What is really interesting about this journey with my husband is that, while we are both impacted by his diagnosis of PD and headed in the same direction, our paths are still so different. They will intersect and intertwine, but they are independent roads that we each must follow with unique twists and turns. The scenery is very different based on the perspective you bring to the route.

There are times when it feels like we are on a ship and I have to be the cruise director planning activities to help us get through every day. I am called upon to the be ship’s engineer to make sure things are all functioning properly to propel us forward or the communications officer handling all official correspondence like phone calls and appointments. I like to wear the Captain’s hat the least because that means I may have to make major decisions that could have negative impacts on our lives.

The most difficult component of this journey together are those times when I realize I am basically a passenger watching his struggles. We did not buy ticket for this ride, nor do we have a map for the road ahead, so we can never know when we will encounter sharp curves or rough waters. What I can try to do is recognize and respect the differences between the challenges we each face and then work to provide support he needs at the appropriate times. I can also remember that I am not in this alone, I have a crew of people who are ready to help me when I need it.

Our journey will be difficult at times but it can also be an adventure as we explore what life still has planned for us. Let me embrace a positive attitude as we move forward with adventuresome spirits today!

Being a Carepartner is such a big job in and of itself that we sometimes get caught up in that and forget to do things for us. I want to stress that this about doing for us, not for our partners. If we don’t find the time to care for ourselves in the same loving way we care for our partners, we will burn out and won’t be able to care for either of us.

We all do the things that have to be done to get through the day, without thinking about ourselves. I want to encourage you today to take the time to do something that has meaning just for you. Maybe you need to take a short walk alone or find time to read a book. Maybe your joy comes from gardening or making your favorite recipe. Whatever it is that will bring peace to your soul, make the time and do it today.

Our neighbor came over yesterday and offered to do our grocery shopping for us. She has a young family of her own and yet was willing to take on one of my tasks. It was unexpected and extremely kind of her. I declined because we really needed to get out of the house, yet we did exchange phone numbers and I feel we connected on a personal level. These are the moments, when someone else offers to do something for us just because they can, that I really find my gratitude.

As my husband’s CarePartner, I often feel overburdened and I think it comes from some crazy idea that I have to do it all. I know that letting others help will lighten my load, but I don’t want to burden them or interfere with their busy lives. What I sometimes forget is that when I accept their help it expands our circle of support, not just mine. We both have a chance to start a new relationship, something that is so valuable as this illness progresses. Instead of “going it alone”, I need to open up and be ready to accept help. Then take a moment for gratitude as I open our world to a new friend.

We spent a few days in Vegas last month. Imagine my surprise when, after checking into our hotel, I looked at my phone and learned we were in “Paradise”. Granted it was Paradise, Nevada, but it did make me chuckle. And it reminded me that perception is everything. I am sure that section of the Nevada desert probably did look really good to someone once upon a time and so they named it Paradise. For what it’s worth, being there with my husband was pretty good too.

Daily living as a PD CarePartner may not be what I was expecting from retirement or what I want it to be, but I do have an opportunity to continue sharing my life with the person I love. When the challenges begin to overshadow the joy, I will step back and find ways to protect our precious relationship. The day may come when we need help, including respite, with the understanding that eventually I may not be the best person to provide caregiving services. No matter what the future brings, I will remember that Paradise lives in my husband’s arms and I will do what it takes to protect the joy and the love that we find there together.

Wow, we never know what new problems life will throw at us, do we? As I write this, we are two weeks away from spring and yet we woke up this morning to 2 inches of heavy, wet snow. It was beautiful watching the big flakes coming down, but in addition to the flakes, a tree in our backyard came crashing down and took out part of our fence. Sometimes it feels like someone is trying to see just how much we can take and keep on standing, doesn’t it?

While it is true that I can push through, sometimes it is more important to look at the challenge with clear eyes and mind and decide if I need help with it. In this case, it was obvious that we would need help and I wasn’t sure where to start, so I turned to my husband. We talked about what needed to happen and then I started making calls. There are times when the best way through may be pushing ahead, but it may also be asking for help, or moving in a totally different direction. The best way forward may be to look for help where you always did before PD, from your partner.

As I am faced with new challenges, I will keep an open mind and look for the best way to meet them recognizing that it might not be the most obvious or the most direct. I will acknowledge that my partner is still here and still very much a part of my life. He must be included in decisions about the challenges we face. We are a team and, if we work together, we can meet any challenge that comes our way.

Knowing when to step in and help your partner can be difficult, especially as the symptoms of PD progress. What is easy for my husband one day, or even one moment, may be impossible the next. I try to always be available and to remember to ask if I “can” help, not if he “needs” help.  If there is a reason I think I should step in, I will share that, but he still makes the final decision.

When things are rushed, I offer to help him get ready rather than wait for him to ask so we will be on time. Other times, I will see him struggling with a task and ask if I can help before it becomes too frustrating for him. There are some things that we both know he needs assistance with and I step in automatically. I am especially careful when we are in public to make sure that I do not take away his autonomy or his dignity. He is still a very capable man and I don’t want to step on that while trying to provide support.

Helping isn’t a one-way street at our house, I am vertically challenged and still need to ask him for help reaching items on top shelves. He also helps with other chores around the house that are PD compatible such as vacuuming and emptying the dishwasher. Our relationship may not be quite 50-50 anymore, meaning that my opportunities to help are more frequent than his, yet we are still a team and I need to respect those things he can do and encourage him to do them.

We have an appointment later this week in a town 6 hours away. We will drive there and spend the night before returning home the following day. It is going to be challenging for us and I am not looking forward to it. Having said that, I recognize that I have a choice. I can stay stuck in this mindset and we can have a miserable trip or try to find ways to make it more pleasant, or at least less tedious. I can “bow to the winds” by changing my attitude and perhaps instill some positive moments into what would otherwise be a long and tiresome two-day drive.

When we were first married, we often did road trips for work. One thing that worked well for us, and that I had forgotten about, was listening to books on tape. My husband reminded me of this so I downloaded one that I think we will both enjoy for this trip. It has been years since we have done this and it will be a treat, a walk down memory lane. I also know that we will need to take breaks and am looking at our route with that in mind. Are there any interesting places to stop along the way to stretch our legs and get a breath of fresh air or maybe a fun place to eat?

I realize that things like this are always going to come up and I can stand and try to fight them knowing they may break me, or I can work to find alternative options. I need to accept that my reactions and attitudes can be positive or negative and will impact how my husband feels. I may not be able to control the overall situation, but with a little thought and planning perhaps I can minimize the difficulties to make this an adventure for both of us. Road trip, here we come!

I do have fears about the future, what is going to happen when my husband’s symptoms progress, will I be able to care for him? I worry about what might happen if I get sick and need care myself? I worry about our finances- will we have enough money to provide the levels of care we might need? I turn on the nightly news and am suddenly bombarded with a whole different world of things to worry about, what is going to happen to all of us?

Then I stop, take a breath, and remember my mother. She worried about everything. Granted, she had two daughters who did their best to give her things to worry about, but that is another story. She was a child of the depression and the young bride of a WWII soldier, perhaps some of those challenges explained her constant and persistent worry. Doctors prescribed anti-anxiety medications and then anti-depressants when those didn’t work. Her fears about the future drove her daily right up until dementia took all of her worries away.

I have decided that I don’t want to live (or die) like that. Instead I am doing everything in my power to let go of worries and live fully in each and every day. I acknowledge my concerns, act on them if it is appropriate, and then let them go. I don’t waste time worrying about those things outside my control because they will or will not happen regardless. If I have the choice between acting with positive purpose or anxiously reacting and suffering the consequences, I know which path I will pick.  The journey is too short, I’m going to enjoy it as much as I can!

I have been cranky this week, I know I have, and have been trying to overcome it because it is not my husband’s fault that I feel this way. I know that these feelings have everything to do with his disease and understand that he can’t help it. Being his CarePartner is tough at times and I find myself feeling upset and lost. It seems like I am a dung beetle pushing my burden up a hill and even though we are both working very hard, his illness continues to progress and the “dung” piles up.   

My message to others is usually to stay positive and look at what you have, not what you have lost. However, I still need to know that it is essential for my mental wellbeing to take time and acknowledge all of my feelings. I need to be able to grieve for what could have been so that I can accept what is, otherwise those negative feelings ferment inside me and impact everything I do. I need to recognize the anger when my husband needs help with basic life skills like dressing and is no longer able to share with many of our household duties. I need to spot the frustration when it takes two or three times as long for him to get in and out of the car. I need to be able to understand my sorrow when I see the man I married trapped in a body that doesn’t work well anymore even though he tries so hard. And I need to know that it is okay to feel these things.

The most important thing I need to know on this journey is that none of this is our fault. Parkinson’s Disease is a diabolical enemy in that it attacks both of us in different ways and can push us apart as we struggle to surmount the challenges. I need to remember that it is okay to hate the illness, but that I will always love the man.

I regularly attend a PD focused movement and voice class with my husband. Our instructor is an amazingly upbeat young woman who tells us that the muscles we use in our face to smile send messages to our brain. If we make the effort to smile even when we don’t want to, we create messages that align with a sensation of happiness and we feel better. When she first mentioned this, I have to admit that it sounded too easy to me.

A few days later, I was having one of those days where nothing goes right and feeling really frustrated and down. I remembered her words and decided to give it try. Since I was doing random chores in the house, what did I have to lose? I took a deep breath and forced myself to smile. I consciously made the effort while I worked. Within about 20 minutes, I realized that I was smiling for no reason and my mood had indeed gotten brighter. It may sound simplistic, but if it works, I’m all for it!