My husband has always taken good care of his teeth so we were surprised when a Speech Pathologist expressed concerns about his oral health. She said his tongue appeared to be thicker than usual and asked if he was having a tough time keeping it clean. She reminded him that in addition to brushing his teeth, he needs to brush his tongue and rinse out his cheeks. These actions happen automatically with the rest of us who don’t have PD and it just goes to show how diligent my husband has to be to make sure he is getting everything done.

I believe this goes back to the difficulties he faces when his body forgets how to do those basic or autonomic tasks and he has to think everything through one step at a time. Some steps get lost. He brushes his teeth twice a day, morning and night. He has a water pick and “blasts” his mouth out after dinner. Still he wasn’t getting it all cleared and, perhaps even more relevant, wasn’t realizing it.

Twice a week I help him shave, we call it barbershop day. We added a component where I brush his teeth and help him scrub his tongue. It is making a difference to his oral health and should be beneficial to his swallowing, I hope. This disease just keeps bringing new challenges to the table and we will keep figuring out ways to face them. In the meantime we both know he has a clean and healthy mouth.

I have been told by so many people that I need to take care of myself, put on my own oxygen mask first, fill my own cup that the words have become empty and useless. That’s why I was inspired by a comment I heard on a recent Parkinson’s Foundation CarePartner summit. The words that resonated with me were “stop thinking about self-care and instead think about maintaining a sense of self.” It’s a shift in perspective that gives me a clearer pathway through my journey as a PD CarePartner.

Sense of self refers to who I am inside, my strengths and weaknesses. It’s about my basic characteristics, my personal values and beliefs, understanding who I am. It is not about doing what makes me happy to relieve my stress, it’s more about being true to myself. It’s about recognizing life choices I am making, whether they relate to caring for my husband or myself, and being thoughtful with them. It’s about remembering that I am a person and that what I think matters too.

I don’t have a lot of time to give to hobbies but I do have time for contemplation and journaling. I can stop and think about who I was before this diagnosis and who I am now. I can explore what has happened and whether I am still that person or what changes have happened thanks to my husband’s illness. I can recognize growth and new capabilities that have made me stronger. I can look for the person I was and love the person I have become. That should enable me to respect and care for myself in the best possible way.

I found a great on-line article about Sense of Self on the Healthline website, view it here Sense of Self: What It Is and How to Build It.

Changes in the weather as fall comes on don’t bother us as much as the shorter daylight hours. Less sunlight means our home is darker, drearier. For safety reasons, my husband needs good lighting, whether it is sunlight or artificial. A bright environment helps offset his balance issues so I am constantly turning on lights. He, of course, follows behind me and turns them off to conserve electricity. It’s a constant game we play this time of the year. I like to think I’m winning.

It’s not only about safety though, short dark days are depressing for me. I like being able to get outside and get some fresh air. One of my favorite stress breakers is taking a walk in our neighborhood. Not so easy to do when it’s pouring down rain or windy. And I definitely don’t want to go out after dark. I find myself getting frustrated and cranky, not a good mindset for a CarePartner. I grumped at my husband last night over a piece of cinnamon toast, not my finest moment. I try walking around within the house but it just doesn’t provide the same relief.

I purchased light bulbs for our kitchen that claim to be like daylight and they provide some brightness. We both have lamps on our desks that are labeled “Natural Spectrum”, not sure what that means but I use mine daily. And we keep playing the on/off game with the light switches. We’re about six weeks out from the winter solstice when days will start getting longer again. I can’t wait.

My husband’s concept of where he is in relation to the world around has changed over the years. This is called a visuoperceptual deficit and is fairly common with Parkinson’s Disease. What I recently realized is that his perception of his own body has changed too. Nerve endings don’t seem to be connected to neural networks in his brain anymore. That means he doesn’t realize there’s something stuck to his fingers or face, his skin has become a stranger to him. Even when I try to clue him in he still doesn’t feel anything, but will try to clean it up. It’s a challenge he faces that I never considered before.

This is concerning because he doesn’t seem to relate to minor injuries either. He often has bruises or scratches and has no idea where they came from. Unless they are actively bleeding they don’t seem to bother him. I have to think they must hurt, but pain signals get lost on their way to receptors in his brain. Or perhaps the feelings get lost in interpretation or are too difficult to express. I’m worried this could lead to something more serious but am not sure how to address it other than calling it out whenever I can.

This is a man who has always paid close attention to how he looks. Now I find myself reminding him to wash his hands or helping him clean his nails. He seems to be more in a cerebral existence, caught up in his head rather than relating to the external world. So, I will be his monitor and do what I can to help him remember to take care of those things that have to be done to stay healthy. Our “normal” has changed again.

This is so true and something I see playing out on a daily basis. My husband’s doctors are only able to tell us what might happen, none of them can give us a clear picture of what is ahead. We get up each day wondering what new challenge might appear and what it will take to overcome it. I am learning to simply be grateful that we have those new days, many of our friends haven’t been as lucky.

When we first talked about getting in-home care a nurse came to our home to do an assessment. She asked questions about activities of daily living, things that I might need to help my husband complete. Many were things that I did without even giving it much thought. Then we got to meet with a local agency representative to create a plan of care for my husband. These two visits were clarifying as we realized that we might be further down the road in our journey than we realized.

Neither of us expected our lives to turn out the way they have yet we are still thankful to be “on the green side of the grass” as my husband puts it. What has helped me most has been keeping an open heart, an open mind and giving our best effort when faced with new challenges. No matter how difficult, we’ll find a way through. After all, that’s all we can do.

I am contacted annually by my husband’s long term care insurance plan to see if he still qualifies for services. I know it’s their standard procedure but it’s crazy! Each year I remind them that Parkinson’s is a chronic and progressive disease and that if they qualified my husband for services last year there shouldn’t be a question whether he qualifies for the coming year. The insurance company representative seems to think that maybe he has had a miraculous recovery? This is just one example of what I encounter when interacting with people who haven’t lived with someone who has Parkinson’s. They just don’t get it.

I wish they were right. I would love to wake up tomorrow and hear my husband in the kitchen making us breakfast. After breakfast we would go out for a drive, with him at the wheel of course, and maybe stop along the way for a hike. We’d be busy doing chores together in the afternoon before going out for a nice dinner. Then home for a quiet evening of games and wine. He wouldn’t need my help with anything and life would be so much simpler.

Unfortunately that is not the life we have been given. So, when someone questions the diagnosis or tries to recommend an alternative pathway, I simply tell them that my husband has a team of specialists and we will run their suggestions by them at his next appointment. When they ask how I manage the daily challenges, I tell them being grateful my husband is still here and in my life makes it easier to tackle any tasks his PD presents. Parkinson’s is a difficult road for both of us but there are many others that would be much worse. I tell them it’s okay, I’ve got this, secure in the knowledge that I actually do. And I forgive them for their ignorance.

The persona that my husband presents in public is not the person I see at home. We went out to lunch with his son a few days ago and he was able to tell the waitress what he wanted to eat but then he basically shut down. My stepson and I had a good conversation while my husband sat and watched. I did try to draw him out a couple of times but it didn’t work. He told me later that he can’t eat and talk at the same time, I understand that. I’m not sure why he couldn’t engage before the food came?

I so wish that everyone had the same opportunity I have to see my husband at his best. When we are at home alone and he is relaxed, we do talk and enjoy each other’s company. He doesn’t mind if I have to ask him to repeat himself and I remember to go slow to enable communication. When we go out, even when we have guests in, this dynamic changes. He only lets them see his challenges, not the successes that come along with them.

I know that being around others bring added stress and that stress exacerbates his symptoms. I know that strange environments bring additional complications. It frustrates me when I have to be his mouthpiece and buffer to the world. It also frustrates me when I know he has opinions but he waits for me to express them. He has always been the smartest and wisest in the room, I just wish others were able to still see him like I can.