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What’s love got to do with Alzheimer’s? A lot

What’s love got to do with Alzheimer’s? A lot

By Alex Westman

Mr. and Mrs. Alex and Donna Westman

My wife Donna and I met when we were just teenagers—she was 18, I was 16. Despite our youth, we understood early on that we had a deep connection. It was an amazing thing, really, and still is. There was magic in her and she saw something in me. I had a reputation as a bit of a scrapper, but she soon took care of that.

These days, I’m almost respectable. I’m a three-term municipal councillor in the Township of Lucan Biddulph, Ontario, and a 30-year veteran of the fire department. She made me who I am, and all these years later, Donna is still the love of my life.

Why am I telling you this? Because I want you to know that the love we share is the armour we wear when things get tough. And in 2009, things got really tough.

Mr. and Mrs. Alex and Donna Westman

That was the year she was diagnosed with Alzheimer’s disease. She was 47. I remember sitting beside her in the chair in the doctor’s office. I looked at her, and she looked at me, and I said, “we’ll get through this together.” And we have.

We’ve had help, of course. Donna’s sister Gale and our daughter Sara-Beth have been nothing short of amazing; their love for Donna shines through in everything they do for her.

My point, as I’m sure you are beginning to see, is that you can’t do this without love. This disease is big. It has teeth, and horns and claws. If we didn’t have love, this disease would destroy us both.

Now I don’t want you to think I live in some fantasy land. We’ve had our ups and downs. We’ve gone to marriage counselling. There were times we didn’t particularly like each other. But we always loved each other and we always knew we wanted to make it work.

Mr. and Mrs. Alex and Donna Westman

I remember vividly the spring following Donna’s diagnosis when we planted forget-me-not flowers in her garden. The garden has always been a special place where she tended to each plant as if it were the only one. The year before, we had planted daffodils for my parents who died of cancer. This spring, we wanted forget-me-nots for Donna.

When we finished, we stood back to admire our work. She put her head on my shoulder and I said, “It’s OK, sweetie. I’ll remember our life together for both of us.”

Mr. and Mrs. Alex and Donna Westman

Power of Attorney: Empowering you to help your loved one

Power of Attorney: Empowering you to help your loved one

Follow us, as Elizabeth Murray tells the moving story of her mother’s battle with dementia. In this blog series, Murray explores every part of the experience of caring for someone with dementia, sharing her memories and insights from it all. Her words serve as a great reminder of the many ways dementia affects our lives, and the lives of our loved ones.

Moving my mother into a nursing home was a difficult decision. Executing that decision was even more difficult.

My mother had always been fiercely independent. Even after my father died and she lived alone, she was determined to do everything for herself.

My mother knew that if she were to become mentally incapable, someone else would have to make decisions about her health care, medical treatment and living arrangements. We had discussed the benefits of a Power of Attorney for Personal Care and she acknowledged that I was the person she would want to have make those decisions if she couldn’t do so herself. The problem was that she really believed she would always be able to determine her own destiny; that she would always be able to live alone and take care of herself.

Although my husband and I were both lawyers and we knew the consequences of our inaction, neither of us were inclined to push the issue and persuade her to sign the document.

When my mother was diagnosed with dementia, she wasn’t prepared to admit that she needed assistance of any kind and she certainly wasn’t prepared to move out of her house voluntarily.

When my mother was no longer safe living on her own, I didn’t have the authority to move her into a nursing home or to ensure that she received appropriate care. Before I could make any decisions on my mother’s behalf, I had to apply to court and ask to be appointed as her committee. The process was cumbersome and time-consuming. It added to the stress of an already stressful situation.

Contemplating a time when a Power of Attorney for Personal Health Care is required is not easy, but the decision is an important one to make. Don’t make the same mistake I did. It’s better to have a plan and not need it than to need a plan and not have it.

What is a Power of Attorney?

A Power of Attorney is a legal document that gives someone else the power to act on your behalf. This person is called your “attorney,” though he or she is not usually a lawyer. Powers of Attorney for Personal Care deal with the following matters:

• The appointment of an attorney and the appointment of an alternate attorney if the first named attorney is unable or unwilling to make a decision or is not readily available to make a decision;
• The types of decisions an attorney is authorized to make regarding your care;
• Medical directives with respect to treatment;
• Provisions for payment of compensation to the attorney for the decision-making; and
• Provisions to protect the attorney from decisions that might be unpopular with some members of a family.

Depending on where in Canada you live, a Power of Attorney for Personal Care may be called a power of attorney, a personal or health directive, or a representation agreement. Sometimes, the same document can deal with personal care issues as well as financial matters. A committee may also be called a guardian.

At the Alzheimer Society of Ontario, you can find many resources to help you prepare for the future at www.alzsuperhero.ca

 

Written by:

Writer Elizabeth Murray
Elizabeth Murray
Retired lawyer and the author of Holding on to Mamie:  My Mother, Dementia and Me.
For more information about Elizabeth and her story visit www.holdingontomamie.ca.

Celebrating Mother’s Day when Mom has dementia

Celebrating Mother’s Day when Mom has dementia

With Mother’s Day just around the corner, the crunch is on to find that perfect gift to show your mom just how much she means to you. But what if your mom has dementia? Here are a few simple, engaging ways to show your mom how much you care—on Mother’s Day or any other day of the year.

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Living well…right to the end

Living well…right to the end

May 7 – 13, 2017 is National Hospice Palliative Care Week. Mary Schulz, Director of Education at the Alzheimer Society of Canada discusses some of the misconceptions about palliative care and why it’s important to have conversations about end-of-life.

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Driving with Dementia

Driving with Dementia

Follow us, as Elizabeth Murray tells the moving story of her mother’s battle with dementia. In this blog series, Murray explores every part of the experience of caring for someone with dementia, sharing her memories and insights from it all. Her words serve as a great reminder of the many ways dementia affects our lives, and the lives of our loved ones.”

Driving had always been an important part of my mother’s life. She loved to tell stories about her adventures as a young woman chauffeuring friends from her home in Campbellford to Peterborough, Ontario to watch the Petes play hockey, or taking a carload of women to Buffalo, New York, to shop.

After she was married, my father’s poor eyesight meant that my mother was the main driver in the household and her ability to drive assumed an even greater significance.

My mother was devastated when her doctor notified the Department of Motor Vehicles that she had dementia.  After her driver’s license was suspended, she refused to attend social gatherings and resented that she needed me to take her grocery shopping or to the drugstore.  Ordinary tasks became an ordeal for both of us. She soon became obsessed with the notion that her doctor had acted in bad faith by reporting her illness and she was determined to have her license reinstated.

One day, she told me that she would be able to drive again if she passed a standard road test. I knew that information wasn’t accurate but I agreed to take her to a Driver Licensing office for the test.

When we arrived, I sat at the back of the room and waited while my mother approached the front counter.  A clerk typed information into a computer and then gently shook her head.  She explained that there was a detailed process my mother would have to follow if she wanted to get her driver’s license back.

“But the doctor was just acting out of spite,” my mother protested.

By the next day, my mother was furious with me. According to her, just as the clerk was about to return her driver’s license, I held up a sign declaring that she had dementia. The clerk saw the sign and immediately withdrew the license. I was stunned.

At the time, I didn’t understand that driving a vehicle meant more to my mother than a way to maintain her independence. The ability to drive was an integral part of her identity and losing her license was another way that dementia was affecting the life she had long known.

People with dementia should be allowed to drive for as long as possible but when their ability is impeded and they pose a risk to themselves or others their license must be suspended. Contact your local Alzheimer Society to learn how you can support your loved one through this significant life change and help them stay connected with their community.

Written by:

Writer Elizabeth Murray
Elizabeth Murray
Retired lawyer and the author of Holding on to Mamie:  My Mother, Dementia and Me.
For more information about Elizabeth and her story visit www.holdingontomamie.ca.

Staying Connected and Living With Dementia

Staying Connected and Living With Dementia

Follow us, as Elizabeth Murray tells the moving story of her mother’s battle with dementia. In this blog series, Murray explores every part of the experience of caring for someone with dementia, sharing her memories and insights from it all. Her words serve as a great reminder of the many ways dementia affects our lives, and the lives of our loved ones.

My mother was embarrassed when she was diagnosed with dementia.  Rather than tell her friends about her illness, she stopped meeting them for lunch or coffee and declined their invitations to concerts and other gatherings. As her disease progressed, she became angry and paranoid. She withdrew from the church group that she had belonged to for over thirty years and refused to attend my son’s hockey games, school concerts and swimming lessons as she had always done.

My friend’s mother, Mrs. McEwan, was also diagnosed with dementia but she wasn’t embarrassed by her diagnosis nor did her symptoms include anger and paranoia. With the help of her friends, Mrs. McEwan continued to attend her book club and ladies auxiliary even when she was no longer able to fully participate in the meetings. She and her husband went to the symphony and the ballet and they joined organized tours to avoid the potential confusion of independent travel.

Over time, her memory gradually declined, until she was dependent on others to help her complete simple tasks. Despite this, she was always cheerful and she accepted her disease and the limitations it imposed with grace.

My mother and Mrs. McEwan had dramatically different experiences when they were living with dementia. Mrs. McEwan’s psychological well-being was fostered by staying connected with her community and participating in activities that she had always enjoyed. She had a positive attitude about her life, despite her limitations.  My mother resented her illness. She cut herself off from her friends and family, and felt isolated, lonely and depressed.

We can all play a role in reducing the stigma of dementia and making the lives of people who have the disease as rich as Mrs. McEwan’s. Educating ourselves about the symptoms and learning how to offer appropriate assistance will help people with dementia feel supported in our communities.  By fostering environments of inclusion in organizations, clubs and faith groups, as well as in common spaces like the library, coffee shop or grocery store, we can create environments that encourage their independence.

Together, we can work to create communities that are dementia-friendly and help everyone who is diagnosed live the quality of life they deserve. To learn more about how you can help contribute to a dementia-friendly community, contact your local Alzheimer Society.

Written by:

Writer Elizabeth Murray
Elizabeth Murray
Retired lawyer and the author of Holding on to Mamie:  My Mother, Dementia and Me.
For more information about Elizabeth and her story visit www.holdingontomamie.ca.

Is it time to move to long-term care?

Is it time to move to long-term care?

You survived the holidays and you’re now getting back into your regular routine. For many people, the holidays are a time to get together with friends and relatives that you haven’t seen in a while. As joyful as these gatherings can be, they can also bring new worries. You may have noticed that your father seems more forgetful.  Perhaps your aunt’s dementia seems to be getting worse.  Or, a dear friend may have seemed frailer than you remembered.

We try to care for relatives and friends in our own homes for as long as possible.  But when a person has dementia, this can be especially challenging. Even families who are well resourced and living close to each other often struggle to support someone who needs a lot of care at home until the end of life.

As difficult as it is, moving to a long-term care home is more the norm than the exception for families of someone with dementia. Research shows that 57% of seniors living in a residential care home have Alzheimer’s disease and/or another form of dementia. And, 70% of people with dementia will eventually die in a nursing home.

At the Alzheimer Society, people who have dementia often tell us they worry about someday moving into long-term care.  Their families tell us that it can be the hardest decision they’ll ever make:  “How will I know it is time?” “What about the promises we made to care for each other until the end?”  “How do I choose a home?” “How much will it cost?” “Will my partner get the care she needs?”

That’s why the Alzheimer Society has created a new series of checklists to help families know what to ask and look for when choosing a long-term care home, and how to adjust to the transition. These come in four easy-to-use brochures with lots of practical tips:

  • Considering the move to a long-term care home
  • Preparing for a move
  • Handling moving day, and
  • Adjusting after a move

You can download these free resources in English at www.alzheimer.ca/longtermcare and in French at www.alzheimer.ca/soinsdelongueduree from the Alzheimer Society of Canada’s website.

You can also get printed copies from your local Alzheimer Society. To find the Alzheimer Society closest to you, please visit: www.alzheimer.ca/en/provincial-office-directory or call toll free: 1-800-616-8816.

A Family Affair

A Family Affair

Follow us, as Elizabeth Murray tells the moving story of her mother’s battle with dementia. In this blog series, Murray explores every part of the experience of caring for someone with dementia, sharing her memories and insights from it all. Her words serve as a great reminder of the many ways dementia affects our lives, and the lives of our loved ones.”

When my son, Davis, was young he used to say that he loved Mommy best, Grandma second and Daddy third. My mother returned his feelings tenfold.

Her devotion to him only increased as he grew from an infant to a toddler to a boy. Her house was transformed into Davis’ second home, complete with his own room, toys, books and clothes. She was constantly thinking up new activities for them to enjoy together – a large cardboard box was turned into their clubhouse and the basement rec room became an imaginary hockey rink.

After Davis started school, my mother attended hockey games, music lessons, choir recitals, and even some parent-teacher interviews. No matter how wonderful he was through the rose-coloured glasses of his parents, Davis was even more wonderful through my mother’s ruby-tinted lenses.

When Davis was in Grade 3, my mother forgot to attend Grandparents Day at his school – an event that they had both long anticipated. Davis was heartbroken, but my mother was contrite and he readily forgave her. The incident should have raised a large red flag but I chose to ignore the possibility of a larger issue.

Two years later, my mother was diagnosed with dementia.

As her disease progressed, she refused to come to Davis’ activities. She declined my invitations to visit my son at our house, as well as my offers to bring him to hers. Davis didn’t see my mother for months at a time and he missed her terribly.

“Why are you fighting with Grandma?” he often asked, thinking that their lack of contact might have had something to do with me.

In retrospect, I didn’t properly educate Davis about dementia or its symptoms. I tried to protect him from my mother’s drastic changes in behavior, but in doing so, I didn’t equip him to understand the progression of her disease.

Dementia affects families – not just the person who is diagnosed with the disease.  It is important that children and young adults be informed so they can better understand what is happening to their loved one.  With the help of your local Alzheimer Society you can find the resources you need.

Contact a local Alzheimer Society near you to learn more.

Written by:

Writer Elizabeth Murray
Elizabeth Murray
Retired lawyer and the author of Holding on to Mamie:  My Mother, Dementia and Me.
For more information about Elizabeth and her story visit www.holdingontomamie.ca.

‘We have so much to learn from our grandparents’: A teen’s perspective on Alzheimer’s

‘We have so much to learn from our grandparents’: A teen’s perspective on Alzheimer’s

Marilyn Lemay loved the outdoors and would spend every waking moment there. Inherently creative, she crafted, embroidered, quilted and painted everything in sight. If you stand still for more than a moment, her 17-year-old granddaughter Deborah jokes, Marilyn just might paint you.

Some of that changed eight years ago, when Marilyn was diagnosed with Alzheimer’s disease. Deborah’s grandfather Ron moved from their beloved Elliot Lake home to be closer to Deborah’s mother and family. Managing Marilyn’s care himself wasn’t an option. He knew he would need to rely on a close family network.

Marilyn Lemay
Marilyn and Ron Lemay

Deborah loves being closer to her grandmother. She still goes to her with questions about nature and for advice about life. While Marilyn’s memory isn’t what it used to be, she still has a wealth of knowledge to share. And the two of them have joined an inter-generational choir started by the Alzheimer Society London and Middlesex.

“About 15 to 20 high school students get together with seniors living with Alzheimer’s disease and we sing old, war-time songs,” says Deborah. Marilyn loves this choir. It reminds her of her childhood when her mother and aunts would sing and dance in her home.

Deborah loves hanging out with her grandmother, whether they’re walking, having tea parties, or watching episodes of I Love Lucy. There’s so much hope, wisdom, and joy in her grandmother, and Deborah wishes more young people could see that. The chance to connect across generations, to learn from each other and spend valuable time together, is really important.

When Deborah describes her grandparents, her voice lights up: her grandfather is still so in love with her grandmother, even though they met at 13 (63 years ago!). Ron takes Marilyn out on dates, will dance with her whenever music comes on, and the two of them tease each other still. Marilyn is still Marilyn, in other words, and she still lives with deep joy.

Family support systems are an integral part of living with Alzheimer’s and other dementias. And those systems themselves need support with resources, groups, and hope for a cure. Please donate to the Alzheimer Society, so that families like Deborah’s have more time to walk, and sing and laugh. Because it’s not just their disease. It’s ours too. #InItforAlz

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NOUS AVONS TELLEMENT DE CHOSES À APPRENDRE DE NOS GRANDS-PARENTS : PERSPECTIVE D’UNE ADO SUR L’ALZHEIMER

deborah-dravis
Marilyn Lemay adorait la vie en plein air et passait le plus clair de son temps à l’extérieur. D’une nature créative, elle faisait de l’artisanat, de la broderie, des courtepointes et peignait tout ce qu’elle voyait. Si vous restiez juste un moment sans bouger, elle vous prenait comme modèle pour peindre, raconte en riant sa petite-fille Deborah, 17 ans.

Il y a huit ans, la maladie d’Alzheimer a été diagnostiquée à Marilyn et les choses ont changé. Les grands-parents de Deborah ont quitté leur domicile du lac Elliot, qu’ils aimaient tant, pour être plus près de la mère de Deborah et de la famille. Le grand-père ne pouvait prendre soin de Marylin par lui-même et il savait qu’il pouvait compter sur le réseau tissé serré de ses proches.

Deborah adore être à proximité de sa grand-mère. Elle lui pose plein de questions sur la nature et lui demande des conseils de vie. Même si la mémoire de Marilyn n’est plus ce qu’elle était, elle possède toujours de précieuses connaissances à transmettre. Deborah et sa grand-mère font maintenant partie d’une chorale intergénérationnelle mise sur pied par la Société Alzheimer de London et Middlesex.

« Environ 15 à 20 élèves du secondaire se réunissent avec les personnes âgées atteintes de la maladie d’Alzheimer et nous chantons de vieilles chansons du temps de la guerre », poursuit Deborah. Marilyn adore faire partie de ce chœur. Cela lui rappelle son enfance lorsque sa mère et ses tantes chantaient et dansaient à la maison.

Deborah aime beaucoup passer du temps avec sa grand-mère, que ce soit pour faire une promenade, prendre le thé ou regarder des épisodes de « I Love Lucy ». Sa grand-mère est tellement pleine d’espoir, de sagesse et de joie, et Deborah souhaiterait que plus de jeunes puissent profiter de son expérience de vie. La possibilité d’établir des liens entre les générations, d’apprendre les uns des autres et de passer de précieux moments ensemble est vraiment importante.

Lorsque Deborah décrit ses grands-parents, sa voix s’illumine : son grand-père est toujours amoureux de sa grand-mère, même s’ils se sont rencontrés à l’âge de 13 ans (il y a 63 ans de cela!). Il invite Marilyn à sortir, danse avec elle au son de la musique, et les deux adorent toujours se taquiner. En d’autres mots, Marilyn est toujours Marilyn, et elle continue de vivre le cœur rempli de joie.

Le réseau de soutien familial fait partie intégrante de la vie avec la maladie d’Alzheimer ou avec une autre maladie cognitive. Mais il faut appuyer ce réseau avec des ressources, des groupes d’entraide et l’espoir de guérison. Pour aider les familles comme celle de Deborah à disposer de plus de temps pour faire des promenades, chanter et rire, nous vous invitons à faire un don à la Société Alzheimer. Parce que ces maladies ne concernent pas seulement les personnes atteintes, elles nous concernent tous. #TousContreAlz.