I have been engaging in some self-care activities this week, a medical appointment and a haircut. Perhaps these don’t sound like true self-care since they aren’t things I do for pleasure as much as they are, quite simply, maintenance issues. However, making my basic needs a personal priority reminds me that I matter and makes me stronger.

One thing I noticed is that I am so used to having my husband with me all the time, I stressed about having to go to the doctor alone. And when I went to the hairdresser, I rushed back home with a wet head instead of sitting under the dryer. Has this role of CarePartner lead to me becoming co-dependent? Do I need him for support as much or more than he needs me? The reality is that I have incorporated the role of CarePartner into my life so much that I am not sure who I am when I am away from it.

Walking out the door and leaving the worries behind sounds good. Thankfully, I do still have some volunteer time away from home yet even then I keep my phone handy in case my husband needs to reach me. Recognizing the connection that has grown here, both healthy and unhealthy, will allow me to better understand how to take good care of myself and protect my individuality. I am capable and can still act independently of my husband. Exercising that skillset by prioritizing my needs will not only make me stronger and healthier, it will also allow me to be a better partner for him.

My husband has a birthday coming up soon. It is a milestone, 80 years on this earth, and well worth celebrating. This has been on my mind for a while now, how do I create a celebration that honors him and that will be comfortable for him? I like to entertain; how do I keep from turning this into something I want instead of what meets his current needs and that he would enjoy?

The first step was simply to open the conversation. If this is truly a party for him then he needs to be on board with the planning of it. He controls the guest list and the menu. We will choose a day with nothing else happening and a time that corresponds with his best on-times of the day. It will be short, no more than 2 hours so that he doesn’t exhaust himself. He helps plan any activities and can choose to participate or not depending on how he feels on the day. It is vital that I look at preparations for the event and make sure that I am not overloading either of us. Allowing plenty of time to prepare for the event can alleviate stress on the day and ensure that we are both at our best when the guests arrive.

Our guest list will include family and friends who understand his diagnosis. We’ve decided that a Sunday afternoon works best for us and are thinking we should host an open house so people can come and go as they please. Snacks will be finger food, no utensils required, and everything will be very casual. I am enlisting helpers, my sister, our children and grandchildren to make sure the day goes smoothly and we can both enjoy this time to celebrate 80 well-lived years.

I have a habit of starting my days on the scale, weighing in for whatever reason since I am not actively trying to lose weight. It has, as I said, become a habit. The real value of the experience is taking a moment of stillness as I stretch overhead and open myself to the day. I empty my mind and ask for patience to face whatever this day brings with kindness and love. It doesn’t always work, but at least I am trying.

Some mornings I bring back a positive memory from the day before or perhaps a regret of something that didn’t go as well as it could have. I ponder it briefly, then look at the possibility of the day ahead. I know what we have planned, I don’t know what life has in store for us and want to be prepared for whatever comes.

This all sounds like more than it is. I am on the scale for only a minute or two and all of these thoughts come and go quickly. However, just as my journaling, this activity helps ground me. If I can start from this place of peace, perhaps wisdom and energy will come when I most need them and lead me to a positive outcome for my day, I can only hope.

I think we all wonder sometimes if the meds are really necessary. A few years ago, my husband and I decided to stop his medication, just to see what life would be like without the carbidopa-levodopa. We discussed it with his neurologist who warned us that he would be okay for a few days but that she expected the “wheels would fall off” within a couple of weeks. She was so right. After our little experiment, it took him months to finally get back to a comfortably regulated place. We won’t try that again.

I need to remember that my husband doesn’t necessarily need the same supplements I take. My doctor recommended that I take fish oil to fight high cholesterol and support brain health. If it is good for me, it should be good for my husband, right? Wrong! Especially since he added it just before his DBS surgery and without consulting his neurosurgeon. I didn’t realize fish oil was a blood thinner and inadvertently put him at risk for a brain bleed. Later, when we were thinking about adding magnesium to his regime to fight leg cramps, we first talked to his doctor for her okay.

As his CarePartner, I am the best person to know when my husband’s medications are not working properly. I know his patterns and can see when things deviate from the norm. His medical team are the experts on medication, supplements and available treatments. That is why it is essential that I have a good relationship with his medical providers from his PCP to his Neurologist to a local pharmacist. I need to know that I can contact them at any time I have a concern and that they will listen and take me seriously. I also need to know that I can contact them with questions if we are considering a change, to make sure what we are doing will not put him in danger or cause unnecessary challenges for him. We all need to communicate if my husband is going to get the correct treatment for his diagnosis and that communication needs to start with me.

I hear my inner voice once again telling me that I just “screwed up” or “boy, that was a bone-headed move”. The term idiotic often comes up in my internal conversations. There is no way I would speak this harshly to my husband, what makes it okay to do it to myself?

Those negative words are powerful. They are tied to negative emotions that infiltrate my thoughts throughout the day. My self-image is damaged when I berate myself for mistakes or perceived failures. This mindset is unhealthy, unproductive and creates unnecessary stress in all my dealings, including those with my husband. According to an article on the Mayo Clinic website, turning those negative patterns around can help me live a longer, healthier and happier life. Positive self-talk can be where it all starts.

My husband’s Parkinson’s diagnosis provides me with plenty of negative opportunities. I can allow those things to influence my thoughts or I can try to take a different, gentler approach. Rather than considering myself an idiot for making mistakes, I will try to look at myself with kindness and understanding. I need to consider that I am a student still learning the many lessons of life. In that scenario, the more mistakes I make the better because that is how I learn best. So, bring it on PD, I plan to be your star pupil!

To see the entire article, click here- Positive thinking: Reduce stress by eliminating negative self-talk – Mayo Clinic.

I was reminded of this at a recent support group meeting. Looking around, I was surrounded by my peers in the other CarePartners in the (Zoom) room. My husband, on the other hand, was surrounded by others with this disease but their differences outweighed their similarities. One has high blood pressure another low, one has vison problems another hearing, my husband faces mostly physical challenges others are working through cognitive issues. Treatment plans range from Sinemet to CBD and the one or two who have had Deep Brain Stimulation. They all have Parkinson’s Disease, but the symptoms have presented uniquely in each and every one of them and most also have other factors at play. While I think this group does serve him as a social intervention, I am not sure whether he gets a lot of help on managing his particular symptoms.

This CarePartner group, however, is very much my team. These are people who know me and understand the shared challenge of watching our partners fight this disease. While there are differences in what our People with PD face, our lives are very much the same as we continue to love them and care for them. I know that they can identify with the days when I am exhausted by the needs of my husband and my home. I know that they get me when I say that I can’t take on any more at this time because my plate is too full. I know that I can turn to them when days are dark and they will help me see my way through.

My team may not include professionals like my husband’s does, but my people are experienced and compassionate with a wisdom born only of living the journey. They are walking a similar path to mine and, while they may not be on the exact same trajectory I am, they can still reach out and take my hand to help me along. I can only hope that I may be the same helping hand for others as we all move forward to wherever this life as CarePartner is leading us.

This is a reprisal of something I wrote a few years ago. I wanted to share it again in honor of World Parkinson’s Day on April 11th, I hope you enjoy reading it.

I have known of Parkinson’s Disease for about 30 years now. My father was diagnosed with it, and I tried to help my parents as he struggled with severe cognitive and physical symptoms. I felt that desperation when, no matter what we did the illness progressed, and he passed away in just a few years.

When my husband was diagnosed with PD we were somewhat surprised but also thankful to have an answer for his tremoring. Unfortunately, as his symptoms progressed, it became so much more. We found that Parkinson’s could easily take over our lives with a strict schedule of medications, medical appointments and exercise programs. Someone once asked me why we didn’t just forget about it for a while; if only it were that easy.

Instead of forgetting about it, we are learning to live fully with it. We have accepted that Parkinson’s is going to be with us for the rest of our time together so we might as well make the best of it. My husband is open about how he is feeling, and we build our days around his needs. After all, can’t we both learn to enjoy a nap after lunch? We continue most of our activities, albeit at a slower pace, which makes us appreciate them more. We have decided that this disease will only limit us as much as we allow and we are not going to allow much!

I’m having one of those today. I was restless last night, didn’t sleep well, then this morning I woke with a headache and a general feeling of lethargy. I would have been perfectly happy to curl up in bed and read a good book today, instead I have responsibilities to my husband, our pets, and our home so I am up and taking care of things. But, I am only doing those things that absolutely have to happen and am taking rest breaks regularly. I am allowing myself to have that low energy day and recharge so I will be able to face tomorrow at full power.

The first thing I did when I realized I wasn’t feeling great was to tell my husband. He needs to know why I am not as attentive and understand that I may need his help more than normal today. He is going to notice that I am acting differently, I want him to know why and not think it is something he has done. Actually, he has lots of ups and downs with his energy levels thanks to his PD so this is a time when he can really relate to what I am feeling.

Making it through today may mean leftovers from the freezer for lunch and take out for dinner, but that is okay. I could try to push myself and ignore what my body is saying but, from experience, all that will do is prolong my recovery from whatever is causing this. I will put off as much as I can today with the hope that tomorrow will be a stronger day for me. And it it’s not, oh well, who says I can’t take two easy days in a row as long as my husband is safe, fed and happy?

Sounds good, doesn’t it? The only thing I would add is to be aware of my limitations because my brain often thinks I am capable of much more than my body can handle. I’ve been working in my yard for the past couple of weeks and, even though I exercise regularly, I have developed aching muscles I never knew existed. I guess success, in this case, also has its cost.

New tasks don’t have to be physical. I was part of a support group yesterday where we discussed the administrative pieces involved in caring for someone with a chronic illness. Appointment scheduling, insurance hassles, advance planning and prepping for whatever might go wrong. It can be daunting and often leads to piles of papers on desks or stuffed in drawers. How do I tackle a task that seems to be growing and shifting every time I look at it?

I have decided to tackle things one step at a time, whether it is yardwork or paperwork, and let the rest go. I will start by making a list (I love lists) of the things that need to happen now. There are yardwork priorities, but it might mean only weeding one section at a time. In-home, it might mean connecting with part time care that could expand to more as the needs arise. Next, I will look at longer-term issues, things like hiring help to do bigger jobs outside, finding respite care or creating emergency plans for the unexpected “what ifs?”. Finally, I will revisit end planning, which we hopefully won’t need for a long time, but who can really know? Breaking everything down into manageable bits gives me the confidence to overcome these challenges. Creating a successful strategy that matches my capabilities will bring me through anything PD throws my way.

When I started writing, I sat down each morning and wrote one positive thought about what was happening in my journey as CarePartner. Then, when I started sharing my blog, I took those thoughts and expanded on them. It is interesting for me to revisit words I wrote years ago and find that they are still relevant today. I thought I might share some of my favorites with you today. Here’s hoping they bring you some peace…

Some days are easier than others but no matter how many challenges you face, there is always something positive if you look hard enough. Find it and hold tight!

Minor setbacks will happen, don’t overreact, tomorrow will be a better day.

Anger and frustration will be a part of your journey, don’t let them be the only part.

Your life needs to be about more than caring for your partner. Find things that bring you joy and do them, then share that joy in all you do.

Remember that even in the darkest hours, there is good happening in your life, if you only want to reach out and find it.

Sometimes you will get frustrated and act in less than kind ways. Stop judging your actions in those moments and remember to forgive and love yourself because this is your journey too.

Moving forward, even when the way is not certain, keeps you going and any movement is always better than none.

Remember to be grateful for everything you have and experience throughout the day today.

Joke, play, be silly, laugh with your partner whenever you can. Enjoy each other and the world around and let your journey be filled with light, not darkness.