Even when not actively engaged in care for your loved one, you may find that they are always present in your thoughts.

I think about the Willie Nelson song, “Always on my mind”. My husband is always on my mind, that is to say I am always on alert, listening to make sure all is going well for him. It’s not necessarily a bad thing, but it is also not always a necessary thing. Nor is it a healthy thing for me.

When I am constantly on alert, the stress causes my cortisol levels to rise. Many studies have been done with family caregivers of people with dementia, but I am here to say that the same feelings exist in any person caring for a loved one with a chronic illness. It’s like I am always in a fight or flight mode, waiting for the next disaster to happen. I love those times when my husband takes a nap or sits down to read for a while because I can let go and take a break. I’m able to step into standby mode for a little while which gives my cortisol levels a chance to normalize. And yet I will catch myself looking over to make sure he’s still breathing, how crazy is that?

As a CarePartner, I know I must stay healthy in order to provide the care he needs, but how can I do that when just being here for him may be a threat to my wellbeing? There are techniques for alleviating stress, I know them and need to use them. There are opportunities for me to get away, I must take advantage of them. Finally, I can maintain an awareness of my own feelings and do my best to keep my husband always on my heart, just maybe not always on my mind.

For more information on what cortisol is and how it functions in our bodies check out this article I found on the Cleveland Clinic website entitled simply Cortisol.

Find simple processes to help you get through the unexpected challenges Parkinson’s brings.

I wake up each day wondering what will happen today. I wonder if my husband will be having a good day or bad day and will that impact any plans we might have. I wonder if any additional challenges we had yesterday will still be present. I wonder what surprises Mr. Parkinson’s disease might have in store for us and it worries me. I have developed a simple way to alleviate these concerns that I call my Four A’s.

Assess, Accept, Adapt, Adopt, these Four A’s have become a format for moving forward in my journey. It started way back when my husband was first diagnosed and we had to Assess our understanding and abilities as changes started coming. We had to learn to Accept the new direction in our lives thanks to his diagnosis of Parkinson’s. Many of the things we now do are Adaptations of what we used to do, modifications that we have Adopted to make life easier.

It starts every morning with a simple question, “How are you feeling today?” Once I have his input, I can start looking at our schedule and we can discuss whether it is reasonable or might need to be changed. I know that things can change mid-day so I always have to keep a bit of flexibility in any plans. I Assess his capabilities today, Accept where we are in this moment, Adapt to fit the situation and Adopt the new reality moving forward. I use this on a daily basis, sometimes on an hourly basis. Other times I use this same process when bigger life changes have happened. It’s calming to know that I have a system that works to help me move forward in such uncertain circumstances.

Finding and accepting help is a relief, finding good help is even better.

I heard a lot early on in this journey about creating a team and building your support network including family and friends. The reality is that our children are all working and have very busy lives, they can offer support and occasional help but don’t have time to come in on a regular basis. Most of my friends are also my age and facing similar challenges in their lives, they don’t have the time or the energy either. Thank goodness there are people who are willing to do this difficult work as paid caregivers and thank goodness we have our insurance that covers it!

We have been working with a local agency for about a year now and are on our second caregiver. The first one was adequate, she would come in and be with my husband, which allowed me to get out and take care of business or just go out and take a break from time to time. It was such a relief to know that I could leave the house for a few hours and he would be safe. As time went on however, I realized that we needed more than she was capable of giving. We now have a different caregiver and he is wonderful. Beyond being here with my husband, they have conversations, take walks in the neighborhood, and he does more household chores than I ever expected. This young man has fast become a vital member of our team. I cannot say it enough, if you have insurance coverage, don’t be afraid to use it. If you don’t, look at alternative options and take advantage of them. Those regular breaks, even for just a few hours, make me a better CarePartner and help preserve my mental and physical health.

My husband is a smart man. When we met and married, he knew that the day might come when one of us would need more care than the other was able to provide. He insisted that we sign up for long term care insurance when it was just becoming a thing, and it has proven to be a very good decision. I always felt we were betting against ourselves and our abilities to care for one another, he had a better understanding of the possibilities of aging and disease. Thanks to his wisdom, we’re both able to get the help we need now, I cannot thank him enough for that.

Create a soothing practice that helps you get back to your best self and use it throughout your day.

Whether it’s releasing pent up emotions by hitting a pillow, yelling out the back door, or finding a quiet spot to meditate for a few minutes, finding an action that gives you solace midday or any time things are getting too intense can be such a lifesaver. My life gets stressful at times and if I don’t find a way, maybe multiple ways, to relieve that stress I am going to take it out on my husband or my poor cat. Neither of them deserve it!

I was reminded of this today with an email I get every day from a program called DailyCaring. Today’s brief listed 14 ways to relieve caregiver stress. I won’t go into all of them but a couple really hit home with me. The first I connected with was number 3 on their list, do a mini-self massage. They suggested simply massaging the palm of one hand with the thumb of the other. I gave it a try and found it to be amazingly calming. I closed my eyes and added their number one suggestion of deep breathing before switching to the other hand. Within just a couple of minutes I had regained my sense of calm and was ready to face my day again. Quick and easy, simple things that should actually work in my day.

There were a lot of other ideas from listening to music, relaxing in a hot shower or taking a walk, all things that I do when I have the time. They also suggested writing, something I obviously agree with. The other one that really caught my eye was to make myself a mantra. I actually have several things that I say to myself throughout the day, positive affirmations that help me survive. A couple of my favorites are “I can do this” and “it’s all okay”. Because even when things look the worst, I know that I am strong enough to get through whatever we are facing and it truly is all okay.

You can sign up for daily tips for caregivers and much more at the website DailyCaring.com.

Music, whether making it or listening to it, can be a great tool in your journey as a CarePartner.

We had someone speak at our support group the other day about the benefits of music for People with Parkinson’s. She had come by to invite us to a newly forming drum circle for people with neurological disorders including PD, and shared a lovely video of a current program in California to let us know what it could look like. It makes me wonder, if this activity is so good for my husband wouldn’t it be equally beneficial for me? So, I turned to the internet to see what I could find about music and caregiving.

It took some time and patience on my part but I finally found an article on webmd.com that actually spoke about the benefits of music for the caregiver. The article listed physical health and mental health benefits for seniors who participated in a music therapy program including lowered stress levels, something all CarePartners could use. I still wonder, though, what about the more informal approach? Can I just play music throughout the day to help both of us get through our difficult times?

I go out for walks in the neighborhood and I often accompany those walks with smooth jazz music. It helps me relax and let go of the worries of the day. My husband has a huge collection of vinyl and CDs from the past 60 years that we never listen to. I know that it would take a bit more effort to set them up, but perhaps it would be worth it. Maybe we set aside time each day to listen to just one or two of his albums. It could serve as a pleasant background for naps or reading, might bring back some warm memories, and should be calming for both of us. It certainly can’t hurt.

Visit this link https://www.webmd.com/healthy-aging/music-therapy-for-older-adults to see more of the article I mention above.                                                                                                                                                

Parkinson’s is a progressive disease which means your loved one’s capabilities and their needs will change over time. Try to keep a realistic perspective on what you are doing and what is really helping.

My husband is working with a new Physical Therapist and she is wonderful. We arrived a bit early for his appointment the other day and he was sitting in a chair waiting. When she called him back, I started to help him out of the chair when she turned to me and said “no, let him do it.” Sure enough, he was able to scoot forward and lift himself right up. It made me start thinking, how much of what I do is necessary and how much is because we are stuck in certain patterns in our roles?

We got to practice a bit more of this that same day because I had to take our car in for maintenance and was stuck at the dealership for about two hours. Normally, I would have tried to get a shuttle home or schedule for a day when we had our caregiver. Neither of those things worked for this appointment, so my husband was at home alone and he did fine. It was the longest period he had been by himself in the house for a while and he seemed to enjoy the peace and quiet. I know I miss having the house to myself, why wouldn’t he?

Having a new professional working with us has brought a different perspective into our lives. Her focus is not on what I can do to make life easier, it’s on what he can still do for himself. It has been like a much needed kick in the seat of my pants. In my attempt to be a “good” CarePartner, I have forgotten the most basic rule of never underestimate his capabilities. I’m a hoverer so it will be difficult to step back and let him be, but I am going to try. I think it will be good for both of us.  

Creative thinking and adaptability are important skills to develop when working with someone who has a progressive illness like Parkinson’s Disease.

It is essential that my husband be encouraged to do everything he can for himself at every stage of his illness. It is also important for me to find ways to get certain things done. I have to admit that sometimes I just go ahead and take on a task because it is easier for me than it is for him. But, am I really being the best CarePartner I can be when I do things out of expediency rather than considering what is truly the right choice for both of us? I don’t want to limit his control over life, nor do I want to add to my burden by taking on additional chores if I can modify the task so he can still do it for himself.

This came up recently because he has been fighting with lower back pain. It has become increasingly difficult for him to stand any length of time. He used to stand at the bathroom sink on Saturday mornings and sort his medications for the week ahead. A couple of weeks back he told me that he needed me to take that over because it was too painful. I did it for him last week, but the whole time I was thinking that there has to be a better solution.

And it was so simple! I found a small box, put all his prescription bottles along with his weekly containers in it, and presented them to him at lunch on Saturday. He was seated comfortably at the breakfast bar and it took less than 5 minutes for him to sort them out. This also helps us both be more aware when it’s time to reorder meds. My part became simply carrying them back and forth from the bathroom. It’s a workaround that enables him to continue doing this task rather than pass it over to me. As they used to say, it’s a win-win for both of us.

CarePartners are also at risk for cognitive challenges and decline.

I wrote recently about the cognitive challenges my husband faces thanks to his diagnosis of PD, but he is not the only one. I sometimes joke about the fact that he has physical challenges so I get to be the one who develops dementia. That way we can take care of each other as we age. I know it’s really not funny because I am seeing a definite decline in my abilities, especially when I am tired, which is most of the time these days. While my cognition isn’t being tested by medical professionals, it is being tested on a daily basis by life happenings.

I am getting older and things are slowing down. Added to that, my role as CarePartner is often stressful and I find myself encountering tasks or decisions I haven’t faced before. Multi-tasking was never my strength and now it is my constant as I care for husband, house and self, usually in that order. Sleep interruptions are common and I seldom feel that I get enough rest which definitely impacts my brain’s ability to function well. Life sometimes, quite literally, seems to be kicking me in the brain.

It scares me, the thought that I might actually develop a cognitive disease like Alzheimer’s, because what would happen to us then? Who would care for my husband, who would care for me? How would we manage? I talk to my doctor regarding my concerns and she listens and tells me not to worry because that worry will just add to the stress I am already feeling. So, I take my fish oil supplements and I do my brain games and I exercise regularly. I try to get the sleep I need and I take breaks to give myself a chance to recuperate. I do what I can to keep brain and body functioning and healthy knowing that I cannot stop the inevitable. That’s a lot to mull over on a Wednesday afternoon, I think it’s time to take a nap and give it all a rest.  

Cognitive challenges are not only those related to dementia and will probably come to your Person with Parkinson’s at some point in their journey.

Not something anyone wants to hear but a truth nonetheless. Our brains are the working center of our being and Parkinson’s sits firmly in the brain, so how could it not impact cognitive abilities? This topic came up recently in one of the Davis Phinney monthly CarePartner Meetups. The conversation was that cognitive decline happens to all of us as we age. The added challenges of living with Parkinson’s should make it evident that brain functioning is going to be slower and more demanding. The general consensus among the CarePartners and the Neuropsychologist on the panel was that most People with PD will face some form of cognitive decline during their journey. For my husband it is proving to be mild so far.

Where do these cognitive challenges originate? Is it simply that he needs to focus so intently on everything he does that he becomes exhausted and has no energy left? Or, is his executive functioning actually impaired due to the disease or the meds he is taking? Does it really matter which, or is it simply enough to recognize that this is another component of his diagnosis and work through it whatever that means?

There is a great article on cognitive decline written by Jennifer G. Goldman, MD, MS, Assistant Professor, Parkinson Disease and Movement Disorders at Rush University Medical Center in Chicago that I found on the American Parkinson’s Disease website. She explains the different types of cognitive decline I might see in my husband and talks about testing that should be done along the way. I question her comment that not all people with PD will face cognitive decline, I think she’s either mistaken or is defining this symptom differently than I do. My already overtaxed husband’s body and brain are being constantly asked to multi-task just to survive, it seems inevitable to me that things are going to decline. Just another gift from this disease that seems to keep on giving. Or maybe I should say taking away?

Information on the monthly Davis Phinney CarePartner Meetup can be found on their website at Care Partner Resources and for more on Cognitive changes and Parkinson’s, visit  Cognitive Changes on the APDA website.

Pat yourself on the back just for getting out of bed this morning, you deserve all the positive feedback you can find in your day.

Let’s face it, life is challenging. Getting older is not a lot of fun either. Then add caring for a loved one with a progressive illness. It’s amazing any of us get out of  bed each day, yet we do. In my case, I understand that alongside the challenges I will face today, I will also find moments of joy. Each new day brings a promise of pleasant as well as difficult times and I wouldn’t want to miss those. So I congratulate myself on my resilience as I climb from those warm covers and get busy with the tasks of the morning.

It is not unusual for me to beat myself up for what I think I am doing wrong but I seldom take the time to count the number of things I do right in a day. I remember grumbling at my husband yesterday, but then I also helped him with his shoes and rubbed his feet for him. I helped with his physical therapy exercises and put away his exercise mat. I gave him a kiss for no reason at all other than I loved him. If I put all my daily infractions in a bucket and then put all my accomplishments in another, I know which would fill up first, why is that so difficult to acknowledge?

I believe that we are hard wired to remember our mistakes as a safety measure so that we don’t make them again. Whatever the reason, it is those missteps that haunt me in the middle of the night, so I am making a conscious effort to be more aware of things I do well. As it was said so brilliantly by AA Milne in the Pooh books, “You’re braver than you believe, stronger than you seem, and smarter than you think.” I think it’s time we all start patting ourselves on the back more, don’t you?