Self-advocacy for a CarePartner is not always about health. It can also be about the help you need to have a fuller life alongside the challenges of loving someone with PD. I don’t always want to be in the role of caregiver, sometimes I want to be partner and wife, other times I just want to be me. Unfortunately, my husband’s Parkinson’s Disease doesn’t care what I want. It falls on me to figure out how to push back to make sure there is room in our lives for both of us to exist.

I used to feel selfish doing things without my husband until I realized it was necessary. I don’t have this disease and while I love him and want to support him as much as possible, I can’t let this disease that is slowly taking him away take away my life too. Even writing these words is difficult but it is a truth. I can let PD overtake us both, or I can do my best to give him a good life while still maintaining some semblance of who I once was.

Everyone has to make their own choices about how to live as a PD CarePartner. I am discovering that I can give more when I take the time to get more. In other words, finding outside interests, taking regular breaks, accepting help, utilizing the resources available to me are vital to maintaining my sanity and allow me to be more present for my husband. Meeting my needs better meets his needs, who would have thought it?

I participate in the Insight study being done by the Michael J. Fox Foundation and they asked me to take a survey “exploring life satisfaction in people with and without Parkinson’s Disease.” It is an interesting request because, even though I am not the one with the disease, I am not able to give them a true picture of someone without PD. My husband’s diagnosis definitely impacts my life and my answers.

The questions they asked were pretty basic in their attempt to see how satisfied I am. One question that really struck home asked if I was leading my “ideal” life and if not, would I make changes. No, there is no way I am leading my ideal life and yes, I would definitely make changes. Parkinson’s Disease would have been cured years ago and we would not be living with the ramifications of it daily.

At the same time, they asked about my personal situation, finances, health, friendships, even my sex life. They wanted to know if I was satisfied with my partner. As I pondered these questions I realized that I actually am pretty satisfied with the life we have created in spite of the challenges. We have a roof over our heads, we have food and the tools to prepare it, we have the support we need from our community, we have love. I can be a Parkinson’s CarePartner and still find satisfaction in my life as long as I remember to focus on those things that really matter.

If you would like more information about the Fox Insight study and how you might participate visit Fox Insight.

My journey is not the same as my husband’s and we have different challenges. I can never fully understand what he is facing just as he can never fully understand my stuff. For this reason it is good to keep open communication lines between the two of us, especially when things go sideways.

I have been dealing with weakness and pain in my right leg. After ignoring it for months because I was convinced it would just go away on its own, I finally talked to my husband about it. He insisted that I get it checked out and so I made an appointment with my PCP. She had no answers and suggested that maybe a PT could help. My first thought was ‘when do I have time for physical therapy?’, but I agreed to the referral and figured it would work itself out somehow. I was surprised to get a call to schedule within a week and then to have an appointment the next day. Dang, was I really going to have to go through with this?

I have had two appointments with the PT now and things actually are feeling much better. I hate to admit it, but my husband was right, I did need to be seen. Had I not spoken with him, I would still be limping around, suffering in silence, and my ability to care for him would be impacted. Shared challenges are more easily overcome as we are doing PT exercises together to keep each other accountable. It’s turned into a winning situation for both of us.

A recent mindfulness session turned from the regular weekly practice to a presentation about a Buddhist Parable known as “The Two Arrows”. The basic premise is that life will bring challenges and they are like an arrow being fired at me. My mind overreacts in unhelpful ways and causes a second arrow to be fired. That second arrow comes from negative emotions and is something I do to myself. As an example, if my husband being diagnosed with Parkinson’s was the first arrow, my constant questioning of ‘why us’ or ‘why me’ is the second arrow making the situation worse. This is a very simplistic definition and I would encourage you to do your own research for more complete information.

What I learned during the session was that when challenges occur I have choices. I can accept the challenge and move forward, or choose to question it which increases stress levels and gets me stuck in the whirling feelings in my head. Just because my husband had a fall today doesn’t mean he will be in a wheelchair tomorrow. Just because I burned our dinner tonight doesn’t mean I can’t cook. Those second arrows, or negative thoughts, turn a difficult situation into an overwhelming and hopeless one. I must find ways to stop firing them at myself.

Again, I am not a Buddhist and can only speak to my understanding of this parable. What I take from this message is the reminder to stay in the moment, meet whatever happens with the knowledge that I am enough and I can face whatever it is. One particular bad situation doesn’t tell our whole story. When I ignore my negative self-talk, I can deflect that second arrow before it strikes.

Do something just because you want to, not because you have to. Buy yourself a special treat and don’t share it with anyone. Heck, don’t even tell them about it. Find a safe space in your home and hide there. Say no to a request for your time. Dig in the dirt for no reason at all. Scream into a pillow. Break something. Leave the chores and take a nap. Pat yourself on the back for the wonderful job you are doing every single day!

I have a difficult journey but so do many other people. I could sit around and complain or I can get on with it and find ways to stay sane. There are going to be days when it feels like the world is dumping on me but there are also going to be days when the sun is shining and all is well. I know which I prefer so I am going to focus my energy on those positive times and let the negative go.

Yesterday was a very busy day, we had a plumber come in to fix our kitchen and bathroom sinks, my husband had a PT session and I had a friend stop by for a visit. Yet with all the disruption, we made it through. And I only had to use a couple of the coping strategies in the paragraph above, I’m not telling which ones. I hope that you can find a couple in the list that might work for you. Coping with the stressors I face and making it through, my primary goals for living as a Parkinson’s CarePartner.

The only problem is when the stories all become dark and dismal so no one gets anything from the encounter. It’s easy for me to see the dark side of Parkinson’s and sometimes I get hung up thinking about what we’ve lost or what we’re missing out on because of my husband’s diagnosis. I forget the good this journey has given not the least of which is a wonderful group of friends to travel alongside us.

Finding a Parkinson’s Disease support group was like coming home. Suddenly to be in a room surrounded by 20 other people facing similar challenges was eye opening. We didn’t have to face this alone. Now that I am part of the local PD network, it is my responsibility to pass that same support and comfort on to others. I need to be able to listen with empathy, compassion and acceptance. At the same time, if I can bring some levity or positivity to the situation things are even better.

No one needs to hear all my stories of how difficult caring for my husband can be or how much I miss what our lives should have been. What is more beneficial are conversations about how we’re making things work no matter what. How I overcome the challenges and what I am learning or the mistakes I make along the way so we can laugh together. Most of all they need to hear that I’m able to find light on even the darkest of days, because that’s what keeps me going no matter what.

We’ve been on our journey with Parkinson’s for almost 20 years. I am very grateful for the fact that my husband is still with me and doing well, but didn’t expect it to last this long. Just writing these words makes me feel guilty for even having the thought. It’s a confusing and difficult mindset. I want him to be with me and I generally enjoy our time together, I just wouldn’t wish this extended journey with Parkinson’s on anyone.

Had I known early on what was coming, I would have retired sooner and we would have travelled more. Had I realized how long the road would be, I would have insisted that we find and hold on to outside interests so that Parkinson’s would not have such a stranglehold on our lives now. Had I understood the ramifications of long term chronic illness on the caregiver, I would have hired help sooner so that I could have had more time as his wife and less as his caregiver when it was still possible.

Pacing myself for long distance when all my life I’ve been a sprinter is not an easy task. I have adjusted and accepted and adjusted again. I have grieved so many little losses and will continue doing so. I have also celebrated little victories when they happened, they just didn’t happen often enough. Most of all I have learned that if I am going to make it through another day, let alone another year, I must allow myself to be human. I must accept and respect my limits and provide care for him that is realistic for me. It’s the best way to take care of both of us.

We are getting to welcome two new caregivers this week. That means I am getting to break two new helpers in. It is good in that it gives me the opportunity to review what we ask of them and can make needed revisions. It is challenging in that I am not great at supervising others and really don’t like having strangers in my home. I am going to have to call on all my patience as I get things set up and running. I just keep telling myself that it is a temporary situation and that once they are trained all will be well. At least I hope so.

Change can be difficult for my husband too. Meeting new people and letting them into his circle of support is not always easy. We have had caregivers who came one time and he told me “never again”. We have had people he tolerated but didn’t really connect with. We had one woman who put in earbuds and didn’t hear him when he called for assistance and another who stepped outside to make private calls leaving my husband alone for extended periods of time. We both need to be able to trust that whoever comes is caring for him appropriately and keeping him safe.

In the three years we’ve had in-home care, we’ve gone through close to a dozen different people. I am hoping that these two new caregivers will bring a positive attitude and engage well with him. We shall see because regardless of what I think, his opinion matters most. He has to be comfortable with whoever we hire or it just won’t work. And I really need for it to work.

I wasn’t sure what in-home medical services looked like. I knew some of our friends were utilizing them but didn’t really think my husband would qualify. He was still somewhat mobile, granted with assistance devices, but I never really thought of him as housebound. Then his new Primary Care Physician took one look at him, asked a couple of questions and opened a new line of treatment for him. She asked if he could walk unassisted and if he ever left our home on his own. How difficult is it when we do leave? Based on his responses, she referred him for in-home Physical Therapy.

Having been through PT in a clinic setting so many times with limited success, I have been really surprised by the difference doing it at home makes. When the Therapist visits and works with him in his normal environment, they are able to see his full capabilities. They also work with what is available so he is doing some exercises at the kitchen counter and has a walking path in the entryway and living room to practice his gait. He uses his transfer poles to do high knees and has a chair with pillows for sit to stands.

I regret not looking into this possibility sooner. It hasn’t changed any of his other treatment plan, he still sees his regular PCP and neurologist, but if we need more services they are available to him. The organization that provides his PT also has Occupational Therapists, Speech and Language Therapists and Nursing services. All we have to do is ask. I finally feel like we may have access to that team we were supposed to have all along. Why isn’t this the standard of care for people with Parkinson’s?