The holidays are a great time for plans. I have a plan for shopping, we have plans for family activities and plans for private time together, we have a plan for all those family and personal traditions. What I don’t always remember to plan for is when everything goes sideways which can happen so easily with Parkinson’s Disease. It can be a fall, a virus, an appointment that can’t be changed. There are a lot of potential complicating factors when you are dealing with a chronic illness.

One basic tip to remember when making any plans is flexibility. We never know for sure that any given day is going to be a good or bad one. What I do know is the stress that comes with holiday gatherings always triggers my husband’s symptoms so things can change quickly. I make sure to communicate this to friends and family. I let them know that whether we are able to participate in activities can be dependent on the day and we may only have a short window of time to be there.

This year the sideways jaunt had nothing to do with my husband’s diagnosis but instead is because of a death in the family. We learned mid-December that a cousin had lost her battle with cancer. The day we had set aside for our family holiday celebration is now the day we will be attending her memorial service. A phone call and a couple of texts and now the family get-together will be a recap of the holidays sometime in January. Flexibility, adaptability, and reality working together will allow us the opportunity to celebrate even if it isn’t quite what we planned for in the first place.

I have been co-facilitating our local Parkinson’s support group for a few years now. It was something I enjoyed and something positive I could do in response to this challenging shared diagnosis. During a recent meeting I was speaking with fellow CarePartners about how busy our lives can get and the many hats we are called upon to wear. We talked about which hats could come off to relieve some of the stress we face. It was an eye opening experience for me.

There were a few hats that I couldn’t let go of, particularly those that involve personal care for my husband when no one else is around. Then there were the hats that involved caring for our home so we have a safe and sound roof over our heads. Financial management, shopping, generally interacting with the world at large are essential tasks that I must provide so those hats stay in place. One hat I realized I needed to take off was the one that involved the support group. I recognized that as my role as co-facilitator was impacting my role as CarePartner which was the indication it was time to step aside.

Just as my  husband’s disease is progressing, so is my role as his Caring Partner. There is more responsibility every day and as that increases I must realistically adjust my life in other ways to make it work. I know there are other hats that will have come off, but am happy that for now we can still come to support group meetings. I’m looking forward to putting that simpler attendee hat back on.

Please excuse this reprint of words I wrote a few years back. A friend recently asked “How do you do it ?” referring to the challenges I face as a CarePartner. I think these words provide the best answer.

This is definitely not how I expected life to be when we both retired. We were going to travel and I was going to have time to explore new interests. I was going to write a novel and finally get it published. Life was going to be easy and fun. Then, my husband developed a tremor that shook our entire world.

And so, our plans have changed. Not quite the travels we anticipated, we get to go back and forth to visit his neurologist and other specialists regularly. Instead of writing that novel, I am writing a blog about caring for someone with a chronic illness. The new interests we have developed all focus on PD and finding ways to make life better whether it is through boxing or support groups. And all that extra time I was going to have? I spend it doing work around our home, chores that he once was able to do, or helping my husband with his daily living activities.

Yes, I do miss the carefree man that I married and yes, I do wish he had never been diagnosed with this illness. There is a sadness deep inside, a piece of me that grieves the life we might have had and wonders where it might have taken us. I miss his easy smiles and quick wit. Yet, I know that he is still here with me. So, on those days when I am feeling particularly nostalgic for what might have been, I take a look beyond the PD at what we do still have and find the love. We are still here, we are still moving, and we will keep on fighting this disease together. As I grieve for what might have been, I will rejoice for what we still have and look forward with an open heart to new opportunities we will share in the future.

For more on dealing with your feelings of grief check out this article entitled “Grief and Loss” on the Family Caregiver Alliance website.

This is one of the more difficult challenges I face with my husband. We don’t always agree on which mobility aids might be beneficial. I fully support his drive to do as much as possible for himself while he still can, however, there are aids that could make life easier for both of us if he would only consider using them. He has accepted transfer poles next to his favorite chairs and grab bars in the bathrooms. He reluctantly started using a cane and then a walker on the advice of his physical therapist.

I have been looking into getting a Transport Chair. It is a light weight wheelchair not intended for full time use and would be nice for those rare occasions when we want to do things that stretch his current capabilities. We used to love going for walks along the waterfront. Walking with him when he is using a walker is stressful as I am constantly watching to make sure he is okay. With a transport chair, he could walk until he got tired and then ride to enjoy the rest of our walk.

I wish I didn’t have to think about these things, I sincerely wish he was able to do everything we once did together. That is not possible. So, I am trying to find workarounds, ways we can still enjoy some of our former activities without taking away from his dignity or independence. I know a transport chair is scary but it doesn’t have to be. If I can help him look at it as a tool that can enrich our lives, then perhaps he will be able to accept it. I would really like to be able to go on outings together again.

Today I need time to myself to get caught up with some writing and some reading. I would love to be able to lock myself away from the world and put on some calming music. Thankfully our caregiver comes this afternoon, unfortunately she likes to talk, I really wish she would direct it more at my husband. He needs the conversation, I need the quiet.

We have been getting in-home care for a couple of years now and it is still difficult for me to let go and let someone else take care of my husband and my house. If I am here I feel like I need to be engaged, involved, interacting with them. In order to get a break I find myself making up excuses to go out, get away from the house for a couple of hours. But how often can I sit alone at a coffee house or walk the mall? There are times when I really just want to hang out here.

All that is left for me to do is to let everyone know what I need specifically this afternoon and I should be able to take that break. It’s what I want, it’s what I need, but it won’t happen unless I ask for it. Simply telling them that I’m not leaving the house but I’m not accessible unless it’s an emergency, allows me to go back into my space and let the caregiver take over. Then I can put on my headphones, light a candle and zone out trusting that all will be okay. Because it will.

Need I say more? It took me a while to figure this out and I still have to remind myself on a regular basis. I am living in unknown territory as a CarePartner. Things are happening that are out of my control on a daily basis and I can’t fix them. It is frustrating and nerve wracking and I want it all to stop! But, even saying those words makes me cringe because what would that mean? I am definitely not ready for our journey together to be over. How can I even have those kinds of thoughts?

I have those thoughts because I am human. I am not perfect, I don’t know everything and I can’t do it all. I need to cut myself some slack because no matter how hard I try to keep things going smoothly, my husband’s diagnosis of Parkinson’s is going to complicate our lives. Feeling frustrated and powerless is simply where I live these days. I can only do my best with each challenge we face and I have to understand that’s okay.

I will never know why we were chosen by this disease but I will continue to try to make the best of it. That starts with a huge dose of tolerance for the challenges he faces and understanding for any mistakes I make in caring for him. I can only do what I can do and I know it will always be done with love and acceptance for both of us. Meanwhile I try to find patience along the way.

There is a wall behind my computer desk that has a picture of me from about five years ago when I did a local zipline tour. I am standing on a suspension bridge that is part of the tour and have both my hands out as if I’m celebrating. It’s a great reminder for me that I am braver and more capable than I ever give myself credit for. It also represents something I did successfully on my own. My husband, who has always been afraid of heights, was waiting for me at the head of the trail. Looking at it makes me smile.

Next to the picture is a copy of the first contract I received for my writing. It’s for a silly poem that I created earlier this year that was accepted by an on-line literary journal. It’s the first official document that refers to me as an author, not a small accomplishment for someone who only writes as a hobby when she has time. The most important thing about these two items is that they have nothing to do with my husband’s diagnosis and represent me as a person, not as a CarePartner.

Parkinson’s Disease is only one piece of my life, not the entirety. I sometimes forget this when caught up in the throes of caregiving. My success wall helps me remember that I have to be here for my husband but I need to be here for myself. One more note posted up there says “PD may be coming along on my journey, but today it’s taking a back seat.” A very good reminder for those times when I am feeling overwhelmed. Even though caring for my husband can be consuming at times, I am still the woman he fell in love with all those years ago. It’s vital for both of us to reconnect with that reality at times.

I have been writing these messages for six years now, that’s over 800 separate posts talking about how my life as a CarePartner is going. More than 200 times I have talked about gratitude, thankfulness and appreciation for the opportunity to be with my husband on this journey. As I review those postings, many were written during difficult times, times when I was feeling lost or exhausted. It was particularly in those times when I needed to fall back on the love we shared to keep on going. I had to step back to remember the why of this journey.

As philosopher Friedrich Nietzsche once said, “He who has a why to live can bear almost any how.” I  have found my why. Sharing this life with my husband is the best reason I can imagine for finding my how when it comes to facing and overcoming difficult challenges. His PD diagnosis isn’t my why, instead I look at our lives together in their entirety. I am so grateful for what we have shared together and look forward to even more good times ahead.

Which brings me back to my original thought. When life seems to be unbearable I stop and find something to be grateful for. Some days it is as basic as getting out of bed together one more time. I take a moment and find thankfulness for the opportunities this life has brought me. As his symptoms progress the difficult times will increase, yet I will always have all of these great memories to fall back on. And gratitude will see me through.

To see more about this quote from Nietzsche click here.

So much wisdom in those words. I overthink everything and create barriers where they don’t really exist. My “what if” column never includes what if everything goes well? I look at the challenges in an activity and let them guide my decisions instead of looking at the opportunities. Life is tough as a CarePartner and it’s going to be tough regardless of whether we’re at home or out and about. Wouldn’t it be better to have some fun along the way rather than hibernate because of imagined problems?

My husband has always been a can-do kind of guy. From day one of his diagnosis he always focused on what he can do, not worried about what he can’t. I, on the other hand, am the doomsayer in the relationship. In an abundance of caution I try to make sure that everything we do is safe. Life brings risks, especially when dealing with a PD diagnosis, and I can’t eliminate all of them. That doesn’t mean we have to stop doing everything we enjoy.

It may be time to shift my perspective. When I am considering an activity that seems too challenging, I will step back and remind myself that difficult is not the same as impossible. Is this something we both want to do and will we enjoy it? If the answer is yes then I move forward to figuring out what I need to do to make it happen. Life goes on and we get to participate, not sit at home and wonder what if.