We have a full schedule most days that revolves around my husband’s diagnosis of Parkinson’s Disease. We exercise one hour a day 5 to 6 times a week and take daily walks. He naps every afternoon for an hour and our meals need to be on a timely schedule to meet his medication needs. Add to this the fact that doing anything takes more time now because of the disease and daily life becomes complicated.

When we have the opportunity to do something different, such as meeting with friends, it takes thought and planning to figure out what adaptations we can make and still meet our other needs. Maybe we skip the nap for a day or take a day off exercising and do something active on our own. What I have learned is that he needs to make the decisions, usually on the day itself, of what we can do to make things work, and I need to listen. If he is having a good day, missing his nap probably wouldn’t be a problem, however if he is struggling just to get through, that nap can serve as a “reset” and help him gain control of his symptoms.

So, we work to schedule activities that will not interfere with our regular routines. Most of our friends understand the challenges my husband faces and are understanding if we need to change plans at the last minute. What we are trying very hard to do is maintain those friendships because we know the value they bring to our lives. This journey is difficult enough, we certainly don’t want to travel it alone.  

As I write this, I am watching a taper candle burn. Gravity encourages the melting wax to look for the and fastest and most direct way down. Sometimes the only path becomes engorged and gets blocked, other times the edge drops off entirely leaving the hot wax no path at all. Then, suddenly, a drop escapes over the side and races to the holder below.

There are so many times when I choose to help my husband just to hurry things up. Or I push him to do things my way because I know it is best for me, never thinking about what might be best for him and his situation. Just doing it, getting things done, that is the way I have always barreled through my life. Now, when I am working side-by-side with my husband as he battles PD, I have to slow down and consider choices more carefully. There are times when I need to accept his decisions for his care, it isn’t easy.

Perhaps the message of the candle is that there is always more than one way to get through our challenges. If I to take the time to listen and look at what is happening, I can make informed decisions for my husband’s care. Then, together we can choose the best route forward for both of us rather than just the easiest for me.

I need to be my own “Motivational Coach”. Most of the time I am in uncharted waters and can easily get swept away by the enormity of this CarePartnering task. I am already doing more for my husband than I ever expected and know that even more will be asked as his disease progresses. How can I stay positive and motivated to meet the ever increasing challenges?

The first thing I need to understand is the importance of acknowledging the good things I am doing rather than focusing on mistakes I may make along the way. All of those little slipups are helping me learn how to better care for myself and my husband. Without making the occasional wrong turns, how will I know when the right ones come along?

To this end, I keep a copy of the Caregiver 10 Commandments posted next to my computer. It reminds me that perfection is overrated and that I can’t do it all. It reminds me that there will be days when things are left undone, and that it is okay. The most valuable thing that it reminds me is that other people have walked this path ahead of me and they have made it through, and so can I. I am strong, I am smart, I am loving, and I can be, no, I am a great CarePartner for my husband as we share in his journey with Parkinson’s Disease.

It is so easy for me to focus on what is, or has, gone wrong. Especially if it is something I have done that makes things worse. I took a wrong turn while we were out hiking yesterday and our hike turned out to be about twice as long as planned. I could let that memory define the day but instead I will choose to focus on the fact that the hike itself felt great. The sun was shining and the park was peaceful. We had a much-needed break from life at home. 

Starting my day out on a positive note can be tough. I wake up a bit stiff and achy and immediately find that the cat has made a mess for me to clean up or the dog doesn’t want to take his morning pill. My husband is always there with a sweet “I love you”, but it sometimes gets lost in the morning busy-ness.

If I can make it a practice to take a moment every day, whether it is with my morning coffee or perhaps in the shower, to actively remember something that went well the day before, I can refocus my heart and mind on what is possible. I can look beyond the challenges each day brings and remember that even in the midst of PD with its meds, schedules, tremors and other symptoms, we can still have positive moments and they will be what brings me through.

Beyond accepting this concept, I think that we CarePartners may find that it is essential to embrace it. Understand that if you don’t take care of all your needs, physical, emotional, spiritual, you can’t be here totally for someone else. Taking time for you might feel selfish, but it is more selfish to ignore your needs and try to be the “saint” selflessly caring for your partner.

Attempting to be the ultimate caregiver is an easy trap to fall into. I see my husband struggling with something and I immediately step up to help. Then, the next time we are in the situation, I am there quicker and before you know it, I am doing whatever it was for him instead of letting him work it out on his own. The more I do for him, the less time I have to do for myself. If I stay busy enough caring for him, I don’t have time to make that doctor or dentist or vision appointment that I need but don’t really want. And, honestly, I am taking away his independence and limiting his capacity when I take over all the responsibilities.

His health is dependent on my health, I get it. If I don’t take the time now to see my own care team, there is the chance that I am overlooking something that would mean that I am not going to be here to care for him anyway. And, my mental health is just as important. I need to take those timeouts to relieve stress and alleviate burnout. My goal should be to care for him as a Partner, not a giver, and to work together to promote healthful lifestyles for both of us that will allow us many more wonderful years together.

A few years ago, my husband developed pain in his shoulder. He wasn’t able to lift his arm and eventually lost the use of it almost entirely. Throughout the ordeal his medical team told him that the pain was a side effect of Parkinson’s and that there was really nothing to be done.  He heard this from his PCP and his neurologist. The PCP finally sent him to a physical therapist who ordered x-rays and an MRI which showed total deterioration of the joint due to arthritis. My husband was referred to a surgeon for a complete shoulder replacement. Now, one year later, he has use of the shoulder again and the pain is gone. If only someone had looked beyond his PD diagnosis sooner, he could have been spared several years of increasingly debilitating pain.

I don’t blame the doctors for failing, they are sincerely trying to provide the best care and yes, in this case, shoulder pain can be a component of PD. Where the failure comes in is when they see my husband’s PD and stop there. Further investigation may indicate that the problem is indeed just a part of his Parkinson’s diagnosis, but what if it isn’t? What if there is a treatment that can help and my husband is missing out on it?

My husband has a questionnaire that he completes before every doctor’s appointment. It covers any changes that have taken place and he emails it prior to his appointment so his doctor can review it. We are adding a question to it for our benefit- “What would you tell me about the state of my health if I didn’t have Parkinson’s Disease?” We want to take PD out of the equation to make sure nothing is missed as we struggle to move forward on this journey.

It is said that PD makes our world much smaller as the disease progresses. My husband finds that outings and activities he enjoyed before are just too much work either physically or mentally. I struggle to keep up with the daily tasks of living with someone who has a chronic disease let alone any extra social adventures. There definitely are times when I think about going out but the added challenges keep me from making the suggestion, so yes, our world has gotten smaller.

I came across a quote yesterday from St. Francis of Assisi, “Start by doing what’s necessary; then do what’s possible; and suddenly you are doing the impossible.” This speaks to my heart. If I start my day with the positive thought that I can do what I need to, then it leaves me open to do more. If I can talk with my husband, maybe we can figure out what is keeping us from doing those extra things we like. If we work together, perhaps we can find a way to overcome the difficulties.

We can’t truly know if something is impossible until we give it a try. We may find that our capacity is greater than we think, and our world post-diagnosis doesn’t have to be so small. Maybe we can make the impossible possible again if we try.

We planned an overnight trip to the beach. It shouldn’t be a stressful event, we were staying in a hotel we’ve visited many times before and the weather was supposed to be beautiful. However, we are in the middle of a global pandemic and have been on stay at home orders for over 5 months now. Things are loosening up a bit but the pandemic is still raging, could we actually make this trip safely?

I spent 2 weeks prior to our trip wondering if we were doing the right thing. I am not sure what I expected to have happen, but I knew it would be disastrous. I let my anxiety became a self-fulfilling prophesy as there were issues and the trip was not one of our best.

What if, instead of stressing over what could go wrong, I had accepted that there might be challenges and let them go so that we could be open to the adventures of the trip? What if I had gone with a positive attitude looking for fun instead of negatively dreading what we might find? What if I had remembered that we were going to simply get away and whatever that might mean, it would be okay?

We did go and our world didn’t come to an end. I can look back now and see that it wasn’t all bad, there was a quiet walk on the beach and a very pleasant breakfast experience. We did escape the house for a day and brought back some interesting, and even humorous stories. Will we do it again? We have plans for an overnight in a treehouse for next month, what could possibly go wrong with that?

It may feel like life is piling up on you, I know that there are days when that happens to me. We have pets, we have a home, we have family, all of these things bring their own challenges. I have health concerns, nothing as serious as my husband, but they do require my attention at times. I have my own issues, how can I possibly help anyone else with theirs?

Most of the individual challenges I face come from life choices I have made. I chose to live in a house with a yard and garden, not an apartment; I chose to have a dog and a cat as companions; I chose to have a child and to marry a man with children of his own; all of these choices complicate my life.  I can also make the choice to exercise and eat healthy foods to protect my health and mental well-being. These choices will help relieve the stresses and make me more resilient. Most importantly, all my choices take effort if they are to bring me pleasure and make my life more meaningful.

I remember looking forward to the freedom of adulthood. I now understand that with that freedom comes a lot of responsibility. Life is tough, but I am strong. I can work hard everyday just to survive, or I can look at my challenges as adventures and tackle them with gratitude for all the good things they bring. Living my own life fully allows me the capacity to be here for my partner as we move forward in our shared journey with PD.

When my husband was first diagnosed with Parkinson’s Disease, he asked me if I wanted to leave because “you didn’t sign up for this”. I was quick to remind him that I made vows for better or for worse and I definitely was along for the whole ride. Then I asked him, “what would you do if it were me?” In that moment I think we both remembered the strength of the commitments we had made to each other.

Whichever one of us has difficulties, the other is always here for them. That has held true through challenges we faced when we were still working as well as challenges now that we are retired and spend most of our time together at home. Did we expect Parkinson’s Disease to become a part of our relationship? No, but we are a partnership and partners support each other. I know that if I were the one with PD, he would be doing all that he could to help me, how can I not do the same for him?