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.

Sometimes it’s a safety issue for my husband, sometimes it’s a safety issue for me or simply something that I just don’t want to do. Whatever the reason I do, on occasion, find myself telling him no. If it’s appropriate, I talk through my reasoning with him to help him understand the why but there are times when it is just a flat no, I’m not doing that with you or for you.

It doesn’t happen very often and I am working on not feeling guilty when it does. I try to help him figure out if there might be an alternative option so he can still have his needs fulfilled. An example of one time when I have started to say no is with his exercise regime. I love working out with him but can’t join him for an hour 6 days a week, I just don’t have the time. The compromise we are working on is that I will join him for 3 of the sessions, be close by for 2 more that are seated, and have someone else take him to the gym for his final workout of the week. He can be safe and I can get other chores done while he is occupied.

I missed an opportunity this past weekend when I should have said no and didn’t and it almost ended up badly. My husband doesn’t always recognize or acknowledge the hazards in some activities. If I think it is a potential problem, I need to step up and say no. It may make him mad in the moment, but so be it. I would much rather have him upset with me for saying no than have to make another trip to urgent care for a fall. He’ll get over the anger, he may not recover from the injury. I have the right to say no, I’ll use it when I need to so we can both be safe. 

I had an appointment with my therapist yesterday and her homework assignment for me was to look more closely at my feelings around the loss of control in my life. In the time we have been working together she has heard me talk about how difficult some days are when it seems like everything I do has a PD slant. I have spoken wither about the things we have had to give up and the difficult time I have watching my husband struggle with his symptoms. She asked me the question, “how much of your concern is the actual loss and how much of this relates to your loss of control?”   

I know she’s right. I am, and always have been, somewhat of a control freak. I like to plan things out, I make lists, I don’t do things unless I can do them well. I like to be the one making the decisions because it means that I can control the outcomes. I used to joke that I was put on this earth to learn patience but I think now that I may be here to learn the art of letting go. It’s really tough to trust that things will go right if I am not in charge.

PD has taken over the leading role in our lives however there is one thing it will never control and that is my personal reaction to everything that is happening. I am figuring out how to stop my immediate reactions which are often negative, think things through, and then respond positively. I am finding ways to trust in what may come rather than attempt to stop it from coming. I am working on adding the skill of letting go when things spin out of my control. What is going to happen will happen, I just need to find peace with it and understand that it can still be okay.

It happened again yesterday; my husband asked me to help him with something and before I could get to him, he was already doing it. I get that he needs to do things for himself whenever he can but wish that he would respect the fact that once he asks me for help it may take me a moment to get there. Just as I need to be patient with him, I would ask that he give me the same consideration.

If only my husband would understand that I am not always able to jump when he calls for help. It may be that I am in another room, or it may be that my body isn’t as quick as it used to be, whatever the reason I am doing my best to respond. I will be there for him, but it may have to be on my timeline, not his. I won’t leave him hanging, it’s just that I need to shift gears from whatever I am doing to whatever he needs. If it is a true emergency I’ll be there immediately, otherwise it may take just a moment.

When he asks me for help then goes ahead anyway without me, it makes me feel unappreciated and yes, even angry at times. I try not to take it personally, but instead understand that he is used to doing things by himself and having to wait for someone else is not normal for him. I want him to trust that I will always be there for him as soon as possible, it may take me a minute though. If he can remember to show me a little patience, I will do the same for him, and both of us can have our needs met in a timely manner.

I know that I have addressed this before but think it is a topic well worth repeating. There are times when I find myself worrying about our future and all the challenges that may bring thanks to my husband’s diagnosis of Parkinson’s Disease. It can be terrifying to consider whether I am going to be able to manage. What if I develop health issues too?  Who will be here for us then? How will we get through? I take a breath and realize that I am borrowing worries from tomorrow. I have enough on my plate today, I need to step back and let tomorrow worry for itself.

Letting go of “what if” isn’t easy but works best when I match it up against “what is”. If I redirect my thoughts from what could go wrong tomorrow to what is going right today, it reminds me of all the good happening in our lives now. I have so much to be grateful for starting with the basics like having a roof over my head and food on my table. I have good and supportive family and friends who bring love and joy to my life. I have a husband who, in spite of a debilitating illness, is still here with me. I really do have a good life.

So, my advice to myself is rather than get caught up in worrying about what might happen tomorrow, I will do my best to appreciate what I have today. That starts by recognizing and taking the time to be grateful for everything that is going well. Then, I know I will find the strength to face whatever goes wrong when it arrives tomorrow.

Wow, things happen at our house that really are upsetting at times, and I do my best to remain calm, but it can be tough. I was having one of those days recently and then that “one more thing” happened that totally put me over the edge. I was at my wit’s end and the only safe response seemed to be to scream to release the energy rather like a teapot. I realized that while screaming might be my best solution, it would probably just serve to increase my husband’s stress levels so I held it in. As soon as I could get away, I went for a short drive where I was able to express myself safely. My fellow drivers might have wondered what the noise was but it certainly gave me the opportunity to release a lot of pent-up energy. By the time I finished, I was no longer yelling but instead found myself singing along with the radio. I arrived back at the house refreshed and ready to start again.

I have several tricks that I have developed that work as stress breakers. One is, of course, writing. If I can express my frustration in words, I can alleviate much of the power it holds over me. Another release is reading. When life gets too overwhelming I escape into a good book. I find that lighter cozy mysteries are great at diverting my attention away from whatever is bothering me here at home. When the book doesn’t work, I move to video games, anything that requires my entire focus. Another easy escape for me is to go outside. Pulling weeds is a great way to let go of my worries. The fresh air clears out my residue anger or frustration and often provides a different perspective.

When life gets too crazy, it is essential that I find ways to take care of me. If that means running away for a few minutes into a good book, outside to my garden, or even further for a drive to yell it out, then so be it. Better I should scream at the car than scream at my husband for things he cannot control. My mental health matters, I will make sure to keep it as a priority on my journey.

I came across an article in our local paper this morning regarding the 5 pillars of human movement. It was written by a personal trainer, and she spoke of exercises she feels we all need to do to support our bodies and remain healthy. It was interesting to me because it really outlined what Parkinson’s Disease has taken away from my husband and reminded me to be more understanding.

The pillars that she mentioned were locomotion, level changes, pulling, pushing and rotation. These 5 abilities are the basis of human movement and are all equally essential functions. Locomotion refers to the ability to move your body through space, something my husband’s diagnosis of PD has slowed to a snail’s pace. Level changes, which include getting up from a bed or chair, are becoming more difficult for him every day. Pulling, so he can bring things to himself, and pushing, to make them go away, is also becoming increasingly challenging. And the final pillar, physical rotation, is extremely limited. The physical challenges his body faces just to survive must be overwhelming for him and I need to remember and respect that.

This article spoke to the my personal situation because my husband presents primarily with physical symptoms. I did get to experience cognitive and mental challenges when my father was on his journey with PD. I believe that the concept of not underestimating the challenge can apply in that arena too. The thing is, whether my loved ones are facing physical, mental, or emotional challenges I can never truly comprehend what they are going through. Instead I must always do my best to give them the respect and consideration they deserve because the road they are on is always going to be so much more difficult than mine.

We are starting in-home care today. It will be only a few hours, one afternoon a week. It seemed that it was the right time to make the move so that I could back off a bit on some of the work I am doing and so that my husband could have a new person to interact with on a regular basis. We talked about it and spoke with friends who were already doing it. We worked together to make a plan and a list of things that this person could do that would be helpful. We found a local agency that had capacity and completed the intake. Now comes the hardest part, actually allowing someone else in.

My husband has a difficult time asking me for help so I am concerned that he won’t want a stranger helping him either. We have discussed this and he assures me that it will work, we’ll see. I struggle letting go of control and trusting that someone else will be able to do my tasks correctly. I am reminding myself that it’s time to give some of it up and that whatever they do, however they do it, I will appreciate their assistance. I need to remember that this change is as much for me to have extra time as it is for my husband to have someone who has been properly trained to care for him.  

My husband’s Parkinson’s Disease diagnosis brings with it a regular schedule with lots of structure. That doesn’t mean that we have to remain stuck in patterns that are no longer working effectively. Making changes like having in-home care are big and should not be taken lightly but with proper planning and collaboration, we can manage them. It has been a struggle and we both have had to work through some difficult emotions but I know it will be worth it in the long run. It’s just another sideroad in the journey we share as life continues on.

My husband does a lot of things for himself and I am happy to encourage him as long as he is able to do them safely. We don’t always agree on what that looks like so for many activities I stand close by in case he needs help, on others I am hands-on to make sure he is okay. I know that on some days he is more capable than others so being close and ready to respond gives him appropriate support regardless of his level of need.

One issue that often comes up is what I think he should do versus what he thinks he can do. It must be awful to have to accept help on tasks that he has always done by himself. It must be especially difficult when his body automatically starts the task before he realizes that it may be more than he can handle. I watch him struggle trying to get off the couch or out of the car. Some days it works, others not so much. I would prefer that he let me help him, he prefers doing it himself even if it takes him multiple tries, uses up a lot of his energy, and can put him in danger of a fall.

In those moments, I need to remember to respect his opinion and defer to him whenever possible. I also need to remember that his safety depends on my  responsiveness. This disease and his symptoms are unpredictable and vary by the day, even by the time of day. It’s tough to know where the line for help is when the line is constantly moving. So, I will stay close, help where he lets me, and know that I am doing my best as his CarePartner. In the end it is always going to be a shared responsibility as we both do what we can to make sure he is safe in whatever situation we find ourselves facing.