It seems like my life is full of bad news lately, much of it related to my friends with Parkinson’s. I am happy that we can all share in our challenges and understand the value of having someone to talk with during difficult times, however, it can be really depressing. I have decided that it’s time to start looking for good news and sharing our victories alongside our struggles. Let’s talk about tropical vacations or coming home from the hospital feeling great. I want to hear about new grandbabies or share pictures of spring flowers in my yard. I need something to offset the losses we are all facing, no matter how trivial it may seem.

I recall learning somewhere that it takes five positive comments to counteract the effects of one negative comment. I wonder how that principle applies to positive and negative messages or activities? What I do know is that it is much easier to face my day when I focus on the good around me than when I let the bad creep in and take over. And let’s face it, caring my husband with PD is going to bring some bad stuff to my days. Even if my positive activities are minimal, something like making our favorite meal or playing with the cat, experiencing them fully can help change the tone of my day.

So here goes, my daffodils are starting to bloom, the sun was shining yesterday and I got to go for a walk in our neighborhood. We’ve been waiting on a new speech program for my husband and he finally gets to start tomorrow. We’re having dinner with friends tonight, something we don’t get to do often enough. Someone I worked with a decade ago reached out last weekend to say that she was thinking of me. That’s six positive thoughts. Maybe focusing on these things won’t make the bad go away, but it can’t hurt which may be all I can ask for in this journey as a PD CarePartner. I will tolerate the bad, engage in the good, and keep moving forward as I strive to live my life fully.

My husband and I were in our middle years when we met and married. Our relationship is built on three strong legs much like a milk stool. The first leg is intellectual, we can have intelligent conversations. The second is emotional, we understand and support each other on a deep level to face issues together. The third leg is a physical connection, we enjoy giving and receiving physical pleasure with each other. Parkinson’s has tried to cut those legs out from under us, particularly the third.

I know that some of our difficulties come from being older. We are both less limber than we used to be and certain moves are painful if not impossible. We can avoid those things that hurt and still hold each other close. We can still touch each other and share in the pleasures of cuddling, kissing and hugging. If something more develops, we are still able to find pathways to satisfaction even though it may look different than it once did.

It’s a Sunday afternoon, grey outside and no real plans. It may be a good day to play, we’ve talked about that for this afternoon. I like that we still have a somewhat active sex life, I do wish it could be more spontaneous. I have dreams that take me back to better times, but wake to our current reality and it’s okay. I have found that it is better to be thankful for what we have and grateful for what we once had, rather than sad about what we’ve lost thanks to PD. We’ll keep working on that third leg, whatever it needs to look like, because without it we’d fall over and neither of us want that to happen.

There are times when caring for my home and my husband becomes overwhelming. These are the times to remember that maybe I’m trying to do too much. When we first met, I was working for my husband and he taught me a very important concept. When he would assign a new task, he always checked in to make sure I had the time to take it on. We often had conversations about what tasks might have to go away in order for me to take on the new challenge. Unfortunately our current situation with Parkinson’s Disease doesn’t always allow that same flexibility.

When faced with a new or different task, the easiest solution usually involves letting go of something I do for myself. That frees up extra time and allows me to take on the new job whether for my husband or our house. Sometimes it’s really basic, if I’m doing this task today, what will I need to put off until tomorrow? Other times it’s looking at what I can stop doing altogether to free up the extra time I need. Choosing to delay or ignore self-care is not a great alternative though because those activities are what help control my stress levels and keep me calm. When I give them up or put them off, I am not giving either of us the best of care.

How do I decide which tasks to stop doing when those new challenges arise? How do I balance my care with his care and come out with a good plan? I am not sure that there is a good answer for this dilemma. I think that I am going to have to face each change as it comes and make the best decision based on where we are at the time. It may be that I have tasks I can let go, it may be that I can delay certain things, it may be that I find someone else to take some things on for me. And perhaps it is time to revisit those conversations we used to have so we can find direction and clarity as we face these new challenges together.

Okay, so we’ve all heard the thing about how there are no “dumb” questions, but today I am thinking that maybe there are. Those would be the questions that come up on my husband’s journey with Parkinson’s that I am just not ready to face. What happens next? Where will we be in 5 years? How much longer do we have together?

Advances in research, particularly genetic in nature, are promising. They can currently test for Parkinson’s and are working on identifying the unique strains that define each person’s journey. The hope is that one day they will not only diagnose the disease, but also be able to give you a picture of where your particular journey might lead. Neurologists would be able to differentiate whether you are going to face more physical or cognitive challenges based on changes in your genetic makeup. They may be able to hand each person with PD a roadmap, if you will, a tool to help them navigate the progression of their symptoms.

Which brings me back to my original premise…would I want to know where we are headed? If our medical team can tell us what is coming for my husband but don’t have any new treatments or interventions, what good will it do? I hate the current uncertainty, yet recognize that it also brings a sense of hope. His symptoms and our struggles could get much worse or they could just get a little bit worse or, just maybe, they could improve. I think that not knowing everything about our future is working for me. I won’t be asking the “where will we be” or “when will it happen” questions, I think the answers would be too much for me.

I had a unique opportunity this past week when my husband asked me to transfer some old photos from DVD’s to a hard drive. I knew they were pictures from our early years together but had no idea what I would actually find nor the emotions they would produce. It was like opening a door to the time we shared pre-Parkinson’s and it was wonderful.

There were photos of our wedding that I hadn’t seen in years. In those pictures I saw a couple who shared strength, resolve, determination, and a dedication to each other and to their relationship. We were ready to take on anything the world might throw at us. There were photos of extended family from gatherings and birthday celebrations and lots of pictures from trips, both far away and local. I found pictures of our pets; what a menagerie we’ve had. The pictures showed us living a life that looks nothing like today. I discovered a treasure chest of memories of the life we have shared that reminded me exactly why I am here today.

More than anything else those photos showed me the amazing man who agreed to marry me and the commitment we made to each other. My husband, the man in all those photos and the man I fell in love with, is still here. Our relationship may have changed but it continues to be just as important to both of us. We came together to share in life’s adventures and it’s challenges; this diagnosis is just one more thing we get to face together. As long as he is here and fully committed to us and to the fight, how can I not be? I’ve got this.

I am having a colonoscopy tomorrow. It’s routine and will only take me away from home for a couple of hours. I scheduled it to happen while our care provider is here so my husband won’t be on his own. My son has agreed to be my transportation to and from the appointment since I am not supposed to drive myself. I have things in place for the day of the procedure, unfortunately I didn’t plan as well for the past two days of prepping, which have been pretty ugly.

My husband sees the additional challenges I am going through right now and he is really trying to be helpful. He was accepting of the low fiber diet we’ve been on for the past week and understands that he may be preparing some of his own food, simple reheats in the microwave, over the next day or two. He also gets that I need to work through much of this on my own and is letting me handle it. Which is smart on his part because he knows that the more tired and hungry I get, the grumpier I get. And I don’t get to eat any solid food for the next day and a half.

It can be difficult juggling care for me and care for him when things like this come up. I jokingly asked him if he wanted to go into respite for a few days until this was all over, and of course he didn’t. Today I am wondering if that might not have been a good idea? I love him and want to be with him, but at a time like this when my focus is split, I am not sure I am providing the best of care for either of us. Were he not here, I would probably be spending today in bed, trying to catch up on the sleep I missed last night and the sleep I know I’ll be missing again tonight. Instead, I’ll be catching naps and doing as little as possible while dashing to and from the toilet. Fun times!

I struggle with this. I come from a long line of do-it-yourselfers. My Dad was the duct tape king. I even remember a time he taped the side mirror back on his truck and drove it that way for months. So know that I don’t like to accept that I have limits. If it’s broken, I want to fix it. I have to work to be realistic about what I can and can’t, should and shouldn’t do, especially when it comes to the safety of myself or my husband.

My can-do attitude is beneficial at times. It helps me with a lot of minor tasks around the house, those things that come up that we never thought we would have to face. I can change a broken light fixture, fix a leaky faucet, powerwash our patio and change the filters in our furnace. Heck, I can even clean gutters, not that I ever want to again. I can’t do anything that involves climbing on the roof, I can’t lift more than 25 pounds, I can’t use heavy power tools like our chainsaw.

The thing about understanding my limits is that I need to have a back-up plan. If something needs to be done and it’s beyond my scope, I need to have a list of people I can call for help. The next step in that plan is that once I make the call, I must let them do it on their schedule. My husband has been wonderful in helping me with this task by encouraging me to be patient. He has always preferred to hire professionals and get things done right the first time, which means we already have many people on standby. We have family who can help with the smaller things. Now, I just need to learn to make those calls and let them.

Compromise seems to be my password these days. What I “should do” and what I “can do” aren’t always the same. I find myself choosing between best practices in caring for my husband and what works for us. Let me explain. I know that a good diet for my husband’s Parkinson’s would include lots of fresh fruits and leafy green vegetables, chicken, fish and little dairy. We love our red meat, we love our ice cream, we love our cheeses. I try to create menu plans that include healthier ingredients, but what we like to eat matters because if we don’t like it, we won’t eat it.

Another compromise involves stepping back and encouraging him to do things for himself. I know that he needs to do as much as possible yet I often find myself pitching in to hurry things along, even where he is probably still capable of doing it on his own. I started helping him with his shoes and socks and now I’m helping him get dressed every morning whether he needs me or not. It’s just easier and it moves our morning chores along. But, am I cheating him out of opportunities to practice his skills? What will happen if I’m not available? Will he sit around in his pajamas all day waiting for someone else to help him, because I’ve convinced him that he can’t do it himself?

I have decided that figuring out what best practices looks like for us may mean letting go and/or modifying some of the accepted recommendations. It may mean understanding what we really need to live well with PD versus what someone may say we need. It may also mean having conversations with my husband to make sure that what I am doing are the right things for us. We are the ones living this life after all; perhaps it’s time to trust our own judgement. And acknowledge that I am always trying to do my best in the moment, whatever that looks like.

It happened today. I was rushing between personal appointments when my husband, bless him, needed help with the internet. His Zoom class was going in and out and he wanted my help to fix it. Or maybe I just perceived that he wanted my help, at any rate I had 10 minutes to get ready for my next appointment and didn’t have any time for him. So, I said “No, I can’t help you with that right now. If you can’t get it to work, you may have to skip it today.” Yep, I put my own stuff ahead of his and  held to it. Even better, the world didn’t come to an end and he was able to finally figure it out for himself.

What I found most interesting was that it seemed to bother me more than it bothered him that I couldn’t help. I am not good at saying “no” when people ask me for help, it makes me feel like I’m doing something wrong. However, I am now in a situation where if I don’t learn to say “no” sometimes, I never get anything done. Beyond that, I need to learn to let go of the guilt around saying “no” because it means I am saying “yes” to something else that is just as important.

Self-care matters. In the example I shared, I would have missed my own health care appointment had I stopped to work on the computer. I actually considered it for about 30 seconds before I came to my senses and did the right thing. It’s okay to say “no” as long as I know when to say it and don’t overuse it. As long as I am careful to make sure that I say “Yes” when it truly matters, we’ll do just fine.

Actually, I want this to be my plan for everyday. What if I could wake up each morning cheerful and ready for whatever the day brought. Patiently facing the difficult times without getting frustrated or grumpy. Finding a way though with a smile on my face. Recognizing those moments when things are working well and being grateful for any successes I have along the way. Finding peace and satisfaction in my role as a caring, loving partner. Wow, wouldn’t that be great?

But then I remember I am human. My day is going to bring challenges both in my role as my husband’s CarePartner and outside it. Things will happen and I am going to get upset with him, with myself, with the world in general. Hopefully there will also be times when silly things happen to make me laugh. The day will have it’s ups and downs and so will I. My task is to choose appropriate reactions no matter what comes.

It is impossible and inauthentic for me to try to always be upbeat. That doesn’t mean I can’t still be positive. My positivity is based in the fact that I know I have the capacity needed to fulfill my role as CarePartner. If my husband has the strength to fight this disease, then I can find the strength to stand next to him. Perhaps that is the true victory I need to celebrate daily, the simple fact that 14 years post diagnosis we are both still here standing strong in our battle with PD.