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.

“Just because we always have” or “because it’s a family tradition” are horrible excuses for continuing activities when everyone comes simply because they feel obligated to participate. If you are still doing things that you did 10 or even just 5 years ago, why are you doing them? Do they bring you joy or are they just a lot of work for nothing? These are questions that I had to face over the past couple of years and the answers have been surprising.

I started by thinking carefully about the things I was inflicting on myself and my husband in the name of celebrating holidays and family milestones. While it is nice to get everyone together, could we do it in a simpler or less stressful way so as to not exhaust ourselves? Does it need to be a family dinner at our house or can we just get together in a nice restaurant for lunch? If I really feel that the family dinner is essential to stay connected, can someone else be the host? Most importantly, do my husband and I have the energy to do this? Maybe the time has come to pass on some of the duties and to let go of some of the others that no longer have meaning.

Traditions are wonderful and well worth preserving when they bring value to family relationships. I have realized that they can also make for wonderful memories when participating in them is no longer a reasonable expectation for us. In this world of Parkinson’s, we are working to live more meaningfully each and every day. Let us also work to find new ways to celebrate so we can all enjoy those special times in our lives.

My husband is diagnosed with a chronic and progressive disease, things are changing and not for the better which is something I have had to accept. Sometimes we see the changes coming and other times they come on so slowly that we don’t realize they have happened. I suddenly find myself doing more for him and wonder why.

One change we have had to face involves social interactions with other people. My husband is an intelligent man and a great listener, which was something that drew me to him in the first place. He has always been able to hold down a conversation and has a sharp wit. As his illness takes its course, he is more likely to withdraw from speaking when we are out with friends and instead turns to me to respond for him. He still has so much to offer but the physical process of speech has slowed so that by the time he forms the words and gets them out, the group is off on another thought. It has become much easier for him to sit and observe than to be an active participant. We have found that conversations work much better if we limit ourselves to smaller groups that take the time to welcome all voices. We also go out with our friends in the PD community as often as possible because they are much more understanding and many share in his struggles.

There are times when I worry about what additional changes will come and what challenges we will face. I know that the only thing that slows the progression is exercise and so we box, we move, we sing and talk and even yell at times. We will keep on fighting back because it is the only thing we know to do and we will keep on growing as each new challenge comes our way.

This is so true. Too often I accept defeat before I even give things a chance. There is so much value in attempting new challenges as I always learn something regardless of the outcome.

I think one of the biggest challenges I have faced since my husband’s diagnosis is that he no longer drives. If we want to go somewhere, it is up to me to get us there. I am finding out that I am a much more capable driver than I thought and that we can go anywhere we went when my husband was behind the wheel. So far we have found our way home even when we get lost. It has been a growth experience for me.

Even more important though is how I “try” to help my husband as he is impacted by this chronic illness. The role of CarePartner is difficult at best and can sometimes feel devastating. Simple daily tasks have become challenging as he struggles with a body that doesn’t cooperate any more. I struggle with knowing when to step in and help and when to step back and let him do it on his own. “Try” for me can often mean doing nothing as I work to figure out how best to support him.  Success for us is almost always defined in different terms, for me it may be patience and for him perseverance or persistence.

We are both learning new ways to interact as we move forward together. We are learning to laugh when things are tough and to respect each other as we find our limits. There will be trials and errors, there will be successes and failures, but most importantly, there will always be love. We can make it through this together no matter what the challenges as long as we never give up and stop trying.

The instructor of my husband’s movement class is someone I’ve come to think of as a good friend and she tells us that simply smiling, whether it is real or not, will change your personal demeanor. The muscular contractions you make with your face fool your brain into thinking you are happy. I have tried it when I am having a difficult day and it really does work. She also teaches that laughter, fake or real, can help lift your spirits, another concept that I have tried and found to be true. If we can change our individual reality with such simple actions, can sharing concerns and positive feelings about others through thought, meditation or prayer help bring about a change?

It does sound rather unrealistic, yet even taking the time to consider positives changes I would like to see for other members of my community changes my perspective. If I can look at challenges other people are facing with compassion and caring, it also helps me look differently at the challenges I have in my day. I don’t need to compare our situations or lessen anything they are going through, simply think of them with hope and love. I know from experience that when I take the time to create and send positive thoughts out to someone, it can bring about positive feelings within me.

Making conscious choices to wrap my friends in positive thoughts does change the way I interact with them and positively impacts the way I move through my days. If I am presenting the universe with a positive face, how can the universe respond back any differently?