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.

I was watching a PD CarePartner webinar the other day and they were talking about anger and guilt, two feelings I have come to know well. Of course there was the continual reminder that it’s okay to be angry at Parkinson’s Disease but not at my husband for the many things that are out of his control. And it’s that reality that takes me from my feelings of anger to feelings of guilt. So I learn to put a smile on my face and stuff all the emotions away rather than deal with them. If I just don’t react at all, then how can I do it wrong?

The thing that I forget is that my husband is angry too. He hates what is happening even more than I do and if I can acknowledge my feelings, it could give him a chance to acknowledge his. We could share in the anger at whatever is happening rather than letting it come between us. It would be a healthier way to deal with some of the frustrations we face every day and could ultimately bring us closer in our journey.

I have been at gatherings where we all joined in to shout “I hate Parkinson’s!” before the presentation started. I recall a day at Rock Steady Boxing when we wrote all the symptoms of PD on a white board and then threw rubber balls at it. Both of those were such freeing experiences. It isn’t enough for me to remember to be angry at the disease, not the man, I need to actually put that into words. If I can share those words with my husband, then even better. We can both shout to the treetops how much we hate this disease and what it has done to us. Great for stress relief and voice work; I just hope the neighbors will understand.

I have added a word to my tool box thanks to my husband’s new Speech Pathologist through the Parkinson Voice Project and their Speak Out! Program; that word is “intent”.  Their entire program is built around helping him relearn to speak with intent. They define speaking with intent as focusing, concentrating, being purposeful and mindful, being in control and putting forth a conscious effort. When I can’t hear or understand something he says, my task is to remind him to “speak with intent” and give him another chance. He has been working with them for less than a month and we are definitely seeing a positive outcome.

Watching his success in this area made me wonder, what if he were able to expand this skill to all he does? What if he were to stand and walk with intent? What if he were to eat with intent? What if he were to do everything with intent? Parkinson’s Disease forces him to live in the moment, this concept can give him back some control of those moments.

I am so tired of asking him to speak louder, stop mumbling, walk carefully or stand up straight. Instead I am going to start reminding him to be intentional in all he does. Walk with intent, speak with intent, live with intent. It is a more empowering message that engages him fully in the activity. And it reminds both of us that he is always doing the best he can in the moment and that is all anyone can expect. Maybe it’s time for me to practice living with intent too?

Visit Parkinson Voice Project to learn about the Speak Out! program and their goal of Speaking with Intent.

It happened again. Someone who isn’t living my life decided I had the time to take on more of my  husband’s care. And so, I have become his speech pathologist. It is only supposed to be for the next month, but I know that if he wants to retain what he is learning he will be asked to continue his daily practices forever. I wish they had spoken with me instead of just telling him that I could do it. Oh yeah, and some training for the part I am expected to play would have been nice. I was the one who initially contacted the program, perhaps they could have shared what they would need from me then?

I love it when the professionals working with my husband decide he needs something new and that I am the one who should provide it. There was the Physical Therapist who designed a daily workout and then told him that I wouldn’t mind helping him with it. The same PT told him that if I would massage his legs every night before bed, it would help eliminate his leg cramps. Another task that got added to my day.

It isn’t that I don’t want to help my husband nor that I begrudge him these things I am being asked to do. My problem is that the professionals don’t consider that maybe they should consult with me first to make sure I have the time and capacity to add on more. They see us as a team, which is good, but they don’t have a clue what my part in that team already entails. They don’t know that I have a full schedule of tasks in caring for my husband and our home, they only see their piece of his treatment and that “it’s only 20 minutes a day.” Perhaps the next time it happens I should turn to them and ask which of my tasks they’re willing to take over? If they can come by and cook our dinner, I’ll have plenty of time to take on more of his care. Just saying….

The sentence above may sound somewhat selfish or harsh but that is not at all where I am going with this thought. My heart has been heavy this past week because we lost another friend from our Parkinson’s Community. It was a fellow CarePartner this time, someone who had lost her Person with PD and was finally going to have the opportunities for travel she postponed until later. Unfortunately by the time later came, it was way too short.  

I am not sure what I am advocating for here. Perhaps it is a reminder that I can’t know what the future will bring so I better get busy and make sure every day I have matters now. Maybe it’s accepting the challenges of our journey and still finding ways to fully engage in life in spite of my husband’s diagnosis. I may find that taking on some temporary additional burdens will allow us to still have fun. I’ve been putting off our annual spring getaway saying that it’s just too much work, but maybe I need to revisit that concept and recognize that the joy it brings will outweigh the difficulties?

Life is short. I can’t assume that I will have time later for fun, I need to make sure it’s happening now. And, if the opportunity includes my husband then all the better but even if it doesn’t, I can’t put it off. I don’t want to wait for later because I realize now that later may never come.