When we look at the word caregiver, the best definition is someone who helps when you can no longer care for yourself. It’s during these times that you may need the assistance of a caregiver.
For me, I’m still able to bathe myself, fix my hair, prepare meals, and clean my house. But there was a time when I was erythrodermic that I needed help all day long. My husband was there to pick up the pieces for me.
The Weight of Caregiving
There are so many people in this world who need caregivers every day of their lives. This is a gigantic decision for those involved. You want to make sure the caregiver is suitable, trained, and able to withstand the burden.
Could my husband of over 20 years care for me if he had to? I’m not sure.
Over the past year, I’ve had to make some decisions I never thought I’d face. Housework, for example, has become overwhelming. My home is fairly large with several steps, and I’m drained just going up and down the stairs. I couldn’t imagine having to clean them anymore.
I wrestled with the thought of hiring a housecleaner, and ultimately decided it was the best choice for me. It has relieved a great amount of stress. My body lets me know when something is too much. I decided long ago that I’m not a superhero.
Driving and Daily Independence
I got my driver’s license when I was 15 years and 8 months old. Next month, I’ll be 60. I used to drive everywhere—to doctor’s appointments, physical therapy, grocery stores, paying bills, and more.
For the past few months, my arms and shoulders have been affected by psoriatic arthritis, leaving me feeling twisted up. Some days, I need my husband to drive or pick up things for me. I don’t want to risk a car accident. On days when my pain is at a 10 instead of a 3 or 4, I decide: “I’m not driving today.”
Seeking Support and Care
I’ve contacted several agencies about companion aides who can assist with small daily tasks. I know how important it is for me to get my hair done—it’s a big deal for my well-being.
Your lifestyle doesn’t have to be compromised by your condition. Do what’s best for you.
Studies show that 30 percent of people with psoriasis develop psoriatic arthritis, and many suffer permanent joint damage. I have some joint damage and must live with it.
No Shame in Needing Help
We are all affected differently by this disease. It’s not shameful to need a caregiver—even if it’s your significant other. The more joints affected, the greater the need for a caregiver or companion aide.
Some steps I’ve taken to help myself:
- Lightening my load by hiring a housekeeper
- Getting someone to drive me around
- Asking for extra help from family and friends
- Remembering there are caregivers with a passion for helping others
- Asking myself: Do I need a caregiver?
Living Fully Despite Limitations
If you find it hard to care for yourself and manage daily tasks, consider a family member, friend, companion, or part-time caregiver. Lighten your load and know you deserve to live life to the fullest. Don’t let this disease determine your quality of life.
I battle daily with the sufferings of psoriatic arthritis, but I’m striving to thrive and take the bitter with the sweet. Whatever limits me, I will move beyond it and find a way. It’s about doing my best with what I have, using the resources that help me overcome barriers.
His Words, My Truth
I asked my husband, “Are you my caregiver?”
His answer was:
“When you’re in pain, I’m in pain. I have been with you for over 20 happy years. We have had very good years, and I will continue to be by your side all the rest of our years. I love you more than I love myself and will always be there for you.”
I will never fully know the answer to my question.