Thank you and update

sharilee45601 · August 20

Thank you for the kind words and support on my earlier discussion post. Monday and Tuesday was at my wits end with Dad. Yesterday and today he has been better. I plan to go to a local Alzheimer's support group the 27th. I also talked to my PCP. My sister is another story, I explained to her I need emotional support and she said she would. Then I send a message venting and her nothing back. I need to accept she is not going to give me emotional support.

SusanB-dil · August 20

sorry for that lack of support.

Glad you found a group, though. Hope it works out.

and yes, we're here…

H1235 · August 21

I’m so sorry. I also lack emotional support. My husband listens but usually doesn’t say much, my daughter changes the subject right away and I no longer even try with my brother. He had a history of making things considerably worse. He insists mom is more capable than she is, wants to tell her everything and make her own decisions (she has rights, good grief). It’s a lot of pressure to handle everything on your own and not make mistakes. It’s not just the lack of support, it’s that we (caregivers) are the only ones that really have skin in the game so to speak. Even when I do get an actual response to a difficult situation, it’s usually not well thought out and kind of half heartedly given. I wish I had someone who understands I could sit down with and really talk through the pros and cons of tough decisions, someone that would care enough to really put thought into their responses. This site has been the best. I don’t know what I would do without it.

WillisL · August 22

I only have my husband as support. He is good to her. He’s a chef and cooks all her food. There is no other family. None of them call or check on her. They never did before the diagnosis. It’s not easy, and we doing everything we can to keep mom comfortable. I started telling my first cousins so they could talk to her before she forgets them. They haven’t called. I can’t tell my sister since she’s a predator. My mom doesn’t want to talk to her anyway. I mange to hit the gym for my stress relief and the break I need.

ARIL · August 22

@H1235 says that “it’s that we (caregivers) are the only ones that really have skin in the game so to speak.” This was a very helpful framing for me. I may be expecting more of some relatives than they are capable of.

Yesterday I had a short visit with a woman whose mom is in the same facility as my dad, and I heard myself saying, “I just hoped we could chat because I am finding this experience to be a lonely one.” It was helpful to talk.

This forum has been a game changer for me in feeling seen and heard. I wish I had found it much earlier.

jen ht · August 22

https://alzconnected.org/discussion/comment/280592#Comment_280592

Hi @ARIL

So true. I appreciate this framing too.

Sending you lotsa love. I think of you often. 🫂 (and the "crew" here) I am so thankful that we have each other here. 💜

Jen

ARIL · August 23

Very kind of you, @jen ht. Same here! This crew is so important to me.

Mercedez · September 18

I'm new here and thought 30 minutes would be enough time to check out the group. I was so wrong. I relate to you and so many others, especially about wishing I had someone to talk through hard decisions about my mom living with us. She has EOAL and I'm her only caregiver. I quit my day job to take care of her, now I'm serving at an Irish pub/restaurant at 55 yo. Not the way I planned my future for sure. Unfortunately, I need to get ready for my shift and shut down my computer. This has been so helpful. I can't wait to come back when I have time.

SusanB-dil · September 18

Hi @Mercedez - welcome to 'here', but sorry for the reason.

Yes, to be a caregiver is a lot, and so much to consider.

A couple things for someone new to 'this' is paperwork - make sure DPOA and HIPAA accesses are in order.

Is there an adult daycare near you? Do look into that a day or a few a week for mom, so you can get some respite, since you are the only caregiver.

Sorry you are dealing with 'this'.

Thank you and update

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