As my  husband’s symptoms progress, my role changes. That’s just the way it is. Before his Parkinson’s diagnosis, we were both somewhat involved in local politics and engaged in community activities. I miss that work but understand that I only have so much energy to give. I still do what I can to let my opinions be known regarding local and national issues. That may be displaying signs in my yard or writing letters to the editor of our local paper. It is what I can do and allows me to remain active while still meeting my responsibilities at home.

This balancing act means that I may not be attending city meetings in person, but I can watch them on the internet to stay up on issues that matter to me. I may not be able to knock on doors or make phone calls for my favorite candidates, but I can make financial contributions and vote my conscience when the time comes. I can participate in conversations with friends and family when appropriate which gives me the chance to explore and express my views.

Being a CarePartner isn’t all I can be. It is one piece of what I do, granted the most important piece right now. There is more to my life and I need to be sure that I respect that. I try to stay involved with the outside world to the extent that I can. I like to stay informed about what is happening because it may very well impact me and my family. I remember that just as I have a responsibility to care for my husband, I also have a responsibility to care about the world we live in. Community involvement may look different, but it will always be on my to do list. Maybe just a bit further down than in the past.

My husband has a fitness tracking device that he wears on his wrist. We got it thinking it could be a good aid for tracking his workouts and were excited to see what other benefits it might offer such as a heart rate monitor or fall detection. The price was right, he was able to get a free one through his insurance program.

Unfortunately, the design of this free model is too small for my husband to manage. His hands, thanks to Parkinson’s, cannot manipulate the small screen to get to the additional programming. I often see him whacking the device just to get it to tell him what time it is, he isn’t able to access even the basics like tracking his steps. Also, this model doesn’t detect falls or place emergency calls and we aren’t sure about heart rate, it’s too complicated for us to figure out. The only good thing I can really think to say about it is that it has a long battery life. I’m not sure why he still wears it other than it’s become a habit.

Technological advances are great as long as the people making them consider the audience they are serving. My son has a tracker just like this and it works great for him, but then he is only 40 years old. I am not sure who in the government decided that this particular device would be a good fit for seniors, but I think they might want to revisit and consider something a bit more user friendly. In the meantime, we have learned that just because a tool is designed to serve a purpose, it may not serve our purpose.

I was looking at myself in the mirror this morning thinking about how I need to get a haircut which reminded me that I need to find a good hairdresser. Thinking along those lines lead me to the thought that I could use a good nail tech for those mani and pedicures, heck maybe just a personal groomer would be nice. But why stop there, I could really use a personal shopper, a housekeeper, a cook. If I had a personal assistant they could coordinate all of this for me as well as handle my finances and appointments. It would be great to have a chauffeur to drive me to those appointments and care for my car. While I’m at it, I could really use a groundskeeper to manage our property and a handyman to care for our home. Then it struck me, what I really need is my very own CarePartner!

My husband, bless him, used to do so many of these jobs for and with me. Unfortunately, now it is all my responsibility to make sure they get done for both of us. Maybe that’s why half the time I look and feel half-done. By the time I make sure he is fed, showered and dressed and our home is livable, I may or may not have any energy left for me.

The true absurdity, and what makes me laugh the most, is the fact that I think I could add all of these tasks to my already busy life and be successful at any of them. So, if the next time you see me my hair is overgrown, my clothes are wrinkled and I seem a bit frazzled you’ll understand why. But wait, relief may be on the way. I forgot to mention my personal masseuse who should be arriving any minute now … if only!

I never get to juggle one ball at a time, there is always a handful of things demanding my  attention at once. And just when I’ve got it under control and sit down for a moment I hear “before you get too comfortable, would you hand me my glasses, pills, water (whatever)”. If it isn’t a household chore or a husband needing something, it’s a text on my phone or the cat asking for something. And those are the simple daily things I deal with let alone the complications that can arise with his health concerns and Parkinson’s diagnosis.

Currently my husband is dealing with chronic back pain. He had a cortisone injection three weeks ago that hasn’t done much to relieve the pain. He is also still dealing with the residuals of his bout of vertigo and starts Physical Therapy for both his back and balance within the next month. At this same time, we are looking at a change in caregivers, we’ve been having work done on our house, I have a small garden that has been practically ignored this year, and I have upcoming medical, dental and vision appointments of my own. Lots going on and I get to oversee it all.

Life is complicated and can even be messy at times. When people ask me about hobbies I simply shake my head and smile. If I get a chance during my day to sit down and read for a few minutes that is enough. Keeping all the balls in the air at once is difficult and at times impossible, so I have learned to excuse myself when I drop one. I am not super woman and cannot do it all, nor should I try. Instead I need to be at peace with the knowledge that I am always doing my very best and let those pesky balls go where they may.

My husband has fallen twice in the past couple of weeks, once I was in the room with him and the second time I heard something and found him on the living room floor. I started to react and then stopped myself, remembering the training I had received. Instead of running over and trying to pull him up off the floor, I walked calmly over and asked him if he was okay. I was freaking out inside but he didn’t need to know that and it certainly wouldn’t have helped the situation. He was able to assess the damages done by the fall, find a safe way to roll over and get himself up, and then I helped him by bandaging a scrape and getting him some ibuprofen. It seemed like a good time to revisit the things I have been taught about falls and PD.

The first thing I was taught was not to try and stop my husband from falling unless I am sure I can do it safely. Getting between him and the floor on his way down will usually result in me falling too. Even though it goes against my helper instincts, I need to let him fall and hope for the best.

The second thing I learned is that he will need time to gather himself once he lands. I must give him the time and space to do a mental and physical check before he tries to move. Only then, once he is somewhat aware of what hurts, should he roll over and try to get up.

The third thing is that I need to stay back and let him get himself up if at all possible. I may need to bring a chair over that he can pull himself up on or perhaps assist with rolling him over, but I shouldn’t try to pull him up, I will end up on top of him myself and could hurt both of us more. If he is not able to get himself off the floor, it is time to call 911 and get trained people over to help. If he truly can’t get up there may be more damage than we are able to see, we need EMTs.

Finally, once he’s up, we need to do another check to make sure he didn’t miss anything in his initial assessment. In my husband’s case, we found skinned knees and hands from both falls. Thankfully there were no major injuries.

We have “adult-proofed” our house by getting rid of throw rugs and doing our best to eliminate slipping or tripping hazards. My husband wears good shoes that do not stick to the floor. Unfortunately, the environment is only one factor in falls and they are going to happen. Thankfully, there are wise people out there who provide good information about what to do when it does happen. For more information check out this great video called “What to do when someone falls” provided by AARP in their Family Caregiving Series on the web. It’s never too early to be prepared because we just don’t know what is coming next with PD.

My  Parkinson’s network is a very diverse and fun group of people, many of whom I probably never would have met had it not been for my husband’s diagnosis. When we get together, we always have so much to share about our daily lives and the challenges we face thanks to Parkinson’s. I don’t know if they are Democrats or Republicans, I don’t know if they have a religious affiliation or even whether they are flat Earthers. It truly doesn’t matter because what we do share is more important than any of that. We share in the journey to survive PD.

In a world that seems so shattered, we have found the value of bonding. We don’t discuss politics, we discuss pills. We don’t debate dogma, we debate interventions and treatments. We don’t compare candidates, we compare doctors and specialists. We don’t talk about controlling guns, we talk about controlling symptoms. We don’t exchange insults over opinions, we exchange love and support.

I feel closer to many of these people than I do to members of my family. We may not have similar belief systems but what we have connects us in a deeper and more significant way. I may not understand their world views and that is okay because I do understand the challenges they are facing. We all have learned to accept the differences because the similarities we share are so much stronger. And it is that shared strength that helps bring us all through.

We were having coffee with another couple from our Parkinson’s support network when the husband turned to us and asked what we do for fun these days. I was stymied. What do we do for fun? I think I joked about going out for coffee with friends and the conversation continued but the question stayed with me as we made our way home afterwards. Do we do anything just for fun anymore?

The more I thought about it, the more I realized that we do have fun, but we don’t plan specific activities to create it. As my husband’s illness has limited what we can do, we are redefining what having fun means. We may not be going on cruises or flying to exotic locations, but we are still finding pleasure in our daily lives. We enjoy each other’s company and find happiness regardless of the challenges we face. We laugh at, and more importantly, with each other over the absurdity of this disease.  

Thankfully we have mementos of past adventures and travel that we can still revisit when we want. Yes they were fun, but they were also exhausting. It’s pleasant to remember those times but they are not the memories that will keep me warm or bring me comfort after  my husband’s journey with PD ends. It will be those fun times we spent laughing together in our back yard or the cuddles we shared before getting out of bed on cold mornings that will sustain me. The next time this question comes up, I’ll know exactly what to say. We find ways to make everyday life fun, that’s what makes it worth living.                                            

I participated in a webinar on caregiving and mental wellness yesterday and one of the stories the presenter shared really struck a note with me. She had worked with a gentleman whose wife of more than 40 years was diagnosed with Parkinson’s Disease. The husband took on the role of primary caregiver. At the point he met with a therapist, he was completely burned out. He had not looked for outside help because he believed it was his duty as her husband to provide for her. If he asked for help, he would be failing in his obligations. With the therapist’s help, he was eventually able to see that he couldn’t possibly do it all himself but it took some time and a lot of work.

Caregiving indicates a one way street which is why I prefer the term CarePartnering. We are travelling this road together and in many ways are caring for each other. My husband is able to understand and accept that my health matters too, which I am very thankful for. He actually said to me last night, “if we wear you out, how will we get anything done?” This shared concern for each other helps me stay grounded and allows me to continue providing the care he needs out of love, not a sense of duty.

If I have an obligation to him, it is to make sure he is getting the best care he possibly can whether that is from me or the other people working with him. I don’t need to do it all alone, I just need to make sure it happens. There are things I do that I would rather not, but I do them with a heart full of love not as a duty. That allows me to keep on smiling through the tough tasks I get to do and step back when it really is better to let someone else take the lead. Caregiving is a job I never would have chosen to do. CarePartnering has become my way of life and I always do it with love. It makes a big difference.  

I have been writing about my journey for several years now and I wanted to step back and revisit something I probably don’t say often enough. These words reflect my life as a CarePartner and tell my story, and may not be relevant in yours. And that’s okay. The challenges I face are going to be different from yours simply because the trajectory of my husband’s disease is different from that of your loved one. Please know that answers that work in my home are only shared as suggestions and I fully recognize that just because they are helpful to me, they may not be for you.

I often repeat the saying that “when you’ve met one person with Parkinson’s, you’ve met one person with Parkinson’s” that reminds us everyone’s journey with the illness is unique based on their situation, physiology, and so many other factors. I think we also need to say “when you’ve seen one CarePartner in action, you’ve seen one CarePartner”. There are some universal challenges, things like loss and exhaustion, but our responses to the day to day work we do are as varied as the symptoms our loved one’s display.

I really appreciate having the opportunity to share my story here and hope that some of you can find it useful. At the very least, I hope it reminds you that we are all in this together and we can support each other without walking exactly the same pathway. I don’t have all the answers, I don’t even know all the questions. Then, just when I think I’m getting a handle on things, Parkinson’s presents us with a new challenge. Perhaps it’s something you face on your journey and you might have suggestions for me? Maybe through all of us sharing our stories we will be able to figure this disease out someday. Wouldn’t that be nice?

My life has gotten a bit busy and complicated lately. My husband is working through challenges with vertigo and lower back pain which has meant a lot of extra appointments. We have contractors working on our laundry room to make it more accommodating. My son is having problems with my teenage grandson and today he reached out to say he is having to put down his dog. Then, there’s the heat. It is the middle of summer so that should be expected but it always means additional stress on all of us.

When I try to face all of these challenges at once, I quickly get overwhelmed. I am working to compartmentalize or put each of these separate components of my life into their own boxes with my husband’s box, of course, being biggest. I can take them out and deal with them as needed. Choosing to take care of different issues allows me to utilize different skills and gives me a sense of some control over most of the situations. Even if I am the only one who can see the boxes, it helps me keep my sanity when I can think “not now, I’ll deal with you in a minute.”

I saw a great quote on my computer yesterday from someone named Jeremy Clarkson. It read “Multi-tasking is the ability to screw everything up simultaneously.” This is so true for me and especially applies when dealing with difficult situations. I need all my focus to properly care for my husband, respond to my son, and deal with the contractors. Using boxes to sort the different challenges gives me that necessary focus and allows me to be here for all of them when they need me. Now I just need to create a box for myself!