There are things I just can’t do. Then, there are things I can do but shouldn’t. Then, there are things I can do and just don’t have time for. Finally, there are things I can do, should do, and make a priority so they get done. More and more this last category involves finding people to help with the things in the other 3 categories. Since organizing things is one of my strengths, that works out well. I am good at finding jobs for other people to do, as my husband will tell you because he used to be the one who got to do them all.

This comes to mind today because I have a crew coming to clean and treat our roof for moss. They’ll be checking the gutter guards and cleaning those too. This all used to be within my husband’s control, which is surprising since he is afraid of heights. Yet he did it because it needed to be done and because I asked. When it fell to me, I tried cleaning gutters once and decided to make some changes. Hence the crew coming today.

When my husband was first diagnosed, we shared the work involved in caring for our home. Since then, most of that has fallen to me. I know that one person cannot easily or safely do the work of two which is why I have to be realistic about how many additional chores can be added to my list. If I am trying to do it all, none of it gets done well. If I am distracted by other tasks when I should be focused on my husband, I am not able to give him the care he deserves. It’s a delicate balance, but I know I would rather err on the side of working with him than doing home maintenance. Maybe it’s not such a difficult choice after all?

I wrote recently about a tip I picked up from a Davis Phinney webinar to replace the word guilt in my dialogue with the word regret. Saying that I regret my husband has Parkinson’s Disease and cannot do everything he used to, encourages me to let go of feelings of guilt around the fact that I don’t have the same limitations. It’s been difficult to make the change to my internal dialogues yet I think that it may be helping which makes me wonder, what additional changes could I make?

I think particularly about those words that I hear over and over in my mind. Things like disappointment in myself, frustration, crankiness and random thoughts around my capabilities, meeting personal needs and inadequate self-care. All this negative self-talk is destructive to my well-being. What if I found a way to define my thoughts that was kinder to me and better reflected what I am feeling? As an example, I wonder if instead of worrying about meeting personal needs and self-care, I try being more self-aware in each moment and respond in kind. Having an awareness that certain activities centered on me are necessary as I move through my day, and it’s all okay.

And those other words, getting rid of disappointment could open a chance to look for more realistic expectations. I am already changing capability to capacity because being able to do something doesn’t always mean I should tackle it unless I actually have the time or energy for it. What if I took a minute to redefine the frustration and anger I often feel as bewilderment, why is this happening to us? And that good old crankiness that happens sometimes? Say what it is, I’m usually either hungry or tired, then do something about it.

Determining where those negative feelings about myself are actually coming from can let me short circuit those signals. I am always doing my best in this role of CarePartner and I need to acknowledge that even when I am only talking to myself.

I had what I can only call an “angry” day recently. I don’t know what brought it on and, at the time, didn’t know how to change it. What I did know is that I needed to do my best to keep it to myself and not take it out on my husband. Even if the anger might have somehow been related to something he had or hadn’t done, unless I could define what was causing it, I didn’t need to share it with him. Unfortunately, that is easier said than done. The anger inside was constant and flared into every interaction we had. It didn’t involve cruel words or loud voices, but my answers were curt and my mood remained dark for most of that day. My husband recognized it and steered clear of the stormy waters.

Looking back I can see that my anger was probably caused by lack of sleep. I had two or three restless nights leading up to that incident. It was also one of the hottest days of the summer so I wasn’t able to go outside and take a break. We’ve been dealing with extra medical concerns for my husband which always brings added stress. We’re getting ready to do some work on our house, again added stress. There were a lot of potential causes and it all just piled on and had to go somewhere.

Thankfully I recognized my toxicity and was able to keep my distance for most of the day. I was there when my husband needed assistance, otherwise I let him be. I wrote in my journal, which released a bit of the tension, and spent a lot of time reading, isolating myself and allowing the anger to try to work itself out. By the time we went to bed, things had calmed and I was able to get a good night’s sleep. I woke to a fresh spirit, ready to face the new day with a calmer and happier attitude. Angry days will happen, hopefully not too often, and my best approach appears to be to accept and let them work themselves out. My primary role may be CarePartner, but it’s important to give myself the grace to just be human sometimes too.

When my husband was first diagnosed with Parkinson’s Disease, I started hearing about this team we needed to create to support him. We were told his team should include a medical doctor, a neurologist, a speech and language pathologist, a physical therapist, an occupational therapist and even a social worker. I expected this team of professionals would come together in a room and discuss my husband’s diagnosis with us, I couldn’t have been more wrong. The reality is that he needs to have access to each of these specialists, but expecting them to communicate regularly about his situation isn’t reasonable. His team members are there when he needs them, but not all the time.

This team of professionals has the task of providing care for my husband, they’re not here to support me. I am considered a resource of information regarding his condition or perhaps a helper they can recruit, not an individual facing challenges who might also need consideration or assistance. What I have determined is that if I want to ensure my needs are meant, I must design and create my own team. I have to define who, professional and otherwise, will enable me to keep going in my life as my role of CarePartner becomes more intense.

It took me years to figure this out, but now I feel I have a pretty good team of my own. It includes my primary care doctor, my mental health therapist, a yoga instructor who helps keep me calm and fit, my family who are always here for me, even the people who help with lawn and home maintenance. The most important component is the support network of friends I have found within the Parkinson’s Community. They are here for me whenever I feel like I am struggling and give me the strength to face each day. Just as my husband shouldn’t be facing his journey alone, neither should I. Now, thanks to this amazing team of people, I won’t.

My husband is seeing an orthopedic specialist, or “back guy” as he likes to call himself, for chronic pain. He is also seeing an Ear, Nose and Throat specialist for vertigo. This is all in addition to his normally scheduled care with his Neurologist and his Primary Care Physician. We had 3 appointments last week alone, it can easily become overwhelming trying to keep up with his care needs. How do I prioritize it all to make sure he is getting the best care possible?

First, I need to make sure that everyone he is seeing knows he is seeing everyone else. In simpler terms, I need to make sure the back doctor knows about the ENT and vice versa and that his Neurologist and PCP know about all of them so someone can, hopefully, be on top of his care. The reality, however, is that I am very possible the only one who is aware of everything we are doing at any given time so I need to watch for possible conflicts, complications and opportunities.

Which leads me to my dilemma, how to decide which comes first? My solution is really quite simple, I attend every appointment with him and ask stupid questions. Okay, maybe they’re not so stupid but more simplistic. As an example, we were at the orthopedic office and I asked whether PT might help since he has been referred by the ENT for balance issues. He gave us a referral for back issues and suggested talking to the PT so they could figure out a plan that might address both. This was something he hadn’t even thought about until I mentioned it, an opportunity almost missed.

There are a lot of decisions that I face on this journey, finding good treatment options may be one that should be handled by professionals. Obviously my husband and his comfort level will always be a factor in determining what comes next, but it might be useful for me to step back and let the medical team do their job. My role may be simply to keep them informed and ask the right questions so that we can all be working together on the best possible plan moving forward. Maybe this is a decision I can provide input on, but don’t actually need to be making.

At this point in my husband’s journey, I figured we were pretty well set. I have been studying PD for the past decade and thought I  could see the direction we were headed. His symptoms were progressing slowly but not really changing. Then he went to bed feeling a bit “wobbly” on a Saturday night and woke up Sunday with full-on vertigo. I knew how serious it was when he willingly took to his walker.

What I have since learned is that approximately 10% of People with PD will develop vertigo, mostly in the later stages of their journey. Interestingly enough, the Parkinson’s Foundation sent out a podcast on vertigo just a week after he started experiencing it. According to them, the first step is to differentiate from neurogenic orthostatic hypotension which is indicated by dizziness or lightheadedness created by fluctuations in blood pressure. My husband was not lightheaded, but had the sensation that the room was moving around him. According to the Parkinson’s Foundation article, causes can include medications, a viral infection, an inner ear disorder or even a stroke.

He has seen his Primary Care Doctor and an Ear, Nose, and Throat specialist(ENT), both suspect it is Benign Paroxysmal Positional Vertigo and have referred him for further testing. The challenge is that the treatment for this disorder involves quick movements of the head to realign crystals in the inner ear canals. At this stage of my husband’s journey with PD, nothing in his body moves quickly. The ENT also recommended physical therapy and has referred him to a PT who specializes in neurological conditions. I’ll be scheduling an appointment for him there as soon as possible.

In the meantime, he keeps his walker close by. The episodes of vertigo come and go and usually only last a minute or two. It is limiting some of his movement, but he has been able to keep up with most of his exercises with modifications. And, I remain ever vigilant, making sure that he is steady and stable and keeping an eye out for those off moments. Vertigo can lead to falls, we definitely don’t need to add that to the mix.

For more on vertigo and PD, check out Vertigo, Dizziness & Low Blood Pressure on the Parkinson’s Foundation website.

I was with a group of friends the other day and the topic of exercise came up. The general consensus was that everyone hated it. I kept quiet because, thanks to my husband’s diagnosis of PD, I have come to  understand the value of exercise and, while I may not always enjoy it I work out with him at least 4 days a week. It is one of the few things we can still do together, in many ways it replaces our dancing and the hikes we used to take.

We subscribe to a Parkinson’s program and the coaches all do their best to make the sessions fun. They play oldies music we recognize which makes the hour go by quickly. The classes are through zoom, but the coaches make a point to call out class members and encourage them individually. They share jokes, highlights of their lives and work to build community within the on-line format. They also adapt the programs to meet the needs of a broad group of people with a variety of abilities. My husband works out from a seated position, I can do the same moves standing and get a great workout too.

At a time when my husband and I seem to be losing so much of who we were, it is nice to have something new that connects us. We box together and lift weights. We can talk with and about the coaches, we can complain about sore muscles when we’ve tried too hard. We are both exhausted after a really good session. It’s an activity that we share that is healthy and adaptable. I don’t love exercising, but I do love spending time with my husband. When I look at it from that perspective, I really don’t mind it so much at all.

I was reminded of this just this morning. I went outside to check on something and my husband followed me. Not realizing he was there, I turned quickly and almost knocked him down. We then got stuck in the doorway trying to maneuver backwards to a safer location. It is amazing how many new potential falling hazards are located just outside our backdoor. The warmer weather draws us both outside where the ground is not as even nor as familiar to either of us, and that is just at our home.

In addition to an increased risk of falls, the sun is more intense and the medications my husband takes for his Parkinson’s Disease make him more susceptible to burns. This disease interferes with his ability to regulate body temperature and he overheats very easily. His challenges with swallowing often mean he doesn’t drink enough water and, as things heat up, dehydration becomes a greater concern. I love the long days of summer, however, the prolonged light does seem to impact our sleep patterns. We close the blinds around 8 pm to give our brains the idea that it’s getting dark outside, I’m not sure that is going to work. And, our cat is very much dependent on the rising sun so she comes in to wake us around 5 these days.

We are finding ways to enjoy our summer without overdoing it. We have set up two separate areas on our patio, one in the sun and the other in the shade so we can enjoy being outside regardless of the time of day or weather. I minimized obstacles outdoors and strategically placed seating so my husband can easily access it. We try to take short walks in the evening, once the heat of the day has passed. Summer can still be fun as long we keep it hydrated, keep it cool, and always keep it safe.  

It has been a tough week at our house and we are finally getting back to what feels like a more normal space. The reality, however, is that our current normal is very different from what it was just a year or two ago. It feels like each time we go through a tough time, we come back just a little bit further down the road. We adjust to the new routine and keep on going. It’s like we’re on a roller coaster and each time we come down from the highs, we go just a tiny bit lower. The changes are so small, I don’t even notice until I stop and look back at where we’ve been.

We were talking about this at a recent CarePartners breakfast. We all do what needs to be done to keep things going. We step in and help with personal care, with home care, with finances and medical care. When my husband got sick or had a fall, I was suddenly called upon to do even more. As he recovered, those extra duties often stayed with me. I adapted to the new normal and what had been a bad day became just another day.

It’s hard to remember the days before and perhaps that’s okay. If I don’t reflect on how it was, then I don’t feel the loss. It is easier for me to focus positively on what we still have as we move ahead. My role is changing, I feel I am spending more time these days as a caregiver than as a wife, but that may be how it has to be. One of the CarePartners at the table had a great perspective. She talked about “good” days and “not quite so good” days. I think I need to adopt her perspective as I accept and appreciate the new normal in our lives.