writing

We all need to find purpose in our lives and the only purpose CarePartners have can’t be “to provide care for my loved one.”

Wow, this is such an easy trap to fall into. I wake up in the morning and my husband is there needing my help to get out of bed. I spend much of my day working with him on his activities of daily living and trying to make sure his day goes well. By the time I help him back into bed at night, I am often exhausted. I used to hear all the words about “self-care”, but I didn’t really understand the importance or how to make it happen in our busy days. His care had become my only purpose.

I’m not sure what it was that finally triggered me but I realized that immersing myself in his disease wasn’t healthy for either of us. Our world was shrinking when everything we did had something to do with Parkinson’s. We had little or no contact outside of the PD world. It was when I started trying to write about things other than our journey that I realized I could have my own interests without taking away from caring for him. As a matter of fact, those other activities that I take part in bring new conversations and have opened up windows in our current situation.

Having in-home care helps me manage my outside stuff but it isn’t absolutely necessary. I can write while he is napping and have connected with some great writer’s groups through the internet. I wouldn’t say that my purpose in life has become to write the great American novel, but it has become to find additional personal enrichment alongside our PD journey. I’ve even joined a social group that has nothing to do with writing or PD and our world hasn’t fallen apart. Caring for my husband is still a big piece of my purpose but caring for me has found its way in too.

The road ahead with Parkinson’s is uncertain and challenging. Having conversations about possible upcoming decisions can smooth the pathway later when they become real.

Looking back on our early years, I was not sure what to expect after we received this diagnosis. My father was diagnosed with Parkinson’s way back when so I thought I had a clue. I was so wrong. Our journey, my husband’s presentation of the disease, has been completely different from what my father faced. What I did know, however, was how ugly it could be and we talked some about that. I had watched my parent’s struggle and wanted better for us. Thankfully, our relationship was already based on regular communication and weekly check-ins so discussing his PD was folded into those conversations.

We discussed how his tremor and stiffness might impact his driving before it became an issue, always focusing on the physical ramifications of this illness. When it came time, it was an easier decision for him to stop driving because we had talked about safety concerns and alternatives. When he needed to stop climbing ladders, cooking, using electric tools, he was open to these limitations because we had already discussed them. Safety and the restrictions of his Parkinson’s Disease were always the reasons, never personal deficiencies. He was not to blame for the challenges we were facing.

Our latest conversations are around how to make sure he is receiving the care he needs. What will happen if we reach the stage where I am not able to care for him or, heaven forbid, if being at home is not the safest option? Parkinson’s Disease brings difficult decisions for both of us. Talking about them before actually having to make them puts us on the same page. It also lets me know what he wants moving forward as well as gives me permission to make those decisions alone should that time come.

If being a Parkinson’s CarePartner wasn’t enough, there will be times when life throws you a curve. Don’t fret because you can’t possibly be ready for everything that happens.

Writing this blog has been therapy for me. I can write about the things that are complicating our lives and know the people reading these words will understand. It’s a great way for me to work through feelings and frustrations. Imagine my upset when the last piece I wrote got lost somewhere in the on-line blog machine that hosts my site and I couldn’t figure out what had happened. It was a major curve in what had been a pretty good day.

I am not a huge techie and suddenly I was seeing all kinds of ugly outcomes. I just knew my blog had been hi-jacked, but why anyone might want to do that didn’t really make any sense. I tried to reach the host site, but they weren’t available by phone and emails were taking too long. I jumped into a dark hole with both feet and was ready to delete the entire blog and close the site. My loving husband  finally suggested that since I had reported the issue it was time to step back and let the professionals do their work before making any rash decisions.

The next morning I finally got my answers. It seems there had been an internal glitch that was redirecting posted messages within the host site and several blogs were impacted including mine. I was assured that no one had hi-jacked my site or done anything nefarious and that they were working to correct the problem.

The lesson I gleaned from all of this was not to over-react. Life is too out of control already and when I felt I had lost one more piece, I lost it myself. Thankfully, all is back in order and the blog can continue. Getting upset didn’t do me any good and things were cleared up in a timely manner. So, my message for today is when life throws me a curve, I’m going to try to act appropriately and keep on doing those things that matter most. We’ll see if I am able to stick to that.

You don’t always have to be the strong one.

There are times, like today, when all I want is for someone to give me a great big hug and tell me that it’s all going to be okay. It’s weird because today hasn’t been a difficult day, no falls or major incidents, yet I just feel the need to let go and let someone else take over for a minute. I really think that having just that minute would be enough for me to release the pressure that builds up. Then I could get on with my day.   

I could turn to my husband, but then I feel guilty because he thinks my stress is all his fault. It’s not. Let me say that again, I know it’s not. I don’t blame him for this disease and the challenges it has brought, nor for the additional responsibilities I have taken on around our house. I see his struggles and the strength he needs to keep going on a daily basis. I certainly don’t want to be a drain for him. Unfortunately, unless I go knock on the neighbor’s door, there’s no one else around and I’m pretty sure they wouldn’t understand.

So, I find a quiet time when I can come to my room, take off my superwoman cape, and let go of all the expectations and duties. I take that minute I need to practice self-calming techniques. I close my eyes and breathe deeply, I massage my face and hands, especially those acupressure points between my eyebrows and between my thumb and forefinger. I wrap my arms around myself and say the words, “you’re okay today” because I know it’s true. I am strong enough to face whatever life as a CarePartner decides to throw at me, I just don’t have to be all the time.

For more information on acupressure points visit the Healthline webpage Pressure Points for Anxiety; additional information on breathing techniques can be found at Relieving Stress in the Moment by Livongo-zen.com.