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.

I wanted to take a moment today to express my thanks to everyone who reads this and especially to those who respond. When I started writing I wasn’t sure what to expect. I knew I needed an outlet for some of the thoughts that were floating in my head surrounding our journey with Parkinson’s Disease. Journaling gives me a place to vent my feelings, this blog gives me a place to explore those thoughts and feelings even more.

It is a struggle to understand why my husband was chosen by this disease and hope by chronicling some of the daily challenges it might start to make some sense. It helps me immensely knowing that we are not alone on the journey, that so many others share our struggles and can identify with some of what I write about.

Always remember when reading these words that all of our journeys will be unique based on how this awful disease presents within our lives. My husband’s challenges will drive where I go and what I write about. Take what works, leave what doesn’t and when I say things you really don’t agree with, please feel free to comment or ignore them. I am not trying to define the journey we all face, simply trying to make sense of mine. Thank you so much for coming along and sharing some of the ride.

I often refer to my husband as my “Person with Parkinson’s” as if it is a package deal. I forget that he is a Person foremost and the disease is something that happened to him. Something that was totally unexpected and definitely unwanted. It is as unfair of me to think of him in those terms as it would be for him to identify me as his caregiver, nothing more. We both deserve better.

None of the symptoms he shows reflect intentional behaviors on his part. He cannot help that he is slow, he cannot help that his voice is quiet and muffled, he cannot help that he tires easily or that so much of our lives seem to revolve around his schedule. He did not ask for this disease and the changes it brings, I should never allow myself to blame him for them.

It is very much okay for me to blame this blasted disease and to be angry that it has afflicted us as long as I don’t let that anger impact our relationship because I know he is angry too. It is okay for me to shed tears over what we have lost in the privacy of my space as long as I remember where the source of that sadness lies. It is definitely okay for me to hate this disease and what it is doing to our lives because it gives me an outlet for all my negative energy. Then I can focus all my positive energy on trying to understand, support and love the man I share my life with.

My husband slipped his shoes off the other evening, and I noticed his socks. They were both white, but one had grey toes and the other didn’t. I helped him put them on that morning, how did we manage to pick mismatched socks? I asked him to look at his feet and we both burst into laughter. It was one of those silly moments, those “how on earth did we do that?” times that bring joy to our life. We got round two of laughter when he pulled another pair of socks just like them from his drawer the next morning. And no, he didn’t wear the mixed pair that day.

Some mistakes are good to learn from, some are hazardous, and some are just funny. I like the last category since our lives are so serious so much of the time that when we can find a chance to chuckle it is wonderful. I don’t mind that we are making fun of something I did because the value of laughter is so great. There are few things I can do in life that bring the same release and relief as a good belly laugh. The act of laughing strengthens my lungs, increases oxygen and blood flow to all parts of my body and improves my mood. It’s even better when I can share this with my husband.

In another mindset I might have gotten upset about the sock mix-up or even been embarrassed. Today I am just thankful that I can still find things to laugh about. Joy is not always a part of our journey with PD, isn’t it great that every once in a while, thanks to a pair of socks, it can be?

We had a lot of plans for retirement, some of which I could do alone. I remember dreaming of being able to spend an afternoon shopping, window or otherwise. I enjoy wine tasting and looked forward to visiting some of the local wineries with my husband, but he no longer drinks wine, nor does he drive so this is not an experience we can really share. It would be nice if I could go with friends and not feel like I’m committing a crime. I like to go for walks, again something we did together but can’t anymore. It would be great to have a walking group, but I feel bad at the thought of leaving him at home.

I need to get over my personal feelings of guilt and have an open conversation with my husband. Maybe there are things he would like to be doing that I am keeping him from. I am sure that he would understand my need to be more active outside our home and yet I am afraid to bring it up. Even more importantly, I need to give myself permission to have these thoughts and to find ways to act on them. It is okay for me to want to go out with friends and it can be more often than once a year. It is okay for me to have fun when he is not able to join me as long as I prioritize having fun together when he can.

Opening the doors to additional and separate activities could bring a new perspective to our relationship. I get that his needs have to be considered in any activities we do, but if we can work things out so that he is able to function without me always being part of it, then so much the better. He will be going to the gym with someone else starting in a couple of weeks, maybe this will be the start of a new direction in our lives together?