Caregiver’s Corner is meant to be a resource and safe space for those caring for people with Parkinson’s. All our contributors have loved ones of their own with PD, and are sharing what they have learned along the way to benefit the rest of our community. This column will post the 4th Tuesday of every month.
When I began my “career” in caregiving in the 70s, I don’t remember seeing much literature about the subject, especially since I didn’t use the internet. Learning about resources amounted to the Yellow Pages and phone calls. My mother had Alzheimer’s and lived in a small town in Southern Indiana, about a 3-hour drive from Cincinnati. Resources were pretty thin, but thankfully the neighbor network was a lifesaver. Her friends would call me when she wandered (she was still driving and wasn’t about to give it up). This was a difficult time because she was still independent and unpredictable in her symptoms. I didn’t really know what was going on for a year or two. The only neurologist visited the town about once a month so her diagnosis was delayed. I knew almost nothing about Alzheimer’s and picked up most of the what was known by muddling through. It was a very stressful time and I felt mostly at a loss. I developed skin conditions, stomach pains and was generally a nervous mess. Luckily I discovered a support group at Deaconess Hospital which made a big difference. I have been a huge fan of support groups since that time. I could write a book about all the things we tried to keep her safe and secure, few of which worked. We had to disconnect her stove so she couldn’t leave it on. We had to get rid of the coffee pot because she put cheese in it. When I called to check on her, she couldn’t find her phone, which caused a worry and calls to the neighbors. You get the idea.
Since she couldn’t cook, we found a source for Meals on Wheels. Two or three weeks after this started, I went over to visit (I was working full-time) and found almost all the meals in her refrigerator. Heaven knows what she was eating. I visited her as often as I could and at first found communication difficult. Eventually,I learned to go with her reality, whatever it was. This lowered her stress level—and mine. I also learned that she liked children’s videos, those about animals, and old TV comedies. I learned that people with Alzheimer’s have the strongest memories of the distant past, so we started going through her old scrapbooks of pictures (there were many). It was a good opportunity to label the people and learn about the events in the pictures. She had an encyclopedic memory of this information as long as it wasn’t recent. This made for enjoyable visits.
When it became obvious my mother could not live on her own, we hired around-the-clock caretakers so she could stay in her home. This made things much better, especially after we put locks on the insides of the doors so the caretakers could go to the bathroom without her escaping.
I took her to her medical appointments, such as they were. There were a lot of decisions to make about her care, a responsibility I found difficult. Eventually, she had a heart attack and I made the decision not to take heroic measures. I’ve second-guessed this decision many times over the years but hope I did the right thing. We enlisted Hospice to help for the few days she lived after that. They were wonderful and she died peacefully. As I look back on this time, I can think of many things I regret that I didn’t do better and some that worked well.
My mother died in 2002, a few months before our son, Tom, was diagnosed with Parkinson’s Disease. As a family, we were totally at a loss about how to find resources to deal with this. As I recall, the Movement Disorder Center at UC didn’t exist (or we weren’t aware of it). He was diagnosed by a local neurologist and a Parkinson’s specialist at Ohio State University. Through a convoluted process I don’t remember, we finally found an APDA chapter in Cincinnati. It was so helpful to find a local resource and a source of support and information. So began my journey with Parkinson’s caregiving. Even though I had worked in health care, I knew virtually nothing about PD.
I soon found this to be true for most health care professionals. We feel very fortunate that the medical resources of the Movement Disorder Center at UC became available during this crucial time.
I got involved with fundraising and informational events and slowly learned the realities of life with PD. Learning as much as possible about PD was vital—and continues to this day. Getting involved with the local chapter was a joy and a support. Most of all, it was a link to information about the disease and resources to help. Working with the APDA chapter and then being involved with the change to Parkinson Support & Wellness, has given me a little sense of control over this situation, plus a lot of work. It has also allowed me to make so many amazing and hard-working friends.
One of the biggest frustrations about being a PD caregiver is sometimes knowing what is best for the family member and figuring out a way to convince him to do it—without nagging. My main approach is to mention an idea and then drop it for a few weeks, if possible, before mentioning it again. Still working on this. Tom lives on his own about 20 minutes from us, which he likes, but also means that it’s more difficult to keep track of his needs, appointments, medications and safety. Communication is essential but sometimes difficult. His independence must be combined with reasonable oversight of the quality of his environment and medical needs. Parkinson’s can cause diminished executive functions leading to memory and organizational difficulties. He recently started using an erasable white board, which is hung on his wall, to keep track of “things to do.” He was able to work, partly thanks to DBS, up until 2019, when manifestations of PD made any kind of work impractical. Dealing with the Social Security Disability process has pretty much consumed both him and his dad since then. He was finally approved a few months ago at age 55 and managed to find health insurance through the Affordable Healthcare Marketplace.
In 2015, my husband, Dave was also diagnosed with PD. We suspected it but the confirmation was a bit of a blow. Luckily, after all the experience with Tom and with working with PSW, we were familiar with the resources and some of the problems he would encounter. As with Tom, I have tried to be a cheerleader of sorts, helping when needed but trying not to be overbearing. Dealing with PD takes a lot of patience and perseverance, for the patient and the caregiver. I try not to get in a hurry and become frustrated with Parkinson’s slow pace. One of the big difficulties is trying to differentiate health issues related to PD and those that are not. Being a caregiver means being a sort of a pseudo-doctor—evaluating which health issues need medical attention and which we can deal with on our own. I find this to be pretty stressful.
I’ve learned to use available resources fairly well (it doesn’t come naturally), and to relax and enjoy music and reading and our 5 cats whenever I can. We love gardening when it isn’t too painful or hazardous—balance is an issue. I try to live in the moment while trying to anticipate and plan for future needs.
To that end, we have established a relationship with a care manager for Tom to take care of his needs if we aren’t available. We have been easing her into her role by having her meet with him regularly and attend some of his doctor appointments. We hope that we can continue this relationship as we age and need more help ourselves. The process is expensive but well worth it.