The Dementia Diary: Awareness is the key

The Dementia Diary: Awareness is the key: January is Alzheimer's awareness month in Canada.  I am aware, I am very aware.  Family history dictates that the women in my family, my...

Awareness is the key

January is Alzheimer's awareness month in Canada.  I am aware, I am very aware.  Family history dictates that the women in my family, my mother and grandmother, tend to develop a form of dementia.  Two years ago I was told that it is very possible that I will also develop it.  Funny, two years ago when I was told that I really wasn't concerned however the next 10 months with my mom and other people with dementia literally put the fear of God into me.  I was a front row witness to the suffering.  I saw the frustration and pain in my mother's eyes.  I felt pain, I felt other caregivers pain because it is an absolutely insidious illness that I would not wish on anyone.

Quite often when I am writing I can't think of the word of want, so I use another word.   Sometimes it happens when I'm in a conversation.  Just yesterday I could not think of the word perceive.  I'm mid sentence and I could not think of the word, the conversation paused and thankfully Nicki new the word.  In all honestly, I do more editing in my writing in the past 6 months than I have ever had to before.  They aren't spelling mistakes or grammatical issues, rather I will type 'get' instead of 'great' or 'cat' instead of 'coat'.  I won't lie, it frightens the hell out of me every time and every time it happens, and it is daily, my first thought is "Shit, it's starting already".

Recently I had a CT scan totally unrelated to my concerns.  However, my thoughts were not about the reason for the CT instead I wanted to know one thing and one thing only, am I showing early signs of dementia.  The doctor I saw was one of the doctors who treated my mom and also gave us the diagnosis. So I came out and asked her point blank "Louise, is there any signs of dementia?".

"No," she paused "not yet".

"Not yet", struck me like a bullet even though I know very well that I am at risk, the words stunned me.  However, the answer could be given to anyone of us.  Sure given my family history, a severe head trauma and a few other factors put me at greater risk but the cold hard facts are that WE ARE ALL AT RISK.  No one is immune to the ravages of dementia.

So, to make you all aware, here are some myths surrounding Alzheimer's.  I'll post other interesting factoids as I find them throughout the month.  Regardless, I'll keep praying, I'll keep praying everyday that my mind stays intact and all I can do really is hope that my prayers are answered.

My CT Scan January 7, 2014.

Myth 1: It’s just a normal part of aging

People used to believe “going senile” was just part of growing old – but symptoms are caused by a disease process. Alzheimer’s disease is a degenerative brain disease involving physical changes to the brain – like the development of amyloid plaques and neurofibrillary tangles and nerve cells losing contact with each other or dying.

The disease is progressive and irreversible — but it isn’t inevitable as we age. In fact, experts say most people don’t develop it.

Myth 2: Memory loss means Alzheimer’s disease

Occasional forgetfulness doesn’t mean disease. Alzheimer’s disease involves more frequent forgetting and not being able to recall those forgotten details later on. Difficulty performing familiar tasks, problems with communication, disorientation, poor judgement and problems with abstract thinking are also hallmarks of the disease.

Sometimes these symptoms stem from a treatable cause like an infection, drug interaction, depression, head injury or another health condition like multiple sclerosis.

It’s also important to remember that Alzheimer’s disease is just one of 70 causes of dementia (an umbrella term for memory loss due to changes in the brain). Not everyone who has dementia has Alzheimer’s – it can also be part of Parkinson’s disease or the result of a stroke, for example.

Myth 3: Your relatives have it, so you’ll develop it too

Genes do play a role in our chances of developing the disease, but only a small number of cases – about five to seven per cent – are an inherited form of the disease known as Familial Alzheimer’s disease (often referred to as “early onset”). While the disease itself is the same as the more common Sporadic Alzheimer’s Disease or “late onset” form, the difference lies in a set of mutated genes that can be passed from one generation to the next. If one of your parents carries the mutation, you have a 50 per cent chance of inheriting it. If you inherit the genes, experts say you’re likely to develop the disease.

What about the sporadic form? If you have a parent or sibling who has Alzheimer’s disease, you have a three times greater risk than someone who doesn’t have a family history. New research suggests that certain genes (such as the apolipoprotein E gene) can influence the development of the disease but experts note genes themselves don’t cause the disease, and people who don’t have the genes can still develop Alzheimer’s disease while people who do can remain disease-free.

Myth 4: Alzheimer’s disease only affects “old people”

True, our risk for Alzheimer’s disease increases as we age: the majority of cases show up after age 60, and the risk for developing the disease doubles every five years after 65. Some sources claim that by age 85 about half of all people have Alzheimer’s disease or a related dementia.

However, Alzheimer’s disease can appear in the 40s and 50s as well, and some rare cases have shown in patients who are even younger. Research suggests Alzheimer’s disease is already in the advanced stages by the time symptoms become evident.

Myth 5: It isn’t fatal

What happens in our brains affects the rest of the body too. In the later stages of the disease, the body’s systems start to shut down which can affect breathing, blood pressure, the skin and the senses. Sufferers may experience increased sleepiness, pain and discomfort and infection or pneumonia can set in.

Alzheimer’s disease and related dementia's are one of the top 10 causes of death in developed countries. In 2007 (the latest year for which data is available), it was the 7th leading cause of death in Canada and ranked 6th in the United States. Alzheimer’s kills more people than kidney disease and infections like influenza.

Myth 6: Alzheimer’s disease is preventable

We hear a lot of advice about keeping our brains healthy, but so far there isn’t a treatment or strategy guaranteed to prevent Alzheimer’s disease. Research into the effectiveness of therapies like vitamins E, B, C and D, gingko biloba, folate and selenium is ongoing but often conflicting.

However, experts report more evidence shows lifestyle strategies can help reduce the risk or delay the onset of Alzheimer’s, such as:

- Eating a healthy diet including fresh fruits and vegetables, fish and nuts.
- Challenging your brain with puzzles, hobbies and learning.
- Keeping your blood pressure, blood sugar and cholesterol levels in check.
- Avoiding brain injuries.
- Staying active socially.
- Exercising regularly.
- Avoiding vices like smoking, drugs and alcohol.

These strategies are also beneficial for cardiovascular health, which may play a role in the development of Alzheimer’s disease.

Myth 7: Aluminium causes Alzheimer’s

While there has been a lot of research into the link between aluminium and Alzheimer’s disease, the only thing researchers can agree on is there isn’t enough evidence to prove aluminium is a cause. Furthermore, researchers haven’t seen a higher incidence of Alzheimer’s disease among people who’ve been exposed to aluminium at their jobs or in cultures that regularly drink tea. (Aluminium can accumulate in the leaves.)

Aspartame, flu shots and silver dental fillings have been suspects as well, but there is no solid evidence to put the blame on them either.

Myth 8: All people who have Alzheimer’s disease become violent and aggressive

While Alzheimer’s disease can cause personality changes, experts note that not everyone becomes aggressive or violent. Other common behaviours can include wandering, restlessness, suspicion and repeating actions.

Coping with memory loss and confusion can be frightening and frustrating for people with Alzheimer’s disease. Care givers and loved ones can help by learning some key strategies: adapting a person’s surroundings, maintaining a consistent routine and learning how to communicate more effectively can help prevent emotional responses.  

Myth 9: People with Alzheimer’s disease are unresponsive to what is going on around them

Symptoms can be deceiving — even though people can’t communicate well and get confused, that doesn’t mean they aren’t aware of what’s going on around them. Emotions and feelings are still very much present even though memory and abilities are changing, warn experts. Everyone needs social connection and belonging, a sense of independence and joy. Even in the late stages of the disease, people respond to touch and find comfort in soothing voices and music.

Myth 10: There’s no hope

Researchers are finding better ways to detect the disease, test new treatments and even develop a vaccine. Experts continue to learn more about Alzheimer’s disease and there are treatments to help manage symptoms and strategies that can improve quality of life. A diagnosis doesn’t mean a sudden loss of independence and health experts note it’s important to focus on what people can do. If you or someone you know is affected, talk to your doctor and reach out to resources in your community.

 

I am trying think about what I would like to say about my mom.  All I have it that I miss her.  People loss a lot of people in their lives, friends,  lovers,  family.  But you only ever lose one mom. My mom gave me  life and I miss her.  That's all I got. I MISS HER...
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The Dementia Diary: Stuffing

The Dementia Diary: Stuffing: I can remember last Thanksgiving very vividly.  It was the start of a journey with my mom.  It was the day that I decided I would be by my m...

Stuffing

I can remember last Thanksgiving very vividly.  It was the start of a journey with my mom.  It was the day that I decided I would be by my mother until her time came. It was the day I realized that mom wasn't going to be around much longer.  It was the day that I started feeding my mother like she was a child.  It was the day the journey started.  It was the beginning of the end, or so I thought.   My own life was in shambles.  I was a 40 something woman now living in the basement of her father's house and my mother was slowly dieing right in front of my eyes.  I was bitter and resentful and I didn't think there was fuck all to be thankful for.   I was wrong.  I was sooooooo wrong as I have so many things to be thankful for.

I am very thankful for friends, old and new.  Coming back home and seeing so many familiar faces brought a happiness back into my life that was very much needed. The phonecalls, the emails, the coffee's at Starbucks and the support of my friends helped me to make it through a very difficult time without completely falling apart.  Thank you to my tribe.  I am also thankful for the many new friends that came into my life, although some very briefly.  We shared a commonality that only the loved ones of a person with dementia know and because of that we bonded very intimately and very quickly.  We shared laughter, we shared  advice, we shared secrets, we shared tears and we shared pain, a lot of pain.  The pain of losing a person to dementia is different from anything else because you lose them twice.  You lose them once to the dementia as the pieces of the person they once were slowly disappear and then you lose them again when their body finally decides to go.  That pain can take a caregiver to very dark and dank places.  Without the love and understanding of the friends I made over the past year I would have gotten lost in that darkness and their light led the way.  Thank you all from the top and the bottom of my heart. 

I am very thankful for family.  My kids have been rock solid through all of this.  I really tried to shield them from the reality but you can't.  I thought they would fall apart when they saw just how sick their grandmother was, but they didn't.  Instead my wonderful kids faced the shit life was giving them with love and compassion.  It was my kids that showed me how my bitterness and hatred of the situation wasn't helping anybody and it wasn't helping mom so I turned it around and life seemed that much better.  The shit still smelled like shit but I didn't have to step in it.   Of course I am thankful for my extended family too who went out of their way to make sure that not only was mom not forgotten but that dad and I weren't either.  A lunch date and many tearful phone calls were had during the past year and every one of them lessened the burden that I was feeling.  I'm thankful for my dad.  When I moved home I expected it to be a nightmare and instead it was a dream come true.  I was fortunate to see facets of my father that I didn't know existed.  I realized just how patient, loving and wise my father is and how very funny he is too.  Most importantly I learned just how strong the roots of my family tree are and how the branches will bend but they will not break.

Finally, I am thankful for the time.  I've spent a third of the time in my life trying to please my mom.  I've spent a third of the time in my life hating my mom.  I've spent another third of the time in my life avoiding my mom.  So, I am today so very thankful that I got to spend 11 months of my life caring for my mom.  That time with my mom helped to heal a lot of pain.  That time together helped me to remember all the good times with my mom and made me literally forget the bad.  That time together  helped me to relive some of the wonderful experiences we shared and create new ones.  That time together helped to even re-write some of the history because mom would go back to moments of her past with me and together we changed the endings.  Most importantly that time together made me realize that she was a wonderful, loving and caring woman and that she loved me and I loved her, I really loved her.

I am allergic to celery.  Yes, it's  98% water but whatever the other 2% is, I'm deathly allergic.  Because of the allergy mom had to modify the traditional turkey stuffing recipe to accomodate me and she did so lovingly.  Besides the pies, mom's stuffing ruled.  Here's the recipe.  Happy Thanksgiving from mom and me.

Ingredients

• 2 tablespoons vegetable oil
• 1 pound spicy pork bulk sausage
• 1 cup diced white onion
• 2 cups diced Macintosh apple
• 2 garlic cloves, minced
• 1 tablespoon chopped fresh parsley
• 2 teaspoons minced fresh sage
• 1 bay leaf

• 8 cups bread cubes
• 1 cup  milk
• 1 cup chicken broth
• 2 tablespoons (1/4 stick) butter, melted
• 3 large eggs, beaten to blend

Preparation

Heat oil in heavy large skillet over medium heat. Add sausage; sauté until cooked through and brown, breaking into pieces with spoon, about 8 minutes. Using slotted spoon, transfer sausage to large bowl. Add  next  ingredients to drippings in skillet. Sauté over medium heat until vegetables are soft, about 5 minutes. Discard bay leaf. Add mixture to sausage. (Can be made 1 day ahead. Cover; chill. Reheat to lukewarm before continuing.)

Preheat oven to 350°F. Butter 13x9x2-inch glass baking dish. Add bread to sausage mixture. Whisk milk, broth, and butter in bowl to blend. Mix into stuffing; season stuffing with salt and pepper. Mix in eggs; transfer to prepared dish. Bake uncovered until cooked through and brown, about 50 minutes. 

The time has come.

Elaine Mary Remesoff (Obrigewitsch) was born on May 14, 1936 on the farm near  Vibank, Saskatchewan.    She grew up on the prairies of Saskatchewan.  Elaine spent her childhood both enduring the hardship and enjoying the bounties of farm life and community.  In 1958 she married James Arthurs and together they had two sons, Douglas and David.  Elaine and Jim lived in both Alberta and Saskatchewan before later divorcing.  Being a single mother, Elaine went back to her roots in Saskatchewan  and returned to school to get a better education.  There she met Peter Remesoff and in 1968 they were married and later that year had their daughter, Lisa.   Eventually Elaine and Peter moved  the family to  Canmore, Alberta where they resided for  over 30 years.   

Elaine enjoyed many things in her life.  She loved to curl, watch baseball and the Saskatchewan Roughriders.  She was a talented seamstress who also enjoying knitting and was well known for her incredible pie making.  Elaine travelled a lot having seen many parts of Europe, South East Asia, Australia and Central America.  She loved her family, she loved her children and she loved doting on her grandchildren.  She retired from Canada Cement Lafarge in 1998 after 25 years of employment and eventually her and Peter left the mountain community they loved, settling in Cochrane, Alberta in 2008.

Elaine was predeceased by her father Jakob Obrigewitsch, step-father Harry Reinhardt and her mother Agnes Reinhardt (Deck)  She was also predeceased by her older  brother Gerald Obrigewitsch, her younger sister Jacqueline Cross (Obrigewitsch) and her nephew  Lyndon Cross.

She is survived by her devoted husband of 45 years, Peter Remesoff , her sons Douglas Arthurs, David (Sandra) Arthurs and daughter Lisa Remesoff as well as her grandchildren Danielle Arthurs, Shayne Arthurs, Dylan Bardwell and Ryley Sadorsky.    Her brothers Eugene Obrigewitsch and Reg (Clara) Reinhardt are also left mourning her as are many  nephews, nieces, grand-nephews, a grand-niece and numerous dear friends in Saskatchewan and Alberta.

A celebration of Elaine’s life will take place at Our Lady of the Rockies Church, 810-7^th Street, Canmore, Alberta on August 12, 2013 at 11:00 am. 

The family asks that in lieu of flowers, donations be made in Elaine’s name to the Bethany Care Centre, Cochrane, Alberta.  Funeral arrangements by Bow Valley Funeral Service, Canmore, Alberta.

 

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