My journey is not my husband’s journey, but they do intermingle. I cannot measure my successes based on what he does but rather on what I am able to do in my day. I can take credit for helping him when appropriate, but more importantly I need to look to my life and obligations to acknowledge the good things that I accomplish every day. I think that if I stop and take the time, I will find that I have a lot of little victories that I don’t even realize are happening.

A lot of the things I do are automatic, cooking, cleaning, laundry, but still they are accomplishments that should be acknowledged and, yes, celebrated. For example, I worked in the garage tidying up yesterday, I spent 2 hours volunteering at the museum, I prepared our lunch and dinner meals and took the dog outside to avoid accidents in the house. These are all things I do in addition to my duties as a CarePartner. While these tasks may seem trivial, they are a part of the load I carry and wouldn’t be done otherwise.

My life is busier thanks to my husband’s diagnosis and yet I am still able to take care of the basics and more, and I need to know that it is okay for me to feel pride in my work. I finished writing this blog, yay! Now it’s time for me to move on to the next accomplishment of my day.

I have been thinking about the past a lot lately, remembering the things we did together before PD and even before his symptoms got so bad. I think about traveling to unique destinations like the island of Moorea or our more recent trip to the United Kingdom. I think about local activities, participating in 5k walks and going hiking on our own in the gorge. Those trips were good and bring smiles to my heart, but even more than that I think about the day-to-day issues we have overcome and find real peace and thankfulness.

It has become the little things that really matter. Discovering the fun of trekking poles that allow us to continue our walking practice. Or maybe it’s getting dressed together and helping each other with the minor things like zippers or socks. Making the bed as a team, working around the house, sharing a good book, enjoying each other’s company no matter the challenges Parkinson’s brings to our lives.

Memories are a great way for me to find my positive path but living is how I maintain it. Remembering that my husband is doing his very best and that, when things go haywire, it is the disease and not him. Accepting that we both are aging and will have bad days but that they will pass. Knowing that whenever PD knocks us down, we will get back up together and keep moving forward, that’s the positive core that keeps me going each and every day.

I never have been one to meditate, I find it really difficult to clear my mind and focus on relaxation. The mindfulness practices that I attempted in the past bored me and left me feeling like I was failing because I just couldn’t buy into them. However, the unpredictable nature of my husband’s illness has shown me the value of connecting with each and every moment because I never know what the next moment is going to bring.

Life is interesting for us these days. Yesterday, for example, we had just come in from working outside and were preparing to have a small glass of wine to honor the beauty of the day. All seemed fine as my husband reached for the glasses. His tremor kicked in, a glass fell to the floor and shattered. Before his diagnosis, I would have panicked, now I just look at him and ask him to step away while I clean it up. How does this equate to living in the moment? I was aware of his actions, couldn’t stop them but they didn’t throw me off, and I was able to respond in a calm and even manner.  

Much of this is thanks to the benefit of doing PD exercises with my husband. Components of the programs we participate in encourage us to always be in touch with our bodies. Thanks to his diagnosis, his brain must actively communicate with his arms and legs if he wants them to respond. The physical activity and awareness keeps me present in the moment and provides a greater connection with the world around me. Perhaps it is a version of mindfulness, but whatever it is, I am thankful that I am able to be here and be calm when PD is doing whatever it can to upset our days.

I am regularly being asked to do things that I didn’t expect to do, things to support my husband as his symptoms progress. Sometimes it is fun, taking on a new challenge, other times it is not so fun as I accept tasks that are not terribly pleasant but that must be done, nonetheless. I do them out of love for my husband but need to remember there are limits to what I should be doing and understand when it is time for me to say no, even to him.

Talking through the changing roles we play helps me express my feelings. There are things that I don’t mind doing and for which there are no reasonable alternatives. Some of the things my husband’s disease will ask of me can be done better by someone else and we are open to that when the time comes. Right now, there are tools out there that can help him maintain his independence and I need for him to be open to discuss and try those options whether it be adaptive utensils or grab bars for the bathroom.

Acknowledging that my feelings matter as much as his is key for me as I try to navigate my place in our journey. I need to be able to communicate with him about what I find challenging to alleviate misunderstandings. I have to be able to say “I need this for me” whatever it is and not feel guilty about it. We can look for better solutions together if we are willing to listen fully to each other and consider how to meet both our needs. I will still have tasks that I don’t like, but at least I will know that he understands and that I am respected for doing them anyway.

The truest thing I have learned about PD is the statement that if you’ve seen one person with Parkinson’s, you’ve seen one person with Parkinson’s. This brain disorder presents so uniquely in each individual and can even present differently in my husband based on the day, time of day or the situation he is in. Hunger, lack of sleep or too much sleep, stressful environments, changes in temperature, all of these variables impact how my husband is facing his day and become challenges for me as I try to respond appropriately as his CarePartner.

We live our lives tied to a schedule of meals, meds, exercise and rest, but even then I never know for sure how my husband is going to feel on any particular day. I try to plan all outings or appointments for his “on” times, which are usually mid-morning or afternoon about an hour after taking his medication yet there are still times when PD chooses to interfere and we have to postpone or cancel plans. Yesterday was a low energy day, what is today going to be?

I like to know what is coming next, Parkinson’s keeps me guessing. I suppose that is good for me because it keeps me on my toes. I won’t ever understand the workings of his brain, why this disease is so unpredictable from day to day. Instead, I will focus on where we are in each and every moment and respond to those needs, and we’ll be okay.

It doesn’t take much to knock the wind out of my sails, throw me off course or overturn my boat these days. Said another way, my bucket is often overfull simply with the duties of being a CarePartner and then something else comes along. I go through my days like a tightrope walker trying to maintain balance as I wobble to reach the other end which never comes. And it only takes a slight breeze, or a new predicament, to send me tumbling. Thankfully there is a safety net below.

What does my safety net look like? Well, first of all it is my acceptance that things will happen and I will find a way through. Then, it is taking a breath and looking at the situation with clear eyes. I may discuss the problem with my husband and get his input or I may reach out to others in my network of family and friends. Finally, I try to determine if I can do this on my own or if I need outside help. Once I have a plan, I can take the first step to resolution.

Life is unpredictable and unfair. It doesn’t matter that I am busy caring for my husband or that I already have a full load, additional challenges are going to come along anyway. I can let them overwhelm me or I can acknowledge them and begin to look for solutions. Acceptance, understanding and my underlying safety net will keep me moving forward in this often-tumultuous journey.

I have a tough time admitting that I need help and then asking for it is even more difficult. I was recently put to the test. Our kitchen sink had sprung a leak. I crawled under it to see what was wrong, wriggled all the hoses, but couldn’t find anything dripping or wet. I decided it was time to call for help. The plumber I called was reluctant to commit and finally said he would come out but was backed up at least a month. The leak was small, so I agreed.

A few days later I noticed that the leak had gotten much worse and really needed to be addressed. I found myself again with my head under the kitchen sink and this time was able to determine the cause of the leak. A quick check on the internet and I was able to fix it myself. No need for the plumber after all.

This story may not have a lot to do with Parkinson’s Disease but I think it really emphasizes the creativity and resiliency we have to develop as CarePartners. A leaky sink is something my husband would have taken care of before, now that responsibility falls to me. I tried to get help, but the help was not forthcoming, so I plowed ahead and fixed it myself. I will keep asking for help when I think I need it but will always have a back up plan in my pocket just in case.

I am revisiting this blog that I originally posted a while back to remind me of healthy ways to alleviate the anxieties of the holiday. Hope it helps you too-

Acupressure uses your fingers to massage or apply pressure to identified points on your body to promote healing and is a great way to bring peace to a stressful situation. The first point that I use is called the “Hall of Impression Point” or the third eye. It is located just above and between your eyebrows. Gentle circles with the fingers of the hand can create a calming sensation. Another area to try gently massaging is the “Heavenly Gate Point” inside the upper curve of your ear. The third point that you can easily massage yourself is the “Union Valley Point” found in the webbing between your thumb and forefinger. All of these movements can easily be done anywhere and should be accompanied with my next best tip- deep breathing.

There are many different breathing techniques, these are two of my favorites and that I do often to settle myself. The first is simply to breath in through my nose for a slow count of 5, hold it for 2, and then out through my nose for 5. If this doesn’t get me to the level of calm I need, I can also try shutting one nostril while doing this exercise. The act of constricting access forces me to slow down and take deeper breaths.

I would never let these techniques take the place of my other stress reduction practices, such as my yoga, journaling or walks. There are moments, however, when I can’t strike a downward dog to recapture my zen, and that is when I use these to reconnect quickly with a calmer state of mind. These techniques help me remember that I am strong, I am capable and I am in control not matter what my husband’s PD tries to throw my way.  

The information on pressure points came from the Healthline web site and can be found at Pressure Points for Anxiety; I found the breathing techniques at Relieving Stress in the Moment by Livongo-zen.com.

I am writing this on Boxing Day, a day traditionally set aside during the holiday rush to allow those who serve others a break. I asked my husband if that meant he would be taking care of me today so I could have a rest. He smiled and responded with “Hope you don’t starve.” So, I went to the freezer and pulled out a container of beef stew from last month. Not sure what he’ll be eating today…

I know he was joking but the reality for many of us is that, no matter how much they really would like to take over, our People with Parkinson’s are just not able to be our caregivers. My husband does what he can and is willing to try for more, but it wears him out. So, when I truly need a break, I have to let him know so we can work out alternatives. Usually, if I need a break from him, he needs one just as bad from me. I always keep leftovers in the freezer for those times when I just can’t cook another meal. I have learned to let the housework go, no one is going to care if the dust bunnies pile up a bit. And I know how to prioritize what needs to happen everyday so we can make it through.

If I don’t make taking breaks a priority so I can find ways to step away and catch my breath, I am going to burn out. It starts by recognizing the levels of stress I am facing and ends with communicating with my husband, in a positive way, that I need a day off. It may even be that we take it together, go out for a drive and a meal, or it may be that I prepare his meals and then leave for a few hours on my own. Whatever it looks like, I need to be able to say “I have had enough and need a break”, and then take it, before I end up needing a full-time caregiver too.

My husband and I have been hosting holiday celebrations for decades and our family knows what to expect, or at least they did. Now that my husband’s symptoms are progressing that may not hold true. For example, they may not understand that he can still participate in a conversation if they slow it down and give him time to respond. They may need to know ahead of time that PD makes him unsteady, and he occasionally falls. Should he fall, they need to know to leave him be and let him get up on his own. It might be nice to let them know that he fatigues easily so if he drops off, he’s not being rude, he just can’t help himself.

Of course, before I talk to the kids, I make sure my husband is okay with it all. And, if possible, he should be part of the conversation so he can answer any questions they might have. I don’t want to be a buffer between my husband and our children, I just want to make sure everyone is on the same page so we can enjoy our time together.

Finally, I am going to revisit holiday plans and see if there aren’t ways to simplify them. We are definitely going with fewer people, only 5 or 6 at any given time. Smaller groups are easier for him to handle and allows us both 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.