Caregivers: How do you balance caregiving with pursuing your own wants/needs?

[Clester]

I hope there aren’t too many in my situation.

We have no support at all. So I don’t get to take care of my wants and needs.

If I want time to myself I take it from my sleep time….about once a month I get about an hour to myself when a friend comes and does my wife’s hair or nails and that’s it.

Maybe a couple times a year we meet up with her dad for dinner and he will feed her and that’s the only times I get to eat a meal mostly in peace.

I used to love doing things like making things , many different things…I designed and built a car , a backhoe , a commercial carpet cleaner that uses a car engine, several assistance devices for my wife like an electric fishing pole , a cup.holder that folds away and swivels and is over 10 years old and is still like new , etc.etc.etc. I don’t get to do that anymore. Like our fridge went out a couple weeks ago and the one we found to replace it was just a tiny bit bigger . Just enough to make it a pain to fit in….I had to super rush putting it in between taking care of my wife…..it’s not even close to being right or neat …but it works. I just have to level the trailer to the fridge and let the rest of the trailer not be level.

Would love to take it back out and do it right but that isn’t ever going to happen.

Used to love teaching and practicing martial arts ….no place to do it and no time. Licensed pilot….used to love to fly but that will never happen again….no money , no time.

I sacrifice everything for my wife because I have no other choice and that’s how I was raised.

Asking help from family or friends is like pulling teeth …they are only capable of asking and expecting help from me . Used to love helping others now I despise even being asked.

This has cost me everything and I mean everything….all my “things” …boats , airplane, a show car , all friends , all family, retirement and my health.

But I love my wife and if it costs me my life then I’m ok with that . My only regret is all the time money and energy I spent helping others just to have them all abandoned me when i needed help.

But im ok, i’ve lived and done more than nearly any 2 people put together….ive lived my life. Extremely stressful but I’m mostly at peace caring for my wife.

Even though I don’t get to take care of any of my wants or needs the Positives ,for me ,out wiegh the negative….ive found love !!

[ChristinaC]

Hi Clester,

I am glad your friend helps so you get time for yourself!

I am sure it isn’t easy being the primary caregiver, but you deserve all the praise and more! I am sure your wife is very grateful for you and having you in her life.

-Christina

[Rob]

Clester, you aren’t alone. And I completely understand the sentiment about caregiving, and focusing on others, “being how you were raised.” I am a father whose daughter was diagnosed last year with FA. My wife and I share appointments, but I am the one who ends up dealing with insurance, the doctors, clinical options, etc. I had a pre-existing nasty habit of “putting myself last” already, and my wife and I work full time jobs, so this has been . . . draining. But I wouldn’t do it any other way.

[ChristinaC]

Thank you, Rob for sharing your experiences! I wanted to check in and see how you and your wife are doing mentally, since caregiving is a lot!