Our plan for retirement was to travel. I envisioned cruises, group tours, road trips and exotic destinations. I did not expect that we would have a third partner called Parkinson’s along on the trips. Needless to say, this additional party has meant that we must plan more carefully and be ready to adapt to challenges that pop up along the way. It has definitely limited what we do, where and how we go.

My husband no longer drives so the long road trips we discussed mean that I get to spend hours behind the wheel and he is the passenger. Getting in and out of the car can be challenging and then we add the fact that he is sitting for extended period of time and it gets worse. As a matter of fact, sitting too long in a car, on a plane, train, bus or boat is difficult for both of us, we need to be able to get up and move around. Otherwise, we need to add a day to either end of trips to allow for recovery from the travel ordeal itself.

We can still go places as long as we understand that things can change and do our best to be prepared. If we talk about the challenges we might face, we can be ready for them if they happen. We do our best to plan shorter fights with layovers that force us to get up and move. We don’t try to drive straight through to long destinations, instead planning shorter legs to the trip with carefully thought about how many stops to make. We accept that life is not what we expected it to be, but also that it can still be what we want it to be as long as we are willing to adapt and keep on trying. Who knows what wonderful and exotic things we may find as we modify our travel to be closer to home?

There are things that my husband can’t do anymore that I am still able to do. I think of the big things like driving, but there are smaller changes that can make his everyday more difficult. PD has impacted his sense of smell and taste, his handwriting, his speech, his balance. He likes to focus on the things he can still do, but sometimes I think about his challenges to remind myself to appreciate what I have. It sounds a bit selfish, doesn’t it?

Thank goodness I can still drive, otherwise we would be dependent on public transport or the goodness of others. And, regarding my sense of taste, I am the primary cook at our house, without the ability to know what tastes good, who knows what I would try to feed us? The fact that I am steadier on my feet allows me to help him when he isn’t, but it also allows me to do certain tasks which help keep us in our home.

Beyond the things that I can do for us, I am still able to do many things for myself. I recognize that aging and illness may impact my abilities and that I need to be grateful each and every day for the experiences I have. I am still able to work in my garden, walk my dog, write. I watched my parents, and now my husband, adjust to the losses and keep on going. I hope I can move forward with as much grace and acceptance as age starts to take its toll on me.

When I see my husband struggling with a task, I am often tempted to take over and do it for him. I know that I can get it done sooner and with less frustration for both of us. But, is that really what is best? If I step in whenever he struggles, won’t he begin to look to me to do more and more as he does less and less for himself? How can I know when I should step in and help and when I should stand by and let him finish, even if it takes a while?

The only hard and fast rule is that I always step in if he is putting himself or someone else in danger. He doesn’t drive, climb ladders or operate power tools anymore period. Then, I always ask if he wants my help before I step in. If he is working on something and feels he can do it by himself, I don’t want to interfere. I never want to give him the impression that I think he is incapable of doing things, but rather encourage him to work to his capacity. And, I am often surprised at what he can still do without my intervention.

While we are both on this journey with Parkinson’s Disease, we are also both on very different trajectories. My goal is to be here for him when he needs me, his goal is to continue living his life as fully as circumstances will allow. I need to remember this and stay out of his way to make sure I am encouraging his activities, not limiting them. He has a life to live, I need to let him.

I get so caught up in looking for information about my husband’s diagnosis that I sometimes forget that I have also been impacted by this illness and there are times I need support and advice. Just as there is a lot of information out there for someone with Parkinson’s Disease, there is a lot of information for someone like me who cares for them. Being a CarePartner for a spouse is a 24-7 job that I certainly never anticipated, why shouldn’t I seek out any resources available to make sure I am doing the best I can for both of us?

One of my favorite resources comes from the Davis Phinney Foundation and is coordinated by his wife, Connie Carpenter Phinney. I first encountered this in the Davis Phinney Foundation Manual called Every Victory Counts where they dedicate an entire section on CarePartners. I have since joined a monthly Partner’s get together that Connie leads and it gives me great information and connections within an international PD CarePartner’s community.  

It is so easy to lose yourself when caring for a spouse with a chronic illness. I have a version of the “Caregiver Ten Commandments” from an organization called Elder Care at Home that hangs on my wall to remind me that it’s okay to “schedule time for thyself and thy support network”. This more general advice goes out to anyone who cares for a loved one with a chronic illness but it truly speaks to the heart of who we are and what we do. Make time to look for those resources you need, it won’t be time wasted and you’ll live better for it.

Resources for CarePartners include Family Caregiver Alliance; Caregiver Action Network; your local Area Agency on Aging; and from the Davis Phinney Foundation The Parkinson’s Care Partner’s Digital Toolbox.

My husband reads a lot, from his morning newspaper to the mysteries that fill his afternoons. He uses an e-reader and his only complaint so far is that his eyes get dry and irritated. Taking a break brings relief and he always knows when he has had enough and needs to stop for the day. After speaking recently with fellow PD Carepartners whose people have more serious vision concerns, I decided to take a deep dive to see just what might happen in my husband’s future so we can be prepared.

The good news is that some common vision problems impacting clarity and color are related to the depletion of dopamine and the PD medications my husband already takes can help. The bad news is that there are other challenges related to visual processing and depth perception that may need additional interventions. The musculature that allows eyes to track and focus can be impacted because of this illness which can lead to visual convergence problems, the inability to track objects and double vision. My husband would no longer be able to read and that could be devastating.

As I said earlier, the only issue my husband currently faces is dry eye. He has spoken about this with his PCP, his neurologist and sees his ophthalmologist annually. One of his coaches leads him through eye exercises to help strengthen the neural and physical connections. Should his condition change, we know to ask for a referred to a neuro-opthalmologist for a complete exam. In the meantime, I am thankful for our PD network that alerted us to the possibility of vision issues in our future so we can be ready if, and when, they happen.

For more information, check out Eye & Vision Issues | American Parkinson Disease Assoc. (apdaparkinson.org) or the Davis Phinney Foundation’s Every Victory Counts Manual. 

I think Buddha’s teachings say it best, “As you think, so shall you become”. Being a CarePartner is a difficult and sometimes underappreciated life. I find it can be frustrating, depressing, even heartbreaking at times as I so want to help my husband but don’t know how. It is easy for me to fall into dark thoughts watching him struggle as his symptoms progress knowing it is all out of my control. But those dark thoughts are not helpful to anyone, especially myself.

If I can take his advice and remember to look at what we can still do rather than focus on what we can’t do anymore, life becomes much simpler. Maybe we can’t hike 5 miles anymore but we can still do a mile and that’s okay. Maybe long trips are too difficult but we can still make those shorter jaunts and enjoy the world just a little closer to home. Maybe life needs to move at a slightly slower pace, and maybe that is actually better for both of us.

My thoughts need to remain focused on the fact that we are still here and we have many years to share together. I can choose to spend those being sad and looking back at what we may have missed out on, or I can spend them immersed in living fully each day and the opportunities we still have to share and enjoy. “As I think, so shall I become” happy, loving and thankful for whatever challenges and successes life gives us.

Allergy season is upon us and it sends us to the drug store to find an antihistamine to help with my husband’s perpetual runny nose (also known as rhinorrhea, a symptom of PD anyway). There are many options out there but are they the right ones for my husband with PD? How will they affect his symptoms and could they interact with his carbidopa levodopa?

The first step in adding anything to my husband’s medication plan is research. I know that supplements and o-t-c medications will impact him differently thanks to his PD. Using the example of allergy meds, I have checked into what is available and potential side effects. If it can cause drowsiness or confusion, things his PD meds create anyway, it might be a bad choice for him. Once I have all the information together, I can talk with my husband and his Primary Care Physician, then give the medication a try.  

I haven’t always been as careful in urging my husband to take supplements. He recently had a bad experience with fish oil supplements that thinned his blood and complicated a surgical procedure he was undergoing. I had encouraged him to take it without first talking with his PCP and his surgeon. Now, we make sure that every medical professional he interacts with is aware of everything he is taking, including supplements and over the counter medications, before they treat him. They know the medical implications and I know my husband; between us we can surely come up with a plan that is safe and effective.

Visit Allergy medications: Know your options – Mayo Clinic to learn more about the many types of allergy medications available today. For more specific information about OTC meds and PD, visit Over the Counter & Complementary Therapies | Parkinson’s Foundation.

We are using more words to communicate these days without saying anything more. Let me give you an example. My husband’s voice is softer these days and he is dealing with some blurring of words. I don’t understand or catch only part of what he is saying and ask him to repeat himself. This may happen more than once before the conversation can continue. We have better luck communicating when we are in different rooms because we know we have to shout to be heard, maybe that is the answer?

I do have to admit that it is not all his problem, I am getting older and my hearing is not as good as it used to be. While his voice may be quieter, it is becoming more important that I position myself appropriately to be able to hear. I also need to pay attention when he is speaking. If my focus is split between listening and whatever else I am doing, the message can get jumbled or lost. I know he has challenges thanks to his PD diagnosis, so I need to do whatever I can to make sure we are connecting.

We used to joke about having selective hearing, tuning out those things we didn’t want to hear. Now, we are serious about focused hearing to make sure we hear everything we need to hear. I realize that we need to make a visual and auditory connection before we start talking. If I seek his attention before I speak, we connect. Then, instead of using “what did you say, can you speak up, or huh?”, we have a meaningful exchange about things that are happening in our day. Less words, less frustration, more connection, communication that works for both of us.

Being a CarePartner has allowed me to increase my skillset greatly. I never expected that I would be cleaning gutters, changing light fixtures or repairing garbage disposals. Thanks to Google, I am now able to add all of those items to my resume.

There are so many things that I am now willing to tackle that I never tried before. Our dishwasher was flashing a PF signal. I took it apart and now it is working again. I have put on my plumbing hat to repair the bathroom sink drain and the kitchen faucet, I have put on my masonry hat to clean and repair the fireplace, I have put on my woodworking hat to split firewood, all tasks that are new to me thanks to my husband’s Parkinson’s diagnosis.

I was hesitant at first as the jobs started coming to me, but I have learned that often the most difficult part of a new task is simply getting started. If I sit and worry about a project, it gets bigger. If I go ahead and do it, it gets done. And, I am able to pat myself on the back and accept that I am more capable than I thought. Maybe this an unexpected positive component to being a PD CarePartner?

I have three basic rules that help me maintain a semblance of balance in my life. They are

1. Accept and own that you cannot do it all.
2. Prioritize what you do carefully and honestly.
3. Learn to say “no”.

The first of these was the hardest to accept. I have to remind myself constantly that I am not superwoman and there are only so many hours in each day. My husband is good at helping me with this one as he will check in with me and suggest that maybe it’s time to stop or let things go. He can see so much better than I when I am overextending and is not shy to call me on it.

Which takes me to the second rule, I have had to learn to prioritize honestly. There are always going to be things I want to do as opposed to things I have to do. I have to look carefully at myself and my abilities as I sort through my tasks and decide what I will do each day. Then I have to own the fact that if everything on the list does not get done, it’s okay.

Finally, I need to be real with myself about what I can do and when I should say “no, I just can’t do that”. Often the person I need to say no to is myself. I find that it is difficult for me to accept my limitations but I am learning how to stop and ask for help.

Balancing all of the hats I wear is not always easy to achieve, yet I will keep trying to make sure life works well for both of us.