Monthly Archives: June 2012

“Birds fly in to nest under my bed,” said this frail lady; someone’s mother ….

Today’s blog was sent in by a woman whose mother suffered from Alzheimer’s for many years. Anyone who has been in her position can identify with her.

Dear Mom,

Many years have passed since you died and I need to share with you the journey we took together during the last ten years of your life. 

Remember when Dr. G knocked on the door of the beautiful retirement home you chose to live in? He examined and questioned you about your state of mind. It was at my request as I felt you were experiencing a degree of depression and thought medication might help. You were indignant with me for calling him, telling me you had never experienced   depression, that it wasn’t in your nature. A few months  later when I asked a social worker specialising in dementia to test you, you were delighted with the lady who came to play `games’ with you and proudly showed me the page of pictures you’d been required to draw for her; a clock  at 10 o’clock, a traffic light showing green and a smiling face. I admired the unrecognisable scribbles you had produced and your comment was:

“I am not as stupid as you thought and can still do everything that is asked of me”. There were lessons to be learned. It was the onset of Alzheimer’s and while everyone around you was aware of the changes, you were oblivious to them.  It guided me in how to react to the nonsensical events you described to me as time went by. Every night when the lights were out someone opened your window and birds flew in to nest under your bed.” Then there was the morning you asked me if I had any idea where you had slept the night before? You explained that your whole unit had been taken to the police station and you were put into a cupboard at the charge office to sleep.   Due to these hallucinations, I questioned the staff about what could have triggered them. There was never a reason: it was all in your imagination.  I had to learn to play the game with you.  There were days when I laughed at our conversations, but more often than not, I cried.

As the disease  absorbed your mind you started chanting numbers; first the multiplication tables and then random numbers. You’d had a wonderful memory for telephone numbers in your youth and I am sure it was this that prompted you to chant numbers; a subconscious attempt to show the world you still remembered them.  I was amused to see the nurse aides at the home writing some of the numbers down that you kept repeating in order to choose them for the weekly Lotto. 

Your friends  found it too stressful to visit  and on occasion when someone close made the effort to greet you,  you’d ask politely, “And how are you? And how is the family?” When they left your side you’d ask, “Who was that? I’ve never seen them before.” Then you retreated completely into your private world of turmoil and sat all day with your eyes closed, only opening them when I told you it was me and that I’d come to say hello. There were days that you wouldn’t let me leave and many when you closed your eyes in dismissal within minutes of my arrival.

When those gentle blue eyes closed for the last time I took your cold hand in mine and asked for a few moments of privacy to take leave of your body that lay in repose. I hope that the spirit still hovering close by knew and understood the language of my heart expressed by my tears  as I kissed you on your forehead and left the room

   

Not only is there a stigma associated with mental illness, but with Alzheimer’s Disease too …

 

There is a stigma associated with mental illness. Is there a stigma associated with Alzheimer’s disease too ?

 I was asked to give a talk on schizophrenia and once again I realized how many needy people there were; people who had not managed to relate their schizophrenia stories and get feedback from someone who had been there, done it, lived with it for 16 years.

 Every time I give a talk, people ask me for my contact information. What astounds me is although I give them very personal information, they prefer to talk to me in private. And I understand where it is coming from  and I don’t mind as I take every single phone call and meet with people who have specific questions. I repeat that I am not a professional, only a mother who has experienced mental illness in her family. But, if we parents do not speak freely about our children’s mental illnesses, how will we ever manage to lessen the stigma associated with it?

After my husband was diagnosed with Alzheimer’s disease, I realized that there was a stigma to that as well. I met men and women who were unable to talk about their spouse’s dementia. Some no longer invited people over and others no longer went out, saying that their lives were over. I decided that I would try and keep the basics of our lives as ‘normal’ as possible, so I continued having friends over, always inviting  two couples so that the men would be able to chat as my husband did not talk much. We visited friends, watched the odd movie and walked along the beachfront. Together, hand in hand, we waited until the sun set over the Mediterranean, a spectacular sight indeed. 

 If people were able to talk about Alzheimer’s and Schizophrenia, there would no longer be a stigma. I know that it is not easy. It took me a long time to be able to say; “My son is suffering from paranoid schizophrenia.” But, once I did, it was so much easier. Keeping it all inside of me did not add to my health.

Our lives together somehow went askew, and only your smile remained part of you …

 I am no poet but this is what I once jotted down one night when thoughts of Alzheimer’s stopped me from falling asleep.

Your voice is stilled, your smile has gone

Memories comfort me and linger on.

Knowing you was a gift, a treasure

Loving you gave me much pleasure.

Implausible that the people you knew

Had become like absolute strangers to you.

You managed to play a fair game of bridge

Yet sometimes stacked crockery in the fridge.

I searched for signs of the man I once knew

So sad it was, as there were precious few.

Living day to day with your dementia

Felt like being married to you in absentia.

Our lives together went askew

And only your smile remained part of you.

The daily sharing in active living

Very soon evolved into daily care-giving.

The agenda you once had was long gone

And hours of inactivity stretched on and on …

There were many times when things were normal

Your behavior acceptable, and even formal.

And it seemed to me that in some strange way

Your mind was working like in the old days.

As a care-giver I did my very best

Whatever I could to pass this hard test

I used lots of patience and dedication

Even while in the midst of frustration

My dear, you knew that something was wrong

As you languished through days puzzling and long.

There was heartbreak in your plaintive plea

When you asked repeatedly; “What’s happened to me?”

Oddly it seemed that in some strange way

You were working on projects from former days.

Disconnected thoughts came out in conversation

Defying any attempt at clarification.

Stamps, coins and books once occupied you for hours.

You derived pleasure from music, plays and flowers.

Having  no agenda, there was no way

To project any interest for the following day.

You didn’t deserve Alzheimer’s in your life

You helped so many others in times of strife.

“Why our Dad?” the children and grandchildren asked.

But, to reply to that was an impossible task.

Physicians described dementia to the letter

But living beside it describes it better.

A support group was helpful, people were kind

They all knew what happened to your mind.

Love and patience were the two ingredients that worked best in this situation and, taking one day at a time.

She swam in the pool every morning until the age of 91 …

 

I believe that there are as many people with Alzheimer’s as with Cancer and according to statistics, the numbers will double themselves within a generation, so surely a fortune should be spent on finding the miracle cure? I was the spouse and I suffered as much as or even more than my husband. According to newspaper headlines around the world, I was sure that a fortune was being spent on research until the bubble burst when I discovered that money spent on research for Alzheimer’s is only about three per cent of the money going toward finding cures for all kinds of cancer. That was when I nearly went to pieces. I had similar experiences with Schizophrenia and then with Alzheimer’s. Imagine having both those problems in the same family?

 I thought back to the generation before ours. My mother died at  the age of 92. My husband’s mother died of old age. My father died at the age of 88 of old age. My father-in-law died when he was 80, after suffering from Parkinson’s for a long period of time. So, my mother was one of the lucky ones … she swam every morning in her black Jansen’s bathing suit which was so very outdated, that it prompted me to send a snapshot of my Mom in her pool outfit and suggest they use it for an advertisement. Their reply: “Thanks, your Mom looks wonderful, but if our bathing suits last for 45 to 50 years, we will be out of business very soon.” But, it was worth trying, now wasn’t it? She went walking daily, never took a single sleeping pill nor any other pill for that matter and died of a heart attack at the age of 92.

When one suffers from Alzheimer’s or Schizophrenia, people do not know what to say ….

 

When one suffers from an illness like Alzheimer’s or Schizophrenia people  do not not know what to say unless they have had it in their own family. There were individuals who asked why we spoke out about these illnesses. ‘Why not? ‘ I asked.  How else can we lessen the blame, shame, stigma and discrimination? People talk about diabetes, cancer and other illnesses, so why not about Alzheimer’s or Schizophrenia?

I am the kind of person who can only deal with my enemy if I have information on it, so I made it my business to gather as much information as I possibly could any way I could. I was determined to be the first in the line of people waiting to receive the cure when it arrived with much fanfare. Sadly, we did not last long enough …  not for Schizophrenia, nor for Alzheimer’s,  but I would like to believe that there is hope for the millions of people out there suffering from these illnesses.

I learned that life is not about how to survive the storm, but, how to dance in the rain.

What will they take away from me next? My husband was literally losing his mind …

Alzheuner’s disease does not only affect the patient. It affects the whole family. Each day seems very long and the biggest problem is how to fill them.

My husband of over 50 years, was literally losing his mind. He was anxious and confused and I was having trouble coping with  the fact that I was losing the husband that I loved and knew so well.  Then his doctor told him that he should stop driving and asked me to cancel his driving license. I refused. “You do it,” I said.  “What’s the problem?” she wanted to know. ” I had to explain that it would be far too painful for both of us if I had to be the one to make this onerous decision.  Not long after that, I was forced  to persuade him that one credit card between the two of us was sufficient. I’d found expenditures that were not in character with his way of spending. My husband turned to me saying:”I wonder what they will take away from me next?”  which literally broke my heart. But he continued to take his regular walks and played bridge.

All I could do was offer lots of love and support. In an effort to remind him of times gone by, I suggested that we dance the slow every evening. We danced to familiar oldies like; I just called to say I love you,’ by Stevie Wonder; Are You Lonely Tonight?  Blue Moon, I Only Have Eyes For You and I Will Always Love You. He moved his feet and held me close. I don’t know what it did for him, but it was good for me.

True love is an acceptance of all that is, has been, will be, and will not be. The happiest people don’t necessarily have the best of everything. They simply make the best of everything they have. 

 

 

“Alzheimer’s is a long, slow slide into oblivion with no brakes … “

 

Terry Pratchett wrote: “Alzheimer’s is a long, slow slide into oblivion with no brakes. If this were a paper journal, the ink would be running with tears. It’s a nasty disease, surrounded by shadows and small largely unseen tragedies.”

 

“Alzheimer’s is a long, slow slide into oblivion with no brakes. If this were a paper journal, the ink would be running with tears.”

The following description that I read somewhere, describes the process pretty well. Imagine a beautiful, perfect statue left out in the wind and rain for centuries to be worn away, until it only retains the shape of the person, without their individuality. That’s what Alzheimer’s did to my husband. It wore him away; took off all the sharp edges and crisp points that had made him my husband for over 50 years; the man who loved his family, his stamp collection, his work and his long walks, and turned him into a vague person. Fortunately, he retained his kind and loving nature and as amazing as it sounds, he continued to play bridge.