Sometimes it isn’t even the care plan, it may be the interaction in the appointment itself that isn’t okay. And it may not be the doctor who isn’t understanding, it may be the nurse or others you first encounter. We had a difficult experience recently with a nurse’s aide who was refusing me admission to his appointment. To help the process along, I have written the following introduction for my husband to share with new providers. He agrees that it is a good idea.  

“I have Parkinson’s Disease. One of the symptoms of this illness is a condition called Bradyphrenia which causes my brain to process information slower, especially in stressful situations such as medical appointments. This can impact my ability to hear, understand and retain information from the doctor. My speech has also been changed by this disease which makes communication difficult. I have difficulty dressing and need help if any clothing is to come off for the examination.

My wife is my CarePartner, a vital member of my care team, and it is important that she be allowed to accompany me to appointments so she can know what is said and can support me during the appointment and in any treatment diagnosed.”

Our plan is for both of us to sign this and provide it when new appointments are made so the office has a chance to review and understand the situation. Then, on the day of the appointment, we will also bring a copy with us and present it to the receptionist. I hope it helps.

Sometimes I am faced with things that seem impossible. It may be a physical challenge that is beyond me or a mental challenge that I just don’t feel comfortable tackling. It may be something that I need to do in caring for my husband or something I need to do to take care of our home. Whichever it is, I am finding that I am more capable of getting things done than I ever thought, when I start with an open mind and positive attitude.

Included in this idea is that concept that I don’t always have to do things myself, sometimes getting a difficult task done means finding the right person to do it. Understanding what my strengths are and where they end has been difficult. My parents were very self-sufficient, especially my dad who was a master at taping and gluing things back together. I can’t recall ever having a repairman come to our house, not that we didn’t need one at times. Which leads to my hesitance to hire out tasks that I think I should be able to do. I have to remember that just because I think I can do something doesn’t mean I should try.  

Getting back to my original thought, I am finding ways to get most things done even if they do seem impossible. We needed to add some grab bars in both bathrooms. After reviewing the instructions, I decided to give it a try. I was able to find the studs, use the appropriate power tools and install the bars without destroying the bathroom walls. However, we also recently needed work done on our garage door opener. This involved ladders and working above my head. After carefully evaluating the problem, it seemed wiser to hire a professional to take care of this task. By first looking at what was really needed, I was able to make sure that both tasks were accomplished safely and in a timely manner.

I learned a new word today when, during a webinar for CarePartners, someone referred to PD as a “tripartite” illness. I have always known of the 2-edged sword we face- the physical and cognitive challenges, I guess that I didn’t realize that mood disorders, including anxiety and depression, could be a separate factor of this disease. I think that I assumed moodiness came along as a subset of the other two, but now see that it can be just as debilitating if not recognized and treated. 

So, if my husband has a “tripartite” illness then I think that what is being asked of me as a CarePartner is a “multipartite” response. I have to be ready for whatever each day brings, good or bad. He has days when he feels less energy and I may have to ramp mine up to take care of things. Then he has days when he is off-balance so I am constantly vigilant, making sure he doesn’t fall. He has days when he is quiet, days when he is more outgoing, days when things are okay and days when they aren’t. And I am present for them all.

Not knowing where his disease is going to take us, or even what today is going to look like, is challenging. I need to remember that no matter what I face as a CarePartner, it is much more difficult for my husband who is actually dealing with these changes internally. He cannot stop the tremors, the moodiness, the cloudiness, none of it is under his control. As his PD symptoms progress, I must continue to build my multipartite toolkit so that I can provide the support he needs no matter what comes next.  

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.