Harmony, as defined by Merriam-Webster, is congruence or a pleasing arrangement of parts, it is agreement and it can also define a state of tranquility. Usually referring to music, it involves the simultaneous blending of more than one voice to create something fuller and stronger. Isn’t this a great definition of what I, as a CarePartner, should strive for in my life?

I always have been a perfectionist, pushing myself to do more and better, never quite feeling like I had done enough. The concept of bringing harmony into my life is challenging for me because it asks me to slow down and invite my partner to “harmonize” with me. I need to provide the space for his voice and accept a joint approach to our life that involves coordination and even compromise, things I often struggle with.

I want tranquility and peace in my home. I have to admit that it is nice when we can share the responsibilities, the challenges, and the rewards of daily living. In order to do that, I think that I will stop trying to be the diva. Instead, I will work to be a part of the duet so that we can move forward together in harmony and love.

Often it is so much easier to do things myself. No one there to question whether it is the right thing to do or not, no differing opinion on the outcome, just me and my way and it’s done. But, many of the things I am doing now as a CarePartner impact more than me, meaning that my husband may want or need to provide input. That complicates matters.

My husband has always been my partner in everything we do. It seems like PD is trying to put a wedge between us as it limits his abilities. He tires more quickly and can’t accomplish many of the tasks he once did. This puts more of a strain on me as I try to keep up with everything, but just can’t physically do many of the things he did in the same way he did them.

What is the best way to handle those situations when he and I differ on approaches to problems? Do I get to just go ahead and do it my way hoping it works out, or do I need to talk with him about it first? Is it okay if I still do it my way then since I’m the one doing it? Or, do I really need to look for his input and take the time to discuss how we are going to move forward, knowing that it may be the more difficult answer for me?

My husband does not show any cognitive decline from PD which is truly wonderful. I need to remember that he does still have a mind and opinions that need to be heard. Since this journey with PD is primarily his, it is essential that he be an active partner in our daily lives. It is my job to understand that he should provide input and acknowledge that sometimes he may know best. Then I can take that input, modify it to match my capabilities, and find the option that allows us to move forward in a safe and positive way.

I wish being happy were as simple as deciding that it was going to be so. We would wake in the morning with a smile on our faces and it would stay there all day. Instead, life comes with different challenges that make us continuously revisit our desire for happiness as we find our way through.

We all have tough things we face, especially now as we fight the pandemic. There have been days when all I want to do is pull the blankets back over my head and hibernate, however I know that isn’t going to change anything. If I can get myself up, I can take this challenge on with positive energy and find a way to move through this day and share happy moments with my husband.  There will be successes, some things will be tougher and there may even be failures, but if I remember that this will pass and there are better times ahead, we will make it.

So, rather than choose to be happy, I will choose to be positive in all that I do and I sincerely believe that the happiness will be the outcome. 

Everyone may not understand the reference to boxing, but everyone will agree that we have days that are easy and days that are tough and that we always need to be ready for whatever comes. Gels are training gloves, I need those for days when it seems like things are okay. The gels provide some light support for my hands and wrists while also giving me a sense of safety that I can do what needs to be done without injuring myself or my partner. The heavy gloves are regular boxing gloves with support and protection for me that allow me to hit harder and faster. I can fight back with all my strength and not worry about the consequences. These are for those days when PD is coming on strong and I need to punch back to keep it at bay.

What does a “gels” day look like for us? Those are the days when my husband gets up and is able to take his time with breakfast and dressing. We may have some light chores or house projects and he is able to help me with them. We both have things to do and our day seems purposeful and positive.

What can bring out the heavy gloves? There is always a low level of concern or caution when living with someone who has a chronic illness. I listen for unexpected or unusual sounds, and watch for things that are out of the ordinary for him. He may ask for help or I may hear him struggling with a task that was easy yesterday. He may seem frozen or especially quiet. Or, life may have taken a turn and we may be facing some unexpected external challenges. Whatever it is, I keep those heavy gloves close and ready for the next round in this ongoing match with PD.

My husband and I have found that life with PD is easier if we incorporate a fairly routine schedule for our days. This includes regular mealtimes that won’t interfere with meds and naps to conserve energy. But just because we have decided to have a meal at noon doesn’t mean it has to become “routine”. I have found that I can mix it up simply by what I serve or where we eat. It may be breakfast for lunch, a trip to our favorite fast food place or outside for a picnic in nice weather.

Neither of us are into daytime television shows but do sometimes turn on music during afternoon activities. It’s always surprises me that the slightest change to the environment can energize the day and make it more fun for both of us. We have very different tastes in music and it often leads to teasing and jokes as we sing along to old favorites from his youth or mine. Evenings may find us playing a game rather than turning the tube on at all, we love Scrabble and Backgammon even though we may fudge the rules on occasion.

It really is possible to break the routines without breaking the necessary schedule. Give it a try and have some fun today!

My husband and I met through work; he was the guy in the office who always sent out the jokes. He would scour the internet to compile funny stories and then share them on a daily basis. I remember looking forward to getting those emails because they always made our workdays easier. He was also the prankster of the office. I recall the time he convinced a co-worker that there were mice in the office even to the point of bringing in some dog hair and building a “nest” in his buddy’s desk. He loves to have fun.

As his PD progresses, being playful and spontaneous has become more difficult. He often avoids social interactions even though the witty thoughts and comments are still there, because they are slower in coming and can seem awkward or out of place. Reading his facial expressions is more challenging these days which means people don’t always know he is joking and are afraid to laugh, not sure of his intentions. That makes our time together and the fun we can find so much more important.

Finding silliness and laughter in whatever we do makes our days brighter. We have some things we do every day, singing a goodnight song with the dog is one example. I often tickle him while I am helping him dress or sneak up behind him and give him a quick hug. We share the morning “funny papers” and search out comedies to watch on tv. He still has a good sense of humor and often teases me, another way to lighten the load for both of us. Whatever it is that we can do to add fun to our day takes away some of the burden and keeps us going.

I put body first because it truly is the engine that drives everything else. Exercising, getting our blood flowing throughout our bodies, is key in maintaining a healthy brain to support the other components that make up who we are. As a Carepartner, I know how important working out is for my husband, I don’t always remember that it is just as important for me. A healthy body enables me to provide the support he needs and gives me the energy to continue pursuing my personal interests.

Once you are making sure to be active every day, find ways to stretch your mind. I do crossword puzzles and sudoku as a start, but know that if I want to grow I really need to move beyond those. I try to learn at least one new thing every day because I believe that it stretches my brain. At an age when I often enter a room and wonder why I am there, anything that will strengthen those neural pathways has to be good, right?

Finally, take time every day to exercise your soul whether that is through meditation, prayer, journaling or just spending time with friends. I can only spend so much of my time in the CarePartner role before I begin to feel burned out and lost. I find ways to take a moment in my day and reconnect to myself. My husband naps after lunch and that time has become as important to me as it is for him. That hour, while he is sleeping, gives me the moments I need to rest, reflect and refresh my soul. He needs the sleep, I need the quiet, it works great for both of us.

I took over a spare bedroom in our house. I have a desk with my computer, a futon where I can curl up with a book and my cat, a candle and little else. It is a protected space and when I go in there my husband knows not to bother me. Our house is so small that I can hear if something happens or if he really needs help, otherwise, I can escape and be with my thoughts. This has been a godsend for me as we have been on this journey. While PD is always a presence in our lives, when I am in this room I am in control, and I find refuge in that knowledge.

So, what do I do when I am here? I call it checking in with the world, but in reality it is checking in with me. I start by writing in my journal, venting negative thoughts from the day before or celebrating victories. Once my mind is clear, I visit my blog space and write for you all. It gives me an additional opportunity for contemplation, and I hope, may provide a new or different perspective on what being a CarePartner means for you. Finally, I check on my social media sites and connect with friends and family. Then, I am ready to move on and face the challenges of the world.

It is good having a space that I can escape to every day. I try very hard to make sure that nothing else invades this space, however right now there is a pile of clothing that needs to go to Goodwill and the cat litter box has somehow made it in here. We do live in a small house and necessity sometimes overcomes desires. But, I still have my desk, my window, and my computer, perhaps all I need to find my escape and to help me remember who I really am outside of the challenges of CarePartnering and my husband’s PD.

There is much happening in the world today that is outside of our control and then you add caring for someone with Parkinson’s Disease to the mix. While you can try to make life easier for your partner, they are still going to have “bad days” where the symptoms are more prominent or they have other aches and pains that won’t go away. You will also face situations in your daily living such as buttons that don’t work, delayed medical appointments or any number of other frustrations that can get in your way. When things get crazy and it feels like the only direction you are going is backwards, take a breath, pat yourself on the back just because, remember where you are headed and start again.

So much of what is happening with my husband is out of our control. We can exercise to slow down the progression of his illness, but he is still going to move slower and will have tremors for the rest of his life. His smile comes and goes based on what time of the day it is and he struggles to communicate when we are in a stressful environment. Our plans have to include times for napping and we always know that they may need to change based on how things are going an any particular day.

Setbacks will happen but then there will also be times when things get better. We can ride this wave together, looking for the highs as well as the lows, with the knowledge that it will settle out and we will make it through.

I often find myself worrying more about my husband’s well being than my own. After all, I am his primary CarePartner and that carries a lot of responsibility. So, I plan meals and try make sure that he eats on a regular schedule. I watch what he eats to see that he gets his recommended allowance of fruits and vegetables and work to steer him away from unhealthy snack choices. And yes, I sneak extra veggies in whenever I can. But then, I catch myself eating whatever leftovers I find in the fridge.

We both still make our own breakfasts, which works well for us. We plan our other meals together and they are much like the things we both grew up with during the “meat and potatoes” days. We don’t necessarily like the same foods and his tastes tend to run to less healthy options. I can get by on soup or a salad and fruit for lunch, he needs a sandwich. Dinner usually is an entrée and 2 sides, we are still stuck on the food pyramid. Unfortunately, Michelle Obama’s healthy plate hasn’t made it to our house yet.

The Brian Grant Foundation recommends a plant based, whole food diet. They provide great nutritional advice including recipes at https://briangrant.org/nutrition/ for people with Parkinson’s. I know that their suggestions would be healthier for both of us, yet it would represent a complete change in how we shop, how we cook and what we eat. Then comes the challenge of getting him to eat it, we are still fighting the kale battle.