Category Archives: Alzheimer’s

Alzheimer’s: Watching Bits of Yourself Vanish Down a Dark Hole.

When the famed ‘Alice” of Alice in Wonderland watched the white rabbit disappear down a dark hole, and then followed him, strange and terrifying things happened to her.

Having Alzheimer’s must be a bit like that.

My mother was a gentle woman with a wry sense of humour.  At the age of twelve she had been sent out to work as companion and general help far from her home.  I never heard my mother express self-pity or regret.  But when Alzheimer’s began to rob her of her recall, I could see it was destabilizing, like having the rug pulled out from under her mental and emotional footing.

I was visiting her and Dad one day and Mom was determined to challenge Dad’s statement that Mom can’t remember things anymore.

Jerry was here today, she told me, looking at Dad to make sure he was listening.

Yes, he came this morning for coffee, Dad confirmed.

We had a nice visit, Mom said, smiling at me.  Dad nodded.

And Jean and Roy are coming over tonight to play cards, she announced almost triumphantly.  Again, Dad nodded.  Yep, he rubbed his hands together anxiously and turned away from us to look out the window.  They sure are.

Mom smiled and nodded her head in satisfaction as if to say Point proved!

She was getting up to make tea when she looked down and saw a well-used pill pack on the table beside her. Frowning, she picked it up, looked it over and said, Whose are these?

They’re yours, for goodness sakes! Dad said, unable to keep the irritation out of his voice.

Mom’s disappointment was palpable.  Her shoulders sagged, her eyes filled with frustration and fear.

It hurt, to be ambushed by her own mind.  To have this common, everyday information disappear down a black hole.

I could see that this sudden loss frightened her, caught her completely unaware. She was blind-sided by a gaping hole in the kind of memory that we all take for granted, that she had taken for granted all her life.

How terrifying to live with a memory thief inside her head!  So much of who we are now is made up of the memories we treasure and share; and so much of our expectation for the immediate present comes from. our short-term memory, from absorbing and retaining the content of recent and current conversations.

As caregivers, sometimes the best we can do is  recognize the trauma of this ongoing loss and admire the coping skills that our Alzheimer’s-inflicted loved ones have developed.

Margaret Jean.

 

Ten Things I Learned from the Caregiver’s Expo

The Burnaby Seniors’ Outreach Society’s Caregiver Expo provided a fount of information.  It was a pleasure to meet  speak with Helena, following up on our initial phone conversations.  If you weren’t able to attend the Expo earlier this month, here is a cheat sheet of valuable information: ten things I learned that I believe will prove helpful to caregivers.

  1. NIDUS: Is an organization established in 1995 to provide both information and assistance with Representation Agreements.  Nidus now serves as a registry for all the documents that outline your instructions for care should you become no longer capable, due to accident or illness. Materials and information are available on the website:  http://www.nidus.ca

  2. CAREGIVER EDUCATIONAL SERIES: Is available in Burnaby, through the Burnaby Seniors Outreach Services Society.  This is a six week course presented twice a year on how to alleviate, manage and improve the quality of life for the caregiver and the care-recipient.  More info is available at : https://www.bsoss.org/index.php/contact-us

  3. PARKINSON SOCIETY OF BRITISH COLUMBIA: Provides free counselling for those who have Parkinson’s as well as their loved ones. Other services include a network of over 50 support groups, province wide.  Contact them at http://www.parkinsonbc.ca

  4. BONE BROTH: Is made from bones from organically raised and humanly butchered cows, the bones are simmered in water for up to 36 hours. The resulting broth is said to reduce joint pain and inflammation, promote strong bones and heal and seal your gut, promoting healthy digestion.  To find out more, or to place an order call 604-432-9961.

  5. ALLIES IN AGING:  Is the mantra of the Family Caregivers of British Columbia (FCBC).  This organization provides many supports, one of which is a magazine called   The  Caregivers’ Connection.   To sign up for this publication, follow this link: http://www.familycaregiversbc.ca

  6. FREE LEGAL CONSULTATIONS FOR SENIORS: Is available in New Westminster, Surrey, Burnaby, North Vancouver, and Vancouver.  To find out more about this priceless resource, call 604-336-5653.  Or learn more at http://www.SeniorsFirstBC.ca

  7. RESPITE STAYS: Joel Grigg of AgeCare Harmony Court Estate advised me that care-recipients can come to stay at their retirement home for $90 a night.  This includes meals, overseeing necessary medications, full access to facilities along with support staff availability.  For the lower mainland this is a great bargain; it can grant peace of mind to the caregiver during a much-needed break.  For more information go to: http://www.agecare.ca.

  8. SAIL: Stands for Seniors Abuse & Information Line. 1-866-437-1940 available weekdays 8 a.m. to 9 p.m. with interpretation available on request from 9 a.m. to 4 pm weekdays, except for holidays. All calls are confidential.

  9. LEGAL DOCUMENTS: I learned that

    1. Wills cover everything after death,

    2. Power of Attorney covers legal and financial matters while one is alive,

    3. And a Representation Agreement appoints someone to make health and personal care decisions as you have instructed, on your behalf if you are incapacitated due to illness or accident.  For more information, contact Nidus, (see #1 on this list) or use your free 1/2 hour legal consult (#6).

  10. CAREGIVER SUPPORT: Caregiver Support is available in BC, often through the organizations that provide information and support for the care-recipient’s illness, such as the Alzheimer’s society, the Parkinson’s society, and the cancer society.  There are also community and hospice caregiver support groups which are often free. Contact Fraser Health Services or Vancouver Coastal Health to arrange for a free assessment of the services for which you qualify, and a determination of costs.

    And I cannot say this often enough: the best way to find support?  Call your local hospice society offices.

The Caregiver Expo happens every year in Burnaby and the exhibitors offer valuable information ranging from the price of retirement housing to government, private and volunteer agencies that are in place to assist in the process of caregiving.

Caregiving is demanding and often frustrating as well as rewarding.  To give and get the most out of this journey, it is important to care for yourself.  These resources will help you to do just that!

Margaret Jean.

 

I Have Alzheimer’s: Michael Ellenbogen

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:

http://www.everydayhealth.com/columns/my-health-story/early-onset-alzheimers-disease-michaels-story/

 

Alzheimer’s: A New Therapy?

En route to Phoenix this week, I discovered an article on ground-breaking research by Dr. Paul Alan Cox into what scientists call the “tangle diseases”.

Alzheimer’s, ALS or Lou Gehrig’s disease, Parkinson’s, Lewy’s Dimentia, Pick’s disease and supranuclear palsy are all caused by a build-up of placque and misfolding of the proteins in nerve cells.

Cox, who has studied this affect in several countries over a number of years has established research that may suggest that an amino acid known as L-serine could prevent or slow the onset of tangle diseases.

Cox believes another amino acid called BMAA, when consumed in massive amounts becomes a toxin, replacing L-serine.  The absence of L-serine then allows the breakdown of proteins, causing the build up of placque and killing nerve cells.

He found one society which was free of tangle diseases.

“Centenarians walked as gracefully as ballet dancers,” Cox reported.  He found their diet was rich in seaweed and tofu, two foods known to contain high levels of L-serine.

L-serine is available as a powder through Amazon.

L-serine is also a natural component of tofu, seaweed, sweet potatoes, and author Jay Heinrichs adds, “even bacon”.

Currently the FDA is looking into the sale of L-serine as a supplement.

The information in this article comes from the article “The Storied Man” by Jay Heinrichs in Southwest, the Magazine. September 2016 edition.

Alzheimer’s Reading List

A client of mine lost her husband to Alzheimer’s last year.  As his main care giver, she  read everything she could find about people’s personal struggles with Alzheimer’s.  This literary journey hasn’t stopped with his death.  In her grief, she continues to read about other families’ experiences and the disease that took her loved one.

I read them to find out how other people dealt with it.  You know, what I could have maybe done differently?  And what I did right, she said.

This is her list of titles:

Before I Forget by B. Smith and Dan Gasby.

Come Back Early Today, by Marie Marley, Ph.D.

Slow Dancing With a Stranger by Meryl Comer.

The Long Hello by Cathie Barrie.

To Johnny With Love by Dagmar Christine Albert

My Mom, My Hero by Lisa R. Hirsch.

When Breath Becomes Air by Paul Kalanithi.

She also recommended two books that are fiction based on fact:

Inside the O’Briens by Lisa Genova and

Turn of Mind by Alice La Plante.

Those of you who are dealing with Alzheimer’s may recognize certain aspects of your situation as you read.  I hope you find new solutions and humour as well as pathos in these books.

Thanks, Donna, for sharing.

Yours truly,

Margaret Jean.

Caregiver? Caretaker? Part 3.

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.

Caretaker? Caregiver? Part 2

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.