A Year of 24/7 Caregiving Has Changed Me In 7 Surprising Ways
Dear Nicholas,
My first 76 years of life were decidedly free-wheeling. For one thing, I’ve been self-employed since 1972, setting my own schedules. For years, much of my work was far-flung travel writing. Moreover, I’ve never had responsibility for a child. Domesticity has never been my thing. It has come as a surprise to me that this past year of 24/7 caregiving has changed me in important ways that I value.
Ringing the radiation’s-over bell 3 years ago
My husband Bob, my sweetheart of 43+ years, came home from rehab near the end of 2024 needing someone around all the time, mainly because he was at risk of falls. I had never imagined I was capable of staying home almost all the time (he has an aide with him two afternoons a week when I see friends, buy groceries, etc.)
Learning On The Job
Grandpa Bob 6 years ago
Turns out I can do this and that taking care of my increasingly ailing husband has been, in spite of the losses and difficulties, surprisingly fulfilling and satisfying. In addition to the hard, frightening, messy, tedious, frustrating parts, it has been a time of new intimacy with him and of self-discovery.
The List
Starting with the largest, here are the changes in me.
My mental health is better. The type of OCD that has been with me since age five takes the form of obsessive fear of making mistakes, doing harm,”doing wrong.” I knew as a little kid interested in biology that I couldn’t be a doctor because I couldn’t face the possibility of error. And so handling Bob’s medications initially frightened me. The surprise: I grew accustomed to the responsibility. I don’t live in fear of making a mistake.
Celebrating in an earlier day
Writing is easier. Perhaps because I’m not focusing on it so fiercely, I find that doing my work feels lighter. I’ve recently finished the second draft of a new novel and done so with almost no sense of struggle.
I can do things I was sure I couldn’t. Before this experience, I couldn’t get a splinter out of Bob’s finger because I feared I’d hurt him. Now I can rip off a medication patch without hesitation because I know in a gut way that this is needed and helps him.
Putting out food three times a day isn’t as life-consuming as I thought, even while avoiding salt and over-processed food, etc. Not winning any cooking prizes, but Bob is very appreciative anyway. On my very worst effort, his comment was: “This is an interesting experiment.” He has some memory loss and his mobility is much diminished but he still has his wit and wisdom. He has handled illness with such grace and courage–no surprise–also with such evenness of temper, a bit of a surprise.
I’m accepting help. I can’t manage everything on my own. My dear generous brother Franc is building a wheelchair ramp and walk from our porch to the driveway which will make life so much easier.
I’m physically stronger than ever before. We live in a wooded area and pushing a wheelchair on dirt and gravel from house to car has been a serious workout.
I’m focused on the present. Not thinking too hard about the future, not trying to foresee and solve possible problems in advance. Just trying to meet the needs of the day and that’s a-plenty.
Even with the positive aspects of our situation, I’d of course far rather have Bob in good health, both for him and for me. But it is profoundly gratifying to find surprise gifts at this edge of life.
Hoping all’s well at your house,
Peggy
Categories: Uncategorized
Tags: 24/7 caregiving, accepting help, caregiving has changed, fulfilling and satisfying, mental health is better, needing someone around all the time, pushing a wheelchair, risk of falls, some memory loss, staying home almost all the time, wheelchair ramp and walk, writing is easier
Comments
Amen, dear friend, Amen. Lessons and blessings both.
Heart emoji to you, Brent!
Peggy,wow, this is so inspiring – the notion that things we are sure we cannot do, and things we fear mightily, can be conquered and on the other side of that is a sense of ease with these same things. As you know, I have a family member with severe OCD and as a psychotherapist I also have clients living with this. I’ve been asking them increasingly to push hard into the scary things because it does seem to work well. I do this myself and it’s been amazing to me that things I could not conceive of have been survived. I am sending all my best to you and to Bob. It doesn’t surprise me that he is handling this stage of life with grace and courage. You’re not outside my traveling circle so if you ever need something picked up, dropped off, etc. please just let me know. I can send my phone number for texting to make it easier! We still need to get lunch or coffee sometime too. Thanks for reminding me that we can do hard things! Big hugs to you both.
Thanks so much, Billie. I do wish your family member well with the severe OCD. Wonderful to hear from you and, yes, we do need to catch up.
Peggy, thanks for sharing your caregiving experience. There are so many of us dealing with similar issues. My two brothers, sister and I have been dealing with two parents with dementia for the past five+ years. Dad died over two years ago, and mom is at home with 24/7 care. The four of us kids are in and out constantly at mom’s home. I was just there yesterday. I’m sure after I left last night, within and hour or so, mom would have no memory that I was even there. I try to get mom to think about happy things and make her laugh. Last night I was encouraging her to do “goofy dancing” with me. I bring up fun family stories from the past that she can still remember.
There are funny moments, like the time I was taking dad to a mental health evaluation in Fayetteville at a psychiatrist’s office. The night before I stayed at my parents’ house. That evening dad said to me, “Mike I know you’re busy and you want to get back to Raleigh. So you can just drop me off at the doctor’s office and I’ll hitchhike home.” I responded, “Dad, I know you hitchhiked in high school like the time you needed rides to get out to the northwest to fight wild fires. But you haven’t hitchhiked in years have you?” Dad responded, “Yes I have and now it’s a lot easier since I’m a general.”
All I could do was just smile and laugh to myself. Yes dad retired as a 4-star general after joining the Army as a private without a college degree, but he hadn’t hitchhiked since his fire fighting days.
There are funny moments for caregivers in the middle of a lot of crazy, difficult times.
I’m glad to know that hitching is easier when you’re a general. I think he kept a good sense of humor. I’m sorry you’ve had to deal with all this, though. Often Alzheimer’s stories make me think of the first line of Carrie Knowles’ memoir about her mother. “Last night I dreamed my mother knew my name.” I feel fortunate in not having to deal with that.
Peggy, good on you for “recently finished the second draft of a new novel and done so with almost no sense of struggle”! Please tell Bob I said “hi.” I remember him often from our days of my being in therapy.
Thanks, Moristotle. And Bob sends greetings.
You may have surprised yourself, but from the outside looking in for a fairly long time, you’ve always had all these strengths. Your dealings with Bob’s issues have – for better or worse – simply allowed you to discover these parts of yourself. To borrow from a Good Witch named Glinda, “You’ve always had the power, my dear, you just had to learn it for yourself. . . You are capable of more than you know.”
Keep taking care of yourself – and Bob.
Thanks for this very kind observation and insight, Jim. Will keep in mind the wisdom of you and Glinda.
Peggy, this is a very moving and inspiring story. I realize that, as I grow older, it is important for me to contemplate the new complexities of my life and how I will deal with them. Bob is so fortunate to have you at his side. And I marvel at your ability to find meaning and joy in dealing with these issues.
Thank you, Henry. I sure didn’t think I had it in me, but the more I think about it: I believe we all do. I hope all’s well with you and am betting you are now a fluent speaker of Spanish.
I applaud you, Peggy, for “going with the flow” and finding the grace and the humor in your life now. You did not ask me for advice but I would like to offer some: let your friends know and accept offers of help. I was too private—it’s never been my style to share a lot—and I did not want everyone to know what was happening to this wonderful man who had been the center of my universe for almost 50 years. But I needed that support! The journey is less painful when you have friends there by your side. I wish you happiness.
Many thanks, Sally. I do understand the impulse toward privacy. I’ve leaned in that direction with some long-ago difficulties and found it costly. Right now, I’m pretty open about what’s going on and it helps a lot. I’m glad you’ve had almost 50 years with a wonderful man.
Peggy, thank you for writing and sharing your journey. I alway appreciate your insights. You have risen to the challenge of caring for Bob with such dedication, grace and positivity. Living in the moment is so hard for me to do, but I aspire to do it! You are an inspiration, old friend. I wish you continued strength. None of us know if and when we’ll be in the same situation. 🥰 Nancy
And thanks to you, old friend, for this encouragement. I hope all’s well with y’all.
Although the lessons I’m learning from being a live-in caregiver for my father may be different than yours, this really resonates. Thank you so much sharing.
I’d love to know about what you’ve been learning, Anon!