Introduction
A New Caregiver's Blog and Forum
Honestly. Is there any way to "prepare" for being thrown into the position of being a caregiver?
Well, here is my caregiver’s blog and forum. I have a desire to tell my family’s story, and I also hope I can touch someone enough – perhaps you — to develop a conversation, by which we can share stories, learn and discuss ideas.
First of all, I started writing in April of 2020, and we are all going into the second month of self-quarantine. Mom and I live in a state in which our governor has told us all to stay inside, and just announced that this condition will continue for at least another two weeks.
There are already protests because people are bored and restless. There are pictures of groups of people blocking hospital entrances, flocks of swimmers at the beaches in Florida, and bunches of kids in the city parks.
I am conflicted. As of April 18, 2020, the actual death toll from COVID19 is more than 30,000 in the US. It is certain to rise. Now I know that influenza kills thousands of people annually, but if we have an opportunity to stop the spread of this particular strain, by social-distancing, why shouldn’t we embrace the effort?
I am a caregiver for my mom who is ninety-three years old, and I am seriously pondering the possible outcomes of this pandemic, and since I am also “over 65 and in the high-risk” population, each day has special meaning for the both of us. We are both on a ledge, looking down.
Perhaps it is OK to start mingling again, and hope that the worst is over. Perhaps the virus will dissipate with the warm weather. Who is to know?
I personally believe that we need to stay isolated. An entrophic future is writing itself now, but we can bend it to our advantage if we stay diligent. There is a tiny flicker of fear trying to get my attention. I pray for my mom, and for the world.
On a lighter note, because of staying inside for so long, I have a lot of extra time on my hands. Time enough to start this new venture. I do not claim to be a good writer, but I am a good thinker. So the “things I have thunk” are going to appear here. I invite you to the conversation.
A CAREGIVER’S LIFE
I intend to talk a lot about the relationship between mom and me, but also about what it takes to manage this transition in our lives. Like many other caregivers who are taking care of their parents, this is not what I have envisioned for my life.
I am the youngest daughter of three, and still very active with my work, my kids and grandkids, and some volunteer work. My two older sisters are also still very active, and so by default, I guess, I was chosen to be mom’s companion.
I never really thought about it until my father passed away ten years ago My mom was now living by herself, and I was 600 miles away. Well, as I believe, the universe opened up all its possibilities, and I was able to buy a house right next to mine, we moved her up here, and the next phase of our relationship began.
This story may sound familiar to you. About 30 percent of the households in the United States are living with, and caring for a family member who has special needs.
My household is now one of those.
MY NEW JOURNEY
So, she lived alone for two years after my dad passed. In the meantime, I purchased this house, and was moving her belongings one trailer-load at a time. She didn’t want to move, but it was evident that she couldn’t continue to live by herself. So, one November, I was visiting. We were in the usual discussion. There were four of us, trying to convince her that the “move” would be the best thing overall…
I walked into the front room, and she was on the floor, sitting on a pile of scattered newspapers. “What are you doing there?” I asked.
She looked up a little embarrassed, and said “I can’t get up.”
“What happened?” I asked.
“Well, I just slipped, but it is too slick to stand up.”
So, knowing that 30 million older people end up in the hospital with fall injuries, this was pretty much the deciding factor.
Right then and there, I helped her up, put on her coat, and we literally corralled her into the car, and drove those 600 miles without stopping, to her new “Home”. And, surprisingly, she has adjusted very well to the change.
MOM’S NEW JOURNEY
She has been a strong-willed person her whole life, and is quite intimidating – at least to me. She was the caregiver to her mother, and also my dad’s mother.
She owned a gift shop, but sold fine furniture, specialty yarns, herbs and vitamins, and other kinds of stuff. If you have ever walked into an antiques or collectibles store, anywhere in this country, you will have walked into my mom’s shop. Stuff everywhere, and no sense of organization.
But, she lived for that shop, and for her customers. She loved spending time with her favorite customers, talking away the afternoons. I don’t know that she made any money in that shop, but it was really just for the constant supply of customers she could talk to.
We hauled as much of her inventory as we could, but, heaven knows, there was as much stuff left there, as what we packed. And, we left the most valuable asset: her customers.
Though she could still talk to them on the phone, it would never be the same as having those face-to-face chats and happy afternoon visits. That is the most difficult part of this transition. She misses my dad, and she misses her friends.
Nowadays
For seven years, we lived side-by-side, with her in her new home. I would check in on her daily, but for the most part, she had settled down into a routine of chatting on the phone with her friends, reading, and watching, “Ancient Aliens” and “Jeopardy!” on TV. Most nights, we had dinner together.
Now, if you have in your mind a stereotype of an old-fashioned structured family, we are it. Though we are a third-generation American family, we still carry much of the attributes that identify our ancestors’ culture. We do not hug and kiss family members. We do not compliment each other. If there is a comment, it is to make you humble and regret being prideful. We are very modest and private.
I know. Scary, right? Well, since I moved out of my folks’ house when I was eighteen to go to college, I really didn’t have close contact with them after that, except through phone calls on holidays. It’s not that we weren’t “close”. It is just that we were expected to go out and be successful, and live independently of our parents right away — which we did.
OK, fast forward forty years later. Mom and I are now back together as a family unit. We are civil and we care about each other. We talk about other family members, and the daily doings of her friends. But there is still the parent-child relationship, in which I do everything I can to please her.
I obey her instructions. I agree with her argumentative opinions (and she definitely has many of those) . And I work very hard to make her comfortable in a town where she knows no one, and will probably not make new friends, which makes me sad. But, I respect her privacy, and we are both still holding our personal modesty very close.
AN EVENT
This lifestyle continued until three years ago, when she had a massive stroke. She was laying in bed, muttering incoherently, and shaking just a little when I found her. It was evident she had been sleeping, so thank heavens she wasn’t on the floor.
My son -in-law is a first responder, and I often ask his advice on lots of things that come up.
He came over right away, and verified my suspicions.
Though, at this point, there was nothing that could help her, I felt so helpless and guilty for not doing whatever needed to be done to prevent this. We got her checked in to the hospital for an MRI, and to get her “into the system” for Medicare and Hospice. Her diagnosis: “Maybe three to six weeks to live.”
A NEW WAY OF LIFE
How could I cope with this? First, standing in the hospital foyer, filling out papers, then, preparing her bedroom with new equipment, arranging for Medicare support, then contacting family members, figuring out home care — all within a matter of days. A true test of fortitude that many families have to go through. It will be a necessary process for many but it is never an easy one.
But, three years later… Here we are. After being released from the hospital, we were trained and prepared by Hospice for about a month. I feel so blessed to have this service available and it not only helped mom get the proper equipment and care, but the people were very competent and gentle as me they trained me and helped me prepared for her final days.
Well, after a few months, there was one visit from the Hospice nurse where she sat me down with a smile. “There is nothing more we can do. She is not going to die from the stroke, and seems to be improving.”
Oh! Okay… now we have a new mind set and some relief, and some befuddlement.
On to the next phase.
We found a caregiver support organization. The therapist helped me work on regaining speech, regaining physical strength, and managing everyday tasks. It has been a long process, but surprisingly educational and inspirational. The human body is a miraculous glob of matter, isn’t it?
Our Current Mood
I have been fascinated with human physiology since I was a small child. My mother had a set of four medical research books invitingly displayed next to the encyclopedias. (In those days, every family had a three-foot section of bookshelf dedicated to encyclopedias).
But, I reached for the medical books. I can remember studying them often, especially enjoying the pictures of dissections and bloody organs. I believed I could perform an appendectomy on the spot, if needed. I also clearly remember a picture of a man sneezing, and seeing how far his spittle traveled. How appropriate during this time in our lives.
But anyway, all living organisms – animals and plants – exist in an implausible condition on earth. They are, and we are, a miracle. To me, it is the proof of God, and the source of my gratitude. The regenerative process that I have witnessed with my mom’s recovery is profound. So, we are on this journey together, and with her knowledge of healing herbs, and my crash course in anatomy, we travel forward.
Lessons
I sometimes find myself staring out the window with thoughts of the futility of the struggle for life. It leads me ultimately back to God. It leads me back to the realization that I have fear of the future, and what is inevitable will have to be faced soon. This fear might overwhelm me, but through meditation and Tai Chi practice, I am able to put it away from me.
Seicho No Ie was my Grandmother’s religion, and she read it’s teachings daily. Here is what the founder, Rev. Masaharu Taniguchi has written:
“Fear is the very emotion that is the cause for all misfortune. Since this world is a world created by God who is goodness, great sympathy and love, intellect and wonderful wisdom, and 0mniscient and omnipotent, there is no way that misfortune, which seems to go against love, could exist here. Nevertheless, we imagine that misfortune is real. We ought to know that God is absolute love and filled with nothing but love.” (Open the Doors of Your Life 2, p.94)
I will take this to heart and release my worries of what is to come in the future.