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.

When I was a child, one family doctor took care of all of us and handled any medication requests. All of our prescriptions were processed through the local drug store and my mother had to drive down and physically pick them up. Our pharmacist knew everything we took and could advise us or check with our doctor if he felt something was off. It was a very personable system.

Nowadays some prescriptions go to a mail order pharmacy, some are filled at a large chain drug store, and we buy supplements alongside our groceries. The pharmacists don’t know us, see only a portion of what we take and don’t have a clue what additional stuff we might be putting into our bodies. We both see multiple doctors who write prescriptions for different complaints without necessarily checking our current meds list. How can anyone possibly give us good advice on taking medications without having a complete picture?

It seems that the answer is me. I need to take responsibility by doing my research and asking the right questions of the right person at the right time. I am lucky because my husband maintains his own list of medications and shares it with his medical team. He is cognitively aware of what he takes and how it makes him feel. Still, I need to know the basics and when a new medication is added I need to double check to make sure it is safe. I can take advantage of the moment to ask the doctor if there are any known contraindications with any of the other medications on our list. I can follow up with the pharmacist when I submit the prescription, knowing that they may have limited time to speak with me.

I need to understand why each medication is being prescribed for my husband, what the expected outcomes are and what a negative reaction looks like. If I do all of this and still have questions, maybe it is time to find an independent local pharmacist and request a consult. If I share the entire list of medications and supplements with them, they should be able to help me understand any potential issues. Then I can truly say I am managing my husband’s meds. 

Acceptance is tough. I didn’t want to accept that my husband had this diagnosis, so I insisted that we seek a second opinion. I still struggle daily with accepting the changes this diagnosis has brought to our lives, especially our social life. We are 14 years into this journey and have had to make many accommodations, no more late nights out, no more dancing, no more hikes or even walks along the river. Trips are limited as we find that this disease has built a framework that our days must fit within. But I have figured out that accepting doesn’t mean giving up or giving in, it just means being open to a different pathway with new challenges and new adventures.

Maybe we can’t have the dinner parties with friends that we once enjoyed, then we invite them to join us for lunch. It’s too cold to sit outside around our firepit like we used to, let’s plant flowers in it and sit beside it on sunny days instead of fall nights. Old friends may not know how to interact with our new reality so we begin to find new friends who understand because they face similar situations. We do what we can to maintain the old friendships because of the history they bring but we open our hearts to the new people because they represent our future.

Acceptance for me has meant that life is very different than I expected but that’s okay. I love my husband and I love our life, challenging as it may be. I know that he would have stood by me so I will do my part to stand by him. Things are going to get tougher and we, I will figure out how to make it work. It is tough but it’s worth doing so that we can move forward together on this journey Parkinson’s Disease has chosen for us.

I often hear the saying brain “motion is lotion” referring to exercise and always equated it to keeping joints healthy so bodies could move. I was reminded recently that not only is exercise important to support mobility, it is also vital for brain health. Movement in the lower body increases the flow of blood and oxygen and effectively lubes the brain. Tests have shown that moderate exercise on a regular basis supports neuroplasticity, the brain’s ability to build new neural networks and connections. Something as simple as taking a daily walk can lower levels of stress hormones in the brain and help alleviate anxiety. Physical activity is directly linked to brain activity and brain health.

My husband’s brain is the control panel for movement. If he wants to be able to take those daily walks, he must actively practice them. Parkinson’s Disease comes with bradyphrenia, a slowing of the processes in the brain. His brain has to break down what were once the most simple of tasks. He has to tell his left leg to move or his right arm to swing, nothing is automatic. It can be exhausting but exercise can give some relief as it moves refreshing fluids and oxygen into the brain and actually encourages brain growth.

Our brains are in constant movement, they have to be or we would die. Physical activity, whatever that looks like, helps build stronger brains that can support even more movement. It’s an ongoing cycle of essential effort that keeps us healthy and gives us a chance to win against diseases like dementia and yes, even stave off Parkinson’s. Exercise is the key, we all need to make use of it.

For more on the connection between movement and brain health check out How Exercise Protects Your Brain’s Health – Cleveland Clinic or Exercise, Movement, and The Brain | Psychology Today.

I was at breakfast with several other CarePartners yesterday and it is always interesting to hear how similar many of our challenges are even though our People with Parkinson’s are at different points in their journeys. I hope they don’t mind if I share some of the comments I heard yesterday, I think they may resonate with the greater community. 

“He needs to know where I am at all times and often follows me around which can be too much.”

“I want to let him do things for himself, but it just takes so darn long!”

“I have to take care of my house, my yard, and my husband. How do I keep up with it all?”

“I feel bad when I hear myself constantly telling him to stand up straight or speak more clearly. I know he can’t help it.”

“We’ll be walking along and he just stops, his feet freeze. I feel guilty because I don’t realize what has happened and have left him standing there more than once.”

“I need to find a way to get away for myself because it wears me out being there 24-7.”

My life as a PD CarePartner is difficult because I see my husband struggling with challenges outside of his control and want to help, but there is not a lot I can do. I know this yet it still haunts me. Why us, why him, and yes- why me? One of the things that does keep me going is the knowledge that we are not alone, I have a whole network of people I can turn to when my patience with this disease is wearing thin. I also know that there are some very good researchers out there in the world looking at ways to make our lives easier. I know that we are strong and resilient; we can make it through. Most of all, I find comfort in the knowledge that we are never alone in this fight.