It may seem unfair, why should I have to change my style of communicating when he is the one with the disease? It’s really quite simple, I adapt because I can. PD, or the medications for it, define my husband’s abilities in many ways. In addition to slowing his speech patterns, it also takes away my husband’s ability to move many of the smaller muscles in his face. Whereas I used to be able to read his feelings, they are now hidden behind a mask. Since so much of his message was shared through facial expression, I need to be careful that I don’t apply the wrong intention to his comments when he speaks. 

As the disease progresses, everything my husband does demands unique and individual focus. Few words are exchanged during a meal or he stops eating, walking and talking is challenging, just sitting can take his full attention. Our lives can be very quiet at times.

I am learning to be a respectful communicator. If I want to have a conversation, I need to first make sure that I connect either by calling out to him or by touch. Then, I need to be in his sight range to truly know the message is being shared. I slow down and take the time to hear what he is saying and sometimes check for clarity. PD slows his processes down but it doesn’t dull them. He is still present and has valuable contributions to make. Receiving his messages may take a little more effort on my part, but it is well worth it in order to keep the lines of communication flowing.

I don’t want to be my husband’s conscience but there are times when I must be. I don’t like the role of policing his activities yet there are times when someone has to make sure he doesn’t overdo. I especially don’t want to be his mother, constantly telling him what he should and shouldn’t be doing, yet I do want to keep him safe. I know he is a grown man and should be able to make his own choices but what happens when, thanks to his diagnosis of Parkinson’s Disease, I don’t think they are in his best interest?

One great example has to do with driving. My husband developed a pretty intense tremor early in his diagnosis. It was especially bad when he got stressed and driving can be stressful at times. He found that thanks to PD, his response time was slowing down. We talked honestly about the safety issues surrounding these challenges. As a result, he began letting me drive whenever we were going out together, but was still driving himself to a local gym within our neighborhood. It was a safe compromise for a difficult choice.

There are so many things like climbing ladders, using power tools, electrical and plumbing repairs that can be especially hazardous for someone with Parkinson’s. We have conversations about what is and isn’t safe, and we always look at the symptoms of the illness, the tremors or balance challenges, rather than blame him for not being able to do these things. We usually reach agreement but there are times when I have to make a tough choice and say “no- it’s just not safe for you to do that anymore”. He may not always be happy about my decision, but he accepts it and understands that it is made with love and the best of intentions.

Acupressure uses your fingers to massage or apply pressure to identified points on your body to promote healing and is a great way to bring peace to a stressful situation. The first point that I use is called the “Hall of Impression Point” or the third eye. It is located just above and between your eyebrows. Gentle circles with the fingers of the hand can create a calming sensation. Another area to try gently massaging is the “Heavenly Gate Point” inside the upper curve of your ear. The third point that you can easily massage yourself is the “Union Valley Point” found in the webbing between your thumb and forefinger. All of these movements can easily be done anywhere and should be accompanied with my next best tip- deep breathing.

There are many different breathing techniques, these are two of my favorites and that I do often to settle myself. The first is simply to breath in through my nose for a slow count of 5, hold it for 2, and then out through my nose for 5. If this doesn’t get me to the level of calm I need, I can also try shutting one nostril while doing this exercise. The act of constricting access forces me to slow down and take deeper breaths.

I would never let these techniques take the place of my other stress reduction practices, such as my yoga, journaling or walks. There are moments, however, when I can’t strike a downward dog to recapture my zen, and that is when I use these to reconnect quickly with a calmer state of mind. These techniques help me remember that I am strong, I am capable and I am in control not matter what my husband’s PD tries to throw my way.   

The information on pressure points came from the Healthline web site and can be found at Pressure Points for Anxiety; I found the breathing techniques at Relieving Stress in the Moment by Livongo-zen.com.

I love being a member of our local support group because everyone brings something different to the table. One member of our group is an expert on medications and I have learned a lot from her regarding what my husband should and shouldn’t be taking. Another member has a good knowledge of research opportunities, we can all make use of that information. It was members of our support group who first introduced us to the Rock Steady Program and helped us get connected with a local gym.

I remember one conversation about socks. They are a constant challenge at our house. We have purchased 2 new packs only to end up sending them to Goodwill because my husband couldn’t get them on by himself. When I mentioned this problem at a meeting, several people agreed that it is tough and a couple had practical ideas including one where we use the plastic tube that comes with our daily newspaper to feed the sock on to his foot. Once the sock is on, you slip the tube back off and he is set. I am still trying to convince him to give it a try, but I suspect it would work like a charm!

Then, there are the conversations that help me better understand my role. I love hearing others talk about the difficulties of being a CarePartner and sharing skills they use to take care of themselves. I learned from the group that it is okay to feel anger and frustration as we talked about practical ways to relieve those feelings through walking, writing or yoga. One thing that I learned is that no matter how upset I get I must always remember that it is the disease at fault, not my husband. Separating my partner from the illness gives me the perspective to continue this journey in love and understanding.

Okay, I’ll admit it, I have days when I just want to run away. I don’t want to see or hear anything about PD. I don’t want the responsibility of cooking, cleaning, yardwork, laundry, cats, dogs, and yes, sometimes even husband care. I just want a day filled with me, is that selfish?

After listening to my fellow CarePartners, I am beginning to realize that it is not selfish at all and it actually is a normal response in our situations. We are all facing things we never imagined as we watch our loved ones being impacted by this illness that we are helpless to stop. So, we put on our cheerful and loving faces day after day and do our best to support them even while watching their struggles with daily tasks. It is a daunting responsibility and takes a heavy physical and emotional toll.

My husband has good and bad days. If I am able to be flexible and pick one of his good days to play hooky, he will do just fine. I will make sure he has food for the day and that he knows how to reach me in the event he has an emergency. I might even put family members on alert, just in case, then off I go. My day away will give me the break I need while letting him know that he is capable and can survive without me. And tomorrow I will be refreshed and ready to face the challenges again. And, who knows, maybe we will both find strengths we never knew we had?

Sometimes it’s the little things that count, things I wouldn’t necessarily think about but that can make a difference. The little things like chopping meat up while cooking so that it is easier for my husband to eat. Or, maybe it’s pre-buttoning his shirts so he can just pull them over his head and doesn’t have to wear t-shirts or sweatshirts all the time. Maybe it’s moving a tricky rug out of the way so he doesn’t trip on it. Maybe it’s slowing things down and really listening so that he feels heard and a part of our conversation.

I know that I can’t change everything to make life the way it was before he was diagnosed, but if there are small changes that can help us through, then I need to make them. Little things like paying for things when we are out and about so he doesn’t have to struggle with getting out his credit card or signing his name. I have become our driver so he can relax and focus on the ride. We have set our bedroom up so he has a clear shot at the bathroom should he need it during the night.

I hate to equate it to living with a young child, yet there are some similarities as we both plan to age in place. We are working together to PD-proof our lives and our home. Just as I had to adapt and child-proof my home when my son was a toddler, I take care to look at what is needed now and try to find ways to make life safer. I cannot control his illness, but I can control the environment we share and hopefully make it an easier journey for us both.

I don’t always know what is best, nor do I always know the best way to do things. This is a tough lesson to learn especially when I am trying to be a carepartner for my husband with PD. Now that I am picking up more of the chores around our home, I often know how I want things to go but don’t always agree with what my husband thinks. I try to give him opportunities to share his thoughts without getting all twisted around a plan that may or may not work for me. I am a little set in my ways and it is not easy for me to accept that he may actually have a better way of doing things.

I am learning to ask for his input before starting a task. It is much easier if we can discuss our approaches especially since they usually differ. Once I hear what he has to say, I can move forward with the best plan in the moment while still keeping other ideas in my back pocket in case things don’t work quite the way we had hoped. This saves us frustration and arguments along the way and serves to help us get more done in a timely manner.

We’re still having the fish battle at our house. I’ve tried a couple of recipes that he forced down and we are currently revisiting fish oil supplements in lieu of fresh fish. I made lasagna the other day and almost chopped a filet up with the meat but decided I didn’t want to chance it. We have 3 pounds of tilapia in our freezer that I think I may get to eat on my own.

I need to remind myself regularly that fighting this disease is my husband’s battle, not mine. I am not the one who wakes up stiff and has to face another day with PD. I am not the one who has had to give up things that I loved to do because my body and mind don’t always want to work together anymore. I am not the one who needs a medication that allows me to function but that also makes me move in unexpected ways.

I am the one who watches those struggles and wants desperately to help. I hear that exercise helps so I make sure we are connected with a program. I am there when he falters, to offer a hand or support. I hear that nutrition helps, so I try to cook healthy foods, but I need to remember that he has a right to his likes and dislikes and I should not force him to eat something no matter how good it is for him.

Anyone care to join me in a good old fish fry?

While it is impossible to predict what changes we may face in the coming years, it would be foolish to assume that life will stay the same, especially since I live with someone who has a diagnosis of Parkinson’s Disease. The symptoms of PD are unpredictable and progressive, even with the most current treatments, things are eventually going to get worse. Add to that any personal changes I face in the next 20 years, even normal aging, and I can see that this time together will be interesting.

Our personal challenges are going to change. My husband’s most prevalent symptoms are tremors, stiffness and slow responses. His muscles are not communicating well with his brain. I, on the other hand, seem to be okay physically but will I be strong enough to provide the support he may need as things progress? And, what happens if my mild forgetfulness that we joke about now isn’t just stress and develops into something more serious? How will we cope then?

We will struggle at times and we will learn to cope with whatever life throws in our way because we know change is coming. We don’t always know what form it will take, but we know that it will happen and we talk about the possibilities now. We have had the difficult conversations and have made long-term plans for care. After caring together for our mothers, we know what it can look like and are open to what we may need to do. The most important thing we have though, is our love. If we use that love and respect as a roadmap, this journey may be difficult but it will never defeat us.

We all have them, the daily list of chores or the “have to”s in our lives. I have to take care of our pets, I have to plan and cook our meals, I have to keep the clutter down to a minimum in our house. Then there is my other list, my “want to”s. I want to go shopping and just wander without a purpose, I want to find a shady seat and read, I want to have a moment of peace without worrying about anyone or anything else. When do I fit those in?

I find that I need to be careful though, because adding a “want to” to your schedule can lead to more “have to”s. I wanted to have a garden, a few tomato plants, maybe some beans and peppers. So, early this spring I actually did it, I cultivated soil, planted seeds and, sure enough, I have a garden. Now I have to water it every other day or it will die. My “want to” became one more “have to” and, while it did bring some joy, I am not sure it worked out the way I expected.

I have decided to make a “want to” list. If I prioritize and decide which things I can make happen today, would it be possible to work them into my schedule? Are they ongoing (like gardening) and, if so, will I still want to do them in the future? I currently have two times during the day that are mine, first thing after breakfast when I write and the hour after lunch while my husband naps. Perhaps I can use those opportunities to meet some of my “want to”s without adding to the “have to”s and find the balance I need in my life.