Kelsey Grammer’s character to portray dementia?

I just learned Kelsey Grammer is starring in a drama series called “Boss.”

It’s about a Chicago mayor in the early stage of a ‘degenerative brain disorder.’ This may or may not refer to dementia.

If that’s what it means, the show should be interesting, because I can’t think of another TV series that’s tried to tackle such a misunderstood disease as dementia, especially for a character as young as Grammer’s.

Representations of dementia in movies like The Notebook and Away from Her, commercials or other media, as necessary as they are to educate the public about this illness, usually portray it as an old person’s disease.

But to educate people so they’re not overwhelmingly confused when they run into someone with early onset dementia, more popular forms of entertainment need to portray it as a mid-life and in rare cases a young person’s disease too. (Did you know the youngest person diagnosed with dementia was 17?)

Back to ‘Boss,’ the trailer (below) doesn’t mention this brain disorder, but according to an article at ZAP2it, Grammer’s character, Tom, “has a degenerative brain disorder that’s starting to affect his work and his life.”

Also, Tom’s estranged daughter ” may be the first one to realize what’s happening to her dad.” This hits a little close to home.

One critic says the pilot episode is promising, so we’ll see how it turns out and how they represent dementia.

I don’t get the Starz station, unfortunately. If you do, and if you catch the show, come back and tell us your impressions.

Celebrities must break silence about dementia, says Oxford neuroscientist

Someone’s finally highlighting what we’ve known all along:

Dementia hides in the shadow of other diseases.

The public doesn’t know what dementia is about, what it’s like for patients and what it’s like for caregivers. So they don’t know how to help, and they’re too afraid to ask.

And nobody knows how much this lack of awareness has also cost us in terms of research to find the cause and cure.

Susan Greenfield, Oxford University neuroscientist. Photo: Ben Rushton

The world needs more famous people to speak out about their dementia

There’s an “inexplicable and disturbing disparity” between the amount of money spent on research on dementia compared with other conditions such as cancer and heart disease, says Oxford neuroscientist.

We need more people (and yes, more celebrities) speaking out about dementia.

Especially now with the Baby Boomers reaching retirement age, dementia is set to skyrocket in the next little while.

But even if celebrities don’t spotlight dementia for us, we can still educate ourselves.

The best thing anyone can do is think: Do I know anyone who’s facing this disease?

If yes, go to that person, or their caregiver, tell them you want to be a listening ear for them, offer to help them, or get involved in whatever way works for you.

Here are some tips to get started: Ways to help.

Dementia in Springtime

My Dad, on one of our hikes, 2009

Loving Dad at every stage

Do you find yourself missing the way your loved one was in a previous phase of Alzheimer’s/dementia?

I do. Well, I miss the sweet parts of my Dad in a previous stage. It was the middle stage. By then he had lost awareness about his illness and had terrible outbursts of anger almost daily. But he was also very sweet, loving and self-sacrificing in his own way. He appreciated beauty, loved people and cherished hopes for the future.

That’s the part of him I miss terribly. He’s in the hospital now, the disease so advanced that he doesn’t notice the change in seasons. Some days this is too heartbreaking to bear.

Dementia in Springtime

Spring and summer bring vivid memories of my Dad. He was so antsy, he always had to be active.

So every day we went for a long walk, and we’d comment on the blossoms on the trees, and all the flowers we spotted along the way, and the different animals we saw, like a family of ducks or a stray cat. He thought they were all cute.

This was after his first, life-changing seizure, the one that ushered him from mild dementia into the thick of the most chaotic symptoms.

At times it was easy finding attractions/distractions for him and other times it was impossible. But He was always delighted by the things we saw on our spring and summer walks.

Now I can’t walk outside without aching that he isn’t by my side. I can still hear his comments about the landscaping we came across and about his dreams for the future. I miss seeing his face light up with joy and his insistence upon petting every dog we passed and telling every young child how cute they were.

Springtime at the Hospital

I see him in the hospital now, where he’s been for a year. He can’t talk anymore and barely makes eye contact. He’s too weak to spend more than a few minutes standing up from his wheelchair.

Whether he recognizes me is doubtful. And my heart aches that I can’t talk to him like I used to and that he can’t dream about the future anymore.

He took his last spring walk in 2010, when he was too sick to walk faster than a shuffle, with Mom leading him by the arm. It was even too challenging to change his shoes, so he walked in his slippers, barely aware of his surroundings.

Obviously, I wish he were totally healthy again. But those memories of him are already so faded and because I spent 2.5 years building a new kind of parent-child relationship with him, I find myself missing him when he was healthy and also when he was mid-way through the illness.

I suppose when he passes away, I’ll miss my Dad in the advanced stage too. At least right now I can still hold his hand and I can tell when he’s happy and  hug him and tell him “I love you” and sometimes even hear him say, “I love you too.”

I’ve been missing him for eight years now. But I especially miss him in springtime.

Urgent: Toronto Central CCAC leaving clients in danger

We have an urgent problem:

A friend of mine lives with his elderly mother who has a form of dementia that makes her aggressive and dangerous. But she isn’t just a danger to him, she’s a danger to herself too. She’s diabetic, and she no longer knows how to take care of herself.

Toronto Central Community Care Access Centre (CCAC) refuses to do a capacity assessment with her in her home.

The son’s stress level is through the roof, and thanks to Toronto Central CCAC, neither he nor his mother have access to dementia programs or dementia care.

We know that CCAC has laws and policies it has to abide by. But this particular policy loophole is tantamount to gross negligence. CCAC is aware of the danger the son is in as he tries to care for his mother. If anything were to happen to him or to his mother–policy or no policy–to the rational eye it would be entirely on CCAC’s shoulders.

The Toronto Central office should rename themselves: Toronto Central Community Care ACCESS DENIED Centre.

Okay, all jokes aside, here are the other avenues my friend has tried so far:

- family doctor (he has expressly stated his unwillingness to work with his clients on dementia issues)

- hospitals (they give her assessments but always end up sending her home with no follow-up plan or long-term plan

- specialists (my friend’s mother refuses to see health care providers because suspicion and paranoia are symptoms of the dementia)

- police (they’re already tired of responding to emergency calls from my friend’s household; they also do not offer follow-up or long-term help)

What can be done to get this caregiver the protection he needs in order to keep caring for his mother??

On life-preservers and almost drowning

A couple years ago when I talked with community organizations who supposedly deal with patients living with dementia, I explained that Dad didn’t understand the need for someone to stay with him during the day while the rest of us could go to work and school (I was in a full-time masters program at the time). I also explained that he physically walks out of day programs and that one of us had to skip work/school to stay at home with him. I said that we were desperate for a solution so that we wouldn’t lose our livelihood.

These community organizations responded, saying they had no way to help us, and then they said, “Do your parents have a church or family in town?”

Well, when I explained our difficult situation to our relatives and my parents’ church, their response was, “We can’t help you. Have you talked with the government?”

When I spoke with our social worker, she said, “Well, we can’t conjure up a solution out of thin air. We can’t help you.”

And that was it… Either Mom faced losing her job or I was going to put off my studies (with no way of paying off student loans) so that one of us could stay at home with Dad full time. We had no clue what the future would hold, but we knew we’d probably end up in debt and in trouble. It felt like we were drowning, and most people around us had no clue, because they didn’t know what this kind of drowning looks like so they didn’t recognize it in us. And when I tried to explain to relatives and church members just how desperate we were, some of them got defensive and attacked ME.

However, a few extraordinary families and churches (not my parents’ church so much) helped us bridge that gap. They threw us a life-preserver in a very dark and hopeless situation. Because of them I was able to finish school, and we were able to move to a new place where our whole family lived under one roof and all of us kids pooled our resources so that Mom wouldn’t have to work and could stay home with Dad.

Oh, the lack of understanding in our whole society about what dementia is really like for its victims and their caregivers is absolutely stunning. I feel grieved at how under-prepared society really is for the increase in Alzheimer’s/dementia diagnoses that will come our way as the Baby Boomers age.

But on a much brighter note, the incredible generosity in the hearts of those who reached out with help for us is even more stunning. I feel encouraged that with compassion and sensitivity from people like this, there is still some hope for future dementia sufferers and their families.

Forgetful Not Forgotten

When this man was diagnosed with early onset dementia at 57 years old (same age as my Dad), his son began filming his family’s experience. Oh man, I have never seen anything so moving and so revealing about what my own family is going through because of this cruel disease.

“Forgetful Not Forgotten” will touch many lives out there, comforting families with the knowledge that they’re truly not alone in their struggles, and that others have survived all of the same challenges and bittersweet milestones and grieving periods along the way.