Is There Any Ice Cream? - a Memoir

Caregivers are a very special group of individuals who work hard and get very little recognition, especially from those they care for; we soon learn that such an 'omission' is rarely intentional. This becomes part of our stories.

There must be thousands who are self-appointed caregivers, who never went looking for that responsibility. Caregivers all have in common that their stories are distinctly different, yet on the emotional level, most are very similar.

Today, it is nearly seven years since our journey with dementia began as 'mild cognitive impairment.' Since then, I have walked across many rivers on wobbly, slippery rocks and sometimes I did find someone to hold my hand along the way. It felt good. And I can tell you now, life just feels better with support. You recognize HOPE more easily when you have support.

The Accepting the Gift of Caregiving book series, Is There Any Ice Cream? and Did You Hide the Cookies? tells of our journey from the beginning. I share the life of My Love and me through stories. I felt stories needed to be told so future caregivers would not feel alone, would not be afraid, would not feel they were walking into a totally unfamiliar world.

And so these two books tell my story of Surviving the Challenges of Caregiving for One With Alzheimer’s, Anxiety, and COPD. For some, there will be recognition of similarities. For others, new experiences and emotions might be revealed

Our stories evolved into a personal memoir of those years together when we thought we’d be travelling, but instead were searching the web for COPD information, breathing aids, and dementia diseases, while comparing anxiety attacks on YouTube.

Before I was a caregiver, I had no idea that it would be a consideration in my life. I had worked for my retirement and relaxation. However, that didn’t quite happen in the way I envisioned.

In the beginning, I am not sure I knew many, if any, caregivers. I knew relatives from years earlier who had had nurses come in when their loved ones were ill. Or the loved ones went to the hospital before I even knew they were sick. But I was young and busy; those were years when people did not live so long as they do today, and I am not sure dementia was so widespread. Communities gathered around to help one another when people were sick. Life was different then. Caregiving was different then, too.

But today, I have learned what caregivers do. I know now what caregiving is. I have suffered from the emotional toll it takes. I have experienced caregiving taking all my energy and then asking for more. I have seen relationships strained. I have witnessed caregivers in denial. I have seen caregivers in tears at the end of their rope. And I have seen the HOPE that caregivers give to one another. It was other caregivers who showed me, taught me, that support is essential to any caregiver's survival.

The act of caregiving has an undertone of 'emotionally drained' to me, because that has been my experience. More than tasks or routines or jobs, the hardest part for me was the emotional toll, the exhaustion I felt, the energy I never seemed to have. Caregiving was, and still can be, emotionally and physically brutal when I don't reach out.  

My caregiving responsibilities have circled around My Love who has Alzheimer’s, vascular dementia, COPD as well as osteoarthritis, daily anxiety attacks, and did have colon cancer. I learned in a hurry what caregiving entailed. Our experiences taught me in the ‘on demand’ classroom of life.  When there was time, experience trained me in a slower, 'need to know,' sequence. I could never have taken on education of everything all at one time.

The takeaway, which I must pass along, is that caregivers need help, and must find help, period. I thought I was making the right contacts like other people had. But when I asked, I was told there was no help available for our situation. 

Steadfast, I remained the Little Red Hen and kept telling myself, “Then, I’ll do it myself. And she did.” 

Had I been tuned in earlier to why I would need support, I would have found there were ways to make life less stressful. If I had realized someone could have helped me cross the 'wobbly, slippery wet rocks to get to the other side,' I would have felt earlier what support meant. 

At first, I knew nothing; alone, I kept feeling sidelined. No one realized I was exerting my emotional strength and my assertiveness to cover visible shortcomings. 

"I could be just as good as any caregiver!" I kept telling myself.

Since the beginning, I did not realize I was being sabotaged by my own body, until I learned that I had been experiencing sleep apnea for years, with nearly 70 events an hour, with 60% oxygen saturation. I learned four months later that the hospital had written "Emergency" on my file following my testing. No wonder I had no energy. It never dawned on me that I had anything wrong. But I am way ahead of the story. That hospital test was nearly seven years after the onset of our journey in Alzheimer's World.

Knowing only that I was exhausted much of the time, I let myself drop into depression, a position from which it was hard to reach out. I kept myself in my bubble for survival.

Yes, I had a few friends left, but they had issues of their own. I had no intention of adding my aches and pains to their already full bucket of woe.

Thus, it is with that understanding and believing familiarity, brought through stories, helps span the bridge from fear of caregiving to acceptance, that I felt compelled to share our stories. I hoped perhaps even just one or two other caregivers might read them and see a reflection of something recognized, enough, to understand if they reached out there would be help, they would not remain alone.

Visit www.CaregiverAlzheimerStory.com to read the overview of the book of our journey.

TODAY  I hit an incorrect button and the rest of the blog is in reconstruction mode right now. :-) Oct 31, 2019 Halloween prank? I wish not!

Do something each day that makes your heart sing.   jas