It’s easy for me to get overwhelmed and then every little comment seems to be negative. I had a few of those conversations recently and I know I reacted inappropriately, letting my emotions get involved. First, let me share an interaction I had with my husband that made me shake my head. We were discussing trading cars when my husband turned to me and asked, “how much longer do you think you’ll be driving?” I was flabbergasted. I reminded him that I am a bit younger than him, I don’t have Parkinson’s, and am not having any difficulty driving, why would I be thinking of giving it up? I can smile about it now, but in the moment, I had to walk away to keep from grumping at him. I definitely overreacted.

Now, on to another comment that I could have handled differently. A representative from our long term care insurer calls once a year to check in and make sure that the coverage is still needed. It struck me as odd when the woman asked if he had recovered or if he still needed assistance. I answered all of her questions but after I hung up, I felt angry because she should understand someone with PD is not going to get better nor are his needs going to get less. Again my emotional reaction was more than the situation called for.

I realize that if I stop and consider where these comments are coming from, they really wouldn’t upset me at all. My husband was remembering when we had this conversation regarding his ability to drive. He didn’t mean anything negative, he simply wondered where I was on this spectrum. On the other hand, the young woman from the insurance company was doing her job. She has a script to follow and would have asked me the same questions regardless of her knowledge of his PD diagnosis. Hopefully the next time this comes up I will take a breath and smile, not bristle at their words. There are enough valid things happening to upset my days, I don’t need to take on any extras.

How do I say this kindly? The chances of my husband outliving me are very slim due to his age and his diagnosis of Parkinson’s Disease. Because of this, I have slowly been moving all of our accounts into my name or making sure they are in both of our names with me as primary contact. At first it seemed cold, almost calculating, for me to take everything over and yet it is much easier for me to do it all now than it will be when something drastic happens.

I have run into situations recently that reinforced my need to take care of these things. We bought a car together 6 years ago. At the time, we told the dealership that I would be the only driver and took out a joint loan through a credit union yet everything was put in my husband’s name. I went in earlier this month to pay off the loan and close out the account only to be told that, while I could pay it off, he would need to be present to close it. In another case, I got to call our internet provider for service issues yesterday and they had to confirm the account with my husband’s phone number before talking with me. It seems everything with them is in his name even though I am the one they have been dealing with for years.

Needless to say, I am reviewing all of our accounts to make sure that I am the primary contact. I thought I had done this already but obviously not. I don’t want to have to face this after something happens, it is much easier to be as prepared as possible ahead of time. Should he pass before me, I want to be able to grieve without the added stress of financial worries, I owe that to both of us.

We used to have big family gatherings for the holidays. My sister and I traded hosting the events which usually brought anywhere from 12 to 20 people together. It was fun but also a lot of work. Shopping, cleaning, cooking, made it a very busy time for me and my husband. Added to our already packed schedule were parties at friends’ houses, almost always in the evenings. As his Parkinson’s symptoms progressed, recovering from the parties took as long as preparing for them. I realized that maybe celebrating this much wasn’t the best way.

It was time to step back and look at what worked and what didn’t. I still wanted to get together with family in some capacity but the evening events with our friends had to go. I reached out to them and suggested that we might find other ways to get together, perhaps in smaller groups for lunch at a restaurant, and that works somewhat. As for family events, we have pared down to a simpler process and it has become more of a potluck buffet rather than a sit down dinner. This Thanksgiving I only invited our immediate family, just 7 of us in total, and it was great.

I decorate our house more simply and carefully choose things that I think have more meaning. I try to make some of our favorite foods even if it is for a smaller audience. I want family and friends to know that we are still here and love them all. We need those connections as we travel on this journey and it matters that they understand how things are changing for us since we may need more support in the future. I have figured out that bigger isn’t always better and that sometimes celebrating with just the two of us can be the best party of all.

My husband has been dealing with some bowel issues over the past month or so and we finally seem to be getting back to normal. But what will that look like? Every time something happens in his body the paradigm shifts and usually not for the better. I’ve been providing additional assistance in some areas; will that need to continue forever? Should I be pushing him to do more himself in an attempt to get us back where we were before this episode or let it go with the assumption that his capabilities have changed?

I know that I am not the only CarePartner who struggles with these questions. My husband gets sick or injured and I step in to do more for him as he is recovering. At what point, if ever, does that additional help need to stop? Is it unrealistic to expect things to get back to exactly the way they were since I know that Parkinson’s is a progressive illness? Why do these episodes always seem to take our normal a bit further along the spectrum?

In case I haven’t said this in a while, I hate this disease. I hate what it is doing to my husband, I hate what it is doing to our relationship, and honestly, I hate what it is doing to me.  I miss having a normal day with my husband where we would converse over coffee, work around the house together or maybe go out and run errands, make dinner together and then play a game or share a program on tv. That vision of life doesn’t exist anymore thanks to this diagnosis, yet I still get up and keep moving each and every day through strength and gratitude for what we do have. Our current normal is nowhere near what I expected for us in retirement but it is enough, because we are both still here and working together to make it through.

I just took a moment to think about where to go next with this thought. Do I revisit the old joke about normal being a setting on a washing machine or take a more cynical approach and say that normal flew out the window years ago. The reality may be that our normal is constant uncertainty and change. We try to lead regular lives but my husband’s diagnosis of PD continuously reminds us that we are not the ones in charge, this illness is.

Our lives are somewhat scheduled, we have meals at set times to not interfere with his meds. He exercises daily and needs time set aside around that to rest. We have developed a routine that works for us until something happens to throw us off. It may be an appointment scheduled at a difficult time, a fall or viral infection, issues with our home that need to be addressed, even one of his low energy days can disrupt our normal routines. This Parkinson’s journey is never predictable which makes it easy to see why our well defined schedule often gets tossed.

What scares me the most is that when new things happen within his diagnosis, they are at first horrendous, then move to difficult and before you know it, they have become a part of our normal. We adapt and move on. I honestly don’t know if I would recognize what we once thought of as normal anymore. No, let me take that back, we have 5 minutes of normal each and every day. It’s that time in the morning when I roll over and we cuddle before getting out of bed. It is just us holding each other in love that reminds me of why I do this. As long as I still have this little piece of normal in my life, I guess I can deal with the rest of the day being abnormally chaotic and crazy.

I was sitting in on a CarePartner zoom meeting the other day and one of the participants was really struggling with their load. I have those days too, when it seems like I can’t get ahead of the work and nothing is going well. Those are the days when I step back, take a breath, and find thankfulness for my own health and the opportunity to be here. I look at my basic needs and remember that I have a roof over my head when so many are houseless, food on my table when so many are going hungry, and a husband who loves me even though it comes with Parkinson’s Disease. I am a lucky woman and am grateful for it all.

Finding that sense of gratitude simply for life itself allows me to put things into perspective. I know a woman who lost her husband to PD a couple of years back.  She talks about how difficult her life could be, but that she wouldn’t trade a day of her journey because she was travelling it with a man she loved dearly. I understand that sentiment. I also know that it could be me who has the chronic illness and that my husband would be right here by my side taking care of me. I am grateful for the love we share that creates that bond. We are definitely together “for better or worse”.

Let me finish with something very personal, I want to say thank you to everyone who chooses to read these words. Your continuing support and comments give me a feeling of belonging and validation. You read my stories of struggles and triumphs, consider the things I say, perhaps you get encouragement from something I write. You help me get through my days without even knowing it and for that I am deeply and sincerely grateful. Thank you so much.

If this looks familiar it’s because I originally posted it a few years back. The topic of gratitude seemed appropriate today. Happy Thanksgiving to you all!

Life gets crazy and even the regular days seem to be full of tasks that demand of my time. When we finally have a calm, quiet day it can really throw me off kilter. It would seem that I could just sit down and relax but instead I find myself looking for things to do. When I should be relaxing and recharging my batteries, I find myself doing busy work fixing things that don’t really matter. I have a very difficult time shutting off that piece of me that is constantly on.

What does work is to get in the car with my husband and take a drive. We’re still doing something, but it doesn’t require much effort. We may go out for lunch or coffee, just take a break from life at home. If going out doesn’t appeal, I can escape into a good book. I can be present with my husband and still be mentally in an exotic location trying to figure out what is coming next. He also enjoys reading so it’s something we can actually do together. It’s especially nice when I build a fire in our fireplace and add a hot cup of tea to the experience.

It isn’t easy to switch my mindset from constant caregiver to loving partner. Even on the quietest of days there are things that need to be done that pull me back into that role. Deep breathing, gentle self massage, and a reality check remind me that everything is okay. I can shut it down, let go, take a break and the world will not come crashing down around us. Life may be busier tomorrow, for today I must simply be in the moment and know that even in the stillness life is all right.

As a CarePartner I am always hearing that I should take care of myself first. It’s good advice but not always useful. I would love to always do things that meet my personal requirements, but I also have a responsibility to my husband. His needs often outweigh mine and they can’t be ignored. This means that there are always going to be times when he is my priority. But, in those moments when there is a possibility that I might be able do something for me without taking away from him, I am going to grab onto it.

One example of a time that that creates conflict for us is bedtime. I like sleeping in a dark room, but we need some light in case he needs to get out of bed at night. Our compromise? A night light in the adjoining bathroom and a lighted clock with large numbers in our room. I sleep on the side of the bed away from the lights and it works pretty well. He also prefers light blankets that allow him to move around and I would sleep with a weighted blanket if I could. My compromise? I add a folded blanket to my side of the bed to give me more weight and warmth. Finally, he needs a firm mattress versus a softer one for me. We have a split king bed, two separate twin mattresses, which allow us to each get what we need.

There are other times throughout our days when our needs will collide whether it’s activities in our home, social engagements we can’t both manage, or even dietary choices. I try to remember that Parkinson’s is a shared diagnosis that requires accommodations from both of us. If we work together to meet our basic needs, then I know we can fit in opportunities for each of us to get more of what we need individually. Neither of us has to give up everything, and we can both still get through.

There are a lot of research programs happening around Parkinson’s Disease thanks to organizations like the Michael J Fox Foundation and the Parkinson’s Foundation. My husband has been enrolled in numerous studies over the years, we’re making a trip to a local university tomorrow for his annual check in with the Udall study. He’s been working with that research team for over a decade now. He may never see any advantages from the research currently happening, but at least he can know that he is sharing in finding new solutions and his contribution may be the one that leads eventually to a cure.

He has been in exercise and educational studies, gait and balance studies, had brain scans and spinal taps. He always comes away from these studies with a renewed perspective and desire to keep on fighting. In the case of the Udall study, that he will be seen for tomorrow, the lead researcher called him after he had been participating for 10 years to thank him and give him an update on what they were seeing from his particular results. He didn’t share results from the study, which is still on-going, but was able to say that they were seeing limited progression of symptoms in my husband’s data and that he was doing really well. It was so encouraging.

We are both enrolled in a study through Michael J Fox called Insight. It involves answering a questionnaire every 3 months regarding health issues. I respond as someone without PD and my husband updates them on his condition. This is a long term study and the results are available for researchers to use in different ways, it’s exciting to be supporting many different projects.

If you, or your loved one, would like to learn more about current research studies looking for participants, you can visit the “Michael J Fox Foundation for Parkinson’s Research” to learn about projects they are funding. You can find even more information on the Parkinson’s Foundation website at “Join a Study.” Don’t be afraid to step up and join the fight, we weren’t and we have never regretted it!