Crisis responses are quick and emotional as our bodies are designed to react to a perceived threat to ourselves or someone we love. I know that it is difficult for me to learn to slow down my process and be mindful in those moments of panic. I also know that my outbursts are not helpful and hurt me and my husband.

I did it just this morning. My husband was struggling to get out of bed, stumbled and nearly fell. I yelled at him asking why he didn’t use the tools I devised for him. I regretted the outburst immediately but it was there between us all through breakfast. I finally went to him and apologized and explained that when I see him falling, it scares me. I don’t think, I just react and those reactions are not always what they should be. I really need to work on that.

When I react with anger, my husband shuts down and we are not able to troubleshoot what actually happened while the situation is fresh in our minds. If instead, I am able to remain calm and work with him to figure out where things went sideways, we might be able to find a solution to the challenge. At the very least, we won’t be mad at each other.

My husband and I are a team facing his diagnosis but his journey as a Person with Parkinson’s is always going to be different from mine as his CarePartner. We can share our struggles with each other but neither of us can really relate to what we are dealing with individually. For that complete understanding and acceptance of my role I need to have others who are in similar situations to speak with me, to laugh with me, to vent with me and yes, at times, to cry with me. 

I met a friend for lunch the other day. Our connection comes thanks to a local PD support group. We left our husbands at home this time so we could have a chance to speak freely about challenges we face. Our husband’s symptoms present in very different ways. While my husband has always struggled with the physical side of PD, her husband is also experiencing hallucinations and cognitive issues. Yet, when we are sharing our feelings about our challenges, it is like we are married to the same man.

The words coming out of her mouth could be mine. It’s the little things, and sometimes not so little, that we never thought we would be facing. We both talked of the changes to our lives and our long-term plans and the sense of loss we face every day. The most important thing that I brought home from that lunch was the reminder that no matter how difficult my day may be, there is always support and understanding within our PD network. All I have to do is reach out and grab it.

I spend way too much time rehashing things that happened yesterday wondering how I might have done them differently to have a better outcome. Or, I am thinking ahead, looking to a future that we can’t know yet and trying to prepare for those indefinite challenges we may or may not face. It is distracting, perhaps that is the point, and keeps me from tackling the realities of where we are today. 

My husband has challenges that I am ignoring. He struggles to get in and out of bed. He has balance difficulties and has fallen three times in the past year. His speech has become somewhat muffled and there are times when I cannot understand what he is trying to say. That these problems come as a side effect of the Deep Brain Stimulation that reduces his tremor and stiffness doesn’t make them any less important. I need to work with him to minimize these issues now, not worry about what I did wrong yesterday or where we might be in 10 years.

My energy and my time are limited. I can choose to live positively or I can waste my life in worry and self-doubt. My husband deserves better than that; I deserve better than that. Just as living well with Parkinson’s Disease can be my husband’s reality, I will make living well with someone who has PD my reality too.

We just started working with an occupational therapist and it has been an eye-opening experience for me. I requested the process so that we could discuss changes we might make to our home as we prepare for an uncertain future. I find that instead I am learning so much about what is happening now.

My first thought is why we haven’t we had this service before? My husband was diagnosed more than 10 years ago, he has worked with multiple neurologists and a movement disorder specialist and not once in all that time was he referred to an OT. When I brought it up at his last appointment, his neurologist seemed to scoff at the suggestion and even questioned how she should word the request- “thinking about remodeling and need a consult?”. I was somewhat surprised when we received a call from the OT herself to schedule an appointment.

There are a lot of people who can help us in our journey, unfortunately we often have to find them on our own. I have learned that I can’t rely solely on our neurologist or Primary Care Physicians to know who or what we might need. I need to listen to others in our support network and then advocate for the most comprehensive care for my husband. Consulting with specialists including Physical, Speech and Occupational Therapists helps me make sure that I am doing all I can to support him while at the same time encourages a safe and full life for both of us.

I have a friend in our CarePartner network who needs to have surgery. It will put her off her feet for about a month. Normally, her husband would pick up the slack and provide care for her but he has Parkinson’s Disease. So, what are they to do?

It’s not an unusual situation. Most of the CarePartners I know are older and we have our own challenges. Yet as the primary support providing full time care for my husband, I can’t call in sick to take care of my own needs because someone must be here for him. There has to be a Plan B, but most of my friends are in the same place I am, how can I ask them for help when they barely have time for themselves? I could speak with our family but they are so busy with their own lives we hardly ever see them.

So, my plan is to wait and see what happens. Not a smart one, not a good one, not one I would advocate for anyone else, but admittedly the only one I have. Friends, family, neighbors all know that my husband has PD even if they may not be aware of the daily struggles. When a situation arises, I will make calls and take whatever help I can find. I know people who have been through challenging times before, I will lean on them for advice. And, we will make it through. Then, once we are on the other side, perhaps I will be able to look back and say “so that’s my Plan B”. Hopefully it works.

Parkinson’s Disease is a long haul. It has been defined as a marathon, not a sprint, because the progression is so slow and debilitating. When my husband encounters a challenge, I am tempted to look for a quick fix. Unfortunately, those fixes often don’t last. A better approach would be to look for a solution that works for him now and should still work later when his symptoms progress to a new level.

My husband’s tremors had progressed to the point that he couldn’t manage a knife while dining. I started preparing food differently, making sure that any vegetables or meats were cut into bite size pieces. Looking back, it would have been a better solution to purchase utensils that supported his independence and allowed him to cut his own food. The tools are out there, we just needed to make use of them. DBS surgery has eliminated most of the tremor and he is able to cut his own foods again, but we didn’t know that was a possibility at the time.

Looking at things differently often means bringing in a fresh set of eyes. We have an occupational therapist coming to our home next week to do a walk through with us. I am sure she will have suggestions on changes to our environment that will make aging in place easier for both of us. While I am looking forward to her input, it comes with a bit of trepidation. I know we need to be open to hearing what she has to say and then my husband and I can decide which changes to implement as we move forward together.

Life with someone who has Parkinson’s Disease can be confusing, it can be frustrating and it can be overwhelming. It is no wonder that I feel like I am failing at times. I am unsure about what I am supposed to do or how to get it done. I am up against an adversary (PD) who holds all the cards in a game I cannot possibly win as I struggle to help my husband live a full and productive life.

It is easy to beat myself up and accept blame for what is going wrong. My husband isn’t exercising, I need to encourage him more. My husband isn’t eating right, I need to provide the correct diet. He isn’t socializing, I need to make more opportunities for him to be with other people. I like to think that it’s all my responsibility and my fault when things go haywire. I forget that I did not give him PD and that I cannot take it away no matter what I do.

Our reality is that I do my very best and still things outside my control will shape the outcome of our days. He may be too fatigued to exercise or maybe he doesn’t like the healthy foods I put in front of him. Instead of being critical of my work, I need to be compassionate with myself as I remember all that I am doing to support him in his journey. I need to understand and accept that as long as I face each challenge with a loving heart, it will always be enough.

We recently had some friends over for a backyard happy hour. I spent a lot of time cleaning up our yard with my husband helping as much as he could. The day before the event, I woke to find 2 large mole hills in the front yard and 3 in the back. It was disheartening and a battle I just didn’t have the time or energy to fight. So, instead I went out and stomped the heck out of all the holes and let it go.

On the other hand, our heat pump recently died. It was 19 years old so we shouldn’t have been surprised when it couldn’t keep up with summer extremes. Neither of us are able to deal with the heat like we did when we were younger. I made calls and we are scheduled for a new unit next month with a local company who loaned us a temporary unit to get by for now.

Recognizing home challenges that need to be tackled is fairly easy, it is more difficult recognizing which challenges I need to take on with my husband and which I need to let go. Do I speak up about his swallowing issues when I hear him choking or remind him to stand “tall as a tree” when I see him slouching? I struggle constantly to find the line between supportive CarePartner and nagging wife. I am learning to look beyond the momentary challenges to the bigger battles he is fighting. There are times when it takes too much energy for him to stand tall or think about how he swallows. Those are the times when I just need to love him and let everything else go.

I have studied Psychology, I have worked with families in crisis, I helped my mother when my father was diagnosed with PD and then later, I was there for her when she developed dementia. Still, when my husband called me and told me that the neurologist said he had Parkinson’s Disease, I felt like someone had punched me in the gut. I was lost, confused and so sorry I hadn’t gone to the appointment with him.

Knowing things and being able to share them with others is one thing, living them is a totally different experience. All those wise words that I had put out there started to come back to me, but how could I apply them to our situation? My husband, my best friend, had just gotten this life changing diagnosis, how would we get through? I was overwhelmed and unprepared for this new reality.

So, I went back to the basics. I acknowledged that I didn’t know what was coming and made a commitment to walk alongside my husband wherever the road might take us. I started researching options for what life might be for us moving forward. I started living life day to day and learned to appreciate what we had regardless of the disease. And, I never missed another of his appointments.

However, I learned a long time ago that crafting my questions carefully was an important skill I needed to develop. I try not to ask yes/no questions unless they are really appropriate. Things like “Did you take your meds?” or “did you shut off the water” need definitive responses. Whenever possible I try to use open ended questions that require more than a one-word answer. An example might be “Which of your meds did you take now?” requiring him to think and respond. It might still be only the name of the medication but it has required more brain effort.

Another thing that I have learned is only to ask questions that I really want him to answer. If I have a project I am working on and I know how I want it to go, I don’t want to ask for his advice because he will want to do it another way. If I only have chicken defrosted for dinner, I might ask “how would you like the chicken cooked tonight?” but I would not ask what do you want for dinner because he would ask for beef.

I do ask my husband how he is feeling every day. It helps me know what to expect from him and helps me plan my day. Just this past week I had a very busy day scheduled and I needed to know that he was going to be okay. Unfortunately, when I asked him how he was doing he replied that it was a “low energy” day. I tabled some of my projects and we took the day a bit slower so that he could rest and recharge. Asking appropriate questions sends me in the right direction as I work to provide the care he needs.