I’ve mentioned this before, the anger I feel about the life Parkinson’s has taken away from us. Our retirement plans that have gone completely out the window.  The life I expected to live versus the life I find myself living. I’ve also talked about the necessity to direct that anger at the disease and not at my husband. This has been on my mind a lot lately and I think it may be time to revisit this topic.

Anger is a step in the grieving process but I feel like I may be stuck there. My journey is long, thankfully, and I still have my husband with me. There are those who would say this should be enough. How do I explain to them that I am grateful, but I really miss the other things we should be doing. I wake up in the middle of the night and wonder where we would be if it weren’t for his diagnosis. What would be different in our lives besides just about everything?

Unfortunately loss and anger are going to be there for the rest of this journey so I might as well get used to it. I know my husband didn’t ask for this life either and he would much rather be traveling the real world with me instead of the world of PD. That doesn’t make the loss any less painful. So, rather than let the anger overwhelm me, I acknowledge the feelings and find creative ways to express them either through my writing or physical exercise. And in the middle of the night I close my eyes and go back to sleep so I can dream of all those trips we will never get to take.

My husband had a minor procedure done this week, a skin tag removed from a delicate area on his body, and it took about 10 minutes in the doctor’s office. After the doctor was done, the Medical Assistant handed me a packet of gauze, a plastic bottle and the assurances that aftercare was simple. Just rinse the area with warm water often, pack the wound and it should heal in about 2 weeks. I expressed my concerns that this is not an easy area to keep clean but she assured me that I would be able to do it as she packed the supplies in a paper bag and opened the door to send us on our way. Yes we will manage it, but what I quickly learned is that no, it is not easy.

This is not the first time this has happened. I understand that the hospital is not the best place for my husband to recover and that I, as his CarePartner, have become an alternative to a visiting nurse. Two minutes of instruction in the doctor’s office is supposed to provide me with all the training I need to provide care that even our paid caregivers aren’t qualified to do. It adds tasks to my already full days and stressors that keep me awake at night. Last night I was tossing and turning most of the night worried that I wasn’t doing things well enough and wondering what to do if he developed an infection.

This practice angers me and frustrates me because it makes me feel inadequate. I am learning to push back. I let the doctor and their staff know my concerns regarding aftercare. I ask for any supplies they can share, in the above case I got enough gauze to last the first day and a bottle that comes in really handy for rinsing the area. I would have asked for a set of gloves but already have them at home. I tell them I am worried so they won’t be surprised when I call back with more questions as his recovery proceeds. This is just another job that I get to do without training thanks to my husband’s diagnosis.

I have learned over the years that saying “no” to my husband is hard but necessary if I am going to be able to get anything done or have any time for myself. That also applies to saying “no” to myself regarding his care. We have caregivers who come to our home twice a week and yet, when they were here, I caught myself stepping in to help him with tasks that were too personal or too delicate. I had to take a breath and remind both of us that these people come here expecting to be caring for him and to give me a break. It doesn’t work unless we are all on board and let them do their jobs.

This concept also applies when it is just the two of us at home. My husband has a pretty good idea of when to leave me alone but there are times, such as this morning while writing this blog, that he decides he needs something done. It may be something that can’t wait, often it is not. Whatever I am doing gets interrupted and seldom gets finished. I know his care has to be a priority so I always respond. Once I know what he wants, I can decide whether to put him off until later.

Saying “no” can be harsh so I try to find alternative ways of putting it that soften the blow. I may ask my husband to let me finish what I am doing so I can focus on what he needs to have done. Sometimes it’s simply saying “I’ll be with you in a minute” or “let’s talk about this later, okay?”. When saying no to myself, I remember the importance of leaving my husband alone to complete certain tasks and to respect the abilities of our helpers before stepping in and doing their jobs. We all have a role to play in this journey with Parkinson’s, mine needs to be less rather than more as I figure out how to say “no” graciously and make it stick.

I am taking a different approach to my writing today and hope you appreciate it. I have been dealing with some minor plumbing issues and have run into interesting challenges trying to get them fixed. Trying to care for my husband and my house becomes exasperating at times. When I do finally call for help, it means that I have reached the end of my rope. The following poem came out of my attempts to hire a plumber. And by the way, the sink is still dripping.

Not a Plumber

I am not a plumber that’s why I’m calling you today.

I have a faucet that’s dripping, please don’t turn me away.

You see I’m old and tired with too many things to do

And I am really hoping I can depend on you.

When you’re here I have a that toilet that gurgles every night,

I know it shouldn’t make that noise, something just isn’t right.

There’s a sink in my laundry room that needs looking at as well,

And the drain to my washing machine has an interesting smell.

I know these jobs are small and unimportant to you,

But they are driving me crazy! Is there anything you can do?

Other plumbers that I call encourage me to do them on my own.

Perhaps I could, but I don’t want to, so I’m still on the phone.

I understand you’ll have to charge me and I really do not care.

Since having you do these chores keeps me from pulling out my hair.

Because I’m really not a plumber and I don’t want to be.

Won’t you PLEASE get me on your schedule as soon as you are free?

According to my Merriam-Webster’s Collegiate Dictionary, diplomacy is defined as “skill in handling affairs without arousing hostility.” It’s the actions and thoughts behind my smile on those really tough days. I could point out all the things that are going wrong but hold my tongue knowing nothing my husband is doing is deliberate, it’s just Parkinson’s. The advantage in this approach is that it actually helps me rethink what’s happening as I work to keep myself in a positive mindset. And it acts to lessen my stress.

A good diplomat knows how to safely and positively negotiate difficult situations. As I get to take over more of the duties around our home, I have opportunities to practice my negotiating skills. My husband and I don’t approach tasks in the same way or on the same schedule. Convincing him that I have things under control even though it’s not the way he would do them is interesting. There are some tasks we can still do together, others that I know I need to do when he is napping or otherwise engaged. Then there are things I do his way to avoid conflict, agreeing simply to avoid aggravation.

Diplomacy particularly comes into play when facing transitions in our journey. I can only imagine how difficult it must be for my husband to feel he’s losing his mobility and independence, yet when it comes to safety there are things that must happen. First it was driving, more recently using a cane and then a walker. My take on using a diplomatic approach throughout these changes meant being respectful and acknowledging his feelings. I did my best to give an honest assessment of where we were and then presented options that allowed him to feel some control in the process. My husband is still able to listen to reason, something I am grateful for each and every day. I think diplomacy looks very different when dealing with PD dementia, but suspect it will be an even more useful tool should we ever reach that stage in our journey.

Charlie had an episode a while back. He said he was really tired on a Thursday when we went to bed and couldn’t get out of bed the next morning. He didn’t want me to call the doctor but I finally did that afternoon, they never called back. He couldn’t make it from the bed to the bathroom without help. He couldn’t feed himself. He couldn’t roll over in bed, and I wasn’t strong enough to help him. How am I going to provide care for him when I don’t know how?

I wrote those words back in 2017 and they are still true today. I have learned a lot more about his condition but things still happen and I find myself lost. And it seems I am not the only one. He has  been dealing with bowel issues for months now, had been seen at an urgent care facility and by his primary care doctor. She finally referred him to a Colorectal Surgeon who diagnosed an impacted bowel. A suppository and a couple of really crappy days (literally) and we seem to have finally found the solution. Now, how do we keep it from happening again?

It is so frustrating trying to care for my husband when even the medical professionals can’t figure things out. I wish I had a magic wand that I could simply run over his body to discover where the problem is and how to make it better. Instead I do the best I can to keep him comfortable, healthy and happy. There are always going to be complicating factors with this disease and I can’t blame myself for not recognizing them all. I am his Partner in this journey, not his doctor. I can advocate for him, I can love him, I can’t fix everything we face. Accepting that reality is a hard but necessary component of my journey in caring for a loved one with a chronic illness.

We definitely have more conversations about my husband’s bowels and digestion than I ever expected thanks to his Parkinson’s Diagnosis. This sounds somewhat gross but it has become a constant worry at our house. The disease itself slows down his intestinal tract and causes constipation, then the medications we use to treat that condition cause diarrhea. It’s a vicious cycle.

After going through a particularly difficult couple of months, we visited his Primary Care Doctor. She suggested a bland diet, which we tried for a few days. He didn’t like it and it didn’t really seem to make a difference. I decided it might be helpful to keep a food diary. Perhaps we could figure out what he was eating that was triggering his system. I created a tabular meal plan format and started writing down everything he ate including snacks. At the bottom of each day I add comments about output. Tracking what goes in versus what comes out has been interesting.

I’d love to say that we’ve figured it all out but know that it’s an ongoing battle. What I am learning is that recording what I feed my husband makes me think more about food choices resulting in a healthier diet. I don’t keep track of volume, I just concern myself with value. I’m not trying to be the food police, just a positive influencer presenting better alternatives that will make both of our lives easier. I’ll know we’ve made it when we have to find another topic to discuss besides “what does your poop look like today?”

We originally learned this in a movement class for my husband. It is a technique he can use to combat freezing in his gait. I am not sure whether he has tried it or not, what I do know is that it has become very helpful for me in my role as CarePartner. When anger, frustration, exhaustion, whatever gets in my way, I remember this mantra. I stop and take a breath; I think about what is happening in the moment; I shift my mindset into a healthier perspective; and then step forward into whatever it takes to complete the task at hand.

Using this technique forces me to act with thought, not react in desperation. I make better choices when I remember to go through this simple process. It doesn’t always lead me to the best outcome, but I have a much better chance of doing the right things when I take that moment to consider the options first. I can stop the stress spiral, take control of my responses and provide better care for my husband. It’s a winning solution for both of us.