I don’t live in my husband’s body. I don’t know what aches and pains he has today versus yesterday. I know that he has good and bad days, I don’t always know which we are dealing with today. I don’t know when he is trying his hardest because his abilities vary from day to day. I don’t know if his meds are on or off, I don’t know which of the multiple tasks he is trying to do at a given time are the most difficult for him. I do know that he gets tired of hearing me constantly pushing him to do more.

I like to think that my “gentle reminders” are encouraging. Stand up straight dear, stretch up higher dear, bigger steps with purpose dear. But are they really? At what point does it tip over into just noise that he tunes out? There are times when I need to speak up. We go for walks in the neighborhood and he sometimes gets ahead of himself so I remind him to slow down and regain control before he falls. His feet sometimes freeze and I may give him a touch or a verbal cue. When he struggles to get out of a chair, I remind him of the sit to stand mantra- nose over toes and up he goes. It doesn’t work but it helps lighten the mood.

The thing I most need to remember is that my husband is the one living with this unpredictable illness. I need to trust that he knows where his limits are and stop trying to push them for him. He understands the value of movement in his situation better than I ever could. I need to remember that encouragement is positive but can quickly turn into negative nagging when it becomes too much. He knows what he can do, I just need to let him do it. 

There was a house fire in our neighborhood the other day. We were acquainted with the owners, having attended a Halloween party there once, but weren’t close. We didn’t know that the wife had passed away a short while ago nor that the husband was suffering from dementia. Their son was living with him. Eyewitnesses said that they both got out, this was confirmed in the newspaper reporting them as displaced. Eyewitnesses on the day told us that no one was hurt in the fire. They did lose their pets.

It was terrifying for me because it all happened as I was returning from my volunteer job at the museum. I was a mile away when I first saw the smoke, big black plumes roiling up. I couldn’t really tell where it was coming from, but knew it was close to our house. I tried to call my husband and he didn’t answer. Panic set in. I dialed again but before I could finish, my phone rang and it was him. He was okay and our house was not in danger.

The fire was big but the fire department was able to contain it to just one home. It gave me a chance to reconnect with our neighbors which gives me a thought. I really need to ask them for their phone numbers. If I hadn’t been able to get through to my husband, it would have been nice to be able to call one of them to find out what was happening. This doesn’t just apply to a fire situation, I need a back-up plan for connecting whenever he is home alone. I will be talking with several of our neighbors today to set up that emergency call line, and let them know that I am here for them too. I don’t want to wait for the next crisis, I prefer to be prepared.

When you live with someone, whatever the relationship, there will have to be negotiations and compromise. When we add Parkinson’s Disease to the mix, compromise becomes so much more important. We compromise on activities we do, adjusting timeframes to fit his “on” schedule with his meds. We revise travel plans for retirement because of the challenges PD has brought to his mobility. We adapt our home environment to better serve both of us. And we accept that this is what life will be as we do our best to still live fully every day.

My husband’s journey is a compromise between symptoms. Different treatment options can create different challenges. He was developing a debilitating tremor and decided to have Deep Brain Stimulation. The compromise, or trade-off, is that he now has balance and voice issues. It was a choice he made without knowing the full ramifications, but the tremors are under control. He could be taking more or different medications but most of them come with potential side effects, he chooses not to go there. I revise care for him to support whatever issues his disease and the treatments present.

In my role of CarePartner, I do what I can to minimize our challenges. We buy furniture that fits him, we modify our home to make life easier and safer, I adapt my schedule to be sure I am available for him when he needs me the most. I encourage him to do as much as possible for himself to maintain his personal sense of self. I accept that my life has changed with his diagnosis just as his would have changed had I been the one diagnosed with PD. We are in this together and we can adapt and grow as we figure out what comes next.

I have taken over a lot of yard work that my husband used to do. In some cases, they are tasks we would tackle together, things like trimming bushes and the spring cleaning out of weeds. Some of this I have passed on to our lawn guy, but I kept part of it because it gives me a chance to be outside and enjoy the spring/summer weather. Recently my husband suggested that it might be time to tackle the bushes out back. I usually do only 1 at a time rather than try to do them all at once. A couple of days ago we decided it was time for the forsythia.

The bush was about 8 feet high and 6 feet wide; it needed to be about half that big. I gathered my tools and started working. The next thing I know, my husband is there to help. He doesn’t have the  balance needed to trim the bush, but he can cut up branches to go in the yard waste bin. We brought a chair over for him, then I cut branches and passed them off so he could make them small enough to fit in the bin. It reminded me of past years when the roles were reversed, he would be the trimmer and I was the clean up crew. It was nice to have the company, the help and the job went much faster.

He is not going to be able to help me all the time nor would I want him to. There are times when I go outside to take a break, so I need the silence. On the bigger jobs, where he can participate safely, it is good to share the load. I know it’s difficult for him to let me take the lead, but we are figuring it out. He helps with chores and it is good for both of us to get the fresh air. It’s a winning situation for everyone.

I had a doctor’s appointment yesterday followed by a couple of hours volunteering at the museum. My husband is able to stay alone safely, yet still I was concerned about leaving him alone for most of the day. I made sure that he had something for lunch and was able to stop by the house between my appointment and my volunteer hours, however it was still stressful. I had to remind myself that it was all okay and that it is vital that I prioritize self-care ahead of caring for him so that I can continue being an effective CarePartner. It doesn’t make it any easier.

I have been having problems with my left shoulder for a while, the specialist I saw yesterday confirmed that I have post injection deltoid myositis. That’s a lot of words to say that I had a reaction to a shot and now the muscle in my arm doesn’t work. There is no treatment other than to keep using the arm, things should get better over time. This is problematic since I often need both arms when helping my husband. I am thankful to know what the problem is and I have an excuse to exercise with my husband as I am treating my own problems while working on his. My self-care and his care can work in harmony for once.

It has taken me almost a year to have the issue with my shoulder addressed. Part of that was due to delays in scheduling appointments, but most of it was my hesitance to admit that something was wrong and that it was important enough to deal with. I tend to stuff my problems behind the belief that if I ignore them they will go away. In this case, it wouldn’t have made any difference had I gone sooner for treatment but that is not always going to be the case. If I am not taking good care of me, I cannot take good care of my husband. I know it, I just need to remember to practice it.

Gratitude for my life is the thing that gets me out of bed in the morning, the realization that I have been given another day. There will be challenges and I will overcome them. I can do this, I am doing this and will keep on doing it for as long as possible. Life isn’t meant to be easy, but I hope it can be interesting and rewarding. At the end of everyday I need to be able to look back and say I did my best.

To be able to say that I did my best I need to actually do something. However doing something can look different based on how I and my husband are feeling on a particular day. It may mean I am very busy with chores or I may choose self-care in the form of light duties. Whatever it is, it must always be done with positive intention. I am thankful that most of the time I have the opportunity to decide whether to face my day with a smile or a frown. It is always about the mindset I choose to have and I want it to be positive and productive.

Being a CarePartner is a difficult job as I watch my husband’s struggles and wish I could do more to help. I am thankful that he is willing to share his journey with me and will accept my help, I hope we have many more years together. I am thankful for our home even though it means more work for me as I try to keep up with the daily chores. I am thankful for the many friends I have who are facing similar struggles and for their understanding as we all keep on each and every day. I am thankful for family who love us and support us as they can. I am especially thankful for the fact that the last words I hear before I fall asleep at night are “I love you”. That is my true reward.

I was at our monthly CarePartner get-together this past week when our conversation turned away from Parkinson’s and to a more controversial topic. It was an interesting discussion because even though our group is relatively small, we had 8 at the table, different viewpoints were represented. The thing I was most reminded of was that this disease can hit anyone at any time. It is thought of as a disease of the elderly, but that is not true. It strikes men more than women, but it appears that statistic is changing. It is now reported that approximately 40% of those diagnosed are women, 20% are under the age of 50.

There are over 10 million people worldwide diagnosed with this disease. PD crosses all races, genders, ethnicities, socio-economic groups, religions and political affiliations. When I add in family members who serve as CarePartners, it would be ridiculous to assume that we all share the same ideologies. Which is why I shouldn’t be surprised to learn that even in our small group there are disagreements about politics and social issues, yet we all stand together to support one another in this battle.

Our backgrounds have been very different but our paths have crossed now thanks to someone we love being diagnosed with Parkinson’s Disease. I don’t know why we are here, but you should know that even though I may not vote for the same politician or share your personal beliefs, just as you may not like some of the things I say or do, I will always be here to support you in whatever way I can in your personal journey as a CarePartner.

The statistics I mention come from an article I found on the PD Avengers website. It can be found here Not your Grandfather’s Parkinson’s Disease by Rebecca Miller – VISIBLE Magazine.

Over the years since my husband was diagnosed with Parkinson’s Disease, I have learned so much about this disease, but I fear I have forgotten as much as I have retained. I have stacks of books about PD and pamphlets with information about local and national resources. I know more than I ever thought I would need and yet I still find myself stumbling when facing a new or unexpected situation. Maybe it’s time to go back to the basics.

What were some of the things I learned in the beginning? I remember a workshop about helping him get out of bed and in and out of cars but it wasn’t relevant at the time. Thank goodness I saved all of the handouts. I have a copy of Every Victory Counts from the Davis Phinney Foundation and Coping and Caring, A Caregiver’s Guide to Parkinson’s Disease from the Parkinson’s Foundation. I even purchased a copy of Parkinson’s Disease for Dummies but have since given it away. I read all of these books but didn’t need the information at the time as it didn’t fit with my husband’s symptoms. I think it’s time to revisit those materials, looking specifically for what we need in our journey rather than try to absorb it all.

The thing I have held onto over the years is the knowledge that Parkinson’s Disease is going to look different for everyone who has it. That means that everyone who gets to be a CarePartner will also have a unique journey all their own. There are some basics I need to embrace, things like “don’t blame the person, blame the disease”; “don’t try to do it all yourself”; “look for and use supports within your community”; and always “put your own care first”. Hopefully, the other practical tips will be available for me when, and if, I need them.

For some great basic tips on caring for someone with Parkinson’s Disease see Practical Pointers | Parkinson’s Foundation.

My challenge today is going to be an opportunity to let go of worry about my husband’s issues with balance. I will start by looking at it as an adventure. It will be an opportunity for me to practice being alert to his movements so I can help him stay safe. Wow, what a bunch of baloney! I can be as alert as possible, but I can never know for sure when he is going to go down. Even if I am there, I can’t stop it from happening, I can only watch and hope he doesn’t hurt himself. It’s anything but an adventure as I hold my breath to make sure he is okay.

It has been an opportunity to learn that the most likely place for him to fall is in the bath or bedroom. The space is limited and he tries to turn too sharply. We both know it but that doesn’t change the fact that he sometimes forgets. The second most likely time for a fall is when he is exercising. He struggles doing an exercise called “sit to stand”. It’s a necessary move if he wants to stay mobile but it can be difficult. A lot of the time he will get all the way through the exercise segment and then fall when he is getting up from the chair for the next activity. I am always in the room with him when he is doing these and have removed as many obstacles as possible to make his fall safer but we both know it is going to happen some of the time.

 Which brings me back to the adventure and learning theme. What we have both learned about PD is that it is completely unpredictable. The adventure is in trying to look at all options and prepare for anything. As far as relieving my burden, I think accepting the inevitable rather than fighting it may be the best thing. Balance issues are going to be a part of our lives with PD and gravity always wins. The transformation I made in my thought process is the understanding that I don’t need to constantly worry about being ready for everything because that is impossible. I just need to be ready with a helping hand whenever those things happen.

I recently came across a quote attributed to Henry Kissinger that reads, “There can’t be a crisis next week, my schedule is already full.” I can identify with his words only I would amend it to say there can’t be a crisis today because I live with a full schedule. Granted the situations he was referring to were global in scale and my crises are only within my world. It doesn’t make them any less overwhelming for me.

One example from this past week. My husband got a new pair of shoes on Thursday. He insisted on getting a size bigger and they seemed a bit loose but he felt they would be okay. He sets up for exercise on Friday wearing the new shoes and before he can even get started takes a fall. He hit his head and shoulder on the way down, no bruises yet. He missed exercising and I spent the rest of the day watching over him to make sure he was okay. I am not sure it was because of the shoes but they are going back and we are getting the smaller size.

It doesn’t take much to switch a normal day into crisis mode. A fall, a choking incident, or even just an off day with his meds. Things outside our PD world that need my attention fall away and I am focused fully on caring for my husband. Our reality is that these things will happen and I just need to remember that I can handle them. No, let me rephrase that, we can handle them. Fighting PD is a team effort for us and I rely on my husband to tell me when he needs additional help as much as he relies on me to provide it. Getting back to Mr. Kissinger’s remark, Parkinson’s Disease- bring it on! We’re crisis ready here.