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!

I finally heard someone on a Parkinson’s Foundation webinar confirm this statement recently. Granted he was speaking to a group of CarePartners, but I have always secretly felt this way. My husband is actively engaged in the fight daily, I am only able to sit on the sidelines and watch as this disease takes away the man I love and changes our lives forever. No matter how hard I try to spin it all in a positive manner, our dreams for retirement are gone and our perception of “quality of life” has changed drastically.

Instead of talking about places we still want to go, we reminisce about places we visited together. Funds we created for fun excursions are now being spent on necessary changes to make our home more livable. Instead of planning to go across the country for a vacation, we plan going across town to have lunch. Occasional drives in the country have replaced hikes along mountain trails. Date nights are streaming a movie in our living room instead of going out for dinner and a movie. We used to love going to wineries for live music and dancing, those evenings are long gone. Most days we spend at home taking care of chores unless my husband has a medical appointment. Our biggest social outing is a weekly trip to the grocery store. I have had to adjust to these losses as my husband’s illness progresses.

So, is it fair to say that his diagnosis has been more difficult for me than it has for him? I definitely think so, but what can I do about this? I accept what is happening, I adapt, I modify my expectations, I live this new life as fully as I can. I look for the happiness in each day, I am grateful for what we do still have, I sometimes live in denial about what might be coming down the road. I understand that within the losses, there have also been gains. I am healthier, more resilient, and stronger now than before PD became a constant in our lives. I have found a whole new group of friends who support me in the daily struggles. Most of all, I reserve blame and anger for the unlucky situation that brought this disease into our lives in the first place. He didn’t ask for it, I definitely didn’t ask for it, but here it is and we will get through it together!

I recently came across a video done by Jeff Foxworthy written to honor the work done by family caregivers. You can find his original on the AARP YouTube channel or by googling “You might be a caregiver if”. With much respect and gratitude for his comments, I modified his idea just a little bit and came up with the following list of 10 things that let me know I am a Parkinson’s Disease CarePartner. After all, I’d much rather laugh at the absurdity of our situation than cry at the inevitability of what might be coming next.

I know I am a PD CarePartner when…

1. I get excited finding flushable wipes on sale at the grocery store.
2. I know the name of every laxative product on the market and have most of them in my medicine cabinet.
3. The contacts list on my phone includes a primary care physician, neurosurgeon, physical therapist, occupational therapist, movement disorder specialist, speech and language pathologist, orthopedic specialist, and a mental health therapist. (Only one of them is for me, can you guess which one?)
4. I always make sure my husband is showered, shaved and dressed appropriately before I run a comb through my hair and throw on yesterday’s outfit.
5. I know the fastest route to the ER, the closest Urgent Care facility and the closest wine shop just in case.
6. I can replace a broken light fixture, fix a leaky faucet, clean gutters, and repair a hole in the wall without breaking a sweat.
7. In addition to childproofing my home for the grandkids, I have age-proofed it for myself and my husband.
8. I know a dozen different ways to say “HUH?” and most of them don’t include naughty words.
9. I have a pole in my bedroom and it’s not for dancing.
10. I wake every day full of gratitude for the opportunity to spend it caring for my wonderful husband who has this disease. It’s a tough role but I wouldn’t walk away from it for anything in the world!

To view Jeff’s original video, click here You might be a caregiver if….

My husband and I were driving to the grocery store the other day when it started to rain. I went to turn on the wipers and had to choose what speed I wanted them to operate from 7 different settings. I just wanted my windshield clean and this was one too many decisions for me that day. I turned the knob to whatever setting and started complaining loudly about missing the day when it was just on or off. My husband sat there chuckling at me as I continued to grouch about how things have gotten more complicated in an effort to make life easier.

I feel inundated with decisions in our daily life. What’s for breakfast, lunch, dinner? What do you want to wear today? What’s on our agenda, what are we doing today? Is the house too hot/cold? When should I pay that bill? Is it time to order refills on our meds? Do I have time to do the laundry or run the dishwasher? And a few time sensitive questions, do we need to change our Medicare program? When should I winterproof the house? What are we going to do for the holidays? Then I get hit with whether I want the wipers to run intermittently, slow, or fast, and I just don’t have any patience left to deal with it.

I am learning to walk away from some of these decisions. My husband wears whatever comes out of the closet first, no thought put into it. As to what to eat, I let him make the choice whenever possible and then fall back on easy solutions like leftovers from dinner. Some decisions I simply put off until I have time. There are a lot of choices in the world today, I think my best decision is going to be to simplify as many of them as possible, like the wipers, so I have the energy to focus on the really important ones.