Sometimes it’s your loved one’s Parkinson’s that throws you a curve and sometimes it’s not. Be flexible and open to unexpected challenges.

In my case the unexpected came with a fuzzy coat and a bushy tail. I was sitting at my computer reading the paper when I heard a scurrying sound in the bedroom. I jumped up to see what was happening and found the noises coming from inside our bedroom wall. It felt kind of good to bang on the wall and yell as I did my best to scare whatever it was out. Running out to the front of the house, I caught a glimpse of the culprit, a squirrel, making his escape through the attic vent. In a non-PD life I would have simply handed this problem off to my husband. I did ask his advice and he was able to make a couple of suggestions on who we might call for help. This was one of those times when I really didn’t want to take charge but someone had to, so I grabbed my phone and started texting and dialing.

I learned a lot through this process, hopefully things I’ll never have to use again. For one thing, handypersons are not allowed to deal with wild animals (like squirrels) due to state laws. Next I turned to Pest control companies and started to get the same story. I think the person I was talking with recognized my desperation and said that if I knew how the pest was getting in they could put up an exclusion screen to keep it and other rodents out. And he was able to send a tech the same day, hallelujah!

It’s not like I didn’t have enough on my plate before the squirrel decided to move in, but actually figuring out how to evict it was a nice diversion. It gave me an excuse to step away temporarily from the stuff I was already dealing with and face a totally new situation. I had several conversations that day that were not about PD but about squirrel eradication. Plus I have a new skill to put in my toolbox and a great story to share next time I get together with my fellow CarePartners. Like I said, it pays to be flexible.

The emotions that come with caring for a loved one who has a chronic illness can be confusing and difficult to navigate.

I started seeing a new therapist last week. I wanted to talk with someone because I was feeling stressed, a little on edge, and perhaps mildly depressed. Trying to define my emotions was complicated. I know that I’ve been cranky with my husband at times and he doesn’t deserve that. I know that I have felt exhausted, anxious and even apathetic at times, I don’t deserve that. It was time for me to seek professional help.

Our first visit involved a bit of getting to know each other and going over some basic agreements. Then she asked the question, “How can I help you today?” and my tears started. The release of emotion surprised me. It seems that I just needed a safe space and a compassionate ear so I could let go. I was finally able to talk about the edginess, the exhaustion, the challenges. I talked about the anger, the guilt, but mostly I talked the sadness I was feeling watching this disease destroy the person I love most in this world. And she told me that it was okay for me to feel all of those emotions, that I was okay, something I really needed to hear.

I thought I was doing all the right things to take care of my mental health. I journal daily, I work out, I belong to a wonderful Parkinson’s support network. Sometimes doing all you can on your own just isn’t enough. I have another appointment later this week and anticipate visiting with this counselor weekly for a while. And I’m stocking up on tissues so I will be prepared for that next conversation.

Possibly the biggest challenge we face on this journey is not knowing what’s coming next on a daily basis.

I wake up each morning never knowing what the day ahead may bring. I know what’s on my calendar and the things I hope to get done, but I haven’t really known what’s possible since my husband was diagnosed with Parkinsons’s Disease. Because we’re not in charge anymore, his PD is. And things can change quickly based on whether he’s having a good day or a bad day, a never ending question.

What causes good or bad days? Is it a problem with his meds or something he has eaten that interferes? No one can tell us. For my husband, those are days when he doesn’t feel like doing anything. He prefers to call them “low energy” days. We laugh about it because neither of us can remember him having a “high energy” day. There is also the constant worry about him falling. It only takes one fall to throw us schedule off for days. Added to that are the normal aches and pains he has from growing older. When he is less able to function due to low energy or an injury, I have to up my caregiver game. Obviously less on my to-do list gets done.

Life is challenging, life with PD has the potential to be overwhelming whether you are the one with the disease or the one caring for them. What I have learned is to take advantage of his good days to get my things done. I have also learned to accept that there will be days when nothing gets done. There’s always tomorrow and maybe, just maybe, it’ll be okay.

Physical support for your body is just as important as emotional support for your soul.

“Listen to your body whispering before it starts to yell.” I was participating in a Parkinson’s Foundation Mindfulness session the other day and the presenter shared this with us. She was introducing the session for the day and shared that taking time to check in and listen to our bodies can sometimes help us avoid mental burnout. It was an interesting “aha” moment for me as I realized that she was right. If I don’t listen to my body and make sure its properly supported, how can I possibly expect to find the emotional support I need on this journey?

Getting in touch with my body is not an easy thing for me to do. Ask me about my husband and I’ll tell you all about his medical complaints from a sore knee or shoulder to stiffness and swallowing issues. Ask me how I’m doing and I reply “Fine”. It was so nice when the instructor asked us to think about our feet and how they were connecting with the floor. We worked our way up considering all the parts of our bodies and how they were supported, relating to them without judgement. We were passively listening for messages about tension, tightness, stress or pain.

My emotional state is absolutely tied to how I am feeling physically. Relaxing my body releases my mind to let go, even if just for a few minutes. This is also why I enjoy yoga. When I’m focused on my physical state, my mental state can take a break. But, and this is a big one, my body needs to be properly cared for in order for me to be able to truly surrender. That’s why I must find time to listen for the whispers and act appropriately to support not only my body, but also my spirit and my soul.

You can find the Parkinson’s Foundation’s Mindfulness Monday series on their U-Tube channel by clicking here.

Finding “me time” becomes more difficult for CarePartners as their love one’s Parkinson’s progresses. It also becomes more crucial.

It’s Thursday morning at 9 am and I haven’t even started writing my blog for today. I usually have a draft by Wednesday afternoon so my husband can review it for me, he has been my second set of eyes since I started writing. My goal is to schedule it to go live at 9 am on Thursday, I am not meeting that today. I’m sure everyone reading this will understand.

So now I sit down and think what I can say today that might matter? What does my current situation look like? I could write about the patience it takes to be a CarePartner especially as we are waiting for his medical team to get things together and change his DBS battery. I could write about my frustration with what appears to be his stubbornness as I try to encourage him to do what the Speech Language Pathologist says to improve his swallowing. Honestly though, today I have too many things to do and too little time to do them, that’s my current situation. But I will struggle through and get them done because that’s what all of us living as CarePartners do. We don’t have any other choice.

When I started posting this blog, I was finding the time to write three times a week. I was also volunteering twice a week at a local museum and taking daily walks. Looking back at those words, I can see my life as a CarePartner was complicated, but it was nothing compared to where we are now. If only I had known. And that is why I always tell everyone in the early stages of this journey to do what you can while you can, you never know what your future will bring. Find your “me time” whenever possible because you won’t always have the same opportunities. And the further we go on this journey, the more difficult it becomes for both of us.

Sometimes the challenges I face are all about my husband’s diagnosis of Parkinson’s but most of the time they are based in my role as his primary caregiver.

It’s interesting to me that ever since my husband was diagnosed with PD, we are on the same journey yet we are not. We share much due to his disease but our responses to the changes it has brought to our lives are obviously different. He faces the actual loss of physical and mental capacity, I face the loss of my partner in life. He struggles daily with survival, I struggle to pick up the pieces left behind. His battles are direct while mine are more behind the scenes, yet all are just as important in managing our daily routines.

It is important that I recognize these basic differences in our needs. Support in his journey will come from the traditional Parkinson’s organizations but for me it can also come from caregiving networks. I have much in common with other Caring Partners struggling to make it through their days whatever their loved one’s diagnosis might be. While the actual work we do may be different, the emotional toll of caring for a loved one with a chronic or terminal illness is going to be universal. We all face frustration, exhaustion, grief, and loss and can be a valuable resource for each other.

While I am active in PD support groups, I also seek other options. It is vital that I remember PD supports are there because of my husband and his diagnosis, Caregiver supports are there just for me. There are a couple of on-line resources that I use regularly. The help available on these websites is more relevant for what I need, rather than a response to what is happening with him. It is much appreciated advice for me because of what I am facing and not as an extension of his diagnosis.

On-line resources I find helpful as a CarePartner include Family Caregiver Alliance; Caregiver Action Network; even AARP.

Knowing when and how to treat your loved one with Parkinson’s for a non-Parkinson’s condition can be tricky.

We have been dealing with chest colds at our house That means congestion, coughing, and feeling pretty lousy over-all. Neither of us developed a fever so it doesn’t appear to be anything more serious. We tested for covid early in the process and those were negative. To care for ourselves, we’ve been resting and hydrating. I researched Parkinson’s websites to find safe over the counter solutions for chest colds and found guaifenesin for congestion. We are both drinking lots of hot tea and using acetaminophen for body aches. It’s taking a while but we do seem to be showing signs of recovery.

Should we have gone to the ER or Urgent Care? That’s a difficult and personal decision. I know from past experiences, trips to the ER can be more damaging than helpful. And, I anticipate that the only advice they would give us after waiting hours in an unhealthy environment would be “go home, rest and hydrate”. Exactly what we are already doing. They could possibly provide us with a more definitive diagnosis, but does it really matter if it’s a chest cold or bronchitis? Both are treated in the same manner. Heaven forbid they would want to keep either of us in the hospital, I have seen too many of our friends go in with congestion and not come home.

My gauge on whether to seek further treatment is based on something I learned as a young mother. When I see lots of blood, broken bones, fevers, difficulty breathing or unconscious, we head straight to the ER. Falls that we can’t get up from, I call 911 for assistance. Otherwise, I do my best to provide home care and PD safe OTC remedies. Chicken soup and love are still the best cold treatments I have ever found.

Click “What Cold Medicine can I take with Parkinson’s” to see the article I found that talked about safe cold meds for people with PD.

Possibly the most frightening bit about battery replacement with DBS is the name of the procedure. They call it “End of Battery Life of Deep Brian Stimulator”.

Seriously? Does that name not bring all kinds of negative connotations? At any rate, the good news is that we once again get to choose whether to go with the standard or rechargeable battery. Plus, whichever he chooses, he’s going to be getting the newest technology available. Granted it will have be attached to the older probes in his head but he still should garner advantages from advances that have taken place in the past five years, particularly in the adaptive field. The new controller is designed to pick up feedback from his brain and adjust accordingly as it gets to know him. The goal is that it will be more responsive and efficient.

For now we are still at the wait and see stage. We had an appointment with a neurosurgeon and are waiting for the surgery to be scheduled. He needs to see his PCP once we have a surgery date to be cleared for the procedure which should be an easy process. The exchange itself takes only about an hour, but he does have to be anesthetized, always a concern in the Parkinson’s world.

Barring any complications, he comes home the same day. The new device will be turned on and everything should be working as normal. The neurosurgeon did say that with the changes in technology, we may see some different settings on the the device. There will be a couple follow-up appointments with the surgeon and then with our neurologist to make sure all is well. More to come as this stage of our journey progresses…

Deep Brain Stimulation works well for many with Parkinson’s, but does take some attention.

My husband had Deep Brain Stimulation five years ago. It took away almost all of his tremors and we were really quite pleased with the results. The procedure required putting a pair of probes into his brain attached to a stimulator battery pack that rests in his chest. We liken it to having a pacemaker for his brain. At the time of placement, he had the choice of either a rechargeable battery or a standard that would need to be replaced in three to five years. He chose the standard option and we are now at that change point. It’s turning out to be an interesting piece of his DBS treatment.

The only maintenance that we ever had to do is monitor his battery output. We were watching it weekly at first but realized nothing ever changes and those checks dropped back to about monthly. As we reached the three year timeframe, I started talking with his neurologist about when to replace the battery. She told us not to worry, we’d know when it needed to happen. Imagine our surprise when, a couple of weeks ago, we checked the status and got a message from the device to contact his neurologist immediately, his battery was dying.

We both panicked. It was late in the day and I couldn’t reach out to his doctor until the following morning. Needless to say, everything went on hold until we connected. She assured us that there was nothing to worry about, when the message comes we should still have three months of life left on the battery and she had already referred my husband to a neurosurgeon. Now we wait to hear when we can get in to meet them and when they will be able to perform the surgery. And hope the battery holds up until they can. To be continued…

Sometimes you do your best and still things go bad. Don’t blame yourself, blame the situation.

I have a head and chest cold. I cannot quarantine from my husband and even if I could, chances are he was exposed to my germs before the symptoms arrived. It’s a very difficult situation being the live-in caregiver for another human being because you don’t have an escape route when things like this happen. So, I try to avoid sneezing or coughing in his vicinity, I use disinfectant spray and wipes around the house, I am reheating meals from the freezer rather than cooking for him. And somewhere in the middle of all that, I’m trying to take care of myself so I’ll get better. He woke me up with his coughing last night and this morning his cold is fully engaged.

Perhaps I should have masked up when I first started feeling symptoms. Perhaps I should have called someone else to come over and take care of my husband while I went into isolation for a few days. But our family is too busy and our house is too small and, as I said before, he probably was exposed before either of us realized I was getting sick. It was a no-win situation.

We plod on. I take cold medication and he takes acetaminophen to alleviate the symptoms. We hibernate together and I keep sanitizing things hoping to kill any virus present in the air. The only positive aspect is that I am starting to feel better as he is going in the other direction so we’ll make it through. I need to remember sometimes I can do my best and things are still going to go wrong, it’s just the way it is on this blasted Parkinson’s journey.