While I write this, I am thinking about the side effects of Parkinson’s medications, the potential aftereffects of surgical interventions, the choices we all face when deciding whether a recommended treatment or the disease is worse. Many of the drugs for PD come with warnings about dyskinesia, dizziness, constipation, confusion, even impulsive behavior. All treatments presented to my husband have some negative aspects and it is important to weigh whether they could potentially cause more problems than the symptom they are designed to control. This can be particularly difficult when your loved one has cognitive impairment and you are left to figure things out without their input.

In our case, my husband is still capable of making choices and has declined many medications because they disrupted his sleep or his thinking processes. When he took them, he would have nightmares, strike out in his sleep and then was groggy all day long. After years of consideration and multiple conversations with his neurologists, he did choose Deep Brain Stimulation surgery. We made sure that we both understood the risks before he underwent the procedure. This trade-off took his tremors away but replaced them with balance and voice issues. I think it was worth it, I’m not sure he agrees.  

Everyone presents differently on their journey with PD which means their treatment options, and reactions to those options, are going to be different. There may be universal things, like carbidopa levodopa, that can provide relief for everyone. Then there will be medications or procedures like my husband’s DBS which work only on a particular sub-group. I try to help him by researching his options and their potential outcomes. I ask questions, observe what is happening and talk with him and his doctor when things don’t look right. Most of all, I always discuss any concerns about what could happen when he is making changes to his treatment plan. It’s essential that we work together to figure out what treatments are best for him and for us.

Am I his wife or his caregiver in this moment? How do I switch one off and turn the other on? Which do I want to be, and which do I need to be? When did the lines become so blurred? What does my husband see when he looks at me? All questions I face daily now that we are reaching more advanced stages of my husband’s diagnosis. My biggest question is can I keep my role of wife alive as we move further in this journey, or will I simply become a caregiver at some point? Is that what being the spouse of someone with Parkinson’s Disease means?

I hope my answer to that final question turns out to be no. I married the man, not the disease, and don’t want to lose that connection. To keep that from happening, I continue looking for tools that allow him to maintain as much independence as possible. I am figuring out those things I don’t want to do for him and letting someone else help. We have a foot nurse who trims his toenails, we have hairdressers and a health aide who help with grooming. I know they can’t be here 24/7 so there will be times when I must provide care, but I don’t want it to always, or only, be me.

My husband’s illness is progressing slowly which gives us time. My personal goal is to remember that I am his wife first. The cuddles, the hugs, the kisses and whatever else we are still able to manage matter. I was at a presentation on intimacy and PD years ago when a CarePartner in the audience shared her perspective. Even though her husband was at final stages they could still hold hands, they could still spoon in bed, she could still feel the man she loved in those moments. And she knew that he was feeling it too. Perhaps it will only be moments someday, I must do what I can now to ensure that they are there for us too.

My husband loves having a glass of orange juice in the mornings. It is actually the only fruit I can get into him at that time of day. I was talking with a friend whose husband is newly diagnosed and she told me that she read somewhere people with PD should not have citrus and that included orange juice. I was shocked. I had never come across this before and decided to do my own research before asking him to make any changes to his diet.

I started by entering “orange juice and PD” in my search bar. There were a few hits and I wanted to share the three that I found most interesting. The first didn’t apply to our situation, but it seems that Harvard researchers have found drinking citrus juices may serve as a deterrent to developing PD. See more here Foods, drinks with flavonoids may reduce risk of Parkinson’s Disease | News | Harvard T.H. Chan School of Public Health. My next find was on the Davis Phinney website where they shared a guide to eating well with PD that was written by Martha Henze, MPH, MS, RDN a Registered Dietitian Nutritionist. She says that we need to stock OJ and other fruit juices and suggests it is a great way to ensure that my husband fulfills his daily needs for vitamin C. You can read her complete article here How to stock your fridge, freezer, and pantry to live well with Parkinson’s – Davis Phinney Foundation. I finally found a warning about OJ and PD on a website called Parkinson’s Disease.net that is written by patients with oversight by a medical and editorial team. In the article it mentioned that people who have problem with nausea when taking their carbidopa-levodopa should avoid acidic and citrussy foods including orange juice. Since my husband does not have a problem taking his meds, we can ignore this advice and move on. See what else they had to say here Foods to Eat and Avoid with Parkinson’s (parkinsonsdisease.net).

What this reminds me is that the internet can be a great resource, but I really need to look deeply and make sure what I find is accurate for my husband. The way his Parkinson’s presents is exclusive to him and what he needs will be just as exclusive. I must always try to confirm anything I find on at least one other website and depend heavily on my main three, the Parkinson’s Foundation, Davis Phinney Foundation and the Michael J. Fox Foundation. I always need to look beyond the basic information to the “why”. Why did they say he shouldn’t drink OJ? Because it might make his nausea from the meds worse. My husband doesn’t experience nausea, so this advice is not for him. He gets to keep his OJ.

Important to note: Anything I find on the internet should always be confirmed with our neurologist, she knows my husband and his particular situation and needs to know about any changes we are considering, no matter how small they may seem to me.

Let me tell you about today.  My husband had an appointment at the same time we usually go grocery shopping together. (Have I ever mentioned that our lives are somewhat structured?) It meant I would be shopping on my own at a later time when the store is potentially busier. Plus, I needed to buy more, since it is the week when we host our family get-together. I was stressing about the time change and I was stressing about having to do it all alone and I was stressing about whether my husband would be okay at home without me. I was so wrapped up in worry I wasn’t able to be here for my husband. I was so busy thinking about what was to come, I couldn’t experience what was happening now. 

It’s called anticipatory anxiety and I have written about it before, but felt it might be time to revisit the topic. I’m sure you’ve al heard the saying, “don’t borrow worries from tomorrow.” I need to consider that I shouldn’t even borrow from later today. My worry only interferes with my life in the moment, it doesn’t help me deal with anything that is coming later. I can’t control things that might happen even in 10 minutes, I can only do my best to be present and respond to what I am facing now.

I know that our future has a lot of uncertainty, and I could easily spend everyday trapped in worry. Instead, I will shake it off and remember that I have enough to care for on my plate right now. I’ll face those new challenges when they arrive, and I won’t waste my energy worrying about them in the meantime. By the way, I went to the grocery store and it all went okay. It took me a little longer to bag my groceries but the people around were patient and gracious. My husband was fine at home, he had been napping and remembered to take his meds. All that worry and stress was for absolutely nothing.

For the first few years after his diagnosis with Parkinson’s Disease, my husband and I were going it alone. We were both working and didn’t have time for support groups. Besides, my father had PD for several years before he died so I thought knew what to expect. I was so wrong. There was one person at work whose father had PD and we met occasionally for coffee, but our situations were so different. I was depending on webinars and bi-annual visits with our neurologist for answers to my many questions. A lot of what was happening felt so strange and I didn’t feel comfortable talking to my husband about it. I felt alone and lost. 

Shortly before I retired and became a full-time CarePartner, I started looking for a Parkinson’s Disease support group. I didn’t know what we would find but knew I needed something, someone who would understand our struggles. That first meeting was wonderful. We walked into a room full of people who weren’t staring at us or judging us, they were simply welcoming us with love. I remember crying a bit as we shared our story. It was scary joining with others who were farther along in their journey, yet it also gave us the opportunity to see the diversity. I hadn’t really understood how Parkinson’s affects everyone in such unique and different ways until we met this amazing group of people.

We have been a part of this group for several years now and I serve as a co-facilitator. I will gladly admit that the support has been more for me than my husband. It’s a place where we, I can talk about the challenges we face and often find solutions. We are able to share our journey with others who truly get it more than our doctors or our families. The one piece of advice I would give to anyone whose loved one is newly diagnosed, is don’t wait. Caring for someone with a chronic illness like PD can be impossibly difficult, find a group to help you on your journey and hold them close.

The holiday season looks different now that I live with someone who has Parkinson’s Disease, that doesn’t mean I can’t still celebrate with family and friends. I have found that the following tips help me enjoy our holidays without exhausting either of us.

1. Be honest with myself and choose activities wisely. Consider what my personal capacity is and only accept those invitations or make plans that will fit within our current situation. I don’t have to do things simply because I have always done them in the past.
2. Do my groundwork ahead of time. Talk with my husband about what’s coming up and decide together what we want to do. Talk with friends and family so they know where we both are in our journey with PD so they can be supportive and understanding of our needs. Create realistic expectations for everyone. If we can only stay for an hour, or I need the party I am hosting to only last for two, I let everyone know in advance.
3. On the day of the event, I can be a good buffer. I can help my husband connect with others but keep an awareness of how he is feeling. It may be that he simply wants to find a quiet corner so he can interact on a smaller basis and that’s okay.
4. Accept that things may be different as my husband’s symptoms progress. It’s okay if we don’t decorate the house. It’s okay if we don’t go to everything we are invited to, it’s okay to change traditions to fit what we need now.
5. Remember that this is my life too and that it’s okay for me to find time for joy in the holidays. Maybe this year I order dinner from the grocery store rather than spend the day cooking. Maybe I ask for help cleaning the house before guests come over, better yet, maybe I let someone else play the host this year. Maybe I find a way to step out of my role as CarePartner to relax and engage in the fun. It’s all okay as long as I find ways to share in the love and the holiday spirit with our family and friends.

We have a caregiver coming one afternoon a week for 4 hours. It’s working well, she helps my husband and does a few chores for me, things he used to do. They go out to the gym together, which gives me some alone time in my house. I can go shopping without feeling nervous about leaving my husband at home. It gives me a much-needed break and forces my husband to interact with another human being. But there are still challenges we need to work out.

For example, I don’t always want or need to go out while she is here. If I don’t leave, they interact with me, whereas I just want to be left alone. I can lock myself away in a back room or go outside so I am not available, but why should I have to? I always make a point to thank the young woman for taking care of my husband and emphasize how much I appreciate having uninterrupted time for my chores, but why do I feel the need to be doing chores? Why can’t I just be here relaxing while she is in charge?

Last week, she mentioned that she was going to change the bedding while I was available to keep an eye out for my husband. I didn’t answer, not sure what to say. I have been thinking about creating boundaries for this time and if it comes up again, I will say (as kindly as possible) that she is here so I don’t have to keep an eye out. I will tell her again how much I appreciate her help, and then walk away. I need for her to be his ‘go to’ person while she is in the house so I can ‘go to’ my quiet place and enjoy the break.

My husband almost walked into a wall the other day. He has almost falls, those times when he goes to sit down where he thinks the chair is and it isn’t quite right. He almost missed the bed last night, sitting too close to the edge. He tends to walk too close or will bump me because he doesn’t recognize that I am standing next to him. His sense of where his body is located has become skewed thanks to his diagnosis of PD.

This is also referred to as losing visuoperceptual ability and means just that, not being able to perceive where things are in the space around you. In my husband’s case, it includes not being able to perceive where his body is in relation to those things. It isn’t an indicator of any form of dementia, it is a unique challenge and it appears tied to the decreasing dopamine in the brain. As the disease progresses, some people find it more difficult to recognize colors and contrast which appears to negatively impact their understanding of spatial relationships.

I try to keep an eye out for those times when my husband is particularly wobbly to minimize his falls. I watch as he sits and even help guide him down at times. When he stands too close, I move away to give us both space. I help him in and out of bed. The main thing I do is try to be patient and understand that this is simply one more thing he cannot control. It’s one more reason I hate the disease and love the man as he continues fighting against it every single day.

For a look at one of the smaller studies conducted visit Visuospatial dysfunction and problem solving in Parkinson’s disease – PubMed (nih.gov).

I wish I could say that the above statement wasn’t true, but unfortunately it is. My greatest anxiety comes from the unknown qualities of this disease, the uncertainties about where it is leading and what new challenges tomorrow will bring. Added to that are my personal concerns about my own health, will I be able to provide the care my husband needs as things progress? Is it any wonder I am living in a constant state of anxiety?

I tried to find advice on-line for caregiver anxiety and was redirected to depression and burnout. I want help before I reach that point, not after. I know that Connie Carpenter Phinney of The Davis Phinney Foundation has a tool called “Rewriting the Rulebook”. It reminds me that I do have some control in this journey, albeit limited, and that I just need to define my “rules” so that I can have a positive life. It’s not a roadmap but it can help me create boundaries as I stumble along and may alleviate some of my daily anxiety. I don’t always know what to expect but I can have a plan on how I will react.

If I recognize when my anxiety begins to grow, I can stop for a moment and consider where it is coming from. If possible, I take a journaling break, if that doesn’t work, I take a couple of deep breaths and try to shake it off. Movement helps me deal with feelings of anxiety, breathing helps me, writing helps me, yoga really helps me. To break anxiety’s hold over my emotions, I use any activity that demands my total attention. I find something to remind me that life is bigger than my husband’s diagnosis of PD, and then I am ready to continue on.

For more on how to address your feelings of anxiety see Anxiety and Caregiving (familycaregiversonline.net). To get your own copy of Connie’s Rulebook, visit here Parkinson’s Care Partner Resources – Davis Phinney Foundation.

My husband has fallen twice in the past couple of months which means that we have had more bad than good days. But today has been a good day. He got up feeling energetic and helped me prepare breakfast. I was able to take an hour and watch a CarePartner webinar and then we participated in a Rock Steady Boxing class together for an hour, something we’ve been missing for quite a while. He even felt good enough to go out and get a haircut and visit a coffee shop with me afterwards.

I wasn’t expecting a good day but am grateful we are having it. Even the weather seems to be cooperating, the sun is shining, and the temperature is well above average for this time of year. We’re probably about done with outside activities; the day has been somewhat busy for us, and I don’t want to push my luck. I am simply thankful for the opportunity we are having to revisit some of what life was like pre-Parkinson’s.

I know that I can’t base my expectations for tomorrow on what has happened today, I just need to be ready and willing to accept whatever comes. I will, however, strive to hold tight to the pleasure that today has brought to both of us. Like I said, it has indeed been a very good day.