We have had an interesting week. It started on Monday when we did our taxes and learned that we owe the government about $500. It’s been really cold out, so much so that I am getting a low-air warning light for the tires on my car. I’m hoping that will resolve itself when things warm up. It’s too cold to go out for a walk, we are trapped in our house. There were a couple of minor home maintenance issues- a ceiling light in the kitchen went out and the smoke detector started beeping, of course in the middle of the night, so I had to change the battery. Then, our heat pump decided to stop working. It took 2 days, 2 heat pump technicians and an electrician before finally getting that resolved. We had lots of stressful events that have nothing to do with PD, yet I have to face them with grace and patience. It’s exhausting.

If we think about my role as CarePartner, I struggled to keep up. Meals happened mostly on time; I missed a bit of one of his exercise classes but was close by. I did my best to keep the temperature in our home comfortable and to keep things running on an even keel. I don’t know if it was related to all the stuff happening, but my husband took a fall in the bedroom. He has a sore shoulder but is otherwise okay. I know it was not my fault that he fell, but I still feel guilty. Perhaps if I hadn’t been distracted by all the other stuff, I would have been paying more attention to him. Then on Thursday, after spending the entire day dealing with repair people and keeping my calm, I lost it with my husband. He was doing something nice for me and I grumped at him for no reason. I apologized but the damage was done. More guilt piled onto an already stressed-out mind.

I get hit with a lot of unexpected stuff as a CarePartner. When things go wrong, I often feel like I am trapped between my husband, who used to take care of these things, and actually tackling the problem. It’s difficult to explain but it seems very much like a no-win situation. Feeling responsible for his well-being adds another layer of complexity to an already difficult situation. If I remember to breathe, to stretch, to stop for just a moment and think about all I am being asked to do, I realize that I am okay. I am not wonder woman, but I am a good CarePartner working to do things the best I can. I just need to remember how much I am trying to handle and know that somehow, we’ll make it through.

I have been a CarePartner for over a decade now, but that certainly doesn’t make me an expert on how to make it work. I have been sharing my story in the hope that it will help me figure things out and that maybe someone else can use some of it. It is not meant to be an advice column, simply tales of what is happening in my life. I write about my mistakes and also things that I did that seemed right for us. I always want to caution that just because something worked for me, it doesn’t mean it will work for anyone else.

Everything I write about comes from my experiences and perspective. I am not a medical professional and have had minimal training as a CarePartner, taking what is available through local organizations. Whenever I write about something beyond my capacity, I always try to make sure that I quote the sources where I found the information. I use reputable web sites and do my best to share additional resources whenever that is applicable.

I wanted to write this to make sure that we are all on the same page. I would never dream of telling anyone how to live their lives just as I would never appreciate having anyone tell me. Take what I write and use it if you can, or feel free to ignore it totally. My hope is that it will be as helpful for someone to read as it is for me to write. Perhaps it will give you something to think about or you may identify with one of the absurd situations I find myself in. Please know that when I see people are reading my words, I am reminded that I am not on this journey alone. We all have to find our own best pathway, thank you for coming along as I struggle to find mine.

There are days when I am not as patient as I should be, and I tend to get short tempered with my husband over things he cannot control. I want to hurry him along or get him to speak more clearly or, “for goodness sakes, stand up straight!” I become upset with him for those wonderful things Parkinson’s Disease has brought into our lives. I waste my breath being grumpy at him for the challenges of PD instead of blaming the illness. It is not okay for either of us.

He does not need to hear me complain about all the things he isn’t doing right. As a friend told me once, “I know I need to lose 20 pounds, I don’t need anyone to remind me”. The reality of my husband’s life is that he knows the challenges all too well and is probably bothered by them much more than I will ever know. He is doing the very best he can in each situation he faces. My snarky reminders are not helpful.  

I don’t need to focus on the negative aspects of his illness, that only wastes my energy and makes things worse. If I let go of the constant corrections, it makes room for me to be more positive and encouraging. There is a lot happening that is good and I should be accentuating those things. My husband is intelligent, strong and resilient. He will have good and bad days as he works to cope with whatever this disease throws his way. I need to remember to be angry at Parkinson’s and the situation, not the man doing his best to make his way through.

I know this sounds somewhat negative, but it is a fact in our lives. My husband, like approximately 80% of other people with Parkinson’s Disease, has developed issues with swallowing. The medical term for this is dysphagia. It seemed to get worse after his DBS surgery, but I am not sure whether it was a result of the surgery or simply normal progression of the disease. What I do know is that he doesn’t go through a day without at least one episode of choking. It is usually water, which I find really interesting since it seems that it should go down easiest.

The complications of dysphagia are scary. Difficulty swallowing can interfere with my husband’s ability to get his pills to go down. His inability to swallow certain foods could impact his diet if he makes unhealthy choices that are easier to swallow. Choking puts him at risk of aspirating food or liquids into his windpipe which could even lead to aspiration pneumonia. By the way, according to many studies aspiration pneumonia is the leading cause of death for People with Parkinson’s. It is important that I take his choking issues seriously.

We have done all the right things. He attended several sessions with a speech and language therapist, had a swallowing study done and practices his huff and puffs three times a week. He knows to tuck his chin when swallowing and to take small bites or sips. No matter what he does, it is still a challenge to get all of the muscles involved in the mechanical process of swallowing to work in conjunction with each other. So, it has become my job to be present and keep an eye on those choking episodes. I make sure that his medical team knows about them. They may not be able to fix what’s happening, but together we can monitor it to make sure we are ahead of any further complications that might come up.

For more about dysphagia see What is dysphagia, and how does it impact living well with Parkinson’s?  – Davis Phinney Foundation.

I make mistakes all the time. Thankfully, I have my husband here to remind me of the critical ones like when I forget to feed the cat. He is a good back-up and usually doesn’t rub it in. The ones that really bother me are the ones I make in caring for him. It’s the times when I am late with his meals and screw up his pill schedule or when I try to help too much or am not there when he really does need me. It’s those times when I get grumpy with him but shouldn’t because he is doing the best he can. I mess up at least once every day and stewing over these things could easily change my demeanor which would only make things worse.

Instead of stewing, I have decided to try something new, forgiving myself. When I make a mistake, I will first acknowledge it and apologize to my husband. Then, I will think of all the times I was in similar situations and handled things well. I will remember that for every failure there have been multiple successes. I will take a moment to reset my spirit and then, let it go.

Our minds are hard-wired to remember mistakes so that we don’t make them again. We are supposed to learn from them, not carry guilt forever because they happened. I wake up at night and find myself ruminating over things that happened years ago, things I thought I had gotten beyond. With this new mindset of self-compassion, I hope that I will not be waking up 10 years from now remembering that I wasn’t a good enough CarePartner today. Instead I hope that my memories are filled with the positive things I did on this journey and the fact that I always tried my hardest to do what was right.

I have come to believe that my mental and physical health should be part of every conversation I have with my husband’s medical team. I know that he is the one who has been diagnosed with this disease, however I share in the load. Seldom, if ever, do any of his doctors ask how I am doing. I am great at telling them his struggles but mine are never part of the equation. All they see is their patient, not the one who is standing beside him in need of their help too. How do interventions or treatments they are recommending impact my ability to care for him? Is there a different approach that might work better for both of us? Can a treatment plan be designed to take my circumstances into consideration as well as his needs?

Last year, my husband’s doctor suggested that he might benefit from another round of physical therapy. This would have been the third or fourth attempt with limited success. It would have meant scheduling multiple appointments, getting him to them, and then nagging him to do the homework afterwards. I don’t think our doctor had any idea what they were asking or how much hassle is involved. I looked at my husband, then at the doctor and said “no”. At that point in my life I did not have the capacity to add one more thing especially since it was something we had tried already with little or no success. I just couldn’t do it.

How can I address these issues within the current context of care? How do I help his medical team understand the importance of considering my health and capacity as a component of his care plan? I think I took the first step when I actually said no to recommended PT. Now, as his symptoms progress, I need to keep talking about what reality looks like in our lives and our home. If I am called upon to do more, I need to make sure that everyone knows exactly what that means. If his treatment plan causes me harm or leaves me needing treatment, then it is not working for either of us. I need to be able to provide care for him and care for myself at the same time which may mean simply reminding the doctors that I have limitations too. Then we can all look for options that work well for both of us.

Family came over yesterday. We’ve started doing monthly get-togethers, simple dinners and visits to stay connected. It’s a manageable group of about a dozen if everyone shows up, which is seldom. We usually have around 6 or 7 adults and 2-3 kids. This time it was our son and his wife with our grandkids and my stepson, just enough to fit around our dining room table. We meet on a Sunday evening for a couple of hours so as not to wear anyone out. There are no expectations or obligations. People come when they can and leave if they need to, it seems to be working for now.

I originally started these get-togethers because, even though we all live within driving distance, everyone has such busy lives we were only seeing each other on major holidays. As our world started to shrink thanks to Parkinson’s Disease, I felt it was especially important that our family be a part of our journey. These get-togethers are a way to escape the PD world and be part of something bigger as we see our kids and their kids moving out into the world. It’s fun to hear about their adventures and to share in their lives in whatever capacity we can. Those who can’t make it call or text to let us know why they can’t come which keeps all of us connected.

Our get-togethers start at 4 with dinner around 5-ish which fits with my husband’s meds schedule. We usually meet at our house so he is in familiar territory and can rest if he needs to. I try to plan meals that are easy to eat and not too messy so we don’t have a lot of cleanup afterwards. I remember that my husband may need assistance and try to help in a respectful and open way so that everyone can be cognizant of challenges we are facing and overcoming together. Finally, I work to make sure that my husband is included in the fun because Parkinson’s may have slowed him down but he is still here. And he is still a great guy to be around, I want to make sure they all get a chance to know that.

I have a hard time remembering that it is not my job to do it all. I see something that might be a challenge for my husband, so I swoop in and take care of it. I take away his opportunities to try to fix things himself. I would hate it if he did that to me. For me to try to be his buffer to the world also sets up an unrealistic set of expectations that I will be there always and that he won’t have to face any difficulties. This is nonsense and needs to stop now.

We had a situation just today. We were out shopping stopping by a drive through on the way home to pick up burgers for lunch. I ordered his without pickles as I always do. When we got home, he set out lunch while I put away our purchases. By the time I joined him he was a third of the way through his sandwich and found a pickle. I picked up the other burger and, sure enough, it was marked no pickle. I think he expected me to swap burgers with him, but instead I just smiled and proceeded to unwrap and eat the other one. It was obvious he had made the mistake and it was time for him to face the consequences. Eating one slice of pickle is not going to hurt anyone.

We all have the right to tackle our own problems, then ask for help should we need it. We all have the right to complain when things are not going the way we had hoped. He complained about the burger, but by the time he realized there was a problem it was too late for a fix. I could have swapped burgers with him but what does that say about me as a CarePartner? When I take care of everything for him, I interfere with his opportunities for responsibility and growth . A good CarePartner is one who doesn’t try to do it all not only because we shouldn’t, but also because we can’t. Instead, we walk alongside the person we love in the hope that together we can make this journey a little bit easier for both of us.

I recently asked my husband to help me by applying lotion to my back, an area of dry skin I can never reach. He was more than happy to do it, the process feels good, and it gives us a few moments of reciprocity as he becomes the helper and I am the one needing help. It doesn’t hurt that we do it just before bed when I am only partially dressed. These days I like to find that sense of intimacy and closeness whenever we can.

He often needs my assistance during the day, it is nice that I can return the favor by asking him for help in this task. It has become a nightly treat and is bringing some balance back to our relationship. It also reminds me of earlier times when our relationship was new and he would regularly massage my back (and more) for me. What happened to those times?

As his disease progresses, I will have more opportunities to help him with personal grooming. I am thankful that we have found something he can do for me. Caring for someone with a chronic illness can feel unilateral and directed. Having my husband taking care of my back brings a more bilateral approach and a feeling of shared connectedness. I truly feel more like a CarePartner instead of giver when we are both involved in caring for each other.

In order to take care of myself I need to be conscientious about finding time for both of these in my day. It’s tough, and some days are better than others, but I need to remember that I cannot care for either of us if I am exhausted. I need to take breaks and I define those as-

Active recovery- those moments when I am still on alert but able to breath a bit and let my husband manage for himself.

This is a term I hear a lot in exercise programs, that time when I am moving at a lower intensity to restore my body and remove toxins that have built up during intense activities. High intensity sessions are similar to when I am helping my husband with a task or perhaps taking care of something that has gone haywire. Stress levels skyrocket. Afterwards, I really need to let go and take a breath to actively recover. I can’t let go completely because I remail on-guard wondering what will happen next, therefore it is active recovery.   

Rest- when I can actually let go of all of the responsibility whether someone else it there to care for him or he is asleep and I know he is safe. 

Rest often means respite, getting completely away. My husband is still able to be alone for short periods of time which gives me opportunities for respite. I can leave him for an hour or two to go to my yoga class or to go for my volunteer job at a local museum. Even then, I keep my phone close by and watch for texts or calls. My best opportunity for rest is at night because, thankfully, he sleeps very well probably better than I do. I might be lying there awake, but knowing where he is and that he is okay releases me from the responsibilities of care.

Taking breaks is at the heart of my self-care program. Carving out more time for myself is challenging, instead I try to recognize and acknowledge the things I am already doing. I don’t have time for more “me” activities in my day, I just need to be more intentional about the ones I am doing. Recovery and rest, I can do this. If not, I will know it is time to ask for help.