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?

My life as a CarePartner can be very busy as I try to keep up with the needs of our home and provide care for my husband. I have found that many of my tasks have had to be modified, adapted to fit my current schedule and my current capacity. One great example is cooking for us. I just don’t have the energy nor the time to create masterpieces in the kitchen. Instead I am relying more on tried and true simple dishes that fill our stomachs and don’t stress me out in the process. I do not make things that take more than 20 to 30 minutes of prep and clean-up.

There is one recipe that I wanted to share because it is a great example of simplicity. It has 3 ingredients, 1 pound of Italian sausage, 1 large russet potato and 1 large bell pepper. I spend no more than 10 minutes chopping the vegetables and sautéing the meat in my electric skillet. I add about ¼ cup of water before leaving it all to simmer on it’s own for another 20 minutes. You can serve it with a crusty bread if you’d like but we usually just have it without. I don’t know where I found this recipe originally, but have been making it for decades and the best thing is that my husband loves it.

I have found ways to simplify many of my household chores. I no longer vacuum, I have a robot that does that for me. I no longer do my sheets and bedding, our in-home provider does it once a week. I have someone else who does most of my yardwork, I kept a bit for myself simply to give me the chance to play in the dirt. My point is, as my husband’s symptoms progress, it doesn’t make sense for me to try to do everything. Simplifying wherever I can gives me the time and energy to devote to his care. And that is always my first priority.

I never mean to give medical advice, this is a conversation you should consider having with your medical team. I can only talk about what I have seen with my husband and share our experiences which may or may not be the same as yours. What I can say is that when my husband catches a virus, it often looks totally different from what I would expect. We often don’t see the virus but an uptick in his symptoms. The explanation his doctors have given is that when his body has to redirect energy to fight the infection, PD takes advantage of it and comes out to play.

We have been dealing with this recently. I had a mild chest infection and a few days later my husband woke up very dizzy. The only explanation I could think of was that he might have caught the virus from me. He didn’t present with the congestion I had, but instead his Parkinson’s flared up. His speech was impacted, his brain seemed a bit fuzzier and he needed to use his walker for a couple of days. I called his Primary Care Physician and her office suggested that I watch him and if he did have any difficulty breathing we should head to Urgent Care. Thankfully that didn’t happen and he is now on the mend.

I need to be aware of any behavioral changes that take place because they may indicate something going haywire internally. It is said that viral infections are the number one cause of increases in symptoms for People with Parkinson’s. When things change, especially those overnight changes, I need to reach out to his doctors so they can figure out what is really happening and treat the infection within, not what I am seeing on the outside.