We Are All Caregivers

I am sure Joule and I connected because we both have come to understand that our role as caregiver is a treasure, a gift of experience, that each one of us on this planet gives to another out of love. She taught me that we are here to walk beside others, encouraging them to do what they can, as long as they can. Grateful for this angel.

I am happy to introduce you to Joule, our exceptional PSW and our first guest author.

~ ~ ~

We Are All Caregivers

“Where do I begin. My job is like a blank canvas, you just never know what you’re going to get. Of course, every patient is different, with different issues, therefore you must be ready for the challenges.

I see the good in everything, sometimes the situation is grim, but, of course, I see the positives.

I go in with a big smile; I introduce myself. Then I enter their world. I follow the protocol. I get to insert myself, my spin on things. I always attempt to reach my patient where they are.

Whether they are verbal or non-verbal, or have a language barrier; male or female, young or old, they all have something in common: they have a need. I address that need in whatever capacity.

In addition, I always express myself by lifting the atmosphere, whether it is with laughter, conversation, or it could just be something in the room. Everyone has likes and interests and sometimes it’s the painting on the wall, elephants in the room, cars, vases, décor or just a photo that opens the door to our conversation.

My goal in administering care is always to leave something positive with my client. Often times we speak about what is going on that day. Sports, weather or current events. Everyone needs to feel some level of comfort. It could be in motioning as they sit, stand, or just take a step. It all translates into letting them know that you care for them.

The joy in knowing the exchange between patient and caregiver ends on a positive note, gives me satisfaction and encourages me to continue to serve.

Being a part of the chain of care leaves me with an assurance that when the need arises, any patient can depend on me, or any caregiver, because we all serve in the same capacity.

We are all caregivers. We are going to need care. We have been a caregiver or will be a caregiver at some point.”  

Joule (c) 2019.

~ ~ ~

I have mentioned before that it was nearly five years following My Love’s diagnosis when we finally were allocated professional support from the Provincial Health program. My Love had been through varied illnesses, doctor visits, testing and hospital stays, so many anxiety attacks in addition to increasing aggression toward me, generated from his progressing dementia. I was slipping off the end of my rope.

In my early retired life, I never dreamed I would have to take 100% care of another human being again, not for a short time, not for twenty-four hours, and certainly not for years. But so much had been revealed to me as caregiver, beyond illness and pain, that my perspective went from fear to acceptance.

We were surviving, but at times I wondered how. Somehow, humans seem to rise to the occasion, whatever the need. We “carry on and survive.”

In the process of caring for My Love, I met so many wonderful people in the care industry. They were the folks who really did care about other human beings. It took a long time, the better part of my entire life, to figure that out. … but I ‘got there!’

I began to understand how much of themselves these caregivers were giving when My Love was showing serious aggression. I felt threatened and was at my most vulnerable. I was not sure which one of us needed help and care more. 

I noticed it was the medical and health care professionals, psychotherapists, the personal care workers, the service workers, the non-profit caretakers, and those who support them and in many cases, those who serve those who support everyone else, who were the ones making a difference in our lives. I had never met so many care-focused individuals. 

I always say the Universe has guided my life. This turning point in our life was no different.

My Love and I both needed help and care, tangible, serious support. It was not long before my cry for help, my final reach ‘across the stony, slippery rocks,” was answered. 

To my surprise, our personal service worker, our PSW angel, was assigned to support, to serve, not just My Love, but both of us. She accepted the mission to bring love and care back into our life. I watched as she observed My Love's memory loss levels, an area I had been neglecting because of exhaustion and perhaps a bit of apathy after so many years. I could feel she was refueling my being so I could carry on my role. At first, her efforts lasted for the days between her visits. And then her love and energy lasted week to week. I felt the positive energy she always left us with continue as a tonic for my caregiving ahead. She had become my caregiver, as well as a role model for me.

How fortunate we were to have weekly support from such a capable, knowledgeable, caring, beautiful soul and I had been given the chance to watch her in action. 

I asked her what her magic was, and thus, we spent hours talking about her role and the gift of caregiving. I felt her genuine caring nature lifted me up from wherever it was I had fallen. She definitely was a jewel.

So naturally, when I had an opportunity, I asked her to share her magic. Support can be different for different people depending on their need, physical abilities, daily living activities, personal grooming and care required. In our case, she was filling an emotional need, filling our souls with love and energy to carry on, as well as being on alert for unknowns related to My Love's diseases and mine. We have been blessed.

Do something each day that makes your heart sing. jas

Original photograph in post by Mabel Amber, still incognito...from Pixabay

Gramma's Friends

In 1997, long before dementia was a familiar word in our life, more than ten years before we would retire, my first grandchild was born.  I lived in Canada and his family lived in the U.S., a four day drive for me, a prefer-not-to-fly person.

We did visit. We did drive and we did take the plane. I was in love with him and when I left after each visit, I couldn't stop that wonderful feeling a brand new baby generates in me. So, to release my feelings, I wrote, as I do in emotional times.  

I wrote volumes of poems, stories-in-rhyme, about what I dreamed our life might be like if I were near him, if I were part of his life more than I would be able to be, living in another country. I experienced the connection and those emotions through writing about what 'might have been.'

Having just turned fifty-five, the concept of joining the senior population was not yet dominating my thoughts.  Yet, because of friends who had families nearby, I was drawn to the contrast between seniors and young children. I had seen pictures in the paper and had read about senior homes where they held pre-school classes so the two generations could ‘play’ together. 

I learned there was value in children becoming familiar with their elder population so there could be a strong connection as they both aged. I have since learned that getting grandchildren involved in caregiving also has the potential to keep families connected, to keep seniors vibrant through their link to the younger ones. 

One of my stories-in-rhyme was about my grandson going with his grandmother to see friends in a senior home. I suppose the need to write about the topic was because I, too, was soon to be an aging 'older person.'

In this story, a child is becoming familiar with the older generation, and thus I share the poem here focused on a caregiving twist. 

My wish would be for all caregivers to bring their younger family members into the fold so they, too, can develop their gift of caregiving.  

Just have fun with it!

Gramma was staying at our house that week,
And we’d had a good time, ‘though the weather was bleak!
There was snow on the ground with no place to play.
Then Gramma decided we’d go out one day!

Some friends lived in town not too far away,
They were having a party for someone’s birthday!
Gramma wrapped up a present and put on a bow,
with a big card on the top – we were ready to go!

We got in the car – she drove a bit slow –
But she said it was only because of the snow!
We went down the hill and ‘round the big bend
and stopped on the street, near the house at the end!

We walked up a ramp, then I looked for a bell.
But none was there. I guess Gramma knew well
those wanting to enter had to phone through!
So she picked up the phone and pushed number “two!”

Then she pressed a small button and the door slid aside,
and we both went walking right inside!
At the desk by the door was a lady who asked
why we were there, and then let us pass!

It wasn’t quite like any house I had seen,
It wasn’t quite like any place I had been!
So many people lived in one home,
I guess they didn’t like living alone!

Off in the corner I saw a TV
by a chair with big wheels. . .what could that be?
Then down the hall came a lady in blue
being pushed in a chair that had big wheels, too!

I asked my Gramma if I could ride
in a chair with big wheels right there inside.
She told me, ”No!” chairs were there to assist
when no other way of walking exists!

Then I saw in the hall a man in a chair
talking to someone. . .but no one was there!
When I asked my Gramma if she had seen that,
she just smiled and whispered, “Some folks are like that!”

We passed a lady with a long, colourful stick.
She tapped the floor as she walked by with it.
When I asked Gramma what her stick was for,
She said, “Canes hold people steady when they walk on the floor!”

One lady was snoring, asleep in a chair.
She had something strange near her ear, in her hair.
And another man had that same thing in his ear.
Gramma said “hearing aids” help people to hear!

So many Grammas had glasses on, too,
Just like my Gramma and Grampa both do!
She told me “Sometimes we need help just to see
And glasses help many folks; yes, even me!”

I saw down the hall a man shuffling around;
He would move one foot, then he’d put his cane down.
He leaned down toward me and gave a big smile,
And asked if I wanted to talk for awhile!

I would have, but Gramma walked straight down that hall,
still looking for names she knew on the wall.
We stopped at the door with the yellow balloons.
The party was there that afternoon!

A friend of my Gramma’s came over to say
she was happy we came to her party that day!
She walked holding on to a wheeled metal frame.
It held her up, too, but it wasn’t a cane!

I saw in the room Gramma’s friends were all there,
some knitting, some chatting at this festive affair!
I was surprised to see the one by the door
in her chair with big wheels that I’d seen just before!

A tired little lady “had dropped off for a doze!”
with her pair of glasses still propped on her nose.
One friendly lady in the corner told me
she’d tell me a story if I sat on her knee!

Some asked me questions while others just smiled.
(They were so happy spending time with a child!)
Gramma’s friends were so nice - they gave me a treat,
a big slice of cake when they started to eat!

It didn’t matter that they couldn’t see well;

that their hearing was poor, and I needed to yell,

that they had a hard time trying to walk.
I just walked beside them when they wanted to talk!

My Gramma’s friends were so nice to me,
I liked spending time in their company!
That afternoon I made so many new friends,
when we stopped on the street, near the house at the end!

~ ~

Copyright (C) November 3, 1998, Gramma’s Friends, from Under A Mushroom, Fun and Friendly Stories-in-Rhyme with Griffin and Gramma Jude, written by Jude Shone and illustrated by the Woodland Fairies

Do something each day to make your heart sing!

Illustrations at introduction to this post by Avanne Troar

Caregiver Crossroads

Someone you love is growing older. Acting strange. Losing their way. Forgetting things.

You accept that seniors begin to forget as they age. But dementia was never on your radar. You have Barbados, Cancun and Canary Islands catalogs on your coffee table. Your biggest decision ahead is to pick where this year’s winter hiatus will be. You need to hire a snow plow company so the snow will be removed from your drive while you're away. You arrange for your neighbor to spot check the heat inside your home periodically so no pipes freeze. You spend time dreaming of what to pack, to add to the cute little blue and white bathing suit and cover-up you just found on sale, the one you plan to wear while spending time in the sun by the ocean. Next you must look up book titles you might like to read on the beach.

Your loved one walks in the door from a little afternoon out with friends. He had agreed, when you called him earlier, that he would pick up a dozen eggs on his way home.  When he arrives, he has a loaf of bread. Well, he remembered he needed to bring something home, he just didn’t remember what and did not even know he had forgotten . . . he never thought to call to ask.

Normally, he would respond to you with an apology when you tell him you asked for eggs. This time he gets aggressive and denies you asked for eggs. He is beginning to change in personality, but you think it is because you are home too much together in retirement.

Then one day, he comes home late. He can’t explain exactly why. He begins to concoct some story about the car breaking down, and then switches to telling you he ran out of gas. Your senses tell you something is not quite right about the discussion. At the end you discover he took a wrong turn and didn’t know where he was. The delay in arriving home reflects his driving around to find where he was. He didn’t even remember he had a GPS that could help him find his way home.

You want to suggest he might see his doctor to check if he is ok. But he doesn’t care to be told when to see his doctor, after all he doesn’t tell you when to see yours.  Eventually, you decide to call his doctor and explain that you’d like it if he could help get your loved one in for a visit without his knowing you were involved.

Several months later you get a call from the doctor asking if you had noticed any memory issues? Did you think your loved one was being more forgetful than normal? It doesn’t take you long to put it all together and agree, yes, you had noticed.  So, when the doctor says your loved one is to have a set of memory tests, you are rather pleased because something might be discovered.

And then the day comes. You and your loved one are sitting across from his doctor. You hear the words mild cognitive impairment. Unfamiliar with the term, you ask for clarification. And then it hits you, your loved one is in the beginning stages of Alzheimer's disease, memory loss. A fatal disease that never goes away and will change your life forever. And neither of you knows much about it.

In that instant, during that meeting, even though no one asked if you were up for the job, you become a caregiver. Circumstance put you on the path with your loved one. You are going to be taking care of him for the rest of time. You, alone. If you have family, they might learn to help once in awhile.

Now what do you do?

Do not let the inexperience of caregiving silence you.

You have arrived at the crossroads, the juncture in life where caregivers generally realize their life is going to change along the path ahead, as they head toward an unfamiliar world. Many go through the same thought process asking themselves:

“Why did this happen to me?”

“I didn’t ask for this job!”

“What do I do?”

“How will I do it?”

“Who will help me?”

“Where will I find help?”

Quickly, caregivers have to learn about support. I didn’t even know what that really meant. We had to learn. I became truly exhausted before we realized we needed support. I had no idea what was available because I had been turned away earlier. Too trusting, frightened and naive, I never went back to pursue. My error.

Keep asking questions. Talk to everyone you know. Do not let the inexperience of caregiving silence you. Interrogate! You be the interviewer. Be courageous. If you make your needs known, there are people who will be reaching out to you, holding your hand as you make your crossroads decisions, as you cross the wobbly, slippery rocks to join that incredible group called caregivers.

Amazing caregivers need support to keep going. Believe me, you will be awesome. You will find inner strength, what Deepak Chopra calls your buried treasure. Then, reach out for the support you will need to keep going. Take the first steps.
 

Do something each day that makes your heart sing.   jas

Original photograph in post by James Wheeler, Souvenir Pixels

In Support of Caregivers

Our journey began nearly seven years ago. 

There is no normal for how long one is a caregiver. But actually saying that number makes me realize how much we have been through.

The word caregiver was foreign to me; the idea of dementia in our family never crossed my mind. We were newly retired, ready to tour the world; well, at least we had purchased our comfy touring vehicle to see Canada, coast-to-coast.

But within weeks, our life changed dramatically when My Love was diagnosed with mild cognitive impairment. I had no idea what being a caregiver meant. Over the years, I learned my role, played my part as best I could. But there was much to learn and, as always, so many beautiful people helped us, supported us, along the way.

Lauren Gravitz, science writer, explained one perspective on the evolving role of caregiver in her article, To Manage Dementia Well, Start With The Caregivers, of September 15, 2018, on the National Public Radio, Inc. website, https://www.npr.org/ : 

“As more people survive into their 80s and 90s, there are more people living with Alzheimer's and other dementias than ever before. And the burden is one that primary-care physicians can't handle alone.”

So, while scientists are working toward new discoveries, while current physicians are keeping up with knowledge, and even while new physicians move through the medical systems, the number of those with dementia diseases keeps increasing.

The number of family members being called into a caregiving role is swelling at the same rate; all the loved ones, anywhere along the dementia disease spectrum, still need care. Appeals for caregiver support is growing parallel, and at the same exponential rate, as we see with dementia and caregivers.

Ms. Gravitz continued her report on the interview with Helen Kales, M.D., Program for Positive Aging, University of Michigan. "We realized we needed to do something different," Kales says. "We just can't train enough physicians to provide dementia care. Instead, we need to take the daily treatment and management of these patients out of the hands of physicians and put it into the hands of the caregivers themselves."

Boom! 

Now those of us who are unprepared, untrained, and still aging, will become the lead caregivers.  The fallout from that eventuality will depend on funds and programming in geographical areas. 

Definitely, this newer thinking elevates and amplifies the urgency for caregiver support one-hundred fold! But in these days of budget cuts, it is likely that added relief will be coming from support we can co-create.

Caregiver support groups were never more important.

In the seven years since My Love’s diagnosis, many more  vulnerable and inexperienced caregivers have joined the front line of the dementia battle. Many more are alone and afraid.  Countless don’t recognize their situation; some even deny it. Others don’t know where to turn. The need for meeting with a support group and to develop lifeline connections is more essential now than ever.

Caregivers, aging right alongside their loved ones, can not continue to be responsible for care without education, without training, without support from different sources. While every offered moment of respite is a welcome relief, more substantial support services are needed to encourage and assist caregivers, or they will be unable to manage in the same way physicians cannot keep up with the needed services.

One added hiccup in the picture is that most dementia patients have other diseases or issues - knees, eyes, heart, feet - the parts of our body seem to weaken as we age. Each person has a different picture of what problems they are carrying through life with them. And many caregivers have to deal with their own problems. Caring for two-as-one is a huge, and unintended, burden to lift, especially for aging seniors.

The thing is, as I have traveled this journey, I realized no one has all the answers: no doctor, no society, no medical organization, no scientist. No one yet has dementia sorted out. There are still so many unknowns about the diseases.

Plus, one support solution does not meet the needs of every caregiver. Each situation, big or small, requires its own evaluation and research. ‘What is needed and why’ sometimes become obvious. But other times, creative actions are required to handle behaviors and situations.

Thus, a group of people, who are in similar situations, living in close proximity, with loved ones at comparable points along the dementia spectrum, rises up from necessity. Priceless.

The benefit of just such a small group of caring people is that it provides a social setting, brings people together to help one another on their journeys, and encourages discussions to find solutions to questions being asked every day.

My years of caregiving have turned me into a caregiver advocate of sorts. I see the pitfalls we might stumble through, I know it is a rough road. I don't wish the role and associated hardship on anyone; but when we are in this together, with no choice but to move forward, it is good if we can lean on each other a wee bit.

Thus, as a caregiver and the writer of our caregiving journey, and as a member of a self-created Lifeline Group that meets weekly to this day, I wanted to be sure caregivers could benefit from such a group.

And so, I offer a small starting point to new caregivers.

I propose the Accepting the Gift of Caregiving Support Group. I hope this provides an opportunity for caregivers to find answers. Caregivers just have to take the first steps to reach out for help. 

On the website page www.CaregiverAlzheimerStory.com, click on ‘Discover Support’ tab. Learn more about the AGC Support Group related to Is There Any Ice Cream?, Part One of the Accepting the Gift of Caregiving book series. The Questions for Discovery will be available to those who purchase the book.

On the website there is a sample pdf page to download to show the type questions that would be included.

A self-created support group consisting of local members, or an existing group, will have people who understand the region and know of available resources. Answers to questions, those in the package, or more immediate ones from the members, will come from discussion between members. The resulting answers will be appropriate for the members because they will relate to personal situations.

I know these questions are just a mere beginning of the questions that will come up. But I also know the value of a support group and that Questions for Discovery can be a place to begin. A caregiver in a group has someone to reach out to, someone who can respond to questions. Each caregiver needs a lifeline to help with self-care, a force against depression. I lived that and know. Reach out. Take the first steps.

Do something each day that makes your heart sing.   jas

Original photograph of this post by Lisa Fotios or her site

Ice Cream Connection

I had just met this ‘young’ man. He was new to the reception desk at the senior centre. 

My friend, standing beside me, had explained, by way of introduction, that I was a caregiver. 

“Her spouse has Alzheimer’s disease like your mother had,” she mentioned to my new male acquaintance, whom my friend already knew.

It seemed to me that the gentleman did not want to talk to me too much. His face did not light up. His eyes remained dull. So, I did not talk about the role I still fulfill daily. I did not want to start off a new relationship on the wrong foot. 

Ignoring the caregiving comment, I smiled, shook his hand and asked, “How do you like being in your new job?

He began to tell me, in his slow, senior voice, that he liked meeting new people each day. “It’s a good place to be.”  Good small talk!

But then he stopped short and turned the conversation right back to caregiving.

“I took care of my mom for a number of years, you know?“ he told me, as if I already knew. Of course, I didn’t. “Evidently she had dementia for a long time before any of us ever knew,” he went on. “We noticed her memory going, but she was in her late seventies and we all knew seniors began to forget things. She’d forget where the car keys were, and at times we had to help her find them, and even had to make another set.  We spent hours looking for her glasses one time. We actually found them on the floor of her car. But it seemed normal for an elderly woman to lose her glasses, although maybe not in her car.” 

My new friend took a breath.

“And then we learned not every senior forgot things, that it was not necessarily normal for a senior to forget. So then my mom’s forgetting no longer seemed normal,” he told me as his eyes came alive. The memory of his mother made him happy. 

“It was when my mom told us she wanted some ice cream, and we went to get her some, that we recognized maybe there was something to dementia among seniors after all.” He was becoming animated; storytelling was bringing him to life.

“We knew something wasn’t quite right when we went to the freezer to get her some ice cream and saw that the ice cream my sister had just gotten for a weekend family get-together was gone, all four tubs. And then we saw the empty tubs. You know, those fancy little Ben and Jerry containers. They were still in the kitchen trash basket. My mom had eaten them all, and we had believed she didn’t like ice cream!” He stopped and began to laugh, but then went on. “She denied it, of course, but we knew she had been the one to eat the ice cream because she had been the only one home at the time. She ate all the ice cream and didn’t remember!” By then my new friend was grinning ear to ear.

Oh, my gosh, that culprit, ice cream, surfaced again.

“That’s a unique way to discover she was having serious memory loss,” I smiled and went on. “I guess she loved her ice cream, like many with dementia seem to.” I had connected with him. He had made me chuckle as he told his story. 

“But I am so sorry to hear your mother suffered from dementia. It is such a difficult disease for anyone to go through, and doubly so for caregivers.”

I didn’t know how much more to say. I wasn’t sure if he wanted to discuss it, or just tell me his story. I didn’t know what his role with his mother had been. I wondered if I should just politely move on. But he kept going.

“I was so lucky I had my sister and family to help us take care of her. Of course, she did not think there was a thing wrong with her,” he continued his story. I was beginning to feel like he needed to tell someone. Needed to tell his story, to let out the pain. I was listening. I wanted to know about his mother.

He was talking about a seventy-something woman who had family all around her, who daily was forgetting different things, and those around her did not associate her memory loss with dementia. It only went to show me how many of us did not experience anything like it before we were faced with those words, mild cognitive impairment.

So many of us were forced to become caregivers out of circumstance. And then I recognized many of those who knew little or nothing about memory loss knew even less about being a caregiver. I was too familiar with being unaware of what was ahead. I had been in those beginner-shoes not that many years before. In fact, I still faced unknowns every day.

I knew then, and after writing about caregiving for My Love who had dementia along with several other diseases just as fatal, that I needed to bring caregiving into the light. I knew it was more pressing now than before, that I had to share our stories so that a few more people might become familiar with the language, the concepts, the disease spectrum, the pathology – the whole gamut – of dementia. While I could share emotional experiences, I wouldn’t be able to tell them everything that might happen. But, I could at least encourage them to reach out, to find support, the part I had found most difficult.

I had been one of those who had become a caregiver without training, without family experience, and for a few years in the beginning, without support. I knew the steep learning curve ahead of those just beginning their journey. It was because I had not been aware, because I had been so afraid, and felt so alone for a long time, that I felt compelled to find a way to share my stories. I knew if I could get to caregivers and bring light into their world, if I could be a hand reaching out while they were crossing those wobbly, slippery rocks, I might make a difference in at least one person’s life. I had to try.

It wasn’t long before I began to wonder how many others had experienced the association of ice cream with memory loss! Even today, I become amused when I hear the various stories connecting ice cream and dementia. The title for my first book seemed so natural to me!

Over time, I realized stories, for me, had been a way that the ‘pain got out.’ And I, in time, noticed I had opened a door for the ‘love to flow in.’ I had thought on that for years after first hearing Peter, Paul and Mary sing “Give Yourself to Love” and after years of writing stories. 

And thus,  “Is There Any Ice Cream?” reflects love that begs to fill in the emptiness when the pain leaves.

Do something each day that makes your heart sing.   jas

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

Let's Get Acquainted

Get a cup of coffee or pour your tea.  Let's get acquainted; together, let's diminish the unknowns between fears of being a caregiver and eventual acceptance.

Will you be ready or will you be overwhelmed?  Will you be prepared or will you struggle in your role? Before you have no choice, before it is your turn, be encouraged to understand the world of caregiving, to get a glimpse of the world of Alzheimer's.

As I have moved along the path we have travelled on our journey, I have become increasingly passionate about encouraging new caregivers to find lifelines and support. I was slow to find  support and as a result, I truly felt alone. 

My wish is that these words will act, in a small way, as friendship, especially for those just beginning their journey. With this blog, I offer a connection for asking questions. Email me in the side form with questions. I don't have all the answers, but together, there's a chance we can begin to discover sources of help.

My vision is that new caregivers might be able to tackle their fears of the unknowns just by knowing there are other caregivers who want to encourage and assist. And eventually, they will accept that "caregiving is a gift we give to one another while on this planet." (1)

In the wake of finding an outreached hand, it will be easier to be emboldened to find support, backing, assistance, relief, comfort, respite, and friendship to help ease the endless stress. And sleep. Caregivers must have sleep. 

Foremost, my wish is for caregivers to discover they don't need to be alone.

Not every caregiver needs a nudge, or a helping hand, but for those who do, perhaps something here will inspire them, reduce their fears, give them confidence, and spur them onward. 

In the beginning I felt very much forgotten, sometimes terrified, and often anxious, about our future. Although I am no longer depressed, some days I do feel disheartened and still often exhausted. 

But today, I recognize it is necessary to keep asking for help.

And at the same time, I feel it is time for me to reach out, to encourage others, especially those caregivers who are just starting their journey. I hope they will become strong, able to discover support they'll need for their bumpy road ahead. 

Caregivers: Take the step. Ask questions of everyone you meet. Find help as you begin your journey so it will uniquely fit your needs. Your life will be so much happier and healthier when you feel you have support. 

If you are interested in caregiving or caregivers, I'd be honored if you would come back to visit with my guests and me as we encourage caregivers through this blog. 

Enter your email address in the email submission link on the right side of this page and click SEND. You will then get an email notice through the MailChimp email service when new posts are published.

Thank you, Judith Allen Shone 

PS: The Accepting the Gift of Caregiving blog title comes from the series name for my two books Is There Any Ice Cream? and Did You Hide the Cookies? Both books reveal my caregiving journey with My Love. 

With the subtitle, Surviving the Challenges of Caregiving for a Loved One with Alzheimer's, Anxiety and COPD, the books reflect the experiences of My Love and me over seven years and will be published soon in 2019. 

As part of the series of books, there is the Accepting the Gift of Caregiving Support Group program for caregivers, associated with the above books. More is discussed on the book website/Discover Support. Sample Support Group Questions for Discovery as offered to readers of the book. You might just be the support that many silent caregivers have been looking for.

To learn more, see author website. I hope you will read about them and then read them...in a book club or with your friends or share among caregivers.  Journaling was what started my transformation to acceptance. Thank you.

(1) Quote from "Did You Hide the Cookies" by Judith Allen Shone.

Do something each day that makes your heart sing. ~jas