My husband is an absolutely amazing man, something I may not tell him enough. I watch him struggle daily with PD and wonder how he does it. I wish I could be as strong. On the other hand, that doesn’t mean that he can’t also be a bonehead at times. This disease brings cognitive and physical issues that are outside of his control, and I try hard not to get upset with him about those things. However, when he does things that have nothing to do with his diagnosis and that would have made me angry before Parkinson’s, it’s okay for me to get mad. I first need to make sure that I am differentiating between the two and then, if he is doing something boneheaded, I let him know how I feel. 

Everything he does these days is flavored by PD so it can be difficult to know when I need to be angry with him rather than the disease. However, it is not Mr. Parkinson’s whiskers in the sink after shaving. It is not his disease that leaves dishes in the sink or waits until I have settled down to take a break and then asks me for something. It is him who conveniently forgets he has PD and tries to do something we both know he shouldn’t. These may seem like minor indiscretions, but when added to the pile any of them can be the one thing that breaks me. In those moments, it is okay for me to say something before it becomes too much.

Saying something in anger still needs to be positive for both of us. This is difficult because opening those doors can lead to floodgates. I have to work to temper my upset with humor or love. Sometimes it helps if I show him what he did that bothers me, other times I simply have to give him a look. These are the times when I let down my protective filters. We both let the disease go and become us again, warts and all. Perhaps I need to learn to treasure these moments when there is no PD, just us and it is very real. That just doesn’t happen enough these days.

I can hear it now, my husband saying, “wait a minute, what makes you think I don’t get angry and frustrated?” My answer to him is that when you have those feelings, you are allowed to express them. When I get them, I am expected to blame it all on the disease and get over myself. I am not allowed to show anger around him because it is not his fault, so I get to stuff all those feelings away for another day. I am reminded of the statement, “it’s not the person, it’s the disease.” Well, sometimes it is this person, his CarePartner, feeling the anger. Living in denial is not necessarily a healthy way to deal with negative emotions.

I get so frustrated when it takes him longer to get ready to go out that I often just choose to stay home instead. I get angry when he doesn’t engage in things with me, even normal conversations have become a challenge. It upsets me when I don’t get to do things because he doesn’t think he wants to or it sounds like it would be too difficult. It really bothers me when we spend money on mobility aids that he won’t use. There are times when I turn around and he is there and I just want to scream because I need to do something, and he is in the way. It makes me crazy to feel all these mixed emotions and then have to stuff them away.

My husband reads all my blogs before they are posted and I can imagine that this one may be difficult for him to understand. I love him so much and yet still these negative feelings exist some place in my mind. I have learned to accept our situation, set aside my feelings for the most part, and save my expressions of frustration and anger for my writing. It is good to have this outlet, otherwise I don’t know what I would do with all the negative energy. I can’t let it drive my days so I will keep writing about it and remember to focus on the positives. Look to what is going right, not what is going wrong as I strive to keep calm and CarePartner on.

My husband’s diagnosis of Parkinson’s Disease brought some new mantras into our home. We now live with the understanding that “It takes twice as long to get half as much done.” and “The hurried-er I go, the behind-er I get.” I found my mantra the other day on the internet. It read “I had my patience tested. It was negative.” Trying to be patient in the midst of all of the changes we are going through is one of the most challenging aspects of being a CarePartner for me. Let me give you an example.

My husband has always been the one who arrived early to every meeting whereas I would cruise in just on time. Since his diagnosis, things have completely flip-flopped. He now has to depend on me to get him places on time and it sometimes doesn’t work in our PD dominated world. We were getting ready to go out the other day and I was in my usual mode of running just on time, when my husband reminded me of a saying, “the hurried-er I go, the behind-er I get.” As he struggled with his coat, I stood there wondering how I could speed things along. We finally got out the door but were late to everything for the rest of the day. I was put off schedule in that one moment and couldn’t ever get back on track. It finally hit me, I didn’t need for him to hurry, I needed to plan better and find patience. We seriously need twice as long to get ready to go as we did before his symptoms progressed to this point.

My husband can easily spend more time getting ready for a chore than it takes to do the chore itself. Perhaps that is why I find myself, as CarePartner, wanting to step in and do more of those things every day. Instead I stop, take a breath, and remember that the little chores are important because they support his abilities and sense of being. He needs to continue doing things for himself and for us, and I need to be patient so that he can have the time and space to complete them. As he says, “It takes twice as long to do half as much with PD”. I just need to practice patience as I stand back and let him get things done. PD is his challenge, patience is mine. Thank goodness he’s doing a much better job in his battle than me.

Spring is finally arriving and that always means new things for me to do. I love to be outdoors, just not necessarily gardening. I also have windows that need cleaning, a patio and driveway that need power washing, all necessary tasks when preparing our home for the coming season. It makes me tired just thinking about it, let alone getting any of it done. My role of CarePartner keeps me pretty busy regardless of the season, something I really need to keep in mind as I start trying to take on more. Perhaps that’s why, when faced with the choice between buying a new garden hoe and hiring someone to take care of it for me, I chose the latter.

I won’t give it all away. The bigger jobs like spring clean-up of the flower beds and mulching in the front of my house would be best done by a professional. I’m also having someone else cut my lawns. I will take care of the back garden beds myself, perhaps grow a few vegetables and flowers. I have a solid plan for what I can do and what I need to let go of this year; I just hope the plan works.

The advantage of having someone helping out on a regular basis is that if at any time I realize I have taken on more than I can handle, I can simply ask them to take over. This also works as a safety plan in case something happens to me or my husband and we need an assist in an emergency. Having an established relationship with helpers is essential in times of crisis. This spring I am looking carefully at what I think I can and want to manage myself. I’ll let the professionals take care of the rest.

I love Cirque du Soleil shows, we have seen several and they are always great fun. This year, for my birthday month, I purchased tickets for their travelling show 6 months in advance to be sure we got to go. It was a wonderful gift to me. I was telling my husband about it when the reality set in. This was going to be a challenge.

First let me say that I don’t like to drive in city traffic and these shows are very popular. Lots of people means lots of cars and parking garages to deal with. We would be in an auditorium setting we have only visited once or twice before, and it has been years. What barriers might exist in getting my husband to his seat? The time frame was not good, the show starts at 1 pm which is in the middle of napping. Added to that is the fact that it is on the first day of daylight-saving time, how would that change in schedule impact us both? The “what if’s” of things that could go wrong kept growing in size until I was on the verge of canceling when common sense and reason finally returned.

We are not the only people dealing with disabilities who attend events at this space. I looked on-line and made a couple of calls to learn about their accommodations. I invited my son and his wife to join us at the show and they happily agreed to drive. I had a conversation with my husband around what our schedule might need to look like on the day of the show and we put a plan in place.

I would like to say that all of this planning alleviated my stress but I would be lying. I was awake the night before the show wondering what could happen and envisioning the worst. I am happy, however, to report that the event went off without a hitch. We found parking within 50 feet of the ADA entrance. We waited there just a few minutes before a wheelchair attendant arrived to take us to our seats. After the show, another person was there to help us back to our car. The afternoon turned out to be so much better than I had expected and we both had a great time.

I regret the time I spent anticipating what could go wrong and am so thankful that I didn’t let my worries overwhelm me. This experience shows me that we can still live life fully if I let go of my protectiveness and anticipation anxiety. Life can go on, it can even be great if I just relax and let it.

Misdiagnosis, missed diagnosis, premature diagnosis, just some of the things I have witnessed in our journey with PD. We personally have experience with misdiagnosis. My husband’s tremor was labelled Familial Essential Tremor for years before he was referred to a neurologist who realized it was actually Parkinson’s. In my father’s case, his diagnosis was missed. His family doctor apologized to him for not seeing the signs, as he put it, at least 10 years earlier. And, we have many friends who are prematurely diagnosed with PD only to later learn that they actually have something else, and often more serious. There are several neurological disorders such as Multiple System Atrophy that are similar in symptomology but different in progression and treatment.

How did a neurologist finally decide that my husband had Parkinson’s Disease? There is no definitive bloodwork that can be done. There is a test called a DaTscan, similar to an MRI, that looks at the brain’s dopamine system, but it is expensive and normally only used to verify a diagnosis. In my husband’s case, the doctor looked at him, watched him walk and then told him he had PD. To confirm the diagnosis, he was prescribed carbidopa-levodopa. The doctor said that if the medicine worked, we would know for sure he had the disease.

There are many exciting research projects out there looking at everything from early detection through facial cues or sense of smell to genetic biomarkers that indicate propensity for a PD diagnosis. Until we can better understand the brain, however, the best tool is still going to be that personal, one-to-one visit with a neurologist, preferably a Movement Disorder Specialist, who is trained in recognizing the symptoms. We can’t blame the doctors if they are confused and miss or mis-diagnose because they are only working with the tools they have available at this time. Let’s hope it gets better soon.

Visit How Parkinson’s Disease Is Diagnosed | Johns Hopkins Medicine to learn more about what is currently being done. Visit the Michael J Fox Foundation and initiate a search for research into early diagnosis to see what may be coming soon.

I used to work with families, particularly families whose children were having difficulties and had become involved in the local Juvenile court system. One piece of advice that I shared often was something I learned as a parent. How we see our children has a serious impact on how they see themselves and can shape their behaviors. I am in no way saying that my husband has entered his second childhood and needs to be treated as such, but what I am trying to say is that this same principle can apply. How I see my husband changes how I treat him and can change how he decides to act in his battle with Parkinson’s Disease.

My husband still showers and gets dressed mostly on his own. Would it be easier and faster if I were there to wash his back and feet? Certainly. I could also be there to help him dry off afterwards. Then I would shave him and brush his teeth and hair for him. Would any of this make a difference in how he looks? That is doubtful. It could, however, make him feel less capable, less competent, more dependent on me. My husband says that he needs to do these things for himself to maintain his skills; I think it also helps him maintain his dignity and independence. The day may come when I have to do more, I don’t want to go there until we absolutely have to.

If I see him as an invalid and treat him as such, he will accept that and become an invalid. I speak from experience; I saw this with my parents. If I see my husband as capable and encourage him to keep on trying, I believe that he will feel positive reinforcement and work harder to fight this disease. I learned long ago that giving too much help can lead to a sense of helplessness. Instead, I strive to provide just the right amount of support and encouragement so my husband can feel he has a partner in this journey, not a nursemaid. I want him to know that I believe he is capable, competent and amazing. Especially, I want him to feel and know that I love him and am proud to be walking alongside him during what is probably the most difficult period of his life.

There are a group of us in my PD network who get together for breakfast once a month. It’s an unstructured gathering, no topics other than being a CarePartner for someone with PD which is always the elephant at the table. I sit at one end of the room with my fellow Partners, our People with Parkinson’s are at the other end so we can speak freely about challenges without upsetting anyone. What always amazes me is how different this disease presents in each individual afflicted, yet how similar all of our responses are when caring for them.

There is such a wide spectrum of symptoms in Parkinsonism and this small group represents many of them. Some of our loved ones have developed mobility issues and arrive sporting canes, walkers, even wheelchairs. Some have cognitive challenges including hallucinations and delusions. My husband has to deal with speech and balance issues. No matter how the disease presents, what all my CarePartnering friends express primarily is a sense of loss. It is actually a progression of little losses that continue taking away more of our loved ones each day. I see it as an impossible battle with an unrelenting enemy and all I can do is keep on fighting, hoping for the best. 

I am so lucky to be a part of this amazing group as we share our journeys with CarePartnering. I don’t know how I would make it through without them. I have found answers to questions about Parkinson’s Disease, about being a caregiver, about the household problems we all get to take over when our husbands are no longer able to do them. Most importantly, I am learning about self-care. The breakfasts themselves are positive and therapeutic as we come together to share stories of our lives. Our table rings with laughter, we leave the tears and fears at home. Belonging to this wonderful community of supportive women is the best tool I have in my CarePartnering kit, and I am so thankful for them every day. 

This group formed when a fellow CarePartner and I decided we needed a time to just get together and talk. The next month we invited two more to join us and then two more, I think you get the idea. If you don’t currently have a group, start your own. You won’t be sorry!

Many of the challenges we face are difficult to discuss, things like toileting and personal grooming. How do we tell friends and family that our person with PD may need to be accompanied to the bathroom and may need assistance cleaning themselves? Or that they need to be mindful of his balance and help him out of chairs? How do I help them understand that his verbal communication has been impacted by his illness, but he is still there and needs to interact regardless of how difficult his speech may be to understand. One of our biggest issues is that my husband has difficulty walking distances or simply getting out of the house. How do I explain these things to those who have never experienced them? What help do I really need to get through the day?

Thankfully, we have a supportive group of friends within the PD network and I can tell them anything. They get it because they live it alongside me. They don’t, however, have the ability to assist me because they are so busy surviving themselves. Talking with them, however, is extremely helpful because the conversations we have helps me recognize my challenges. Once I have verbalized the challenge, it is so much easier to brainstorm solutions.

One thing that I came across recently was the idea of writing my challenges down. Defining specifically what needs to be done allows me to figure out where I really need help. I use this list to create another one, a “help wanted” list. It might include covering chores, or it might be something bigger like exercising with my husband to give me a break. Then, when I am talking with friends or family and they ask how they can help, I just pull out my list and actually ask for something tangible. Difficult conversations about challenges would become more useful and create positive outcomes. I’ll be writing my list and posting it on my phone later today, ready for when that opportunity arises.

It’s my Birth-month! For those of you who aren’t familiar with this concept, the more birthdays I have the more I feel the need to celebrate. One day, even one week just isn’t enough so I have decided to make it a monthlong party. Why not? After all I am getting older and feeling it. I can and do fight aging, but ultimately, I must accept and live with this fact so I might as well make it fun.

Our celebrations have changed. What used to be weekends away at different surprise locations have become carefully orchestrated daytrips within reasonable driving distance. What might once have been a day at a spa is now an hour getting my feet massaged and my nails trimmed by a registered nurse. What might once have been dinner out and a Broadway show is, well maybe that hasn’t changed so much other than we skip the meal and do a matinee so we’re home by nap time.   

It is so easy to get caught up in being a CarePartner that I forget I have a life too. Doing different things and having fun is good for both of us. It changes up our routine and creates new challenges that expand our lives. I owe it to myself to remember my milestones and celebrate them. Sharing those times with my husband gives me the chance to take some of the emphasis off his diagnosis for a while. I hope that sharing it with you helps us all remember that we are so much more than CarePartners. Happy Birth-month to me!