How to find balance while caregiving

Gracia, it is better to have that space before you desperately need it. Even though you know this loved person better and can care for them in ways others can't, your care for them is best when you aren't close to the edge.
Try not to neglect your own sleep and nutrition. The best breaks are those you can share with this loved person. Sometimes music can transport you together to a happier time. What wonderful strength love gives us. Thanks for the kind wishes.
I guess there isn't balance.
Bless you both.

Hi, @gratia I'm Scott, and I was my wife's caregiver during her 14+ year war. While I know each patient, their disease, and caregiver are unique, here are a few things that helped me.

First, I realized and accepted that my new life as a caregiver forced a new 'balance' in my life. It varied, but basically was 90-10, where before caregiving, my wife and I were about 50-50. This was the new 'balance' I had to live with. I realized I had to remove a lot of things from my life, but found even deeper meaning and love in those additional demands I had to pick up. The caregiving pendulum's swing as whacky as it got, still left me a bit of time -- even if it tended to be in the wee hours of the mornings.

I agree, the unknown is extraordinarily tough to deal with! My dad was a longtime alcoholic, so I embraced the AA mantra of "one day at a time". This helped me to live more in the moment that I had before. I also had to acknowledge that the unknown is just that -- unknown.

I also taped a quote I like to my bathroom mirror, so I'd see it every day. It is this: "Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day that can only manage to whisper 'I will try again tomorrow'"

Strength, Courage, & Peace

@gratia
Hugs and virtual support your way. 🫂
You asked how we know we need a break. Personally, I know it's past time when I start losing my temper with my husband over something frustrating that he's done, and my voice volume and blood pressure go up.
When my husband is occupied with something I use that time for me, and precious time early in the day is mine before he wakes up then I'm 'on call', as I call it.
There is a respite care facility in our town that subcontracts with Rock Steady Boxing, so he attends that once or twice a month offering me guilt-free time alone.
I hope you find a safe place you can take your loved one and you get a break. 🌺

I try different things at different times. It is vastly different day to day, hour to hour with my Mom due to Lewy Body. But, all dementia has similar issues. If there's an instant fix, perhaps an app to tell me, that would be great. Trial and trial, what works one week might not the next.

When I'm more stressed, dealing with something (dental work right now), etc, I take more "me" time and do my best not to feel guilty. I have a fun project going on now - making about a 5-foot artificial clam and pearl for a stage - and I'm doing paper mache and having a blast. I work on it a few minutes a couple times a day.

Just a few minutes of something fun can release some stress, increase endorphins.... or just bring a smile.

We are with you.

Hi Judy,
Thank you very much for sharing your ‘routine’. I have a similar early morning quiet time which I cherish…then same as you, I’m “on call” the rest of the day. I’m ok with it generally, having accepted the situation. But I too find myself “snappy” and not feeling well- then I know it’s deep breathing time or better yet a break.
The nights are hardest when she’s waking multiple times for bathroom. It’s all a balancing act. I appreciate your comment and I send you much support & love during this challenging journey. ❤️

@tracidw Hi Traci,
I understand and agree… it’s different day to day here too, and we do the best we can with steady schedule and giving consistent care. I get very tired from the nocturia wake ups all night. But I keep reminding myself it’s not forever and this is the only option right now.

I love that you’re building a set! I worked in theatre in a past life doing props, then moved onto wardrobe and finally settled in as a makeup artist for years in LA. Honestly, I miss my life & I am grieving that loss. I write short stories during early morning quiet hours, when possible, but I miss freedom. Sometimes this feels like being under house arrest. I’m not one to sit still or watch tv for hours…so the experience has been testing my ability to be patient and find other ways to create and still stay connected with my inner life.
Sending you love and support and strength! ❤️

@IndianaScott Hi Scott,
Thank you so much for your feedback! I greatly appreciate you sharing your experience and tips on how to manage this chapter. Some days it’s easier to “accept” the situation fully, and when I’m able to just “be” here and now, things are ok. It’s the overthinking and worry on top of physical exhaustion that is the most challenging.
I’m really inspired by your kindness and that you were there for your wife for that difficult period. Thank you for offering priceless virtual support and for being a wonderful human!
Sending hugs! 🤗

@gratia I get it! I'm a writer too and grew up in CA. Now am in TX. I think grieving our own loss is as normal as grieving the loss of who our loved one used to be.

Yes! Making the effort to keep a semblance of one’s creative self alive while giving so much to keep a loved one afloat is no small feat. There are ways to “repurpose” the creative energy and hopefully look forward to yet another chapter of life after this one is over. ❤️

@gratia I try to seek balance by giving up a lot of what I used to do and how I did things. The morning, I wake up first where it's quiet and that helps anchor me. That first hour is key, on the computer on this site, and sometimes setting up whatever we're going to eat for the day since once he's up, I don't want to scramble, especially for dinner. Homemade meat balls, etc. have now taken a back seat to good-tasting store-bought ones with sauce I froze and/or doctored up from a jar. When I start to snap at everything around me, I know it's time to take a mental break. I box breathe, to calm myself down. If I'm dealing with a lot of medical appointments for my husband, I don't fill my plate with my own. Talking to friends about my challenges doesn't seem to help, as they don't understand unless they are in the same boat with a family member. People just don't want to talk or hear about sadness. And I get it. When you feel out of control, if the weather is nice, go outside, talk a walk, sit and listen to the birds, talk to the neighbors if you can, just sit and reflect in the sunlight. And just breathe.......As for the not knowing our down the road outome - which bothers me too - take one day at a time. Try not to think about the unknown because we can't control it, change it, and only God knows the outcome for each and every one of us on this journey. Best, Karla