I wanted to take a moment today to express my thanks to everyone who reads this and especially to those who respond. When I started writing I wasn’t sure what to expect. I knew I needed an outlet for some of the thoughts that were floating in my head surrounding our journey with Parkinson’s Disease. Journaling gives me a place to vent my feelings, this blog gives me a place to explore those thoughts and feelings even more.

It is a struggle to understand why my husband was chosen by this disease and hope by chronicling some of the daily challenges it might start to make some sense. It helps me immensely knowing that we are not alone on the journey, that so many others share our struggles and can identify with some of what I write about.

Always remember when reading these words that all of our journeys will be unique based on how this awful disease presents within our lives. My husband’s challenges will drive where I go and what I write about. Take what works, leave what doesn’t and when I say things you really don’t agree with, please feel free to comment or ignore them. I am not trying to define the journey we all face, simply trying to make sense of mine. Thank you so much for coming along and sharing some of the ride.

I often refer to my husband as my “Person with Parkinson’s” as if it is a package deal. I forget that he is a Person foremost and the disease is something that happened to him. Something that was totally unexpected and definitely unwanted. It is as unfair of me to think of him in those terms as it would be for him to identify me as his caregiver, nothing more. We both deserve better.

None of the symptoms he shows reflect intentional behaviors on his part. He cannot help that he is slow, he cannot help that his voice is quiet and muffled, he cannot help that he tires easily or that so much of our lives seem to revolve around his schedule. He did not ask for this disease and the changes it brings, I should never allow myself to blame him for them.

It is very much okay for me to blame this blasted disease and to be angry that it has afflicted us as long as I don’t let that anger impact our relationship because I know he is angry too. It is okay for me to shed tears over what we have lost in the privacy of my space as long as I remember where the source of that sadness lies. It is definitely okay for me to hate this disease and what it is doing to our lives because it gives me an outlet for all my negative energy. Then I can focus all my positive energy on trying to understand, support and love the man I share my life with.

My husband slipped his shoes off the other evening, and I noticed his socks. They were both white, but one had grey toes and the other didn’t. I helped him put them on that morning, how did we manage to pick mismatched socks? I asked him to look at his feet and we both burst into laughter. It was one of those silly moments, those “how on earth did we do that?” times that bring joy to our life. We got round two of laughter when he pulled another pair of socks just like them from his drawer the next morning. And no, he didn’t wear the mixed pair that day.

Some mistakes are good to learn from, some are hazardous, and some are just funny. I like the last category since our lives are so serious so much of the time that when we can find a chance to chuckle it is wonderful. I don’t mind that we are making fun of something I did because the value of laughter is so great. There are few things I can do in life that bring the same release and relief as a good belly laugh. The act of laughing strengthens my lungs, increases oxygen and blood flow to all parts of my body and improves my mood. It’s even better when I can share this with my husband.

In another mindset I might have gotten upset about the sock mix-up or even been embarrassed. Today I am just thankful that I can still find things to laugh about. Joy is not always a part of our journey with PD, isn’t it great that every once in a while, thanks to a pair of socks, it can be?

We had a lot of plans for retirement, some of which I could do alone. I remember dreaming of being able to spend an afternoon shopping, window or otherwise. I enjoy wine tasting and looked forward to visiting some of the local wineries with my husband, but he no longer drinks wine, nor does he drive so this is not an experience we can really share. It would be nice if I could go with friends and not feel like I’m committing a crime. I like to go for walks, again something we did together but can’t anymore. It would be great to have a walking group, but I feel bad at the thought of leaving him at home.

I need to get over my personal feelings of guilt and have an open conversation with my husband. Maybe there are things he would like to be doing that I am keeping him from. I am sure that he would understand my need to be more active outside our home and yet I am afraid to bring it up. Even more importantly, I need to give myself permission to have these thoughts and to find ways to act on them. It is okay for me to want to go out with friends and it can be more often than once a year. It is okay for me to have fun when he is not able to join me as long as I prioritize having fun together when he can.

Opening the doors to additional and separate activities could bring a new perspective to our relationship. I get that his needs have to be considered in any activities we do, but if we can work things out so that he is able to function without me always being part of it, then so much the better. He will be going to the gym with someone else starting in a couple of weeks, maybe this will be the start of a new direction in our lives together?

I have been looking for a standard First Aid Kit for our home, something that would bring all of our basic supplies together in one location, so I don’t have to go looking for the ointment and the bandages and the whatever whenever things happen. This brought another thought to me; wouldn’t it be nice to have my own personal CarePartner’s First Aid Kit for when I need a quick fix?

What would I put in my kit; what items would make a difficult day go better? I think it would need to include a couple of different types of tea in my favorite mug, something relaxing and something with just a hint of spice to help calm my mind. There would be something deliciously chocolate to snack on and then something salty to offset the sweet. Perhaps some dried fruit and nuts would round out the treats. I would include a book of poetry or short stories, something I could pick up and read for 15 minutes then walk away from satisfied. Finally, I would wrap it all in a basket with a nice fleece throw and put it away for those special times.

When life becomes overly challenging, as we all know it can, I could pull out my kit, cue up some nice calming music on my phone (making sure the ringer is silenced), and find my quiet place. I know from past experience that just 10 to 15 minutes of calming activities reinvigorates me when things get crazy. I think I’ll put my kit together today, you never know when I might feel some crazy coming on.

We all know about “Activities of Daily Living” or, if we didn’t before Parkinson’s entered our lives, we certainly do now. It’s the bathing, dressing, toileting, eating, all those things we do by ourselves that we take for granted until tremors, stiffness and cognitive decline take them away from us. I am speaking figuratively of course because my ADLs are still pretty good, it’s my husband who is struggling thanks to his diagnosis of Parkinson’s Disease. In my mission to make our lives easier, I did some research and found a few good tips that I am planning to incorporate into our daily schedule.

Some things I came across were things we have already done. We installed grab bars in the shower and around the toilet and added a raised toilet seat in one bath. We put a bidet style toilet seat in the master bathroom to help with personal hygiene. All have been great helps for us both, I use the grab bars and the bidet as much as he does and wonder why we waited so long to install them. And it’s not just in the bathroom, having utensils that he can manage when eating makes a difference on how I prepare food and clean-up after. Forks are tough and can lead to spills, simply switching to a soup spoon has cut down on spills and made mealtimes so much less stressful for us both.

Dressing is challenging for my husband and the tips included finding clothes that work, for us that means loose fitting sweatshirts or t-shirts and blue jeans. I keep all but the top two buttons buttoned on his dress shirts so he can pull them on over his head, an easy modification that allows him to do most of it himself. We haven’t found a good solution for socks but that gives me an excuse to check his feet regularly before putting on his shoes. We have found 2 different styles of shoes that go on easier and don’t need to be tied plus he has a pair of loafers he can slip on and off by himself. 

The most important thing is that the aids we incorporate to help my husband complete his activities should be things that make my life easier too. If the aid/modification/adaptation makes the task more difficult or is something he just can’t or won’t use, then it’s probably not a good fit. I want to make our lives less, not more, stressful and that means finding the right tools and encouraging him to implement them as needed which helps free me up so I can take care of my own ADLs.

For more practical tips on making it day to day, check out Activities of Daily Living | Parkinson’s Foundation or Tips for Maintaining Personal Hygiene with Parkinson’s (parkinsonsdisease.net).

I have been thinking a lot about the progression of my husband’s symptoms lately and I really like to downplay the seriousness of his disease. I mean just because he chokes on his water once or twice a day doesn’t mean he has swallowing issues. His feet do freeze in the mornings, and he struggles with his balance, especially when he’s tired. Yes, he has fallen 3 or 4 times in the past 6 months, but he didn’t break anything so it’s really nothing to worry about. After all, he assures me that he’s doing okay and I can trust him to be honest about what’s going on, right?

Actually I need to step back and look at the situation from an objective standpoint. He is always going to have a positive perspective on his condition because it is necessary. I think that his focus on fighting this disease means he has to minimize the challenges or they could become overwhelming. He is not going to let me in on everything that goes wrong, instead he is going to keep on moving and pretend it is okay. I can join him in that place of denial for a while but at some point someone has to do a reality check and I think that someone is me.

We are at that point right now as we go through annual and semi-annual checkups and assessments. Life is changing, while some of his symptoms are holding steady, others have progressed. I want to support him in his battle with Parkinson’s Disease, but I can’t care for him properly unless I have an eye on what is actually happening. I need to make sure I am grounded in reality so that he can ride the denial wave if that is what it takes for him to live fully with his diagnosis.

This is a tough concept for me. My husband and I married later in life, I was in my 40’s and he in his 50’s. We never had children together, it was always just the two of us. He was, and still is my best friend and for the past two decades we have always done everything together. That is why it is so difficult for me to separate my activities from his needs. I fear that his chronic illness is leading us into an unhealthy co-dependency that will limit both of our lives.

I cannot be his conduit to the world, he needs to be able to communicate and connect with others. Actually, we both need some kind of outside connections and time away from each other could be an important piece of that. So, why do I worry so much when I leave the house and why do I rush to get back? Why do I feel like I need an excuse, a reason to be gone?  Why can’t I just say I need some alone time or time with friends and make it happen? How do I accept that it’s okay to do some things on my own and really know that I shouldn’t feel guilty?

I am struggling with all of these concerns as we begin our search for in-home care. I know that it will be good for both of us to have time apart and yet I am troubled by what that might look like. I don’t know what I am worried about more, that he will hate having someone come in to be with him or that I will. I can’t do it all and I need to stop trying. We are moving on to a different place in our journey that will support and enrich both of our lives and it’s time for me to accept that it’s okay to let that happen. 

It has been an interesting week at our house as I deal with insurance companies, home health agencies and in-home care assessments. They want to know all about what is going wrong, what my husband can’t do anymore. They need to hear about his challenges, not his victories, if they are going to be able to help me with in-home care. It has been tough to live in that zone of negativity as I share the difficulties we are facing in my quest for assistance.

First I had to explain to the home health agency why I was looking for a home health aid and where my husband needed help the most. Next I called the insurance agency to see if they could help pay for the services and spent almost an hour discussing which activities of daily living are the worst and why we need the help. Finally we had a nurse visit us from an agency doing an assessment of my husband’s condition for the insurance company. She was with us for two and a half hours and has called 4 times since in working to complete her report. Again, very negative conversations that leave me wondering if it is all worth the effort just so I can get one afternoon a week for myself.

Today I am going to refocus on what is going right. We have so many good things in our lives and yes, I do get to help my husband with different tasks during the day, but it is what we do. Instead of looking at lists of weaknesses, I am going to make lists of strengths. Instead of thinking about where his abilities are limited, I will think about those things he can still do and celebrate his capacity to continue in this fight. I will recapture my positive mindset so I can be here for him as we negotiate for in-home care, just one more challenge in our on-going battle with PD.

I am working on hiring in-home help and, if someone is going to be here with us, they need to know about our schedule and the typical things we do every day. I am working on a brief synopsis of what a day in our lives looks like. What time do we get up and what assistance does my husband need every morning? How does our day progress? It will have his time schedule for medications and mealtimes. They need to know that he takes his meds by himself but I still standby in case he needs help. I prepare meals and it is important that they know about any allergies or special accommodations for eating, that he occasionally has issues swallowing. I won’t forget to put his naps in the schedule and talk about what I do while he is sleeping. If there are things that vary during the week such as exercise times, I will add a side note indicating those changes.

Once I have a complete picture of a typical day, I’ll turn it over and add a section on what it looks like when things go wrong and how to address that. When my husband is “off” for whatever reason, it can look like he is having a stroke. His left side has always been his weaker side so his mouth will droop, and his gait becomes disjointed. He needs a nap and a chance to reset. If the symptoms persist after he wakes up, then it is time to call 911. I am listing emergency contacts and back-up numbers on the schedule itself along with a note about where additional information can be found.

This schedule will change over time so I am creating it in a word document that can be easily updated. Once I have it done, it goes on the fridge along with his POLST form. Vital information is only useful if it can be accessed so I will be sure to tell anyone who comes in to help where to look and maybe even give them their own copy. This is just one more step in making sure that we have a safe plan for in-home care that works for all of us.