Live in their reality

Last weekend I went to a Death Cafe gathering in my town and someone said this really profound thing that I haven't been able to stop thinking about. 

First off, in case you were wondering what the Death Cafe is, their stated objective is 'to increase awareness of death with a view to helping people make the most of their (finite) lives'.

During the meeting, I brought up my mother's condition and how it is really difficult to watch her slip away and be unable to turn to her as a mother. In response, the Facilitator of the Death Cafe introduced the following concept:

Live in their reality
— Stephen Garrett

 

 

When it comes to caring for someone with dementia, it is important to understand that they are no longer living in your world. They are experiencing social cognitive, functional and mood changes that they don't even understand. 

As the disease progresses, it is crucial to react with care and compassion. If they cannot meet you in your reality, then you can meet them in theirs.

People often get really irritated and flustered when their loved one doesn't act in the way they feel they should. The more you try and correct them, the more agitated they become.

Don't take it personally. It is not them, it is the disease. 

For more information about the benefits of staying in their reality, visit The Upside of Aging blog.

 

Link Between Brain and Behaviour

There is a direct link between our brain and how we behave. This is because the brain acts as the control centre for the actions and reactions to stimuli in the environment. For a person living with Alzheimer's, the link is disrupted and the brain's messages are no longer relayed. 

It is important to know alterations in a person's behaviour can be an indication of specific physical changes to certain areas of the brain. 

The main areas of concern in Alzheimer disease:

Limbic system controls memory and emotion; it links the lobes of the brain, enabling them to connect behaviour with memories. It also controls emotion and daily function such as sleeping and eating. The Limbic system is affected early on in Alzheimer disease. 

A common example of what can happen when the limbic system is involved is that the person may not be able to find an object having forgotten where it was put. He/she may immediately assume it has been stolen. The person may become very emotional and may blame others for taking it. To diffuse the situation, do not argue, but rather suggest a plan of how to retrieve the missing object.

Temporal Lobes contains the major memory centre of the brain called the hippocampus, also part of the Limbic System, where verbal and visual memory are processed.

Verbal memories are words. Memories related to what we read, say or hear, whereas visual memory is what we use to recognize objects, faces and places, to guide us around our environments.

The Temporal Lobes also control new learning and short-term memory. We know the Temporal Lobes are affected when the individual begins to experience lapses in short-term memory. That is to say, something that happened five minutes ago is quickly forgotten. There is no ability to retain memories of the recent past and therefore the person lives in the present moment. What is seen now is reality.

For example, if you have been for a visit and left, the person that is beyond the early stage of the disease will have no memory of your visit to them. You were never there, because you are not there now. The person will no longer be able to connect time and place to the present reality.

The person may lose vocabulary skills and have difficulty understanding what words mean. He/she may go out to a familiar place and then not know how he/she got there or how to get home again.

Damage to the temporal occipital part on both sides of the brain may also cause Agnosia, that is not recognizing familiar faces, objects or places.

For the person with Alzheimer disease, losing the connection to familiar faces must be terrifying. And for caregivers, this can be one of the most heart breaking symptoms of the disease; the moment when their loved one no longer knows who they are.

A useful tip is to have photos of special people prominently displayed with their names clearly shown. This can be used to help the person reminisce about special times with people who are important to them.

The condition also applies to objects. The person may no longer recognize a familiar object or its purpose. For example, not understanding what a hair brush is for.

Part of the Alzheimer Journey is about discovering how the progressive degeneration of brain cells will impact an individual's behaviour, mood and emotions.

When supporting a person with dementia who is behaving out of character, try and look beyond the behaviour itself to discover the root cause. Sometimes behavioural changes can be a result of frustration, a sense of being out of control, or a feeling of not being listened to or understood.

Personality changes could be the earliest sign of Alzheimer's, so here are 10 early symptoms of dementia to be aware of.

Wandering during Dementia

Imagine going for a walk during the day, getting lost, and not being able to find your way back home. Or one of your loved ones wanders out in the middle of the night with no coat or socks. This is a reality the people living with dementia and their caregivers face. 

Wandering is a common behaviour for people with dementia and can occur for numerous reasons, including confusion, delusions, escape from a real or perceived threat and agitation.

It can be very scary for all involved and may lead to stress and concerns for safety.  Wandering may result in highly dangerous situations including elopement, in which the person leaves an area and is unwilling or unable to return. Six in 10 people with dementia will wander.

The easiest way to put yourself in the shoes of someone that has dementia was excellently described in an article on Fisher Center for Alzheimer's Research Foundation website.

For the wanderer himself, the experience is much like going out into a mall parking lot and not knowing where you parked—without knowing why he’s out there.
— Maria Wellisch, R.N., vice president of corporate education for Morningside Ministries in San Antonio, Texas. 

Figuring out why a person living with dementia wanders can be difficult, because each person is different. We do know that wandering is a direct result of physical changes in the brain. Research has determined that it is more common in the middle or later stages of dementia, although it can occur at any point during the disease.

The risks of wandering can be minimized through proactive steps, strategies and services.

Here are 10 ways to prevent wandering

Fighting the opposition

One of the hardest things about being a young caregiver is I often feel that my voice is not weighted the same as it would if I were older. I am not taken as seriously despite the fact I have 10 years of dealing with dementia.

There have been times during my advocacy journey when I have reached out to an organization to volunteer or join their board of directors and have been turned away. I found this was particularly the case when I tried to offer my voice, experiences and suggestions to large organizations or the government. That is one of the many reasons for this blog.

This happened to me again recently and I had forgotten what it felt like. It kinda knocks the wind out of your sails and makes you want to give up or not speak out

But after receiving an email from someone who heard my story and was touched by it, it renewed my determination to keep fighting any obstacles that will inevitably come my way.

Anytime a person speaks out or goes against the grain, they are bound to be met by opposition. However, there is nothing and no one that could stop me from channeling my experiences into effective advocacy efforts.

Here is a quote that I came across today I found really meaningful and poignant:

Owning our story can be hard but not nearly as difficult as spending our lives running from it. Embracing our vulnerabilities is risky but not nearly as dangerous as giving up on love and belonging and joy-the experiences that make us the most vulnerable.
— Brené Brown

Never stay silent!

 

Influencing the influencers

I recently shared my caregiving story with teachers, social workers and counsellors for a workshop event at Lakehead University entitled Support Matters: Young Carers - Who are they and why do they need support?

It was a rousing discussion that resulted in some of the participants asking me some really interesting questions, such as if there were points when intervention could have helped. 

While I am not technically considered a young carer, which is typically categorized as someone aged 18 or under, I can certainly understand the unique circumstances young caregiver face.

I am still discovering the true impacts of this journey, even 10 years later.

Being a young caregiver can have drastically impact all aspects of life, including, but not limited to: falling behind on school, forming relationships and a higher risk for anxiety and depression.

By increasing awareness of the potential signs of a young caregiving, influencers can intervene and arrange for supports on an individual, social or community level.

My hope is that by sharing my experiences it will help support providers be more aware, empathetic and compassionate to young people, as you never know what might being going on at home. 

Sometimes all it takes is simply asking, "How are you doing?" or "Is there anything I can do to help?". 

Knowing that someone cares enough to take the time to ask can make all the difference.

Here are 10 potential signs of caregiver stress.

Dementia diagnosis sidetracked both our lives

In an earlier post entitled Out in the Open, I talked about being interviewed for the CBC's Out in the Open podcast. It just aired on Sunday and I have been getting some amazingly positive reactions. 

People have said that the interview was humbling, wise and courageous, while others have just expressed how proud they are of me, which feels really good.

You never really know what the response to a piece like this is going to be, but I hope by putting myself out there, it will spark a conversation.

People never think this disease will impact them until it does. And by then, it is too late to have the proactive discussions about health, desires and wishes of your loved one because you are in reactionary mode and are barely trying to keep your head above water.

This disease immeasurably changed the course of my mother and I's lives, rendering us unable to have these types of deep philosophical discussions. We were both sidetracked and never really got to experience our lives the way we were supposed to at our ages.

I encourage each and every one of you to start talking to your loved ones while they are still of sound mind.

However, if you or someone in your family has recently been diagnosed, here are some key strategies to employ.

If you want to share you story or discuss what route you chose along the way, feel free to reach out.

I am here to listen.

 

 

 

 

Trials and tribulations of caregiving

My mum is fast approaching her 65th birthday and I have been trying to organize her affairs as she transitions into being officially categorized as a senior.

It has been surprisingly difficult, thanks in large part to Service Canada

I submitted the Old Age Security application on December 22, 2016, to the Service Canada office in Edmonton, to avoid the very situation I eventually found myself in.

You are allowed to apply up to 11-months prior to the person's 65th birthday. So ever the eager beaver, I submitted the application as early as possible. I was required to submit a Certified Copy of the Guardianship and Trusteeship Order, along with the application.  

The agent did not want to accept the documents at first because they had a stamp from the court. Well the document is not valid without the stamp. A 45-minute call to superiors later and she finally took them. Already off to a good start.

I was told it would "only" take 12 weeks to process the application. 

When I called to follow-up on the application on March 22, 2017, I was told that it would take an additional 12 weeks to process as my mother’s case was complicated, because she lived in three different countries in her life. I was asked to collect as much information as possible to prove when my mother entered and existed Canada starting from 1970 to present day. 

I spent the next three months contacting as many agencies as possible, including CRA, CBSA and UK Department of Work and Pension.  These agencies advised me that they do not keep records on file for the duration of time in question. 

After collecting as many supporting documents as possible, I submitted them to the Penticton Service Canada office on June 27th. 

I called again towards the end of July for an update and was told that they couldn't speak to me because I was no longer on her file. The only recourse was the escalate the case and request a call back. I did that for two months, but still to no avail.

I finally got so tired of the rigamarole, I contacted the Minister for Seniors and Housing, who offered help on a provincial level, but could not help on the federal level.

Soon thereafter, I received a letter from Service Canada stating that they could not process the application without a questionnaire being completed and that the photocopy of the trustee document I provided with the application is not a certified photocopy of the court order. All comes down to that agent that did not want to accept it in the first place.

I finally had to fly to Edmonton and go to Service Canada in person. I ended up having to go into the office twice: the first time was to provide the original copies of the Guardian and Trusteeship from the lawyer. I was given several documents for my mother to sign. This is even despite the fact that she legally does not have her mental faculties and we have the necessary paperwork in place to have signing power.

The second time, I submitted the application for Guaranteed Income Supplement, a Consent to Communicate Information to an Authorized Person affidavit (to provide consent for my brother and I to discuss her case immediately as it takes 12 weeks to process paperwork ) and the questionnaire.

I was told it would take three weeks to process the paperwork and that I would then be in the "box" which allows me to able to speak on her behalf.

I have done absolutely everything I could to facilitate this process and I am just hoping that this is the end of the trials and tribulations with Service Canada. 

I wanted to write this post to demonstrate the inefficiency of the government and the undue stress on caregivers. 

Have you experienced a similar issue? Share your story by commenting on this post!

Learn more about what financial benefits are available after 65.

Cutting edge research

I was so excited when I heard that the Medical Arts Health Research Group facility in Penticton, BC is conducting a study to evaluate the efficacy of a new medication (Aducanumab) on early Alzheimer's disease. 

This study is project is part of a global study called Biogen Engage Study and is looking to determine whether Aducanumab, can slow progression of early Alzheimer’s disease, as well as investigate whether it’s safe to use in patients.

The hallmark of Alzheimer’s disease is the development of plaques (sticky deposits, sometimes called clumps) and tangles of certain types of proteins in the brains. These plaques are made up of a protein called beta-amyloid, which is thought to be a major cause of brain cell death which contributes to the progression of Alzheimer’s disease.

Many researchers think that developing drugs to target beta-amyloid could help to slow or halt the progress of the disease, when taken early.

The ENGAGE and EMERGE studies is trying to determine how safe and effective an investigational anti-plaque medication is in slowing the progression of early Alzheimer’s disease.

They are looking for 2,700 participants from around the world to take part.

If you are worried about memory loss, review the top 10 warning signs of Alzheimer disease.

Supporting people afflicted with early-onset dementia

I recently had the pleasure of attending an early-onset dementia support group facilitated by the Alzheimer Society of British Columbia - South Okanagan and Similkameen.

It was truly an eye-opening experience as I had never attended a support group from the perspective of the sufferer. The even more interesting fact was that all of the participants were men which is quite uncommon as women make up 72 per cent of Alzheimer's patients, according to the Alzheimer Society of Canada.

To hear these men detail their struggles with the disease was profound. The brain fog, difficulty finding the right words, the expressed upset with the way they were treating their caregivers; it was like nothing I had every heard before or considered. 

Because my mom's condition has progressed, it has been difficult to ask her what she is thinking and feeling, let alone what is going on in her mind. Plus, even if she does tell me what is going on, it is hard to be sure that what she is saying is accurate.

I have asked if she understands that she has dementia and she has reassured me that she understands. I questioned how the disease affects her, and she advised me that her mind is very confused, making it difficult to remember things accurately.

What I have realized in caring for my mother, as well as becoming more acquainted with people afflicted with the same condition, is that they need just as much support as we do as caregivers.

They are confused by their own minds and the changes that are happening that are out of their control. They are understandably frustrated and often, without meaning to, take out their anger on those closest.  

I encouraged the gentlemen in the group to be patient with themselves and have repeatedly told my fellow caregivers not to take anything too personal. 

People suffering from dementia, specifically those diagnosed with early-onset, have so many things to contend with that they never expected, that we, as caregivers, need to give them leniency.

Support your loved one on this journey where no day is ever the same. But remember that you can be a better caregiver by incorporating self-care into your daily life.

With programs and services available across Canada, the Alzheimer Society supports people with dementia, their families, caregivers, and health-care professionals. 

Seek support for you or your loved one by contacting the Alzheimer Society of Canada

Out in the Open

Today I was interviewed by a producer for CBC's Out in the Open with Piya Chattopadhyay about my mother's disease and my experiences caring for her.

This was a dream come true as I always wanted to be affiliated with the CBC, I just did not expect it to be in this capacity.

It was a bittersweet moment. It was wonderful to share my story as it has the possibility of touching people, but it is hard to reveal the intimate experiences of this disease and the choices I have had to make because of it. 

The interview made me feel vulnerable. It was like exposing a part of myself that does not otherwise get to see the light of day.

I realized that we, as caregivers, do not talk enough about what we are made to endure because of this disease. I am not sure if it is because of stigma or because the sheer act of discussing it brings emotions to the surface that are otherwise boiling just underneath.

I hope that through this small act of bravery, I will encourage others to speak up and join the discussion.

Our voices and experiences have the power to make a difference.

There is no time like the present to take action.