We’re still having the fish battle at our house. I’ve tried a couple of recipes that he forced down and we are currently revisiting fish oil supplements in lieu of fresh fish. I made lasagna the other day and almost chopped a filet up with the meat but decided I didn’t want to chance it. We have 3 pounds of tilapia in our freezer that I think I may get to eat on my own.

I need to remind myself regularly that fighting this disease is my husband’s battle, not mine. I am not the one who wakes up stiff and has to face another day with PD. I am not the one who has had to give up things that I loved to do because my body and mind don’t always want to work together anymore. I am not the one who needs a medication that allows me to function but that also makes me move in unexpected ways.

I am the one who watches those struggles and wants desperately to help. I hear that exercise helps so I make sure we are connected with a program. I am there when he falters, to offer a hand or support. I hear that nutrition helps, so I try to cook healthy foods, but I need to remember that he has a right to his likes and dislikes and I should not force him to eat something no matter how good it is for him.

Anyone care to join me in a good old fish fry?

While it is impossible to predict what changes we may face in the coming years, it would be foolish to assume that life will stay the same, especially since I live with someone who has a diagnosis of Parkinson’s Disease. The symptoms of PD are unpredictable and progressive, even with the most current treatments, things are eventually going to get worse. Add to that any personal changes I face in the next 20 years, even normal aging, and I can see that this time together will be interesting.

Our personal challenges are going to change. My husband’s most prevalent symptoms are tremors, stiffness and slow responses. His muscles are not communicating well with his brain. I, on the other hand, seem to be okay physically but will I be strong enough to provide the support he may need as things progress? And, what happens if my mild forgetfulness that we joke about now isn’t just stress and develops into something more serious? How will we cope then?

We will struggle at times and we will learn to cope with whatever life throws in our way because we know change is coming. We don’t always know what form it will take, but we know that it will happen and we talk about the possibilities now. We have had the difficult conversations and have made long-term plans for care. After caring together for our mothers, we know what it can look like and are open to what we may need to do. The most important thing we have though, is our love. If we use that love and respect as a roadmap, this journey may be difficult but it will never defeat us.

We all have them, the daily list of chores or the “have to”s in our lives. I have to take care of our pets, I have to plan and cook our meals, I have to keep the clutter down to a minimum in our house. Then there is my other list, my “want to”s. I want to go shopping and just wander without a purpose, I want to find a shady seat and read, I want to have a moment of peace without worrying about anyone or anything else. When do I fit those in?

I find that I need to be careful though, because adding a “want to” to your schedule can lead to more “have to”s. I wanted to have a garden, a few tomato plants, maybe some beans and peppers. So, early this spring I actually did it, I cultivated soil, planted seeds and, sure enough, I have a garden. Now I have to water it every other day or it will die. My “want to” became one more “have to” and, while it did bring some joy, I am not sure it worked out the way I expected.

I have decided to make a “want to” list. If I prioritize and decide which things I can make happen today, would it be possible to work them into my schedule? Are they ongoing (like gardening) and, if so, will I still want to do them in the future? I currently have two times during the day that are mine, first thing after breakfast when I write and the hour after lunch while my husband naps. Perhaps I can use those opportunities to meet some of my “want to”s without adding to the “have to”s and find the balance I need in my life.

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.