As your partner’s illness progresses it can easily take over both of your lives. As an example, my husband now takes pills 6 times a day, but can’t eat for an hour before or after. The pills make him drowsy so he takes a nap every day after lunch. We know that exercise is the best remedy for PD symptoms, so we box twice a week which takes up 2 hours each time and we go to a 90-minute movement and voice class once a week. In addition, he tries to get 20 to 30 minutes of moderate exercise daily. Isolation can lead to anxiety and depression so we (mostly I) plan opportunities to meet with friends once or twice a month. We joined a support group that we attend regularly as well as having a breakfast off shoot of that group that meets once a month. We work to eat healthy, well-balanced meals on a regular schedule and try to cut down on sugars and processed snacks. Finally, we strive to get 7 to 8 hours of sleep every night. PD may not be terminal but it definitely is impactful.

In the midst of all of this work to support my husband, people are reminding me to take care of myself. I am supposed to find outside interests that provide a break from the realities of living with someone who has PD. I do try, but when I have the time, I don’t have the energy and when I have the energy, I really want to spend it with my husband doing things we enjoy together. So, for now, it will be the small breaks that will keep me sane as we continue our battle, understanding that, unfortunately, PD is taking the lead.

This morning I find myself caught up in negative thoughts and worries, anticipating problems before they happen. We have a project to do here at the house. I want to do it myself, but my husband wants to help, which I think will be a problem. We often have very different approaches to things and I expect that he will want to do things his way; he does like to be in charge. It makes me nervous having him watch, as I am sure that I will have a very different idea of how this should be done.

If I stay in this mindset, we will not get anything done and it will end up being a stressful day. However, I can choose to look beyond my negative state of mind and communicate my concerns with him. If I listen to his years of experience, perhaps we can both find that there is a positive side to the situation, as we work through to a joint solution. I just need to have faith that things can go right as long as we work together, and be thankful he is here to help, not push him away.

We have many friends on this PD journey at various stages of their illnesses. It is interesting to look around and see how different this disease is for everyone. Some have little or no tremor whereas others, like my husband, struggle with hands that shake most of the time. There are members of our network who struggle to walk and another who runs marathons. It is amazing how the same diagnosis can present in so many different ways.

When we first learned about the local support group, we were hesitant to join. I didn’t know what we would find and wasn’t sure that I wanted to meet others who were more advanced in their illness. I was afraid to come face to face with our future. After being part of this amazing group of people for more than 2 years, I am now ashamed to admit that I ever felt that way. The reality is that we won’t know what the future holds for us until it is here.

Yes, there are people out there who have more advanced symptoms of this illness. Some are in wheelchairs, some with walkers, but they are still fighting. I have met so many wonderful people because of this diagnosis and know that we will be stronger thanks to their friendship and support. They are not our future, they are our present, and together we make it a better journey for all.

The physical characteristics of Parkinson’s Disease can interfere with a person’s ability to communicate which makes it a very isolating diagnosis. As the disease progresses, muscles and joints become tight and stiff including the muscles in the face and mouth. Production of words becomes more challenging as the person with PD has to think through each step of the process to make it happen. If you cannot communicate with other people, your world automatically becomes smaller and closed off.

We have discovered ways to fight this problem. When we are out with other people, I try to make sure that my husband is included in any conversations by turning to him and asking his thoughts or redirecting to something he has done or said lately. We avoid large groups because of the noise and distractions and instead try to focus on fewer people and one conversation at a time. I also do my best to give him the space and time to respond because while his internal processes may have slowed, his cognition and wit haven’t. He has the words, he just can’t always get them to come out in a timely manner. By the time he is able to speak, the conversation has moved on to a new subject and, instead of participating, he becomes an observer.

On the rare occasions when I need to be his voice, we both understand that it’s okay. Those are normally times when he is tired and he will look to me to step in to provide the volume and intensity he has lost. Throughout it all, I remember that if we can control the pace so everyone can take a moment, take a breath, and give him time to engage, the conversation is always enriched by what he has to share.

There are so many times lately when I am my own worst enemy. I expect too much from myself and am quick to reprimand when I make mistakes in caring for my husband. I am short with myself when I can’t do tasks around the house that I have never had to do before. I get irritated when he needs help and I don’t know what to do, or simply can’t provide it. It frustrates me that I need to ask for help when things should be so easy.

The longer we are on this journey, the more I discover how little I know about providing care for another person. There seem to be new and different challenges everyday from helping him with basic personal grooming skills to communicating with his doctors and dealing with insurance companies. As his symptoms progress, his needs will grow and I must find a healthy and productive way to deal with what is coming.

Instead of berating myself for not having the skills needed to provide good care, I am finding resources in our community that can help. I am also figuring out which tasks I should tackle and which might be best handled by someone else. I am learning to let go of some of the household jobs so that I have more time to focus on my husband. And, I am finding out that it is okay if I am not perfect doing everything, instead just striking a healthy balance of home-care, partner-care and most importantly self-care. 

I find help from Parkinson’s Resources of Oregon , through their classes and support for CarePartners. The Area Agency on Aging and Disabilities has classes that can help with basic skill building. I have utilized on-line resources through the Parkinson’s Foundation, Michael J. Fox Foundation, and the Davis Phinney Foundation that are specific to providing care for someone with PD. For more generalized caregiving, AARP provides lots of great information.  

There are times when I think about what my husband’s diagnosis of Parkinson’s Disease has done to us and I want to cry. There are many things that I miss, the spontaneity in our relationship, my husband’s sharp wit, his smile. I miss being able to go and do things without having a pill alarm going off every 3 to 4 hours. I miss the openness of our schedules before we became tied to a regimen of medications, meals and naps. While we are still able to have great conversations, the pace is slower, and we’ve lost much of the playfulness. There are times when it feels like I am losing touch with the man I married and am living with a shadow of him instead.

Those are the times when I have to step back and take a breath. I look at our current lives and see the challenges we are conquering every day. How can I regret losing what we once had when we are still so involved in what is happening now?

 Instead, I find gratitude for the fact that we are still here and working together to keep going. There may be things that we can’t do anymore, yet there are also things that this illness has brought to us that have added to our relationship. We are being tested everyday with new challenges but there are also new opportunities. There are wonderful new people who would not have been a part of our lives were it not for this diagnosis. We have taken up new hobbies, such as boxing, that would have never happened outside the PD world. In many ways we are healthier than before and are finding strength we never knew we possessed.

I will allow myself to grieve any perceived losses only to the extent that I also recognize and celebrate the successes we encounter. I will do my best to minimize my negative feelings and maximize the positive activities in our daily lives that still bring happiness and fun. I will find private times to explore any sorrow for what might have been, so that I can let it go. I will find healthy ways to continue my personal journey as a CarePartner that won’t negatively impact our journey as we work together to face his diagnosis of PD.

I worked for several years assisting families in finding the resources they needed and it gave me such a feeling of accomplishment when things would come together for them. Now, when it is me facing tough times, I find it difficult to ask others for the support that I was so happy to give. I need to remember that while helping others is rewarding, so is letting others help us. And, it is so true that often just talking about a challenging situation can help you figure out a way through. Shared burdens (and challenges) are definitely less difficult to manage.

My husband has always been my best friend and the one I turned to first when I was having a tough day. Now, when the difficult things I face are related to his disease, I don’t want to go there. I don’t feel that it is okay to add to his already full plate of PD challenges. How can I tell him that I am frustrated today because he is moving so slow when I know he is doing the best he can?

So, instead, I have learned to branch out and find new best friends. It is essential that I have people in my life who understand the challenges I face because of his diagnosis. I have found a fellowship of CarePartners through our PD support groups. I can call or drop them a note, or sometimes, just knowing they are there is enough. I also have a group of people who knew us before the PD symptoms progressed. I can reach out to them for help as they watch our journey with love and encouragement.

I remember that we all have our challenges to face, we all struggle from time to time. If I can be here for my friends when they need someone, then they will be there for me and we can all keep moving forward. We can have a never-ending cycle of caring so we all feel supported and loved at the times when life is most challenging.

When we worry about things that haven’t yet come to pass, we are not able to be present in the current moment nor are we able to fully enjoy the activity that is coming. While some anticipation is normal, there is a huge difference between looking forward to something with excitement or dreading its arrival. If you are caught up in all the things that can go wrong, you will miss out on the things that do go right.

When my husband was first diagnosed with Parkinson’s I was frightened. I thought I knew what to expect based on what I had witnessed thirty years ago when my parents struggled with this same disease. My father developed mental problems early, I wonder now whether it was Lewy Body Dementia, and became wheelchair bound in a very few years. His illness spiraled quickly, is that what we were facing too? No one had yet told me the adage, “If you’ve seen one person with Parkinson’s, you’ve seen one person with Parkinson’s”. I was preparing for the worst.

I could have let the anticipation of that outcome overwhelm me, but instead I opened my heart and mind to the possibilities of a different path. I accepted the diagnosis and started looking for what could be rather than what had been as we started our journey together.

Today, I have learned to let go of worry. Whatever Parkinson’s Disease has in store for us will come whether I worry about it or not. Instead, I am doing my best to encourage and support my husband as we meet and overcome the daily battles. When those new challenges come, we will face them with courage and positive motivation. Living for today, not worrying about tomorrow, and loving all the way, we will make it through.

I meet regularly with a group of fellow CarePartners and one thing that almost always comes up is what we do to take care of ourselves. This conversation often leaves me wondering what more I should be doing. I know that my partner’s well-being is heavily impacted by my well-being. And, this applies to his mental as well as physical health. The best thing that I can do for my mental health is to develop and maintain personal interests. I need the opportunity to remember that I am an independent and valued person with my own talents, many of which have nothing to do with caregiving.

This is so true for those of us who, after many years of marriage and outside careers, find ourselves in the role of CarePartner. If you don’t take time for yourself and the things you love, you have little to offer others. I can spend my entire day immersed in caring for my husband, as I did after a recent surgery, but then I become a nursemaid with little else to give. I quickly become exhausted and cranky and he doesn’t get even appropriate, let alone good care.

It is important to find time each and every day, even if it is just 15-20 minutes, that is your time uninterrupted to do whatever it is you want. Find activities that refresh your soul and bring value to your life, whether it is painting, yard work, or reading a good book. Give yourself a guiltfree break and enjoy it, then rejoin your partner for a wonderful day.

The Davis Phinney Foundation shares some great suggestions for self-care in the article “Parkinson’s Carepartners: 9 Ways to get the Care You Need”. Click here to check it out.

There are days when I definitely feel like just staying in bed. Those are the days when I have to get up and “fake it until I make it”. I can always look to my husband for inspiration as I remember that his challenges are bigger than mine, yet he keeps going each day. Other days I just need to find the will power to push on through and hope that things will get better.

As I work through these challenging mornings, I also need to remember to allow myself time and a space for the negative thoughts. It is important to acknowledge them as genuine feelings because I am human and am facing a difficult situation with my partner. The key is to never let the negativity overwhelm me, or when things begin to reach that point, I need to take a break and look for help.

In those intense moments, I have learned to use coping skills like journaling or reading. I may go outside for a few minutes to change the environment and clear my head. When that doesn’t work for me, I reach out and connect with others from our PD network. Sharing my struggles with people in similar circumstances, even just knowing that there are others out there who understand, can help give me the strength to make it through.

So, when the sun gets up in the morning and I just don’t want to, I will look to the strength of those around me, my husband and my friends. I know that through their support and love I can make it as I move forward in my day.