When I get together with my fellow CarePartners, we often talk about how difficult it is to be positive when you are physically and emotionally spent. Yet I still find myself tackling chores even when I know that I am tired and need to rest. There is always a reason to ‘take care of just one more thing” even when my body is telling me it is done. This is especially true when I have been busy all day with outside tasks only to find that I have neglected something essential like making dinner.

Beyond understanding my limits, another challenge seems to be pacing my day. Earlier this week, we had completed all our normal tasks only to realize at dinnertime that I had forgotten to cut the lawns. Knowing it is normally only a 45-minute job, I chose to take care of it when I finished in the kitchen. By the time the lawns were cut and then watered, I was tired, achy and cranky, and the rest of the evening was not pleasant. When we went to bed, I was overtired and had a very difficult night which impacted my abilities the next day.

My husband likes to remind me that I am not superwoman and don’t need to do it all. I have decided that I am going to start tracking home chores on our calendar so that I can make sure not to overschedule. I am going to learn to listen to my body because the signals are there, I just need to pay attention to them when they tell me to stop. An exhausted CarePartner is worse than no CarePartner at all. I will do what I can to respect my personal limits so that I can provide a positive life for myself and the one I love.  

What would a day without PD look like? For us, it might be breakfast out followed by a daytrip into the country. When we got hungry, we would stop at a restaurant for lunch. There would be a hike and, since my husband enjoys photography, a stop for scenic photos. Our afternoon might include a stop at a local winery before returning home exhausted yet refreshed by the experiences of the day.

So, what gets in the way of doing this now? How can we modify the plan so we can make it happen? Well, since my husband’s diagnosis, he tires easier than before. We currently allow time in our day for an after-lunch nap. We also have a pretty strict schedule of meals so as to not interfere with the efficacy of his meds. His hand tremor impacts his ability to hold a camera and hikes are limited to one mile at a time.

Taking all of these things into consideration, I think that I am ready to give it a try, however we many need to look at a half-day trip rather than a full day. We will start with breakfast at our favorite restaurant followed by a drive out of town. Next a short hike using our phones to take pictures before stopping for lunch on our way back home.  We will spend the morning exploring as we enjoy each other’s company while meeting the needs of our new reality.

When we were first on this journey, my husband needed little help from me but as we reach the ten-year mark, that has changed. I am his transportation, I often help with dressing, and have taken over many of his day to day chores around the house. How and when did this all happen? If only I had kept a diary and jotted these changes when they first occurred, I would be able to answer those questions.

Having a tool that allows me to track the progression of his symptoms would be so useful. I could actually speak with his neurologist about changes that have taken place since we last met. We would have a basis to talk about his activities of daily living and the help he needs currently. If I could look at my calendar or diary and see where we actually were six months ago and review notes about changes that had taken place, I could share much more about what I actually see happening.

We recently decided to update our estate plans and the attorney mentioned that there may be assistance available for my husband as his disease progresses but we will need to meet certain criteria. In order to know whether we qualify for additional help, we need documentation of when the help was first needed and how it impacts our lives. We can look back and make educated guesses, but it would be much better if someone had told us this earlier so I could have been tracking the changes all along.

Finally, as this disease progresses, we will see changes in capacity for both of us. It would be nice to be able to identify when and where the changes are taking place so we can better understand that it is the illness that is causing them. If we note the changes and discuss them, we can face them together and I will not feel like I am alone in facing the challenges. If we track where we are honestly, then we can monitor the advancement of symptoms and be ready to ask for help when we truly need it.

When our fence fell down in the spring snowstorm, when our elderly cat fell ill, when a global pandemic struck, when racial tensions overtook our society, there have been many things to worry about recently that have nothing to do with my husband’s diagnosis. And it serves to remind me that life goes on regardless and we need to make the best of it all.

I know that it may seem unfeeling, but having other issues to think about can sometimes give me a reprieve from the daily challenges of being a CarePartner. Looking at what is happening in the world reminds me that we are part of a larger picture and that our personal challenges are small compared to what our society may face. The national and global news can be sobering, yet at the same time, I am reminded that my husband and I have each other. We are strong and together we can face whatever life might throw at us. That includes PD.

These things do not come easily for me, yet I know that they are essential skills for me to learn as we progress along our journey. There are times when I need help caring for my home and my husband and I need to figure out how to ask rather than struggle through.

Recognizing that I need help requires taking a moment and asking myself whether I am the best person to do a task. Do I have the right skills to do it safely? Is there someone else in our circle who would be better able to do this? What am I going to have to give up to find the time to do this? Answering these questions honestly can help me accept that I am not the right person and lead me to the next step, asking for help.

Once I have decided that I am not the best choice for completing a task, it is time to reach out to others. We have grown children who are willing and able, but I feel like I am imposing when I ask them for help. I am learning to set aside those concerns and ask anyway; they haven’t said no yet. I do have to be ready to let them take over control of the task and accept their timeframes, not always an easy thing, but well worth it to get their support.

Last year, when our mailbox fell over, I called my son and we had a great experience replacing it. I worked alongside him and we bonded in ways we haven’t for quite a while. By accepting his help and guidance, I was able to move our relationship to a different level. It also helped him understand what I am going through as a CarePartner and opened the door for more opportunities in the future.

The world is crazy and sometimes it feels good to take a break and “do nothing” in an attempt to escape it all. There is nothing wrong with taking those breaks as long as I remember that life still goes on. I am not in this world alone, I am caring for another. It is essential that I take an active role and choose to be present for myself and for my husband. Hiding from my challenges never works, they are still there and even more difficult to tackle when I finally decide to get back to reality.

I have found that the easiest pathway to depression for me is sitting and stewing on all that is wrong with our lives. Instead, I can make the choice to get up and try to make life fun whenever possible. Being active, even if it is simply taking a daily walk, can lead us to so many adventures. Movement, and more specifically exercise, is the only thing that can slow the progression of his PD and is healthy for me too. I like the thought that we can motivate each other and the knowledge that it is (hopefully) giving us more years of fun ahead as we continue this daily adventure with PD.

We had only been married 5 or 6 years when my husband’s hands started to tremor. We learned that it was Parkinson’s Disease just after our 9^th anniversary and for the 10 years since it often seems like we have a third party in our marriage. Our relationship has had to adapt to accommodate his diagnosis because the tremors and slowness are always there. I also know that the man I fell in love with is always there even though sometimes he is hard to see.

This diagnosis has also changed our outside relationships. My husband was active in the community with volunteering and work that he loved. Those activities have gone by the wayside. Now when we go out, I take the lead in most conversations and he is happy to sit quietly as an observer. Friends we used to spend time with understand, yet still they appear to be not quite sure how to connect with us. I have become the face of “us” in the community, handling most of our interactions as best I can.

As my husband’s symptoms progress, we are developing new relationships within the PD community. We connect with others who share the diagnosis and can relate to what we are going through. It is wonderful having a group of friends where we feel respected and valued, people who can see beyond the diagnosis and understand what is hiding within. They know and understand the challenges as we all move forward in our individual battles with PD.

Modifications, just the word is scary. Will we have to remodel or even move to a different home? What about mobility, will my husband need a walker or even a wheelchair someday? Can we continue sleeping in the same bed or do we need to look at a different arrangement? What about bathing, is our shower safe for him? What is going to come as his symptoms progress and how can we plan for it?

Simplifying your home and your life now can help eliminate many daily struggles and open the door to additional modifications that might come later. If you have access to an occupational therapist through your husband’s medical team, take advantage of them and ask your questions.  I know that I often look for the worst to happen when in reality solutions are much simpler and available. There is also a great tool called the Parkinson’s Home Safety Checklist, put together by the Davis Phinney Foundation and available on their website at  https://www.davisphinneyfoundation.org/landing-home-safety/.

Remember, when you are thinking about modifications, the conversation needs to be with your partner and it needs to be realistic. Make sure that whatever you plan will work for both of you and that you look at all alternatives. Don’t be afraid to try different things before committing to the final solution, you may find a workaround that is just as effective for your situation. And, finally, remember that any modifications are meant to make the journey easier for both of you. Your ability to adapt to the new system is as important as theirs, make sure it works for you too.

Saying no to my husband is difficult and often leaves me feeling that I have done something wrong. A great example is that we were recently looking at a job that needed to be done in the backyard. It was something he used to do and so it was normal that he would expect me to be able to do it too. It was not something I felt I could do yet I had to say “no” several times before he realized that I meant it. I came away feeling like I had let him down and the project is still there. When we can talk about it again, we will come up with a modification or call someone for help.

The “no” extends beyond our home. I am learning more and more that we need to protect what we have. I need to be able to say “no” to requests that are outside of my capacities, especially any that would interfere with my ability to be here for my husband. I carefully examine opportunities as they come up before deciding if it is something I can add to my already full list. Prioritizing, evaluating, and then deciding when to say “no”, it’s all an integral skill I have had to learn as we continue on our journey.

There is a lot of negative energy in the world around us right now and most of it is out of our control. I struggle daily with ways to keep it out of our home as we already have enough challenges thanks to PD. We have discovered a couple of things that make life better and keep us moving in positive directions regardless of outside influences.

One thing that is helping us in these difficult times is to revisit old traditions that brought us peace. When we were first together as a couple, we started our Sunday mornings listening to acoustic music on the radio while we read the paper. We enjoyed the calming sounds and shared laughs over the funny pages. As the years passed, we had lost some of that fun. We are now consciously revisiting that tradition.

We are also actively working to create new opportunities to enjoy each other’s company. We have instituted a new tradition of the afternoon aperitif. We take a short break mid-afternoon for a beverage and a light snack, outside if possible. This moment we take to reconnect with each other is becoming one of my favorite times of the day.

Finally, we are communicating carefully with the outside world in an attempt to limit the impacts. We stay informed on current events without becoming immersed, which can be challenging at times, but helps us stay sane. Our journey continues and we need to keep our positive focus on us as we move forward to whatever tomorrow will bring.