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.

I never realized how expensive it is to have a chronic illness in the family. In-home care is expensive as are walkers, wheelchairs, even canes can be costly. Add to that the additional expense from medical appointments and this disease can quickly become a financial burden. Thankfully we have some coverage through insurance but are finding that with elimination periods and co-pays it still can add up. I have found some support through a Caregiver Grant from our local PD Organization and another local organization that provides free Durable Medical Equipment, but there is always something more.

Money that we had put away for our retirement travels is now going towards home renovations like a barrier free shower and taller toilets. It’s really okay though because neither one of us is really into travelling anymore, it’s become too difficult. From that aspect, the changes we are making in our home have even more importance as we strive to make it comfortable for us as we age. I could say that we are working to spoil ourselves with a safe and warm home environment that replaces the exotic dreams we once had.

No one mentioned the financial challenges we would face when he was first diagnosed. Perhaps it is because there was so much else to think about, but it might have been nice to have advance warning. Thankfully my husband was smart enough to make sure we were both putting money away while we were still working so we are okay for now. We also have a wise financial advisor and a team of elder attorneys who are available to help us throughout this process. Thanks to them, I can put aside my worries and believe that as things progress our finances will continue to cover what we need. It’s just not how I anticipated spending our “retirement” funds.

And that progression can mean a change in your role of CarePartner. Life has gotten more challenging in our home as I am called to do more for my husband. We have added in-home care but still I don’t have the free time I had just a year ago. Because of this, I don’t have the time I once had to chronicle my experiences in this journey.

I find value in sharing my observations and I want to continue writing, but find that three times a week is too much. Starting today, there will be 2 blogs coming out each week, one on Monday and the other will be posted on Thursday. That will allow me the time to write meaningful commentary on our day to day lives as well as give me the time to live it.

If you are reading this, I know you will understand. Life gets complicated, changes happen and we adapt.

I find that getting rid of as many of the frustrations around helps me be less likely to take things out on my husband. His diagnosis is disturbing enough for both of us and I know that he doesn’t intentionally do things to get me worked up, it just happens. A great example happened this morning. I was fighting with our printer when my husband mumbled something to me in an effort to help. Already frustrated, I actually told him not to speak if he couldn’t speak clearly. I can’t believe I let those words come out of my mouth. I was upset with the printer and struck out inappropriately at him. I apologized, but the words were already out there.

I hate the changes PD has made to our lives but that doesn’t give me the right to punish my husband for them. He is fighting them constantly and feels them so much more than I ever will. Normally when I get frustrated with something he is trying to do, I remember it’s okay to be angry at the disease but not at my husband, and stop myself before I say anything. When there is something else already bothering me, I am not always able to filter through it and block the misplaced messages.

So, in an attempt to control my words, I work to control my environment. The printer mentioned above is several years old and breaks regularly, it has to go. Just like the warped skillet that I had for years before admitting cooking with it was driving me crazy and tossed it. There was the third toilet in our house that gurgled all the time until I finally shut off the water. The calmer I make our home, the less likely I am to strike out at my husband for things that are beyond his control. We have enough reasons to be frustrated on this journey with PD, we don’t need anything else around that might add to them.

We have been snowed or iced in at our house for several days now and it is starting to get to me. I am sleeping well, but still feel tired thanks to the seemingly never-ending cold outside. I feel like I should be working on tasks that I normally wouldn’t have time for, but my motivation is at an all time low. I don’t even find pleasure in reading right now, I think my eyes and brain are read out. I find myself looking up at the sky and calling out to Mother Nature to just give us a break!

So today, as we start our 6^th day of isolation, I turned to my husband and asked for what we like to call “a grunge day”. No showers, minimal meals and a simplified schedule. He agreed knowing that he can do what he wants, but I plan to take as much of a break from our regular routine as I can. I don’t know what I will do instead, I just need some respite.  

I am still stuck in the house, hoping for a reprieve by the end of the day. I just want to know that I have the option to go somewhere, whether I actually go or not. My husband heard what I needed from him and said yes, let’s hope Mother Nature does the same.