Many of us are caregivers to a person with Alzheimer’s. But we can never really know what it’s like to BE the person with Alzheimer’s.
To get a glimpse into the mind of a person suffering this condition is a rare insight.
This article was written by a friend for Michael Ellenbogen. A victim of early onset Alzheimer’s, Ellenbogen speaks out about his illness and how it has changed his life.
So much of my life has changed with this disease; household chores that were once second-nature, like cutting the grass, have become frustrating and difficult for me to perform.
I leave things lying around the house – not to be difficult, but because I have forgotten where they go, and I am also afraid that if they do get put away I will not remember where they were put.
I was once a very sociable person, but now I go to a happy affair only to be tortured by the noise and surrounding conversations because I am overwhelmed by the stimulus of sight and sound.
I don’t understand what people are saying; the words run together and they may as well be speaking a foreign language.
I can no longer write or speak like I used to. What you are reading now has been written by a friend of mine who helps me put my words onto paper.
My friends have become distant, and even when in their presence they will address my wife. Even when enquiring after me they rarely direct their questions to me.
This is heart-breaking for me, the fact that they feel they can no longer talk to me really saddens me.
To read the complete article, go to:
Final Instalment of a continuous narrative by Gemma Tammas.
While we are regularly visiting his doctors, two more inflections added to his failing health. Hearing loss, and cataracts. Many times, I have to shout at him because his hearing aid is not in its place.
Only yesterday, he was telling me about a woman, who was interviewed on the news, saying she traveled to San Diego to learn about a diet. Tom told me that woman became a nun.
“That’s what she said,” he insisted and it was no point to dissuade him otherwise. It wouldn’t have changed his mind anyway.
I help him to read as his eyes get tired and every phone call fell on my shoulders as Tom’s voice became scratchy, mumbling his words.
Losing his health big time along with his driver’s license, still he is asking “How can I help you?”
When I give in and tell him what to do, he forgets it and I have to control myself not to tell him off.
His memory is failing but he still remembers our phone number in Hungary fifty years ago.
When we are going shopping, he gets out of the car and starts shuffling in a different direction. I have to run after him grabbing his hand.
My life, our life, changed. We had to give up small pleasures like walking in the field for an hour with our dog, Heidi, going to the seashore for a stroll.
Heidi, our ten year old Rottweiler, recently became paralyzed from her waist down, unable to take only a few steps before she collapses, then I have to lift her up and put her on her feet.
Some days I question myself. Why, why me who is burdened to do all these things. Then I look at Tom, and I see in his eyes the suffering, the hopelessness, but still a tremendous willpower to live.
Then I pat Heidi’s head and I feel her energy passing through my body, and even in her crippled condition, she gives me strength to go on, to take every day as it comes and enjoy it to the fullest.
My heart aches, when I see both in reclining health, but still, I feel fortunate to able to take care of them.
Caretaker? Caregiver? I rather call myself a wife and mother.
Part two of a continuous narrative by guest author, Gemma Tammas.
One morning I found Tom tied down in a wheelchair in front of the nursing station.
His head dropped on his chest, saliva was dripping from his mouth.
“He was climbing out of his bed,” the nurses told me, “we had to tie him in the wheelchair and roll him out to the hall to keep an eye on him.”
“All these medications make him crazy,” I argued and from there on, I had no choice but to stay with him during the nights also.
After two long weeks, still feverish, losing half of his weight with gall bladder infection and against his doctor’s advice, I brought him home.
He was weak, not able to stand by himself. With my brother’s help, we would carry him to the bathroom, wash him on his bed and feed him, forcing the food down as he had no appetite.
Slowly he recovered his strength, what was left of it, and our pilgrimage to different specialists began. After six months and countless tests, he was diagnosed with Parkinson disease, Alzheimer and hypothyroid. As he already had a pacemaker, visiting his cardiologist three times a year was now topped with regular visits to his neurologist.
His medication ‘regime’ had to be set, and after six months, a routine was established. To help his memory and to help him to sleep better two more medications were added.
We follow a stringent schedule for his eating as he can only eat an hour before or two hours after with certain pills.
I was amazed how religiously he was taking the pills, he, who never took even an aspirin in his whole life.
Now, from 7am till 10 pm in the evening he is on a strict schedule.
When I wake him up at seven o’clock to take his first dosage – he kisses my hand.
But at night he seems more confused. When I try to put eye drops in his eyes for his glaucoma, I have to force his eyes open because he opens his mouth instead.
The next 3 posts are guest posts from Gemma Tammas, a continuous narrative in three parts.
by Gemma Tamas 2011 October ©
I am a wife, mother, grandmother, and great grandmother.
My career started when I was only eighteen years old looking after my husband, and soon, taking care of my two boys. All of that without having to take a course and study for; it was simply ‘learning on the job.’ But, if I would have given a test, ‘an aptitude test’ called nowadays, I would have passed, because all you needed was love and I had plenty of that. Through the years while ‘training on the job,’ I made many mistakes, too many to count, but my love never suffered by it, my passion to give unscathed.
Now, in my twilight years, I am still taking care of Tom, my husband close to sixty years, as he fights his many sicknesses, with great determination, as he fought his way through many obstacles and hardships during his lifetime. Our marriage was not a perfect one but we are together with a strong bond, called love, forever.
It started four years ago when one morning Tom woke up with high temperature, shaking feverishly, talking nonsense, but still he had enough strength or stubbornness to insist to drive himself to the Vancouver General Hospital. It would have been futile to argue with him to go to a much closer one. Swaying on his feet, jingling his car keys in his hand he dropped them and fell into my arms. With my brother’s help we lifted him into the car, where he slumped down. By the time we arrived at the hospital thirty-five kilometers away, he was unconscious and stayed that way for three days. During that time he was in isolation as the doctors didn’t know if he was infectious until they put him through rigorous testing, while battering me repeatedly with their questions. Was Tom drinking? Was he an alcoholic? I was shocked, offended by their interrogations as Tom never drank, maybe a glass of wine with his meal.
When his fever was under control and his tests showed no infectious disease, he was shifted to the geriatric ward. I spent my time by his bedside from morning till night. Every morning he greeted me with stories about the happenings on the ward the previous night. “Do you know,” he mumbled, “that old Chinese woman in the next bed is a drug dealer conducting her business on her cell phone at night, and another was murdered. Last night.” He whispered in my ears. “Two men, dressed in black, came and killed her.” His eyes filled with horror. “You have to get me out of here,” he begged. “I’ll be the next one, you’ll see.”
Thirty years ago, Chris impressed me, too. And I’m still impressed.
Valentine’s Day is special for me as a spousal caregiver. Because I know if I was looking after someone other than Chris? Maybe I wouldn’t have the same attitude.
I feel a very deep concern for those who care for loved ones with dementia. It is not easy to get time away. It is not so companionable to constantly be with their charges. These caregivers face a much more challenging situation and my heart and admiration go out to them.
One woman told me how she fell ill and had to be hospitalized herself. Her husband became violent with the substitute caregiver the agency sent.
Because I wouldn’t be there to serve him, she said.
I thought ‘serve’ was a revealing choice of words. It would never occur to me to describe what I do for Chris as serving him.
I’m lucky—Chris is so good-natured. If I put off making breakfast while I’m writing? He’s fine with it.
You might say, well what choice does he have? Who will look after him if you don’t? And you’d be right. But a lot of men and women as their health deteriorates? They get mean. Spiteful. Bitter.
I take pride in caring for him, just as all those years, he took pride in providing for and caring for me.
I”m lucky because he likes me to look after myself, even if it means an hour or so away from him—to see a friend, do a little shopping or go for a mani/pedi.
He exclaims with pleasure when I buy fresh cut flowers for the house. A lot of husbands would consider it a waste of money.
Looking after Chris? I’m glad I fell in love with him thirty years ago. He faces his situation with courage and humour, and when he wraps me in his arms? It’s still the best feeling in the world, Valentines Day and every day.