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.

When my husband was diagnosed, we both went through a time when we were trying to figure out what this really meant. A lot of that first year involved questioning the doctors and looking for answers that weren’t available. Accepting that my husband actually had this disease was difficult for me because I had seen what it did to my father and I wasn’t seeing any of that now. I finally came to realize that is the nature of this illness, no two people with it will look the same. That was the beginning of understanding what was happening to us.

I didn’t realize that accepting his diagnosis was just the first step on this journey. So many things are changing as his symptoms progress, we have opportunities for new acceptance on an almost daily basis. He has had to accept limitations to his physical abilities thanks to his tremors and stiffness and I had to accept a shift in tasks to compensate. He had to accept that it was time to retire when his voice and tremor got in the way of him doing his job. I had to accept that it was time for me to retire when it wasn’t safe for him to be home alone all day. Then we had to accept that he shouldn’t be driving anymore, and I had to accept the role of chauffeur. Those are just a few of the more extreme examples.

With each step of this journey there have been challenges that impact how we live our lives. We wake up every morning wondering will this be a good day? And we accept whatever Parkinson’s has decided to give us. We accept, but that doesn’t mean we don’t fight back. Exercises, PT, Speech, and continuing the battle because acceptance is one thing, allowing it to slow us down, that’s just not going to happen.  

One of the things that I miss are the long detailed conversations we used to have. Sometimes about intense topics, other times nonsensical stories we created just for fun. We bantered so much at work we earned a nickname for it. Whether silly or serious, this was an important component of what brought us together as a couple in the first place and Parkinson’s Disease has put a real damper on it.

Talking is tiring for my husband and conversations move much slower these days. Thanks to his diagnosis, he has to stop to process my comments, then figure out his responses and remind himself how to get them from his brain to his mouth and out into the world. It’s a real challenge when what was once the simplest of tasks becomes so monumental. His PD messes with his autonomic systems and nothing happens automatically anymore.

We were at a meeting with his Speech and Language Pathologist this past week and she told us to keep trying to converse. The skills my husband learns in his sessions with her are meant to transfer into real world situations. He needs to practice talking with me so that he can talk with strangers when he goes out. She suggested that we try for one dialogue daily and not at meal time, because he needs to focus on swallowing at that time. It’ll be interesting to see if we can bring back some of the crazy conversations of the past, but I’m willing to give it a try. Who knows, it might remind us of better times and give us even more to talk about. 

Other than a myriad of appointments, our daily lives have become somewhat routine. It’s a necessary process that helps keep my husband’s Parkinson’s symptoms on track, yet I find it also becomes a bit boring. An unyielding medication and exercise schedule defines our days. Our meals are at set times usually followed by a rest or quiet period. There is no room for spontaneity and even planned outings are based on appropriate times when he should be feeling his best.

There is not a lot of fun to be found in the challenges of Parkinson’s Disease so we try to joke whenever we can. A few examples are mimicking turning off the faucet that is his runny nose, singing songs while I help him in the shower, dancing with him during exercise class, or eating dinner by candlelight so he can blow out the candles to build up his lung strength. We’ve renamed our daily tasks like helping in the bathroom to include “tidy up”, or “white glove service”. When helping him get seated at a table, I am “scootching him in”, and one of my favorites is “unexpected cuddles”. In the midst of assisting him I come in for a quick hug or drop a kiss on his forehead.

The tasks I am getting to help with these days are quite a change for both of us. I want to do whatever I can to help him maintain his dignity and normalize the activities. If calling them by silly names or finding the fun wherever makes it easier then so be it. Anything to lighten the mood and make life with PD more tolerable for both of us.

My most difficult days are those when I feel like everything is out of control and I can’t see a way forward. It may be that something has happened to the house, it may be that something has happened to my husband, whatever it is the event has pushed me to the edge. Somedays it doesn’t take too much. For example, we learned that we are going to have to change our Medicare Advantage Plans yesterday. That definitely threw me out of whack.

After sleeping on this news, I have started compiling a list of other tasks that need doing as well. Feeling in control sometimes means looking at everything you are facing. Starting with a list gives me the opportunity to recognize the enormity of the tasks and to prioritize. I have broken things down into those that I need to do immediately and those that can wait for a while. It’s my start on creating an organized plan of action for taking back control of a portion of my life.

The insurance issue is a top priority but we have two months to sort it out. Laundry and garbage are obviously today tasks. It will be encouraging to see things getting done as I cross them off the list. Some will come back, but at least I can see my current accomplishments and it helps me understand why other things need to be put off. Just having this all written down organizes my thoughts and helps me feel like I’ve taken back some control. It may be a temporary breather, even that is helpful in this world of personal aging and caring for someone with Parkinson’s Disease.

My husband just started a new round of Physical Therapy with a new therapist. This is the fourth time he has sought treatment from a PT for lower back pain in the past few years. The first time I was all in, willing to help him figure it out. The second time, a year or so later, I was a bit hesitant, not sure whether it would be beneficial. The third time, I told him that he was on his own. I drove him to the appointments but that was my total involvement. He is back at it for a fourth time now and, for some reason, it makes me angry so I really have to step back from the process. I don’t understand where the anger comes from, I just know that even being in the room when he is doing his homework is difficult for me and he doesn’t need to see that.

Perhaps my frustration comes from knowing we have done all of this before with little or no success. He seemed to be making progress with his last therapist. Then he saw another therapist at her office who told him that he didn’t need to do all of the exercises if it was too much and things fell apart. I understand that it is hard work for him. I also understand that he is doing a lot of other stuff, but these exercises are supposed to be specific to the area of concern and they need to be a priority if they are going to make a difference.

I really want to be supportive of my husband in his journey but don’t seem to be able to set aside my feelings on this. I am letting him take this on for himself and wherever it goes, that will be fine. It would be nice to think he will get some relief from the therapy, but I have doubts based on his history with PT. So, I will step back and leave it alone to keep peace in our home and to protect my mental health. Maybe this will be the magic time that it actually helps. 

There are times when my husband’s schedule and mine simply clash. Life as a CarePartner is busy and there never seems to be enough hours in the day. Meeting both of our needs often means compromise for one or the other of us, it seems that it is usually me. My husband might have a different take on that though. Making sure we both get what we need, as opposed to what we may want, also means prioritizing and making choices. I may not always make the right ones but I don’t make them lightly.

I made the choice to not attend a physical therapy appointment with him the other day and have been regretting it ever since. He was meeting with a new therapist and undergoing testing. It might have been useful for me to be there, but I wasn’t. I had good reasons not to go, phone calls I really needed to make, yet I feel like I have let him down. I will be present for his next appointment with this therapist and that is going to have to be enough.

It’s important for me to recognize needs versus wants when deciding who or what comes first. We differ in food preferences, that is a want, but making sure our meal schedule fits his medication schedule, that’s a need. Exercise time for me is a want, for him it’s a need. That sometimes applies to nap time too. Choosing to miss his appointment the other day may not have met his needs in the moment, but it was the right choice for me and sometimes that is all I can do.