My husband’s cognitive abilities are tested at least once a year during medical appointments. The tests ask him if he knows what day it is, the date and year, who the president is, to remember a series of words and he always passes because he knows what to expect. However, I am thinking that it might be a good idea for us to talk about these things more because since we both retired the actual day of the week and date have become somewhat irrelevant. We check our calendar every morning for appointments and, if there are none, we move on to enjoy another day just like all the others.

This is not just for him, but also for me. My cognitive abilities need to be exercised so that I can protect my brain as I am getting older too. I am at all his appointments with him and often catch myself participating quietly in the testing. I don’t always do so great, especially when they ask him to count back from 100 in 7s. It will not be good if I develop cognitive challenges, who will care for us then?

We already have times when we talk about current events in the world, I think that it is time for us to add some talk about the basics, the day of the week and the date of the month. It never hurts to add to the dialogue and will serve to work our brains as we recall the facts and strengthen the internal mechanisms that allow us to verbalize them. We both need a strong foundation so we can have a healthy future together.

My husband and I were older when we met and married. We both had histories of failed relationships and carefully considered what we each wanted prior to making a commitment. We discussed our views of what a good relationship could be as talked about individual needs and wants. We envisioned the three different components of a good relationship, emotional, intellectual and physical, as a three-legged stool. Each component needs to be nurtured equally or the relationship topples. We continued our conversations on a regular basis after our marriage to ensure that we stayed on track and our stool was balanced, but we all know what Parkinson’s Disease does to balance, right?

My husband’s illness first came to our attention when he developed a tremor in his left hand. We have always liked to cuddle in bed, but it became impossible for me to lay next to him without getting hit. The physical leg of our stool was definitely taking a hit as well. Medication helped some, but we never really got rid of the tremors until he finally decided to get DBS surgery. Suddenly we were able to cuddle (and more) again.

The emotional and intellectual legs of our stool have not been as deeply impacted; however communication is difficult at times as his voice is quieter and his thought process is slower. Taking the time necessary and making a concerted effort to connect has been key in helping us support those legs of our stool. We dedicate a few minutes every afternoon for each other, we call it our afternoon aperitif, but it’s really more of a check-in.

Parkinson’s Disease is presenting us with more challenges than we expected yet we are still here and we are still together. It was good that we defined the three components of our relationship before his PD diagnosis so we would know what we are fighting for now. The rest is all just happening and we can adapt and accept. Our stool may tilt from time to time but it hasn’t completely toppled and I sincerely believe that we can keep it upright as long as we both keep trying.

Retail therapy works! I am not a shopaholic, as a matter of fact a lot of the clothes in my closet are older than my grandson who graduates from high school this spring. However, a recent conversation at a CarePartner’s meeting was about how long it had been since any of us had gone shopping for ourselves. I had to admit that I couldn’t remember the last time I went to a clothing store simply for the fun of it. It was not a high need and never quite fit into my current life.

The conversation bounced around in my head for weeks before I finally decided to act on it. I had to admit that it was beyond time for me to do something just for me. It then became a process of trying to figure out a timeframe to minimize disruption to our schedule. Wednesday mornings are good for us because my husband participates in a seated Zoom class for an hour before lunch. It is a safe experience for him and one that he can do without help. I normally use that time for chores around the house, but realized this could be my only window of opportunity so I took advantage of it. We live close to a mall and that hour was just what I needed. Following a successful shopping adventure, I picked up lunch on the way home making it a treat for both of us.

It didn’t matter whether I found any new clothes or not that day, what mattered was going out alone to do something just for me. Around the house I am always on alert. I put my husband’s needs first because that is how I define my role as CarePartner. Being able to walk away, even for an hour, was challenging because it was outside of my comfort zone. Even more difficult was having an agenda that was all about me, yet it was wonderful. I have decided to work this into my schedule at least once a month. It won’t always be clothes shopping but it will always be just about me, which is really what I need the most.

There are some things that we simply cannot do anymore thanks to Parkinson’s Disease. Our dancing days are probably over and no more afternoon hikes. I miss those activities, and I know my husband does too, so I am looking for ways to bring them back. I am not sure it is going to work for everything, but perhaps with some minor modifications?

We used to enjoy visiting local wineries for dinner, music and dancing. Thanks to his diagnosis, my husband is no longer the dancer he used to be nor does he like to drink wine. He likes the music but cannot compete to maintain a conversation. Our solution is to try for quieter events or venues and to sit in the back away from the main flow. We make sure they offer soft drinks as well as alcoholic beverages and then, when the dancing starts, I dance next to him at our table or maybe we can share a slow one together.

We are struggling to find a compromise for the hiking. I have taken walks around the neighborhood on my own but I always feel guilty knowing that he would like to be out there too. We have walking sticks that we both use and my husband can go about a quarter of a mile before he wears out. I have suggested that we go somewhere that he can sit and read while I walk, perhaps along the shore of the river, we are still in the discussion stages.

His diagnosis of PD can restrict our lives as it presents with new challenges or it can open us up to new opportunities. The key is to communicate about what I want to do and what might be possible. I have always liked an open-door policy and look forward to finding out just where it will take us.

For years I have been talking about hiring someone to come and take care of my lawn for me. I even went so far as to gather information from friends regarding who did their work for them including phone numbers. I always thought that it would happen soon yet kept putting it off because mowing the lawn gave me an excuse to be outdoors and it is such great exercise (haha).

I am not sure what the final trigger was, but yesterday I called one of the names I had been given and made arrangements for him to start this week. Once I made the call it became a simple process of showing him the lawn and discussing timeframes. We are all set so why am I still feeling hesitant about the decision?

My husband thinks my hesitancy comes from doing everything for myself all my life. I have never been good at accepting help so perhaps he is right. I wonder if it isn’t more that I have been keeping all the balls in the air for so long and don’t know how to let go of one for fear of dropping them all. I was raised to take care of myself and, somehow, this just feels wrong.

I am working to shift my perspective. This is a physically wearing task that I won’t have to do and, by hiring it out, I am able to support a local family business. I will accept this as an opportunity for personal growth as I learn to ask for and accept help. It gives me the chance to acknowledge that I don’t have to do it all because trying only wears me out. This is a ball I can happily hand off to someone else and my lawns will look better for it too.

My safe place is my writing desk, and my thought process is two-fold utilizing a journal and this blog. I put the deeper and more troubling aspects of my life in my journal because I know that no one will ever see it. I can write whatever I want there, analyze the thoughts and then let them go. Sometimes I find solutions to problems, other times simply absolution for my feelings. Again, it is my place to put those things I can never say, and it keeps me from letting them slip out anyway.

My blogs are where I try to deal with daily life. I consider things I might be learning about my role as CarePartner and Parkinson’s Disease. I often find that journaling about a problem leads to a blog about whatever was bothering me in the first place. The journal becomes my blackboard, the blog my finished report.

Writing in my journal, writing this blog, gives me a release, a space where I can voice my concerns and then look at them with a clearer mind and perspective. I realize that not everyone processes thoughts in the same way I do and would encourage you to find whatever it is that works in your world. Perhaps it is painting or gardening, maybe a long walk allows you the freedom to escape for a few minutes and work through the many challenges we all share. The point is that we all need that time and that space, whatever it looks like, to take care of ourselves and figure out these crazy lives we are living.

As a CarePartner, I often overlook my own aches and pains because they see minor compared to what my husband is facing. Sure, I have arthritis, who doesn’t? And the occasional headache has to be stress related, doesn’t it? Besides, I can’t be sick because someone has to take care of us and, since it can’t be him, it has to be me.

Do unrecognized (or perhaps unacknowledged) ailments indicate undiagnosed illnesses? According to an article in Parkinson’s News Today entitled Parkinson’s Caregiver Needs Prime Area for More Study, Scientists Say, more research needs to be done to look at the impacts my husband’s diagnosis is having on my life and my health. The author states, “In some cases, caregivers become an ‘invisible patient’ due to limited time and resources to seek their own healthcare.” How often do I, as a CarePartner, wonder what would happen if I did get sick so I avoid or deny my personal issues?

I am happy that the scientific world is starting to look into this topic. I have always felt that my husband is primary in this diagnosis and I am just along for the ride, yet as his symptoms progress it becomes obvious that I will end up in the driver’s seat. If I am to take the lead, I need to make sure that I stay healthy and have the support I need to survive. That means that I must be aware of what is happening in my body and recognize when things are not going well. Good self-care must start with my being self-aware, recognizing my own ailments and seeking appropriate treatment. I have always thought that PD was a shared diagnosis and now I have scientific proof.

We have always enjoyed travelling to experience new places and people. Unfortunately, that is one of the things that Parkinson’s seems to be taking away from us. It has become increasingly difficult for my husband as he tires so easily. Travelling, no matter the mode, often means he has to focus energy on navigating noise and crowds in unfamiliar territory. Daily schedules, so important for someone with PD, are disrupted and dietary changes bring their own challenge. Regardless, we are planning a trip to Hawaii in September to celebrate our 20^th anniversary, albeit a year late, and my hopes are high we will have a good time.

In order to make sure things go smoothly, I am trying to handle as many of the basic logistics in advance so all he has to worry about are his physical challenges. I’ve asked for a wheelchair escort from the ticket counter to the gate at both airports. I requested an ADA approved room when making my reservation. We are going back to a resort we visited before so we know the area and what to expect while we are there. We’re getting an ocean view room so when he is tired, we can rest on the balcony and watch the whales playing in the waters off the island. We only plan to stay a few nights which minimizes the overall impacts of being away.

Now comes my biggest challenge, helping him acknowledge that this can go easier if he is willing to accept assistance along the way. He hasn’t been open to a walker or wheelchair before, will he understand that the need isn’t just for him but also for me? I can handle shuttles, ticket counters, luggage, carry-ons, whatever other hassles travel presents, but not if I am also having to keep an eye on my husband to make sure he is okay. I want to enjoy my time in Hawaii rather than arrive exhausted and spend the entire vacation trying to recover only to go through it all again on the way home. I guess I’ll find out in September.

Spring is a challenging time for me because, as I come out of my winter hibernation stage I want to get out and get busy. There seems to be so much to get done and I want to tackle it all at once. The longer daylight hours give me more time to work, and I feel the need to fill them all. I sometimes forget that my life is already busy with CarePartnering duties and I tend to get carried away by the new, often more interesting tasks in front of me. Trying to do it all simply leaves me frustrated, irritable and exhausted.

Thankfully this spring the goddess of weather has looked down and put rain in my way. I have been limited in the amount of time I can spend outside because it is too wet or too muddy or just too cold. I have been forced to slow down and think about what I want to do, then break it into smaller portions that can be completed in windows of dry time. So far it seems to be working pretty well. In addition, a friend offered to come and help with the yard and we had a couple of good days to work together. That was just enough to give me a kickstart. She had some great tips and tools that made the job go faster and easier.

I have limited capacity and time constraints that change based on whether my husband is having a good or bad day. If I am going to be here for him and for me, I need to recognize and respect those limits. The word “no” can be harsh, so instead I am going to say “enough”. If I come at each new day with clear priorities and an open mind, I can accomplish much without missing the important things or overwhelming myself. I will reach the end of my day with a feeling of satisfaction for tasks completed, not complete exhaustion and thoughts of tasks still to be done.

I had lunch with a friend recently, someone outside of our PD community. She asked about my husband and then shared some about their struggles with her husband’s diagnosis of leukemia. They are also dealing with a chronic illness that is currently in remission but that could have a much more dire outcome. Listening to her situation reinforces to me that I am not the only one facing a difficult and uncertain future.

We moved on to talk about the other things in our lives, those things that exist outside the confines of our husband’s diagnoses. We started with our children and grandchildren, sharing pictures of them and swapping stories of fun things we have done together. We talked about mutual friends and travel plans we each have. Their plans are a bit more adventuresome than ours, yet we are all heading somewhere in the near future. We ended our time together with the hope that we would all come together again soon, no definite plan but a definite intention.

 Having friends who understand Parkinson’s disease is such a valuable thing for me that I sometimes forget the value of having friends who are outside that circle. We met this couple at a local winery almost a decade ago when my husband’s disease was new and not nearly as invasive. When she and I get together, I can let my role as CarePartner go for a while. Lunching with her reminds me that everyone has struggles and that there are bigger things in life than PD. I come away with a fresh perspective and ready to look, and live, for the good things that are happening in my life each and every day.