We are starting in-home care today. It will be only a few hours, one afternoon a week. It seemed that it was the right time to make the move so that I could back off a bit on some of the work I am doing and so that my husband could have a new person to interact with on a regular basis. We talked about it and spoke with friends who were already doing it. We worked together to make a plan and a list of things that this person could do that would be helpful. We found a local agency that had capacity and completed the intake. Now comes the hardest part, actually allowing someone else in.

My husband has a difficult time asking me for help so I am concerned that he won’t want a stranger helping him either. We have discussed this and he assures me that it will work, we’ll see. I struggle letting go of control and trusting that someone else will be able to do my tasks correctly. I am reminding myself that it’s time to give some of it up and that whatever they do, however they do it, I will appreciate their assistance. I need to remember that this change is as much for me to have extra time as it is for my husband to have someone who has been properly trained to care for him.  

My husband’s Parkinson’s Disease diagnosis brings with it a regular schedule with lots of structure. That doesn’t mean that we have to remain stuck in patterns that are no longer working effectively. Making changes like having in-home care are big and should not be taken lightly but with proper planning and collaboration, we can manage them. It has been a struggle and we both have had to work through some difficult emotions but I know it will be worth it in the long run. It’s just another sideroad in the journey we share as life continues on.

My husband does a lot of things for himself and I am happy to encourage him as long as he is able to do them safely. We don’t always agree on what that looks like so for many activities I stand close by in case he needs help, on others I am hands-on to make sure he is okay. I know that on some days he is more capable than others so being close and ready to respond gives him appropriate support regardless of his level of need.

One issue that often comes up is what I think he should do versus what he thinks he can do. It must be awful to have to accept help on tasks that he has always done by himself. It must be especially difficult when his body automatically starts the task before he realizes that it may be more than he can handle. I watch him struggle trying to get off the couch or out of the car. Some days it works, others not so much. I would prefer that he let me help him, he prefers doing it himself even if it takes him multiple tries, uses up a lot of his energy, and can put him in danger of a fall.

In those moments, I need to remember to respect his opinion and defer to him whenever possible. I also need to remember that his safety depends on my  responsiveness. This disease and his symptoms are unpredictable and vary by the day, even by the time of day. It’s tough to know where the line for help is when the line is constantly moving. So, I will stay close, help where he lets me, and know that I am doing my best as his CarePartner. In the end it is always going to be a shared responsibility as we both do what we can to make sure he is safe in whatever situation we find ourselves facing.

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.