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.                                                                                                                                                                         

Our lives with Parkinson’s have become fairly predictable. I get up each day knowing the tasks I will be asked to face and often close myself to the rest of the world. I open the blinds but forget to look and see if it’s sunny outside because I am too engaged in what is going on inside. There are often days when I don’t leave the house, not even making it to my back yard.

Even if it is just a weather check, I need to reach out and know that there is more to life than my husband’s diagnosis and my duties as a Carepartner. I need to remember that each day has so much more to offer if I just take a moment to open myself up to it. Granted, weather can be a barrier, but fresh air always helps me clear my head and can give me a better perspective. And I have a raincoat with a hood that keeps me warm and dry.

I am sitting at my computer desk now looking out at a beautiful sunny sky. My husband’s diagnosis of PD may try to confine me, but as long as I can look beyond these walls I realize there is still beauty and goodness in the world. I’m going to get out and experience it today.

Earlier this week I had a bout with what I think was RSV. The symptoms were slight, more like a mild chest cold, and lasted only a couple of days. It didn’t impact my functioning as my husband’s CarePartner other than I was worried that I might give it to him. Isolating isn’t always useful since by the time I realized I was sick, he had already been exposed. It was no surprise when he woke up this morning and told me he is feeling “crappy all over”. His balance is off and he is lethargic. No fever as yet, but has all the other signs that he may have a virus coming on.

The good thing about this is that I am feeling better and can step up my care to be here for him. I am reaching out to his doctor today but without a fever I suspect the recommendation will be bedrest and fluids. I would rather not take him out while he is feeling bad, it is too difficult for us to navigate. Visits to urgent care facilities and ER’s are distressing and, in my opinion, they often put us at greater risk.

What will have to happen today is that anything I had planned will be postponed. My primary role will shift into caregiver as I help him get through this. I will need to pay particular attention to his med schedule and make sure he stays on track. Exercising and other tasks will go out the window until he regains his strength and stability. Housework can wait, my husband’s well-being can’t.

I lost it recently. We were talking about adding another day of care which my husband doesn’t want at this time, and our conversation got heated. I walked away but the issue was unresolved. We were sitting on the couch watching television an hour or two later and it was still bothering me. I turned to him and suddenly started to cry. I felt lost and didn’t know what to do. It seemed at that moment that I could do nothing right.

My husband appeared shocked, and perhaps a bit frightened, but reacted well. He took me in his arms and held me. I was able to express the feelings I was having, that I wished we didn’t need help either, that I really wished we weren’t facing PD, and that I am trying my hardest but nothing seems to be enough. We cuddled on the couch for a while and talked. He assured me that he knew I was doing my best. We decided to take a break from the discussion about adding a day but both came away from the encounter with a different perspective.

I try so hard to keep things in, to not show my frustration, impatience and sometimes even anger. I stuff it away behind a smile and keep on going. I don’t know what was different that evening, but I am glad it was. Having a breakdown, losing control, gave me a chance to clear the air about so many things. It not only gave me a chance to speak freely, it opened the door so my husband could say things he hadn’t shared as well. It was cathartic for me and for our relationship. I don’t anticipate having cryfests on a regular basis, but hope I can find ways to let go more often so that we can connect and truly share in this journey Parkinson’s Disease has chosen for us.

(This is a copy of our family Christmas letter this year, please feel free to ignore it if it doesn’t apply, or use it to share information with your loved ones during the holiday season.)

Grandpa and I have been hosting the holiday celebrations for decades and you all know what to expect. Since he was diagnosed with Parkinson’s Disease and we see his PD symptoms progressing, that may not always hold true. For example, you may not understand that he can still participate in a conversation if you slow it down and give him time to respond. You probably have noticed that PD makes him unsteady but may not know that means he occasionally falls. Should he fall, you need to know to leave him be and let him get up on his own. It might be important for you to know that he fatigues easily so if he drops off, he’s not being rude, he just can’t help himself. It’s okay for you to ask him if he wants your help, please don’t feel bad if he says “no”.

We both still value the time we get to spend with you all at the holidays, I just need to be mindful of not trying to overdo. When I get too caught up in hosting, I can lose sight of the things I need to do for Grandpa which can cause problems. Some of our long held traditions may need to go away so that we can build new ones that work better for our current situation, I know you’ll understand.

I have revisited our holiday plans in an effort to simplify them. We are definitely going with fewer people, only as many as can fit at our table at any given time. Smaller groups are easier to handle and give us both the chance to engage more fully. This may mean we see different parts of the family at different times or some maybe not in person over the holidays. We can always connect in other ways. And, there will be time reserved just for the two of us before, during and after the holiday rush so we can both recuperate from all the fun we’re having. Please don’t feel bad if we decline invitations or leave early from parties, it’s his Parkinson’s Disease telling us it’s time to go.

I think back to the holidays we have shared with warm memories and hope to create many more together. They may be simpler, they may not be on the actual day, but they will be filled with love. My gift to you this year, remember that what is under the tree isn’t what matters, it’s the love shared by those gathered around it.