It’s not how much you do, but how much love you put in the doing

When dealing with a disease like Parkinson’s, eventually a caregiver will be needed. I suppose the politically correct term for this person is now “care partner,” at least in some circles. The latter term implies that the care is shared with the person who has the disease.

The journey into caring for a family member or friend with Parkinson’s is typically slow. It usually starts with helping your loved one with simple items such as personal care, getting dressed, showering, drying off, and shaving. It also probably involves cooking, cutting food, cleaning, and household tasks. As the disease progresses, however, caregiving can become a much more involved endeavor.

It’s a complicated balancing act to help my husband, Arman — who was diagnosed in 2009 at age 38 — while allowing him the freedom to try to handle things on his own first. He’s a grown man who’s perfectly capable of asking for help when he needs it. I often remind him to ask when he needs assistance, rather than having me step in automatically and do tasks for him. It’s crucial for him to feel a sense of control and independence, and I do my best not to take that away from him.

Watching Arman struggle, however, can be painful. Often it’s easier for me to just take over and do the task myself, but I usually feel guilty afterward, knowing that he may have been able to complete the task if I’d given him the time he needed. Patience is a skill I’m working on.

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Assessing the risks

Over the past few years, Arman has become a serious fall risk. We were out of town visiting family a few years ago, soon after he had reconstructive shoulder surgery. We were walking in their town on a beautiful sunny day. As we headed toward the restaurant for lunch, Arman lost his balance and fell into the street, nearly missing a moving car. He tore his shoulder again and needed to repeat the surgery almost immediately. We were fortunate that the injuries weren’t worse.

As his care partner, I felt terrible guilt that I couldn’t shield him from this accident.

One of Arman’s most significant Parkinson’s challenges is retropulsion, which is a loss of balance by leaning backward. It’s one of the many causes of falls in patients with Parkinson’s, and often at entirely unpredictable times. This risk is challenging for a care partner. Unfortunately, there’s almost no way for me to prevent these falls, short of chaining him to his recliner 24/7.

The impact on the care partner

Being a Parkinson’s care partner can be overwhelming, particularly because it’s such an unpredictable disease. It’s often scary to think about the future of Parkinson’s and how it’ll progress and affect our loved ones.

Having a sense of guilt is normal for a care partner; I always wish I could do more to help Arman. Because of this, I try to remind myself daily that I’m only one person trying to care for myself and my husband, in addition to dealing with everyday life. This responsibility can be stressful! To compensate, I do my best not to be so hard on myself, to cut myself a break. I also keep my sense of humor and laugh through hard times; it’s much more satisfying than getting down.

As a seasoned care partner, I always remember a beautiful quote, from Mother Teresa’s Nobel Peace Prize lecture in 1979, that helps me keep my perspective during tough times: “It is not how much we do, but how much love we put in the action we do.”

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.