The Daunting Prospect of 24/7 Care
Dear Nicholas, When Husband Bob was scheduled to leave rehab just before Christmas, I thought it meant that his health–mobility mainly–was greatly improved. Not so. The physical therapist said he’d need 24/7 care at home for a while. Turns out people are sent home when they have gone a few days, as Bob had done, without improvement. Sure wish we’d known from the start. For one thing, when he walks, he’s still at risk of falling.
24/7? Seriously?
I had my doubts about managing this. I’m one who is bothered by teaching a class because I don’t feel free to walk out at any moment. I always like to have the option.
Now I’ve been at it almost six weeks and, to my amazement, it has been going fine. I hired a helper (harder than it sounds) to be here two afternoons a week and discovered how many things one can get done when time is limited to noon to five.
A Complete Novice
Not having children, there’s a lot I never learned about taking care of someone other than myself. But I’ve picked up a few skills. And Bob is such a good sport about all of this.
I find I’m using care-giving activities as an excuse to slow down on a lot of my own work. Oddly, this doesn’t bother me. Neither does the fact that Bob has for the time being taken over my downstairs home office turning it into a cramped bedroom until he’s able to use the stairs again. I’d imagined I was going to be unhappy about losing my office–but, no.
Most Important
The two of us 41 years ago
As I wrote in December, (To Will One Thing….), things like that don’t matter. The main thing is Bob getting his strength and balance back.
I find I’m not as scared of making a mistake as I was when I first started sorting his meds. Fear of mistakes being a big problem for me, this is a welcome surprise. See November post: I Am A Dangerously Imperfect and Frightened Caregiver.
And then being at this stage of life gives me a perspective I likely wouldn’t have had earlier, I underlined a sentence in a wonderful novel I was reading a couple of nights ago: “we are both of us too old now to fear the great changes of life.” (The Signature of All Things, Elizabeth Gilbert) We’re 76 and one day away from 83.
Maybe the reason I feel fine about my part of all this is because I don’t think we’ll have this 24/7 schedule forever. I know there are many family caregivers who do this for years and years with no end in sight. Those are generous and sturdy souls.
But Bob is getting stronger and we’re happy hanging out here together day and night, which is such a good and somewhat surprising way for this to turn out.
Peggy
Categories: Uncategorized
Tags: 24/7 care at home, 24/7 schedule, care-giving activities, Eiizabeth Gilbert, family caregivers, left rehab, risk of falling, Signature of All Things, taking care of someone, turned out of rehab, use the stairs
Comments
So proud of you and Bob!!
What a great team!!!!
Thanks, Tam! It’s definitely teamwork.
Blessings on you both. You’re doing great, says someone who’s been there. A sacred time, even though difficult. Love you.
Yes, sacred and difficult, Brent. Full of tenderness and deep connection. Love and blessings to you.
I wouldn’t wish caregiving on anyone, Peggy! Having done it for 5+ years. But you seem to be settling into it very well….its good to know it’s not forever. Bob, you’re a lucky man, as I’m sure you know! My best to both of you for continued healing and many mor3 years together!
Five years is such a long time, Judy, as you well know. We’ll see how I do if this stretches out a lot longer than expected (or hoped for.) Thanks for your good wishes.
Thanks for sharing, Peggy. Your words and experiences are encouraging to me, even though I am not in your position. You enable me to apply your common sense, one-day-at-a-time attitude, and faith to my own challenges. Again, thanks.
Thank you, Pat! One satisfying thing for me about this time is feeling useful.
Anticipation, both for the good or the not good, is always worse than the things anticipated it seems.
Agreed, Goody. I tell myself that a difficult experience teaches me what I need to know to deal with that experience.
Peggy, first my best to Bob for healing. As a full time caregiver for my 97 yr old husband, I know the fear and uncertainty you face. After a one week stay in hosp in December due to rare reaction to a drug, he was sent home from Duke with Home Health Care. It has been miraculous the progress he has made but the caregiving is intense and tired is my current. But as Glennon Doyle says, we can do hard things. We can and we do. Peace and blessings as you travel this road, Peggy.
I’m glad the home health care has been so successful, Gail. And your husband sure sounds like a resilient guy. Miracles don’t always show up at 97. We have some of those folks coming too after a stay of Bob’s at Duke, though I haven’t yet seen miraculous results.Bob and I thank you for your good wishes.
Three days of rehab? I don’t know the specifics of your situation but three days sounds just plain wrong. I’m sure your husband is much happier getting his new therapy at home and so glad you both are doing well. I cared for my Mom for 5 years and my siblings did for years before that. Mom was in rehab numerous times but never had just 3 days of rehab. We did experience several times that hospitals tried to discharge her way to early, which we fought and won every time. Just would like to encourage folks in similar situations to thoroughly explore the options. Don’t assume that the facility is doing the right thing for the patient, or the home caregiver.
Three days would indeed be weird. He was in rehab a month. I agree that the patient really does need an advocate. Bob was once sent home from the ER after 10 hours and I vigorously objected. I didn’t win that round, but nothing bad happened so it was okay. You and your sibs are truly veteran caregivers. I don’t know how well I’d handle 5 years. Not well, I fear.
Peggy, you folks have been on my mind alot. It’s alot I know. Please tell Bob to call me when he feels ready for me to come over with lunch for us all ….keeping up the tradition
Wonderful, Bryce! Will do. Thank you.