Thursday, January 11, 2018

Caring for Alzheimer's patients: what you must know

Photo by Marjan Lavarevski

This advice for caregivers of Alzheimer's patients comes from my good friend Michele Macomber. She gave me permission to post this in the hopes it reaches those who need it.
. . .
I was hunting for a good basic dementia information site to share – they are legion; pick one - and I was struck by this meme from The Alzheimers Reading Room:
Around one half of respondents agreed:
As soon as someone is diagnosed with dementia,
they are no longer treated like a thinking human being.
Since my dad died almost four years ago, our attention has turned to caring for my mom, and this statement has proven heartbreakingly true.

I have been lucky enough to have a family member who is trained in teaching children, families and professional caregivers about the social needs of dementia patients to clue me in. She has been able to explain what's going on with our mother's mind, and what she can and can not do with it. Details have been quite specific about what kind of support my mother needs from her caregivers, family and community.

While these needs and how to meet them seem obvious once explained, I notice again and again how even the most dedicated and compassionate doctors, caregivers and friends are unaware of how to be with, and support or assist patients and loved ones living with dementia.

This dismaying gap in public awareness of how to accommodate what is essentially a common disability – one in six women and one in ten men over the age of 55 will get it – needs to be closed.

Over the last three decades, as our society developed an awareness that Americans with disabilities have a right to be accommodated, we moved to install ramps, handrails, wider doorways, and beeping crosswalk signals, provide telephone and on-line services for vision- and hearing-impaired individuals, and pass laws guaranteeing access to public places for service animals.

We have also figured out that when we see our fellows who once were kept hidden from society - persons with developmental delays or intellectual disabilities - that we see them as people, treat them with respect, make the allowances they require and value them for their contributions and membership in our society.

Over the last three years I have taken my mother to many doctor's appointments, sat with her during three emergency room intakes and two hospital stays, and seen her in the care of countless “memory care” caregivers. (Quotes because in the UK “memory care” refers to a pretty complex understanding of how to effectively engage with someone with dementia, whereas in the US it more often refers to a locked-down facility for Alzheimers patients, with at best only a passing nod to dementia-appropriate activities.)

It took us a couple of years to figure this out, unfortunately. What often happens is a doctor or nurse walks in, talking fast, firing questions or telling us what they are about to do. Sometimes they address my mom, sometimes they don't, assuming it's pointless.

Either way she is confused by what is going on and she can not understand what they are saying.

It's disrespectful to her, and frightening for her.

I break in at this point and tactfully offer them a one minute crash course in communicating with dementia patients.

I explain, while demonstrating, that if you take my mother's hands in yours, look her in the eye, and speak clearly and distinctly, that she can actually understand everything.

She usually proves my point at this moment by responding with a reasonable and intelligent reply. The looks of surprise (It speaks!) are gratifying. The neurological ward nurses were delighted with this trick. Despite having hundreds of elderly patients with dementia in their care, this one little essential thing had never been included in any of their training.

One's identity is what makes a person herself.

Think about what makes you yourself for a moment: your memories, your community, the creative work you do, being needed and useful, your home, what music you love, your faith.

Caring about someone who has dementia is heartbreaking and infuriating as the stuff you like doing together and your usual ways of relating to them stop working well.

Your friend has become a different person.

But for your friend, they have not ceased to be themselves inside.

For them, these changes are terrifying and profoundly depressing as bits of identity blink on and off and eventually don't blink back on again.

They have a disability that makes it hard for them to go where they want, do what they want, organize, make phone calls, use electronics, remember names or words, separate past from present, ask for help, hear, see.

Their essential self is still in there, but they can no longer make the first move.

What they need most is help staying connected to their identity; they can no longer reach out, so we must reach in and help them.

This is when they need their community to stand by them and show them they are still wanted, needed, useful, interesting, loved, a valued member.

This is what needs to enter the public awareness. 

If you have had someone close to you with dementia, you already know.

If you realize that you have a friend who is getting dementia, help them stay connected to their community and to themselves because their increasing difficulty doing this for themselves is a disability that needs its own kind of access ramp.

We need to spread the word.

My mother's mind is still in there, it's just ensnared in the plaques and tangles.

If she seems muddled and I miss my mom, I only have to tell her my troubles and there she is, offering sympathy and comfort. If she is confused in the modern world, I read her James Herriot stories, full of 1930s English farms and countryside, and she becomes oriented within a world that makes sense. If she complains that the caregivers are being beastly to her, I ask her if she means the nuns at St. Audrie's, and she says, “Yes!”, as though I wasn't keeping up and have asked a silly question.

Please help spread the word so we can increase awareness and compassion. No one is ever too far gone to be treated with grace and humanity.

Michele Macomber 

Tuesday, January 2, 2018

New year’s wishes, from Neil Gaiman

"I hope you will have a wonderful year, that you'll dream dangerously and outrageously, that you'll make something that didn't exist before you made it, that you will be loved and that you will be liked, and that you will have people to love and to like in return. And, most importantly (because I think there should be more kindness and more wisdom in the world right now), that you will, when you need to be, be wise, and that you will always be kind." ―Neil Gaiman

Saturday, December 30, 2017

Never underestimate the impact you have on others

You might think that you don't matter in this world, but because of you someone has a favorite mug to drink their tea out of that you bought them. Someone hears a song on the radio and it reminds them of you. Someone has read a book you recommended to them and gotten lost in its pages. Someone's remembered a joke you told them and smiled to themselves on the bus.

Never think you don't have an impact. Your fingerprints can't be wiped away from the little marks of kindness that you've left behind.

Saturday, December 16, 2017

Ira Glass on what it takes to be successful in creative work

Nobody tells this to people who are beginners. I wish someone had told me. All of us who do creative work, we get into it because we have good taste. But there is this gap. For the first couple years, you make stuff, it's just not all that good. It's trying to be good, it has potential, but it's not. But your taste, the thing that got you into the game, is still killer. And your taste is why your work disappoints you. A lot of people never get past this phase; they quit. Most people I know who do interesting, creative work went through years of this. We know our work doesn't have this special thing that we want it to have. We all go through this. And if you are just starting out or you are still in this phase, you gotta know that it's normal and the most important thing you can do is do a lot of work. Put yourself on a deadline so that every week you finish one piece. It's only by going through a volume of work that you will close that gap, and your work will be as good as your ambitions. And I took longer to figure this out than anyone I've ever met. It's gonna take a while. It's normal to take awhile. You just gotta fight your way through.

Ira Glass

Saturday, November 25, 2017

Top 5 Regrets of the Dying

Top 5 Regrets of the Dying:
  • I wish I'd had the courage to live a life true to myself, not the life others expected of me.
  • I wish I hadn't worked so hard.
  • I wish I'd had the courage to express my feelings.
  • I wish I'd stayed in touch with my friends.
  • I wish that I had let myself be happier.

Saturday, October 21, 2017

Patton Oswalt on His Wife Michelle McNamara’s Tragic Death

"A lot of times with grief, it's not that you can plan what to avoid and what to go to. Memories can ambush you. And you get used to that. The plans and contingencies I make don't matter. This thing is going to have its way with me one way or another."

(Sent from my phone)

Thursday, October 12, 2017

Grief, loss, death and waves

(From Reddit)

"My friend just died. I don't know what to do."

A lot of people responded. Then there's one old guy's incredible comment that stood out from the rest that might just change the way we approach life and death.

"Alright, here goes. I'm old. What that means is that I've survived (so far) and a lot of people I've known and loved did not. I've lost friends, best friends, acquaintances, co-workers, grandparents, mom, relatives, teachers, mentors, students, neighbors, and a host of other folks. I have no children, and I can't imagine the pain it must be to lose a child. But here's my two cents.

"I wish I could say you get used to people dying. I never did. I don't want to. It tears a hole through me whenever someone I love dies, no matter the circumstances. But I don't want it to "not matter." I don't want it to be something that just passes. My scars are a testament to the love and the relationship that I had for and with that person. And if the scar is deep, so was the love. So be it. Scars are a testament to life. Scars are a testament that I can love deeply and live deeply and be cut, or even gouged, and that I can heal and continue to live and continue to love. And the scar tissue is stronger than the original flesh ever was. Scars are a testament to life. Scars are only ugly to people who can't see.

"As for grief, you'll find it comes in waves. When the ship is first wrecked, you're drowning, with wreckage all around you. Everything floating around you reminds you of the beauty and the magnificence of the ship that was, and is no more. And all you can do is float. You find some piece of the wreckage and you hang on for a while. Maybe it's some physical thing. Maybe it's a happy memory or a photograph. Maybe it's a person who is also floating. For a while, all you can do is float. Stay alive.

"In the beginning, the waves are 100 feet tall and crash over you without mercy. They come 10 seconds apart and don't even give you time to catch your breath. All you can do is hang on and float. After a while, maybe weeks, maybe months, you'll find the waves are still 100 feet tall but they come further apart. When they come, they still crash all over you and wipe you out. But in between, you can breathe, you can function. You never know what's going to trigger the grief. It might be a song, a picture, a street intersection, the smell of a cup of coffee. It can be just about anything... and the waves come crashing. But in between waves, there is life.

"Somewhere down the line, and it's different for everybody, you find that the waves are only 80 feet tall. Or 50 feet tall. And while they still come, they come further apart. You can see them coming. An anniversary, a birthday, or Christmas, or landing at O'Hare. You can see it coming, for the most part, and prepare yourself. And when it washes over you, you know that somehow you will, again, come out the other side. Soaking wet, sputtering, still hanging on to some tiny piece of wreckage, but you'll come out.

"Take it from an old guy. The waves never stop coming, and somehow you don't really want them to. But you learn that you'll survive them. And other waves will come. And you'll survive them too. If you're lucky, you'll have lots of scars from lots of loves. And lots of shipwrecks."

Tuesday, October 3, 2017

You be you

Society tells us we should be beautiful and strong and successful to be valuable. But even though my husband's mom was all those things, not a single person has stopped over since her sudden and unexpected loss to say "we miss her, she was so beautiful!" "We are so sorry for your loss, she lived her life right!" (Isn't that what we do, look at our peers or things we want and say to ourselves, "this is how I *should* live, this is the 'right' way to be"?)


People remember kindness and sweetness and generosity and compassion. How you made them feel. That they always felt welcome in your presence, that they felt loved and appreciated. They notice positivity and how you never said negative things about other people. That you walked through life with love and an open heart.

So many or the things we place value on in this life don't really matter in the end.

Do not worry about bad hair days or "extra weight" or pimples or wrinkles or any of the other things people scrutinize when they look at themselves in mirrors. You be you, and know you are loved.

Monday, October 2, 2017

Redemption Song by Kevin Young

Finally fall.
At last the mist,
heat's haze, we woke
these past weeks with
has lifted. We find
ourselves chill, a briskness
we hug ourselves in.
Frost greying the ground.
Grief might be easy
if there wasn't still
such beauty — would be far
simpler if the silver
maple didn't thrust
it's leaves into flame,
trusting that spring
will find it again.
All this might be easier if
there wasn't a song
still lifting us above it,
if wind didn't trouble
my mind like water.
I half expect to see you
fill the autumn air
like breath — 
At night I sleep
on clenched fists.
Days I'm like the child
who on the playground
falls, crying
not so much from pain
as surprise.
I'm tired of tide
taking you away,
then back again — 
what's worse, the forgetting
or the thing
you can't forget.
Neither yet —
last summer's
choir of crickets
grown quiet.

(Sent from my phone)

Tuesday, September 26, 2017

You will always be too much of something for someone...

"You will always be too much of something for someone: too big, too loud, too soft, too edgy. If you round out your edges, you lose your edge." - Danielle LaPorte, The Positivity of Pride

Friday, September 15, 2017

How to Be a Writer: 10 Tips from Rebecca Solnit

"Listen to your own feedback and remember that you move forward through mistakes and stumbles and flawed but aspiring work, not perfect pirouettes performed in the small space in which you initially stood. Listen to what makes your hair stand on end, your heart melt, and your eyes go wide, what stops you in your tracks and makes you want to live, wherever it comes from, and hope that your writing can do all those things for other people. Write for other people, but don't listen to them too much."

Thursday, September 14, 2017

Education quote from The West Wing

"...Education is the silver bullet. Education is everything. We don't need little changes, we need gigantic, monumental changes. Schools should be palaces. The competition for the best teachers should be fierce. They should be making six-figure salaries. Schools should be incredibly expensive for government and absolutely free of charge to its citizens, just like national defense.

"That's my position. I just haven't figured out how to do it yet."

- Sam Seaborn: The West Wing.

(Sent from my phone)

Sunday, September 10, 2017

Which hobbies or experiences have made you a better designer? (Ask a Designer: Frank Chimero – Framer)

"Here's what I believe: Reading and meditation open up your head and re-establish a better pace of time versus the frenzied internet. Cooking balances out the sensory experience of design work by giving you texture, smell, and taste. Personal loss forces you take your job a little less seriously. Self-reflection and good relationships help you see yourself as a part of the family of things. These don't necessarily have much to do with design, but if I take care of my whole self, the part of me that is my job follows. Nothing else has ever worked."

(Sent from my phone)

Wednesday, September 6, 2017

Seth Godin, on the (non) value of negative feedback

"I never met an author who said 'I just finished reading all the 1-star reviews of my book on Amazon and it made me a better writer.' Limit feedback from people who don't make you better. Don't engage. It will get in the way of your work, and your work is too important." Seth Godin