I think that one of my biggest challenges as a CarePartner is not understanding when to stop. I know that my priority needs to be caring for my husband, but then what? How does taking care of the house, the lawn, the world outside fit into the role? We were a 50-50 team, now it seems like more of an 80-20 at best, how do I adjust to this new reality? And what happens when it is all on me, will I be able to handle it?

Which brings me back to my original thought, I will appreciate what is good and ignore what is bad. I really need to learn to ignore those negative thoughts that come into my head, the ideas that I have to do everything and that it has to be as good as my husband did it or I am failing. I need to remember that no one else expects me to do it all, so why do I think I can?

If I can prioritize the things that really need to be done, evaluate how our day is going, and then choose my actions mindfully, I will be able to do what needs to be done, and can let the rest go. If at that same time, I can ignore those nagging thoughts telling me I should be doing more, then I can do it all with a smile on my face. Life will be more fun and more fulfilling if I just learn to listen to the positive voices in my head and tell the negative ones to take a hike.

Long term care insurance is awesome but it can also be challenging. My husband needs minimal assistance with activities of daily living (ADLs) such as dressing, personal hygiene, meal preparation, and transportation. These are things I do willingly every day. Unfortunately, because I am not a paid caregiver, our Long Term Care insurance company does not recognize my work. Our policy, as most, has an exclusionary period before benefits kick in. This means that any help he receives must be documented by a professional, not an unpaid family member. In-home care is expensive, can we afford to pay someone $30 per hour for things I can do myself?

The improvements we want to do involve preparing for the long haul. We want to be proactive and make our home safer so that we can both age in place. Our policy does allow for home modifications, but again he has to be in care with an agency for 30 days before they will consider paying. What that really means is that he must be beyond the threshold of need before they will fix the threshold of our home so he can stay here.

We are again talking about what we do next. Is our plan to stay in our home realistic if we cannot move forward with the needed modifications? We are also talking seriously about what help my husband would accept from an outside person, if that is what has to happen. We are working with an Occupational Therapist as we try to navigate the system and find a pathway to a positive home environment for both of us. Hopefully keeping us in our current home where we have been for 20 years.

I recently invited a small group of Parkinson’s CarePartners over to share treats and watch a Michael J. Fox Foundation webinar entitled “so you love someone with Parkinson’s.” it was something I wanted to watch but also something I thought might be a good conversation starter. And, I needed to have that conversation.

Before the webinar even started, I realized we probably didn’t need it to get things going.  We talked about our partners and their conditions, but we also so many other things. We shared our feelings about the role we find ourselves in and the challenges we face. While each of our people with Parkinson’s are at different places in their illness, the stories were very similar. Our People with Parkinson’s are needing help with activities of daily living and personal hygiene issues we never expected. How much should we be doing and when do we look for extra help?

The most important component of these interactions for me are the connections I make. When I am with other PD CarePartners, we relate in ways that I cannot explain to others who are not on this journey. These are people who appreciate what I am talking about because they are living it too. Just knowing that there are others out there who understand, validates the path I am following and helps me stay positive.

Life can get tedious for both you and your person with Parkinson’s disease. Day in, day out we exercise, take meds, read, rest, nothing seems to change. It can feel like we’re a gerbils caught in a wheel thanks to the requirements of his PD diagnosis. How do we make it stop?

I find the best solution is to take a day and throw our schedule to the wind. Meds and meals will need to happen but they can be at a restaurant we like or even on a picnic. Exercise can turn into walks in the wilderness and naps can be on a drive somewhere nice. Life can continue outside our home and it can give us both a needed break from PD.

When we have the opportunity, we try to plan bigger breaks, a weekend away can work wonders for our moods and reminds us of past times when things were not so intense. We were able to sneak away earlier this year for a trip to the beach. It seemed that the universe was smiling on us because the day we arrived was rainy but the one full day we had there was beautiful. We walked on the beach, had some wonderful meals out and came back seriously refreshed and ready to face life again.

I am not a dietitian but I do try to incorporate vegetables in all of our meals and get some fruit in at least twice a day. Many of the Parkinson’s resources I have come across recommend the Mediterranean diet which could work for me because I like fish and fresh veggies. Unfortunately, my husband will only eat his fish deep fried and prefers his vegetables cooked. I like most fruits, he is a bit pickier. He chooses orange juice over a fresh orange with his breakfast ignoring the high sugar content. Instead of trying to change him, I make sure to keep plenty of healthy options around and sneak them in where I can.

Salads work well for us because I can add lots of healthy things based on what is in season and I can even modify them to meet taste preferences for each of us. I make a mean taco salad that allows me to include avocado and sour cream in my bowl and tortilla chips and salsa on his. We also like to do stir fry using healthy veggies and minimal meats. I do my best to find interesting ways to serve foods that he will eat including using cauliflower for a healthier pizza crust or adding spinach to soups and stews. The great thing about pizzas is that you can adapt the toppings to make everyone happy so we both get what we want.

I understand the importance of healthy eating and the impact junk food can have on our lives but there are those days when I just pack it all in and we have a hamburger or brats on the grill. Or, I choose to make comfort foods like macaroni and cheese or fried chicken. Even then I make sure to add some fresh veggies as a side. Life as a CarePartner is just too intense to always be worrying about the food we eat and sometime meals are simply meant to be enjoyed.

We have long range plans for what happens after we die, we don’t really have a plan for what happens if we are debilitated but don’t die. It happens. I know of two separate incidences where a seemingly healthy PD patient took a fall and had to be hospitalized. In one case, they are now looking into long term care because he suffered a brain injury and his CarePartner isn’t able to provide the level of care he needs at home. Things happen and we need to be ready just in case.

What would a plan for now look like? My husband has all of his medical information in a binder and I am working on mine so if someone has to come in and take over, it would be available. We make sure to always have adequate supplies of anything we might need. Our children all know some about what is going on with us and have keys to our house. Our monthly bills are set up with auto pay to ensure that the basics are covered and we always keep a cushion in our checking account so there are no surprises.

In addition, we are talking about what might happen. We are looking at our house with realistic eyes to decide how long we can actually expect to stay here. We are thinking about alternatives and discussing scenarios where we might need to bring in additional help. We are trying to be prepared in a world where nothing is certain except the fact that we love each other and want to be ready to make the best choices when those difficult times come.

Being a CarePartner is a very special role and, in my opinion, is reserved for that person who lives daily with someone who has Parkinson’s Disease and shares in the ramifications of the illness. It truly is a shared diagnosis. I don’t want to minimize the role other people play in our journey, it’s just that they cannot understand the extent that PD has become a part of us and what that all means. Our children and friends know about the disease, no one is living it fully as we are. While it is true they all love someone with Parkinson’s, they are not CarePartners.

The actual role of PD CarePartner is extremely unique for each person based on their situation. The level of care that my husband needs can vary greatly from day to day and has changed following his Deep Brain Stimulation surgery. Where we were dealing with heavy tremors before, he now has balance and speech issues. It is interesting to compare notes with others on how they interact with their person with Parkinson’s because, while there are some similarities, we are also facing many different challenges.

Just as we cannot know what the future holds for our Person with Parkinson’s, we cannot know what may be asked of us as their disease progresses. No one has the right to make difficult decisions about my husband’s care except for the two of us and no one should judge me based on any of those decisions I have to make. Our journey with PD is unpredictable, it will take us where it wants and I hope I am able to keep up.

Sometimes I think that my husband overthinks things. He tries too hard and makes tasks even more difficult. A great example is when he tries to use walking poles. He tells me that he cannot coordinate his arms with his legs which makes using the poles almost impossible. I watch him walking without them and his arms swing just as they should. My conclusion is that he is trying too hard to control the arm swing, overthinking it, and not allowing his body to move naturally.

How can I help him let go when I see him struggling? It’s probably not going to do any good to tell him to stop thinking so hard, he isn’t necessarily in control of his thought processes. What seems to work is to simply stop trying. If we are working on a new task or skill, put it away and leave it for another day. Then, later we can talk about what happened and perhaps try a different approach. If possible, I try to link what he is attempting to do to something he already does. In the example above, it is easy to connect the dots between swinging his arms when he walks and carrying the sticks as he does the same.

My husband struggles daily with things I can only imagine. I don’t want to add to his load by pushing him into things that I think he should be doing. And yes, that applies even if it is learning something that I think will help him in the long run. I need to remember that he is the one who drives the car on this journey, I am just along for the ride, and no one likes a back seat driver.

I had my annual examination yesterday and it is always interesting when I slow down and focus on my own physical condition. It is so easy to ignore my aches and pains or to accept the many sleepless nights when I am busy caring for my husband. After all, his challenges are so much more intense than mine. Unless I address my own difficulties, however, they can grow and lead to the point where I need someone to care for me and where would we be then?

I am always encouraging my husband to be honest with his medical team but when I saw my Primary Care Provider yesterday, I was hesitant about my own needs. Does she really need to know about everything that is going on or is much of it simply the fact that I am getting older? Does it matter that my joints ache or that I wake up regularly in the middle of the night? What will she be able to do about it anyway?

One thing she can do is remind me of the importance of my own health and well-being. She also validates the things I am feeling. She listens to me about my problems, something that I need, and she helps me look to solutions. Maybe there are things we won’t be able to change, but just having someone hear my concerns is so comforting. And yes, she is going to run some tests and try to help with a couple of my issues. My health matters and it is vital to revisit that concept even if it is just once a year.

Today is the second day in a row that our schedule is being disrupted. Yesterday it was a meeting I needed to attend in the morning and an evening meeting for my husband. Today it is an appointment for both of us. Our lives are pretty structured, any changes can impact either our meals or his meds and can result in consequences for us both. What was a good day can turn quickly into a bad day and neither of us want to see that happen.

So, when I have advance warning of changes we might face in our day, I try to talk them over with my husband and create a plan. Our appointment today is at noon, his usual nap time, and it could make the rest of the day difficult. He is thinking that he will nap later but I know he will be tired and not working at his best until he gets that rest time. It also means that I will need to be extra diligent because his symptoms become more pronounced when he is tired and he may be susceptible to falls.

Staying positive can be difficult when I am faced with unexpected challenges. I tend to fill my days with known tasks, and it is easy for me to become frazzled when I suddenly need to find room for something more. It is important in those moments that I step back, take a breath, and remember why I do what I do. If I can objectively look at any new or different new challenge, I can usually find a way to support both the new and the old without additional upset or drama. Staying calm helps me stay positive and they both are essential components in being a successful CarePartner.