there this week, I've just started a new job, and I need a @#$*! break!!!). All i get is crying and complaining and nothing else. And I don't like talking to my friends about it. I feel like it's all I ever talk about. But at the same time I need desperately to connect with someone(s) who understand—if there is anyone. This is killing me. I've literally been suicidal over this—it's been that bad. I'm healing, I won't ever let it get to that point again. I'll step away completely and forever before I let it get that bad again. So that's why I joined this site. I'm so tired of feeling so alone.

stellak

Oh my goodness, same, same, same!!! I feel like no one understands the position I'm in, not even my husband or best friend. They try so hard to be supportive but until you live it you don't really know. I lost my dad last Sept. (who was Mom's caregiver) and my mom entered memory care right after (they had moved into the assisted living community one week before Dad went to the hospital). She entered Hospice care two weeks ago but it's not the end yet. I wish I knew how much time I have. The nurse practioner says months but she doesn't know how many. The anticipatory grief is killing me. And I am doing it all my myself too. My only sibling is out of state .