Even as I write this I realize that no matter what I am doing these days, I am always multi-tasking. One part of my brain is always watching and listening to hear what my husband is doing to make sure he is safe. It is my alert system and the only way I can shut it down is to get out of the house and away from the situation either by taking a walk or doing yoga. It takes an activity that fully engages all of my senses for me to really let go.

The fact that I am always on alert means that anything else I add is multi-tasking. I am sitting here at my computer writing and yet I still listen for my husband moving around in the other room to know he is okay. I have laundry going so that means I am doing at least three tasks. I am thinking forward to a meeting coming on Friday, is that a fourth? Oh wait, here’s the cat, did I feed her? It is no wonder that I reach the end of the day with things still undone when I am always juggling so many at a time.

I consciously try to put everything aside when I am working with my husband. We exercise together later today and for the hour we are in that room all I will be focused on is the workout. I need to be present in that moment to make sure we are both safe, I cannot afford any distractions. If only I could remember this in all the things I do. Perhaps I could avoid cutting my fingers while preparing food, forgetting to return calls, or getting lost when driving somewhere. My mind is so busy, I need to calm it so that I can take care of the two main tasks I have, caring for my husband and safely surviving my own life.

Okay, I know it is a bit crude but isn’t it factual? There are days when I just feel like that beetle. Everything I try to do simply leads to more that needs to be done. The load gets heavier not lighter, how can that be? I am afraid that if I stop pushing for even a moment it will overwhelm and crush me, but stopping is exactly what I need to do. I need to stop, think about what I am doing, and find a better way to go. And, that better way usually involves asking for help or sharing my challenges with someone else.

It’s not easy to admit that I am not Wonder-woman. I should be able to do it all, shouldn’t I? After all, there is an old adage that says “you’re never given more than you can handle”. What if handling it all  includes knowing when to give up and call for help? What if it means being wise enough to recognize that I have limitations and that pushing beyond those puts me and my ability to care for my husband at risk?

I have a wonderful husband who is still somewhat capable and can help me figure out how to face certain challenges. I also have a support network of friends and family who are there for me whenever I ask, I certainly don’t have to walk this journey alone. I have developed a network of community supports, people who can help me with the bigger chores I can’t or just don’t want to handle. There are people who are willing to take on some of my challenges, even if it is just by listening to me whine over a cup of coffee, just as I am there for them. So, maybe it’s time I stopped being the beetle on this uphill battle and started sharing the challenges and the love that comes along with it.

My husband has balance and stamina issues. I decided that he needed a cane to use for outings. I was sure it would be safer and allow him to walk farther. We purchased one together, allowing him to try several and then choose the one he liked best. We brought it home and it sat in a corner for over two weeks before he touched it again. I suggested on several occasions that he might want to use it and even gave him a bad time when we were in public and he didn’t have it with him. I tried handing it to him once or twice as we were getting ready. It was when I gave up and stopped bugging him about it that he actually picked it up and took it on his own. When I gave control back to him, where it really should have been in the first place, he decided to give it a try.

I struggle with trying to make his life easier, even when I don’t really know what that might look like. I want things to go smoothly so I encourage him, perhaps too much, to try assistive devices that I have heard about or that we see other people using. I forget that he needs to be challenged at times so he can keep his skills intact. If everything becomes easy, there is no work involved and his condition will worsen.

I am not going to stop bringing things home that I think might help but I am going to try to step back and give him the space to explore how and when they could be useful. The cane may become something he needs all the time at some point, for now it is simply an aid for when we are going to be walking or standing for long periods of time. After all, he knows better than I do what his capabilities are, how strong he feels each day, and what tools he might need to help him get through.

My medical vocabulary has grown on a regular basis since my husband was diagnosed with Parkinson’s and especially as he develops new and different symptoms. I never knew, or really cared, what dopamine was or how it worked in our brains before. I now understand just enough about neurotransmitters and synaptic connections to know that they are not working like they should for my husband. I have learned technical terms for his symptoms and the medications that are needed to treat them, things like what agonists and anticholinergics can do in combination with carbidopa and levodopa. I have had to learn much about neuro-this and neuro-that, definitely more than I ever wanted to know.

One of my first lessons was about the loss of muscle control known as ataxia which resulted in tremors and clumsiness. In his case, this presented along with bradykinesia or muscular slowness. He can no longer multi-task thanks to bradyphrenia, a slowing of the processors in his brain. Another long-term issue is xerostomia or dry mouth. He dealt with this for years before we realized it could be a piece of his Parkinson’s. He developed microphagia, or cramped handwriting. My husband had excellent handwriting skills prior to this illness, now even his signature is illegible. He lost his smile to hypomimia, the facial masking that comes with Parkinson’s Disease but thankfully his deep brain stimulation surgery gave that smile back to us.

Then there is a whole family of “D” words. They are the ones that define some of his biggest struggles. When he gets tired he sometimes displays mild dyskinesia or uncontrolled muscle movements. He has dystonia in his feet which causes painful morning cramps. He has dysarthia which slows and slurs his speech and can interfere with his ability to swallow. Swallowing issues are also referred to as dysphagia. There’s a term we often run into called dysregulation and it can be applied to other functions to show their failure. One example is thermodysregulation, his body’s inability to regulate his internal temperature. He is always feeling either too hot or too cold. And of course there are 2 other “d”s that can be a factor in PD, dementia and depression. So far we aren’t dealing with either of those.

I never realized that I would need to have such an extensive knowledge of medical terminology when he was first diagnosed. It is essential that I understand what his doctors are saying if I am going to provide the support he needs. I am getting better at asking questions of his neurologist and the rest of the medical team but my real go-to reference is the Davis Phinney guidebook entitled “Every Victory Counts.” I keep a hard copy on my desk and look to it regularly to clarify where we are and to prepare for where we may be tomorrow. You can find a copy for yourself on their website at Every Victory Counts Manual – Davis Phinney Foundation.

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.