New to caregiving and I have no idea what I'm doing

hraemckay · May 6

Hello…

My amazing aunt was diagnosed with Alzheimers/Dementia about 18 months ago. I'm not entirely sure how long she was really struggling before I stepped in, but I fear it was several years due to the things I have been discovering in her files as well as learning about the disease. Hindsight is 20/20 and what I thought was depression after her husband passed, was likely early signs of dementia.

At any rate, 16 days ago she moved in with my family (2 teens, husband and myself) in a house we built specifically for her to come live with us in. We are fortunate b/c we were able to build a space that resembled her previous home (though much smaller). It has everything she could possibly need and looks like a great place to live. I work remotely and have a caretaker from 9-12 with her daily just to ensure she has someone to talk to or can go somewhere if she wants to.

I thought when I moved her in I would be less worried (she was an hour and a half away before) but now I find that my worries are just different. I am seeing things I didn't see before because I wasn't with her….I see how often she is confused and how very "off" she is on her days/nights. Today she soiled her pants and still refused to take a shower after b/c "she cleaned herself off".

I'm really not sure why I'm posting this - other than I don't really have any support groups at this point. I knew this would be hard but I also I thought all the books I read and websites and videos I watched would prepare me for this journey. And maybe those things helped, but I'm still here thinking I'm screwing it all up.

Anyway - for anyone else who feels this way, you aren't alone. Sending all of us a hug and a message to keep going. And if anyone has any great resources or groups to join - - please pass them on! :)

hiya · May 7

it’s such a crazy journey that nobody wants to be on!!! You are very kind to take in your aunt. If she is beginning to have toileting accidents, I’ve seen people recommend you try a toilet schedule taking them every few hours. You can use the search bar at the top to find similar posts and responses. Sending a big hug.

Niecey2loved1 · May 7

Very kind of you to take your aunt in. My aunt has dementia also, but I live out of state work. She does have other nieces nearby, but neither of them have offered to take her in. Honestly, I can't say I blame them.

This is going to be a rough journey that is going to get increasingly worse and more difficult. Are you sure you know what you're up against? I tried helping my aunt, but she didn't want my help. She wanted what she wanted and not what she needed, which was professional, hands on care.

God bless you. She's lucky to have a niece who cares so much. At the same time, don't burn yourself out, which will easily happen trying to take this on.

hraemckay · May 7

https://alzconnected.org/discussion/comment/242520#Comment_242520

Thank you! Do I know what I am up against - probably not. Have I done the research, read books and prepared ever since her diagnosis - yes. I've done all the "tasks" that one would do to prepare - but I'm not sure I'm prepared. I imagine that is normal. :)

My aunt has always been more of a mother to me - and being able to do this for her is such a gift. I've got a lot to learn and the road will be bumpy I'm sure. Appreciate your thoughtful note - nothing about the disease is kind. Sending love to you and your family.

Doug Backer · May 7

I know what your going through, Im a caregiver for my wife. There are good days and bad days. Just leave it up to God and be strong. Because you are a Angel thats why god had you to take care of your aunt.

Quilting brings calm · May 7

All the above… and remember if it becomes necessary to move her to an MC or a nursing home… you are doing that for her, not to her. As you read various posts and discussions here, you will see what reasons everyone has for doing that

Arrowhead · May 9

I have a very large support group of people who went through this before I did. I also learned all I could about it during this entire journey and I still feel as you do. Nothing can prepare a caregiver. Like all things, you can’t fully understand it until you’ve experienced it. You are going to make mistakes; I’ve made some bad ones myself. All we can do is the best that we can and learn to adapt to each new situation. What works for one patient/caregiver may not work for another. Each journey is similar, yet very different. Under “Discussions” above, click on “Caring for Spouse or Partner,” type in “cavalry.” Go to “The Cavalry isn’t coming,” April 5 2023. It’s an excellent post.

tboard · May 9

https://alzconnected.org/discussion/72976/new-to-caregiving-and-i-have-no-idea-what-im-doing

I am an experienced caregiver caring for my DH after having cared for my mother. There are always changes and surprises along the way but if I have learned anything it Is that there is really nothing new. Other people have had the same experiences caring for someone with dementia as I have. My DH also soils himself and no he won't take a shower and if I mention he hasn't changed his clothing in a week he doesn't believe me.

New to caregiving and I have no idea what I'm doing

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