The biggest difference for me involves the trajectory of care. When I was raising a toddler, I knew that he was maturing and would reach the point where he didn’t need my help anymore. When you are a CarePartner for someone with a chronic illness, the opposite is true. My husband will need more help as his condition progresses and we may reach the point where my help is not enough and we need to bring in additional support.

With my son, I learned to use less words, with my husband I am often using more as I try to communicate effectively. In both cases it is my job to make our environment safer, child proofing with my son and fall prevention with my husband. I live in the moment wondering where is he, what is he doing, if he is safe. When caring for a young child I worried when it got too quiet; now I worry about noises that I don’t recognize and rush to make sure all is okay.

Being a CarePartner is a challenging task that I willingly accept without really knowing where it will lead. I am learning more about this disease and the body as we move forward but even more important, I am learning about myself. I am finding my courage, my compassion and yes at times, the limits to my capabilities. Someone once said that being a parent was the most difficult task they had ever undertaken, I would say that being a CarePartner tops it. Yet, with all the difficulties I face, it is also my most rewarding role ever and I wouldn’t walk away from it for the world.

When my husband was complaining about being constipated, I turned to the internet where I found that they defined constipation as having bowel movements less than 3 times a week. He was within this range so I wasn’t too concerned. Then I learned that People with Parkinson’s really need to have a movement once a day or they become uncomfortable and blocked. This disease damages the nerves that support his digestive system slowing the entire process which results in bloating and gastric distress. I should have been listening to him.

In addition to the discomfort, there is a small area in the gut where my husband’s PD medication is best absorbed by the body. This is why his doctors always recommend that he drink a full glass of water when taking his carbidopa levodopa, they want it to pass through the stomach and hit that target in the gut for best efficacy. If constipation has backed up his intestinal tract, the medication cannot get there.

Traditional treatments for constipation are the same whether you have PD or not, eat fruits and vegetables that are high in fiber and drink lots of water. Many doctors will also recommend exercise as a way to encourage movement. My husband’s neurologist added a stool softener for a while and then switched to a mild osmotic laxative to help regulate his system. Constipation is a serious challenge for my husband, I am thankful we are able to talk about it as we work together to find a solution.  

I write a lot about what needs to be done when caring for someone with PD and thought today I should step back and say that just as all of our People with Parkinson’s have unique reactions to their diagnosis, we all respond in unique ways. My journey will be based on the needs of my husband, on our life situation, on our medical team. I wish there were a manual that could fit every possible scenario but PD keeps writing new twists everyday. I just need to be as prepared as I can for whatever pops up.

My husband’s PD creates physical challenges for him including tremors, gait, and swallowing. While he does seem to be impacted by “sundowners” every afternoon, he doesn’t have hallucinations, he just feels cold and tired. I am most often called upon to help him dress or take care of other personal hygiene needs. When I hear stories of having to deal with certain cognitive issues from my fellow CarePartners, I am thankful that we are not dealing with those things at this time. Yet, who knows what the future might bring?

While we are not all facing the same challenges, we are all fighting the same disease. There will always be universal things we need to support as we care for our People with Parkinson’s.  We need to encourage them to eat well, take their medications, and exercise their bodies. And we always need to remember that whatever challenges we face, it is not their fault. My husband is not in control of this disease he is simply trying his best to manage each and every day. Any support I offer must be grounded in his needs and lovingly reflect my understanding of that.   

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.