Family came over yesterday. We’ve started doing monthly get-togethers, simple dinners and visits to stay connected. It’s a manageable group of about a dozen if everyone shows up, which is seldom. We usually have around 6 or 7 adults and 2-3 kids. This time it was our son and his wife with our grandkids and my stepson, just enough to fit around our dining room table. We meet on a Sunday evening for a couple of hours so as not to wear anyone out. There are no expectations or obligations. People come when they can and leave if they need to, it seems to be working for now.

I originally started these get-togethers because, even though we all live within driving distance, everyone has such busy lives we were only seeing each other on major holidays. As our world started to shrink thanks to Parkinson’s Disease, I felt it was especially important that our family be a part of our journey. These get-togethers are a way to escape the PD world and be part of something bigger as we see our kids and their kids moving out into the world. It’s fun to hear about their adventures and to share in their lives in whatever capacity we can. Those who can’t make it call or text to let us know why they can’t come which keeps all of us connected.

Our get-togethers start at 4 with dinner around 5-ish which fits with my husband’s meds schedule. We usually meet at our house so he is in familiar territory and can rest if he needs to. I try to plan meals that are easy to eat and not too messy so we don’t have a lot of cleanup afterwards. I remember that my husband may need assistance and try to help in a respectful and open way so that everyone can be cognizant of challenges we are facing and overcoming together. Finally, I work to make sure that my husband is included in the fun because Parkinson’s may have slowed him down but he is still here. And he is still a great guy to be around, I want to make sure they all get a chance to know that.

I have a hard time remembering that it is not my job to do it all. I see something that might be a challenge for my husband, so I swoop in and take care of it. I take away his opportunities to try to fix things himself. I would hate it if he did that to me. For me to try to be his buffer to the world also sets up an unrealistic set of expectations that I will be there always and that he won’t have to face any difficulties. This is nonsense and needs to stop now.

We had a situation just today. We were out shopping stopping by a drive through on the way home to pick up burgers for lunch. I ordered his without pickles as I always do. When we got home, he set out lunch while I put away our purchases. By the time I joined him he was a third of the way through his sandwich and found a pickle. I picked up the other burger and, sure enough, it was marked no pickle. I think he expected me to swap burgers with him, but instead I just smiled and proceeded to unwrap and eat the other one. It was obvious he had made the mistake and it was time for him to face the consequences. Eating one slice of pickle is not going to hurt anyone.

We all have the right to tackle our own problems, then ask for help should we need it. We all have the right to complain when things are not going the way we had hoped. He complained about the burger, but by the time he realized there was a problem it was too late for a fix. I could have swapped burgers with him but what does that say about me as a CarePartner? When I take care of everything for him, I interfere with his opportunities for responsibility and growth . A good CarePartner is one who doesn’t try to do it all not only because we shouldn’t, but also because we can’t. Instead, we walk alongside the person we love in the hope that together we can make this journey a little bit easier for both of us.

I recently asked my husband to help me by applying lotion to my back, an area of dry skin I can never reach. He was more than happy to do it, the process feels good, and it gives us a few moments of reciprocity as he becomes the helper and I am the one needing help. It doesn’t hurt that we do it just before bed when I am only partially dressed. These days I like to find that sense of intimacy and closeness whenever we can.

He often needs my assistance during the day, it is nice that I can return the favor by asking him for help in this task. It has become a nightly treat and is bringing some balance back to our relationship. It also reminds me of earlier times when our relationship was new and he would regularly massage my back (and more) for me. What happened to those times?

As his disease progresses, I will have more opportunities to help him with personal grooming. I am thankful that we have found something he can do for me. Caring for someone with a chronic illness can feel unilateral and directed. Having my husband taking care of my back brings a more bilateral approach and a feeling of shared connectedness. I truly feel more like a CarePartner instead of giver when we are both involved in caring for each other.

In order to take care of myself I need to be conscientious about finding time for both of these in my day. It’s tough, and some days are better than others, but I need to remember that I cannot care for either of us if I am exhausted. I need to take breaks and I define those as-

Active recovery- those moments when I am still on alert but able to breath a bit and let my husband manage for himself.

This is a term I hear a lot in exercise programs, that time when I am moving at a lower intensity to restore my body and remove toxins that have built up during intense activities. High intensity sessions are similar to when I am helping my husband with a task or perhaps taking care of something that has gone haywire. Stress levels skyrocket. Afterwards, I really need to let go and take a breath to actively recover. I can’t let go completely because I remail on-guard wondering what will happen next, therefore it is active recovery.   

Rest- when I can actually let go of all of the responsibility whether someone else it there to care for him or he is asleep and I know he is safe. 

Rest often means respite, getting completely away. My husband is still able to be alone for short periods of time which gives me opportunities for respite. I can leave him for an hour or two to go to my yoga class or to go for my volunteer job at a local museum. Even then, I keep my phone close by and watch for texts or calls. My best opportunity for rest is at night because, thankfully, he sleeps very well probably better than I do. I might be lying there awake, but knowing where he is and that he is okay releases me from the responsibilities of care.

Taking breaks is at the heart of my self-care program. Carving out more time for myself is challenging, instead I try to recognize and acknowledge the things I am already doing. I don’t have time for more “me” activities in my day, I just need to be more intentional about the ones I am doing. Recovery and rest, I can do this. If not, I will know it is time to ask for help.

It could have been written for me. Prayers and verses seeking serenity can be traced back hundreds, even thousands of years as philosophers and scholars attempted to find the secret pathway to peace. The current version that is used widely throughout 12 step programs was written in the last century and is attributed to American theologian Reinhold Niebuhr and those working with him according to Wikipedia. Whoever actually first coined the term “grant me the serenity to accept the things I cannot change” could have been living my life, especially since my husband was diagnosed with Parkinson’s Disease.

Enough about the background, how exactly do I see this text as a guide for my life? Acceptance, courage, wisdom, letting go; what a powerful message. It started when I had to accept that my husband was diagnosed with a disease for which there is no cure at this time. Then, I had to find the courage to face it with him and to do what we could to fight it. In my case that means attending appointments, encouraging exercise and providing on-going care. Finally finding the wisdom to know when I need to let go of the battle. I can’t stop what is happening, I can accept and do my best to make it work for both of us.

If you look further, there is another verse to the Niebuhr version. It continues with advice to live one day at a time and accept the hardships we face along the way. It is a very faith-based message, it was written as a prayer to be delivered from a pulpit, however removing the religious connotations doesn’t negate the wisdom in the text. Whatever your beliefs are, religious or otherwise, you have to admit that life is indeed unpredictable and sometimes the only pathway ahead is accepting what we cannot change so we can work on those things we can. Niebuhr finishes with the hope that these words will help him find happiness in this life, isn’t that what we all hope to find?

I won’t include a link to the entire prayer, google can help you find a dozen different versions on a multitude of religious and recovery-based websites. Instead I will share the short version that I found on Wikipedia in the hope that it will help you find inner peace. “God, grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.”

We were talking with one of the many new medical people in our lives thanks to my husband’s diagnosis and I asked about the difference between Parkinson’s and parkinsonism. His response was that parkinsonism, with a little p, is an umbrella term and refers to the broader spectrum of the symptoms. A person may present with PD like tremors, but it is attributed to another issue. A couple of examples that I hear about regularly would be Dementia with Lewy Bodies and Multiple System Atrophy. In both of these illnesses there are notable differences that will show over time which often means that an initial diagnosis of PD may change. It’s another confusing factor we face when caring for someone in this world. 

What difference does it make? Why should I care whether my husband has typical Parkinson’s or one of the other atypical variants? It matters because I need to know what to expect and what should be reported to his medical team. Parkinson’s is such a diverse illness anyway, I need to know what to watch for. My husband presents with all three of the major symptoms of Parkinson’s Disease defined as tremors, Bradykinesia or slowness of movement, and rigidity or stiffness. We know that these symptoms will progress over time and that the medications he takes are effective in minimizing their impacts. This creates my baseline. If he deviates from that, I need to talk with his doctor.

My response as a CarePartner will vary based on which symptoms appear. If my husband should develop one of the atypical versions of parkinsonism, my interventions will need to change. That is why I need to know what is happening and, as much as possible, where it might lead. Caring for someone with PD is an uncertain and difficult proposition, that’s why it is important to arm myself with enough knowledge to at least be ready should things change.

For more information check out Parkinson’s Vs. Parkinsonism on the Davis Phinney Foundation website.

As I write this, I am thinking of my father and his journey with Parkinson’s Disease. It was 30 years or more ago and I was trying to support my mother as much as him. I remember not knowing anything about this disease and feeling helpless as I watched what it did to my parents. They lived in a small town with little or no support other than family. We did the best we could but was it enough?

Had I known then what I know now, I would have been accompanying my parents to appointments and asking questions about Lewy-body dementia. I would have worked harder to find respite care for her and I would have made sure the Dad got out for exercise, walks in the neighborhood at the very least. I would have tried harder to be there for them because I can better understand what they were going through thanks to our current situation.

The most important thing I would have done was to tell my mother that the helplessness and loss she was feeling was okay. She was watching the man she loved going through unbelievable personality and physical changes and could do nothing about it. I would have talked to her and explained that she was doing her best and that she would make it through. I would have explained that making it through probably meant accepting that she would lose Dad, but the reality was that we had already lost him to his disease. I would remind her of the love they had shared for 50 plus years and ask her what Dad would say to her if he were still capable of forming the thoughts and words. I would stress that understanding, accepting, and remembering the love are often the only tools we have to make it through as a CarePartner. That’s what I would have done if only I had known.

I came across a Parkinson’s Foundation podcast on hospital safety recently and it brought out some interesting points. In the podcast, Edie Simpson, a retired neurology nurse talks about how hospital staff who have the best of intentions may not have the best understanding of the unique needs of someone with Parkinson’s Disease. Hospital staff, as well as staff who work in rehab or respite setting, may not speak the same language we do when it comes to PD. For example, telling admissions personnel that my husband takes Parkinson’s medication 6 times a day will probably put him on a pre-set schedule which may or may not fit his actual needs. If I instead tell them that my husband takes his PD pills at 7, 10, 1, 4, 7 and 11, his actual timeframe and the importance of it can be entered into their system.

This would lead into a discussion of his response to the medications he takes and on versus off periods. They will need to know what they can expect from my husband if his meds aren’t working properly. I need to tell them that when he misses his medication his muscles get stiff, he has more trouble communicating, his balance and tremors are worse. The left side of his face and body are more impacted which can mimic a stroke, we don’t want them rushing him to the ER or giving him other meds that might make things worse. It may be necessary to give them the list of medications that are contraindicated for people with PD to ensure this doesn’t happen.

Finally, I know how difficult it is for my husband to ask a stranger for help especially with the more delicate or personal tasks. It’s much easier for me to have an upfront conversation to explain areas where he will definitely need help and those where he may need assistance. I also need to share any tips or special accommodations we are using that he might need while he is away from home. They also need to know those areas where he is fully able to care for himself so they can know when to step back and let him be.

For more visit Episode 76: Practicing Hospital Safety | Parkinson’s Foundation on the Parkinson’s Foundation website to hear Edie Simpson, a retired neurology nurse from the Muhammad Ali Parkinson Center, describe how hospitals typically operate and explain why we must educate hospital staff to ensure the best care possible.

For a current list of medications that People with PD should not be taking visit https://www.apdaparkinson.org/wp-content/uploads/2018/05/APDA-Meds_to_Avoid.pdf.

My husband has this disease and the only thing that helps slow the progression is to exercise. Why should I have to exercise too? Because even if I don’t have a specific diagnosis, aging is going to take a toll and the best tool to fight muscle loss and brain fog is, you guessed it, exercise. I need to be active as much as he does if I want to have a good quality of life when I am older.

I like to couch surf as much as anyone else and wish I could say that I am making this up but I am not. Check out this webpage on the National Institute on Aging called Real-Life Benefits of Exercise and Physical Activity. Here they clearly define the advantages of working out and share videos that talk about the 4 types of exercise I should be doing and why. There is another video that addresses the benefits I can get for my mental health from being more active.

I often stress that I need to stay healthy so I can take care of my husband but the reality is that I need to stay healthy so that I will be able to take care of me. I expect him to do everything he can to fight his disease but am I doing everything I can to combat aging? I want to live independently as I age and the key to being able to make that choice is in my hands now. I need to commit to exercising either with my husband as his PD coach or on my own. I think of the saying “use it or lose it.” I certainly don’t want to lose it so I think I’ll start using it more now so I will have it to use later.

I can build it, but that doesn’t mean he will use it. We had a lovely barrier-free shower with grab bars installed in one of our bathrooms. My husband tried it once and decided he doesn’t like it. He prefers the old shower in our master bath.

Take advantage of help when it is available. After years of doing all our yard work myself I finally hired someone to help me. It has lifted a burden and has the added benefit that I am supporting a local business.

Be open to new ideas when seeking solutions for challenges I face. We needed a new toilet and the model at the store had a bidet toilet seat installed. I had never considered a bidet for our personal hygiene needs. After seeing how it worked, I bought one and we both use it daily.

Plan carefully for travel but be ready for plans to be disrupted at any time. We flew to Hawaii in September. I had scheduled flights that fit our needs perfectly, the airline changed them. I had spoken with a hotel representative prior to our trip and thought I had covered all issues, the room was great, the bathroom was not. We made it work.

Know when to “lean into” something and when to “lean on“ someone else. Leaning into something is defined loosely by urbandictionary.com as owning a challenge, accepting the task and then doing it with confidence. I need to remember that I have a people both in and out of the PD network who are here for me. I don’t have to lean into everything, I can choose to lean on others in difficult times.

Live each day with gratitude for what I have not regret for what I have lost. I will celebrate what is going well with the understanding there will be loss along the way. Grief is a natural part of the caring process but wallowing in sorrow wastes my energy and I don’t have that much to spare.

Life is short. Hold the ones you love tight and make sure they know you care. Need I say more?