by Kristine Rudolph
IT’S BEEN AWHILE since the last installment of The Caregiver Series, and for that I apologize. It’s challenging enough to generate fresh, new content for you all but getting all my ducks in a row to reach out and follow-up with contributors is an extra layer of complicated.
Before my vacation, we talked a bit about the concept of “do-overs.” I wrote about blogger Katie Allison Granju’s parenting do-over in the context of her son’s death from an addictive disorder. Then, readers and I shared our wellness do-overs, too.
The folks at Unfrazzle liked the wellness do-over piece and wrote to me, suggesting a caregiver’s version.
And luckily, three contributors to The Caregiver Series obliged.
I asked Liz, Sally and Katie what they would do-over, if they could. Below you will find their replies.
Making sure we had better clothing options for my grandmother—options that suited the situation in the nursing facility, as well as her condition.
One of the major issues that we had was when an aide dressed her in a ¾-sleeved top with elastic binding at the sleeve. Normally, you wouldn’t think anything of it, but since she’d had a stroke and now had limited mobility (required assistance with all ADLs, including getting dressed) it actually ended up causing a major problem.
When my mom went to visit at the end of the day after work, my grandmother’s hand had swollen up like a balloon (and no one had noticed all day long!). My mom had to cut the top off of her, but her skin was so frail that the damage had already been done. We spent the next 6 weeks going back and forth to the Wound Clinic for treatment because the shirt sleeve had eroded so deeply through her tissue.
Aside from treating the wound itself, simply taking her to the doctor’s office–which meant transitioning in and out of a car (and required my dad who could lift her), or scheduling and taking the wheelchair-enabled van, then sitting in a wheelchair while we waited to be seen by the physician, etc.—was such a struggle and so taxing/painful for my grandmother that it was an all-day production and at the end of it she was always exhausted.
I dreaded having to put her through that time and time again.
If we could get a do-over for little things like that, which became long-term issues, I think it would have made a difference in her quality of life and in ours as caregivers.
It’s something at the forefront of my mind when I’m designing pieces now. I want to try to prevent injuries by integrating simple solutions, yet provide loved ones with pieces that offer comfort, dignity, and style for the patient-care setting.
(You can find Liz’s designs, Specialized Apparel for the Stylish Patient, here - http://www.lizandett.com. I love that Liz took her do-over and transformed it into a solution for other patients and their caregivers.)
An important thing I would have done differently or sooner into my Dad’s diagnosis of ALS is establish a stretching or exercise routine (2-3x a day) for the person being taken care of.
As my Dad has gotten weaker, it is more difficult for him to move his upper body. Having already had something in place as a routine before this happened would have helped lessen his anxiety and allow myself to feel as if I was relieving his pain and discomfort.
I found it important for my Mom and me to take time for ourselves for at least an hour a day. We go to the gym together while my brother helps care for my Dad. This gives us time to refocus, re-energize, and stay healthy at the same time. We did not start this until about 5 months ago and it would have been extremely beneficial had we done it sooner into my Dad’s diagnosis.
(As someone obsessed with human movement Katie’s words really strike a chord with me. I was just talking the other day with a friend presently caregiving for her mother about how absolutely vital mobility is to wellness as we age. And, I love that Katie and her mom make getting their movement in daily a priority.
Check out my piece on stretching while caregiving for someone in the hospital or other clinical setting here.)
My first thought was not what I would do over but what I was not prepared for.
Looking back I realize I went through the same steps as grieving. First, I was determined to fight for my husband. Then I got mad at him for the situation. Then I felt sad for him, and eventually I resigned myself to the way he is.
This has been a ten-year journey and I felt as if I was robbed of this part of our life. After awhile I realized this is our life and I can either make the best of it or crawl in a hole.
Luckily, we are making the best of it. But, becoming a caregiver for a loved one is a process and not something you are trained to do, first.
Many thanks to Liz, Katie and Sally for (again) sharing their thoughts and hearts with us.
If you would like to contribute an installment in the future, email me at krexploringwellness at gmail dot com.
Editor’s Note: KRISTINE RUDOLPH is an AFAA certified group fitness instructor who specializes in prenatal and postpartum fitness. She publishes the blog, “Exploring Wellness. Together” where the article above originally appeared. You might think her blog would be all about exercise, but it also reflects her many other interests, including parenting, cooking and caregiving. I subscribe to it, and recommend it to others. —David Bunnell
Also by Kristine Rudolph: What to Do if the Caregiver Falls Ill?
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