I have been keeping a journal for over 5 years now. At first it was a place where I could vent and rail about my husband’s diagnosis. It was a safe place to complain about all the changes we were facing and perhaps, in writing about them, find better ways to cope. Many of those earlier entries were full of anger, frustration, sadness, the losses I was experiencing. It was helpful and kept me from taking out those negative feelings on my husband. What I have discovered since then is that my journal can be so much more than just a relief valve.

I keep all of the journals on my computer which gives me the ability to back and see if there are patterns. Is spring a particularly difficult time for us and why? On the Parkinson’s side, when did my husband take his first fall and how many since then? I can look at entries that have nothing to do with PD, review work we’ve done on the house and see who helped us with it. More recent entries are often about the weather or things happening in the world instead of being full of PD complaints. I am able to track ups and downs in my emotional health which helps me take better care of me. I can look back for times when things were going well on days when I need to remember that good times still exist. 

The longer I keep my journal, the more I value it and feel out of sorts when I don’t take the time to write. It has become my constant companion, a safe, non-judgmental space where I can say anything and everything. Cussing is allowed and grammar doesn’t matter because I am the only one who will ever see these words. If I were to give one piece of advice to my fellow CarePartners, it would be to take time every day to write down your feelings and your thoughts. You won’t know how helpful it is until you try it.

Everyone who is diagnosed with Parkinson’s has a different reaction to the disease. My husband, presents with predominantly physical symptoms, others may face more cognitive challenges. For some people, the disease progresses quickly, for others it may take years for symptoms to develop.  When you add the fact that many of our friends with PD are also battling additional illnesses it makes me wonder, do medications some people take for other ailments make a difference in their journey with Parkinson’s?

We once had a friend in our support group who was being treated for leukemia and swore that his PD symptoms improved based on medications he was taking for this other diagnosis. I am not a medical professional, but wonder whether boosting the immune system in someone’s body to fight one illness could also help with other problems? Did improvement in his leukemia symptoms make him think his Parkinson’s was progressing more slowly, or could the slowing have been an actual side-effect of his leukemia treatments? I don’t have any answers but also don’t see how treating one disease so aggressively couldn’t impact other things happening in the body.

My husband has not been diagnosed with any other chronic illnesses so he only has Parkinson’s to deal with. One of the women in our network says, “you should only have one”, meaning if someone is diagnosed with Parkinson’s that should be enough. Perhaps she is wrong and having multiple diagnoses could lead to better treatment? Maybe working with multiple medications for different problems will help researchers find a cure? We can only hope that something good comes from all of it as our loved ones continue to be guinea pigs in this grand experiment called Parkinson’s Disease.

I was reminded of this at a recent Parkinson’s Disease CarePartner gathering. A fellow Partner had injured her back trying to help her husband get up from a fall. She told us she finally had to go get the neighbor to help, but was that her best choice? I know how it happens. When my husband falls, my first instinct is to rush in and help him get up. I have been through training that tells me to do just the opposite, but my brain still wants to react in the moment. I forget that I can’t physically lift 200 pounds, nor should I assume someone else can safely do it.

The best response to a fall is to let my husband do his own self-check to determine whether he has done any damage and then he can let me know what needs to happen next. It is important that he has the opportunity to get himself up if possible. He will ask for my assistance if he wants it, perhaps he needs a chair moved closer to give him some leverage. My job is to be ready to call 911 if he can’t get himself off the floor. He needs a professional who can provide help without causing more damage and someone who can evaluate whether he needs additional treatment. My husband may not think it is necessary, but I have the right to override him when it comes to safety issues.

Getting back to my original statement, I can ask my neighbors to help me with yard work or moving furniture. I have asked for help doing minor home repairs. I can ask them to check in on my husband if I have to go out unexpectedly, but I shouldn’t be asking them for anything that involves physical contact. Think about it, what happens when they attempt to help with something and instead hurt themselves or my husband? That leaves me with even more of a disaster to deal with. I want the best care for my husband, especially in emergency situations, and that means trained EMTs. I may ask the neighbors to keep an eye out for the ambulance, but I’ll leave the actual care to those who have the appropriate training.

Which also means I may not realize how challenging my life has become as his CarePartner. When I am alone with my husband, taking care of his needs and doing whatever needs to be done seems natural. The changes in my role have come on slowly as his Parkinson’s symptoms progressed. The analogy that comes to mind is that I don’t always grasp how deep I am in the pool until the water is over my head. Suddenly I am struggling to survive, when did it get this crazy?

This is where I give credit to knowing others who have Parkinson’s Disease and the people who are caring for them. When I am around others in our PD support network, I have a chance to see things differently. I see the CarePartners struggling and hear them speak of challenges similar to those I am facing. I recognize myself in their stories and begin to understand that, perhaps, we are further along in this journey than I thought.

It was being around my fellow CarePartners that enabled me to ask for and receive in-home care. It is being with these kindred spirits that helps me set reasonable boundaries for myself. Watching them in action and talking with them as we all work so hard to help our loved ones gives me a better, clearer perspective. When I am at home with my husband, I can fool myself that his diagnosis hasn’t changed us that much. Being around our support network, on the other hand, keeps me accountable reminding me that things have and will continue to change and that it’s all okay. Truly understanding and accepting the progression of his illness, and the challenges it brings for both of us, allows me to be a better CarePartner for him and a better person for me.

As my husband’s disease progresses, we look for accommodations that support his changing needs. Often times, I find that these accommodations can be helpful for both of us. Let me share an example. When his tremor became a problem at the dinner table, we found that a spoon worked much better than a fork for many food items. What I realized recently was that if a spoon worked so well for him, why couldn’t I try it too? I now make sure we both have forks and spoons so we can choose whichever is easiest. He isn’t the only one using different utensils and we have both cut back on spills by over 90%.

Another way I try to normalize my support involves his mobility. My husband struggles to get in and out of chairs and in and out of the car. When we were first dating, he was a gentleman and would open doors for me, help me with my chair and yes, help me get in and out of the car. Why should it seem out of place for me to return those courtesies now? If I simply do it without making a big scene or deal, no one else should make a big deal of it either.

We each have particular needs and ways of meeting them. If I can help my husband accommodate to meet his needs without making him uncomfortable, then no one else around us should be uncomfortable either. Naturalizing the activities that get us through the day is my way of being respectful while still providing necessary support.

Can he move any slower, can he speak any softer, can he get in my way any more? Wait, is he napping again! Oh my gosh, what now? My brain reacts to what is happening and even though I know I shouldn’t have these unkind thoughts, they come to me anyway. I do my best to keep them inside and not let my husband see any frustration I’m feeling because I know he is always doing his best regardless of how it appears. It may be natural for me to feel frustrated, but it is not healthy for either of us. He needs positive encouragement not negative comments and I need to find the patience to provide it.

I have always tried to fit too much into each hour of my day which usually meant I was moving fast to get things done just on time. My husband was always early with everything whether it was projects he was working on or meetings. We sometimes clashed over time conflicts prior to his diagnosis of Parkinson’s and it definitely hasn’t gotten better. I still try to do too much and slowing down to be present for him can be difficult at times. I catch myself stepping in more every day, even though I know it’s best that he does as much as possible for himself. It’s quicker and easier when I do things myself and harder for me to watch and wait. 

Doing things for him does make things easier in the moment, but it may also shorten our time together in the long run. Maintaining independence and being capable are essential components on my husband’s journey. Finding the strength and patience to stand by and let him be are components of mine. As his CarePartner, I need to shut down the negative messaging in my brain and remember that he’ll ask when he feels he needs an assist. When I start to feel frustrated, I’ll step away, take a deep breath, count to 10 (or 100 as the case may be) and give him the respect and space he deserves to complete the task on his own. It’s the least I can do, which is actually the best.

This is a very dark thought and not something I like to consider yet it happened to my Grandparents. And no, my Grandpa didn’t have Parkinson’s Disease but he did have leukemia. When he was diagnosed we were all devastated and Grandma prepared herself for the worst. Imagine our surprise when, about a year later she was diagnosed with pancreatic cancer and died within just a few months. Grandpa went into remission and, with support from his three daughters, would go on to live for another decade. This was not the outcome any of us were expecting.

My husband is older than me and has a chronic illness which should mean that I will outlive him. I can’t forget, though, that unexpected things happen. Our future planning needs to be comprehensive. We need a plan that will take care of me if he should go first and we need a plan of care for him should it be the other way around. It’s not enough to say we have money in the bank and I can’t leave this to our kids to figure out after something happens, we need to have the conversations now.

We are connected with a great Elder Law attorney who advised us on protecting our estate and helped us with all the documentation we needed to cover whatever we might face in our future. We review our plan often to make sure nothing needs to be changed and we gave copies to our kids. I also have a tool called the “CarePartner Back-up Plan” that I received from Parkinson’s Resources of Oregon that defines my role and outlines the help my husband would need if I weren’t here. Having this in place allows me to relax and live fully in the present instead of spending my days worrying about what comes next. I know I’m going to be okay, he’s going to be cared for, we’re covered for whatever our uncertain future brings.

I was talking about this with a friend the other day. Her solution for making sure everything gets done is to list those jobs she doesn’t have time for and then pick just one extra task from it each day. She finishes the things she has to do and then, by adding just one additional chore, she is able to whittle her otherwise overwhelming list down. If she has extra energy or time she may tackle more than one, but knows that she doesn’t have to. And, for those days when she can’t even manage one extra thing, she doesn’t worry because she knows she’ll eventually get to it.

Basically her plan is to go beyond a survival mindset and make peace with life being a bit of mess. What needs to happen gets done and the rest happens when it can. There are some things that are on her list that are time sensitive and she prioritizes those but others may sit there for a while. It’s not so different from what I am doing but it’s a plan, not simply chaos. I love this attitude!

So, next time you come to my house don’t worry if it seems a bit dusty or if things are out of place. You can always know that we’ve been bathed, fed, medicated, exercised and rested. Our basics are covered, the rest of the tasks will get taken care of if and when they reach the top of my list.

Oh my gosh, yesterday was a tough day and it all had nothing to do with my husband’s diagnosis. His cousin, who lives 3000 miles away, is having falls and we appear to be his emergency contacts. We were on the phone for 30 minutes with apartment managers and EMT’s while the cousin refused all offers of assistance. It was really frustrating for both of us. Then, my son called to let us know that my grandson is having a tough time in school. Again, I can only watch from the sidelines and give encouragement, but it is definitely adding stress in my life (like I don’t have enough already).

How do I know that all of these outside stressors are interfering with my role as CarePartner? I was thinking about putting this in my blog this morning while I was helping my husband get dressed. When he looked at me and just said “Pants?”, I realized he was sitting there in his underwear, I had forgotten his jeans. We both had a good laugh.

There are always going to be challenges that happen to other people in our orbit that are outside my control. What I can control is my reaction to those things. Understanding my capacity for added complications in life will help me provide support to extended family and friends without taking away from my primary focus which really must stay on us. Accepting that I cannot fix everything I encounter and being able to articulate those boundaries lets me keep my perspective and my sanity. As I told my husband last night, I don’t have to keep all the spinning plates in the air, just the ones directly above our heads.

My husband and I were talking about the things we like to do and he mentioned that he missed playing with the dog we used to have. I even got the last dog to give him something to do when I was still working. He and the dog would go out for walks and I knew he always had a companion here during the day. When that last dog died, I decided no more because of the extra work for me and concerns over tripping for my husband. I wonder if that was a bad decision?

We have a cat named Sadie who is always around but not nearly as playful as our dogs were. We certainly can’t walk her and she sleeps a lot of the time. We interact with her but it’s not the same. Our dogs loved and needed us, Sadie tolerates and uses us.  On the other hand, she isn’t much work. She sleeps on a cat perch next to me while I am writing and cuddles in our laps when we’re watching television. She’s good about reminding us when it’s her mealtime and gives us someone else to talk with and about, which is good.

Having a pet in the house gives me something to think about besides the daily challenges of my husband’s diagnosis. Our Sadie is a distraction and there are definitely days when I need that. She is also a very good listener and will usually give hugs when I need them. She is here for me and doesn’t care if we’re having a good or a bad day as long as there is kibble in her bowl and fresh water for her to drink. Wouldn’t it be great if that were all I had to worry about in my day? Maybe that’s her greatest gift, reminding me that as long as those basic needs are met the rest will somehow fall into place.