Taking Care of Others When You Have Psoriatic Arthritis
Dealing with the constant pain and fatigue of psoriatic arthritis is hard. But, for many of us, we also have to take care of someone else in addition to ourselves. What then?
Being a caretaker with psoriatic arthritis
I find myself in what is called the Sandwich Generation. This group is simultaneously providing care for both their children and their parents.
When everyone is healthy and safe, this might not be such a difficult task. But, when the entire family is struggling with their own health conditions, it can cause stress for everyone.
Our chronic family
My personal blog, OurChronicFamily.com, was born out of my need to talk about how all of my family’s chronic illnesses collide. Nora, my daughter, and I both have psoriatic disease as well as a genetic disorder called Ehlers-Danlos. My husband has Addison’s disease and Type 2 Diabetes.
Shortly after I started my blog, my sisters and I started to notice that my mom might be having difficulty living at home alone. We were noticing serious memory lapses and nonsensical talk that would come and go. She was losing weight and we couldn't be sure she was eating regular meals.
Becoming a caregiver
Very quickly, we found an apartment at Jordan Oaks, an independent living community for my mom to live so she could be closer to my sister, Denise, and me. This also provided us with peace of mind to know that she was eating meals and taking medicines at appropriate times.
With these changes, we realized that my sisters and I were now responsible for her personal, physical and financial well-being. When she needs groceries, we buy them. We ensure that she sees her doctor or that we have health care providers to check in on her. We have become her caregivers.
The stress flare cycle
In the year since her dementia diagnosis, she has had a rapid decline. The confusion and memory loss has had an effect on her emotional state, as well. She calls me multiple times a day and wants me to pick her up and take her home. Sometimes she cries. She is not sure where she’s supposed to sleep at night.
Psoriatic arthritis thrives on stress. The more stressed out I become, the more my pain levels grow. It is a vicious cycle. I have to assign parameters to my caregiving responsibilities, or I will find myself in too much pain to be of any help. After eleven months at Jordan Oak, we've made the decision to move our mother to a memory care facility.
Eleven months ago, independent living with some help here and there was enough, and now she needs to be looked after around the clock, to be sure she gets in bed, eats breakfast, doesn't wander away. The question of whether or not she is doing these things weighs heavy on me.
Spending time with my mother
But just as heavy are the smaller things. The TV in her apartment has been turned to C-Span and she doesn't remember how to change the channel; she sometimes forgets to close or lock her door to the outside when she goes to bed at night; her phone charger isn't plugged into the wall so her phone won't charge.
The move to memory care will mean these little daily problems can be resolved quickly and easily by the people around her, and I will be able to sleep at night knowing that. And instead of acting as a nurse or IT professional on our visits, I will be able to focus my energy on spending quality time with my mother.
Find ways to take care of yourself
When you have psoriatic arthritis and have a responsibility to take care of someone else too, the first thing to remember is the safety speech you hear when you get on an airplane. “Put on your own oxygen mask before helping others.”
If you don’t remember to take care of yourself, you can’t take care of anyone else. Keep going to your own medical appointments. Continue doing the things that help your pain. If you like to do yoga in the morning, do it. If a massage is helpful to you, take the time to do this.
Ask for help when you need it
One of the most important things that I do for myself is my weekly appointment with my therapist. I can talk to her about my pain and the frustrations that I feel because of it. I also talk to her about the stress of caregiving. When I find myself overwhelmed by it all, she helps me find ways to ease my burden. What I usually find is that the burden is one of my own making.
Finally, ask for help. Other family members can pitch in, and they might just be waiting for you to ask for help. You might also consider reaching out to support groups. I seek help from the NC Dementia Alliance for support and advice. Regardless of the condition, there is probably an organization that can offer assistance. If financial resources allow, you might consider a paid caregiver for your loved one.
Living with psoriatic arthritis can be difficult even without the added responsibilities of caregiving. Be kind to yourself and ask for help when you need it.
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