If I was a paid caregiver, I would have scheduled breaks and I would get in trouble for not taking them. As an unpaid CarePartner, I only take breaks when things really get crazy and I am usually already in trouble either mentally or physically. I’ve been thinking about this a lot lately, especially when I found myself craving a cigarette. I don’t smoke but was thinking that if I started it would give me an excuse to go outside by myself for a few minutes every 2-3 hours. That’s when I realized that I don’t need an excuse, I just need a boundary and a schedule.

I am not sure that it is all about being a CarePartner, I think it may also have to do with being retired and together 24 hours a day. At any rate, I need some private times somewhere in my day. I need to be able to say to my husband “I’m going outside to take a break”, and then let go of everything for a few minutes. Or, during bad weather, I need an alternate location in our home that becomes my break room. And I need to remember that breaks are not times to do chores, they are times when I can sit down with an uninterrupted cup of coffee or a glass of tea and shut out everything else.

As far as scheduling breaks, it may not be possible but I think I’ll try. I need to take a break in the morning and one in the afternoon. My morning break can be right after breakfast, I love sitting on our patio with my coffee and listening to the birds. We take a break together mid-afternoon. Perhaps I can find a few minutes of quiet time in the early evening while he is watching the evening news and before I start preparing dinner. The key is that I need to approach it with the right mindset and actually do it. Letting go may take some practice but, with time, I know I will be able to get those much-needed breaks and still be here for my husband when he needs me. 

Medications are a constant part of my husband’s treatment for PD. He takes pills every three hours and missing a dose can throw him off for the rest of the day. He carries his PD pills with him and has an app on his phone that reminds him when it is time to take them. The app shows him what the pill looks like, tells him how many to take and beeps until he shuts it off. It works well for us because I also hear the reminders and can help if he needs it.

I have a friend whose husband also has Parkinson’s alongside a whole slew of other issues. His medication schedule is much more complicated, and she has to set his pills up daily for him to take. He is also having problems with swallowing, so she mixes the meds with applesauce for him to get them down. His medication schedule interrupts her day, but she has found that taking on the responsibility of making sure he takes his pills is much better than finding them still sitting on the counter hours later. He needs his meds, she needs peace of mind, taking the lead in giving them to him meets both of their needs.

While I haven’t had to take on the responsibility of meds management, there are other tasks that I do for my husband on a regular basis. Some involve dressing, some involve personal grooming, a lot involve the day-to-day stuff like making phone calls or preparing meals. I could push back and wait for him to do these things himself, but the safest and most efficient process has simply become for me to help. Being a CarePartner impacts my life, but I can limit those impacts by accepting that there are things he can’t do anymore. Rather than worry about them not happening, I simply need to step up and shoulder those tasks for both of our sakes.

Two things have happened recently that are telling me it is time to look for a new neurologist for my husband. First, she is moving her offices. We will have to drive an additional 20 miles through city traffic for his appointments which more than doubles our travel time. We chose her originally because of the close location and now we will be going back to the same place as before. My second concern is that, following a visit to the ER, it took her office a full week to find a time when she could speak with him. I get that she is busy, but we were told to see her as soon as possible. If this is the best they can do, perhaps it’s time to look elsewhere?

My husband, on the other hand, doesn’t like change. I know that a piece of his reluctance is his disease, but he really has always been like this. A few years back, he had to change PCP, neurologist and PT all within about a 6-month period and it was extremely challenging. He likes having a connection with his providers and knowing that they are aware of his particulars and peculiarities, something that takes time to build. He is willing to stay with the current neurologist and follow her wherever she goes so that he doesn’t have to break in a new doctor.

So, here we are, on opposite sides of the fence. I am looking into options and talking to people so we can have an informed discussion. I realize that if we decide this is the correct move, finding the right doctor isn’t going to be easy. We can’t interview neurologists to make sure they are a good fit, we have to depend on what others say and hope for the best. I did check the Parkinson’s Foundation website where I found an article entitled “Finding the Right Doctor” which will help guide us through the process. They stress that the neurologist needs to be someone you are comfortable with because you are embarking on a long-term relationship. “Having a positive relationship helps keep lines of communication open and ultimately is good for your health”, referring to the person with PD. And, might I add, it’s also good for my mental health as his CarePartner.

I subscribe to WebMD’s daily newsletter that comes via email and a recent article entitled “Do Optimists Live Longer?” caught my eye. The authors based the article on a study that followed 160,000 women and found that those who were most optimistic, or as they describe it “see the potential for positive things to happen in the future”, lived 5.4% longer than their pessimistic peers. This made me wonder how it could relate to my role as a CarePartner? It’s tough to be optimistic when you are caring for someone who has a progressive illness. So, I decided to take a look at my favorite resources, the Davis Phinney and Michael J Fox websites, to see what they have to say on the topic.

Connie Carpenter Phinney is very active in her role of CarePartner and co-founder of the Davis Phinney Foundation. Her approach is to “mindfully practice optimism”. She acknowledges that negative things happen but uses them to prepare for what might be coming. For more on Connie’s technique, check out What I Have Learned as a Parkinson’s Care Partner on the Davis Phinney Foundation website.

The Michael J Fox Foundation focuses mostly on research, yet I found this great quote from Michael on the very first page “To me, hope is informed optimism.” There is no better place to get updated, and hopeful, information about PD than on the MJFF website. Looking deeper, I found a tool for CarePartners written by Lonnie Ali regarding her journey with husband Muhammed Ali. She writes of how important it is “to keep a positive attitude and sense of humor”, another great definition of optimism. To see the rest of what she has to say visit You, Your Loved One, and Parkinson’s Disease on the MJFF website.

Will it extend my life to be mindfully optimistic like Connie says or keep a positive attitude with Lonnie? Staying positive when facing the challenges of Care Partnering isn’t easy for any of us, yet I believe it is worth the effort. Even if it doesn’t extend my life, having a positive outlook will make my days now go better. Perhaps I can’t have hope for my husband’s recovery from PD but I can hold the hope that we will have a good day today. And one good day at a time is okay with me.

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.