I used to work with families, particularly families whose children were having difficulties and had become involved in the local Juvenile court system. One piece of advice that I shared often was something I learned as a parent. How we see our children has a serious impact on how they see themselves and can shape their behaviors. I am in no way saying that my husband has entered his second childhood and needs to be treated as such, but what I am trying to say is that this same principle can apply. How I see my husband changes how I treat him and can change how he decides to act in his battle with Parkinson’s Disease.

My husband still showers and gets dressed mostly on his own. Would it be easier and faster if I were there to wash his back and feet? Certainly. I could also be there to help him dry off afterwards. Then I would shave him and brush his teeth and hair for him. Would any of this make a difference in how he looks? That is doubtful. It could, however, make him feel less capable, less competent, more dependent on me. My husband says that he needs to do these things for himself to maintain his skills; I think it also helps him maintain his dignity and independence. The day may come when I have to do more, I don’t want to go there until we absolutely have to.

If I see him as an invalid and treat him as such, he will accept that and become an invalid. I speak from experience; I saw this with my parents. If I see my husband as capable and encourage him to keep on trying, I believe that he will feel positive reinforcement and work harder to fight this disease. I learned long ago that giving too much help can lead to a sense of helplessness. Instead, I strive to provide just the right amount of support and encouragement so my husband can feel he has a partner in this journey, not a nursemaid. I want him to know that I believe he is capable, competent and amazing. Especially, I want him to feel and know that I love him and am proud to be walking alongside him during what is probably the most difficult period of his life.

There are a group of us in my PD network who get together for breakfast once a month. It’s an unstructured gathering, no topics other than being a CarePartner for someone with PD which is always the elephant at the table. I sit at one end of the room with my fellow Partners, our People with Parkinson’s are at the other end so we can speak freely about challenges without upsetting anyone. What always amazes me is how different this disease presents in each individual afflicted, yet how similar all of our responses are when caring for them.

There is such a wide spectrum of symptoms in Parkinsonism and this small group represents many of them. Some of our loved ones have developed mobility issues and arrive sporting canes, walkers, even wheelchairs. Some have cognitive challenges including hallucinations and delusions. My husband has to deal with speech and balance issues. No matter how the disease presents, what all my CarePartnering friends express primarily is a sense of loss. It is actually a progression of little losses that continue taking away more of our loved ones each day. I see it as an impossible battle with an unrelenting enemy and all I can do is keep on fighting, hoping for the best. 

I am so lucky to be a part of this amazing group as we share our journeys with CarePartnering. I don’t know how I would make it through without them. I have found answers to questions about Parkinson’s Disease, about being a caregiver, about the household problems we all get to take over when our husbands are no longer able to do them. Most importantly, I am learning about self-care. The breakfasts themselves are positive and therapeutic as we come together to share stories of our lives. Our table rings with laughter, we leave the tears and fears at home. Belonging to this wonderful community of supportive women is the best tool I have in my CarePartnering kit, and I am so thankful for them every day. 

This group formed when a fellow CarePartner and I decided we needed a time to just get together and talk. The next month we invited two more to join us and then two more, I think you get the idea. If you don’t currently have a group, start your own. You won’t be sorry!

Many of the challenges we face are difficult to discuss, things like toileting and personal grooming. How do we tell friends and family that our person with PD may need to be accompanied to the bathroom and may need assistance cleaning themselves? Or that they need to be mindful of his balance and help him out of chairs? How do I help them understand that his verbal communication has been impacted by his illness, but he is still there and needs to interact regardless of how difficult his speech may be to understand. One of our biggest issues is that my husband has difficulty walking distances or simply getting out of the house. How do I explain these things to those who have never experienced them? What help do I really need to get through the day?

Thankfully, we have a supportive group of friends within the PD network and I can tell them anything. They get it because they live it alongside me. They don’t, however, have the ability to assist me because they are so busy surviving themselves. Talking with them, however, is extremely helpful because the conversations we have helps me recognize my challenges. Once I have verbalized the challenge, it is so much easier to brainstorm solutions.

One thing that I came across recently was the idea of writing my challenges down. Defining specifically what needs to be done allows me to figure out where I really need help. I use this list to create another one, a “help wanted” list. It might include covering chores, or it might be something bigger like exercising with my husband to give me a break. Then, when I am talking with friends or family and they ask how they can help, I just pull out my list and actually ask for something tangible. Difficult conversations about challenges would become more useful and create positive outcomes. I’ll be writing my list and posting it on my phone later today, ready for when that opportunity arises.

It’s my Birth-month! For those of you who aren’t familiar with this concept, the more birthdays I have the more I feel the need to celebrate. One day, even one week just isn’t enough so I have decided to make it a monthlong party. Why not? After all I am getting older and feeling it. I can and do fight aging, but ultimately, I must accept and live with this fact so I might as well make it fun.

Our celebrations have changed. What used to be weekends away at different surprise locations have become carefully orchestrated daytrips within reasonable driving distance. What might once have been a day at a spa is now an hour getting my feet massaged and my nails trimmed by a registered nurse. What might once have been dinner out and a Broadway show is, well maybe that hasn’t changed so much other than we skip the meal and do a matinee so we’re home by nap time.   

It is so easy to get caught up in being a CarePartner that I forget I have a life too. Doing different things and having fun is good for both of us. It changes up our routine and creates new challenges that expand our lives. I owe it to myself to remember my milestones and celebrate them. Sharing those times with my husband gives me the chance to take some of the emphasis off his diagnosis for a while. I hope that sharing it with you helps us all remember that we are so much more than CarePartners. Happy Birth-month to me!

When my husband was first diagnosed with Parkinson’s I was frightened. I thought I knew what to expect based on what I had witnessed thirty years ago when my parents struggled with this same disease. My father developed cognitive problems early, I wonder now whether he actually had Lewy Body Dementia. He shut down emotionally and physically and spent his final years in a wheelchair. They had an ugly journey with PD and I was terrified that was what we were facing too. No one had yet told me the adage, “If you’ve seen one person with Parkinson’s, you’ve seen one person with Parkinson’s”. I was preparing for the worst, and I spent a lot of time worrying.

What I have learned since then is that when I spend my time worrying about my husband and our future, it takes me away from what’s happening in the current moment. While some negative anticipation is normal, there is a huge difference between dreading what might be coming or finding ways to live fully and enjoy with what we have right now. If I am caught up in all the things that can go wrong, I miss all the things that are going right.

We are over a decade into this battle, and I finally accept that whatever Parkinson’s Disease has in store for us will come whether I worry about it or not. Instead, I am doing my best to encourage and support my husband as we meet and overcome the daily battles. When those new challenges come, we will face them with courage and positive motivation. Living for today, not worrying about tomorrow, and loving all the way, will help us make it through together.

As a CarePartner, I seem to have taken on a greater sense of responsibility to make sure we are ready for whatever comes our way, even those things that have nothing to do with my husband’s diagnosis. For instance, we are currently undergoing some inclement weather. It has been cold and snowy in our neighborhood for several days now and we haven’t been able to go anywhere. If it hadn’t been for my back-up supply of frozen foods, we would have gotten hungry. I did run out of almond milk, so my coffee has been black for a couple of days, bummer. We finally made it out to buy groceries yesterday and now they are predicting another round of snow for tonight. When is it going to end?

We always try to keep up with medications, making sure we have at least a 2 week reserve. I am not as good at keeping an eye on my supplements and one of them ran out in the middle of this storm. I have been doing without it, a reminder of the value of tracking my entire medication regime as carefully as my husband’s. There is a refill on one of his medications waiting at a local pharmacy, we’ll pick that up today before the next round of weather hits.

We have been lucky this time, our power has stayed on and we did have food to eat, albeit frozen leftovers. We keep a stock of candles and wood for the fireplace just in case we do lose power. We didn’t need to leave our house this time so we stayed put. We had almost everything we needed and now have a chance to restock before the next wave hits. Preparedness matters, whether it is for something health related or something totally outside that realm. As Bob Dylan once said, “You always got to be prepared but you never know for what.”

When I am sitting at my desk writing about the challenges of being a CarePartner, I can often work my way to solutions for difficult situations. I have my friend google to help me with options and can really dig deep to figure out what needs to be done. Unfortunately, that doesn’t always work in the real world because ‘knowing’ is a passive state, ‘doing’ takes motivation to act and is often much harder.

A great example is when someone tells me how much they enjoy reading my blog and how they are doing something I suggested. I think about the time a friend told me she moved her husband’s Aware in Care kit into her car so they are ready in case of an emergency trip to the hospital. I had suggested this in a blog after realizing that my husband’s kit sits on a bookshelf in our house and has never been used. Would you like to guess where our kit still is?

It is easy to dissect a problem when we are not in the middle of it. It is possible to devise a plan that could alleviate issues when I have the time and am in a quiet place. What too often happens, however, is that once I finish writing and step back into the busy-ness of my life, I forget all about that great solution I just created. I get caught up in the moment and never quite get beyond that. I may be able to come up with the good ideas in my words, now I need to make sure that my actions follow through and back them up.

But what if that positive intention is I am positive things are going to go wrong? Or I am positive that I am too tired to face this today? Or I am positive I need a break/nap/day off? We all get there. It may be exhaustion, frustration, or simply emotional distress but I find there are days when I just want to hide in my room and pretend that Parkinson’s Disease doesn’t exist. (I’m sure my husband feels the same way at times.) In reality, I can usually escape for about 20 minutes before something comes up.

Which brings me back to my original thought, start each day with a positive intention. This concept is what inspired me to start writing in the first place. Originally the plan was to sit down and write one positive sentence each morning. My hope was to begin my day off with the right mindset. It was a somewhat Pollyanna vision of being a CarePartner, the fact that I could create a positive word cloud around myself that would get me through the toughest situations. It was like an ever-changing mantra redefined daily to help me survive. I quickly learned that one sentence was not enough, and this blog was born to take a deeper look at my role as CarePartner.

I know that having a brief moment of clarity before I start my day may not solve all of the challenges I will face, but it also doesn’t hurt. Being a CarePartner can be difficult and negative at times but it can also be very rewarding. When the negative feelings strike, I need to step back and find my positive space even if it means letting those bad feelings come out and then putting them aside. Yes, there will be days when my outlook is anything but bright. On those days, my positive intention might be simply to remind myself that I made it through yesterday and I am strong enough to make it through today. Then, I will find my private place and hide out for just a few minutes. Those mini-breaks really can do wonders.

The older I get the more conditions I develop and the more medications I seem to need. My latest affliction is heartburn which I self-diagnosed. I was able to find relief with an over-the-counter medication. What I didn’t know about the O-T-C medication was that it not only blocks the acidity in my system, it also blocks the absorption of one of my prescription medications. I had told my doctor about both the medication and the O-T-C, but she didn’t warn me about any contraindications. I wasn’t buying them both through the same pharmacy so there wasn’t anyone to counsel me there. I found out there could be a problem when I used an on-line tool called Drugs Interaction Checker provided on the WebMD site. I had originally wanted to see if any of my husband’s meds were a problem but when he came out all okay, I decided to try for myself. I am so glad I did.

The first thing I found on this site was a tool where I could list all of our medications and do a quick check for any known interactions. It is relatively easy and only takes about 5 minutes once you have entered the list of medications and supplements you take. Looking at my husband’s medications gave me a clearer picture of what might be a problem. Then, entering my list gave me questions to take to my next check-up. The site also has information about potential food interactions. It was very helpful.

The WebMD tool is not the only one out there. I found it by searching for “drug interaction tools”. I would never recommend changing medications or supplements based on what anyone might learn from the internet. What I am saying is that this is a good tool to start a conversation with doctors. In this day and age when we get prescriptions from a mail order service, a local pharmacy and buy so many things over-the-counter, it is good to know that there is a tool where I can get information on everything all in one place. It gives me a sense of peace to know that I can look for potential problems with medications before they arise rather than deal with them after they happen.

My husband referred to these on-line tools as “artificial intelligence at its finest.” They are built on a database that can compare and contrast medications and even supplements for us. They are not human so they cannot take any special situations into consideration. That is why I recommend using them as a resource to gather information, but not as a tool to decide which meds to take. Those decisions should only be made in conjunction with a professional.

My husband got a new tool for his box this week, a walker. I have been suggesting to him that it might make things easier for him in his struggles with mobility and balance, but he has been reluctant to take this step. We met with his boxing coach for a one-on-one this past week and she had him try a couple out. He tried an upright walker and a standard and got to feel the difference they could make for him. I think that the opportunity to see how it felt, alongside her expert advice, was the determining factor for him since less than a week later he agreed to buy one.

After looking at local options, we brought home a standard walker yesterday. Now it sits in our living room, a constant reminder that this is a progressive disease and he is progressing. After being so excited about the possibility of going out for walks again, the reality has hit me like a ton of bricks. I need to let go of my fear and positively accept this change by focusing on all the things we will be able to do again. There are some who would say my feelings are petty since I am not the one needing the walker. I would remind you that I am the one in love with the one needing the walker and it impacts me too.

He needs to use his legs more and this new walker will allow him to do that. Actually, we both need to get out more and so utilizing the walker will be healthier for us both. His coach stressed that in order to improve his stability and stamina, he needs to practice, and this is the way for him to get there. I need to remember that in this long-term battle with PD we must utilize every tool available to us. This may not be where we want to be, but it is where we are. This is not as a sign of things to come, but instead is a tool we can use to hold them off a bit longer. We can fight this battle together as long as we keep hold of our positive attitudes.