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!

There was a question at a recent support group meeting, “now that we know my partner has Parkinson’s, do we need to sell our two-story house?” We went around the circle sharing thoughts and came to the conclusion that we can’t answer that question. Some of us have been able to modify our current homes so they would meet the needs of our partners, others have had to make bigger changes that even include assisted living arrangements. These decisions will depend on how the disease presents itself in each individual and how their symptoms progress. There may also be other factors that normal aging brings into the game for either of you. The key is to be open to the fact that there will have to be some changes and then figure out how to make those happen.

My husband and I were lucky in that we already lived in a single-story home when he was diagnosed. As his physical challenges progress, we think about making life easier for both of us, starting with the layout of the house. It’s pretty basic, we don’t put big pieces of furniture in the way. New purchases are tested out in the store before we bring them home, which can be interesting as we roll around on mattresses and practice getting in and out of chairs. The things we use more often are kept in easily accessible locations, our top shelves are getting emptier and emptier. We shower rather try to climb in and out of a bathtub.

I think the most important thing we do is to talk honestly about what is working and what isn’t. If we do need to make changes, we discuss them before they happen, surprises around the house really aren’t a great idea anymore. Planning smart takes only a few moments but can be lifesaving for us both as we age.

For more on creating a safe home environment, click here to download the Davis Phinney Foundation’s Home Safety Checklist.

It had never occurred to me that joining our local Parkinson’s support groups would give me as much benefit, if not more, than my husband. Being around people who have PD and those who love and care for them has given me a totally new perspective on our journey. The Parkinson’s community is so much bigger than we thought when my husband was first diagnosed and, while everyone has a different story, I find so many similarities with my fellow CarePartners.

Through the PD support group I found other people who knew what I was talking about when I spoke about earthquakes in bed in the middle of the night thanks to his tremors. They got it when I talked about good versus bad days and the frustrations of medications and meal schedules that didn’t always work. They too worried about the potential for cognitive changes and wondered how to deal with what was coming. This was a safe place where I could share my stories and be understood by others who were also seeing changes in their loved ones. As we compared notes, I realized I had found a home.

I have since branched out to help form a breakfast group and coordinate local education opportunities for CarePartners. Socializing together promotes a stronger of community as we open up about the challenges we face each day and find ways to share a laugh. Life is too short (with or without PD) and no one should ever face it alone. Support is available for all of us, reach out and find it today.

I have heard it said that “Laughter is the best medicine” and I guess it is true, but there are times when I just don’t feel like it. However, those are the times when I especially need to find a chuckle because nothing lightens my CarePartner’s load more than laughing at the absurdity of it all.

Parkinson’s Disease is like a dark cloud that is always on our horizon and we never know for sure when the storm will hit. Instead of waiting for a downpour, I am learning to create my own sunbreaks. This may sound too simplistic, but when things are at their most stressful, if I look to my husband and we share a laugh, it will all go a little better. And, isn’t a little bit better all we can hope for sometimes?

There are many reasons to find excuses to laugh everyday. A good laugh soothes nerves and releases tension while massaging and stimulating your internal organs. A belly laugh works your core muscles and strengthens your diaphragm. It doesn’t really matter if it is genuine or forced, the benefits are still there.

So, the next time you are feeling frustrated, stressed or ready to give up, picture my friend here and throw your hands into the air with a hearty “hee haw”.  Trust me, it will change your mood and get you started on a better day.

For more information on the healthy benefits of laughter check out this page on the Mayo Clinic website- “Stress Relief from Laughter”.

My moment comes every morning while drinking my second cup of coffee. This is the time when I check in with the world, look at emails and my other social media accounts, but the most important thing that I do is to check in with myself through journaling. It is amazing how just taking a few minutes to jot down often random thoughts can clear my mind and let me prepare for the day. I imagine my brain as a pressure cooker and journaling is the release valve that allows me to vent the excess steam before moving forward into whatever today might bring.

We have set up boundaries around this time that work well for both of us. We placed a desk in a spare bedroom so that I am close should he need me, yet he knows that when I am in my space I want to be left alone unless it is really important.  I write in the mornings which allows him the time to get through his daily tasks without me there watching, pressuring him to hurry up, or trying to help. He can still do most of these things alone and I need to stay out of his way and let him.

You will never, or seldom, find the same thoughts written here that are in my journal. My husband reads my blog, he doesn’t have access to my other writings. Just as he needs his time and space, so do I, and the journal is a safe place where I can say whatever I need and know that it will never go anywhere else. Venting hurtful thoughts and words before they explode out of my mouth helps me maintain and move forward to have a more positive day.

It isn’t often that I can say anything positive regarding my husband’s diagnosis of Parkinson’s Disease, yet it did finally force me to start writing. The words were always there, the release wasn’t. Chronicling the challenges I face on my journey as his partner, and sharing them with my husband has helped us communicate better and makes us a stronger team as we continue his battle with PD.

Journaling is my “coping skill”, for more information about coping with the challenges we all face as partners, check out this article Coping Skills for Care Partners on the Parkinson’s Foundation website.

Being gentle with yourself is key to being gentle with the ones you love and the world around you. I know that it is not right for me to use unkind words or become frustrated with my husband. And yet, if I make a mistake, I immediately jump into negative thoughts about myself without even realizing it. I may do something “that is so stupid” or “thoughtless” and wonder why “I can’t get it right!”. As a matter of fact, my self-talk often includes comments I would never say to another person, so why is it okay to say them to me?

I need to learn to look at myself with kindness and understanding and know that I will bring my best self to everything I do. Life as a CarePartner can be difficult and I am only human. No matter how hard I try, there will always be things that don’t work quite the way I hope they will and it is okay. Failure is a vital component of success and I need to allow myself to experience it without recrimination and keep on trying.

Isn’t it interesting that in this time of electronic medical files, the professionals working with my husband still don’t seem to be able to share information in a timely and useful manner?

We started keeping a notebook that houses all of his medical information and appointments. All of his doctor’s business cards are in the front followed by a listing of his current diagnosis, medications and schedule. Then there are different sections for his various medical concerns. For example, he has one section for his appointments with his neurologist and another for his visits with his primary care physician. There is a section for the surgeon who operated on his shoulder and another for the physical therapist he sees. I know that all of this information is accessible on-line but not all of the doctors share files. By keeping all of the after-visit summaries in one place, we make sure the information is always available. All we have to do is grab the binder and head to the appointment.

We include copies of legal documents such as his POLST form, his Medical Advance Directive, and the Power of Attorney that allows me to make medical decisions for him. It is challenging enough to know I might have to make difficult decisions without having to try to find the correct document in the moment. Again, it is all in the binder ready for any emergency.