Caregivers have issues, too.

Caregivers have issues, too.

Here we are, caregivers for others who have some form of dementia. We know lots about it. Many of us are involved intensely in our loved one’s life plus the activities of the Alzheimer Society or similar. We spend time learning more so we can be the best caregivers we can be at any moment, every single day.

But have we given that same dedicated attention to ourselves?

Have we done more than be sure we are showered and shaved so we can shower and shave our loved ones? Have we had time to think about the arthritis in our hands, knees and toes, while worrying about, and caring for, the aches and pains of our loved one’s eyes, stomach or feet? Have we taken time for our annual physical with our own doctor, in my case a different doctor than My Love’s doctor, as promptly as we get our loved one in to see his doctor for every little nuanced change that comes that we don’t know how to handle?

Besides being sure we get respite, time to breathe between emergencies, or between learning responses to our daily unexpected behaviors, have we taken care of our own aching back, our own swelling legs and feet? Have we taken time to be tested for whatever we are due for this year, maybe breast cancer or reoccurring skin diseases?

In my case, I have recently felt the re-emergence of myasthenia gravis, a rare, chronic, autoimmune, neuromuscular disorder that I have lived with, in varying degrees, since 1956. I am not sure many know this. I don’t talk about it often. But, today, during my weekly call, I was talking to a leader in a local health/wellness company who deals on a regular basis with seniors and keeping them healthy. When I mentioned I thought maybe myasthenia gravis was returning in the form of muscle weakness to my legs again, she let me know she was not familiar with MG.

HOW EXCITING! I had an opening to lead her to my new website, Myasthenia Gravis Insights, created expressly for the purpose of shining light on myasthenia gravis, beginning with June, Myasthenia Gravis Awareness Month. I was ecstatic…success…I could tell someone who had never heard of it. After all, that is my purpose!

That was number one who learned. Perhaps you will be number two and three. I know there are many who are still discovering. I know there are many more with muscle weakness still searching to see where their own symptoms might lead…hopefully, beginning in discussion with their health care provider.

But as part of my endeavor to tell caregivers to look after themselves, I must tell myself, as well.

I thought this disease went into remission in 1981. It might have, but maybe not 100%, I realized recently that I never had checked! It was a time of great turmoil and change in many aspects in my life, and so I thought…well you know now… I thought the changes were so great that my myasthenia had gone away! I was so excited, I never went to see a doctor for confirmation.

I totally, 100%, believed that when the bad in my life disappeared, so did my disease. I stopped taking my pills, waiting until I thought I needed another, which never seemed to jump out at me and say, “now.” I never have taken another. I just thought I was 100% better—either remission or not. It never occurred to me that remission could be 90% or 80%, or that I should see a doctor to confirm. I moved to a new location, stated a new life—not really taking time to recognize I was not 100%—until now!!! After recent years as a focused caregiver, with less of ‘my life’ on my plate, the importance of my own health, along with a nudge from reality, I had my major ‘aha’ moment. I knew I screwed up forty year ago. Now I must follow-up.

Looking in the rearview mirror now, what I believed to be true might not have been true. I have always had trouble walking since falling in the race where MG began sixty-five years ago. But the difference between the worst of times walking, even with medication, and the period when I thought I was in remission was so dramatically different that I was so sure it was gone.

In today’s world of caregiving, I now know I have not taken care of myself as well as I should have throughout the years. Most times life has been so good, I’ve been happy to make it to the next year, all the while never thinking to finish checking on MG. I just let it slip. Was I really that busy, really that over-involved in my life but not in myself? I’m finally making a correction when I see a neurologist in January of 2022 – forty-one years later. That date is coming quickly.

This post is a red flag for you, a caregiver or friend of a cargiver-STOP and look in your rearview mirror to see if you have left any health issues unfinished!

My job now, maybe it’s penance, beyond confirming the value of self-care for caregivers, is to introduce as many as possible to myasthenia gravis so that during the month of June, Myasthenia Awareness Month, they, and you, can tell as many as possible…just the name and symptoms. Send them to the site Myasthenia Gravis Insights. The site sells nothing. It diagnoses nothing. It treats nothing. It only gives very basic information to get searchers started on their journey, or to help with those who may have been searching for six years as I was. It only offers suggestions to see a doctor if any symptoms seem familiar.

I hope you will take the time in June….and maybe again later. THANK YOU. Judy Shone

Caregivers have issues, too. (c) 2021 Judith Allen Shone

Six Caregiver Considerations for Spring

Six Caregiver Considerations for Spring

butterflies and flowers

COVID-19 or not, spring reappears each year. And while loved ones with dementia may not be outside when spring begins March 21, it won’t be long before the vaccinations allow more socialization and we will take to the outdoors to see our friends once again.

With that in mind, some spring tips are worth thinking about.

1. Allergies: With the blooming of flowers and trees, allergies to pollens, dust and, mold begin to take hold and immune systems begin to attack the allergens. Our loved ones begin wheezing, itching, have a runny nose, or perhaps watery or itchy eyes more than normal.  Be sure prescriptions for their allergies are updated and that you can locate them when necessary for the comfort of loved ones.

Bees and flowers

2. Bees and Bugs: Spring flowers need bees and wasps to pollenate so we can enjoy their beauty. But bees can cause harm to a loved one who is allergic to a bee sting. With reduced eyesight and loss of hearing, elderly are at increased risk of being stung when bees are around. Prepare to watch for bees and bugs when loved ones are outside. Keep medications where you can easily find them.

3. Daylight savings time: Many people have adverse reactions to the changing of the clocks. Be alert to any changes in behaviours loved ones might display. It could be related to the recent change in time.


4. Falling: Spring rains bring flowers, but the also bring slippery surfaces. Be aware of the shoes loved ones wear. Slipping on slick, wet surfaces or stumbling in puddles can cause a fall with serious impact on the body. In addition to slippery, wet surfaces, uneven ground, as a field or gravel driveway, may present a perilous situation if someone is not nearby to prevent stumbles and falls. Keep an eye on the loved one while they walk, as well as looking for obstacles in their walking path.

lane and puddle after rain

5. Wandering: The sunshine of spring entices us all to go outside. Loved ones want to get out of their room, and sometimes the lure of the outdoors beckons them to leave their room and perhaps even their apartment, their home, or their senior residence, unnoticed. Wandering is a serious issue for those with memory loss, whether in sunny or stormy weather. The loved one can lose orientation, or completely lose their way. Some loved ones might be blinded by bright sunlight, or be unable to relate to time, and become easily confused.  Spring means keeping a close eye on our loved ones so they don’t get lost to us.

6. And for caregivers who are aging right along with their loved ones, their own needs and considerations should not be ignored. The same allergies might arise, the same precautions need to be taken as with loved ones. Since it is possible no one will ‘keep an eye on the caregiver,’ it is important caregivers get help and are rested so that during the period when they do care for their loved ones they can feel up to it.

pretty girl

In all cases the intention is to enjoy the beauty of the world surrounding us, the sunshine and the rain, the flowers and the insects. . We just need to add a bit more precautionary action when we all expand our world and step outdoors as caregivers and loved ones. Remember to look for the crocus and daffodils and eventually smell the roses!

signoff initials

Six Caregiver Considerations for Spring (c) 2021 Judith Allen Shone