It is summer and I wanted some fresh berries to eat. We visited a local fruit stand, but they were all out, so my husband suggested we go to the local farmer’s market. I have been avoiding this because it involves a lot of walking, there are crowds, it is noisy and can be very stressful. I was sure it would be too much for him to handle but, in reality, I think I was more concerned I wouldn’t be able to handle it. The “what ifs” took over in my mind, especially “what if he falls?”, and made me afraid to even try. I didn’t say anything to him, there have been enough conversations with me telling him what I don’t think he can safely do.

Sunday morning arrived and I asked if he was still interested in going to the market. He said yes, so I set aside my concerns and we headed out. He took his walking stick along as an aid, the first time he had used it in a public setting. We found parking less than a block from the market, walked the entire length of stalls, bought our berries and made it back to the car without any problems. We had lunch at a new restaurant on the way home and then my husband took a nap. It was a good outing with a positive outcome and none of the “what ifs” I had stressed about ahead of time happened. All my worry turned out to be nothing but a waste of energy!

My husband knows his body better than I do. Thankfully his cognitive skills are still intact and he has a pretty good awareness of what he is capable of doing, or at least trying to do, safely. He knows whether he is having a bad or a good day and will tell me. I need to listen to him when he says he wants to do things and, within reason, let him try. I am always there ready with support or supervision. He would have missed out on a chance to try out his walking stick and we would have missed out on some terrific berries if I had overruled his choice. I’ll always worry, can’t help that, but I am going to try to listen a little better too.   

Summer weather is supposed to make us all happier and send us out of our houses to play but unfortunately, those of us who are providing care 24/7, it isn’t that simple. My days as a CarePartner are full year-round, how do I find time for anything more just because it’s sunny and warm? Summer brings a truckload of additional chores and opportunities. Daylight lasts longer which makes me want to do stuff outside, but when do I get the inside stuff done? How can I balance enjoying summer and taking care of chores without exhausting myself?

The seasonal change impacts my mood. Where I should be happy and light, I often find myself stressed and grumpy, worrying over the things I don’t get done. And, I have to admit that sometimes the sunny days accentuate my feelings of loss for the fun things we used to do. We have yard games that we used to set up, they are all in our shed having become too challenging. I see our neighbors going camping. Friends talk of trips they are taking and, to be honest, I am jealous. My husband’s Parkinson’s Disease has changed how we spend our time and it often seems like all work and no play.

Summers will look different thanks to my husband’s diagnosis, but that doesn’t mean I can’t still find ways to enjoy them if I try. I hired someone to help with the yard work and I am learning to ignore the weeds. We take short day trips instead of going camping. I barbecue a lot and we eat our meals on the patio. If I adjust my expectations, I can find joy in the little moments we do have together. I can treasure memories of past summer adventures while still managing to create more, perhaps not as monumental, but just as good. 

Sometimes we get so caught up in all the necessary trips that we forget how much fun just taking a quick day, or even afternoon, trip can be. Escaping the obligatory routines for just a few hours, whatever that might look like, can be so rewarding. It is more work getting in and out of the car now, but I find that it is well worth the extra time spent, especially when we visit places that hold personal memories.

The past couple of weeks have been stressful with a trip to the ER and then follow-up appointments to try and figure out what was wrong. I needed a break and was really missing weekend trips we used to take either to the mountains or the beach. I turned to my husband and said “we’re going somewhere today; I don’t care where.” and he suggested the waterfront. We are lucky to have a river that is a short drive from our house yet seems to be a world away from our daily lives. Once we got there, we took a walk and found a bench that overlooked the river. We watched people fishing, swimming, sunbathing and picnicking, all things that I used to do when I was younger. Pleasant memories were triggered. The water was soothing and there was just enough of a breeze blowing to keep things comfortable. We may have stayed only about 20 minutes, but I felt as refreshed as if we had spent the entire day. It was great.

I am finding that 2-3 hour trips can be as good as 2-3 day trips used to be. Getting out of the house to go anywhere takes me away from the duties of CarePartner and helps ease the isolation we both feel thanks to my husband’s diagnosis. And, did I mention that we stopped by an ice cream shop on our way home? A perfect conclusion to a perfect little break, I think we need to do this more often.

My husband has been taking carbidopa-levodopa, also known as Sinemet, for 12 years now. It is the primary medication for everyone who is diagnosed with Parkinson’s Disease, but why? What exactly does it do to his brain and what could go wrong? Also, with so many different presentations of this disease, how can it be that one pill fits all? To get answers to these and other questions, I visited the internet, or more specifically Medline Plus provided by the National Library of Medicine, where I was able to search for the medication by name.

First, I need to understand that all the different challenges of Parkinson’s Disease are thought to be caused by a depletion of dopamine in the brain. I find it fascinating that a deficit of one chemical in the brain can result in such a variety of physical and cognitive symptoms. Dopamine is a neurotransmitter that works to convey messages between other parts of the brain. It makes sense that if the messenger is broken signals go haywire and all systems are impacted. This medication works because Levodopa converts to dopamine in the brain and carbidopa keeps dopamine from being broken down before it reaches the brain. Levodopa has proven to cause nausea so combining it with carbidopa allows for a smaller dosage and less complications. My husband takes 25/100’s which means he takes 25 mg of carbidopa and 100 mg of levodopa with each tablet.

The tablets worked well at first, Then, as his symptoms progressed, they became less effective and he chose to have deep brain stimulation surgery. He still takes the medication, but not as much, which is good because some people have found that prolonged use of carbidopa-levodopa can lead to uncontrolled movements called dyskinesia or other complications. It can cause obsessive behaviors, some of our friends have gotten very interested in gambling or shopping thanks to their meds. The medication has always made my husband sleepy and mildly impacts his cognitive abilities. He sometimes says he feels fuzzy headed when he takes it. We can deal with a fuzzy head occasionally as long as it is working to help control his tremors, at least until something better comes along.

For more on dopamine see Dopamine: What It Is & What It Does (webmd.com), and to read the entire article on carbidopa/levodopa visit Levodopa and Carbidopa: MedlinePlus Drug Information.

We went to dinner at a local winery last night. It felt so good to be “out on a date with my best guy” and to let PD stay at home. The meal was served outdoors with a lovely view of mountains in the distance and the weather couldn’t have been better. We enjoyed live music, good food and wine. It reminded me of other times and other locations before his diagnosis.

There were some accommodations we made to the evening. Outdoor seating is always interesting, so we looked for the best option with somewhat stable chairs that he could easily navigate. We chose a small table that could be moved into position after he was seated. Dinner was a plated buffet which meant that we had to carry it to the table. I picked up food for both of us. When we were ready to leave, I moved the table out of the way and helped him to his feet just as we often do at home. I try to present my assistance as unobtrusively as possible, minor adaptations that don’t create a fuss, and it all worked.

If I had asked my husband ahead of time whether he wanted to go to the winery, chances are he would have said no. Often just the thought of doing something different exhausts him. Instead, I bought tickets on-line and then told him about it. There is always a chance he could be having a bad day and we would have to cancel, but it’s worth the risk because getting out of the house feels so good. Once we were back home and settled, he turned to me and said “Thank you for dinner, it was fun”. I’m already looking for tickets for our next outing.

We still eat many of the same foods we did before my husband was diagnosed with Parkinson’s Disease, but I have learned to think differently about how to present them. Taking a few extra minutes in the kitchen before the meal saves so much time and frustration once we are at the table. And yes, I have become the primary cook, but that doesn’t mean we don’t still share responsibilities for planning meals and clean up after. It just means that we choose the safest options for us and what works at this stage of our lives. Here are a couple of the tips that I have learned in my role as CarePartner/Cook, I hope you find them useful.

As his disease progressed, my husband’s ability to use silverware regressed. Handling a knife and cutting meats at the table became difficult. Now whenever I make something like a beef roast or grilled chicken, I slice it thinly before putting it on the plates or break it up into bite sized pieces. I do this for both of us, I don’t want his plate to look different from mine. Any leftovers go alongside bite sized veggies into a quick and easy (and healthy) stirfry.

My husband loves spaghetti. Unfortunately, his diagnosis of PD means that it has become an almost impossible task to get the pasta from his plate to his mouth. I tried breaking the noodles into smaller pieces before cooking them or cutting it up once they were on his plate, all to no avail. Then, last week we were perusing an old cookbook and came across a recipe for Spaghetti Pie. By precooking the ingredients, adding a couple of eggs to the pasta and layering it all in a casserole, we suddenly have spaghetti that he can manage with a fork. It was genius!

There are tons of recipes for Spaghetti Pie on the internet, here’s a link to one to get you started Spaghetti Pie I Recipe | Allrecipes.

If I was a paid caregiver, I would have scheduled breaks and I would get in trouble for not taking them. As an unpaid CarePartner, I only take breaks when things really get crazy and I am usually already in trouble either mentally or physically. I’ve been thinking about this a lot lately, especially when I found myself craving a cigarette. I don’t smoke but was thinking that if I started it would give me an excuse to go outside by myself for a few minutes every 2-3 hours. That’s when I realized that I don’t need an excuse, I just need a boundary and a schedule.

I am not sure that it is all about being a CarePartner, I think it may also have to do with being retired and together 24 hours a day. At any rate, I need some private times somewhere in my day. I need to be able to say to my husband “I’m going outside to take a break”, and then let go of everything for a few minutes. Or, during bad weather, I need an alternate location in our home that becomes my break room. And I need to remember that breaks are not times to do chores, they are times when I can sit down with an uninterrupted cup of coffee or a glass of tea and shut out everything else.

As far as scheduling breaks, it may not be possible but I think I’ll try. I need to take a break in the morning and one in the afternoon. My morning break can be right after breakfast, I love sitting on our patio with my coffee and listening to the birds. We take a break together mid-afternoon. Perhaps I can find a few minutes of quiet time in the early evening while he is watching the evening news and before I start preparing dinner. The key is that I need to approach it with the right mindset and actually do it. Letting go may take some practice but, with time, I know I will be able to get those much-needed breaks and still be here for my husband when he needs me. 

Medications are a constant part of my husband’s treatment for PD. He takes pills every three hours and missing a dose can throw him off for the rest of the day. He carries his PD pills with him and has an app on his phone that reminds him when it is time to take them. The app shows him what the pill looks like, tells him how many to take and beeps until he shuts it off. It works well for us because I also hear the reminders and can help if he needs it.

I have a friend whose husband also has Parkinson’s alongside a whole slew of other issues. His medication schedule is much more complicated, and she has to set his pills up daily for him to take. He is also having problems with swallowing, so she mixes the meds with applesauce for him to get them down. His medication schedule interrupts her day, but she has found that taking on the responsibility of making sure he takes his pills is much better than finding them still sitting on the counter hours later. He needs his meds, she needs peace of mind, taking the lead in giving them to him meets both of their needs.

While I haven’t had to take on the responsibility of meds management, there are other tasks that I do for my husband on a regular basis. Some involve dressing, some involve personal grooming, a lot involve the day-to-day stuff like making phone calls or preparing meals. I could push back and wait for him to do these things himself, but the safest and most efficient process has simply become for me to help. Being a CarePartner impacts my life, but I can limit those impacts by accepting that there are things he can’t do anymore. Rather than worry about them not happening, I simply need to step up and shoulder those tasks for both of our sakes.

Two things have happened recently that are telling me it is time to look for a new neurologist for my husband. First, she is moving her offices. We will have to drive an additional 20 miles through city traffic for his appointments which more than doubles our travel time. We chose her originally because of the close location and now we will be going back to the same place as before. My second concern is that, following a visit to the ER, it took her office a full week to find a time when she could speak with him. I get that she is busy, but we were told to see her as soon as possible. If this is the best they can do, perhaps it’s time to look elsewhere?

My husband, on the other hand, doesn’t like change. I know that a piece of his reluctance is his disease, but he really has always been like this. A few years back, he had to change PCP, neurologist and PT all within about a 6-month period and it was extremely challenging. He likes having a connection with his providers and knowing that they are aware of his particulars and peculiarities, something that takes time to build. He is willing to stay with the current neurologist and follow her wherever she goes so that he doesn’t have to break in a new doctor.

So, here we are, on opposite sides of the fence. I am looking into options and talking to people so we can have an informed discussion. I realize that if we decide this is the correct move, finding the right doctor isn’t going to be easy. We can’t interview neurologists to make sure they are a good fit, we have to depend on what others say and hope for the best. I did check the Parkinson’s Foundation website where I found an article entitled “Finding the Right Doctor” which will help guide us through the process. They stress that the neurologist needs to be someone you are comfortable with because you are embarking on a long-term relationship. “Having a positive relationship helps keep lines of communication open and ultimately is good for your health”, referring to the person with PD. And, might I add, it’s also good for my mental health as his CarePartner.

I subscribe to WebMD’s daily newsletter that comes via email and a recent article entitled “Do Optimists Live Longer?” caught my eye. The authors based the article on a study that followed 160,000 women and found that those who were most optimistic, or as they describe it “see the potential for positive things to happen in the future”, lived 5.4% longer than their pessimistic peers. This made me wonder how it could relate to my role as a CarePartner? It’s tough to be optimistic when you are caring for someone who has a progressive illness. So, I decided to take a look at my favorite resources, the Davis Phinney and Michael J Fox websites, to see what they have to say on the topic.

Connie Carpenter Phinney is very active in her role of CarePartner and co-founder of the Davis Phinney Foundation. Her approach is to “mindfully practice optimism”. She acknowledges that negative things happen but uses them to prepare for what might be coming. For more on Connie’s technique, check out What I Have Learned as a Parkinson’s Care Partner on the Davis Phinney Foundation website.

The Michael J Fox Foundation focuses mostly on research, yet I found this great quote from Michael on the very first page “To me, hope is informed optimism.” There is no better place to get updated, and hopeful, information about PD than on the MJFF website. Looking deeper, I found a tool for CarePartners written by Lonnie Ali regarding her journey with husband Muhammed Ali. She writes of how important it is “to keep a positive attitude and sense of humor”, another great definition of optimism. To see the rest of what she has to say visit You, Your Loved One, and Parkinson’s Disease on the MJFF website.

Will it extend my life to be mindfully optimistic like Connie says or keep a positive attitude with Lonnie? Staying positive when facing the challenges of Care Partnering isn’t easy for any of us, yet I believe it is worth the effort. Even if it doesn’t extend my life, having a positive outlook will make my days now go better. Perhaps I can’t have hope for my husband’s recovery from PD but I can hold the hope that we will have a good day today. And one good day at a time is okay with me.