It’s difficult at times
to face grief with a smile.
It’s hard to make myself believe
It will pass in a while.
And when the pain is sharpest
Words are to no avail.
When tears fall hot and heavy
The best intentions fail.
And yet however heavy
The burdens that I bear
When no one else will listen
My girls will always hear
When no one else has spare time
They will lend a hand.
Although some forget me,
My daughters understand.
I asked my husband; “What did you eat for supper?”
“I haven’t eaten supper yet,” he replied.
BUT – If I had asked; “Did you enjoy the baked salmon this evening?”
He would probably have said; “It as really good. I like it best when you prepare it that way.”
His short term memory was incapable of retaining the information that he had eaten supper, but his long term memory was unable to give details from times gone by when he had taken an interest in the way I cooked. As the disease progressed, he went further and further back in time.
I heard about a patient who longer recognized herself in the mirror, but, she knew that she was the young woman in the snapshot that was shown to her, taken when she was young.
Homer, who suffered from Alzheimer’s disease, said:
Our value lies in what we are and what we have been, and not in our ability to create the recent past.
Caring for someone who had always cared for me, was difficult to accept. A part of me was ripped apart as I watched the daily losses my husband suffered as he slowly slipped away from me. Alzheimer’s is a devastating disease but my family decided to celebrate every bit of life that we could, and gave my husband, their father lots of love and support.
There were days when I wanted to remove myself from the chaos in my husband’s mind because it was so painful to witness, but love kept me going.
I found it strange that the disease that is known for robbing memories, actually brought so many memories to mind. Memories of the years spent together flashed across my mind as I watched his deterioration.
There were days when we listened to opera, which sometimes sparked a memory of time gone by. When I felt worn out or sure I could not last another day; when the sadness became too much to bear; I thought of the good things that had occurred in our lives.
I replayed parts of the movie, The Bucket List starring Jack Nicholson and Morgan Freeman which I loved. Well, I have taken a page out of their book and made my own Bucket List. My daughters are dying to know what I listed there but I only shared two items with them. I have always wanted to see Opera in a super-special setting and I did. .. Carmen. Item two on my list is planning a trip to faraway places and although it will take time, I am busy with that right now.
While I still have my health, I intend to live every day as if it were my last.
In order to determine whether a person is suffering from Alzheimer’s disease, they are given what seemed to be a simple test. My husband was given instructions and asked to follow them:
- To identify the day, the date and the time.
- He was asked a few general knowledge questions like; who is the president of the United States?
- He was asked to pick up various objects in the room and move them to other specified places.
- The social worker asked him to repeat a few sentences that she enunciated slowly and clearly; in the same order.
- He was asked to draw a clock.
I was given few ideas of how to cope with the situation. She told me to be sure to take my husband for regular medical check ups and then, I was on my own. Someone else suggested that I read a book called the 39 Hour Day, which I bought, but was not sure whether I wanted to know what was waiting for us. I preferred to take each step as it came; each day as it arrived.
When I invited friends over, I made sure that there were two couples so that the men would continue their conversation even when my husband ran out of what to say. The children and I made sure that he joined us on family outings and celebrations. I tried to provide a peaceful, supportive, calm environment at home. He needed a whole lot of time in order to complete any task which needed patience and reassurance. I removed the only scatter rug we possessed and replaced it with a non-skid carpet.I discovered that disposable glasses were far too flimsy and always keeled over; hardy mugs were more practical.
The human brain, the organ that performs so many critical functions, only weighs 3 pounds; 1.36 kilograms – which amazed me. I keep going back to those weights and wonder how an organ this small, can carry out so many complicated tasks.
Share a smile or friendly greeting with someone on the street.
It will bring a ray of sunshine to that person you might meet.
Share a little act of kindness which could brighten someone’s day
It could bring a spark of courage to one who’s lost his way.
And you’ll feel much better for it; it won’t cost a single dime.
It could make a world of difference to share a minute of your time.
‘Dementia is a terrible, heart-breaking disease, and tackling it, is a personal priority of mine,’ said David Cameron, Britain’s Prime Minister in May this year. He continued: ‘Two months ago, I promised that we’d lead an all-out national fight-back against dementia, and now it is happening.’
Mr. Cameron launched a campaign to make the UK a world leader in dementia care and research, as part of his National Dementia Challenge.
Three key areas where Government aims to make a difference have been identified:
- Making sure that health and social systems are properly geared up to deal with the crisis.
- Radically stepping up research into cures and treatments with an overall funding for research doubled to reach 66 million pounds by the year 2015.
- Getting society involved in this fight which means communities, charities as well as businesses.
Worldwide, there are an estimated 18 million people with Alzheimer’s disease and in 20 years’ time, this figure is set to almost double to 34 million.
My wish is that politicians all over the world follow David Cameron’s example. But, I would like to add Schizophrenia, Parkinson’s and Gaucher’s disease to this list. Every politician should bear the following in mind:
TRUST TAKES YEARS TO BUILD, SECONDS TO DESTROY, BUT FOREVER TO REPAIR.
I remember an occasion when my husband and I visited a specialist. His secretary told me to go into the doctor’s office, which I did but he was still typing information on his computer and did not look up when we entered. When he asked us to sit down, my husband did but I remained standing. He repeated; ‘Please sit;’ once again without looking up so, I remained standing. Realizing that there might be a problem, he looked up at me. Then I smiled and sat down.
“Is there a problem?” he asked.
“Yes, doctor. Actually there is. If you had looked up when you invited me to sit, I would have done so immediately.’
Of course, he could have become angry and refused to see me but I had the feeling that he respected me more after that.
I realize how busy doctors are and how little time they have for each patient. I also understand their need to update computer records. This is only a suggestion. Maybe the nurse should only send in the next patient when he is done. I think that quite a lot of information can be gained simply by observing the patient as he or she walks in; before the doctor even starts the examination.