I sometimes find I’m feeling a bit sorry for myself for having to do this or that chore because it was always something my husband did before. Maybe it’s something as simple as arranging for work to be done at the house, it still adds to my already full load. But, if instead of thinking about it as something more to do, I remember why I am doing it in the first place, I can shift my perception from burden to gratitude. And that is pretty close to pleasure isn’t it? After all, in the above example, if we didn’t have a house, I wouldn’t have to take care of it. I need to be thankful for the roof over my head and move forward.

We have a cat who has been with us for 17 years. She was the first animal that we adopted together and has seen us through a lot. She has forgotten how to use her litter box and spends most of her days sleeping either in our backyard or a back bedroom. She randomly breaks into a meowing session to remind us she is still here. Whereas she was once an easy companion, she has become more work as I find myself having to change her bedding and take her outside everyday. Is she a burden? Perhaps, but she also brings me pleasure when she sits with me and purrs. I know that we won’t always have her and I need to enjoy what she offers while I can.

The cat analogy can be applied to so much of my life right now. I treasure my time with my husband even as we share this journey with Parkinson’s. There are times when I get tired or feel a bit overwhelmed. It is in those moments, when I am feeling burdened, that I need to stop, breathe and revisit the reason I am here. I picture my husband and remember that whatever burdens his diagnosis has brought to my life, it is nothing compared to the challenges he faces every day. This moment of reflection changes my approach to any task and helps me move forward to find pleasure in knowing I am doing whatever it is for both of us to make our lives the best they can possibly be.  

When we were first together, we started a tradition of checking in every week to see how things were going. Our first question was about challenges we faced over the past week and we each took turns answering it. We followed that up with what went right for each of us, perhaps how did we meet those challenges. Our final question was what challenges do you see coming in the next week?

As the years passed, out check-ins became fewer and farther apart. It wasn’t because we didn’t still want things to go well, it was simply because they were going okay and we forgot. It’s like maintenance on our house, there are things we ignore because they are working and then suddenly they are not. My husband’s diagnosis of Parkinson’s Disease was one of those things that suddenly was not.

His PD brings many challenges to our relationship, some obvious like medical appointments, others not so obvious. There are some difficult decisions that we are going to have to make in the coming years. We are re-instituting our weekly check-ins so we can discuss what is happening with both of us. Talking about challenges can be depressing so we always make sure to finish with what has gone right this week. No matter how tough the week has been, we can always be thankful for the things that did work out well and look forward to what is coming with renewed hope and love.

My husband needs to have some fairly extensive dental work done that will require about four hours in the dental chair. He has been putting this off for a while and I can understand why, but now it is scheduled and he is feeling very apprehensive about it. I will be honest, when I heard that he would be in the chair for four hours, I immediately thought about the things I could do with that time. I was looking at the opportunity for me, not the challenge for him.

With the dental appointment just a few days away, I finally took the time to talk with him about his feelings. We discussed concerns about the multiple procedures being done, our concerns about him being able to stay still since his meds will wear off while he is in the chair, and concerns about the after effects of the treatment. When I slowed down and listened, I realized that we needed more information and perhaps a new plan. I put in a call to the dentist to see about spreading this treatment out into a less traumatic format.

We are still waiting to hear from the dentist on how we can revise his plan of treatment. More importantly, I have been reminded that while my self-care matters, I need to first make sure that what we are doing is right for my husband. Then I can take my break knowing that I have done my best to help him meet his challenges to stay healthy.

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.