My house isn’t as clean as it used to be, it just isn’t. I no longer have a set day for laundry, instead doing it whenever I absolutely need to and letting it go otherwise. The flowerbeds are a mess and the lawns seem to always need a trim or a cut. I am keeping up with the basics, there’s always food on the table, we make it to all our appointments and life is moving ahead.

So, what stays undone in our lives? Well, we have a healthy crop of dandelions in the yard just waiting for someone to harvest and make dandelion wine. I haven’t dusted in ages so everything has a layer of dust and I’m learning to like the gentle haze it puts on the room. I’ve started naming the dust bunnies under the bed, it’s easier than trying to clear them out.

I could worry more about all of the things I am not doing but I think I’ll focus on the things that I am doing instead. I am making sure that we have opportunities to exercise, that we eat healthy foods, that my husband’s PD needs are met and that he feels loved. I am also making sure that I find time in the day to take care of my own needs whether it is writing in my journal or escaping into a good book. I’ll get to the rest if I have time, but I’m okay if it stays undone.

I yelled at my husband yesterday and he shushed me which only made me yell more. We were working on getting the BBQ grill out of the shed. I was already stressed thinking about the difficulties of getting it cleaned up and ready for summer use. He was trying to help but the space was too tight for both of us. I yelled at him and said “if you’re not going to do it right, get out of my way and let me do it”. He shushed me and I again yelled “don’t you shush me”. It felt necessary to yell in the moment but I know I should have handled it better. Sometimes I just can’t hold it in.

Frustration is a sneaky adversary for me. It strikes best when I am tired, hungry or pushing myself beyond a limit. I was already at a heightened stress level yesterday just thinking about the task ahead, I should have taken a moment and recognized what was happening before starting. If I had talked the job over with my husband, we could have figured out the best way to proceed instead of both jumping in and creating more stress.

My husband and I often have different approaches to the same problem. We know this and yet we continue to tackle things from opposite directions. I also understand that I need to let him help or even take over whenever he safely can. Knowing all of that doesn’t keep me from getting frustrated at times, it just reminds that there will be times to express it in healthy ways and times to walk away and let it go. And to always remember that yelling at him is never the answer.

I find it so interesting when a medical professional asks me about the level of pain my husband has or how he is feeling today. This happened to us at an appointment recently and, rather than try to answer, I pointed at my husband. When his Physical Therapist realized what she had done, she turned and asked him directly. I am only an observer not the one living in body, how can I know what is happening?

Perhaps my thinking is too simplistic, after all it is his appointment, why wouldn’t his medical professional talk to him first?  And yet, I have had things work in two different ways. Either I am ignored and have to speak up to be heard, or they speak directly to me and I have to redirect the question to my husband. We all know that Parkinson’s Disease can impact his ability to communicate, isn’t the best way to evaluate that impact engaging him in a conversation?

There will always be value in sharing my perspective on where we are with my husband’s PD symptoms. I may be able to shed some light on things that he hasn’t even noticed as his disease progresses, yet he is the patient and he must be the primary on the team for as long as he possibly can. The day may come when I have to be his voice, let’s not rush into that too soon.

My daily routines need to be flexible because my husband’s routine often can’t. He needs his medication on a set schedule and that dictates meals. We work out together 6 days a week with an on-line coach and he needs his time mid-day to rest. There are appointments with his PCP, his Neurologist, his Physical Therapist, and now with a Speech Pathologist. Our days can be quite busy without any extra things I might want, or need, to do.

Case in point, the weather is getting better and the grass is growing; our lawns need to be cut. I missed the opportunity 2 days ago and now have to try to find the time around all of our other PD related stuff to sneak it in. I start to stress about it and then remember that my husband’s well-being is much more important than how tall our grass gets.

I try to be pro-active and create plans in advance but there can always be something that gets in the way of what I want to do. When scheduling conflicts arise, I need to prioritize the tasks ahead to make sure that I am doing what really matters in the grand scheme of things, not what matters in the day. The grass can wait.

We bought our house 20 years ago when we were both younger and before my husband was diagnosed with PD. Buying an older house that would need minor maintenance didn’t seem to be an issue then, we could handle most things ourselves. Fast forward twenty years and those little maintenance tasks seem momentous as my husband may not be able to help and I easily get overwhelmed.

Much of what we used to do is now being hired out but it is very difficult for me to stand back and let someone else tinker with my house. A great example came just this past week when we needed to touch up some paint on the front of the house. I asked my neighbor if she knew of anyone who did odd jobs and she volunteered herself and her husband. I agreed to hire them and we were set to go. They did a beautiful job but it was agonizing for me to stay inside and leave them alone. I wanted to be on a ladder with them helping get it done. They did a much more thorough job than I could have and it was the smartest choice even if it was not the most comfortable.

I am learning to accept my limitations, whether they are age related or not, and to recognize that even though I can do certain things, it doesn’t mean I am good at them. I also need to remember that time spent on those tasks takes me away from the more important job of being here for my husband. I am realizing that I should look for help and let those who have the skills take on those jobs. That is a better choice for me, better for my husband and better for our house.

My husband has a beautiful smile. I don’t get to see it as often anymore, thanks to his Parkinson’s Disease but when it is there it brightens my day. What I do get to see more of is the stiffness, the pain, the tremors he faces every day and it frustrates me that I cannot make it better for him. Then, he reaches out and takes my hand and all is well again.

There have been times when his physical condition has completely taken over our lives such as when he first came home from his shoulder surgery a couple of years ago. Granted, this was not PD related yet it was compounded by his diagnosis. Medications, exercises, therapy all had to be coordinated to support his shoulder recovery and his continuing PD plan. I became a giver of care as opposed to a partner in the journey and it became exhausting. The only thing that kept me going was the memory of better times and the knowledge that we would get back there again.

We worked together to get through that challenge and actually have gone through another surgery, this time Deep Brain Stimulation specifically related to his PD. It was not as intense and we were back on track almost immediately with significant benefits to his Parkinson’s symptoms. These experiences have taught me to be patient and to hold tight to every good day we have. Those warm memories and loving smiles will help get me through anything Parkinson’s can throw at us.

It seems that I have become the primary caretaker of our home and property. Once upon a time this was a shared duty but, as my husband’s communication skills decreased, it has passed entirely to me. I am the one who gets to make all the calls for repairs, I am the one who deals with the people when they come to do the repairs and, evidently, I am the one who gets blamed when things go wrong.

We recently had some work done on our gutters and there is a leak. Perhaps I am too sensitive, but having my husband point this out to me before my first cup of coffee this morning tended to irritate me. I know the gutter is leaking, I know it shouldn’t be, what am I supposed to do about it? It has been leaking in this particular spot since we moved in 20 years ago. Maybe it’s bad design on the part of the original architect, should I tear the house down and start over? I bit back my words, poured my coffee and told him we would look at it later.

I am doing my best to care for him, for our home, for our lives. There will be leaks along the way, there will be challenges I cannot deal with, there will be anger and frustration. My challenge will be to make sure that I have ways to remain calm and respond to him appropriately. I need to remember that it must be as difficult for him to watch me muddle through what were once his tasks as it is for me to do them. I will stop before angry words come out, take a breath, put on a smile and then ask his advice, “so, what should we do next, dear?”.

I have known of Parkinson’s Disease for about 30 years now. My father was diagnosed with it and I tried to help my parents as he struggled with severe cognitive and physical symptoms. I felt that desperation when, no matter what we did, the illness progressed and he passed away in just a few years.

When my husband was diagnosed with PD we were somewhat surprised but also thankful to have an answer for his tremoring. Unfortunately, as his symptoms progressed, it became so much more. We found that Parkinson’s could easily take over our lives with a strict schedule of medications, medical appointments and exercise programs. Someone once asked me why we didn’t just forget about it for a while; if only it were that easy.

Instead of forgetting about it, we are learning to live fully with it. We have accepted that Parkinson’s is going to be with us for the rest of our time together so we might as well make the best of it. My husband is open about how he is feeling and we build our days around his needs. After all, can’t we all learn to enjoy a nap after lunch? And we continue most of our activities, albeit at a slower pace, which makes us appreciate them more. We have decided that this disease will only limit us as much as we allow and we are not going to allow much!

I wrote this originally thinking about how important it is to let my husband do as many of his daily activities as he possibly can rather than stepping in to help. It has taken new meaning for me recently and I wanted to share. He has been struggling with balance issues and I have been trying to help him but realize today that I need to step back and let him work it through.

When he first mentioned the problem, I jumped in and asked one of our exercise coaches for suggestions of things he could do at home. She was able to send us an email with exercises she thought might help, he did them once because I was standing there directing him. At my insistence, his neurologist sent him to a physical therapist who gave him a series of exercises. Again, he has not really bought into them and is not doing them. In fairness to him, he does have a sore knee which may explain his hesitance to start a new routine.

It is tough for me to let things be. I have been trying to take the lead on this and I need to remember that he is the one with PD, he is the one with balance issues, not me. There may be reasons he chooses not to do the exercises that I am not aware of, I need to respect his choices and let him figure it out. It is a time for me to step back and simply love him as he works his way through.  

I am so grateful for every day that I get to share with my wonderful husband, he has brought so much joy to my life and has helped me grow as a person. Parkinson’s Disease has brought new challenges, but it cannot take away the many good things still happening or the love I feel for this man. Having said all of that, there are days when his PD makes life difficult for both of us and the struggle can cause stress in our relationship. Let me tell you about the other day.

My husband has good days and bad days and it is usually obvious which he is having. Tuesday was a bad day, he was tired, achy and just not himself. When this happens, he tends to shut down, doesn’t want to do anything even have a conversation. He will still participate in his on-line exercise groups, he has a responsibility to them, but nothing with me no matter how hard I try. It gets exhausting as I attempt to be the cheerleader and make life lighter for both of us until I finally give up and the house gets really quiet.

Then I remember that we have lost three friends from our PD group in the past year. I think about how their partners must be feeling and am suddenly aware that whatever kind of day we are having, at least we are both here and able to share it. That’s where I find my positive feeling for the day and am overcome with gratitude. Good or bad, may we have many more days to share before PD finally wins the battle.