It happened today. I was rushing between personal appointments when my husband, bless him, needed help with the internet. His Zoom class was going in and out and he wanted my help to fix it. Or maybe I just perceived that he wanted my help, at any rate I had 10 minutes to get ready for my next appointment and didn’t have any time for him. So, I said “No, I can’t help you with that right now. If you can’t get it to work, you may have to skip it today.” Yep, I put my own stuff ahead of his and  held to it. Even better, the world didn’t come to an end and he was able to finally figure it out for himself.

What I found most interesting was that it seemed to bother me more than it bothered him that I couldn’t help. I am not good at saying “no” when people ask me for help, it makes me feel like I’m doing something wrong. However, I am now in a situation where if I don’t learn to say “no” sometimes, I never get anything done. Beyond that, I need to learn to let go of the guilt around saying “no” because it means I am saying “yes” to something else that is just as important.

Self-care matters. In the example I shared, I would have missed my own health care appointment had I stopped to work on the computer. I actually considered it for about 30 seconds before I came to my senses and did the right thing. It’s okay to say “no” as long as I know when to say it and don’t overuse it. As long as I am careful to make sure that I say “Yes” when it truly matters, we’ll do just fine.

Actually, I want this to be my plan for everyday. What if I could wake up each morning cheerful and ready for whatever the day brought. Patiently facing the difficult times without getting frustrated or grumpy. Finding a way though with a smile on my face. Recognizing those moments when things are working well and being grateful for any successes I have along the way. Finding peace and satisfaction in my role as a caring, loving partner. Wow, wouldn’t that be great?

But then I remember I am human. My day is going to bring challenges both in my role as my husband’s CarePartner and outside it. Things will happen and I am going to get upset with him, with myself, with the world in general. Hopefully there will also be times when silly things happen to make me laugh. The day will have it’s ups and downs and so will I. My task is to choose appropriate reactions no matter what comes.

It is impossible and inauthentic for me to try to always be upbeat. That doesn’t mean I can’t still be positive. My positivity is based in the fact that I know I have the capacity needed to fulfill my role as CarePartner. If my husband has the strength to fight this disease, then I can find the strength to stand next to him. Perhaps that is the true victory I need to celebrate daily, the simple fact that 14 years post diagnosis we are both still here standing strong in our battle with PD.

I never realized how expensive it is to have a chronic illness in the family. In-home care is expensive as are walkers, wheelchairs, even canes can be costly. Add to that the additional expense from medical appointments and this disease can quickly become a financial burden. Thankfully we have some coverage through insurance but are finding that with elimination periods and co-pays it still can add up. I have found some support through a Caregiver Grant from our local PD Organization and another local organization that provides free Durable Medical Equipment, but there is always something more.

Money that we had put away for our retirement travels is now going towards home renovations like a barrier free shower and taller toilets. It’s really okay though because neither one of us is really into travelling anymore, it’s become too difficult. From that aspect, the changes we are making in our home have even more importance as we strive to make it comfortable for us as we age. I could say that we are working to spoil ourselves with a safe and warm home environment that replaces the exotic dreams we once had.

No one mentioned the financial challenges we would face when he was first diagnosed. Perhaps it is because there was so much else to think about, but it might have been nice to have advance warning. Thankfully my husband was smart enough to make sure we were both putting money away while we were still working so we are okay for now. We also have a wise financial advisor and a team of elder attorneys who are available to help us throughout this process. Thanks to them, I can put aside my worries and believe that as things progress our finances will continue to cover what we need. It’s just not how I anticipated spending our “retirement” funds.

And that progression can mean a change in your role of CarePartner. Life has gotten more challenging in our home as I am called to do more for my husband. We have added in-home care but still I don’t have the free time I had just a year ago. Because of this, I don’t have the time I once had to chronicle my experiences in this journey.

I find value in sharing my observations and I want to continue writing, but find that three times a week is too much. Starting today, there will be 2 blogs coming out each week, one on Monday and the other will be posted on Thursday. That will allow me the time to write meaningful commentary on our day to day lives as well as give me the time to live it.

If you are reading this, I know you will understand. Life gets complicated, changes happen and we adapt.

I find that getting rid of as many of the frustrations around helps me be less likely to take things out on my husband. His diagnosis is disturbing enough for both of us and I know that he doesn’t intentionally do things to get me worked up, it just happens. A great example happened this morning. I was fighting with our printer when my husband mumbled something to me in an effort to help. Already frustrated, I actually told him not to speak if he couldn’t speak clearly. I can’t believe I let those words come out of my mouth. I was upset with the printer and struck out inappropriately at him. I apologized, but the words were already out there.

I hate the changes PD has made to our lives but that doesn’t give me the right to punish my husband for them. He is fighting them constantly and feels them so much more than I ever will. Normally when I get frustrated with something he is trying to do, I remember it’s okay to be angry at the disease but not at my husband, and stop myself before I say anything. When there is something else already bothering me, I am not always able to filter through it and block the misplaced messages.

So, in an attempt to control my words, I work to control my environment. The printer mentioned above is several years old and breaks regularly, it has to go. Just like the warped skillet that I had for years before admitting cooking with it was driving me crazy and tossed it. There was the third toilet in our house that gurgled all the time until I finally shut off the water. The calmer I make our home, the less likely I am to strike out at my husband for things that are beyond his control. We have enough reasons to be frustrated on this journey with PD, we don’t need anything else around that might add to them.

We have been snowed or iced in at our house for several days now and it is starting to get to me. I am sleeping well, but still feel tired thanks to the seemingly never-ending cold outside. I feel like I should be working on tasks that I normally wouldn’t have time for, but my motivation is at an all time low. I don’t even find pleasure in reading right now, I think my eyes and brain are read out. I find myself looking up at the sky and calling out to Mother Nature to just give us a break!

So today, as we start our 6^th day of isolation, I turned to my husband and asked for what we like to call “a grunge day”. No showers, minimal meals and a simplified schedule. He agreed knowing that he can do what he wants, but I plan to take as much of a break from our regular routine as I can. I don’t know what I will do instead, I just need some respite.  

I am still stuck in the house, hoping for a reprieve by the end of the day. I just want to know that I have the option to go somewhere, whether I actually go or not. My husband heard what I needed from him and said yes, let’s hope Mother Nature does the same.

I recently started seeing an acupuncturist. Our first visit was really more about him getting to know me, checking my medical history and figuring out my priorities as he tried to devise the best approach. I went to him because of a problem with my shoulder but wound up talking about so much more. When he learned I was providing care full time for my husband he wanted to know how I am taking care of my mental health. When we finally got to my shoulder issues, he asked why I wanted to address it and my response was “I am the only fully functioning adult in the house, I can’t afford to be broken.” The words surprised even me but was a true and honest assessment of my reality as a CarePartner for my husband.

I mentioned recently that I sometimes put on a mask of normalcy to escape Parkinson’s for a while. What hit me at that appointment was how important it is to take off the mask when working with my own providers. I can’t expect them to give complete care unless they have the complete picture. My PCP needs to know what is going on with my therapist and my acupuncturist just as my OBGYN needs to know what is happening with my mental state. It is all connected and unless it is approached as holistically as possible I can end up with a piecemeal approach. I am the connection in the equation and must be honest and open with all of them so they can provide good care for me which allows me to care for my husband.

Just as my husband has his team of professionals, so do I. There aren’t as many on my team and I haven’t been diagnosed with a chronic illness, but that doesn’t mean they aren’t just as important. My job on this team is to keep them informed, to help them connect when necessary, and to listen to their advice. When I am feeling sick, because it will happen, I can reach out and let the appropriate provider know. It does me no good to hide from my own illnesses or injuries, I should be open and honest if I want to be able to continue the important work I do as a CarePartner. It’s time for me to stop thinking “I can’t afford to break” and instead remember “when I break, I need to seek help and get fixed.”

So much has changed in my relationship with my husband. Some changes were small and happened over a long period of time, others happened rather quickly as the result of a particular event. Responsibilities have shifted, needs have grown, symptoms have progressed. I knew it would happen, I am not sure I was prepared for the reality of it all. Perhaps that is just the way things are when the one you share your life with is diagnosed with a chronic disease.

When I look back on our journey it is with curiosity, not regret. I find myself wondering how we got to this place and where we will be going next. Many activities we used to do are gone and others have taken their place. We are not where either of us expected to be at this point in our lives, yet our relationship is still strong and vibrant. Our moments of intimacy look very different and yet still we manage to come together and share in the fulfillment of our love.

Morning cuddles, holding hands, touches as we pass, quick kisses just because, private jokes, candlelight dinners, afternoon aperitifs. We seek out new ways to share our feelings when the old ones become too difficult. The challenges of caring for someone I love will always be there, it is essential that I make sure the rewards are too.

I have written before about hypomimia, the facial masking that comes to many with Parkinson’s Disease. It’s a freezing of the facial muscles that limits movement and can make communication difficult. I realized recently that my husband may not be the only one who struggles with a mask, thanks to his diagnosis I wear one too. Mine is there to tell the world that all is well regardless of how things really are inside. I hide behind a smile, and yes, it definitely limits my ability to communicate.

We went to lunch with a group of old friends yesterday and that mask was firmly in place. They asked how we were doing and I shared a bit but basically told them “everything is fine”. I think that I wanted yesterday to be an escape for both myself and my husband, I wanted to pretend for a few hours that PD didn’t exist and just be with friends from outside that world, people we knew before. I did check in with my husband on a regular basis but otherwise my mask of pretension stayed firmly in place and we had a wonderful visit. Group activities are not the place to take off the mask, I will save that for one on one opportunities. 

I want our friends and family to know what is happening with my husband’s PD, but I also don’t want that to be the only thing they know about us. It can be overwhelming for anyone and we could have spent the entire afternoon simply discussing it. I want them to know us for who we were and who we are now beyond the diagnosis. If that means I sometimes mask my life with a smile, then so be it. Those who know us best will always see beyond it and recognize what’s truly going on.

Many of the jobs I have held involved helping others, but never to the point of one-on-one care and I understand why. Being a full-time caregiver was never my particular passion or skill set until it became essential thanks to my husband’s diagnosis. Now that we have someone coming in to help, I have been thinking a lot about the differences between her role as paid caregiver and my role as CarePartner. She has a weekly 4 hour shift, I have a daily 24 hour one, maybe there are some things to learn here.

If this were my  job instead of a role I have chosen out of love, I would have a defined time frame and boundaries around what I do. There would be time every morning for me to get ready before starting work and I would have scheduled breaks. I would receive training, no actually I would be required to have training and certification. There would be safety regulations in place to protect me and the person in my care. I would go home at the end of my shift so I could rest up for the next day.

What are my takeaways from this? Would it be beneficial to look at what I currently do and how it would change if I were being paid to do it? If I stop thinking of the caregiving component as simply an expectation, can I give myself some of the job benefits without taking away from the personal side of things? Are there boundaries we need to set that would better protect myself and my husband? What about training? Can I implement any changes without impacting our relationship as husband and wife? So much to consider, where do I start?