Defining "self-care" as a caregiver?

AlekoW · July 8

I thought I knew what it meant… I mean, generally, yeah. But for a caregiver of a spouse with YOA, I'm realizing I kinda don't know what that actually looks like. I'm going 110mph all the time and my brain hurts (not to mention my eyes from all the reading, forms, etc.).

I'm looking for hacks & visualization re: what self-care looks like in a day. How do you break things up, not feel guilty if you stand still a minute, 😅.

dcare45 · July 9

Oh boy do I struggle with this also.

I am so sorry you’re dealing with YOA. That is rough. Don’t know where you are in life but I do know that a diagnosis is horrible. I had to quit working early to take care of my DW. Everything that was planned is now changed.

What I take as “self care “. Walking outside for 10-15 minutes every now and then. Posting on a chat site. 1 support group once a month. Getting a chance to change the oil in my truck. A visit or talk with a family member/friend. I take any thing that gives me a little breath as self care/ blessing. Even shaving by myself.
I hear you should maintain hobbies, friendships and outside interests however I find that a bit difficult. I can’t find the time to enjoy a hobby in my shop for a meaningful amount of time and friends seem to fall away. No fault of theirs. I set a small to medium goal for any given day and claim success.

Taking care of yourself medically is really important. Don’t put off your doctor visits or any symptoms. You have to stay healthy to keep your LO healthy.

Try to find any small joys or victories you can.

H1235 · July 9

I am a planner. I like to be organized. I try very hard to make well thought out decisions. Im a person who always wants to learn more (educate myself) about the difficult situation and obstacles in my life. I want to do things”right”. I want to be in control. These personality traits were fine for me until dementia entered my life. Dementia makes all these very difficult. I sometimes feel I have no control of anything! This is a lot of pressure I put on myself! I try to remind myself that it’s ok if I make a mistake and I’m not always going to be able to find the answers (sometimes there just is no right answer). No right answer is really hard for me to accept. It took me way to long to realize that I needed medication for anxiety.

tawnyalynne · July 9

I understand. My husband is very organized as well. He has posterior cortical atrophy-dementia. He’s very hard on himself when he loses something, can’t figure out something or forgets. It’s good you try to tell yourself it’s ok. I try to remind him of that as well. Writing down what you want to do for the day and checking it off as you do it helps too. You are doing your best. That’s all any of us can do.

H1235 · July 9

https://alzconnected.org/discussion/comment/276972#Comment_276972

Haha, I wasn’t very clear in my post. Im not the one with dementia my mom is. My frustrations are in dealing with someone who is not rational, a disease that is almost impossible to predict what is next and trying to make decisions when all the options stink.

Timmyd · July 9

I would sometimes write a list of all the tasks in front of me. Next to each task I would put stars. One start meant the task was started, two stars meant I was in the middle of of the task, three stars meant the task was complete. Even though there would be some tasks with no stars, being able to look at the sheet and see some stars helped me understand that I am making progress and heading in the right direction. I would keep the completed tasks on the list and always just add new tasks to the bottom.

Call me Gram · July 10

https://alzconnected.org/discussion/76507/defining-self-care-as-a-caregiver

I am a person who wants to know all I can about whatever I am dealing with… which means I dove deeply into reading all about Alzheimer's disease (how to be a better care-partner, how to delay progression, what treatments are available, etc). Every moment of downtime was spent reading and researching. My counselor convinced me this was not healthy - it was too much, and she suggested that I limit my research time. For example: no researching on the weekends, no researching after 6:00 PM, etc. That helped a lot. I learned to stay in the moment. It's not a bad thing to plan for the future, but fretting over it was not helpful. So, I made appointments with DH's doctors, my doctors, an elder care lawyer, and our financial advisor. I wrote down my worries and relegated them to the appointment times.

Now, I limit my time reading/researching, especially when I feel myself getting anxious. Also, anxiety meds have helped tremendously. 🙂

@jgreen posted this video link on another discussion [What To Do After a Dementia Diagnosis - https://www.youtube.com/watch?v=4DM5DBWAi2g]. It helped me to understand that I needed to slow down and focus on right now - taking one step at a time. Being prepared is not a bad thing, but rather than spending every waking moment trying to figure out the next 5 or 10 years, I learned to focus on what is most urgent today.

From the video, I found an analogy to my own life. When I drive through the mountains in MD to visit family we often run into some type of fog on the highway. As soon as I see the fog ahead, I slow down and focus on what's in front of me. The fog is hiding what is further ahead, and I do feel afraid… but, I take a breath and slow down. When this video showed me that analogy, it helped me to put things into perspective.

So slow down, breathe, pray (if that's something you do), and take time to enjoy the happy moments. Come here for support and advice, and give yourself lots of grace.

Wishing you the best,

Gram

jgreen · July 10

https://alzconnected.org/discussion/comment/277041#Comment_277041

Thank you! I too found the video right on target.

~J

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