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Life with young onset dementia: What you need to know

Life with young onset dementia: What you need to know

What comes to mind when you think of a person with dementia? If you’re like most people, you picture an elderly person in the later stages of the disease.

But here’s the thing: dementia doesn’t just happen to older people. While age is still the biggest risk factor, people in their 50s, 40s and even 30s can also develop dementia.

We call this young onset dementia and it accounts for about 2-8% of all dementia cases. Right now, 16,000 Canadians under the age of 65 have dementia. A dementia diagnosis is difficult for anyone, but it’s especially challenging for people in their 40s or 50s.

Faye Forbes and Mary Beth Wighton

Faye Forbes (left) and Mary Beth Wighton (right) are both living with young onset dementia. Faye was diagnosed with Alzheimer’s disease at the age of 58 and Mary Beth was diagnosed with probable frontotemporal dementia at age 45.

That’s what we recently learned from Mary Beth Wighton and Faye Forbes, who shared their experiences of living with young onset dementia during a webinar co-hosted by the Alzheimer Society of Canada, brainXchange and the Canadian Consortium on Neurodegeneration in Aging (CCNA).

Here are some of the biggest takeaways:

It’s a long road to diagnosis…but it’s worth it in the end

Diagnosing dementia can be a long and complicated process. For younger people, it’s even more complicated and frustrating. Medical professionals are often reluctant to diagnose dementia in someone so young, and it’s common for people with young onset dementia to be misdiagnosed with other conditions. In fact, Mary Beth and Faye were both initially diagnosed with depression.

“(The challenge) with young onset is that dementia is not something that they think about initially. If you’re a woman, the first thing they think about is menopause and depression and anxiety and panic and sleep disorders and all those kinds of things.” – Faye Forbes

“I had 12 different diagnoses before being told that I had probable frontotemporal (dementia)…they included: PTSD, major depression, forgetfulness, no short-term memory impairment, OCD, panic attacks, conversion disorder (what that means is that it’s all made up in my head). I was told that I was over-reporting memory complaints, I had frontal lobe problems, I had a pituitary cyst, I had REM sleep behaviour disorder, and ultimately that then resulted in a diagnosis of probable frontotemporal dementia.” – Mary Beth Wighton

Still, both women felt that getting a diagnosis was well worth it in the end:

“Once you have that diagnosis, it’s something that you can grab onto. There’s something there that you can fight against. That’s the way I looked at it and I wasn’t going to let it get me down. I wasn’t going to just sit there and roll over and let things happen (…) And I still look at things like that today.” – Faye Forbes

“When I think about that diagnosis, in one way, it was a really good thing, because then I could move forward with my life…As challenging as that looked, we could do it.” – Mary Beth Wighton

It’s an uphill battle to overcome stigma…but supportive family and friends make all the difference

People with dementia often feel excluded or treated differently because of their condition. For younger people with dementia in particular, there’s a tendency for others to dismiss the condition as a mental illness, or to simply not believe it because of the perception that dementia is just a disease of the “old.”

“I had all those years of people telling me I was messed up and it was all in my head, and…it was very, very hard on my family, because they were being told by other people, ‘she’s lazy,’ and ‘why don’t you leave her,’ and ‘she’s just nothing but problems,’ and so thankfully my partner and my daughter resisted all that and recognized that it was truly an issue.” – Mary Beth Wighton

We know that many people with dementia go on to live very fulfilling lives for quite some time, but even health-care professionals seem to offer little hope or support for life after diagnosis:

“(The neurologist) just looked at me and said, ‘You have dementia. You have Alzheimer’s. In five years, you’ll be in a nursing home.’ It was not a positive experience at all.” – Faye Forbes

“(My partner Dawn) said, ‘Oh, this is great, we have a diagnosis, what do we do now? Is there a pill, or…?’ And this is when the doctor said: ‘No, there’s no pill, there’s nothing that we can do at all,’ and you’ll have to basically ‘go home, get your affairs in order because you will die from this.’” – Mary Beth Wighton

Mary Beth turned to the internet for more information. There too, stigma was prevalent:

“(After diagnosis) I got home and I started to do all this research…again, it was all the doom and gloom and stigma and, ‘You’re not going to be able to do this,’ and ‘I’d be sexually assaulting people’…these were the things that were coming at me.” – Mary Beth Wighton

In spite of these challenges, both women have embraced living positively with dementia, bashing stereotypes and misconceptions along the way:

“I had started going back to school and studying for ordained ministry prior to all my symptoms starting. And I continued that…I was bound determined that I was going to achieve that goal regardless. And I did…I’m part of a team ministry in my parish and I love doing it.” – Faye Forbes

“I’m a fighter and I’m very stubborn… I just thought, ‘No, I can get around this, I can beat this, I can do something.’… (So) I started doing a lot of advocacy work. Over the last two years in particular, I’ve seen the ability of what happens when people (living with dementia) who are empowered as individuals join forces (…) to push things like policy forward.” – Mary Beth Wighton

[As part of her advocacy efforts, Mary Beth co-founded the Ontario Dementia Advisory Group (ODAG), a group composed of people living with dementia who work to influence policies, practices and people on issues that affect their lives. Learn more about ODAG at odag.ca.]

There’s a huge gap in services and supports

“I unfortunately ran into that brick wall where I was ineligible for just about everything because of my age.” – Faye Forbes

People with young onset dementia are often still working at the time of diagnosis, are physically fit, and may have dependent children or parents at home. They likely have major financial commitments like a mortgage or student loan. Yet, most social programs and services are designed for older people with dementia. They may not be of interest or the person may not feel comfortable in a seniors’ program. They might even be ineligible to join because of their age!

“I ran into a problem getting in to see the gerontologist because I wasn’t old enough to be part of the geriatric clinic.” – Faye Forbes

“I was too young to join (programs) because I was still in my 40s.” – Mary Beth Wighton

Faye and Mary Beth also describe the lack of a supportive health-care team.

“We know when someone gets a diagnosis for a different disease, like cancer, (…) a team of support will surround that person, like for instance a dietician, oncologist, spiritual advisor, financial advisor, etc. What happens when you get diagnosed with dementia in Canada? That does NOT happen. We are unlike any disease. We, for the most part, are literally told to just go home and die.” – Mary Beth Wighton

But there are many services that could be helpful for a person with young onset dementia that one might not even consider.

“One of the things that is important for a person with dementia is our diet (…) And yet I don’t know anyone (with dementia) who has access to a dietitian. That’s not part of our diagnosis process (…) Other things are occupational therapists (to help adapt your home to changing abilities) (…) Physiotherapist, for instance, is really important. People begin to, depending on the type of dementia, it could be more of a struggle for them to walk or to speak or to find those words. How come we don’t have a speech pathologist with us?” – Mary Beth Wighton

And let’s not forget about the family members.

“For my family, there wasn’t a lot of support. Through the Alzheimer Society my partner does have a social worker, but other than that, nothing.” – Mary Beth Wighton

Many are forced to give up working in their prime earning years

Many people with young onset dementia are still working when they’re diagnosed. Some may be able to continue working by modifying their job. Others will have to stop working immediately, which comes with major financial, social and psychological implications.

“At the age of 45, most people are looking to be at the top of their career or starting to head at the top of their career and get into that high income earning, and for me I had to take a long-term leave from my employment, and that then turned into having to leave my job.” – Mary Beth Wighton

“(At work) I really enjoyed interacting with people…I worked in a large office so I was constantly with people all day long. To stop that left a big void in my life.” – Faye Forbes

It’s a major financial blow

The financial repercussions of living with young onset dementia are very difficult. Eventually, a person has quit their job and may not be eligible for financial supports.

“There was definitely a drastic cut in our finances, I was fortunate to have private disability that we (still) get today, and I also get CPP as well…I applied for Canada Pension Plan even though I’m only 50 years old.” – Mary Beth Wighton

For Faye, being a stay-at-home mom made things especially hard:

“I was a stay-at-home mom for most of the years that my children were growing up, and when I did go back to work and then had to leave work, it was about three and a half years that I had worked, and when I applied for Canada Pension, in black and white, in the very fine, fine print, it says you have to work four out of the last six years. So I was ineligible for anything like that.” – Faye Forbes

Living on a disability pension can cut a person’s earning capacity forcing a person to make some tough decisions. Both Mary Beth and Faye had to sell their family homes.

“You start to make decisions…so we made decisions, for instance where we lived, so we decided to sell our house, we just started to think differently…‘how can we live without the stress of finances’. And so we were luckily able to do that and I think we’re in good shape. But, you know, it definitely hasn’t been easy.” – Mary Beth Wighton

Additional expenses like drug costs and fees for support services also come into play.

“When we’re talking about other support services like dieticians, physiotherapists, psychologists, social workers…depending on how (well) your health care system in your particular province is working…you might have to pay for those services. (But) because you’re on a financial restraint to start with, you can’t afford that.” – Faye Forbes


Fortunately, both Faye and Mary Beth have learned to overcome these challenges and live full lives with dementia. They offer the following advice for anyone diagnosed with young onset dementia:

  • Connect with your local Alzheimer Society.
  • Explore all of your financial support options. Talk to a financial advisor to find out what these are and how best to extend those options over a long period of time.
  • Consult a lawyer to get your legal affairs in order. How do you want to be cared for when you can’t care for yourself? What are your wishes? Set up Powers of Attorney so that financial and personal care decisions are made by someone that you trust when you’re no longer able to make them yourself.
  • Find out about work and government benefits.
  • Explore local, provincial, federal and online support programs.

“Just know that if you do have a diagnosis of dementia, you can live well. You can do it. That’s the main message.” – Mary Beth Wighton

Above: Faye Forbes, Lori Michaud (webinar contributor) and Mary Beth Wighton are living life to the fullest with their families, despite all being diagnosed with young onset dementia.


For more information, please see our page on Young onset dementia.

P.S.: If you have the time, we strongly encourage you to listen to the webinar and hear what Faye and Mary Beth have to say firsthand.

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

Racing for memories

Racing for memories

Recently, my family has joined the unfortunate ranks of those who have been impacted by Alzheimer’s disease. My mom started showing early signs of the disease a few years ago, and it has slowly and stubbornly progressed ever since. The toll that Alzheimer’s is taking on my mom is obvious and devastating. Less obvious, but just as significant, is the impact it is having on my dad. As my mom’s primary caregiver, it’s been said that my dad must ride the world’s tallest, fastest and scariest emotional roller coaster each and every day. Sadly, in my observation, this is absolutely true.

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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.

Power of Attorney: Planning for the future

Power of Attorney: Planning for the future

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.

Two months before she was diagnosed with dementia, my mother and I were reviewing her bankbooks at her kitchen table.

She had received a letter from her financial advisor informing her about something that had occurred with one of her Registered Retirement Investment Funds. Her understanding was that one of the semi-annual payments she ordinarily received had been withheld and that any request she made for the money would be denied. A telephone conversation with her advisor had left her frustrated and confused.

She was relieved when I offered to talk to him on her behalf. He was even more relieved to accept my call.

He told me that the regular payments from my mother’s RRIFs had been made as usual. The issue was that she hadn’t cashed a cheque for a capital payment that she had also requested. After six months, the cheque had been cancelled and the money had been deposited into her account. Further steps had to be taken to ensure that she didn’t pay income tax on the money she hadn’t received. My mother didn’t understand the problem and she wasn’t prepared to give the financial advisor the instructions he needed to solve it.

Unfortunately, my mother had never signed a Power of Attorney for Property. As a result, I didn’t legally have the authority to tell her financial advisor to take the required action, even though it was obviously in her best interests.

A Power of Attorney for Property is a legal document that gives someone else the power to manage your money and property on your behalf. A Power of Attorney for Personal Care is a legal gives someone the power to manage medical and personal care decisions. It can specifically provide that the person(s) you appoint maintains their power if, later in life, you are unable to make important decisions by yourself.

My mother had never wanted to think about a time when she would need help to manage her financial affairs. While it is a difficult decision to make, by choosing your Powers of Attorney early in life, you can rest easy feeling prepared for the future.

It is especially important that someone with dementia has Powers of Attorney to help make decisions when they are unable to do so. 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.

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.

Missing the Signs

Missing the Signs

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.”

25,000 Canadians are diagnosed with dementia each year yet families often dismiss its symptoms as part of the natural process of aging.

My mother began showing signs of dementia six years before she was diagnosed but the disease crept up on her, hiding behind normal behaviour.  She had always been a little suspicious, slow to acknowledge her flaws. And gradually those traits became more pronounced.

“Why do you want to know?” she would reply to questions about where she had been or what she had been doing.

“Everybody forgets things sometimes,” was her usual response to an unusual memory lapse.

In those years, I was battling cancer.  I didn’t want to contemplate the possibility that my mother might be facing her own difficult battle.

After her diagnosis, I felt overwhelmingly guilty for not recognizing her disease sooner.  I remembered the times I had been impatient with my mother’s strange ideas; the hurt in her eyes when I was frustrated with her forgetfulness. I berated myself for my lack of empathy.

When my mother forgot to attend Grandparents Day at my son’s school – an annual event they both cherished – I had been furious. All I could think about were the tears that were surely rolling down my son’s cheeks when she failed to arrive.  I didn’t consider how she must have felt when I pointed out her mistake.

Preoccupation with my own health was my excuse for not confronting my mother’s disease but everyone has something in their life that makes it easy to miss the signs that a loved one might have dementia.

I’ve learned to forgive myself for my sometimes-willful blindness to my mother’s symptoms but perhaps if I had been better informed about dementia some of the heartache my mother and I endured could have been avoided.

Alzheimer Societies provide valuable support to families in need but sharing our experiences with the disease can also help to raise awareness – and may make someone else’s journey a little easier. For information and resources on Alzheimer’s disease and dementia, you can visit the Alzheimer Society of Ontario’s website.

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.

Forgetting an Unforgettable Recipe: Mamie’s Butterscotch Raisin Cookies

Forgetting an Unforgettable Recipe: Mamie’s Butterscotch Raisin Cookies

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 I was growing up, my mother’s raisin cookies were a family favourite and making them was a regular Saturday afternoon mother-daughter event.

Instead of adding whole raisins to the butterscotch-flavoured dough, my mother used an old-fashioned meat grinder to mince the fruit. I would turn the handle on the grinder as she fed raisins into the mouth of the machine.  We would take turns stirring the thick batter and sing Patty cake, patty cake, baker’s man, as we patted the dough into a log.  When the cookies were in the oven, we would sit at the kitchen table and sip milky tea while we waited for the timer to chime.

Shortly before my mother was diagnosed with dementia, I asked her for the cookie recipe.  Her forehead wrinkled.

“I don’t know what you’re talking about, Elizabeth,” my mother snapped when I described the cookies, and how we used to make them, for the third time.

I was surprised and hurt that my mother didn’t have any recollection of the special times we had shared baking raisin cookies.  Although I dismissed her lapse of memory as “nothing to worry about”, the incident lingered at the back of my mind.

Sometime later, my mother’s geriatric clinician explained that forgetting the details of a significant event is part of the normal aging process, but forgetting the event ever happened is likely a symptom of something more serious.  I finally realized that my mother’s failure to remember our baking sessions was a symptom of her disease and not a sign that she hadn’t enjoyed our time together.

My mother’s loss of memory often left me confused and frustrated.  Looking back on my experience, I know that I would have been better equipped to deal with her symptoms if I had been familiar with the differences between age-associated memory impairment and dementia.

Not every memory lapse is a cause for concern but if you have questions about a loved one’s memory, you should consult your local Alzheimer Society for more information about Alzheimer’s disease and dementia.

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.