I am great at remembering everything I do wrong and beating myself up for it. I know that we are hard-wired to remember our mistakes so we can learn from them, it doesn’t mean I couldn’t learn just as much from looking at my successes. If I can take just a few moments at the end of my day and look for the positive moments, it reinforces the good times and helps bring balance to my mindset.

It might be something as simple as helping my husband with his shoes or making a call to a friend. Maybe I cooked something really tasty for dinner or took care of a chore I’d been putting off. Whatever those good accomplishments were, they need to come to the forefront of my mind because the missteps are always going to be there trying to bring me down.

I don’t want to live a life of regrets and disappointments, I would much rather live with a positive mindset and a smile on my face. Life can be challenging and it can beat me down, I don’t have to help it. When I really stop to consider my role as a CarePartner, perhaps even make a list of the typical things I do in a day, it is obvious that the positives outweigh the negatives. Maybe it’s time I recognized that.

I thought it might be time for me to share something I found years ago on the internet called “Caregiver Ten Commandments”. I’m not sure who first wrote it, I found it on at www.eldercareathome.org and it was credited to “Unknown”. I hope you find it useful and inspirational. A copy hangs next to my computer and I reread it daily.

Caregiver Ten Commandments

1. Thou shalt not be perfect or even try to be.
2. Thou shalt not try to be all things to all people.
3. Thou shalt sometimes leave things undone.
4. Thou shalt not spread thyself too thin.
5. Thou shalt learn to say “NO”.
6. Thou shalt schedule time for thyself and thy support network.
7. Thou shalt switch thyself off and do nothing.
8. Thou shalt not even feel guilty for doing nothing or saying “NO”.
9. Thou shalt be boring, untidy, inelegant and unattractive at times.
10. Especially, thou shalt not be thine own worst enemy, but be thine own best friend.

I wish I knew who originally wrote this so I could thank them for making my journey just that little bit better!

This is so true, and joy is sometimes in short supply so we need to find it whenever we can. Today I want to take time to recognize the contributions others make to my joy and express my gratitude.

 Where do I start? I am thankful to my husband’s medical team who care and really try to provide the best options for him. I am thankful for my own team as well, my PCP and therapist, who listen and try to help me face my personal challenges. I am thankful for my husband’s exercise coaches because they encourage and enable us both to be more physically fit. I am thankful for family who are here to help when they can and who are always here to listen. They see the changes PD has created in our lives and love us for who we are. I am thankful for the people in my life who help me take care of things, the gentleman who cares for my lawn and the others who come to help when called. They are patient and kind and always offer good advice. I am especially thankful to everyone in our local Parkinson’s community, the People with Parkinson’s Disease and their CarePartners. I appreciate their willingness to share their journey with me through laughter and tears. They show me a way to live with grace in a time of adversity. Their strength, patience and resilience inspires me to do better.

Finally, thank you for reading my words, for giving me an opportunity to explore and share this time in my life. I say it often, writing these thoughts down helps keep me sane. It means so much to me when you take a moment to comment on something I write. It helps knowing that someone else understands the challenges, understands me. And for that I am eternally grateful.

Today is the Fourth of July. There are community celebrations taking place all around us including firework displays. I remember the days when we would go together to see the show or simply out to enjoy the day, that just doesn’t happen anymore. It might be our ages, but I think it is more that Parkinson’s Disease doesn’t recognize holidays, the demands and limitations it places on my husband are the same regardless.

He still needs to take his meds on time and he will want to exercise today since that is the most important component of his treatment plan. He’ll need to rest mid-afternoon as usual. Our daily schedule is pretty structured and when we vary too much it can take days to get back on track. Added to that is the fact that I know what he needs from me when we are at home. Going out to new or different locations takes planning, can be unpredictable and adds to my burden. Celebrating holidays can be very stressful for me as a CarePartner if I let it.

In our house I will try to keep things low-key. We have been talking about the fourth for days and know that it will be noisy and disruptive tonight. We will hunker down and hope for the best. If we want a fireworks show we will watch one on our tv. Not as noisy, no traffic, no crowds and we can be comfortable while it is happening. I wish friends and family a Happy Fourth through social media and encourage them to celebrate as they choose while they can. We choose to have a quiet one.

I can’t walk through my house without seeing something that needs to be done. It may be a dust bunny peeking out from under the sofa or a basket full of laundry that needs to be put away. No matter how hard I work there is always something more calling my name. I often spend all day long working to care for my husband, our house and yard and end up totally exhausted at the end of the day. I drop into bed only to find that it all has to start over the next morning. It’s a never-ending cycle that has more to do with being alive than being a CarePartner. However, the CP part definitely has added to the list. Which brings me to the question, how to manage it all without wearing myself to a frazzle?

The first and foremost answer is to accept that I can’t do it all, but I should be able to manage it if I prioritize my tasks. There are always things that have to happen so those come first. This would include the care I provide for my husband. Then there are things that either need to happen or that I want to have happen. It’s a delicate balance figuring out which things go on which of those last two lists and tends to be flexible as our situation changes from day to day. It’s a good day when I can find a way to do some of both.

Trying to stay in control of everything my life is one way I fight back against my husband’s Parkinson’s Disease. It is my way of saying, ‘No, you can’t win.” I wonder what would happen if I redefined control to include letting go of some things? I can continue trying to do it all and fail, or I can modify the list to find success and contentment. The dust bunnies will be there tomorrow. I can be too if I can only learn to let go and let them be.

We were headed to an appointment with my husband’s neurologist yesterday when I finally found the courage to mention that I had noticed a new odor on him lately. It’s not overwhelming and only happens when he has been sweating heavily, but it reminded me of the CarePartner in the United Kingdom who swears she can recognize PD by the way a person smells. What I realized in that moment is that there may be physical changes brought about by this disease that my husband doesn’t even recognize. If I don’t mention it to the doctor, who will? And, what if it isn’t related to his PD diagnosis?

When I brought the subject up my husband admitted that he too had been noticing a more distinct odor. After our talk, he was the one who mentioned it to the doctor and had me chime in. What I was afraid would be an awkward conversation went okay. His neurologist shared that she has heard of this happening and that it usually has to do with the changes in the microbiome of the skin. The  sebaceous glands secrete more sebum which is where the PD smell originates. She did suggest that we mention it to his PCP as well just in case she might want to look into other causes but really felt it probably was one of those lesser talked about symptoms of PD.

When I see something new or different happening in my husband’s body, I need to stop worrying about whether it would embarrass him and speak up. It is important to discuss everything I notice, no matter how small, first with him and then with his Neurologist and PCP. Changes are going to happen and we need to be on the same page if we want to understand the causes and work to minimize the impacts. We can’t address a challenge unless we both are aware of it. If I make sure to let everyone on the team know I’m seeing something new, then we can face it together.

To read more about this study visit Musky Smell and Parkinson’s Disease | Psychology Today.

I have a gift for worrying about things that are totally outside of my control. I think I inherited it from my mother but that may just be an excuse. I worry about the world, the community we live in, problems facing my family, friends and acquaintances. I often take on another person’s worries and set aside my own issues while I look for solutions for them. It isn’t that their challenges are more important than mine, rather that it gives me an opportunity to escape from my stuff to work on theirs. When I try to fix other people’s problems I am just avoiding my own.

Caring for a loved one with a chronic illness is not a picnic. The task is much bigger than I ever imagined and comes with a whole boatload of potential worry. I am anxious about our health, our home, our financial welfare. My primary concern is always about our future and “what will tomorrow look like?” With Parkinson’s Disease in our lives, we can never know for sure.

My personal journey contains enough challenges without adding additional burdens. I need to be able to differentiate between those things in my life that I am in control of and those I’m not. I want to be able to express my concerns to other people, share my thoughts, maybe discuss options and then let it all go. Given the chance, everyone has the ability to find their own solutions without my intervention or worry. Just as importantly, I have to stay focused on what matters most when I am not trying to fix things for everyone else.

I am especially surprised by some of the things I hear coming out of my husband’s mouth. I live with him and have developed my own opinions and perspectives about what is happening; a perspective that I believe is pretty accurate. However, I am still caught unaware sometimes when my husband is talking with his doctors. I found out during his recent Physical Therapy appointment that he is having leg cramps everyday, when did those start? Better still, why hasn’t he mentioned them to me before?

I go to his appointments with the expectation that I might learn something new from the professionals, not from him. We always talk about anything either of us think is important before his appointments to be sure priorities get covered. Then he catches me off-guard by telling the doctor about something totally out of the blue. Maybe that’s why he does it, to see the surprised look on my face? At any rate, it makes me feel like I am not doing my job of CarePartner well enough or I would have known about whatever it is.

Since that PT appointment, I am massaging his right leg before bed to see if we can alleviate some of the cramping. He says that it seems to be helping. His choice to talk with the professional about his aches and pains does not reflect on me, I can only work with what I know and what he decides to share. That is why it is so vital that I am present at all of his appointments. And that I practice my best listening skills so I can really know what is going on beyond what he tells me.

When my husband was struggling with getting in and out of our car, which was a sedan, we traded it for an SUV. When my husband was having a tough time getting off the old couch, we bought a newer one that sets up higher. When we needed a new bed, we bought firm mattresses that would make it easier for him to roll over and sit up. When he chokes on his food, I cut things up smaller. When he falls, I rearrange the furniture to make our home less dangerous. I am doing everything I can to make his journey with PD less challenging, but does it really help?

I sometimes wonder if I am just making work for myself. I can’t predict what is going to happen next with my husband and yet I spend my days trying to cushion his world for him. Some of the things I have done for him have helped, some not so much. Some even make my life harder, that new couch we bought is really uncomfortable. At what point do I need to say I’ve done all that I can? His disease is going to progress and there is no way I can possibly stay ahead of it.

Just as I have had to accept that my husband has this debilitating illness, I need to accept that I can’t be the remedy. I can work myself into a frazzle trying but, until there is a medical breakthrough, PD is ultimately going to win the battle. Does that mean I give up trying? No way, it just means I use some common sense in my efforts to help. Before making those big changes, I need to step back and look at the impact it will have on both of us. I need to talk with my husband to make sure that what I am doing makes sense for him and isn’t just something I think he needs. Finally, I need to accept that I can’t be his protector because life just doesn’t work that way. I can be his partner and his lover and that will have to be where I call enough.

My husband has been having a great couple of weeks. We adjusted his DBS settings which seems to have helped. His balance is better, and he seems to have more energy. He might disagree but this is my perspective. I especially noticed this when he wanted to help with the yard work a few days ago and then yesterday when we were getting ready for a family dinner. He was setting up chairs and helping tidy up the house. It felt almost like old times again.

I know that this can change at any time. He has his good days, we seem to be having a run of them, but then a bad day can hit without warning. I tend to be overprotective and yet, these past few days I have been stepping back more and letting him be. I am still watchful, just not staying as close and hoping that he will let me know should he need my assistance. It’s difficult for him to ask for help so when he does I know he means it. I need to stay ready.

Knowing when to step in from when to step back is challenging. My husband can get completely dressed one day and need help the next. He can get out of bed one morning and need help the next. He is full of energy (or as full as someone with PD can be) one day and napping the next. My task, as his CarePartner is to be here for him. I always try to give him the lead and let him tell me, either through his words or actions, the level of care he needs. It is his battle with Parkinson’s and he deserves the opportunity to fight it on his own terms and to the best of his capabilities, whatever that looks like on any given day.