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.

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.

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.

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??

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.

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.

At any rate, while this video doesn’t protray the more challenging side of the disease, it still does justice to the bittersweet existence of dementia sufferers, and the reality that their loved ones live with daily. Enjoy!

Thanks to Zsuzsanna Kilian for this photo

The root of my fatigue is grief. I can’t really think of a good metaphor right now, but in a way I’ve come to see my energy like layers of an onion. Long before all the death and illness in my family, I remember times when my outer layers sometimes felt battered and worn and totally out of strength, but at the time I wasn’t aware and couldn’t appreciate how much resilience I had left inside, closer to my core.

But in 2004 my Dad lost his job (I had never seen him so despondent) and we grew more alarmed at his forgetfulness, not to mention more financially desperate. Feeling repeatedly shocked and alarmed and desperate for months at a time takes its toll on a person. And in surprising ways too.

I was rocked by Dad’s seizures, his surgery, his hallucinations and paranoia, and the disease’s steady advance towards its most volatile stage, where it hovered for several years. Scott and I had no chance to experience our newlywed years normally. Day and night we were called to my parents’ place for emergencies when Dad had an angry outburst, or was lonely, or when Mom needed help with chores and errands because his need for her full attention was almost constant. I was also responsible for finding help and friendship for my parents. Mom certainly had no time to ask for help, and with Dad always nearby, she had no way of describing her need without Dad becoming suspicious. So the task landed squarely on my shoulders. I did it out of love for my parents, and out of desperation for relief in my own caregiving schedule. Asking for help usually doesn’t tire a person out too much, unless you’re forced to do it regularly for months on end, especially when you can tell people have gotten pretty sick of hearing from you. But, having exhausted community resources already, we had no option but to ask our church, friends and family for help, with a heap of apologies thrown in and a mounting burden of guilt for being so frustratingly dependent on them for our survival.

My nerves were also shot by Dad’s inability to understand heartbreaking realities, like why I had to stay with him so Mom could go grocery shopping, and why I was sometimes so stressed because my time with him meant I wouldn’t get school work done. During my full-time studies, I spent at least five days per week (at six or seven hours per day) trying to keep him happy and occupied–another exhausting endeavor, all the while wondering how I’d finish my classes and thesis.

Before this situation descended on us, I also had no idea how deeply exhausting it was to have to hide one’s grief. We were forced to hide our heartache from Dad and just about everyone else most of the time for three years. We smiled out of necessity when most of the time our hearts were heavy and bleeding.

Meanwhile, how do you tell a grown person, your own parent no less, when their behavior is inappropriate? You can’t discipline them or give a lecture or send them to their room. You can’t take privileges away either. We discovered–and professional advice said the same thing–that you just have to ride it out. In fact, often you have to agree with the outrageous or insulting or dangerous claims made by a person with dementia. If you show any disagreement, it will only make the person more dangerous and volatile. We walked on eggshells 24 hours a day for three years, because at any moment he could become angry at us for not “letting” him drive the car (his license had been revoked by the doctor in ’06). I had to agree with my Dad’s enraged comments that whoever was responsible for him not driving a car ‘had it coming to them’. Can you imagine? I can’t tell you how often I questioned the sanity of the words I heard myself saying, just so that Dad would eventually calm down to a manageable state again. Nowadays, when Mom and I attend a support group for families of people with dementia, we tell these same stories and around the table are the smiles and nods of people who’ve been there and know all about the helplessness and absurdity of our daily existence.

The stress was incomprehensible. Our sleep was regularly interrupted, but on the nights with emergency phone calls my brain still never slept deeply; I had to remain subconsciously alert for the next crisis call, and the next, and the one after that. I bid farewell to my health, and I was often worried but never surprised when I buckled under the influence of the latest virus, or when the knots in my stomach felt like they had petrified into permanence, or when my lymph nodes lit on fire. Our daily existence resembled an ‘every man for himself’ scenario, and I couldn’t simultaneously keep my parents afloat, redeem my school year, and save my immune system on top of it all. Health is often the first thing caregivers let go. Friends and concerned onlookers kept telling me to take care of myself, take time for myself, do something, anything, to get away from the stress for a while. They meant well, but they didn’t realize that when you’re dealing with a difficult stage of dementia, especially when your loved one depends on you 24/7, nothing less than chaos and violence would ensue if you ever actually tried to ‘get away from it all’. It just wouldn’t work. So we plodded onward.

Other, less sympathetic, folks flatly told us to put Dad into a nursing home. How little they knew! And how little they seemed to care. Did they even wonder whether Dad was actually ready for it? Whether WE were ready for it? Did they not know that the timeline from touring nursing homes to arranging Dad’s assessment to sitting on the nursing home wait list could take years? Did they not consider the terror Dad would’ve felt had he gone there before he was ready? How could we put him, and ourselves, through that? On the contrary, the folks at our support group surprise me over and over again with their intimate, heart-felt familiarity with our challenges. They’ve worn themselves into the ground as caregivers, and they too have been on the receiving end of that same, blunt question: Well, why don’t you just put her in a home? the bystander asks, as if the answer were so easy. But she isn’t ready yet! the caregiver answers, knowing he’s the only one who will protect his loved one from the consequences of premature institutionalization. This in-between stage of dementia drains us to the core; it’s almost impossible for the caregiver to survive, yet employing a nursing home too soon would be infinitely worse for us and our loved ones.

My energy held up pretty well, I think, until last year when three important people in my support system died unexpectedly, and when one relative’s suicide almost caused us to lose another close relative from attempted suicide. Right in the middle of that, of course, was our move to another city, my dance on eggshells to help Dad through our relocation to the new house, and the all-nighter we pulled while moving so we could attend my uncle’s funeral the next morning. 2009 was our year of death, and all the while we watched Dad dying bits and pieces at a time. I wanted so badly to hold onto his personality, his memories, the heart of his identity, to protect him from breaking down, but it was like cupping water in my hand and trying desperately to stop it from dripping between my fingers. It couldn’t be done. To this day we still watch pieces of my Dad loosen their grasp, fall away, and evaporate out of existence. I feel helpless and devastated, like bits of my spirit fall and disappear with him.

I’ve never been so utterly battle-weary and drained. When Dad was taken from our home to the hospital in March of this year, it was my most heartbreaking day yet. He was so scared and confused. He didn’t know they were on their way to get him, but just before they came for him I had watched him hug Mom (who was weeping), telling her how much he loved her. I wept most of the day too, even while trying to calm and comfort him in the emergency room.

Later on, when the hospital had taken over his minute-to-minute caregiving, I thought my nerves would release their tension, but they didn’t. They were stretched and bent way out of shape and they seemed frozen that way. Healing has been surprisingly slow and painful since then, almost like the pain you feel in your fingers and toes warming up after they’ve been exposed to freezing cold temperatures too long. And seeing Dad decline, becoming even more fragile and vulnerable and mentally lost hasn’t helped.

Back to my inadequate onion metaphor. Each year of this journey has witnessed the removal of another layer, shrinking from the outer layer of surplus energy down to desperation and farther on down to survival. By the time Dad left for the hospital in March the core of my resilience hung by a tattered thread. At that time I was already employed, operating under a tough-as-nails manager who actually had two harassment complaints filed against her. Working under her scrutiny finished what was left of me holding myself together.

This is all so hard for me to articulate, though, without overflowing into a stream of consciousness like this. In some ways I feel like Frodo near the end of his interminable and hard-fought journey, wounded in body and spirit. When you’re exhausted beyond words and when nothing will ever be the same again, what is there left to say?

Check out John Piper’s ministry for inspiration!

• Disability Ministry @ Bethlehem Baptist
• Disability Ministry Blog

Photo by Penny Mathews

In March, after five years of living through the daily progression of Dad’s dementia at home, he was finally hospitalized. The move isn’t permanent, but it marked the end of our family’s ability to care for him without serious help.

Burnout began before Dad’s departure. My immune system surrendered to the pressure of regularly interrupted nights and intense emergencies, and a host of infections and illnesses turned up one by one to have their way with me. Flu, strep throat, bladder infection, et cetera.

When Dad left, the house took on a heartbreaking stillness. We missed him dearly. Surrounded by this quiet, though, and by the promise of no more emergencies, I finally exhaled, as though I had been holding my breath for the last five years. I also realized how close my nerves had come to snapping, and that unwinding them was neither easy nor painless.

Tears were still too close to the surface. Sleep was still unsettled. Depression drained my motivation. Anxiety attacks left me shaken and exhausted. They still do.

I was barely able to drag myself through the work day, and fortunately my job contract ended in May. Since then I’ve been at home, spending my time resting, exercising, reading, evaluating my goals in life, and sending out the odd resume.

My husband and I want to have a family soon, but I wonder how my nerves would handle pregnancy at this time. Energy and resilience are still a far-off dream for me, because I haven’t figured out how to overcome five years of caregiver burnout, and because our future (Dad’s future) is still uncertain.

Life turns out perfectly for some young couples, it seems. Jobs, kids, and leisure fall into place just as they’d always planned. For others, like us, life seems to be a series of drawbacks and uphill battles. Our nerves are stretched out of shape, we’re tight on money, and I’m stuck between the choice of employment or motherhood. And time is running out on both. I guess right now I’m needing help to see the bright side.