Anticipatory grief was the first step for me. When I learned that my husband had Parkinson’s Disease, I was struck with the fear of what it would mean and grief for what it would take from us. I didn’t really know what was coming, I just knew it was going to be different from what we had planned. That expectation of loss lived with me for several years festering within me, fed by the uncertainty of where this journey would take us.

Then things actually started to change and we were faced with real losses. Granted they were small at first, but they brought with them actual grief for those things we could no longer do or for the things I saw PD taking away from my husband. Every task that he passed on to me was another little loss for him and it hurt to see what was happening to the man I loved.

We became part of a local PD community which was very supportive but with those connections came the opportunity for more grief. I watch my friends struggle as they deal with their challenges and grieve for what this disease is doing to them and to the ones they love. I share in their grief when their loved ones pass, the ultimate loss in this journey.

I don’t often stop to put words to this component of my life because it can be too difficult to consider. When I do take the time, it reminds me of the courage that we all must have to face whether we are the one living with this disease or their CarePartner. While it is true that I grieve for what we have lost, I also recognize those things I have found that keep me going on. I am stronger and much more resilient than I ever expected and those qualities, along with the love we share, will be what sustains me on the difficult journey ahead.

I recently enrolled in an on-line course through one of our larger PD organizations that was advertised as being just for CarePartners. I was excited because they so seldom do things just for us, their work is typically focused on the Person with the disease, not those caring for them. Finally, someone was recognizing the need for training on how we can better care for ourselves and live healthier lives as a CarePartner.

I knew that the classes were going to be time consuming, I didn’t realize that much of that time would be spent covering the basics about dealing with the symptoms of PD. It turned out to be so much more about how I should be caring for my husband rather than tips on how I should be caring for me. I made it through three sessions before realizing that the material being presented wasn’t new or really helpful. I reached out to the training team to share my concerns and their response was, if this isn’t a good fit for you perhaps you should quit. So I did.

My life as a CarePartner keeps me busy whether it is caring for my husband or our house. It was a challenge finding the time to add the classes so from that aspect it has been a relief to quit. I am disappointed about the content and yet this experience has taught me another lesson. It’s okay to stop doing those things that do not my life easier or better. No, beyond okay, it’s important that I recognize and quit doing things that add more stress without adding benefit. I’m not being a quitter, I’m being self-aware and that is an essential skill if I am going to take good care of my husband and, oh yes, me.

My husband bought me a day-to-day inspirational calendar for Christmas. I love seeing the thoughts and advice from others and found today’s entry to be particularly appropriate. It was attributed to Ashleigh Brilliant and reads “It’s not easy taking my problems one at a time when they refuse to get in line.” Wow, I think this person must live in our house because they couldn’t have written truer words. Being a CarePartner usually means being confronted with multiple challenges and the only guide I have as to which I tackle first is which will impact my husband the most.

I’m somewhat ashamed to admit that it’s mid-afternoon and my breakfast dishes are still in the kitchen sink because unloading and reloading the dishwasher was not the priority yet. I did help my husband shower and dress, we did our weekly grocery shopping, we exercised for an hour. I fixed a leaking faucet in our master bath and am successfully getting a blog written for tomorrow. The dishes come next, unless something else pops up sooner.

It would be so nice if every challenge I face came with a rating that told me where to place it on my to-do list. Unfortunately, even if I had the list, it’s the unexpected things that will always throw me off. My husband told me this morning that he was having a “low-energy” day which should have told me that I would have a “low-accomplishment” day. The one item that always has to stay at the top of my list is for me to “be grateful for today and rejoice in what I do complete without lamenting over what I don’t.” I’m doing my best to keep things going and that is all I can do. And, it really is all okay.

I’ve heard all the good advice regarding how to ask for help, but it is still very difficult for me. Even when people offer help, I hear myself turning them down. Am I afraid to let others see that I can’t handle it all? It’s funny because I expect my husband to be able to ask me for help and get upset when he doesn’t, yet it’s something I can’t do for myself?

My first hurdle seems to be actually admitting that I need help. I come from a long line of capable people, it’s hard to accept that there may be a task I can’t do. Then I have to get my head around the fact that it is okay to ask and that maybe I deserve to receive help. I don’t have to be able to do it all myself, I can let others carry some of the load and it doesn’t take away from who I am or who I want to be. In fact, accepting assistance often makes it easier for me to achieve my goals and be a better, happier person.

So, I will revisit some of the things I have heard from the experts. I will make a list of tasks that I could use help with and keep it handy. Then, when someone says “what can I do?”, I will have something useful to offer. If I open up some and let others in to help, it will strengthen my bonds with friends and family and will give us all more opportunities to share. If I learn to accept their help maybe I will be able to return the favor one of these days.

We recently started having someone come in to help with my husband’s care one afternoon a week. It wasn’t that there were things I couldn’t do for him because I do those things all the other days, it was more that I needed a break from doing them. I needed a few hours when I wasn’t on duty so that I could take care of things that had nothing to do with his diagnosis of PD. I needed someone else to be the ear listening for his call for help, someone else to get him up and moving, someone else to make him a snack or keep him company. I needed some “me” time.

Last week during our designated care time, I was in my office area viewing a webinar when I heard a knock on the door. It was our helper asking about leaving early, she said my husband had told her to check with me but that he was okay with her going since she had all of her work done. I felt like I had been set up so I said yes, especially since it was only about 30 minutes. After she left, I began composing this blog in my mind.   

My husband has an expectation that when she is here, she needs to stay busy. He doesn’t quite get that it’s okay if it appears she’s just sitting with him because then it doesn’t have to be me. There is someone available to provide for his needs and keep him safe. I can’t come up with enough things for her to do to fill 4 hours, but I can definitely find things for me to do if I have 4 hours of free time. How can I help him understand that concept without hurting his feelings? How can I make him see my need for a few hours of uninterrupted “me” time, is it too much to ask for?

My husband is a workhorse when it comes to exercise which can be worrisome because he will push through with moves when maybe he shouldn’t. He is also ingenious at finding workarounds so he can continue to get his necessary workouts done in a safer way. He totally gets the value of movement and is motivated to take part in classes and realizes that, as his symptoms fluctuate, his abilities change. He accepts this reality and, when necessary, adapts the environment and the training to meet him where he is physically on any given day.

It’s still a two edged sword. Exercise is an essential component of his treatment plan and it also creates his greatest risk of injury. Over 50% of his falls happened when exercising and, more specifically, when he does a procedure called sit to stands. His exercise coach and his physical therapist both tell him that he needs to do this particular move up to 30 times a day, unfortunately that’s more than he can manage. He has learned to accept that he can safely do 10 during an exercise session and works to add more later in the day.  

On the recommendation of a local occupational therapist, we moved all of the furniture out of a spare bedroom and created a workout space for my husband. He has a small desk where he can put his computer for zoom classes and we have folding chairs for seated portions of the programs. All of his equipment is stored in a rolling cart that can move about the room or hide away in safe spots in corners. He still falls occasionally but there are fewer obstacles and less things to hit on the way down. Movement matters but safety matters even more, thankfully he understands and respects the need for both.

My husband took a fall a month ago and we are still in the recovery process. It didn’t appear to be a major fall; he took a tumble doing his daily exercises landing on his left side hip and butt. He continued with the class and seemed to be doing somewhat okay that day. Two days later we were at urgent care where he was referred to a lab for x-rays. The images confirmed that there was no bone or joint damage, just soft tissue. The bruising increased daily and by the end of week one he had a huge purple blotch from his left butt cheek down the back of his leg to his knee and even into his upper calf. Needless to say, standing was difficult, sitting even more so. The only relief the doctor suggested was icing it and taking acetaminophen.

He couldn’t exercise, he couldn’t ride in a car, somedays he struggled just to bend his leg to get out of bed. My role of helper increased as I tried to find ways to assist and also things that might alleviate his discomfort. I know he was struggling because he actually stayed on the OTC pain meds for over a week, something he hates to do.

This one fall has limited his activities for a month now. He is still not back to fully exercising. He can get in and out of the car and ride short distances, so we are able to get out of the house some. Life is slowly getting back to a somewhat normal state however everytime something like this happens, it seems to take him down further than he is able to recover. His set point changes to a lower level than where he was before. I hope that isn’t true with this incident, only time will tell.

We struggle with this daily. I find things that I think will make our lives easier and give my husband more independence and he refuses to use them. He has a lovely walker that sits in a corner of the living room. We have a shower stool that I use to shave my legs, he hasn’t even tried it out to see if it is the right height. I suggested buying adaptive silverware and he finally agreed to use a soup spoon with meals to minimize spills. He has a cane that he uses when we go out but never in the house regardless of how unsteady he is feeling.

I’m not sure why this bothers me so much nor why this is difficult for him unless it has to do with accepting emotionally that he needs additional help. I should be happy that he wants to be independent and support him in his choices to try to do things without assistance. I want to be here for him in whatever capacity that means. However, when there is something that will make both of our lives just a little bit easier and safer it would be nice if he would consider adding it to his toolbox.

My thought is “I want to give you tools that help you do things better on your own”, his thought seems to be “I am doing okay, leave me be”. Maybe this is a battle I don’t need to take on. My job might be simply to do the research, introduce the tools and have them available. Then I must trust that he knows his physical and emotional condition better than I do and accept that he will seek the help on offer when it is appropriate for him.

Good days, bad days, on periods, off periods, changes in capacity and capabilities, the unpredictability of caring for my husband can sap all the positive energy right out of me. It’s the never knowing for sure what is coming next that keeps me on alert all the time. He can be fine one minute and then struggling the next, there isn’t a discernable pattern as to what his needs will be on any given day so how am I supposed to stay ready? I am, quite simply, learning to roll with the tides.

At one point I thought I needed to just plan for the worst and then I wouldn’t be disappointed if it happened, but we can’t live our lives that way. I do need to consider the worst case scenarios but then set them aside and hope for the best. It helps to remember that we are on a long trajectory with this disease. We’ve been fighting it for 13 years and I hope we get at least that many more.

Staying positive for me means finding the good in each day. I look for what is going right and laugh (whenever possible) at what isn’t. We made it out of bed this morning, a definite positive, and we have a somewhat plan for the day. Who knows whether it will go well or go haywire, we’ll make it through. I smile to myself with the understanding that I got this CarePartner thing covered for one more day. What more can I ask for?

Things break, dust accumulates, life happens around me and it never seems to let up. No matter where I look in my house, I can find something that needs my attention whether it’s the dust bunnies under the bed, the leaking faucet in the bathroom or the broken slat I just found on our futon. I can never get it all done because there is always something more. And, of course, there is caring for my husband which always has to come first. That may explain why it often feels like I am always working on stuff and never getting anything done.

The thing is, I live in an older house and things are going to break so it is impossible to actually stay ahead of everything. I could push more, spend more of my days trying to get to it all, but to what end? I would simply frustrate and exhaust myself, because I know there will always be something more to do. It is a never ending cycle that I need to break free of. My chores are scheduled around my husband’s care which isn’t always predictable, he needs my help when he needs it regardless of what else I might be working on. Breaks I take to care for him don’t meant the task goes away, they do often mean it doesn’t get done. I need to understand that this state of constant disorder in my life is okay.

I find that using time restraints sometimes works. If I tell myself that I am going to spend 20 minutes working on tasks and share that thought with my husband, I can usually get at least 1 thing done. I am also learning to prioritize my time and accept that there will always be things that don’t get done. Most of all I have learned that at the end of my day I need to be able to say “enough” and congratulate myself for what I have accomplished, not worry about what is left to do. That’ll be a task for tomorrow.