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.

My needs, his needs, whose needs come first? In the midst of structured days, scheduled appointments, exercise regimes, how do we compromise to make sure everyone is okay? In our house we do it through communication and by being flexible.

The holidays an be a hectic time for us with additional activities that interfere with our everyday lives. We have a lunch date scheduled with family which means my husband will miss his exercise class for the day. Knowing how important it is to him, we are talking about how to make it up. We have exercise videos we can use or we exercise another day, a session we wouldn’t normally be doing. However, that session falls on one of the times I am out of the house volunteering. It’s like dominoes sometimes as we try to juggle his needs with mine. Thankfully, the folks I volunteer with know that his needs always come first and they are willing to work with me on rescheduling my time.

I can be flexible in fulfilling my needs, him not so much. The structures we have in our day are vital if he is going to continue his battle against PD. Sometimes it may feel like I am bending over backwards, but I am thankful that I can be that unstructured and be available to support him in whatever he needs. And when I kiss him goodnight at the end of each day, I can honestly say that my most important need is there right next to me in our bed.

My husband has always had the best attitude about his diagnosis. His focus is on what he can do rather than what he can’t. This “can do” attitude inspires me to do better and creates a positive environment that surrounds us. He is not under the delusion that doctors will find a miraculous cure for PD, but rather that he can still live a good life in spite of his illness.

There are things I did before that I can’t do anymore thanks to this diagnosis. I could sit at home and feel trapped or I can find new ways to engage. As his symptoms progress, we are less out in the world and so I reach out through the internet, connecting with others through webinars and support groups. Social media makes it possible to stay in touch with friends and family. We both read the local paper and watch the local news channel to stay informed about happenings in our community. We make a point to go for walks in our neighborhood and do a weekly grocery run or perhaps have a meal. I know that my in-person encounters are down but still try to maintain some social connections with others.

This shared diagnosis has helped us rethink some of our previous activities. We are spending more time together and it is often not what we expected. I never dreamed we would be working out together, but that has been a healthy change for both of us. I am, on occasion, taking on the role of personal helper. He also continues to help me with minor household chores. Our love isn’t diminished by the challenges we face, instead it is strengthened as we work together to figure out where this path is leading us. Our world isn’t smaller, it’s just become laser focused on those things that matter most. 

I like to talk things through. I can process better by verbalizing a problem and then brainstorming solutions to it. My husband has a very different method for problem solving. He analyzes the situation quietly and then moves forward. When I find him deep in thought, I can’t help myself, I like to make suggestions. I try not to be upset when he chooses to go in a totally different direction. What works for me is not necessarily going to work for him. I am not here to fix his issues; I am here to support him in finding a way to face them.

My husband grew up wearing button shirts. He was required to wear them in his work and they became his constant. The only variance was short sleeves in the summer. Parkinson’s made it difficult for him to deal with the tucked shirt and undershirts. I offered to help and suggested that we shorten the undershirts or that he not worry about tucking the shirts in. These options didn’t work for him, instead he asked me to take him to the store where we bought half a dozen sweatshirts. The button shirts hang in the closet and he has found a new “look”.

Stepping back is not always easy for me. I want to make life easier for my husband but in making it easier I need to make sure I am not interfering with his independence. His choice to switch to sweatshirts allows him to continue dressing himself in the mornings which is important to him. The option I offered could have taken that away and PD has already taken enough from him. Support means loving and respecting him enough to let go and let him figure things out. And I’ll be here if, and when, he asks for help.

We have a busy day planned for today. We are going to see my husband’s neurologist this morning and our cat sees the veterinarian for her exam this afternoon. In between the two we hope to have lunch, get a nap for him and exercise for an hour with his boxing program. It’s the kind of day that I usually try to avoid with a lot crammed into a few hours. I expect to feel rushed at least once today and hope that I can manage it with patience and kindness. Is that a reasonable expectation? I certainly hope so.

I have overscheduled us today so I am not adding anything more that isn’t absolutely necessary. Acknowledging the potential for overload is my first step in avoiding it. Lunch will probably be fast food that we pick up on the run, but that’s okay. There won’t be any laundry, housework or other chores today, my plate is already full. And, I will take every opportunity to slow down and breathe as I move through everything we have on our calendar.

Knowing that I shouldn’t try to do too much in my role as CarePartner and actually accepting it are two different things. When I am exhausted, I am not able to do the things I need to do let alone the things I want to do. I realize that I have a load- caring for my husband, caring for our home, caring for myself, and when things got too busy something has to suffer. Unfortunately, it is usually me. Recognizing what is coming, I can work today to make sure that when I finish, I am feeling good about what we have accomplished and okay about what was left behind. After all, there is always tomorrow and sometimes procrastination is a CarePartner’s best friend.