Adjust your expectations as you are called upon to adjust your tasks.

There are always going to be times on this journey when my husband needs more care. It may be because of a fall, a viral infection, just about anything can create additional challenges for him which, of course, means additional challenges for me. The more I find myself doing for my husband, the less I am able to do for us and doing anything strictly for myself can easily go right out the window. That is when it becomes essential for me to step back and make some adjustments to our routines to ensure that everyone’s needs are met.

Thankfully, my husband understands the value of having a well rested partner because he has seen me when I am not. He knows that without my daily mini breaks, my twice weekly helpers, my yoga and my walks, I am simply not able to be as patient or kind as I need want to be. I understand that he cannot stop bad things that happen and doesn’t control the level of care necessary to sustain him at times. The fact that we both understand these things doesn’t change the fact that sometimes I am just going to have to change my routine so I can provide the care he needs in the moment.

My husband’s journey has setbacks and we have to figure out how to weather them together. I remind myself that the obstacles PD brings are temporary and that we will get back on track soon. I am honest about what I can do and what I need to do and work to balance the scales. And, I look for easy ways to make it through. If I am too busy or too tired to cook, we’ll have leftovers from the freezer and it’s okay. If he is taking a nap, so am I, the housework can wait. If there are tasks I can pass off to our caregivers, then I do it because they are here to help me as much as my husband. I adjust and accept different expectations of myself since sometimes that is the best way for us to make it through. And it is all okay.

Recognize and celebrate the good times you share.

Good times has taken on a whole new meaning as my husband’s symptoms increase. He woke and got out of bed by himself this morning, he loaded his breakfast dishes into the dishwasher, he seems well balanced and stable in his gait. This all means that I can take a breath and, maybe take a step back, since he appears to be having a good day.

I write often about the challenges we face but one of my biggest challenges is the unpredictability of this disease. It’s not knowing from one day to the next whether my husband will be up or down, needing me or not. When he doesn’t need my help as much, like today, I find myself hovering because I don’t trust that he’s okay. That inner guardian of mine that is always listening for trouble has a hard time letting go and understanding he’s doing well in this moment.

I don’t know how long this good time will last but I do know that I need to accept it and be at peace. My husband will let me know when he needs me, in the meantime I can take a break and celebrate his ability to manage today. He’s got this for now and I just need to let him be. Thank goodness for the good times.

Human touch is a vital component of healthy living for seniors especially CarePartners.

Is there anything in the world as comforting as the gentle touch of a friend or loved one? I was thinking about this the other day when I ran into a fellow CarePartner and immediately gave her a hug. It felt so good to simply connect physically with another human being. That physical connection validates who I am, reminds me that no matter what flaws I may think I have, someone else still cares for me. It justifies my existence.

I touch my husband a lot in my role of caregiver. I hope those touches are gentle, but they do not replace the contact we share that doesn’t involve his personal care. Helping him dress is not the same as holding him close while we dance. I don’t want to mistake those necessary care touches with loving touches. We both need the hand holding, the hugs, the kisses, those moments that say I remember who you are and I love you for it.

Parkinson’s is an isolating disease for both the person with the diagnosis and the people who love and care for them. I need to stay connected with my husband even more than the outside world. I miss those spontaneous hugs or kisses that happened just because. I know he has to work hard just to maintain each day so I am taking it upon myself to be the aggressor, if you would. I can be the one to reach for his hand, catch him in a hug, drop unexpected kisses because I know he would if he had the energy. And he always hugs back so I know we both get comfort in knowing we are still here and still loved.

The Parkinson’s community is larger and stronger than many of us realize and includes many wonderful and welcoming people. You never have to travel this journey alone.

I first learned this concept when I finally found the courage to reach out to a local support group. My contact was a phone call to one of the facilitators, a gentleman who had been diagnosed with Parkinson’s a few years earlier. He explained that he and his wife led a monthly group and shared some of his story while encouraging us to come to the next meeting. He assured me that we would be welcomed and that we would find good support and ongoing resources. We spoke for almost 10 minutes during that call and I understood that I had found someone who could help both of us as we faced uncertain and difficult times ahead.

When we got to the meeting, his smile was warm and welcoming as he brought us in and introduced us to his wife and then to a few others in the room. His Parkinson’s symptoms were mild yet visible; some of the others around us appeared further along in their journeys. It was obvious that we had found ourselves in the midst of a like group of people. I was so thankful that I finally gathered the courage to reach out because it was obvious these folks would have much to offer us. It actually felt like we had found a new family.

These memories are close to my heart today as this lovely man passed in his sleep last week. His contributions to the local PD community were so valuable. I hope his journey ended peacefully and that he knew how much he meant to so many of us. Rest in peace my friend and know that you helped us connect with a lifeline on this journey. You will not be forgotten. 

As your loved one’s symptoms progress, so must your skills as a CarePartner. Be mindful of when you are reaching beyond your limits.

I know I can’t do it all and really shouldn’t even try, yet each day I learn I can do more than I thought I could. The only thing that I can truly depend on with this disease is that it is going to throw new and different challenges at us as my husband’s symptoms progress. My job, in addition to figuring out how to address these new challenges, is to recognize when I am hit with something beyond my capabilities or capacities and know to reach out for help. This can also apply to those things that I can do, but just need a break from. Again, I must remember that it’s okay to let others help even with the most difficult tasks because I can’t do it all alone.

Tackling new challenges means keeping an open mind and accepting that they often happen at inopportune times. Things that happen when I don’t expect them to can mean compromising to get through until a better plan comes to light. I can still try to manage things myself, simply as a temporary measure, until a better solution comes to light. Or, I may need to step aside and let someone else take the lead so I can take care of myself in the moment understanding that is okay too.

I feel like I am rambling a bit here, but what I am trying to say is that I will continue to face challenges that come up unexpectedly in the best way I can. I will help my husband get through whatever it is, wherever we are. Then I will regroup after and decide if it is something I can do well or if I need to delegate. He is the one who taught me that just because I can do something, doesn’t mean I should. He is a wise man, I think I’ll listen to him.

Cold weather is difficult for most People with Parkinson’s to tolerate due to a condition called thermodysregulation.

My husband is cold all the time these days except at bedtime when he says our comforter is too hot and throws it off. Granted, we are in the middle of winter but he is in a warm house and dressed in a sweatshirt so how can he still complain about being chilly? Then we go to bed where he only has a sheet and comforter covering him and suddenly he’s too hot? It makes little sense until I remember that thanks to Parkinson’s Disease his internal thermostats are haywire. The medical term for this condition is thermodysregulation and can actually be life threatening if not monitored carefully.

In order to understand thermodysregulation, we first need to understand what thermoregulation looks like. Our bodies work to maintain a steady temperature so our organs will function at their best. We utilize multiple physical reactions to accomplish that. When we get overheated we sweat, when we get cold we shiver to warm up. Our blood vessels dilate or restrict and our metabolism speeds up or slows down according to whether our body is too hot or too cold. In addition, we need to be able to accurately judge when we are hot or cold and make accommodations to our environment whether it’s adding or subtracting layers of clothing. This regulation is a delicate balance that is thrown off by neurologic disorders like Parkinson’s Disease which can distort my husband’s perception of his current condition and complicate any attempts he may make to overcome it himself.

Untreated dysregulation can lead to episodes of hypo or hyper-thermia where my husband gets too cold or too hot. It might be difficult for me to recognize because the signs of both include drowsiness, fumbling hands or slurred speech which are common PD symptoms. In other words, I need to pay attention when he says he is either too hot or cold because he probably is. I will keep our home thermostat at 72 and have a few throws available in case he needs more. And, I will make peace with whatever works for him at bedtime. I can always add an extra blanket to my side after all.

To learn more about this condition and how it can affect our loved ones check out Thermoregulation: Types, how it works, and disorders on the Medical News Today website.

Most CarePartners are well aware of Bradykinesia, the physical slowness that accompanies a Parkinson’s diagnosis. It is important to understand the effects of Bradyphrenia, slowness in brain processes, too.

Those Brady twins, as I have come to think of them, are the bane of this Parkinson’s CarePartner’s existence. They work hand in hand to slow down everything my husband tries to do. It is no wonder that he feels exhausted when he is having to consciously work with his brain and body to do activities that were once automatic. He pushes back on the physical challenges by exercising. Staying active has helped him slow the progression of symptoms and gives him some semblance of control of his body. We can only hope that this activity also helps speed up the processing centers of his brain, but it’s much more difficult to gauge.

One of the questions his neurologist asks is whether he can do complicated or multi-step tasks and the answer is no. He used to be able to handle multiple challenges easily, but now has to have directions broken down into smaller steps. It isn’t that he doesn’t have the capability, it’s that his brain must work through each step and send instructions to his body before moving on. It becomes a difficult and tedious problem for both of us as I try to help him and often just make things worse.

I am learning to practice patience and step away so he can complete things in his own way and his own time. I am learning to ask single questions and wait for his response before adding to the conversation. I am learning to let him know when we need to hurry and ask if I can help or take over a particular task to get it done. I am trying to be respectful of the man who is trapped in a body that becomes more difficult for him to manage every day thanks to Mr. Parkinson and those darn Brady twins.

When introducing your loved one to a new caregiver, be sure to discuss their strengths as well as the challenges they face.

We have been dealing with changing caregivers and I have designed a spiel to share with them on that first day because what you see when you meet my husband is not necessarily what you get. His appearance can be deceiving and they need to understand his strengths and capabilities which outweigh areas where he may need help. His Parkinson’s symptoms often mask his true persona and I don’t want them to get stuck in a first impression that may not be great depending on the day and what is happening with his medications.

I like to learn about their experiences while also letting them know what they may face in our home. One thing I always ask is whether they have ever worked with someone diagnosed with Parkinson’s. This gives me the opportunity to remind them that everyone with this disease presents differently. The conversation usually starts in our kitchen and moves through the house as I explain the tasks I need help with. We finish in the living room where so we can include my husband in the discussion.

After a brief overview of what we have covered so far I ask my husband if there is anything he would like to add. If he doesn’t mention it, I will share specifics about his situation as they relate to his physical and cognitive challenges and remind the helper that he really prefers to do things for himself. I work to make sure any words I say are respectful and reflective of where he is in this moment while acknowledging the changing dynamic of his condition. I then walk away and give them a chance to figure things out. After all, he is the reason they are here and he is the one they really need to please as they figure out what this job truly entails.  

Low energy days can be a part of the Parkinson’s journey for your loved one. Don’t let them negatively impact your day.

My husband keeps a pretty set routine so when he says he doesn’t feel like participating in his exercise or PT, I know something is up. We understand that he sometimes has what are referred to as off or low energy days. There doesn’t seem to be a reason for them, they just randomly happen. When one of these hits, it is all he can do to get out of bed. He often recovers by mid-afternoon, occasionally they last the entire day. My challenge is to make sure he is okay while I continue with whatever I have planned for the day. It’s not always easy.

My emotions appear to be keyed into him. When he is off in any way, my anxiety levels go up. He is resting, recharging, and I am amping up from the stress of wondering what I can do to help him. I don’t like to see things going wrong for him without knowing why. The energy drop probably is caused by his Parkinson’s but what if it isn’t? Should I be doing something more? We actually did head out to the Emergency Room once and that turned into a bigger issue for us both. After several hours waiting, it was determined that his PD was to blame. It took him days to recover from the ER visit.

I have found that simply providing a good meal followed by a nice long nap can sometimes reset his body. In the meantime, I try to detach from my worries and move ahead with any chores or plans I have for the day. I don’t leave him alone when he’s feeling like this and may check on him a bit more. If he isn’t better on day two, I call his doctor or take him to urgent care. So far that has only happened once. They were able to determine that he had a mild viral infection and sent him home to rest. Most of the time he is able to acknowledge it as a low energy day and move on. It’s all just another part of our uncertain journey with PD.

When your loved one is first diagnosed, don’t waste time or energy asking why this happened, instead ask what you can do to do support them as they figure out how to continue living with this disease.

I used to wonder why my father and then my husband were afflicted with this disease. It’s a typical response, when bad things happen to yourself or people you love you want to know what caused it. I finally came to the realization that knowing why wouldn’t help us get through. I needed to know how we keep on going, what it takes to fight Parkinson’s, and what they might need from me as they try to live life as fully as possible. The why is something researchers can ponder, the how to move forward is what guides my daily activities and gives me purpose on this journey.

The most important thing for me to accept about this diagnosis is that he didn’t do anything intentional to bring it upon us. It is a disease, it happens, there is no blame or shame here. Was it caused by something my husband used while working in orchards as a young man? Maybe, and we can advocate for pesticides to be banned so that no one else will be exposed. It doesn’t change his trajectory. At this point in time, knowing where it came from is not going to change how his symptoms present or define his treatment plan.

It doesn’t matter why we are facing this challenge, it only matters how I respond to it. My focus needs to be on today, where we are on this journey, and what I can do to make it as good as it can be for both of us. My job as his CarePartner is to remain positive or as my husband says, “focus on what we can do, not what we can’t,” and be grateful for every moment that we have together. I have to keep moving forward with purpose and not let myself get lost wondering why it happened. That train of thought takes me nowhere.