Monthly Archives: July 2012

And I pray that one day, someone will be kind to me when the time comes …

A person suffering from Alzheimer’s disease needs to be productive for as long as possible. Whatever he/she can do is fine, be it playing a card game, painting, drawing or even playing a board game. If that person has a hobby, try and keep that interest going even in a lesser manner..

 I think that it is very important to treat this kind of patient as an adult and not like a child. No one likes to be spoken to as if they are a kid.

His/her expressed feelings should be taken seriously.

They should live in a safe, structured and predictable environment.

Going out should be undertaken at least once or twice a day.

I found that physical contact was important. This can include hugging, caressing or even hand holding.

After hearing the shocking diagnosis of Alzheimer’s, my husband’s denial allowed him to collect himself after hearing the news.

It is essential that a care-giver use humor. There can be times when the care-giver might want to continue sleeping but the patient wants to go out the moment daylight seeps into the apartment. A joke would be appropriate here. My husband often saw early risers straggle into the street for their early morning walk.

 It never ceases to amaze me that someone who once hosted such a brilliant mind, could be vanquished by this illness. Caregiving is a lonely thankless, tiring, sad, never-ending occupation.

And I pray that one day, someone will be kind to me when the time comes.

Young love is about striving to be happy. Love between two seniors is about striving to make someone else happy

 

No politician ever gained votes for championing people who suffer from Alzheimer’s Disease and now that so many of us worldwide are living longer, I would like to see more money directed toward research in this field.

Imagine a person suffering from Alzheimer’s disease who is standing in a desert during a mild sandstorm. He might look like a sand sculpture, yet, some sand will be worn away by the weather and as time goes by, it will gradually lose its original form. That is more or less what happens to the brain of an Alzheimer’s patient.

 A woman of 70 that I once knew was unable to recognize her children and suspected that people were trying to rob her. Minutes after she’d eaten, she’d forgotten that she’d ever put anything into her mouth and asked for something to eat.

 It was important to me that my husband always  be called by his name rather than the man with Alzheimer’s.  Even today there are those who are reluctant to talk about this illness as it carries with it the stigma of mental illness. Stigma and prejudice against a person with Alzheimer’s disease is a significant obstacle to the well-being and quality of the lives of those with dementia as well as their families. Stigma is very real, very cruel and widespread.

 My husband once said; “I feel as if I am disappearing, yet I still know what love is about.” Then he continued; “Young love is about striving to be happy. The kind of love between two seniors is about wanting someone else to be happy.”

He found writing difficult and once I watched him painstakingly scratch the following onto a scrap of paper, using a pencil so small that to me, it resembled a toothpick in his hand.

  • I am the same person I always was.
  • The more people that talk about this illness, the faster there might be a cure.
  • I only tell good friends that I have Alzheimer’s because there are others who make me feel as if I have to be on my guard all the time.
  • I don’t want to be categorized because I am afraid I might get lost in the stereotype.

 

 

I try to act without rancour or blame, because tomorrow, it will probably be the same …

Day after day he searches to find

Objects mislaid due to his mind

A mind once so brilliant and so very keen

Probing, asking since he was a teen.

 

It seems to me in some strange way

His mind is dealing with long ago days.

His sentences are few and brief

His loss of memory causes him grief.

 

Doctors describe dementia to the letter

But living it describes it better.

Sometimes things seem nearly  okay

So then we take things day by day.

 

I use patience and dedication

And show compassion without frustration.

I try to act without rancour or blame

Because tomorrow it will probably be the same.

 

 

 

                       

May my mind and heart never forget that the good times in her life far outweigh the petty irritations of her present situation in the Alzheimer’s Ward

 

 

My best friend has lived her threescore years and ten. Fate has denied her the strength of mind and body which many others are lucky enough to keep until the end. For her, there is only helpless confusion and utter dependence. Worse still, she has lost her love of joy and beauty which once enriched her life and could have enriched her senior years but for the cruel, distorting curtain that hangs between her and all her memories.

 I try to see her the way she was; her past which was so good and not this sad present. She was a happy girl, one who planned, danced and sang. She grew to be a fine woman, served her country well in peace and in war, worked, laughed, loved and brought splendid children into the world. The saddest thing is that those richest of gifts have been long forgotten.

 I constantly remind myself how I appreciated her wise counsel and friendly words of comfort when I listen to her incoherent mumbling of today. And, may my mind and heart never forget that the good times in her life far outweigh the petty irritations of her present situation.

When talking to someone with dementia. Never argue; agree. Never try to reason: distract…

 

 

When talking to someone with any kind of dementia

  • Never argue: agree.
  • Never try to reason: distract.
  • Never shame: change the subject. No one is perfect.
  • Never lecture: reassure
  • Try not to say: ‘Do you remember?’ Reminisce rather.

 I was one of the fortunate women who was blessed with a special relationship my husband, who remained my best friend; a man full of love and quiet wisdom who accompanied and supported me through the ups and downs of our lives. I am trying to move on.

I’m not a crabby old woman. Look closer, it’s me! Remember this jingle when you next meet a senior citizen who you might want to brush aside.

 

What do you see nurse? What do you see? What do  you think when you look at me?

A crabby old woman, not very wise, uncertain of habit with faraway eyes?

Who dribbles her food and makes no reply, when you say in a loud voice; ‘I do wish you’d try!’

She seems not to notice the things that you do, and is forever losing a sock or a shoe …

Resisting or not, lets you do as you will, with bathing or feeding, the long day to fill.

Is that what  you’re thinking? Is that what you see? Then open your eyes, you’re not looking at me!

I’ll tell you who I am as I sit here so still, as I do your bidding, as I eat at your will.

I’m a small child of ten … with a father and mother, brothers and sisters, who love one another.

A young girl of sixteen with wings on her feet, dreaming that soon a lover she’ll meet.

A bride at twenty; my heart gives a leap, remembering the vows that I promised to keep.

At twenty-five I have young of my own, who need me to guide them; plus a secure, happy home.

A woman of thirty,  my young now grown fast, bound to each other with ties that should last.

At forty, my young sons have grown and are gone, but my man’s beside me to check I don’t mourn.

At fifty once more,  babes sit on my knees, again we know children, my loved one and me.

Dark days are upon me, my husband is dead; I look at the future. I shudder with dread.

For my young are all rearing young of their own, and I think of the years and the love that I’ve known.

I’m now an old woman … and nature is cruel. It’s a jest to make old age look like a fool.

The body crunbles, grace and vigor depart, there is now a stone where I once had a heart.

But inside this carcass, a young girl still dwells, and now and again my battered heart swells.

i remember the joy, I remember the pain and I’m loving and living life over again.

I think of the years … all too few, gone too fast and accept the stark fact that nothing can last.

SO OPEN YOUR EYES, NURSES, OPEN AND SEE, NOT A CRABBY OLD WOMAN;  LOOK CLOSER, SEE ME.

Papa’s brain is broken …

 

Part of Papa’s brain is broken …

I placed a pile of dried beans on our dining room table, then took away a few at a time. “What are you doing?” our grandchildren  asked. “It’s a way to show you all  what is happening to your grandfather’s brain. Slowly, parts of it are disappearing like these beans.”

I continued;  ‘Papa has an illness that makes him act like he does. It isn’t catching. The rest of us are not going to get it but it’s like having a broken leg. When you break a leg, it is hard to walk the way you did before, right? Well, only little pieces of Papa’s brain are broken. Because of this, he can’t remember what you told him last week. Because of this, he forgets how to use the remote for the television. Because there is a part of his brain that is not working properly, it makes him fall asleep when you are telling him something important. BUT, the part of his brain that is meant for loving, works well and Papa loves you all very much.”

“Why doesn’t he go to the doctor?” one of them asked.

“He has been, my darling.”

“So what did the doctor tell him to do?”

“He gave Pappa pills to take.”

“Will he get better?”

“He probably won’t  get better, but the pills might help him stay the way he is right now.”

In difficult circumstances, somehow we manage to find great inner strength and courage …

Today  I would like to introduce Elaine Benton, who has been my guest blogger a couple of times:

Being a caregiver is probably one of the hardest tasks I can think of. To stand by helplessly watching as a degenerative disease grabs hold of a loved one, is a heart-breaking role to play. Trying to comprehend and understand what someone is going through on a daily basis is far from easy. Accepting this unexpected and uninvited position in life, which changes plans for the future and throws everything awry, yet being able to continue loving unconditionally whilst caring for someone who’s suffering a debilitating disease, takes great heart and shows immense dedication. In difficult circumstances, somehow we manage to find great inner strength and courage. I am sure that many people have walked in these shoes, as I have done. I took care of my mother for several years as dementia slowly and cruelly stole the wonderful, vibrant, competent woman she once was, leaving a shell of her former self behind, that I barely recognised. The only saving grace was that when my mother was starting to lose touch with reality, I was diagnosed at the age of 44 with Parkinson’s disease, and strange as it may sound, due to the dementia, she was spared the heartbreak of knowing this information. I said “goodbye” in my heart every time I visited my mother, as she daily slipped away from us, unable to communicate or comprehend. It was a long farewell, over several years that pulled at my heartstrings; I couldn’t bear visiting her in this condition, yet couldn’t stay away.

(Written by Elaine Benton, author of “Parkinson’s, shaken, not stirred” www.elainebenton.net

 

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True love is an acceptance of all that is, has been, will be, or may never be …

 

True love is an acceptance of all that is, has been, will be, or may never be … and every evening we danced to music from the 60’s. I wanted to regain the closeness that dancing brings with it and I saw a spark in his eyes when I chose our favorite; I just called to say I love  you.

Aware of my husband’s slow decline, I expected him to slip into a depression, but, he did not. He continued to make the most of adversity the way he has always done. I picked up his cue and we decided to take each day as it came, bearing in mind his favorite quote that I have used and will continue to use:

Grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.

He continued to play bridge whenever he found a foursome and his bridge friends told me that he played a fairly good game. I hovered, watching him lose his short-term memory while noticing that his long-term memory was becoming quirky, with some images so out of focus that he could not pull them together. It seemed as if his life had become like a puzzle. It was as if someone had taken it apart when he wasn’t looking yet he had no idea of how to join the pieces together again.

We can forget those with whom we have laughed, but we can never forget those with whom we have cried.

“We can forget those with  whom we have laughed but

 We can never forget those with whom we have cried.”     …   Kahlil Gibran

It took a long time for me to gather and process all the information I possibly could about Alzheimer’s, bearing in mind that  no two cases are the same.

Alzheimer’s Disease is one of the most serious and progressive forms of mental deterioration and impacts a part of the brain that controls cognitive function including memory, comprehension, thought processing and language capabilities. My husband was diagnosed with Alzheimer’s but managed to play bridge until a couple of days before he died of an anoxic brain disorder (stroke).

He was also able to walk alone every day as long as he kept to a specific route. Of course I made sure that he had a cellphone at all times which only had one number on it … mine. He also wore a medical Alert bracelet with his name, address, telephone numbers and the word Alzheimer’s engraved on it.

His doctor prescribed one of the cholinesterase inhibitors, Exelon, which does not cure, but might slow down the progress of the disease.

He lived with the progressive medical, cognitive, emotional and financial challenges as they occurred. A day care center was vital at a certain stage as he needed company and organized activities. He attended a few times a week towards the end and I am only sure of one thing; he needed people to interact with and family with a lot of patience, undeerstanding and love.