Respite

CindyBum

As my DW keeps moving more into Stage 6, I've been thinking about how I have fought to get respite this past year and how much I am changed by it…in the best ways.

I retired early, after crashing hard at my new job. Had to take an FMLA I had gotten so low and after having two weeks off with me just sitting in a chair, staring into space, I realized that I needed to be home instead of at work. I don't regret that decision at all and I don't care that I basically failed at my last job after a pretty wonderful career. I know why I failed and I honestly don't give it much thought. I have a much more important job to do and that is to take good care of the love of my life.

The hardest moment for me was having to get a caregiver to help me. Getting over what that meant, the guilt I felt at not being able to do it alone, the story I had to concoct to make it marginally palatable for my DW, when leaving sometimes remains difficult.

But, nearly a year into having a caregiver and her sister that comes now and again when I can go overnight has been the absolute best thing for me. I have recovered a lot of myself. I feel stronger again. I even got to spend last weekend at my undergraduate alma mater, where I was given a lifetime achievement award by the alumni association. If only they knew about my crashing and burning at my last job. Ha!

I had my family with me, an old teammate from my basketball days and a dear friend from UC Berkeley, where I worked before we moved because of my DWs cognitive issues. As I gave my little speech for my award, I got to tell my family and friends how much I loved them and to thank my DW, in absentia, for her support for my career and remark on the incredible power of American universities to change lives like they changed min. An amazing night for me and my family and friends. Plus a fun football game with 56,000 people yelling their heads off the next day. What an invigorating weekend.

Bigger than any of that, which was humbling to say the least, was the realization that I am going to be ok after my DW passes. I will be grief-stricken and heartbroken, but ok. Respite did that for me. I can see now that I have a strong family, friend and community foundation that will hold me up when she passes. Respite did that for me. I felt so alone before and now I don't.

If you feel burned out, please, please try and find space to get yourself some respite. If you think you need help, you absolutely do and it's ok to ask for it…to go get it. I am, perhaps, its biggest advocate on this board.

I am all geared up for whatever the next year brings…whether it's my DW still at home or having to make a hard decision about MC. I won't be doing it from that low, low place I was last year, but from a position of renewed strength and deep love for my DW and those who have supported me on this awful journey.

Jgirl57

Congrats on your Award! A great honor .

Respite is tricky and sometimes comes in different ways . Glad your overnight get aways are going well. When I placed my DH in respite at a MC facility I was so happy to declutter our apartment and get some needed appointments completed. Definitely made me feel better. When he returned he didn’t even notice the changes I had made . Thanks for the reminder to keep respite a priority .

SDianeL

thank you for sharing your experience with respite care. It will help many caregivers here. Congrats on your well deserved award. 💜

annie51

Congratulations on your award! What a wonderful recognition for you.
I can relate to the feelings you have about being ok when this is over. My DH has been in MC a little over a month now. This, too, has given me renewed confidence that I’ll be ok also. While I miss him terribly and everything around me reminds me of him and the life we used to have, I’m also enjoying my friends again, getting exercise, doing a few of the fun things I had to give up. I’m at the airport now on my way to see my sisters who I haven’t seen in years. I break down and cry often but I can handle it. He’s safe and well cared for. I miss him, but I’ve been missing him for a long time now…

Thank you for posting!

harshedbuzz

@CindyBum

Thanks for sharing this. It's reassuring to hear about someone who is benefitting from respite in the ways that you, and by extension your wife, are.

I wouldn't frame your final position as a failure. You were tasked with 2 full-time positions and prioritized the one that mattered more.

HB

Karen711

Congratulations on your Lifetime Achievement Award Cindy- that must feel fantastic to be honored in that way.  Especially in the context of your life right now!

CindyBum

https://alzconnected.org/discussion/comment/258975#Comment_258975

I am so happy to hear you're finding your feet, annie51! A trip to your sisters sound fabulous.

tboard

I am surprised by how little I miss working. I found that I could not work and live with and care for my DH who has mixed dementia. If I could not work and afford a caregiver that would be the best of both worlds. I have to choose one or the other. I also need to put money aside incase I can not care for him at home at some point.

Goodlife2025

Congratulations Cindy on your award. Having retired early a year ago this month and under less than desirable circumstances I can relate to that little voice that brings this up in my mind from time to time. Your post is helpful in keeping my perspective correct on this matter.

marier

Congratulations on your award! Your post was so inspiring to me!

White Crane

Cindy, congratulations on your award! And thank you for your post. I’m glad you had a respite. We all need that from time to time.