Fatigued, in need of respite

Fatigued, in need of respite

Is it the heat? or maybe the humidity?

I sure notice how tired I am this month. Is it because summer is actually here and sunshine is pouring in our windows, baking us as it does each year? Our AC is working hard, the dehumidifier has to be emptied often and the three fans in the room are at full speed. But even with my protector screen in front of the southern window, the heat tends to make me sick.

I won’t open the door to let in the breeze because nothing filters out the humidity! My Love’s COPD cannot handle the humidity. My body cannot handle the humidity…on this one thing we do agree!

So what do I do? In the afternoon, if I see the tree tops swaying and realize there might be a small breeze blowing, when the sun is on the other side of the building, I open the door a crack, daring the humidity to come in, “…what point to run a dehumidifier with the door open?” I ask.

My Love reaches for his puffer. I know effects won’t last and he’ll feel a need for another puff soon. I step out onto the balcony and shut the door behind me. It is nice to feel the wind brush my arms, and notice my ”’much too long’ hair blowing around….to realize it is summer…the second one since the pandemic began. We have been inside for so long!

I have just spoken with the head of the day program where My Love attended 16 months ago. They anticipate possibly being able to open, on a limited-participant-each-day basis. Oh, how nice to hear that. It had been such a nice few hours for me each week. She asked what I thought about starting again…after our second vaccines this month.

How different it is now than those months ago. How changed I am, and My Love is. How much older I feel having been isolated so long. I consider how much My Love’s memory has lapsed since we left the program for lockdowns. I consider how much functionality his body has lost, how much more I must do for him, think for him, say for him—he is never alone. All the time now I am two people, multi-tasking, double-track thinking, perhaps? Will he fit in with the day program folks now? I wonder.

He doesn’t register anything about the virus, he hates the mask on his face and has no idea why he must wear one. The one criteria of concern is the need for social distancing. It will have no meaning. I seriously doubt he could consciously understand the need to stay at 2m from someone else. He has no clue about the virus, even when I mention the ‘big sickness.’ He does not remember my words, let alone know what they mean. Masks and distancing are off the charts of understanding.

But, I definitely need respite. I am aging faster than I would have believed possible. I feel old. Much older than the sixteen months that have passed since we have been isolated, like captives, in our small apartment. I need the stimulation of other people. I know I need some grooming, some TLC time for me.

Without a doubt, I need to be refreshed, recharged, repaired, the same as someone focused on driving all day needs a rest, I need to relax with both eyes and both ears, and full mind attuned to something other than my responsibilities toward My Love’s every need. I have ‘grabbed the bull by the horns and moved forward,’ long enough without help.

Our second vaccines were last week. We had relatively little reactions, and this week it seems we are OK. I am calling the services we had before the pandemic halted our lives to see if we can get some help for My Love and respite time for me.

Hopefully, the powers that be will acknowledge my request for someone to help with showers and shaving. Someone to talk to him while I go to the basement to do loads of laundry. Hopefully, someone will come and relieve me of continual conversation…ultimately with myself…yet provides a closeness that stimulates his mind. My wish is that someone else can keep him from wandering off to find secret spots: to hide his puffers, to deposit his pills he’s put in his pockets, to hide his accumulated, folded squares of Kleenex, to remove and hide his Depends without telling me. It is amazing how quickly he can scoot down the short hall, after asking permission to go to the bathroom, and carry on all his clandestine activities in the back rooms….all while I am in the kitchen cooking or washing up. Unfortunately, from there I cannot see or watch him. If I did not know better, I would say he planned his mischief so I would come out and play with him! But alas, he is just ‘doing things without thought’ like many one-year-olds…he has not words to tell me, he just does…that’s his level now in stage seven.

Light at the end of the tunnel is having someone to relieve me while I take a nap; even if they can look through picture books together while I catch up on another of many forgotten chores. I am not young anymore. My next birthday will be my 80th. I understand that having respite might not come from the day program if he can’t meet their criteria. Even though I don’t have the energy to do the many other things I used to do, planned respite hours from somewhere just might allow me again to be a rested caregiver, to carry on from one respite period to the next.

signoff initials

I know exhaustion happens to us all. Take note. Take action. That’s the plan.

Do you have your plan? Visit our blogsite page Respite Ideas. Time to make your plan.


Fatigued, in need of respite. (c) 2021 Judith Allen Shone

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.



There….I had an opening to lead her to my new websiteMyasthenia Gravis Insights — created expressly for the purpose of shining light on myasthenia gravis, beginning in 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.

My red flag

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 now, regardless of the month,
to take care of your unfinished issues!!

thank you


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