This is so much easier said than done for me. My husband exercises 6 days a week, that’s an hour of scheduled activity for both of us in the middle of every day. He always needs a nap either before or after, another hour and a half gone. By the time we are done with this, our day is pretty much full. We may have an hour or two free but taking an entire day? Not a chance. We have one day when he doesn’t exercise, yet we still never seem to find time to do fun things. Just because we aren’t exercising, we still have regularly scheduled meals and a nap. PD delegates how we spend our time and there isn’t much room for slack.

If we can’t take a day off together, then do I try to take one off by myself? What would that look like? When I was working, I called them stress relief days, not necessarily an option for a CarePartner. I have friends who have chosen to use respite care for a break. That involves longer term, full-time stays apart and I don’t feel that I need that, I just need a day. One day when I could come and go as I pleased. No meals to prepare, no exercise class, no animals to care for, no house or yardwork. A free day without any responsibilities. I’m not sure that I would do much different, but it would be so nice to have the choice.

How can I make this happen? First of all, I need to ask for it. I need to let my husband know that I need some time for myself and then work with him to figure out a plan. Second of all, I need to accept that I can let go, I don’t have to do it all. My husband is still capable of caring for himself as evidenced by the fact that I am gone for a few hours to volunteer every week. If we can make that work, we should be able to shift it to a day when I am free to do personal tasks or even nothing at all. The third step is to find a day when he is feeling good and simply give it a try. A day of uninterrupted nothing, if that is what I choose. Living in the uncertain world of Parkinson’s Disease, I wonder if this is actually possible?

Parkinson’s Disease is an unrelenting enemy and will present in unexpected ways. It does no good to for me to try to outsmart it and anticipate the next move it will make, only my husband’s body knows and understands how challenging it can be. Everything seems to be coming at him from a place without rules where only the disease gets to make the decisions. It is unfair to him and to me as I ty to provide whatever support I can never knowing exactly what it is he needs.

Which brings me back to the beginning, what can I do to help? The first thing I can do is arm myself with knowledge. The more I know about what might happen, the better prepared I can be for what does. I stay connected with on-line resources like the Parkinson’s Foundation, Davis Phinney Foundation and Michael J Fox Foundations, to name a few. I attend seminars, webinars and support groups to learn as much as possible about Parkinson’s Disease and Parkinsonism, the broader label.

The other thing I can do is acknowledge that this is happening to us and love him anyway. He did not ask for this diagnosis or the challenges that accompany it. I need to be here and help him accept what is happening. I need to help him in his fight, whatever that looks like, and I need to respect and love him. He is losing control of his body, his life and, in some cases, his mind. I need to make sure that he knows he hasn’t lost me as well.

Life is a constant battle with patience for me. A great example is this morning when I sat down to start writing this blog and my computer decided to upgrade. It took 20 minutes to complete while I waited. Is life trying to teach me patience or is the universe trying to tell me to slow down and lighten up? Whichever it is, they now have Parkinson’s Disease solidly in their court.

Bradykinesia, bradyphrenia, bradycardia, all conditions that slow my husband down and give him the right to challenge my patience thanks to his diagnosis of PD. The term brady comes from the Greek and means slow so whenever it is combined with another medical term it slows some part of his body down. Kinesia refers to movement and the overall body slowness, phrenia signifies the brain and the slower thought processing that takes place and cardia, which I find scariest of all, is when his heart beats slower taking his energy levels with it. I understand that this is out of his control so I have to control my reaction, not something that comes easy for me.

There are times when I am thankful for the slower pace. I have always been the one who comes in just at the right time, my husband was the one there 15 minutes early. His new challenges serve as a compromise between the two. He is still able to get himself ready to leave and now we find ourselves headed for the door at the same time. I have always been a fast eater which is not best for digestion. When I actively work to slow down to match his timing, I seem to enjoy the meal more and not eat as much. Having a conversation can be challenging as his brain moves more quickly than his mouth, but when he is given time to communicate, he is still able to make his thoughts and opinions known.

The biggest change I have had to make is planning for the extra time. I know spontaneity is no longer a part of our lives, anything we do has to be scheduled and allotted the appropriate time. I can choose to accept that life simply moves slower now especially when it means that my patience won’t be constantly under attack and I will be ready to go when he is. Perhaps I just need to appreciate those moments when I can view it as life being lived in a more leisurely manner?

I absolutely love my support group people; they are so understanding about the everyday things I am facing as a CarePartner because they are living it too. But, and this is a big one, they are part of it. They are also immersed in this disease and being with them, while it is fun and supportive, is a piece of my whole PD journey. I need to find someone who is not connected to my husband’s illness and who can instead focus on me and issues I face. I know it sounds selfish, but I need someone in my circle who is able to focus specifically on my stuff and not because my husband has PD.

Since all my friends and acquaintances know the situation, I find myself searching for a professional. I need a counselor who can listen and provide advice as I age. I need someone who can help me figure out how to stop stuffing feelings away, especially about things that matter. I need to figure out how to better deal with my own concerns because they are getting in the way of living life fully. I need someone to talk to about me the Person, not me the CarePartner.

It’s difficult to admit that I need help and even more difficult to ask for it. I have a list of counselors that my Primary Care Provider gave me, now I need to narrow the search down. She suggested going to Psychologytoday.com to see if I could get more information about the providers and their specialties before making an appointment and that will be my next step. Then, I’ll make the call and hope for the best. It’s time I find someone just for me who won’t come with a PD filter.

I wish I had remembered to do this yesterday. My husband was always the one who cared for the lawns. I have taken over that duty out of necessity and a big piece of that care is setting sprinklers. I think he feels guilty watching me work so he tries to help. I have a system that works for me that is different from whatever he was doing before. Last night when I went out to get started and he offered to help, I knew that I should say “no thanks”, but I really hate to discourage him from doing what he can. Needless to say, it didn’t take long before I was grumping at him because “I have a system and you’re messing it up!” followed by “Just go back inside and leave me alone to do this!”

Wow, if only I had taken a breath and a moment to think before letting those words fly out of my mouth. I totally get why he wants to help and appreciate it most of the time; last night I was late getting started and just wanted to get it done. I didn’t consider that he would approach the process differently and that it might cause conflict. I also forgot that my husband is more important than the lawns, I need to care for him first and everything else comes after.

As soon as I finished setting things up I came inside and apologized, but once those harsh words are out they stay for a while. His feelings were hurt and I felt like a heel. We will get past this, but I know I need to try harder to make sure that it doesn’t happen again. In the future I must learn to be more patient, more understanding and never grump at him over something so insignificant. Instead, I’ll grump at his diagnosis of Parkinson’s that puts us in these difficult situations.

There is a saying that “when you know one person with Parkinson’s you know one person with Parkinson’s” but when you are in a PD support group you get to know many people with Parkinson’s. We were about 8 years into my husband’s diagnosis before we found our first support group meeting and I am so glad that we did. The fellowship that comes from being with people who are all facing a chronic and progressive illness is remarkable. Discussing actual experiences helps all of us better understand his diagnosis as we share information we won’t or can’t get from a medical team.

Parkinson’s presents with a broad spectrum of symptoms, many of which were represented in our new circle of friends. We met People with Parkinson’s who were at all different points in their journeys, some newly diagnosed some long-timers, some with young on-set, some older folks like us, some women, some men, some with physical challenges and others facing cognitive decline.  There were wheelchairs, walkers and some who strolled in as if nothing was wrong. Becoming part of the group gave us opportunities to watch as this disease progressed in different and sometimes more severe ways.  And in some cases, we even had the opportunity to say goodbye.

As difficult as it is for us to watch as friends go downhill, I also know it is a good thing that we are here to share it with them and especially their CarePartners. They all need to be surrounded by people who can appreciate what is happening and offer support. We need to be a part of this group of wonderful people at all stages of my husband’s illness and understand what the future might hold for us. Yes, it may mean we face losing more friends, but we gain so much more from having known them. We all need to be here for each other, holding hands as it were, to make the journey less traumatic for everyone.

There are many difficult decisions that I have faced as a CarePartner, things like when to ask my husband to stop driving or how to keep him off ladders. Most of those decisions were based in his physical challenges, the tremors or stiffness that make doing certain activities unsafe. It was an easy call to say “no, honey, I just don’t think you should do that anymore” and blame it all on the progressing symptoms of his Parkinson’s Disease. Using his PD as the reason made many of those tough calls easier for both of us.

But now something has come up that has nothing to do with his diagnosis. We have an elderly dog and are coming close to the time when we will need to put him down. Saying goodbye to a loved pet is always difficult and was a decision that we shared in the past. My husband’s physical and emotional states are impacted by his disease so when it comes time to say goodbye to our pup, I will be the one to make that final decision and necessary arrangements. A decision that will be based partly on my personal limitations as I can care for my husband or I can care for the dog, I don’t have the capacity to continue caring for both. And yes, that realization brings a boatload of guilt and feelings of incompetence. Why can’t I do more?

So, this tough choice may not appear to have anything to do with my husband’s diagnosis yet his Parkinson’s Disease does play a part as I try to decide what to do. I know my husband will let me take the lead on this and agree to anything I choose; he understands the added burden caring for the dog brings to our lives. My challenge will be finding a way to accept that I am doing everything I can for both of them and I just can’t do anymore. It is time to move forward with what I know in my mind is the right decision, perhaps in time my heart will understand and follow too.

I take time on a daily basis to write in a journal, but I also take a separate moment to write in this blog. Allowing myself that space, that time, really helps me better understand the journey and gives me the strength to continue. Often my thoughts are random, sometimes related to what is happening in our lives and other times things I might have come across in a meeting or webinar. At any rate, here are a few of my ramblings, I hope you find them of value. And yes, I know they are written in third person because I find I pay more attention if it feels like they were written as instructions for me and not introspection by me.

• Make time to have conversations about anything but PD to help keep your world from shrinking too far.
• Support your partner’s independence whenever you can to help them maintain their dignity and to help you maintain your workload even if it does take twice as long for them to do things than for you to do it yourself.
• Listening is often the most valuable tool you can bring to the challenges you will face as a CarePartner.
• Expect interruptions in your day and you won’t be upset when they occur.
• Talk with your partner about potential futures so that you are both prepared for what might come.

And the one that I struggle with the most-

• Is it really tough or are you just making it that way? Look for ways to make the journey easier not more difficult and remember that it’s okay to ask for help when you need it.

My husband exercises six days a week and before every session he almost always says “I’m not ready for this today.” Then he gets his equipment set up and does it anyway. I was thinking about this the other day, and it struck me that his comment not only applies to exercising but to the Parkinson’s experience as a whole. Neither of us was ready for this, yet we keep on doing it don’t we?

Having a Parkinson’s Diagnosis reminds me of an old Star Trek quote “Resistance is futile.” Parkinson’s Disease is like the Borg invaders in that it is going to assimilate my husband’s body, but just like in the movie the battle continues. PD may win in the end, but not without one heck of a fight. We have to accept that PD is going to be with us forever, but we don’t have to let it control that forever.  

Which leads to another great quote, this time not from a movie but from Michael J Fox, one of my PD heroes. Michael speaks about acceptance, not assimilation when he says “Acceptance doesn’t mean resignation; it means understanding that something is what it is and that there’s got to be a way through it.” Yes, we have to accept my husband’s diagnosis of Parkinson’s Disease but we don’t ever have to stop fighting. If that means exercising six times a week, then bring it on and we’ll do our best to be ready.

I recently took a survey called the “Caregiver Burden Survey”, also known as the Zarit Burden Interview, that was developed forty years ago to help professionals and caregivers better understand the stresses they face. It is a quick questionnaire with a five-point scale that asks not about what you are doing but how you feel about what you are doing. Included with the assessment is a breakdown of what the different scores mean and suggestions of things to look for at each level of burden. The last page lists resources that were added following a 2013 Scandinavian study looking at what is needed to “unburden” a caregiver.

I had a copy of the survey for over a year before I finally decided to take it. I am not sure what I was afraid of, why I kept putting it off. Perhaps I thought that my burden was so small it wouldn’t even register. Or, perhaps I was worried that I would find out things were worse that I thought and I might need to take some sort of action. It took me about 20 minutes to answer the questions and I really had to think about a few of them. I learned that I am on the cusp of moving from the lowest level called “Little to No Burden” into the next level which is “Mild to Moderate Burden”. Not bad for being in my twelfth year as CarePartner for someone with Parkinson’s Disease.

Whatever my initial concerns were, now that I have completed the survey I am thankful for the clarity it brings to my role. There is a sense of relief in knowing that my feelings matter and should be recognized. It is also validating to see that many of the suggestions they make to avoid burn-out are things that I am already doing. My plan now is to revisit the questionnaire every six months to help me recognize how things are progressing. This survey will enable me to be aware of where I am in my journey so I can better understand and care for my own mental health.

For your own copy of the survey, visit Caregiver Burden Assessment on the AgingCare.com website.