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.

My husband has exercise classes, physical therapy, speech therapy, dental and vision appointments, when do I have time to schedule them all? And what about my appointments? I need to see my doctor, I need to get my teeth cleaned and my eyes checked, but when? The car is overdue for an oil change, it’s time to have our furnace serviced, trees and shrubs outside need to be trimmed? The cat needs to go to the vet for her annual check-up? You have got to be kidding!

We have multiple calendars in our house, our primary one hangs on the kitchen wall. I update it regularly and it helps keep me sane. My husband and I both have calendars on our cell phones that I work to keep updated too. It’s an ongoing challenge. Just this past week I finally had to tell him that I can’t do any more right now, and then I feel the guilt of not doing enough. We both have to accept that until something changes, we are fully booked for the next month at least.

I honestly don’t know what the answer is. I prioritize activities he does to fight back against his diagnosis. I know he must do these things to stay healthy, yet there also needs to be time for other necessary chores. My “to do” list gets longer and becomes my “not now” list. As long as these extra tasks are on list somewhere, I guess that’s better than forgetting them altogether. Maybe they’ll get scheduled somewhere sometime, until then they just need to wait.

There are days when the only way for me to find a positive outlook is to start with a negative one. I know this appears to contradict what I have said in other writings. I am usually more of an optimist than a pessimist, but being a PD CarePartner has made me a realist. Loving and caring for someone with Parkinson’s can be difficult and depressing. Accepting the challenges this brings, and the feelings that come with them, is simply a normal day for me. That doesn’t have to mean it’s all bad.

Staying positive on a daily basis often means adjusting my thought process. If I expect things to go haywire, then I am pleasurably surprised when they go right. Maybe it’s best to be prepared for the worst rather that always go around seeking a beautiful, sunshiny, happy day. I’d rather have an unexpectedly pleasant outcome that brings joy than an unanticipated bad one that disappoints.

Don’t get me wrong, I am grateful for every day that I get to spend with my wonderful husband. I understand that things are going to happen that we can’t anticipate or control because of this disease. Some days are going to be easier than others and that’s come to be our normal. So, for me, it has become a coping mechanism to expect life to be a bear and when things don’t go in that direction, all is good.

My husband shared an article that was covered in his Speak Out class today about Care Partnering that he thought I might find interesting. It was good information, but not anything I hadn’t seen or lived before. He knows I write about my journey and thought it would perhaps be material for a future blog. It did inspire me to write this so I guess he was right. Thank you sweetheart.

I get lots of regular emails from many different Parkinson’s organizations. It’s great staying informed but at the same time it also reminds me that we are mired in this never ending battle. Some days I would just like to open my computer and not see the latest PD news or be invited to the next webinar. It would be nice to be able to pretend, even if just for a little while, that Parkinson’s didn’t exist. While I appreciate the updates and support, it can become overwhelming at times.

I love my husband and want him to keep sharing things he thinks I might like, it’s okay that I don’t try to follow them all. I know I could disenroll (is that a word?) from the websites I do follow, but then I might miss something important. Instead I have decided not to enroll in anything more. I know that there are plenty of resources out there when I need them, I just don’t need any more right now.