Try to be understanding when your loved one wants to do things they really shouldn’t, especially if they are watching you struggle to do those same tasks.                                                                                        

We recently had a small painting project that I wasn’t comfortable completing so I reached out to our neighbors to see if they would be able to help. The couple were happy to do the work for me and did a much better job than I would have managed on my own. I was very grateful to them but, It also helped me realize how my husband must feel watching me do things he used to do. It must be just as difficult for him to see me muddling through his former tasks as it was for me to watch the neighbors that day. Even after handing the task off to them, I wanted to be out there helping.

One conversation my husband and I have often is about bushes we planted in our backyard. He can no longer handle trimmers safely so caring for them has become my job. He always kept the bed tidy whereas I trim once or maybe twice a year depending on the bush and how fast it grows. He has decided that maybe I shouldn’t be climbing up into the flower bed to trim them back at all, I might fall. He wants me to let our garden guy do the work for us (perhaps thinking he’ll do it more often?), whereas, I enjoy getting out there and whacking on things. It’s a great stress reliever and gives a real feeling of accomplishment once I’m done. But is it really about me doing it at all or the fact that he can’t anymore?

I know gardening wasn’t his favorite activity, but it was his to do and he did it well. Does he feel a loss when he has to sit and watch me doing what were once his tasks? Does it trouble him knowing he can’t get out there and help me? Perhaps I need to approach these conversations with compassion rather than look at them as a power struggle. It may not be as much about who is doing the work as it is about who is still able to do the work. Yard work, whether he enjoyed it or not, may just be one more thing that Parkinson’s has taken from him. 

Meeting a new medical professional happens often with Parkinson’s. Preparing ahead of time can be very helpful.

My husband has changed Primary Care Physicians twice in the past 6 months. The first time was our choice and we were happy with the new doctor. Then he decided to move and we were given over to a different doctor within the same clinic. We are also in the process of setting up some in-home physical therapy for my husband to see if it will help rebuild his leg strength. So far we’ve met with a Nurse Practitioner and are looking forward to meeting his PT.  As these changes take place, we are encountering lots of new people who will be helping care for him. All of this has imvolved several “get to know you” conversations.

One thing that my husband always says when meeting a new provider is “I want to be treated like any other patient. I want you to set aside my Parkinson’s diagnosis and look at me instead.” While some  of the practitioners are only connected to us because of his PD, it doesn’t mean they should close their eyes to other things that might be happening. It is too easy to blame everything on his Parkinson’s and not look deeper to see what else might be going on.

We prepare for these conversations in advance by printing a current list of all his medications and making sure it’s accurate. We talk about what we each want to see from the upcoming visit and what we might need from the new practitioner. We create a list of questions or concerns to have ready for the discussion so nothing is missed. By doing just a little bit of prep work ahead of time the visits go much better and my husband gets the care he needs and deserves.

There are several great checklists online, we particularly like the worksheets found in the Davis Phinney Every Victory Counts Manual  or on the Michael J Fox Foundation website.

The road ahead with Parkinson’s is uncertain and challenging. Having conversations about possible upcoming decisions can smooth the pathway later when they become real.

Looking back on our early years, I was not sure what to expect after we received this diagnosis. My father was diagnosed with Parkinson’s way back when so I thought I had a clue. I was so wrong. Our journey, my husband’s presentation of the disease, has been completely different from what my father faced. What I did know, however, was how ugly it could be and we talked some about that. I had watched my parent’s struggle and wanted better for us. Thankfully, our relationship was already based on regular communication and weekly check-ins so discussing his PD was folded into those conversations.

We discussed how his tremor and stiffness might impact his driving before it became an issue, always focusing on the physical ramifications of this illness. When it came time, it was an easier decision for him to stop driving because we had talked about safety concerns and alternatives. When he needed to stop climbing ladders, cooking, using electric tools, he was open to these limitations because we had already discussed them. Safety and the restrictions of his Parkinson’s Disease were always the reasons, never personal deficiencies. He was not to blame for the challenges we were facing.

Our latest conversations are around how to make sure he is receiving the care he needs. What will happen if we reach the stage where I am not able to care for him or, heaven forbid, if being at home is not the safest option? Parkinson’s Disease brings difficult decisions for both of us. Talking about them before actually having to make them puts us on the same page. It also lets me know what he wants moving forward as well as gives me permission to make those decisions alone should that time come.

Advocating for your loved one may mean being persistent and making sure they are heard.

We met my husband’s new Primary Care Doctor last week. It is the second change in the last six months and I really like her. It was obvious that she had gone through his file before our meeting and was ready to learn more. She actually listened as he told her he wanted to be treated just like any other patient, not like someone with Parkinson’s. And when we left, he had a plan of action that made sense for him, I think this is a good change.

Unfortunately not all members of his medical team are as willing to listen. He has been receiving treatment for a sore knee from an orthopedic PA and we had an appointment with her yesterday. She was expecting to give him a cortisone shot in his knee and even when he told her the last one didn’t work, she kept on prepping him for the injection. I finally had to stop her and say, “you heard him tell you he doesn’t want the injection, right?” She looked at me with a strange look on her face as if to say, well, why are you here then?

I try very hard to let my husband speak for himself when at his appointments, however, I also need to make sure that his wishes are being followed. That can mean taking things to the extreme and asking for a new doctor as I had to last year, or simply stepping in and making sure the professional is listening as I had to yesterday. My job as CarePartner is to make sure he gets the care he wants and deserves. That means advocating for him to make sure everyone hears what he has to say. Sometimes I have to be the greasy wheel to make sure best care happens. 

Adventures can be great but can bring unexpected consequences.

I decided to take my husband out yesterday afternoon. A local winery advertised live music on their patio and they make great brick oven pizzas. It was something we had done many times before, just not recently. I didn’t understand how much the challenges of this activity might have changed for us. We took my husband’s walker, but the walk into the winery is longer than he is used to and we had to stand a few minutes to order before going outside to a table. The chairs were metal without cushions, uncomfortable and hard to move. He chose a sunny spot, I got him settled in and finally, there we were.

We enjoyed our pizza and cider as we listened to the live music. It really was a lovely way to spend a sunny afternoon. We were only able to stay about an hour before my husband was ready to come home but it was a good break for both of us, however on the drive home he became really quiet. Once we got home he napped for over an hour, didn’t want any dinner and was out of sorts the rest of the day.

What we figured out was the combination of a single glass of cider and the sun were perhaps too much for his system. He was dehydrated and exhausted after just one hour. He had mostly recovered by bedtime and slept really well. If we do this again we’ll take his transfer chair, he’ll have a soda instead of cider, and we won’t sit in the sun, no matter how tempting it is.

Acceptance is a never ending process.

Just when I think I’ve figured things out, something new happens. Parkinson’s is a never ending journey of learning and acceptance for me as a CarePartner. We met yesterday with the care manager from the agency who provides our in-home care to update my husband’s care plan. We started with these folks three years ago yet so much has changed. I don’t always see it, the changes come on and get assimilated into our daily lives. I accept the new challenges as they come and figure out how to move forward.

The woman from the agency was surprised to see transfer poles in our home. We discussed his activities of daily living and many thing needed to be updated. She didn’t know that my husband was using his walker full time now, according to her paperwork he was using a cane. There have been changes due to balance issues. When we originally met his needs were definitely less intense, I hadn’t realized how things have progressed.

This journey is unique and unpredictable. I never know from one day to the next whether we are going to have a good day or a bad day. I wake each morning and prepare myself for whatever may come, it’s all that I can do. If my husband can face whatever challenges PD brings to him today, then surely I can accept whatever that means for my role and stand alongside to support him.

Clear and specific communication is important when working with someone who has Parkinson’s Disease.

I was helping my husband with his shower this morning when I realized that I couldn’t reach his shoulders. I started to ask him to stand up straight, which never works, but instead said “Can you raise your head towards the ceiling.” The specific instruction was easier for him to translate into action and I was able to finish washing his back. I used this idea later in the day when I was attempting to help him off the couch. The saying we were taught was “nose over toes and up he goes” but it wasn’t working anymore. I decided to be more specific and asked him to bend forward until he could see his toes. This move brought his upper body weight forward and made helping him up much easier. Our new saying is simply “look for your toes”.

This disease is a trickster convincing my husband that he is standing tall when he actually isn’t, convincing him that he’s speaking loudly when he is whispering. It has his perceptions all out of whack.  My pointing these things out doesn’t help, but asking for exactly what is needed in the moment can get us to a positive result. Specific, clear, even step by step direction at times gives him tools he needs to be able to move and act appropriately.

Good communication is a vital component of our relationship and it is also a vital component of helping my husband safely and successfully achieve his activities of daily living. As Parkinson’s makes him process his thoughts differently, I must think about communicating what needs to happen differently. Speaking directly, clearly and keeping these challenges in mind, I find I am learning new phrases that are respectful and reflect dignity for his situation.

It’s not always going to be about Parkinson’s.

My husband is having a lot of knee trouble. He even woke me last night and asked for an ice pack in bed because it was hurting so much. Of course it’s his stronger leg, the one least affected by his PD. Unfortunately, the pain gets in the way of his walking and both his legs are getting weaker as he isn’t using those muscles. It’s also changing his ability to get up and down and he is no longer able to do even one sit to stand. It’s a real concern for his long-term abilities.

He’s worked with his PCP and an orthopedic specialist and no one seems to have an answer that will bring him relief. They’ve tried shots in his back and his knee. He would have temporary relief that probably was because of the lidocaine injection they give prior to the cortisone. He has worked with Physical Therapists for years, again with little or no positive outcomes. My husband is looking for a way to move without pain that doesn’t involve surgery. We are convinced he has some kind of soft tissue damage but no one wants to hear that because they don’t know how to fix it. I am at the place where I am ready to ask his medical team about a referral to a chronic pain specialist. We have to get a handle on this before he loses the use of his legs totally.

There are those in the medical field who remind us kindly that he does have Parkinson’s Disease and that chronic pain often comes alongside that diagnosis, especially in the later stages. That answer doesn’t work because it sounds too much like giving in to the disease, something my husband has never done. We see his new PCP next week and go back to the orthopedic specialist the week after. I am crossing my fingers that one of them might have a clue. Because this time it isn’t just Parkinson’s.

Consider what responsibility means in your caring relationship with your loved one and set expectations accordingly.  

I came across a reading recently that talked about the difference between being responsible to someone and being responsible for someone. It was a concept I had never really taken time to consider. Is there a difference between the two and, if so, how does that play into my role of caring for my husband? Does the belief that I am responsible for my husband take away from his independence whereas can being responsible to him give it back?

I am reminded of a conversation I had with a fellow CarePartner about the challenges we face. I said that I feel I am called upon to do things I didn’t sign up for as a wife. She pointed to her ring and said “in sickness and health”. For her the conversation was over. I think this is similar to the question of being responsible to or responsible for. If I am responsible for my husband, I am doing everything for him and basically taking control of his life. I am treating him like a child. If I am responsible to my husband, I am working alongside him to make sure everything is taken care of while still recognizing my own limitations and needs. I am treating him like the adult he is.

It is valuable for me to step back sometimes and consider what I am doing to manage our lives and what I could let go of. There are times when it is best for me to take control but there are also times when I do it simply because it is easier. Being responsible to another human being may not always be the easiest path, but it is best for both of us.  

If being a Parkinson’s CarePartner wasn’t enough, there will be times when life throws you a curve. Don’t fret because you can’t possibly be ready for everything that happens.

Writing this blog has been therapy for me. I can write about the things that are complicating our lives and know the people reading these words will understand. It’s a great way for me to work through feelings and frustrations. Imagine my upset when the last piece I wrote got lost somewhere in the on-line blog machine that hosts my site and I couldn’t figure out what had happened. It was a major curve in what had been a pretty good day.

I am not a huge techie and suddenly I was seeing all kinds of ugly outcomes. I just knew my blog had been hi-jacked, but why anyone might want to do that didn’t really make any sense. I tried to reach the host site, but they weren’t available by phone and emails were taking too long. I jumped into a dark hole with both feet and was ready to delete the entire blog and close the site. My loving husband  finally suggested that since I had reported the issue it was time to step back and let the professionals do their work before making any rash decisions.

The next morning I finally got my answers. It seems there had been an internal glitch that was redirecting posted messages within the host site and several blogs were impacted including mine. I was assured that no one had hi-jacked my site or done anything nefarious and that they were working to correct the problem.

The lesson I gleaned from all of this was not to over-react. Life is too out of control already and when I felt I had lost one more piece, I lost it myself. Thankfully, all is back in order and the blog can continue. Getting upset didn’t do me any good and things were cleared up in a timely manner. So, my message for today is when life throws me a curve, I’m going to try to act appropriately and keep on doing those things that matter most. We’ll see if I am able to stick to that.