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.

Socializing with your PD Network doesn’t always have to be about Parkinson’s, it can be fun too.

We belong to a monthly support group that is sponsored by our local Parkinson’s organization. It was our first real connection with the local PD community and has been a great resource for us on this journey. At our last meeting one of the newer members mentioned that she enjoyed our meetings especially when they were “fun”. She particularly mentioned our recent holiday event with a sing along. We made sure to leave time for everyone to check in but the focus at that meeting wasn’t just on PD, it was on having a good time.

The primary support group that we are a part of tends to be more structured. A fellow CarePartner and I decided we needed something more and started a monthly breakfast gathering. We split the couples up, sending our hubbies to another table. It opens the door for different conversations and they always complain that we laugh too much. Finally, when some of us still wanted more opportunities to connect we added a monthly “Happy Hour” at a local brewpub. It is easily accessed and serves non-alcoholic drinks for those who want it and they have great snacks. There is no agenda and we leave the PD talk at the door.

Parkinson’s is a very isolating illness. My husband doesn’t socialize at all unless it is with family or at these pre-arranged Parkinson’s gatherings. I believe it’s because he recognizes this is a safe place where people accept and understand the challenges he faces. He has a chance to interact with people other than me or his caregiver. It is a great way for us to bring back some of the fun.  

Explore challenges that you face as a partnership and, whenever possible, find solutions that work for both of you.

I have taken over control of our banking, not so much because of my husband’s cognitive state but more because it’s difficult for him to handle physically. Phone calls, balancing accounts, making sure everything gets paid on time, just the general stuff that it takes to manage our home have become challenging and it is easier for me to take care of those tasks. That doesn’t mean he isn’t part of the process, we discuss how and where our money is spent and he has input on all the important decisions.

This practice involves negotiation and compromise, respecting that each other’s opinions and needs are equally important. Also, as his Parkinson’s symptoms progress, I sometimes find the need to invoke executive control. His reasoning and decision making can be impacted by PD even in the absence of other signs of dementia. Granted I know his disease slows thinking processes, but the uncertainty inherent in a life with PD also seems to make him more hesitant in making some decisions.

I would love to be able to split the duties again, have him be in charge of specific things while I manage others. Unfortunately, those days are gone. Instead we are facing a time when I will be making all the decisions and simply telling him about them. I am not looking forward to that and hope it is a long way off. In the meantime we keep talking, negotiating and working things out as best we can.

Find wisdom wherever it may be. It may be useful to your situation as a CarePartner.

I read my horoscope in our local newspaper on a pretty much daily basis and most days I get a good chuckle out of it. Today, for example, I am told not to be envious of what a friend might have but go and get it for myself. Seriously? But, occasionally whoever writes the predictions strikes a note. I have one such clipping hanging by my desk and I’d like to share it with you.

“If you never let the pendulum swing, you don’t get the rebound energy. You don’t get restored you just keep getting stretched thinner. Rest isn’t about a break from progress- it’s what makes progress possible.” (From Your Horoscope By Holiday Mahis of Creators Syndicate, published in the Columbian Weekender Edition, August 23-24, 2025)

Wow talk about prophetic! As a Parkinson’s CarePartner, I need this reminder on a regular basis. I especially like the part that talks about getting stretched thinner, I certainly know how that feels. There is never enough time, I always feel like there’s more to be done. It’s so easy to get caught up in everything we have to do that I forget all about the things I want to do.

Today I am going to try and let my pendulum swing, even if it’s only finding moments of rest to gather up some of that rebound energy. Let’s see where it takes me.

Mindfulness is a proven stress reliever and can take different forms based on what works for each person.

Psychology Today defines Mindfulness as “a state of active, open attention to the present”. I always thought that meant formal meditation, a tool that has always escaped me. My overly active mind would not stop thinking and shut down no matter how much I tried to push those random thoughts away. It was when I broadened my thinking to include activities that tie me to the present moment that I was finally able to understand and appreciate the experience of being mindful.

I was participating in a breathing exercise once when it started to click. If I focused on my breath and how my body felt instead of trying to clear my mind entirely I was able to relax for a brief period. I found another opportunity during a movement class I attended with my husband. The instructor would take us through a stretch and then encourage us to stop and think about how our muscles felt. It felt great being in the moment, I was being mindful and didn’t even realize it. Maybe my practice needed to include some kind of movement?

Guided yoga has become my weekly mindfulness routine. I listen to my trainer and focus on following her instructions with my body. I have to stay physically and mentally connected to each moment, each breath. The lesson always finishes with Savasana, or corpse pose, where she calmly talks us through a full body check-in. For that 50 minutes the challenges I face as a PD CarePartner don’t exist and life is just about connecting with me. Self-care at its best.