I’m having a blue day today. It doesn’t happen often, but I just feel tired and apathetic. I don’t want to do anything and yet I am surrounded by things I need to do. So, I am going to pick a project that is outdoors. Yes, it’s cold and wet but I won’t let that stop me. I will go outside and get some fresh air with the hope it will bring a fresh mindset because sitting here in the house looking at undone chores is not going to help.

There are some branches that came down in a recent wind storm. I will bundle up and tackle clearing them away. It shouldn’t take more than 30 minutes and will be a nice break from the things I do inside every day. It’s a physical task that should give me some needed exercise and should get some positive energy flowing. I can complete it quickly and see the results, a win for me. Plus, it will feel so good once I finish and can come inside for a hot cup of tea, another win.

The household chores will still be here waiting when I come back inside but I won’t let them overwhelm me. I know that they will get done at some point, they always do. For now, I am going to step outside (literally) of my regular routine and see if it won’t help me escape the blues, the blahs or whatever it is that is keeping me from enjoying today.

In case you’re wondering, I did go out and pick up the branches. It was so nice that I decided to rake up some leaves too. When I came back in, I was able to approach my inside chores with a new mindset and got most of those done too. It’s amazing what just a little change in routine can do for my mood!

I am writing this at the tail end of the holiday season, a time when I should be looking back at wonderful memories. Instead, I find I am feeling some disappointment and regret over things that didn’t happen rather than celebrating what did. I am stuck in the “what we used to do” syndrome and can’t truly appreciate the wonderful things we do now. Some of it can be attributed to my husband’s diagnosis, more of it to the simple passage of time. When my unrealistic expectations don’t match reality, I find myself left with regrets and disappointment.

How does all of this relate to my life as a CarePartner? It is important that I let go of negative feelings like disappointment in order to be fully here for my husband. But, it is also important for me personally outside the world of PD. Granted there are days when things are not as good as I might hope, but being disappointed is not helping anyone. I need to remember that everyone has struggles. There is value in accepting and appreciating each day for whatever it brings. When I want something specific to happen, I need to be open with those around me. I need to let them know what I expect so they can help me achieve it.

If I analyze my expectations and let go of those that are not useful, like those I was holding around the holidays, then I can start to enjoy what each day has to offer. Using the perspective of what is good about what we are doing right now versus what else we could be doing, will help me connect with my own sense of peace. Just as our lives change, our celebrations will change. It is inevitable and it is okay as long as I am able to understand, ask for what I need and be open to adapting along the way.

“My diagnosis occurred about eight years ago.  This was after two plus years of misdiagnosis of my symptoms as essential tremor.  The first challenge was to learn more about PD, it’s causes, my short- and longer-term prognosis, potential mitigating interventions that were available, and efforts that are being made to improve treatments and ultimately a cure. 

The first decision I had to make was who would be in control of my situation: me or PD. I chose to be in control with accommodations when needed to adapt to the issues created by PD.  While my medical team was a good source of “scientific” information, the ” real life” came from my own research on the internet at sites like Michael J. Fox and the Parkinson Foundation.  This was augmented by networking with local PD organizations such as Parkinson’s Resources of Oregon.” 

I am grateful every day that my husband has adopted this positive can-do attitude. We don’t know where this journey will lead, but we are doing our best to find our way through. By focusing on what we can do rather than what we can’t, we are still able to live fully. Life can be good as long as we remain strong and remember that we need to define PD, not let it define us.

It hit us the week before Christmas in December of 2008. Cold weather moved in from the north and brought snow with it…lots of snow. My husband and I had tickets for a Madrigal feast at Skamania Lodge, 40 miles away, with plans to stay the night. We got up that morning to find the ground covered and snow coming down heavily.

Facing weather reports of blizzard conditions, we bundled up and headed out anyway. Halfway there, I was suggesting that we turn around but it wasn’t an option. We followed a semi which helped clear the way ahead as the roads were closing behind us.

Arriving at the lodge, we were assured that the program would continue regardless of the weather since the players were from the local area. The lodge was decorated beautifully, and we decided to settle back and enjoy our one-night stay.

The program was wonderful and as we went back to our room, we scarcely noticed that it was still snowing. Weather reports predicted the storm would clear off the next day and even though we knew the roads were closed, we weren’t worried. It would all be done by morning.

The next day dawned with snow still falling heavily. By lunchtime, when it hadn’t let up, we began to be concerned. Members of the hotel staff were working frantically to keep steps and driveways clear, but there was nowhere for us to go anyway. We sat by the fireplace with other travelers and discussed our options which were few.

The road was clear to the east; we could go that way with the hope that we would be able to circle back somewhere and head west to our home. There was no guarantee that route would be open when we got there. Our only other option was to stay put and wait out the storm. We had four-wheel drive and chains and would be able to get through once they opened the roads. And, we had to acknowledge that there definitely were worse places to be stranded as we watched the reports of travelers stuck at the airport and the train station. All in all, we weren’t in too bad a place.

We bought swimming suits and tried out their pool and hot tub. My husband’s hair froze when we went for a soak outdoors. For two days, we walked the halls of the hotel and took dozens of pictures of the snow. We visited with hotel staff who had set up a Wii system in one of the meeting rooms to pass the time. We found the lodge’s library and read old Reader’s Digest condensed books between naps. We watched the weather reports anxiously waiting for the “all clear”.

We were in our room that afternoon having exhausted the library, the pool, and the resort menu when we heard that State Route 14 was opening briefly. We had already extended our stay for the next night, but the hotel staff was as excited as we were to see us leave. We drove back to Vancouver slowly and carefully arriving back in town just as we heard that they once again closed the roads. Needless to say, we no longer wish for a “white Christmas.”

Changes in routines are tough for both me and my husband. His symptoms are best controlled when he keeps to a set schedule of meals, meds and rest. Holiday events can disrupt this. Today is a great example, we are going to dinner at my sister’s house. To accommodate the changes in schedule, my husband will be taking his medication on a slightly modified schedule. The drive is short, only about 30 minutes, he may need to stretch out a bit when we get there to loosen muscles that stiffen up when sitting in a car.

Once we get there, he will be faced with additional trials. A different environment to navigate through can impact his balance and gait which may lead to a fall. There will be more people around which means busier conversations challenging his communication skills. He will have different choices about what to eat. Changes in diets, things like too many holiday treats, can interfere with his digestive system.  All of these factors create stress which impacts how effective his medication and even his DBS are when attempting to control his tremors. He will be exhausted when we get home which may even carry over for a day. We have nothing planned for tomorrow so he can rest as needed.

I think that it is important to maintain connections with our family and am looking forward to today’s gathering. I feel that we have discussed the challenges and will be ready for whatever happens. The rest of our holiday activities will be at our house and even more lowkey. We can’t give up everything, instead we will plan mindfully and enjoy the holidays to the best of our abilities without overwhelming either of us.

For more info check out Ask the MD: The Holidays and Parkinson’s | Parkinson’s Disease (michaeljfox.org).

I think it’s time to create a honey-do list for myself. I will post it on the refrigerator and look at it every day. I’ll make it in a format that allows me to add things as they come up and take things off as I finish them. Listing all that I do and all that still needs to be done should alleviate the challenge of trying to keep track of it all in my head. Seeing it all in front of me would allow me to prioritize tasks and make sure the things that matter most happen first.

I often put off doing things not because of procrastination as much as time limits. If I have 10 minutes free, I will try to get several little things done which leaves the bigger projects hanging. Finding open windows of time for the bigger things takes planning, and that doesn’t necessarily work when you are a CarePartner. I think that if I could have just 2 hours once a week to get those big things done, then I could let them go. Instead I get lots of things started and few finished.

The top of my honey-do list for today is to buy a white board that I can use for tasks. I will find a place to hang it and update it regularly. It will remind me of what I am accomplishing as well as what still needs to be done. Hopefully, it will lessen my anxiety as I work through the list or not as time allows.

It’s 12:30 am and the kitchen is calling, “Come join me. Your husband’s safely asleep, it’s just you and me. I’ve got some lovely almond milk you can enjoy alongside a piece of toast or fruit. Come on out, it’s time for just you.” Okay, my kitchen may not actually speak to me, but the peace of the night certainly does.

I used to be bothered by what I thought was insomnia before I realized that it is an opportunity. There is a time in the middle of the night when I can let go of everything. The house is all mine, I can enjoy it without worry or stress. I may have a light snack, read a few chapters in a book or sometimes I write. Whatever I do, it is all about me. I am not up every night, maybe once or twice a week, but it is enough.

To a non-CarePartner this may not make much sense. During the daylight hours, when my husband is awake, I am on constant alert. I live in a state of “what if” staying close and listening to make sure all is well. In the midnight hours, I can relax knowing that he is safe in bed which gives me a sense of freedom. These times are my midnight moments, times I have learned to treasure rather than fight. A bit of unexpected “me time” that I share with only my cat. I’ll take it.

I learned a lot about being a CarePartner from our dog. He was a great companion and loved unconditionally. He was always present in the moment and ready to share in whatever we were doing be it a walk or a nap. When times were rough, he was close by with a lick or belly rub. He reminded me of the importance of playing every day and gave me a reason to get out and walk. His energy was infectious, and he shared it willingly. When he finally wore himself out, he stopped and rested. His life was simple, his needs basic and innate. If only I could live more like that.

As he aged, he taught me more lessons about accepting limitations and loss. Our walks were first to go when he developed arthritis in his back and hips. He no longer met us at the door as his hearing and sight were impacted. Play times were gone and he spent most of his days sleeping. When he started to lose control of bodily functions, we realized it was time for us to say goodbye, his final lesson for us. Losing him was difficult as we move through grief into acceptance and gratitude for the joy he brought into our lives. 

It may seem inappropriate to talk about our dog when writing about Parkinson’s Disease; I am not comparing, simply recognizing the contributions he made to my journey. We won’t be getting another dog now, we have a cat and our lives are busy enough without adding another pet. I am very grateful we had our time with him and for the lessons he taught me. He will be missed.  

I had the opportunity to participate in an event called Caregiver Christmas for the second year in a row. This is a drive through program presented by a local non-profit honoring and thanking family and paid caregivers for the work we do. It is the only event I know of that recognizes me, not because of my husband’s disability, but because of my work as his CarePartner. It is a very heartwarming and emotional experience.

My tendency is to underplay the work I do whether it is helping him with his shoes and socks, coaching him while he exercises or accompanying him to his appointments. I have assumed all of the housework and am the primary connection with all of our community supports. When I actually stop to look at the things I am doing it may not seem like much because it has evolved slowly, but there is always something more to be done. I keep our lives running smoothly and that is essential.

On top of the care I provide for my husband, I also try to sustain others in my Parkinson’s community through my blog and my engagement in local support groups. I work within our greater community volunteering in a local museum, another role I tend to undervalue. I was named their “Volunteer of the Year” and didn’t attend the meeting to receive the award because I couldn’t believe I had earned it. Much of this work is done under the auspices of self-care yet I need to acknowledge that it carries value nonetheless.

I am very grateful to the people who coordinate the Caregiver Christmas event because it makes me stop and reflect on what they are saying. I was about halfway through the event when their words finally sunk in and I started to cry. I am important and what I do matters, not because of my husband’s diagnosis but because of my response to it. Maybe someday I’ll fully understand that it is okay for me to accept the gratitude of others because what I do has value and I deserve it.

I did it again. My husband has a video appointment with his doctor this morning and, while helping him get ready for it, I was bossy and grumpy. The doctor’s office texted a link for the meeting to his phone. He asked me to contact them because we don’t want to do the meeting on his phone. I asked him, politely, whether he had checked email on his computer in case they sent it to both devices. We found the link and accompanying instructions in his spam folder. This is where things got a little heated.

I was frustrated by the slowness of his computer and grumped at him as if it were his fault. Then I criticized his system of email, he doesn’t use the on-line server but instead had to download the message to his outlook account. I struggled with how long it all was taking. By the time the email was open, I was itching to take over and do it myself. Thankfully, instead of taking over I took a moment and was able to help get him ready for the appointment without any further crankiness on my part.

I have tools I can use when I start to feel impatient. I know that it is better to be calm, use positive questions and suggestions rather than bossy directions, not let frustration form my actions. I started out okay this morning when I asked about checking his email, I then needed to step back and let him deal with things until he asked for more help. He was doing just fine getting things downloaded, it shouldn’t be an issue for me how he does it. Trying to take control of the situation when he was already engaged made it more difficult for both of us. I need to respect that he has a process that works for him and that he still has the capability to manage it. Ultimately, I need to recognize that he has his ways of doing things and I have mine and that both are okay as long as they get the job done, a concept that applies to so much in our journey with PD.