Author: cptricia

Pay attention to your loved one when addressing perceived challenges. You may have different views on what needs fixing and how.

I see my husband struggling to do something and I immediately think there has to be a better way. My brain starts working to find a modification before I even realize that he has already moved on from the task. He figured it out on his own without my intervention so I should let it be, but often I can’t. Once my “fixer” mentality sets in, I am focused on a mission. When I find what I consider to be the perfect resolution, I get frustrated when my husband doesn’t seem excited about it and often won’t use it. What’s wrong with him? Why doesn’t he appreciate my help with this?

There is something wrong, but it’s not with him. The problem is, even though I am trying to be the best CarePartner ever, sometimes I am disrespecting his ability to find his own answers. I jump in to fix issues that aren’t problems for him. I let my own perception of the situation take control and then wonder why he doesn’t want to accept my solution. Once again, I’m fixing things that aren’t broke.

In those moments when I feel start to feel unheard and unappreciated, it’s time to step back and really look at what I am doing. Am I not being heard or am I not listening to him? Has my husband asked for help with this particular problem or am I assuming he needs my help? Is this really a challenge he wants me to fix or can he manage without my intervention? Who’s cares more about fixing this issue, my husband or me? Finally, is this really a good use of my time and energy or should I just step out of his way and let him be? I know the correct answers to all of those questions, I just need to resign myself to them.

Exercise is as important for the CarePartner as it is for the person with Parkinson’s.

One of the first entries I ever wrote in this blog was about exercising. It started with “We both need to take care of our physical needs, and that means exercise and healthy eating, so that we are always battle ready.” I didn’t realize at the time just how true those words would prove to be.

My husband needed to exercise to slow the progression of his disease. I now know that my need to exercise was not to maintain, but to build musculature so I would be able to manage the many new duties I am asked to do. Besides the extra tasks around the house, I need strength to lift, load and place the equipment we use every day. It was easy when all he needed for mobility was a cane, now it’s a walker and will someday be a transfer or wheelchair. Hefting those things in and out of the car isn’t an easy task but is made better because I have been working out with light weights and resistance bands. That doesn’t even take into account the other accommodations I handle regularly like bedrails, transfer poles and shower chairs.

I like to think of my role as his exercise coach, but the reality is that I need it perhaps more than he does these days. It takes strength, stamina, and fortitude to make it through without injuring myself. I may complain about working out, yet I know that I need it. I find I usually have the capacity and the ability necessary to meet any challenge thanks to all the effort I have been putting out over the past few years.

Parkinson’s will progress differently for everyone who has it.

Just as this illness presents differently, the symptoms will progress differently. For my father, it was a quick process into dementia and delirium accompanied by freezing and stiffness, he never presented with much of a tremor at all. My husband, on the other hand, is not showing dementia or cognitive challenges other than a slowing of his processing skills, but his tremors became unmanageable early and are only controlled with deep brain stimulation and medication. Since he is not showing any signs of dementia, a friend recently commented that he was doing so well. She was surprised when I said that I agreed especially as he is in the advanced stages of his journey. I think she questioned my judgement because, as she put it, “he still has all his faculties”. My response was that he would probably be one of those people with Parkinson’s who would die with all his faculties, it’s just how the disease is presenting for us.

There are two basic scales for determining where someone is on their journey with Parkinson’s. The first is the Hoehn and Yahr, developed in the 1960s and used to evaluate physical symptoms. It didn’t take into the account the cognitive or mental challenges many People with PD faced. In the 1980s, a new scale was designed utilizing this format to evaluate movement, but adding components that test the mental and mood changes that are taking place. Called the Unified Parkinson’s Disease Rating Scale (UPDRS), it is the one used most these days because it gives a more complete picture of progression.

At any rate, it doesn’t really matter where we are in this journey. My husband most often seems to be in stage 4 to 5 which is the highest range. On his good days, he may even appear to be back in level 3, but I know it won’t stay that way. The day is coming when, thanks to the great research being done in this arena, a medical team will be able to pinpoint where my husband is currently and where he is headed. I’m not sure that would be better, I think I like the uncertainty. It allows space for hope, dreams and imagination, something I would lose if I knew exactly what we were in for next.

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.