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.

I have been thinking lately about how I cope when things go wrong and find the most common mechanism I use is to spin it. I look at what happened and turn it into a positive, no matter how small that positive appears. When my husband took a fall earlier this year, my spin was at least he didn’t break anything. If I can find a positive note and maybe even a smile (however fake and ironic) before continuing my day, it helps me stay focused on his care.

My spin philosophy extends to the extra household duties I have picked up thanks to his diagnosis as well. When things go wrong around the house, I simply remind myself that at least I have a roof over my head. Or, I can remember a couple of past disasters and remind myself that no trees have fallen on us. There’s always the old reliable, I don’t have to do it myself, I can call a repairman when things happen that are beyond my skill level. That works really well to improve my mood.

Putting a positive spin on things doesn’t mean letting go of the realities of my situation, it simply means finding a way to cope with challenges I face so they don’t impede my ability to function. I think of it as laughing in the face of my husband’s Parkinson’s diagnosis and am encouraged to keep going. Life as a CarePartner is always going to bring difficulties, hopefully I will find a way to face them all with a smile.

The holidays can be a busy time of the year for all of us, however, just because I have more on my to-do list doesn’t mean I have any less on my to-do for my husband list. And, his stuff is usually non-negotiable, it must be done regardless. In trying to keep up with everything, I have developed a couple of questions I can ask that help prioritize my day. Those questions are “must this be done now?”, “is there an easier way to get it done?”, and “am I the right person to do this?”   

Sometimes it just comes down to timing. My husband got up one morning and decided it was the day to put up our Christmas tree. This is an activity we once shared, now he holds the door while I bring in boxes from the garage, watches while I put the tree together and then lets me decorate it. I delayed for a couple of hours to get our basic tasks completed before getting started. The result was that I got the tree up, then took a break for several hours before tackling the ornaments. I realize it did need to be done, but I was able to work on it over a period of time to make it easier. I knew that no one else was going to come and do it for me.

There are times when I have to tell my husband “no, I just can’t take care of that.” He understands and would prefer I let him know how I feel rather than go ahead and try to do something I shouldn’t. We had an example of that recently when the garage door started to beep during breakfast. I told him that I would check on it after we finished our morning routine. Once I got to it, I was able to troubleshoot the problem but didn’t feel safe taking on the repair. We called a technician who arrived within a few hours and the beeping went away.

I know my capabilities and my capacity and recognize that those things can vary based on how our day is going. If I remember that it’s okay to delay, simplify and delegate, then things that absolutely must be done will always get done, and I won’t become overwhelmed and grumpy in the process.

I am finding that the biggest difference in the two roles, besides my age, involves the trajectory of care. When I was raising my son, I looked forward to a time when he wouldn’t need my help anymore. As a CarePartner for someone with Parkinson’s Disease, the opposite is true. My husband’s condition will progress, and my workload will increase. We recently reached a point where I couldn’t keep up and I needed to bring in additional support. While he will have good days, we will never reach the point where we need less support.

With my toddler, I learned to use less words, with my husband I use more as I try to communicate effectively. In both roles my job is to make our environment safer, child proofing with my son and fall prevention with my husband. I live constantly on alert wondering where he is, what he is doing, if he is safe. When caring for a young child I worried when it got too quiet; now I worry about noises that I don’t recognize and rush to make sure all is okay. It often isn’t.

Being a CarePartner is a difficult task that I willingly accept because I know my husband would do the same for me. I understand that this journey will be arduous, and the final outcome will bring great pain. I learn more about this disease and the body as we move forward but even more important, I am learning about myself. I am finding my courage, my compassion and yes at times, the limits to my capabilities. I used to think being a parent was the most difficult task I had ever faced, being a CarePartner tops it. My husband is still the man I fell in love with all those years ago, I can’t let this diagnosis take that away from us. The challenges may be great, but the rewards will always outweigh them.                                                                                                       

The topic of happiness came up in a recent Davis Phinney CarePartner meetup. Connie Carpenter Phinney, Davis’s wife and CarePartner, mentioned a book she had recently read by Oprah Winfrey and Arthur Brooks on finding happiness in your life. After the meeting was over, I googled the book and learned that the name of it is “Build the Life You Want” with the subtitle, “The Art and Science of Getting Happier.” Is there really a scientific method for finding happiness no matter what life throws at me? Is it worth exploring?

Happiness is not something I spend much time thinking about. I have moments during my day when I catch myself smiling about something, but they come and go so quickly. What makes me happy? It may be the birds in the trees when I go out for a walk, it may be the squirrels playing in our backyard, it may be my cat sleeping in the sun. It always happens when I wake in the morning and feel my husband next to me, that knowledge that we have another day to share together regardless of the struggles. Happiness hits, then passes as I move through the constant construct of my day. The things I have to do that bring neither joy or sadness, they simply bring satisfaction and contentment.

Could a book help me find more happiness to share with my husband as we face this disease together? I don’t know, but I think I am going to give it a try. I don’t read self-help books, choosing instead to read mysteries that help me escape my life, not things encouraging me to improve it. I think it might be a good time to give it a try. It might work and at the very least I’ll get a different perspective on living a happier life.

I sat in on a webinar with my husband that addressed the need for a Speech Pathologist to work with people who have Parkinson’s Disease. The presentation was about both speech and swallow challenges and was going really well until they hit us with some cold hard facts, statistics that I had not encountered before. The presenter, Doreen Nicholas who is a professor at Eastern Washington University, said that 90% of people with Parkinson’s will develop speech disorders. She then went on to say that 70% of all deaths related to Parkinson’s can be attributed to aspiration pneumonia. This is the complication that took my father from us 30 years ago.

She works with a program called the Parkinson’s Voice Project. Eastern Washington University is one of 15 grant funded sites that provide speech therapy free as part of a national study. The program she uses is called Speak Out and is based on speaking with intention. She shared a few details about how the sessions are designed, but the bottom line was that they help if someone is willing to do the work. Following a 4 to 5 week program with a therapist, my husband would need to do daily practice if he wants to maintain his new skills.

My husband and I were both surprised by these statistics. He is constantly being reminded to exercise his body, we just didn’t realize that his throat and mouth needed to be included in the workout. He is now on a waiting list for the next session with Professor Nicholas. In the meantime, he has committed to doing what he can on his own to strengthen his voice and throat muscles.  

If you want to check this out for your loved one, visit parkinsonvoiceproject.org. They describe the program and can help you find a provider in your area. You can even try out their daily on-line lessons to see if it is a good fit.

I am not comparing my husband to a child, but sometimes it seems like the best options for providing care are things I learned while parenting. Let me share an example. My son was not a napper, and he was very active. I was exhausted every day until I figured out that if I spent an hour or so of intense one on one playtime, he would wear himself out and then I could get him to sleep so I could get a much-needed midday break. It can also work with my husband.

He doesn’t have a huge problem napping, but I have those days when I need a little bit more time for myself. Mental or physical challenges are very tiring for my husband. I know that if I need for him to rest, we can go for a walk, work on a menu plan for the coming week or simply work out together. The activity is good for both of us, and I am usually able to get at least a 20-to-30-minute break.

My husband and I used to talk about how skills we acquired while raising our children were transferrable to working with adults. We laughed at times when we realized we were even using them on each other. Now they have become essential in my role of CarePartner, especially those around finding patience. I don’t want to imply that my husband is childish, far from it. Things just work better when I use clear and concise directions, have interactions that are not overly complicated, hold realistic expectations and remember loving interventions for when things go sideways, because they often do. Most important of all is acknowledging that he is not my child, he is my partner in life. Everything I do must begin with that awareness so I can make sure I am considerate to, and respectful of, the man sometimes hidden behind the disease.