We have been dealing with changing caregivers and I have designed a spiel to share with them on that first day because what you see when you meet my husband is not necessarily what you get. His appearance can be deceiving and they need to understand his strengths and capabilities which outweigh areas where he may need help. His Parkinson’s symptoms often mask his true persona and I don’t want them to get stuck in a first impression that may not be great depending on the day and what is happening with his medications.

I like to learn about their experiences while also letting them know what they may face in our home. One thing I always ask is whether they have ever worked with someone diagnosed with Parkinson’s. This gives me the opportunity to remind them that everyone with this disease presents differently. The conversation usually starts in our kitchen and moves through the house as I explain the tasks I need help with. We finish in the living room where so we can include my husband in the discussion.

After a brief overview of what we have covered so far I ask my husband if there is anything he would like to add. If he doesn’t mention it, I will share specifics about his situation as they relate to his physical and cognitive challenges and remind the helper that he really prefers to do things for himself. I work to make sure any words I say are respectful and reflective of where he is in this moment while acknowledging the changing dynamic of his condition. I then walk away and give them a chance to figure things out. After all, he is the reason they are here and he is the one they really need to please as they figure out what this job truly entails.  

My husband keeps a pretty set routine so when he says he doesn’t feel like participating in his exercise or PT, I know something is up. We understand that he sometimes has what are referred to as off or low energy days. There doesn’t seem to be a reason for them, they just randomly happen. When one of these hits, it is all he can do to get out of bed. He often recovers by mid-afternoon, occasionally they last the entire day. My challenge is to make sure he is okay while I continue with whatever I have planned for the day. It’s not always easy.

My emotions appear to be keyed into him. When he is off in any way, my anxiety levels go up. He is resting, recharging, and I am amping up from the stress of wondering what I can do to help him. I don’t like to see things going wrong for him without knowing why. The energy drop probably is caused by his Parkinson’s but what if it isn’t? Should I be doing something more? We actually did head out to the Emergency Room once and that turned into a bigger issue for us both. After several hours waiting, it was determined that his PD was to blame. It took him days to recover from the ER visit.

I have found that simply providing a good meal followed by a nice long nap can sometimes reset his body. In the meantime, I try to detach from my worries and move ahead with any chores or plans I have for the day. I don’t leave him alone when he’s feeling like this and may check on him a bit more. If he isn’t better on day two, I call his doctor or take him to urgent care. So far that has only happened once. They were able to determine that he had a mild viral infection and sent him home to rest. Most of the time he is able to acknowledge it as a low energy day and move on. It’s all just another part of our uncertain journey with PD.

I used to wonder why my father and then my husband were afflicted with this disease. It’s a typical response, when bad things happen to yourself or people you love you want to know what caused it. I finally came to the realization that knowing why wouldn’t help us get through. I needed to know how we keep on going, what it takes to fight Parkinson’s, and what they might need from me as they try to live life as fully as possible. The why is something researchers can ponder, the how to move forward is what guides my daily activities and gives me purpose on this journey.

The most important thing for me to accept about this diagnosis is that he didn’t do anything intentional to bring it upon us. It is a disease, it happens, there is no blame or shame here. Was it caused by something my husband used while working in orchards as a young man? Maybe, and we can advocate for pesticides to be banned so that no one else will be exposed. It doesn’t change his trajectory. At this point in time, knowing where it came from is not going to change how his symptoms present or define his treatment plan.

It doesn’t matter why we are facing this challenge, it only matters how I respond to it. My focus needs to be on today, where we are on this journey, and what I can do to make it as good as it can be for both of us. My job as his CarePartner is to remain positive or as my husband says, “focus on what we can do, not what we can’t,” and be grateful for every moment that we have together. I have to keep moving forward with purpose and not let myself get lost wondering why it happened. That train of thought takes me nowhere.

My husband presents with mostly motor symptoms. He has tremors, stiffness, freezing of gait, balance and speech issues. He does have mild cognitive impairment, which may be related to his diagnosis of PD or to his age, he is in his 80’s now. The physical challenges are easier to diagnose and treat. He controls many of his challenges with medication and through deep brain stimulation. However, my father was a classic example of what the non-motor symptoms of Parkinson’s can do to the thought processes of the brain. He was fully engulfed in hallucinations, delusions and paranoia early on. There were no medications to help him find reality in his days and it was extremely challenging for all of us as we tried to make sense of what was happening.

Thankfully, much has happened in the world of dementia and Parkinson’s research since my father was diagnosed back in the 1980s. A lot has been done looking into Alzheimer’s Disease and much of that applies to PD Dementia too. Some of the best work is in recognizing, understanding and supporting mental health for everyone with Parkinson’s and their loved ones. There are medications and behavioral treatments that can be useful for some. Life with PD Dementia or Lewy Body Dementia does not have to be the same nightmare it was for my parents.

The essential component here has to be communication. Even though I know it must be terrifying for my husband to consider what might be coming, I have to be willing to talk honestly with him about his mental health whether it’s anxiety or more serious concerns about dementia. He needs to know that it scares me too. If he does develop hallucinations or delusions, it is not my job to keep him connected to reality but instead to walk alongside him in whatever reality he is experiencing to make sure he is safe and calm. It is my responsibility to let his medical team know what I am seeing. He may not always be able to accurately assess his cognitive challenges, I need to watch and report so the best treatment plan can be created. Then I need to try my best to be patient and understanding as I help him follow it.

For  more information, see the section of the Parkinson’s Foundation website simply entitled Dementia.

I have been dealing with some medical concerns of my own the past couple of weeks and it reminds me that I need to have a good medical team that I can trust just as my husband does. My current Primary Care Provider is a Physician’s Assistant. She is competent but she only works 3 days a week and has coverage from other members of the clinic team when she is not there. It creates a rather piecemeal approach to care and is not really working well for me, yet I don’t know quite what to do.

This situation came to a head last week when I was having a problem with one of my medications and reached out for advice. My regular PCP was not there so I got to speak with one of her covering professionals, a Nurse Practitioner. We had a great conversation and created a treatment plan that included blood tests. When the test results came in, a different Nurse Practitioner interpreted them and made recommendations of her own that were contrary to what I had been told just 2 days before.

I spend a lot of time and effort attempting to make sure my husband has the best care available which can mean that I often don’t have the capacity left to face my own challenges. Yet, if I am not taking good care of my medical needs then how can I be at my best when he calls for help? It has been over a week now and I still haven’t heard a word from my actual PCP. I’ll be reaching out to the office manager later today to see if she can help me sort this out. If not, it may be time to step back and address building a new team for myself, if only I can find the time and energy.

It doesn’t have to be anything serious; I had a head cold last month and since I am my husband’s primary caregiver, he caught it from me. The cough and congestion were minor for me but it could very well have led to pneumonia for him. Would it have helped for me to try to isolate myself from him when we live together in a 1600 sq ft house? That’s doubtful because by the time I realized I was sick he’d already been exposed. I suppose he could have gone into respite, but what else might he have been exposed to in that setting? It’s a complicated situation with no really clear or good answers.

This topic often comes up when I meet with fellow CarePartners. It is not unusual for our loved ones to end up hospitalized when we have an emergency ourselves. I could call our children, but would they be able to provide the care he needs 24 hours a day for an indeterminate amount of time? Respite care might be available if local facilities have bedspace but someone would need to make those calls and arrangements. What is the best way to be prepared when I don’t know what I am preparing for?

One solution for us might be to call the agency that currently provides our in-home care. We have a care manager who should be able to help us figure out what to do. I have a friend who works in placement and she would definitely be a good resource. I know some members of our PD network have made contact with facilities or have already used respite just to find out how it works.

Our first step is going to be to sit down and discuss this challenge openly. Together we can create a plan of action listing contact names and phone numbers. Then I will give a copy of our plan to each of our children with the hope that they never have to use it.

In the process of caring for my husband, I can lose sight of the positive aspects of our daily lives. So many of the things we do have become routine, I can forget what keeps us together in the first place. Dealing with the demands of our current situation can be daunting, however, if I just stop and take a moment to find gratitude for the opportunity to still be with this amazing man, my load lightens. If only I could share those thoughts my message to him would be:

“Thank you for allowing me to come along on this journey, no matter how difficult it becomes for both of us. Thank you for always doing your best to take care of yourself and to continue fighting this diagnosis of Parkinson’s Disease. Thank you for your patience with me when I have run out of patience for either of us. Thank you for trying to understand and accept the challenges I face as I try to help you with the challenges you face. Thank you for loving me even when you may not like me very much because I am too bossy or too grumpy. No one can predict where life is going to take us, I am so grateful that I am getting to share mine with you.”

My husband did not choose this diagnosis, but he did choose to ask me to share it with him. I am honored that he lets me be here and that he accepts me as his Partner. I will try to walk in gratitude for the opportunity rather than frustration that it has happened to us. It’s a tough road, but we can travel it together accepting whatever comes in this uncertain future.

The holidays are over and it’s time to reflect on what went well and what didn’t. Things this year didn’t look like they used to. I could blame this on my husband’s diagnosis of Parkinson’s Disease but that would be a lie. Yes, his symptoms have impacted some of our celebrations, but much of what we do is based on life changes that have little to do with his PD. Family dynamics have changed, we’re both older and not able to do as much, the things we once did aren’t relevant or fun anymore.

Parkinson’s is an easy scapegoat when the actual change agent is reality. So many things we used to do were time consuming and hard work. As I get older, I realize that I would rather spend that time on things I enjoy and find relaxing. Putting lights on the house is a great example. It is a two person job that was usually under my husband’s direction. I’ve been trying to keep it up by myself for a few years but realized that it just may not be worth the effort. To be totally honest, the stress of doing some of these past tasks outweighs perceived benefits and no one notices the change except for me.

The older I get, the less I enjoy big, noisy parties. There is also the reality that we are not always going to be here and our children are going to have to figure out their own ways to celebrate. I think it’s okay for that to start now. Smaller groups in quiet daytime gatherings with less trappings are our new reality and I find that it works better for my sanity. I like having a chance to visit with family rather than spending days cleaning and cooking for them and then a day cleaning up after. It seems our holidays have evolved into a more personal way to connect and isn’t that the most important consideration anyway?

My last message was about a difficult situation I thought I was facing regarding the purchase of a new car. As it turned out, I was the only one making it difficult. I had decided that my husband would want to be involved in the entire process before asking him. I was also convinced that it would be exhausting for both of us and was, perhaps, beyond my capacity to manage. I was so wrong.

When I finally had the nerve to open the conversation, my husband was quick to suggest that I do all of the legwork ahead of time. He didn’t want to visit lots to look at cars, especially since he wouldn’t be the one driving them. If only I had talked to him sooner, I would have saved myself more than one sleepless night and lots of worry. We discussed what we both felt was needed in a new car and I was on my way.

What I hope to remember for next time is that we are going to have to talk sooner or later and the longer I put it off the more difficult I make things. Opening the door to an honest conversation is so much easier when I don’t let anticipation anxiety get in the way or make assumptions on how he’ll react. Starting the discussion in a positive manner promotes a good outcome, lightens my load, and allows us to work more effectively as a team. Isn’t that one of the basics of being a good CarePartner anyway?