April 16, 2020 © by Judith Allen Shone
Contributor, Robby Henes, Guest Author
It is a pleasure to introduce, and welcome, caregiver, Robby Henes, our newest Guest Author.
Robby lives in a rural area of Southwest Colorado, caring for her mother while she manages the family business of growing and selling native grasses and wildflowers.
Caregivers have countless experiences that amaze and surprise them. Hearing their stories, or reading about them, helps us expand our understanding of the world where our loved ones live. At the same time when caregivers go through unfamiliar situations, we find writing about them releases some of the emotions accumulated and allows the reader, as well as the writer, to get a sense of what has happened. Putting situations into words can bring clarity.
A good sense of humor and the ability to laugh is sometimes the gift that you are given as a caretaker. Her mother’s new words and language have been a source of smiles and laughter for everyone but also highlight the difficulties that a person with memory diseases struggle with as they try to communicate. Through her reflections, Robby is sharing with us a few memorable moments of clarity that revealed themselves while she was caring for her mother.
We are so glad you are joining our Chain of Care, Robby. Thank you.”
~ ~ ~
Winter of 2019. When Am I?
by Robby Henes
It is hard to conceive what it must be like to lose all the tethers that hold you to the life you have lived. To lose the people you have loved, the acts, the skills and the experiences that define you and even the physical act of just existing and growing up and aging. To lose all these pieces that define you to yourself and to the world around you. All these pieces still exist but when you have dementia, you don’t get to keep these tethers, these intrinsic, vital pieces of yourself.
Mom is struggling with dementia. She has slowly lost most mental capacities over the last 7 years, so that now her short-term memory spans milliseconds. Her
language skills have created whole new words and concepts, and if there were an Alzheimer’s dictionary, Mom would be a prime contributor! She is frequently
‘exuberated’ (it is a good thing), she can be ‘enaced’ or ‘inguberated’. She can be so happy to see us “it’s like putting nickels in my ears!” And occasionally she wants to “ ‘do it’ with us, even if we don’t do it.”
One day she announced “my world is an oyster, its kind of slimy!” That actually makes a great deal of sense. She has ‘delightful nothings’ – but more often she has bouts of severe depression and terrible confusion.
It’s impossible to know what she is experiencing when she wanders the halls and
can’t get a grasp on anything – who she is, where she is, what she is doing. It is
heartbreaking because we can’t put any pieces back together for her. We can
only love her, be a physical presence and try and hold whatever pieces might exist
close to her.
We have had a couple of exchanges that have helped me relate just a bit better to
how far she has to reach to have an iota of information about herself. One day
she said she needed to ask me a question. “Am I a lady or a dad?” (Translation –
Am I a woman or a man? I think.) The depth of that question did not hit me until another day when I had her look in a mirror. She gasped and said (in amazement?) “I’m a lady!” (Translation – I’m a grown lady not a little girl!??) leading me to realize that once again she needed to answer the question; When am I?
Copyright © 2020 Robby Henes
~ ~ ~
Robby’s story has made me realize that caregivers are fortunate when we still can communicate with our loved ones, especially in ‘their’ language. She has directed my attention to My Love’s speaking abilities, revealing to me that I was, perhaps, taking his ability to speak for granted.
We learn that those with memory issues develop their own unique characteristics, including communication issues, as they struggle to speak the words they have ‘on the tip of their tongue’ or ‘know it is on the other side of the curtain.’ I have felt blessed to have been ‘included’ in My Love’s world, and that he has let me in by enabling me to ‘try to’ learn his language.
Therapists dealing with heart and stroke issues, as well as those physicians dealing with Alzheimer’s every day, have much to share related to various communication issues. If you feel your loved one has a communication problem, speaking, comprehending, verbal or non-verbal, or other, bring it to the attention of your health provider. Following an evaluation from your physician, together you can determine what your next steps might be.
Copyright © 2020 Judith Allen Shone
- Remember to invite your friends, or those who might benefit, to read our stories written to help reduce stigma as we shed insight on the world of the caregiver.*
Each day do something to make others smile and your heart sing!
SPONSOR- – – – – – –
“Is There Any Ice Cream?” by Judith Allen Shone
Surviving the Challenges of Caregiving for a Loved One with Alzheimer’s, Anxiety and COPD. Accepting the Gift of Caregiving, Part One.