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You are not alone!

You are not alone!

Life can change direction drastically when a family member or close friend is diagnosed with a chronic health condition like Alzheimer’s disease, another form of dementia, multiple sclerosis, or Parkinson’s disease. Your suspicions that something is wrong have been confirmed; now, you have to figure out how to support the person. You may have never had personal experience with any of these conditions. Suddenly, you find yourself going along to doctor’s appointments and feeling as if the doctor is speaking a whole other language. If you’ve never had to be a caregiver before, you probably haven’t learned a very important part of a caregiver’s vocabulary: “I need help.”

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Why I work for the Alzheimer Society

Why I work for the Alzheimer Society

Elizabeth Barrie is a First Link® outreach worker for the Alzheimer Society of Oxford. She shares her personal connection to the disease.

What is your connection to Alzheimer’s disease?

My mom was diagnosed with Alzheimer’s disease when I was parenting three young daughters. I had to juggle the expectations of motherhood with the demands of supporting my parents as they navigated the uncharted waters of dementia.

Never one to complain or dwell on the negative, Mom continued to participate actively in her community, writing for the newspaper, playing the piano at church and helping to lead choirs.  Remaining active, socially and physically, was essential to Mom’s health and well-being throughout her journey.  In spite of the changes in her brain, Mom did all she could to care for her family – and what she couldn’t do, Dad did for her. Their 15-year journey with Alzheimer’s disease was a labour of love for both of them.

What were the initial warning signs that led you to believe your mother’s health was changing?

She began taking notes when she and I would have conversations over the phone.   When I asked her questions she would read from her notebook about the conversations she’d had with other family members rather than respond from memory.

Mom also began repeating stories and had difficulty finding words, which progressed over time.

Soon after her diagnosis, I remember finding Mom trying to open a can of soup using a hammer and nail. She didn’t recognize the manual can-opener in her kitchen drawer.  This was a stark reminder that Mom’s changing brain was going to make even smallest tasks harder to complete, especially in the kitchen.

What support, if any, did you access?

I remember the day I drove to the Alzheimer Society office without an appointment and entered feeling completely overwhelmed and scared. A woman on staff made time for me right away, answering my questions, validating my feelings, and sharing my tears.

I had held it together as long as I could, but when I reached my breaking point, I needed somewhere to turn with someone who would understand and could help.

The Alzheimer Society provided all that I needed and more.  I was sent home with resources to read and share with my family, tips to engage Mom and above all reassurance that we were not alone.

Follow-up calls and opportunities for myself and all the members of my family to access education and support came as needed.  This help proved invaluable over the course of Mom’s journey.

As a family, we learned to live “in the moment” with Mom.  We understood the importance of music, family, laughter and conversation, and we engaged Mom in as many ways as we could, for as long as we could.

When we were lacking information, the Alzheimer Society provided it for us. They shared helpful coping strategies and tips, lending a listening ear at the times when we felt depleted of strength. This was a gift.

Read more stories like Elizabeth’s.

elizabeth-barrieElizabeth Barrie

First Link® outreach worker

Alzheimer Society of Oxford

What is ambiguous loss and grief? / Qu’est-ce que le deuil blanc?

What is ambiguous loss and grief? / Qu’est-ce que le deuil blanc?

If you are living with dementia or supporting someone who is, you may be experiencing a ‘roller coaster’ of emotions.  Some days are so good you tend to forget about the dementia altogether.  Other days, the smallest thing can send you to tears.  Still other days you might feel a nagging sadness that you just can’t shake – even though nothing particularly sad has happened recently.

This ‘roller coaster’ can be related to the ups and downs of feeling grief – yes, a similar kind of grief that we feel when we lose someone dear to us.  But when it comes to dementia, the feelings of sadness, loss and grief can happen over a longer period of time (sometimes years) and while the person with dementia is still alive.

There are different names for this special kind of grief that seems to have no end; you will often hear it referred to as ‘ambiguous loss and grief’ or ‘disenfranchised grief’.  Whatever we call it, grief and dementia often go hand-in-hand.

Some people with dementia experience intense moments of loss and grief as they think about such things as:

  • Will I still be able to enjoy this activity a year from now?
  • Will I ever forget who my grandchildren are?
  • Will there come a day when we can no longer travel together?

Families and friends may also struggle with their own ebb and flow of grief as they realize things like:

“Dad used to be so quick witted.  Now he is struggling more and more just to understand the newspaper.”

“Sophie and I always had such fun together!  Now I don’t even feel she’d follow the story if we went to a movie.”

Some people talk about feeling they are ‘losing the person bit by bit’. Kids, too, experience loss and grief as they realize their parent can’t help them with their homework anymore or their grandparent tends to do embarrassing things in front of their friends.

Ambiguous loss differs from the loss and grief of death because closure is not possible and grief cannot be fully resolved until the person with dementia dies. The person with dementia is present, but not as before. Yet we know that the person with dementia, regardless of their abilities, still maintains a core of self that can be reached at all stages of the disease. It is our challenge to help them to continue to be the best they can be – despite our grief, and theirs.

So what can we do about these feelings so that we can continue to live each day as well as possible?

First, it is important to recognize grief – to stare it in the face and acknowledge it.  By understanding grief, we can begin to ‘normalize it’ and make it feel less scary and overwhelming.

Here are some strategies that might help.  There are more ideas in the online booklet, Ambiguous Loss and Grief in Dementia: A resource for individuals and families

  • Understand this unique type of grief
  • Learn strategies to continue to engage with the person with dementia
  • Join a dedicated dementia grief support group
  • Get help with the double load of caregiving and grieving
  • Learn about different grieving styles
  • Connect with the person as they are today.  Focus on their strengths, their inner core, the essence of who they are
  • Think about who is part of your ‘psychological familyfor additional support
  • Consider use of paradoxical thinking. e.g. “She may forget my name but she knows who I am.”
  • Get help to build bridges to the life you will live when the person is either no longer living or is progressively unable to participate actively in your life

The person with dementia may benefit from:

  • Support in expressing their feelings, perhaps in creative ways like through music or drawing
  • Acknowledgement of the sadness they may be experiencing about their own  losses
  • A focus on their abilities and strengths like story telling or giving warm hugs

A gentleman caring for his wife with dementia said, “The word ‘ambiguous’ helped me understand what was going on. I’m still married to my wife. I love her, but I don’t live with her.  I’ve always been crazy about her and still am. She’s looked after, but it is a huge loss for me. The ambiguity is exactly how I feel.”

Give your local Alzheimer Society a call; they are there to help.

 

Mary_2013Mary Schulz

Director of Information, Support Services and Education

Alzheimer Society of Canada

 

 

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Qu’est-ce que le deuil blanc?

Avoir la maladie d’Alzheimer, ou prendre soin d’une personne qui en est atteinte, nous fait passer par toute une gamme des émotions. Parfois, tout va si bien que nous ne pensons plus du tout à la maladie. À d’autres moments, la plus petite contrariété nous fait fondre en larmes. Souvent, une profonde tristesse nous envahit, même si rien de particulier ne s’est passé récemment, et nous sommes inconsolables.

Cette gamme infinie d’émotions rappelle le sentiment de deuil qui nous assaille lorsque nous perdons quelqu’un qui nous est cher. Mais pour ce qui est de la maladie d’Alzheimer, la tristesse, le chagrin et la douleur persistent dans le temps (parfois pendant des années) alors même que notre proche vit toujours.

Ce sentiment ambigu, profond et persistant de détresse et de souffrance, le deuil blanc, se poursuit indéfiniment et va souvent de pair avec l’Alzheimer et les maladies apparentées.

Les personnes atteintes vivent parfois des moments intenses de chagrin et de deuil lorsqu’ils pensent à l’avenir :

  • Est-ce que je serai toujours capable de pratiquer cette activité dans un an?
  • Est-ce que j’oublierai le nom de mes petits-enfants?
  • Est-ce que le jour viendra où nous ne pourrons plus voyager ensemble?

La famille et les amis éprouvent également toute une gamme d’émotions et de sentiments :

« Papa avait l’esprit tellement vif. Aujourd’hui, il a de plus en plus de difficultés à lire le journal. »

« Nous avions toujours tellement de plaisir Sophie et moi! Maintenant, j’ai l’impression qu’elle ne pourrait plus comprendre un film si nous allions au cinéma. »

On a parfois l’impression de perdre la personne petit à petit. Les enfants aussi éprouvent ce sentiment de deuil lorsqu’ils réalisent que leur père ne peut plus les aider à faire leurs devoirs scolaires, ou que leur grand-mère se comporte parfois bizarrement devant leurs amis.

Le deuil blanc est un type de deuil très différent de ce que nous ressentons lorsqu’un proche meurt. La personne qu’on aime est toujours présente, mais des aspects entiers de sa personnalité ont disparu et le deuil ne peut pas être fait. Pourtant, nous sentons aussi qu’elle reste fondamentalement ce qu’elle a toujours été, à tous les stades de la maladie, indépendamment des capacités qu’elle a perdues. Il faut être à la hauteur des circonstances pour l’aider à donner le meilleur d’elle-même, malgré notre peine et la sienne.

Que pouvons-nous faire pour continuer de vivre le mieux possible malgré ces sentiments ambigus?

Premièrement, il est important de reconnaître ce sentiment de deuil et de le regarder en face. En le comprenant, nous pouvons commencer à le normaliser et à le rendre moins terrifiant et accablant.

Voici quelques stratégies qui pourraient vous aider.  Pour obtenir plus d’idées, nous vous prions de visiter notre site web : http://www.alzheimer.ca/~/media/Files/national/Core-lit-brochures/ambiguous_loss_family_f.ashx

  • Comprendre le caractère unique de ce deuil.
  • Apprendre des stratégies pour poursuivre sa relation avec la personne atteinte.
  • Adhérer à un groupe de soutien pour les personnes aux prises avec le deuil blanc.
  • Faire appel à des services de répit et aller chercher de l’aide pour composer avec ce sentiment de deuil.
  • Comprendre les diverses formes de deuil.
  • Communiquer avec la personne telle qu’elle est aujourd’hui. Se concentrer sur ses points forts, sur son for intérieur, sur l’essence de ce qu’elle est.
  • Aller chercher du soutien supplémentaire auprès de votre « famille psychologique », c’est-à-dire auprès des personnes avec qui vous avez le plus d’affinités.
  • Considérer l’utilisation de la pensée paradoxale, par exemple : « Elle a peut-être oublié mon nom, mais elle sait qui je suis. »
  • Obtenir de l’aide pour jeter des ponts vers l’avenir lorsque votre proche ne sera plus là, ou ne pourra plus du tout participer activement à votre vie.

Il existe différents moyens d’aider la personne atteinte :

  • La soutenir dans l’expression de ses sentiments, peut-être de manière créative, par exemple par la musique ou par le dessin.
  • Reconnaître la tristesse qu’elle éprouve face à ce qui lui arrive.
  • Mettre l’accent sur ses capacités et ses points forts, lui raconter une histoire ou la serrer dans vos bras.

Un aidant déclare au sujet de sa femme atteinte de la maladie d’Alzheimer : « La notion de deuil blanc m’a aidé à comprendre ce qui se passait. Je suis encore marié avec ma femme. Je l’aime, mais je ne vis pas avec elle. Je l’ai toujours adorée et j’ai toujours les mêmes sentiments à son égard. On s’occupe d’elle, et le fait de l’avoir perdue me pèse énormément. Le deuil blanc est très exactement ce que je ressens. »

Votre Société Alzheimer locale est là pour vous aider. Donnez-lui un coup de fil.

 

Mary_2013Mary Schulz

Directrice, Information, services de soutien et éducation

Société Alzheimer du Canada