I take time on a daily basis to write in a journal, but I also take a separate moment to write in this blog. Allowing myself that space, that time, really helps me better understand the journey and gives me the strength to continue. Often my thoughts are random, sometimes related to what is happening in our lives and other times things I might have come across in a meeting or webinar. At any rate, here are a few of my ramblings, I hope you find them of value. And yes, I know they are written in third person because I find I pay more attention if it feels like they were written as instructions for me and not introspection by me.

• Make time to have conversations about anything but PD to help keep your world from shrinking too far.
• Support your partner’s independence whenever you can to help them maintain their dignity and to help you maintain your workload even if it does take twice as long for them to do things than for you to do it yourself.
• Listening is often the most valuable tool you can bring to the challenges you will face as a CarePartner.
• Expect interruptions in your day and you won’t be upset when they occur.
• Talk with your partner about potential futures so that you are both prepared for what might come.

And the one that I struggle with the most-

• Is it really tough or are you just making it that way? Look for ways to make the journey easier not more difficult and remember that it’s okay to ask for help when you need it.

My husband exercises six days a week and before every session he almost always says “I’m not ready for this today.” Then he gets his equipment set up and does it anyway. I was thinking about this the other day, and it struck me that his comment not only applies to exercising but to the Parkinson’s experience as a whole. Neither of us was ready for this, yet we keep on doing it don’t we?

Having a Parkinson’s Diagnosis reminds me of an old Star Trek quote “Resistance is futile.” Parkinson’s Disease is like the Borg invaders in that it is going to assimilate my husband’s body, but just like in the movie the battle continues. PD may win in the end, but not without one heck of a fight. We have to accept that PD is going to be with us forever, but we don’t have to let it control that forever.  

Which leads to another great quote, this time not from a movie but from Michael J Fox, one of my PD heroes. Michael speaks about acceptance, not assimilation when he says “Acceptance doesn’t mean resignation; it means understanding that something is what it is and that there’s got to be a way through it.” Yes, we have to accept my husband’s diagnosis of Parkinson’s Disease but we don’t ever have to stop fighting. If that means exercising six times a week, then bring it on and we’ll do our best to be ready.

I recently took a survey called the “Caregiver Burden Survey”, also known as the Zarit Burden Interview, that was developed forty years ago to help professionals and caregivers better understand the stresses they face. It is a quick questionnaire with a five-point scale that asks not about what you are doing but how you feel about what you are doing. Included with the assessment is a breakdown of what the different scores mean and suggestions of things to look for at each level of burden. The last page lists resources that were added following a 2013 Scandinavian study looking at what is needed to “unburden” a caregiver.

I had a copy of the survey for over a year before I finally decided to take it. I am not sure what I was afraid of, why I kept putting it off. Perhaps I thought that my burden was so small it wouldn’t even register. Or, perhaps I was worried that I would find out things were worse that I thought and I might need to take some sort of action. It took me about 20 minutes to answer the questions and I really had to think about a few of them. I learned that I am on the cusp of moving from the lowest level called “Little to No Burden” into the next level which is “Mild to Moderate Burden”. Not bad for being in my twelfth year as CarePartner for someone with Parkinson’s Disease.

Whatever my initial concerns were, now that I have completed the survey I am thankful for the clarity it brings to my role. There is a sense of relief in knowing that my feelings matter and should be recognized. It is also validating to see that many of the suggestions they make to avoid burn-out are things that I am already doing. My plan now is to revisit the questionnaire every six months to help me recognize how things are progressing. This survey will enable me to be aware of where I am in my journey so I can better understand and care for my own mental health.

For your own copy of the survey, visit Caregiver Burden Assessment on the AgingCare.com website.

I find that my days are often defined by the role I perform as I work to provide care for my husband thanks to his diagnosis of Parkinson’s Disease. There seems to be three distinct assignments based on what might be happening in our lives or his level of need. I can be a caregiver, that person who provides personal support in his activities of daily living. I can be a caretaker, making sure his meals are on time, cleaning and caring for our house. Or, I can be a CarePartner, sharing his journey with Parkinson’s but also honoring that we were a loving couple long before PD made an appearance in our lives.                                                                                

Why would I evaluate my tasks and separate them into categories? Because it gives me a chance to think about how I spend my time and where I might need to make changes. If my days are unbalanced so I am spending too much time on caretaking or caregiving then maybe it’s time to step back and refocus because I am not truly able to enjoy our partnership. For example, when most of my time is spent doing chores that could be done by someone else, it might be time to look for alternatives. The role I am filling changes my motivation and mindset as I move through my day and could impact how I interact with my husband. He deserves to be treated with love and respect regardless of where my head is at.

Do I have a choice? If so, I think I’ll be the loving CarePartner so we can have some fun together. There will be chores at some point so I may have to switch to caretaker for a while and there will be times when he needs some help throughout the day so I need to keep caregiver close. For the most part, though, I really want to be the loving partner I signed up to be when we made vows to each other two decades ago, I just hope that PD agrees with me today.

We had a good day yesterday. It wasn’t really anything we did, but the day was calm and comfortable. There were a few chores I needed to get through and my husband helped when he could. His exercise class was a stretching class that he was able to do on his own, so I sat it out and did other things. It was a day when we simply existed, and life was as close to normal as it gets. I like those kinds of days.

We have plenty of the other types of days when things just don’t seem to be working. It may be that one or the other of us is having a “low-energy” day and I can’t get motivated or motivate my husband. Or it may be one of those busy days when I don’t seem to be able to get anything done because something else is always calling my name. And, of course, there are the days when something unexpected happens, like my husband taking a fall, and we have to deal with the ramifications of that. But yesterday, none of those things applied and it felt good.

The bad days demand my attention and so I don’t always take the time to recognize when the good days are happening. My body tends to be on alert all the time expecting something to occur and when I can actually let go of that, it feels great. I always have to be present and maintain an awareness of what is going on around me, but on the good days it is a more relaxed consciousness as opposed to the vigilance I sometimes feel. Yesterday was good, who knows what today will be like, but I know I will make it through regardless because there are still good days ahead.

What was I thinking when I wrote these words? Exactly which of the new skills I am having to learn should be thought of as opportunities? How do I reframe the situation so that the things I am being called upon to do are positive activities?

My husband was always the barbecuer in the house and he did a darn good job of it until he didn’t feel comfortable using the grill anymore. So, I took over. Those first few attempts resulted in some undercooked or overcooked meats and charred vegetables. I could manage anything that was wrapped in foil, but to actually cook the food directly on the grill was beyond me. I did my research, kept trying, and 3 years after I took over as grillmaster I have mastered the basics. 

Negotiating with contractors was another task that usually fell to my husband. We would talk about work that needed to be done and then I would leave it to him to make the contacts and get things set up. As things progressed, talking on the phone became challenging for him and I was the one who got to make the calls. He would sit beside me, coaching me on what to say until the day I finally asked him to back off and let me do it myself. We still discuss things but I am the one who normally ends up working directly with the contractors whether it’s our lawn guy, our plumber or the guy who cares for our trees.

It’s interesting that as I am called to do more, I am growing in confidence to try more. Yesterday we had a low tire and, even though it took me to two separate tire stores, I was able to take care of it while my husband was napping. These may not be wonderful or amazing feats, yet they are things that need to be done and it is satisfying to know that I can do them. I don’t look forward to the day when it all falls to me, but I know that I will be ready thanks to the skills I am developing along the way.

I recently came across an article about possessiveness, a characteristic I had not heard of nor associated with myself, however, after reading the article it makes me wonder. The piece came to my email as part of a WebMD daily newsletter and this one really struck a note. I know we have become somewhat co-dependent on each other as his illness has progressed, but there is also a possessive quality about our relationship, something I hadn’t thought of before.

In the article they describe possessiveness as “fundamentally a fear of loss” and go on to say that “Possessive people worry that their partners will leave them.” My worry isn’t that my husband will actually physically leave me, my worry is that I am losing the man I married gradually and that one day I will wake up and he will be entirely gone. And yes, it makes me angry and sad that I can’t do anything about it. They talk about the lack of trust in the relationship that can cause feelings of insecurity, but it’s not trust I am losing, it’s the man himself.

The authors offer four things to help me deal with my feelings of possessiveness, interesting suggestions that might help in my role as CarePartner. They suggest that I avoid snooping, talk with my husband about my feelings, maintain other friendships and find a therapist. Snooping is not a concern as I can easily see changes in my husband and our relationship thanks to his Parkinson’s Diagnosis. Otherwise, I agree with their thoughts. I do need to have a network of friends, I do need to talk with him about what I see happening until we can’t talk anymore, and I do need to have the number of a good therapist just in case.

To see the article in its entirety click here-Possessiveness: 4 Signs to Look For (webmd.com).

I was out to lunch with friends a while back and the conversation turned to how my husband was doing. one of them turned to me and said, “It must be difficult for you.” How am I supposed to respond to that? Does she really want to know how it feels to see the man I love struggling with the simplest of tasks? Does she really want to know that I am doing things I never thought I would be doing for him because I love him and they need to be done? Does she really need to know how tired I am sometimes or how much I miss the things we used to be able to do together? Will she understand when I burst into tears right here in the restaurant? Instead, I say the words “it’s tough sometimes but I manage” and change the subject.

If I talk to her about how I feel, then those feelings become real and I would rather not have to deal with them. I have learned to accept where we are on our journey and find joy rather than regret. If I dwell on what isn’t, I can’t appreciate what is. And what is matters a lot to me. There is so much we still have and can still do. As to the things I miss, I am thankful that I got to do them in the first place and nothing can take away the wonderful memories I share with my husband.  

So, when those from outside out PD circle ask me how I’m doing they are always going to hear that I am okay and all is fine. I have a loving husband, fantastic memories, a positive support network and a plan for whatever the future brings. It may be tough but I can and will always manage.

My husband has developed waxy skin, especially on his upper chest and shoulders. He has had patches of dry skin on his face for as long as I have known him and also dry scalp, which he self-diagnosed as dandruff.  I was wondering if any of these have anything to do with his diagnosis of Parkinson’s Disease and, thanks to Google, learned that his skin issues definitely could be connected.

 Many people with Parkinson’s Disease have skin conditions. For some, it is the dry skin patches or oily waxy skin like my husband is experiencing. He also tells me that he doesn’t sweat, even when exercising, but others within our PD network experience excessive sweating. We have been advised that he is at greater risk for skin cancer, specifically melanoma, and some of our friends are already dealing with this issue.

 Sometimes these changes are caused by medications and can be alleviated with a change in dosing but other times it is simply thought to be the result of the changes in dopamine production in the brain. My husband uses a shampoo to treat his dry scalp and has a cream that he puts on the irritated patches on his face. As to the waxy or oily skin, he showers regularly and otherwise puts up with it. He should be using sunscreen to protect from melanoma but that is a fight I have given up on. He tries to see a dermatologist annually. Knowing that some of his skin challenges pre-dated his diagnosis, perhaps this information will someday help with early diagnosis?

For more information see Skin Changes | Parkinson’s Foundation; and specific to the potential for skin cancer see Parkinson’s Disease & Risk of Cancer | American Parkinson Disease Association (apdaparkinson.org).

There are days when I really want to trade places with my cat. She is sleeping on her perch next to my computer desk and every so often she opens one eye to check out what I am doing. There’s a nice sunbeam coming in the window, and she doesn’t have a care in the world. What a life.

Her meals are always provided as opposed to my being the household cook. She never has to clean her toilet whereas I not only have the toilets, I also have the entire house. She is responsible only for herself and, when she wants alone time, she has multiple locations in the house where she can hide out for an hour or two. I am so jealous.

But, she also doesn’t have the shared experiences of daily triumphs over the challenges PD puts in front of us. She doesn’t have my sense of accomplishment at the end of each day knowing that I have done a good job of caring for my husband and myself. She may not carry the same load that I do but she also doesn’t have the reward and the love that comes from being his PD CarePartner and the caregiver of our lives. So maybe I won’t trade, at least not yet.