During my twelve years as a PD CarePartner, I have had opportunities to be a cab driver, a dietician/nutritionist, a housekeeper, a personal assistant, a wellness coach, a medical advocate, a nail technician, a handyperson (handyman seems so sexist), a landscaper and, at times, a nursemaid. I have so many different hats that I wear each and every day that, if they really were hats, I wouldn’t have a closet big enough to hold them all. I recently realized that amongst all of these hats is one that I often overlook but it’s probably most important, my negotiator’s hat.

This hat is the one I wear whenever I am working to overcome the many challenges we encounter. It may be something as simple as making calls to schedule appointments or it may be something more difficult as I take on the task of negotiating with my husband regarding his care. I get to negotiate with clerks and other customers when we go shopping and I get to negotiate with myself as I struggle to make time to get all of my tasks done.

Successful negotiation involves so many factors. I hear myself discussing, bargaining and debating things that I feel are important every day of my life. Thankfully, my husband is usually open to hearing what I have to say whether he agrees to it or not. Sometimes these discussions result in me talking to myself as I try to find the best way forward. My negotiator’s hat is beautiful (I imagine pink and glittery with ostrich feathers) and transitional as I work to figure things out so I can put on one of my other more sensible hats and move into action.

I know my husband better than of his doctors or the other specialists who work with him. I am here every day watching him exercise, or not, and have a better grasp of what works for him and what doesn’t. That is why, when his Primary Care Doctor offered him a referral to Physical Therapy during his last appointment, I spoke up and said “No”.   

When he arrived at his appointment with a black eye from a recent fall, she thought that a Physical Therapist might be able to help him work on balance issues minimizing the danger. She even offered in-home support before I spoke up and said that I didn’t think it would help. I explained that he went through two rounds of PT last spring. I then asked my husband to share how often he practiced the homework that he was given during those sessions. While he is motivated to exercise with his boxing group daily, getting him to do PT on his own time is impossible.

The medical professionals have a job to do and so do I. A big piece of mine is making sure treatment plans are grounded in reality. As I said before, I know my husband and I know what works for him. I also know that while he understands some of the limits his disease places on him, he is still going to test them every so often. His most recent fall happened when he leaned over to set something down on uneven ground even though he readily admits he has balance issues. It was no surprise when he toppled over. Our solution is antiseptic cream and bandages because no amount of PT is going to stop him from trying to do things he shouldn’t, I just need to be ready to help him when those inevitable falls happen. 

It’s difficult to be positive when I see what this disease has done to my husband and to our relationship. Intimacy is challenging, lines of communication are tangled, roles are muddied. There is the knowledge that many changes are still to come. The uncertainty of where it will lead, what will be asked of me. It can seem impossible to find anything to be grateful for.

Add to that the shame I feel in those moments, shame that I am not stronger and more able to see the positive sides of this illness. I should be thankful that my husband is still with me, several of my friends are now widows. I should be thankful for the lifestyle I lead, while it is not what I expected in retirement, I am comfortable and my basic needs are well met. I should feel gratitude upon waking each morning just to see the new day ahead rather than wondering what new challenges are coming my way.

I am lucky in that the symptoms my husband’s illness has developed are manageable and our lives are not more impacted. I need to remember just how bad things could be, my father was wheelchair bound and lost in a world of hallucinations by his 6^th year post diagnosis, my husband is twice that far along now and showing very minimal cognitive changes. I need to be grateful for where we are because gratitude will lead me to a positive mindset that will allow me to continue in my journey. There are plenty of opportunities for me to be negative, I need to build a positive core based in gratitude for what I do still have and let that be the strength I lean on each and every day.   

We recently met someone who had just been diagnosed with Parkinson’s Disease and was still trying to figure out exactly what that might mean. He asked many questions and observed my husband carefully as if looking at him might be a clue to his future. We both realized that the most important information he needed to hear in that moment was “If you’ve seen one person with Parkinson’s, you’ve seen one person with Parkinson’s”.  My husband shared that watching him was okay if he wanted to discover how PD was presenting within my husband, it would not show what the diagnosis might mean to him.

I remember being there early on in our journey. I was afraid of joining a Parkinson’s support group because I was afraid of what I might see. I expected that there would be people who were more seriously impacted and I didn’t want to think I would be looking at our future. My only contact with Parkinson’s Disease had been with my father and it was ugly. I wasn’t ready to face the possibility that we might be there ourselves someday.

We talked with our new friend, answering some of his questions, and gave him information on all of our local resources. We encouraged him to stay in touch. Most of all we encouraged him to always look at what he can do, not what he can’t. Our key to beating Parkinson’s is always to keep a positive attitude and to keep on fighting. He can’t know for sure where PD will lead him but he can still live a full life, and that is the piece of this journey that I know we can share and model for him.

We have been working on our house for a couple of weeks now, updating one of our bathrooms to ADA standards. As with any project there have been issues, minor glitches along the way. It has been difficult for me to keep still and let the contractor and his team take care of things. I am a fixer, this is my house, and I want to fix it. But, I have enough on my plate already, and I am not a builder which is why we hired them to do the work in the first place. I just need to stay out of the way and let them do their jobs.

We have pets, a dog and a cat. My husband has always been the dog person and has been primary in caring for him. As the dog ages and my husband’s Parkinson’s symptoms progress, some of the dog related tasks have become more difficult and I find myself stepping in to “help”. What has actually happened is that I have taken over some of the things he was doing under the pretense that it is easier for me. Of course the tasks are easier when I do them, but that doesn’t mean I should be taking them away from him. I have enough to do without stealing his chores.

My life as a CarePartner is full as I try to juggle caring for our home, making sure my husband’s needs are met and finding some time for myself. When I accept, no when I take over, tasks that actually belong to someone else I am just asking for overload. I can only do so much and do it well, I need to leave tasks that belong to others alone and give them the opportunities to display their abilities too.

My husband is always ready to try to do things to help, yet he is also usually aware of the limitations his illness places on his abilities. He knows that he tires quickly and will stop and rest, he knows that he is not as strong anymore, especially on his left side. He knows that he shouldn’t use power tools because his reflexes just aren’t as quick as they used to be. And he knows that he has balance issues which means he shouldn’t be leaning over to pick things up or set them down, something that was driven home to him just yesterday.

I went out to do some yard work and, in typical form, he followed me out. I was clearing out weeds and he was trying to be helpful. I asked him to bring me something from the house and when he did, rather than handing it to me he attempted to set it on the ground. He lost his balance and toppled over bumping his head, shoulder, and knee on the concrete before rolling to a stop. I immediately moved from the role of minimal to maximum caregiver as I helped him get up and go inside to assess the damage. Needless to say, my yardwork was done for the day. Ice packs, bandages, and ibuprofen for him, a glass of wine for me and we made it through.

I can only imagine how difficult it is for him to have to be sidelined as I work doing things we used to do together. He wants to do them but, unfortunately, PD has another plan in place. I thought I was giving him tasks that were safe and that would allow him to help, I was wrong. I must remember to discuss any shared tasks and look for any potential issues before starting. And, I must take the initiative to tell him when I think that he needs to step back and observe for safety’s sake. 

My husband doesn’t stumble on purpose, he doesn’t shake because he wants to, and he certainly doesn’t enjoy taking medication six times a day. He didn’t ask for the rigidity or the challenges he faces when trying to communicate. He wouldn’t have given up driving or the chores he did around our home unless it was absolutely necessary. He did not ask to be diagnosed with Parkinson’s Disease and I cannot blame him for the changes it brings to our lives.

Yes, I do get frustrated at times when I am waiting for him to do something or just move to get out of my way. Yes, unkind and even harsh words come out of my mouth and I immediately regret them because I know he can’t help being slow or stiff. It is easy to direct my anger at the person standing in front of me rather than the disease that causes his neurons to misfire, but it isn’t fair.

Recognizing the challenges that this diagnosis creates without placing blame includes understanding and accepting that my life is going to change. I can make choices about how much it will change, but must also acknowledge that PD is a shared journey. I loved my husband before his diagnosis and that is the one thing that won’t change. Accepting new challenges doesn’t mean I am giving up on my life, it simply means I am opening my heart to share a different pathway that can be just as fulfilling if I let it.

Our plan for retirement, like so many others, was to travel the world. We looked forward to exploring new locations and learning about other cultures. Then Parkinson’s hijacked our journey and the places we now explore are medical offices, the culture we are learning is that of the chronically ill and the PD community. Not really what we expected.

I was disappointed for a while but then realized that I don’t enjoy long flights and the jet lag that accompanies them. Since the pandemic struck, travel has been unsafe or unavailable to us anyway. So, my husband and I took a look around and decided that it might make more sense to put the money we would have spent travelling into more realistic dreams like upgrading our home. Since we aren’t able to travel to luxurious places, why not try to bring some of that into our daily lives?

Dreams are important but they need to be realistic. My life changed the day my husband was diagnosed with Parkinson’s Disease. Our reality shifted and my dreams have to shift and adapt to a new life. I am finding, however, that it doesn’t have to be bad. Maybe I can’t fly to Europe and take that ten-day cruise, instead I am going to have a beautiful new bath with a barrier free shower that I can enjoy every day. And, when I want to see those European sights, I can view them on my smart tv from the comfort of my living room. It’s the next best thing to being there and I won’t be exhausted by the trip. I may miss some components of the experience, but it won’t stop me from enjoying the journey as long as my husband is here to share it with me.

As my husband’s illness progresses, his needs change, and my responses need to change too. When he was first diagnosed, he was working, driving, taking care of his daily needs without my help or interference. My only responsibility was to accompany him to his appointments. We both were aware of the illness, especially the tremors, but it wasn’t really impacting our lives. He was in early PD or stage 1 where his symptoms were mild and he was able to function well without assistance.

His tremors started on the left side but after a couple of years we noticed they were moving into his face and then his right side. His smile disappeared and his body became rigid. He was definitely in stage 2, still considered early PD, when my CarePartner duties began to increase. He needed some assistance dressing, speech and driving became more challenging. Not long after this he decided to stop working and most of the chores he had been doing around the house suddenly became my chores including yard and home maintenance. He chose to stop driving and didn’t leave the house unaccompanied. We were about 8 years into his diagnosis when he reached the mid-stage of PD, also referred to as Stage 3, where challenges are considered moderate.

His tremor and rigidity were debilitating and defined my duties as CarePartner. I found myself having to help him dress, cut his food, basically any activities that required small movements were beyond him. His speech had become soft and he struggled to find the right words so I often stepped in to help him communicate. I stopped working to provide 24/7 care and PD was the epicenter of our daily lives. It was at this point that I finally convinced him to discuss treatment options with his Neurologist who recommended Deep Brain Stimulation. While he will speak of the challenges having the surgery brought, I am thankful for the relief it brought to my role. We went from borderline stage 4, or advanced PD, to a level more in line with early stage 3, mild to moderate symptomology. He is back doing many of the things he was unable to do pre-surgery and that has lightened my load tremendously.

None of our medical team focus on the stage my husband is in, we simply discuss where we are and what we need to do better. I am available to him for whatever support he needs, but recognize that my role as CarePartner has its limits too. If, and when, he moves into the more severe stages of this illness we will have to look for additional help. I need to be able to still be his loving Partner, when the Care component becomes too much for me to handle.

More information on identifying the stages of PD can be found at 5 Stages of Parkinson‘s Disease (healthline.com) and MDS-Unified Parkinson’s Disease Rating Scale (MDS-UPDRS) (movementdisorders.org).

We work out with a coach who has us repeat positive affirmations during every session. We say things like “I am amazing” and then she explains that we are amazing because we keep showing up to class even on days when we are tired or unmotivated. Tying the positive affirmations to our actions gives us reasons to believe what we are saying and adds meaning to the words. 

This same principal comes into play when I am struggling with my role as CarePartner. There are days when I feel like I do nothing right and that the tasks are never-ending. I could stop then to tell myself how wonderful I am, but it would be a meaningless exercise for me. Instead, I take a moment, take a deep breath, and remind myself that I am resilient. I rejoice in the fact that, although I am having a tough day, I am still standing and trying to move forward. I commend myself for having patience and determination. My positive affirmation is customized based on where I am in that moment which gives it meaning.

False affirmations are just like false praise and, while they may distract me, they will not reenergize me for the day ahead. Acknowledging the real strengths I possess helps me develop and maintain my positive mindset. I am not always fabulous or creative, but I truly am amazing because I am open to all the challenges being a CarePartner for someone with Parkinson’s Disease brings to my life.