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.

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.                                                                                                                                                

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.  

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.

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.  

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.

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?

As my  husband’s symptoms progress, my role changes. That’s just the way it is. Before his Parkinson’s diagnosis, we were both somewhat involved in local politics and engaged in community activities. I miss that work but understand that I only have so much energy to give. I still do what I can to let my opinions be known regarding local and national issues. That may be displaying signs in my yard or writing letters to the editor of our local paper. It is what I can do and allows me to remain active while still meeting my responsibilities at home.

This balancing act means that I may not be attending city meetings in person, but I can watch them on the internet to stay up on issues that matter to me. I may not be able to knock on doors or make phone calls for my favorite candidates, but I can make financial contributions and vote my conscience when the time comes. I can participate in conversations with friends and family when appropriate which gives me the chance to explore and express my views.

Being a CarePartner isn’t all I can be. It is one piece of what I do, granted the most important piece right now. There is more to my life and I need to be sure that I respect that. I try to stay involved with the outside world to the extent that I can. I like to stay informed about what is happening because it may very well impact me and my family. I remember that just as I have a responsibility to care for my husband, I also have a responsibility to care about the world we live in. Community involvement may look different, but it will always be on my to do list. Maybe just a bit further down than in the past.

My husband has a fitness tracking device that he wears on his wrist. We got it thinking it could be a good aid for tracking his workouts and were excited to see what other benefits it might offer such as a heart rate monitor or fall detection. The price was right, he was able to get a free one through his insurance program.

Unfortunately, the design of this free model is too small for my husband to manage. His hands, thanks to Parkinson’s, cannot manipulate the small screen to get to the additional programming. I often see him whacking the device just to get it to tell him what time it is, he isn’t able to access even the basics like tracking his steps. Also, this model doesn’t detect falls or place emergency calls and we aren’t sure about heart rate, it’s too complicated for us to figure out. The only good thing I can really think to say about it is that it has a long battery life. I’m not sure why he still wears it other than it’s become a habit.

Technological advances are great as long as the people making them consider the audience they are serving. My son has a tracker just like this and it works great for him, but then he is only 40 years old. I am not sure who in the government decided that this particular device would be a good fit for seniors, but I think they might want to revisit and consider something a bit more user friendly. In the meantime, we have learned that just because a tool is designed to serve a purpose, it may not serve our purpose.

I was looking at myself in the mirror this morning thinking about how I need to get a haircut which reminded me that I need to find a good hairdresser. Thinking along those lines lead me to the thought that I could use a good nail tech for those mani and pedicures, heck maybe just a personal groomer would be nice. But why stop there, I could really use a personal shopper, a housekeeper, a cook. If I had a personal assistant they could coordinate all of this for me as well as handle my finances and appointments. It would be great to have a chauffeur to drive me to those appointments and care for my car. While I’m at it, I could really use a groundskeeper to manage our property and a handyman to care for our home. Then it struck me, what I really need is my very own CarePartner!

My husband, bless him, used to do so many of these jobs for and with me. Unfortunately, now it is all my responsibility to make sure they get done for both of us. Maybe that’s why half the time I look and feel half-done. By the time I make sure he is fed, showered and dressed and our home is livable, I may or may not have any energy left for me.

The true absurdity, and what makes me laugh the most, is the fact that I think I could add all of these tasks to my already busy life and be successful at any of them. So, if the next time you see me my hair is overgrown, my clothes are wrinkled and I seem a bit frazzled you’ll understand why. But wait, relief may be on the way. I forgot to mention my personal masseuse who should be arriving any minute now … if only!