Waking and Dealing with Alzheimer a Families Real Life Accounts

by teddletonmr

The heart break of Alzheimer’s disease, and its impact on the family brings families together or rips them apart

Concerned people like you and me have certainly heard about, and are aware of the reports having to do with Alzheimer’s disease, and the heartbreak associated with the debilitating loss of memory and changing demeanor. Intellectually I believe we all understand there are many challenges families like yours and mine must cope with.
Regrettably, many well-intended folks simply find themselves in denial. After all, it is easier to choose to believe in the beginning stages of the disease. Much like a couple of my siblings, believed Mother’s memory loss, was simply a part of the aging process. One that affects us all eventually, this combined with the loneliness and period of mourning which affects widows like mom after the loss of their husband, and father of their children, was to blame.

Emotionally we just choose not to jump to any conclusions that would support the diagnosis of the mentally debilitating disease that is Alzheimer's disease.

What is going on with mom?

Mother just is not herself these days.

The first real clue that something was wrong with mother became perfectly clear to my wife, kids and me. During a family vacation trip, we all went to visit my youngest brother and his family a few summers ago. You see, it had been ten years since dad passed away.

Mother’s choice to remain in her home where we all grew up, came as no surprise to anyone that knew, respected, and loved our dear mother. The thing that did cause those of us that kept up want the goings on with each other’s families, and mom, sharing a concern for mother’s health, and well-being. Mother became increasingly reluctant, or in many instances flat out, refused to leave the house for any reason other than to pay her utility, phone and cable bills.

In the past, mother always felt the need to fill the role of caregiver. Looking after and caring for someone was her mission in life. Running friends and family to and from doctor’s appointments, visiting her sisters or grandchildren was mom’s joy in life. Although she would often voice her frustrations with stupid choices, many of the kids always seem to make. Mother always seemed to be on the go, or planning the next family gathering at Thanksgiving, Christmas or Fourth of July cook out and never forgetting a birthday of any our vast family members. She went as far as to call family reminding them of birthdays, prompting to call, send a card or the like.

Her choosing to live her life as a shut in, with no good reason any of us could understand for her to want to do so, had many of us disagreeing on what if anything was wrong with mom.

Mother and grandson James on the train
Mother and grandson James on the train
teddletonmr

Sundowner’s Syndrome

Is your mother a Sundowner?

California Zepher Traveling by train seemed like a good idea at the time. Think about it, with the promise of all the stunning vistas along the train tracks, surely the trip would be a memorable experience for mom and the kids, and just the ticket to get mother out of her house for a while. It was a trip of childhood dreams coming true.

Starting by climbing aboard the California Zephyr in Chicago Illinois, the Amtrak made its way through the Midwestern US states. Our trip would take us through the Colorado Rocky Mountains, on our way to visit my little bro and his family in Morgan Hills CA.

California Zepher Coach Car The first night of our family vacation train trip, was anything but relaxing for the wife and I. Our four kids, if you can imagine, were the least of our worries. Exhausted from the day’s activities they went to sleep as soon as their heads hit their pillows. Mother on the other hand, was quite another story.

Disorientated, mother actually believed she was in her home, and could not understand why there were strangers sleeping in her bed. Mother honestly believed the train car was her bedroom, and got extremely agitated with us, for stopping her from undressing while standing in the aisle between the seats of the train car. Making matters worse, my own mother did not recognize my dear wife or me at the time all this was going on. By the way, this went on all night, and every time the train would stop, mother would try to get off the train because she needed to get in her car and pick-up something from the store. After all, her youngest son and his family were coming to visit her, and she needed to pick-up a few things.

While making my way to the rear of the train, and the restroom, as I put my hand on the back of one of the seats. Someone gently touched the back of my hand, in a soft sympathetic female voice asked, is your mother a sundowner?

What is Sundowner's Syndrome?

People with Alzheimer’s disease or dementia
In medicine, sundowning, also known as sundown syndrome, is a syndrome involving the occurrence or increase of one or more abnormal behaviors in a circadian rhythm. Sundowning typically occurs during the late afternoon, evening, and night, h...

Confusion after sundown

Sundowner’s Syndrome affects many sufferers of Alzheimer’s disease or dementia

Taken aback and dumbfounded I was completely unaware anyone on the train was anything other than annoyed by the goings on with mom. Come to find out, several folks had silently been keeping a watchful eye on what was going on with mom, my wife and me, imagine that.

The face of Alzheimer's This beautiful human being without question had an emotional connection to the heartbreak of this form of Alzheimer’s disease and dementia. Having went through similar symptoms with her mother, who had recently passed away. The ensuing conversation seemed to be therapeutic for this woman still grieving not only her mother’s passing, but also the way in which the disease affected her and her mother’s relationship. Although happy to share her experiences and the things she had learned having to cope with the challenges of Sundowners syndrome, Alzheimer’s disease and dementia, I could not help but get the feeling; she had not yet come to grips with her sense of loss and the pain she felt as a result.

After all, I believe we can all understand how coping with the overwhelming effects of Alzheimer’s disease after sunset, and during the long nights of winter would exhaust us all.

Coming to terms with Alzheimer's

Coping with the loss of loved ones is not an easy thing to do

Reading and hearing about how bad Alzheimer’s is and its effects on folks, and living with the pain and suffering brought about by Alzheimer’s are entirely two different things. First off living each day with the changes the disease brings makes understanding the debilitating disease a life changer regardless if we want to admit it or not.

For me meeting the lady on the train that night was one of those once in a lifetime chance encounters, or for those who believe, was it?

The thing for me was I had so many questions I would have liked to ask the woman who had obviously a better understanding of what lay ahead than I could have imagined. Nevertheless, as quickly as she had gotten aboard the train that night, she had reached her destination and got off the train. Now that I look back on it, that kindhearted woman did answer questions, I did not even know or have reason to ask until now, for that I am grateful. 

 

Alzheimer's disease and the loss of loved ones

Watching a loved one lose their memory, personality and their dignity is both heart breaking and extremely difficult to accept

Alzheimer’s has altered mom in ways I will never forget. There is something about dear mother’s blank expression, the look of frustration and fleeting moments of clarity that are fewer and farther between that are crushing to both her and those who love her. That has me struggling with my intellectual understanding of the disease and emotionally accepting the mother that I once knew is now lost to me. The stories we once shared, the Christmas morning traditions, Thanksgiving meals at mom’s house and just wanted to catch up phone conversations we once shared of my memories are all I have left of the good ole days.

Mother although now just a shell of her former self, mom still greets people that visit her with a smile, and seems to be comfortable with her surroundings. No longer living in her home, mom is in the Alzheimer’s floor of a nursing home. Waiting for someone to help her in and out of bed, the bathroom and making sure she eats these days is as good as it gets. As my siblings and I learn to cope with the effects of Alzheimer’s disease.

Writing this article, Waking and Dealing with Alzheimer a Families Real Life Accounts, is no easy task. However, I do believe in doing so will help folks like you, and me, better understand our quality of life is precious let us not take it for granted.

Please feel free to post your thoughts, experiences or helpful suggestions in the space provided below. Anyone with something they wish to share privately, I welcome your private message  

Be well, Mike

Mother visiting her dog and home 2011

Mom her best friend relaxing in their favorite chair :)
Mother visiting her home summer of 2011
Mother visiting her home summer of 2011
teddletonmr

Remain Close by Guest Writer Katiem2

There are ways of remaining close and building new bonds with family members who suffer with Alzheimer's.
My Personal Experience with Alzheimer’s
Katiem2 profile This story touched me deeply as my mother has Alzheimer’s.  As I read Mikes story I realized how valuable his message was plus I understand how difficult it must have been to write.  I myself have tried and failed as it is painful to process. My mother is the last person anyone could imagine getting this disease.  She’s been such an inspiration and a very positive light in the lives of many.  She’s always been the optimist quick to lift the spirits of anyone who in need.

Dealing With a Parents Disease

Dealing with the vast changes of aging is difficult alone and yet accepting a Alzheimer's diagnosis is difficult at best.
Although I find this hard to write I felt I should contribute something of great importance to anyone dealing with a loved one and Alzheimer’s. I’m by no means a professional but my mother now lives in one of this country’s best facilities specializing in the care and treatment of Alzheimer’s patients.  My Mom has declined far more quickly than I had imagined.  I have watched as she struggles to figure out who each new face walking into her life is and how to best deal with them, talk to them as my mother is still that caring positive person she once was.  On one particular day that person before her was me; I watch the confusion flood her face as I walked into her room and said, “Hi Mom.” She had no idea who I was.  Imagine some stranger walking into your home calling you Mom?  I realized quickly what was happening and decided from that day forward to greet her with a simple, “Hi, how ya doing?”  This worked.  I followed her cues and was pleased as to how this eliminated the frustration, fear and confusion.

Learn to Speak Alzheimer's

You can communicate and enjoy carefree relaxed conversations that will help both you and your loved one.

How Family Can Help

There is a great deal family can do to bond with their loved ones.
Many family and friends spent countless hours trying to convince my mother who they were, where she was and what was really going on.  They felt the need to correct her, help her back to reality as we knew it.  I chose not to do that.  I wanted more than anything to provide my mom with the very thing mothers give their children all their lives, comfort and that beautiful feeling of safety and unconditional love.  I helped others to realize this was the best way to approach mom.  It worked, I no longer see that red glow of confusion and fear overcoming her when others expressed their concern for her loss of reality.  We meet her on her own ground, if she thinks I’m her dead sister Becky on a given day, that’s who I am.  If she picks up the phone and randomly dials till she gets someone, and that someone is me I become who ever she thinks she’s calling.  I realize she is either scared or lonely and talking to her in that moment in time, being who she thinks I am brings her comfort, warmth and a sense of satisfaction in having communicated and shared with another human being. 

In The End - Dealing With The Loss

In short this disease takes from those who suffer with it things we may never fully understand, what we can understand is the need for human contact, communication and acceptance.
The most beautiful thing in the entire world is to see my mother smile, hear her laugh and share things I may have never known if I hadn’t realized the magic of being who she thinks I am on any given day. 
There is a way to embrace and love your family and friends with Alzheimer’s.  Meet them where they are, let them lead the conversation, accept this is their reality and it is as important to them as our own daily lives.  Allow them a sense of belonging and purpose. This will provide your loved one so much comfort, love and joy. 
I know they can still enjoy life if only we, the world around them, approach them with the compassion and understanding of their place and time each new day as it may change at any given moment. 

Create Moments of Joy

That's what it's all about creating as many moments of joy as you can for your loved one.
Imagine helping them to feel less lost, trapped or worse yet misunderstood all the time.  Can you?  It really can be that simple all you need do is stop denying what they think today is, they are, you are, the world around them is as they see it and is very real. 

Gift ideas for a loved one with Alzheimer's disease

Helpful reminders make life a bit easier when forgetfulness is a problem

Who is teddletonmr

Oldest son, husband and father
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Updated: 05/27/2013, teddletonmr
 
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teddletonmr on 09/12/2013

jptanabe, I am so sorry to hear about your mother. Alzheimers is hard on a family.

jptanabe on 09/06/2013

My mother had Alzheimers too. She was living with my sister and her husband so she was the one who dealt with the daily problems, but we discussed many of the issues you write about here.

JoHarrington on 09/05/2013

I'll pass that on to her, and keep you updated as she really gets going in earnest.

teddletonmr on 09/05/2013

Thanks for the heads up Jo, god bless Kate. :)

JoHarrington on 09/05/2013

My friend Kate is currently fund-raising for Alzheimers. She's planning to walk across the Himalayas to raise even more.

teddletonmr on 05/31/2012

@sandyspider hated to hear about your father and mother.
The effects of Alzheimer’s and related diseases change the lives of many families. From my experience, coping with the challenges, can be overwhelming at times. The most difficult life changers, the ability to accept, come to terms with and understand the complexity of the disease the biggest hurdle to overcome.
Be well, Mike

sandyspider on 05/31/2012

My father-in-law that this. Not sure if my mother had this but she was losing it the last few years. Very touching story about your mom.

teddletonmr on 05/10/2012

Mladen thanks for for your kind words. We all dream, wish and pray for the discovery of not only the causes of this dreaded disease. Effective treatments for Alzheimer’s disease and its effects on our friends, neighbors and loved ones will be a great thing indeed.
Be well, Mike

Mladen on 05/10/2012

An axcellent article on Alzheimer's disease. I am sorry this happened to someone close to you. I can only imagine how devastating this is for the sufferer and those around him/her.
We are far from understanding how brain works. But there are some good news on this field coming from scientists recent years. It would be great victory for human kind if we could be able to win this horrible condition.
Thank you for sharing this story with us!

teddletonmr on 04/30/2012

@AgingandDisability thanks for sharing your thoughts, welcome to Wizzley.


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