Before I can advocate for myself though, I need to be open to my own needs. I need to listen to my body when it tells me that I’m hungry or tired and respect those feelings. If I am under the weather, I need to own it and let my husband know that I am not going to be functioning at 100%. By sharing my feelings, I can let him know what I am able to offer on those low days and I can take care of myself while still being here for him.

My needs are not just physical, they are also emotional and involve my mental well-being. If I am feeling down, depressed or anxious, I need to recognize those feelings and seek help. It may be as simple as making a call or sending an email to my support network or I may need a professional intervention. Whatever it is, I need to be open and accept that I have needs so I can get them filled.

I am a CarePartner, not a saint. I am not invulnerable, there are times when I am not going to be at my best and that is okay. If I remember to be open and honest with myself, I can advocate for what I need to make it through each day. And finally, I need to accept that there will be days when making it through is the best I can hope for.

This thought especially applies to the jobs around our house. I know that it bothers my husband that he can’t do the things he used to do and yet they still need to be done, so I do them. But he follows me, and watches me, and directs me, which sometimes leads to conflict. I try to be patient because I know his oversight comes from the frustration of having to accept the limitations of Parkinson’s Disease. Unfortunately, patience is not always in my toolkit.

We are scheduled to walk in a 5k fundraiser for our local Parkinson’s program today. After my husband had DBS surgery, he can no longer walk long distances. For the first time, it looks like we will be doing the 1k version of the walk. I know that he will be disappointed that he cannot complete the longer walk and I am feeling guilty that I still can. Do I go ahead and walk with my friends leaving him to wait in the park? Or, do I take the shorter walk with him and then come home?

Feeling guilty about my capabilities doesn’t make his losses better. Instead, I need to be thankful that one of us can still do tasks around our home and get them done. As to the walk, I think that I will play it by ear. If he has friends he can visit, I will go ahead and do the 5k. If, on the other hand, he will be waiting alone, I will join him in the 1k and come home. There will be opportunities for me later, today I need to be there for him.

We are part of a larger group of People with Parkinson’s and their CarePartners who get together monthly to have breakfast. We have it set up so that the CarePartners sit at one table and the People with Parkinson’s sit at another so each group can talk about our challenges. It is a very good and supportive social activity for everyone.

What we have found is that the CarePartners are ready for the interactions, we are talking the moment we all arrive. Some of our PwP’s on the other hand, seem to have difficulty engaging. Understandably, a restaurant can be noisy and distracting, yet my husband will often jokingly complain that we CarePartners are too noisy and accuse us of laughing at them. They always finish their meals and conversations long before we do and are ready to leave.

I believe that this monthly outing is good for my husband, regardless of the challenges it places on him. By sitting at another table, he cannot look to me to order for him or finish his sentences. Everyone at his table shares the diagnosis and understands when someone struggles to speak loud enough or maybe drops a utensil. It is a safe gathering place for all of us as we struggle to find our way on this PD journey.

Surprisingly, this is more important for me than for my husband. I often face new situations with dread, concern about a new environment, concern about what challenges we might face and whether I will be able to deal with them. My internal struggles often set me up for more difficulty than is necessary and can flavor the entire ordeal.   

The neuro-surgeon who did my husband’s DBS surgery has offices thirty miles from us through sometimes heavy freeway traffic. My husband’s surgery was in December with follow-up visits scheduled through January. I worried about the weather, the traffic, the timing, and finally the surgery itself. I was a mess before that first appointment. We looked at the map, we talked about the route, and we allowed extra time to get there, and it went fine. I wish I could say the anxiety went away totally, but unfortunately there were still traces of it before our final appointment. Yet, we made it through.

My husband has been my best friend and sounding board for decades, PD hasn’t taken that away. If I can share some of my concerns, without triggering stress for him, it helps me resolve much of the anxiety. It also gives me the opportunity to check in with him and offer support for anxiety he may have. Just having someone listen and acknowledge our fears ahead of time really does lighten the load and reminds us both that this is a shared journey, we need to treat it as such.

Changes, even small, are not our friend. A glitch in our schedule can take us from a good day to a bad day in a moment. We recently had work done at our house which meant people coming and going all day long. The disruption was expected and yet still we struggled. I could tell that my husband was exhausted as his naps were shorter and less restful. Thank goodness they were only here for a couple of days.

I also need to make sure that things stay in place within our home. Not just the big things either, it can be a small item in the wrong spot and it causes a problem. I put my razor on the wrong shelf in the shower, he knocked it off and broke it. Not a big problem for me, but it could mean a potential fall for him. It was where it didn’t belong, my fault, because I know that my husband doesn’t handle unexpected events. I need to minimize potentially dangerous situations by remembering to put things away correctly.

Set routines and a safe environment have benefits for both of us. If we have a solid framework for our days, then the ups and downs of Parkinson’s won’t be as difficult to manage. There is much in my life over which I have little or no control; I can try to keep a schedule and a tidy house. At least then, when the unexpected happens, it won’t be my fault.  

I do a lot of on-line research and participate in support groups and webinars about PD looking for things that might make our lives easier. Then, when I come across things that have worked for others, I bring them to my husband. We talk about what I learned, and that is often where it ends.

How can I encourage him to do more? Should I? First and foremost, I need to acknowledge how much he is already doing. Simply getting through the day is a struggle for him and requires so much more energy than it does for someone without Parkinson’s Disease. He is already exercising 6 days a week, he is involved in a PD support group, he makes it to all his appointments and tries to help out around the house when he can. Does it really matter that I can’t get him to change to a Mediterranean diet?

We try to take regular walks and those have advanced to pole walking or Nordic walking in our neighborhood. He will get down on the floor daily to play with the dog and I can sometimes encourage him to lay back for a couple of minutes to stretch his spine and pecs. He eats the healthy foods I put in front of him, within limits. Rather than asking him to do more with new things I come across, I should be comfortable sharing and letting it go. I need to own the fact that this is his journey and let him take the lead.

If I want to have a good relationship with my husband, it is vital that I make time for positive encounters. Too many of our interactions have become rote with me telling him to stand up straight or walk with purpose. He is not my child, he is my husband. If I take the time to see the person beyond the illness, I relate to him on a different level with love and kindness.

We were sitting on the couch the other evening and he smiled at something I said. With tears in my eyes, I thanked him and told him how much I love his smile. It isn’t always words, sometimes it’s a look across the room or shared laughter. I may take his hand when we are walking or reach out and touch him as I walk by. Those non-verbal moments are important too. 

There are many good times in our days, and I need to recognize them. There are always going to be opportunities for me to make negative comments that focus on this disease. That is not the person I want to be, which makes it essential that I try to counteract those thoughts and feelings. Looking for and calling out positive moments helps me stay connected to positive energy within myself and makes me a kinder, better CarePartner and spouse.

Sometimes it isn’t even the care plan, it may be the interaction in the appointment itself that isn’t okay. And it may not be the doctor who isn’t understanding, it may be the nurse or others you first encounter. We had a difficult experience recently with a nurse’s aide who was refusing me admission to his appointment. To help the process along, I have written the following introduction for my husband to share with new providers. He agrees that it is a good idea.  

“I have Parkinson’s Disease. One of the symptoms of this illness is a condition called Bradyphrenia which causes my brain to process information slower, especially in stressful situations such as medical appointments. This can impact my ability to hear, understand and retain information from the doctor. My speech has also been changed by this disease which makes communication difficult. I have difficulty dressing and need help if any clothing is to come off for the examination.

My wife is my CarePartner, a vital member of my care team, and it is important that she be allowed to accompany me to appointments so she can know what is said and can support me during the appointment and in any treatment diagnosed.”

Our plan is for both of us to sign this and provide it when new appointments are made so the office has a chance to review and understand the situation. Then, on the day of the appointment, we will also bring a copy with us and present it to the receptionist. I hope it helps.

Sometimes I am faced with things that seem impossible. It may be a physical challenge that is beyond me or a mental challenge that I just don’t feel comfortable tackling. It may be something that I need to do in caring for my husband or something I need to do to take care of our home. Whichever it is, I am finding that I am more capable of getting things done than I ever thought, when I start with an open mind and positive attitude.

Included in this idea is that concept that I don’t always have to do things myself, sometimes getting a difficult task done means finding the right person to do it. Understanding what my strengths are and where they end has been difficult. My parents were very self-sufficient, especially my dad who was a master at taping and gluing things back together. I can’t recall ever having a repairman come to our house, not that we didn’t need one at times. Which leads to my hesitance to hire out tasks that I think I should be able to do. I have to remember that just because I think I can do something doesn’t mean I should try.  

Getting back to my original thought, I am finding ways to get most things done even if they do seem impossible. We needed to add some grab bars in both bathrooms. After reviewing the instructions, I decided to give it a try. I was able to find the studs, use the appropriate power tools and install the bars without destroying the bathroom walls. However, we also recently needed work done on our garage door opener. This involved ladders and working above my head. After carefully evaluating the problem, it seemed wiser to hire a professional to take care of this task. By first looking at what was really needed, I was able to make sure that both tasks were accomplished safely and in a timely manner.

I learned a new word today when, during a webinar for CarePartners, someone referred to PD as a “tripartite” illness. I have always known of the 2-edged sword we face- the physical and cognitive challenges, I guess that I didn’t realize that mood disorders, including anxiety and depression, could be a separate factor of this disease. I think that I assumed moodiness came along as a subset of the other two, but now see that it can be just as debilitating if not recognized and treated. 

So, if my husband has a “tripartite” illness then I think that what is being asked of me as a CarePartner is a “multipartite” response. I have to be ready for whatever each day brings, good or bad. He has days when he feels less energy and I may have to ramp mine up to take care of things. Then he has days when he is off-balance so I am constantly vigilant, making sure he doesn’t fall. He has days when he is quiet, days when he is more outgoing, days when things are okay and days when they aren’t. And I am present for them all.

Not knowing where his disease is going to take us, or even what today is going to look like, is challenging. I need to remember that no matter what I face as a CarePartner, it is much more difficult for my husband who is actually dealing with these changes internally. He cannot stop the tremors, the moodiness, the cloudiness, none of it is under his control. As his PD symptoms progress, I must continue to build my multipartite toolkit so that I can provide the support he needs no matter what comes next.