Who am I (Struby Thelen) to be writing about care-partner stress? I’m a relative newbie at three years post diagnosis.
Many of you have been at it much longer. Youknow about living in the Parkinson’s chaos. You’ve lost jobs, freedom, dreams, well being … and the spouse you knew so well. I’m learning as I go, trying to prepare for the journey ahead.
I believe that God does not give us more than we can handle, and that God helps those who help themselves. I have faith that He will give me the courage and strength to do what needs to be done when the times come, and faith that I will have done what I can to make the best of my and Gil’s life together.
I am a planner. I am most comfortable knowing or setting a goal, exploring the options for reaching it, thus having an idea of likely outcomes. I do a worst-case analysis first (to the great chagrin of my husband), then best-case analysis and options in between. Just knowing that I have plans in place for the most probable outcomes gives me a wonderful sense of ease.
As Gil loves to say, Parkinson’s is the worst possible disease for someone like me to manage. He is SO right. Nothingis certain. Nothingis the same hour-to-hour, much less day-to-day. Nothing(a mood, an ache, an urge) can be fully explained. The end result is rarely known, and certainly there is no “probable” path.
PD is a condition of rigidity, and I have to become infinitely flexible to deal with it. Gil and I both are continually learning what situations stress each other and ways to reduce them, so our life together will go more smoothly.
For me, that means giving up knowing so many details, since planning for potential outcomes is pretty useless; giving up trying to keep my surroundings so neat and organized; giving up thinking I can do it all myself, and focusing on the here and now with my husband.
Go with the flow:
Because so many ups and downs in a Parkie’s day, I have an almost unlimited number of “if – thens” continually to plan for. It is exhausting. This “planning” is the hardest thing for me to let go. I keep telling myself to simply be prepared for whatever happens next.
4I build in more time to prepare for an activity, in case Gil needs me to do something for him that I might not be expecting.
4Some PD medications can cause drowsiness. Soon after going on Sinemet, Gil would have to turn the driving over to me when he got suddenly sleepy. I now brace myself to do more of the driving, even though I’d much rather be the passenger-navigator and read, talk or sew. I also glance at him behind the wheel more often to make sure he hasn’t unknowingly nodded off, as he did once on the interstate.
4If Gil decides it is less stressful for him to take the long route home, I take a deep breath and squelch the urge to say it would have been faster to go another way. For him, keeping moving is more important than fewer miles or fewer minutes.
4Some days Gil moves more slowly. His mental speed is slower. His physical movements are slower. He cannot multi-task as he used to. I routinely build in extra time for him. For example, if he says he’ll be home in 2 hours, I add an additional 30 to 45 minutes before I actually expect him to pull into the garage or before I try to check in with him.
4Traveling is more stressful for Gil: Where is the closest restroom going to be? How can I pack all the things I might need? I now try to carry more of his items and oversee both our belongings through airport security, for example. I accompany him on business trips, just for fun and to make sure I’m there if he needs something, though I will have no role at the destination.
4Gil and I have synced our phone calendars, so each of us can know what the other’s schedule is before making plans.
4I try not to talk as much to Gil about weighty subjects when he is driving, so he can concentrate on where he is going and the traffic around us. I try to plan my need for details around what he is doing or feeling at the time.
4Gil was worried one day because he was going to have to fill out a bunch of papers and I was not going to be there to do it for him. I suggested he matter-of-factly tell the person that he had Parkinson’s, and they would have to write his answers since his handwriting was no longer legible. It must have gone better than expected, because he has used similar lines since then, and others have followed through calmly and respectfully.
4I enjoy knowing details because they give me specific information that I can use to formulate my plans, decisions, whatever. But the particulars are often lost or forgotten by someone with Parkinson’s. I am learning to operate with less information and to be more forgiving when things are forgotten, and Gil is learning better to put up with my need for specifics and my reminders.
Live with clutter:
Neat surroundings put me at ease. Clutter is stressful.
4I try to give Gil the space to do as much for himself as he can. He had taken over a bathroom that I thought needed to be clean in case company drops by. His back-up bathroom now is a little-used one. I rarely go into it, so I don’t have to look at the clutter that would drive me crazy.
4We’ve added more Parkinson’s “stuff” in our household. Weighted tableware now nestles beside the forks and spoons in the cutlery drawer. I’ve trashed little-used glassware to make room for his handled glasses and mugs, which are easier to hold.
4Cigar smokers deal with a lot of natural clutter: home humidor, traveling humidor, cigar cutter, multiple lighters, butane cans to refill empty lighters, cigars, cigar wrappers, cigar bands, ash trays and ashes. Gil tries to keep his lanai “office” neat, but many of those items that he used to keep tucked away are in plain view. Putting them away would mean him taking many more steps around the house, and I try not to make him feel obligated to get up and down from a chair any more than he feels like it at any given moment.
4Instead of trying to keep “public” areas of the house neat all the time, I do a sweeping pick-up just before company arrives. Unexpected drop-ins will just have to understand that that foot-stool or small table is there to assist Gil, even though it does not fit with the decor.
4Clothes don’t get picked up or hung up as often as they did before. So be it.
I am not Superwoman:
Multi-tasking used to be a specialty of mine. I simultaneously and easily juggled being newspaper editor’s wife, middle school PTSA officer, elementary school PTA president, Cub Scout den leader, assistant Boy Scout leader and a member of multiple tennis teams. I expected perfection from myself in every role. These days, my outside responsibilities are significantly reduced so that I have more time for Gil.
4Nurturing the “us” in our marriage is very important to the journey. I continue to evaluate things on my to-do list and tackle those that I think are most meaningful to our marriage, and hand off or ignore the less-important ones. Spending time with him, for example, is more important to me than keeping the house as clean as I once did.
4I still need to vocalize my stresses earlier, so Gil better understands why I respond the way I do.
I have always had a good sense of direction, but on a recent visit to Bethesda, MD, Gil got out of the car at the restaurant entrance and I drove in search of a parking spot so he would not have to walk so far. I had never driven in the area and finally found a parking garage some five or six blocks away, on a side street of a side street. I got turned around walking back to the restaurant. Frustrated, I called Gil for the address, but he did not answer because he’d left his phone in the car. After finding the address online on my phone, I got to the table about 30 minutes later.
The next day, Gil asked if I would drop him at the airport curb with our bags, return our rental car and take the shuttle back to the airport. I said that since he was used to driving in that airport, I’d manage the bags instead.
The following day, I could tell Gil was annoyed about something. When he said he was frustrated because I had him return the rental car, I burst into tears. I had been so stressed about uncharacteristically getting lost walking to the restaurant, all I could think about was: What if I get lost trying to find the rental car return and we miss the flight home? If I’d explained why I wanted him to return the rental car instead of me, he would have avoided being piqued.
4Support networks are truly important. While I am not comfortable – at least right now – in joining a care-partner therapy group, I am very thankful for PD support groups, where ideas and resources can be exchanged among Parkies and care partners, and for private therapy to help with specific issues.
4Gil was always the big-picture partner in our marriage. I was the carry-out-the-plan person. Together we are assembling a group of advisors (financial, tax, legal, for example) who I know I can rely on when the time comes.
4Down the road, I am prepared to ask others to help me help Gil. We are being pro-active in exploring options for down-sizing that include being closer to family and places that offer graduated steps of assisted living.
Together is always better:
Gil’s and my journeys will be different, but we no longer shut each other out. Parkinson’s does not define our “new normal” life together, although it shapes it.
4Gil has gotten to know more of my friends and has introduced me to more of his. I am blessed to have new good friends just because our paths crossed through Parkinson’s. Gil has even attended a monthly meals-prep session that I’ve done with friends for more than 10 years to see first-hand what it is all about.
4His energy levels vary and we can’t do some things we used to enjoy doing together. That Parkinson’s spinning class at the Y will improve my health as well as his, so I go with him when my tennis permits.
4We have significantly more common goals these days and are much more respectful of the activities that are meaningful in each other’s lives. Gil still immerses himself in his community and PD work, and I am included in activities that are important to him, like writing this book. He understands that tennis is a large part of my social and exercise life and will attend a match occasionally to cheer my team on.
Early on, I was asked what it felt like to be a care partner. I didn’t know because in those days I didn’t feel like a care partner. I didn’t feel enough a part of his life to understand what he was going through, and ways to help him were fairly straight-forward.
PD has progressed and I have a much greater sense of what he needs and expects from me. And I know he has a better understanding of what I need and expect from him. That knowledge, thanks to our therapist, has helped relieve a significant amount of stress for both of us.
After a support group meeting at which Gil spoke, a woman came to me with tears in her eyes. In a cracking voice about her husband, who has Parkinson’s, she asked “What can I do to help him?” she asked in a cracking voice about her husband, who has Parkinson’s. I responded with “Ask him what he’d like for you to do.”
Parkies struggle to maintain their independence and not be a burden to their loved ones. For care partners (and family and friends), assuming and doing too much can rob independence and doing too little can make your partner feel like he has to beg for help.
I’ve found that asking if Gil would like for me to help with his socks, for example, gives him the freedom to say “no” – when he’s having a good day and can do it himself – or “yes” – if he’s having a bad Parkie day.
Care partners need to understand their own stress points and find ways to reduce them, while being respectful of what their Parkie’s limits are at any given time.