We recently spent a few hours at the emergency room because my husband wasn’t feeling well and I was concerned he might be having a stroke. Thankfully he wasn’t, but I am happy that we went to have things checked anyway. The symptoms of a stroke are so similar to what we deal with on a daily basis, balance issues, foggy thought processes, slurred speech, weakness on one side. It could so easily have been a stroke and, had we ignored it, the results could have been devastating.

The team at the hospital was responsive and caring. The minute I mentioned the word stroke, we were pushed ahead of everyone else. He was immediately taken in for a CT scan and the ER doctor and on-site neurologist were there to speak with me. Staff kept me informed every step of the way and I felt that he was getting the care he needed. As the afternoon progressed, he started to feel a bit better so they moved from stroke protocols to see what might be going on that would make his PD symptoms spike. Blood and urine tests came back normal for him. Four hours later, when he seemed to be feeling much better, we were sent home. Since they were unable to locate a cause, we will be working his PCP and regular neurologist to see if they have any thoughts.

Trips to the ER are no fun and both of us were physically and emotionally exhausted by the time we got home. While I was relieved that it wasn’t a stroke, it was frustrating to have the staff say that they thought it was his PD acting up without offering a reason. I wish they could have told us what triggered it, but suspect that we will never really know. Perhaps this is a simply a peculiarity of his version of Parkinson’s Disease. He has good and bad PD days, this was a particularly bad one. Knowing this is a possibility won’t change my response when this happens again because it could have been something worse. PD does not protect him from other things, it just complicates them when they happen.

Just when I think I have it, something shifts and my world tilts again. It may be something here in our home, a sick pet or my husband talking a fall. It may be something local, our county politics trigger me often. It may be something on a national or global scale such as a war on the other side of the world that reinforces how fragile our societies really are. Whatever the event, my tenuous hold is shaken and it takes time to find that balance again. Time that I don’t really have while trying to maintain a healthy home environment and care for my husband.

I could shut off outside influences to minimize the distractions but that makes our world smaller. Instead, I need to work on my perspective. I am not going to be able to solve the climate crisis or world politics, but I do need to be conscious of the issues. Having knowledge and awareness encourages me to drive less, use my voice to share my concerns and vote whenever I can for people who share my values.  

A diagnosis of Parkinson’s Disease brings an uncertain future. Added to that is the fact that there are always going to be things happening that I don’t have influence over. I can’t stop my dog from aging or my husband from falling any more than I can control global issues, but I can control my responses and act calmly rather than overreact. When things get off-kilter, I can look at options I do have, choose the best one and act on it with positive intention. Life is full of quicksand opportunities, I need to know that I can find my balance anyway through conscientious, thoughtful action.

There are days when things just seem to be going wrong from the get go and it might be better just to go back to bed and start over. Unfortunately, that is not an option and so I find myself pushing through on auto-pilot to get to a place where I feel I can breathe again. I am trying to get through the bad day with the assumption that tomorrow will be better, but what if it isn’t?

Today is starting out as one of those days. We woke up late, the dog had an accident on the kitchen floor while we were getting breakfast and there is a huge pile of laundry I need to get done. I feel like crawling back into my nice warm bed and taking the day off, but the bed is already made and I don’t want to have to do it again. Instead, I will put a smile on my face and get busy so I can take part in life and not just survive. 

I have decided that “survival mode” is a state of mind and it just isn’t enough for me. Life is short and I need to be engaged in each and every day so that I don’t cheat myself out of the experiences. Walking around in survival mode works if all I want to do is get things done, but I want more than that. I want to actively participate in my life so it is not wasted. I want to be present in each and every moment, even the bad ones, because I never know where I might find a hidden treasure, a bit of joy in what can be an otherwise overwhelming time.

Need I say more? I joined the monthly Davis Phinney Care Partner Support Group this month and the topic was guilt. They started the discussion with the guilt CarePartners feel about being the healthy one in the relationship and the guilt that our partners feel about being the one with the illness. Then, we talked about the guilt we deal with when we want to take time off to escape. We talked about the guilt we feel when we do things just for ourselves. We talked about the guilt we feel when we grieve the things we have lost thanks to Parkinson’s Disease. We talked about the guilt we feel when we can’t make this reality go away and have our normal lives back.

There were suggestions to alleviate the guilty feelings but no total solution. Ideas included sharing our feelings with others, either in a support group setting or one-on-one with a friend. We were encouraged to accept that the feelings are real and know that we are not alone in feeling this way. The importance of discussing my feelings and needs with my loved one was key. We also talked some about how difficult that can be for a CarePartner when their loved one is suffering cognitive challenges. One point that the presenters really drove home was that neither of us asked for this disease and we both have our own grief and guilt over lost opportunities.

There will be a level of guilt whenever I try to do things on my own but I must keep on trying. If I remember that when I care for me, I am better able to care for him, it helps. Also, I can use technology, my cell phone and smart watch allow me to be in constant contact with my husband no matter where I am or what I am doing. When things progress and we need higher levels of support, I will try to remember to let go of any guilt I feel because I am making the right decisions on care. My goal is to always do what is best for both of us so we can live full and happy lives.

Visit the Davis Phinney Foundation website to learn more about the support group and other resources they share for CarePartners.

Accepting that I cannot care for my husband and my home all by myself has been a journey. I have always been very capable, I come from a do-it-yourself background. My father could do anything with duct tape and my mother never spent a penny on home maintenance. I suspect it drives my husband crazy at times. As I began taking over the tasks he had always done, my load became heavier and heavier. It was difficult for me to understand why I couldn’t do it all. That is when my fellow CarePartners came to the rescue.

We were all in similar situations, however most of them were smart enough to realize their limitations. One talked about having someone take care of her lawn, another spoke of having a cleaning service. A third talked about the wonderful handyman she had found who was able to do just about anything for them. It finally dawned on me that by trying to do it all myself I was only creating a more stressful and dangerous home environment. It was time for me to stop being so stubborn and start reaching out to find the help I needed.

My husband’s team consists of a lot of medical professionals and me. He needs their input and support and my help connecting all the dots. My team, on the other hand, is finally beginning to form up and consists of a landscaper, a contractor or handyman, an arborist. My husband’s team provides support for his daily living activities, my team provides support for our home. Of course, my team also consists of my family and fellow CarePartners who help keep me sane, but that is a story for another day.

Our grandson graduated from High School last week and, of course, we wanted to go to his commencement. We adjusted our daily routine so that lunch was on time, but my husband was still able to get a short nap before we needed to leave for the ceremony. His mom gave us tickets for seating on a lower level with easy access and we arrived early to get settled in before the crowd arrived. When it was over, we found our grandson in the lobby and wished him well but skipped the reception, there were too many people and we already had a plan to meet up for a congratulatory dinner the following day.

What really struck me that day was that I was the one feeling anxious. My husband was doing really well and yet I was so stressed over what might happen, I couldn’t relax and enjoy the moment. The crowd made me nervous and I was sure he was going to take a fall. I was extremely conscious of the situation and he was handling it all as if we did it every day. I had thoughts of connecting with our daughter before we left, but that was lost as all I could think of was getting out of there.

We went in to this situation with a plan and with great intentions. Where things went wrong was when I became so focused on what might happen, I lost sight of what was happening. It wasn’t that I wasn’t being respectful of the challenges he faced, but I was forgetting his capabilities. My husband was functioning well, yes there was some risk but we were able to minimize it. My overly active care meter interfered with our ability to enjoy and celebrate the day. Don’t get me wrong, we had a good time but it could have been better. In the future, I will respect his capacity and be conscious of my own unsubstantiated anxieties so they don’t get in the way.

My husband has an appointment with his neurologist this week, so he has been preparing a list of things he wants to discuss. In the early days of his diagnosis, I went to his appointments with him simply as an observer. I wanted to hear what the doctor had to say so that I could provide the right support. It was also a good time to watch the tests she did, hear about changes she was seeing and what we thought should expect next.

As the disease progressed, I realized that my input was also needed. My husband didn’t intentionally mislead the doctor, but he was always on his best behavior at appointments. It wasn’t a coincidence that we tried to schedule appointments during his “on” time with medications. She would have him walk up and down the hall, do hand and cognitive exercises and they were okay. Then, we would come home and I would watch as he struggled to hold his sandwich or stumble getting out of a chair. She wasn’t getting a full picture and I needed to help fill in the blanks.

Before we go to his next appointment, I am going to take a moment and create my own list. It will include my observations, questions and concerns. I do plan to share my list with him, not for his approval, but so that he won’t be surprised by what he hears when we are with the doctor. It is possible that many of our concerns will be similar. There may be things I bring up that he may not like, I still think they need to be discussed.

Parkinson’s Disease has been defined as a shared diagnosis between the Person with PD and their CarePartner. If we are to share in the illness, we also need to share in the treatment plan. As the primary member of his care team, I need to have a voice in the direction that care takes. I don’t intend to override him or become his voice, but instead communicate my vision of our reality. I will be participating alongside him in the appointment with our neurologist this week.

I was sitting in on a CarePartner zoom meeting the other day and one of the participants was really struggling with their load. I have those days too, when it seems like I can’t get ahead of the work and nothing is going well. Those are the days when I step back, take a breath, and find thankfulness for my own health and the opportunity to be here. I look at my basic needs and remember that I have a roof over my head when so many are houseless, food on my table when so many are going hungry, and a husband who loves me even though it comes with Parkinson’s Disease. I am a lucky woman and am grateful for it all.

Finding that sense of gratitude simply for life itself allows me to put things into perspective. I know a woman who lost her husband to PD a couple of years back.  She talks about how difficult her life could be, but that she wouldn’t trade a day of her journey because she was travelling it with a man she loved dearly. I understand that sentiment. I also know that it could be me who has the chronic illness and that my husband would be right here by my side taking care of me. I am grateful for the love we share that creates that bond. We are definitely together “for better or worse”.

Let me finish with something very personal, I want to say thank you to everyone who chooses to read these words. Your continuing support and comments give me a feeling of belonging and validation. You read my stories of struggles and triumphs, consider the things I say, perhaps you get encouragement from something I write. You help me get through my days without even knowing it and for that I am deeply and sincerely grateful. Thank you so much.

I have a hard time with interpersonal relationships. Perhaps it’s because I am more of an introvert and never really feel comfortable making that first step or, come to think of it, even the second one. I don’t find myself very interesting and can’t imagine why anyone else would. I can arrange things, like meetings, but reaching out to get together with another person one on one is a challenge. People have told me that I am quiet, reserved, even stand-offish, which might be true since I’m often the person in the room standing off to the side observing rather than participating. Maybe that is why I like to write, there are no social rules to be observed and I am not putting myself at risk of rejection. If people don’t like my words, they don’t read them and I never know. It works pretty well for me.

We have become part of a Parkinson’s community that I care deeply about. I see the other members struggling with daily activities and want to offer support but I am not sure how. As I said above, if is not easy for me to make that phone call. I am getting more comfortable with text messages, but that is really not my generation’s preferred method of connecting. Perhaps it is better than not reaching out at all and gives the other person the option to reach back when it is convenient for them?

I know that making connections is as valuable for me in my role of CarePartner as it is for the folks I connect with. If I can be a shoulder they need when times are tough then, perhaps, we can also share the easy times together. It is a good feeling to know that I have been there for someone else and able to provide some assistance. It’s even a better feeling to know that I have a fellow traveler on this journey and, even more importantly, a friend.

I came home from a recent support group meeting and looked at myself in the mirror. It was then that I realized I hadn’t combed my hair before leaving the house. Thank goodness it was a group of fellow CarePartners because they understand and forgive me if I appear frazzled. After all, they all have similar situations and know exactly what I mean when I say it’s been an interesting day (week? year?).

I find it interesting that I always try to give my husband a quick check, not that he knows it, before we go anywhere. I want to make sure he looks his best because he has always been very careful with his appearance. He may be wearing blue jeans and a sweatshirt but they need to be clean. He likes to be clean shaven and well-groomed, so I do what I can to support that. Me, on the other hand, I just like to get out the door at approximately the right time so we won’t be late. Maybe it’s with combed hair, maybe not, I guess. I often turn to him as we are headed for the car and ask if I look okay. I know he will say “sure”, no matter what I really look like. He is so kind.

Looking good takes time, being good is a constant state. I have decided that my appearance needs to be acceptable but I don’t have the energy to worry about more than that. It is more important that I spend my energy trying to be kind, open and supportive. If I have clothes on and am getting things done, then great. If I have also combed my hair and washed my face, even better still, but I am not going to stress over it. If I am happy and my husband’s needs are met, then I know I am doing what needs to be done and all is okay.