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Not sure if this is useful to anyone, but I had a big breakthroughs in my idea of self-care recently when I applied a phrase I use to combat negative self-talk – “Would you talk to a close friend that way?” – and reframed it as: “Would you care for a friend that way?”
Imagine my friend came to visit and she got hungry. Would I say, “Wait five hours until I’m done with this project and then you can eat a granola bar?” No, I would not. Would I say, “I’m don’t have time to go grocery shopping for you, so why don’t you spend three days straight eating this years-old Ramen I found in the basement that one of my old roommates left behind?” No, I would not. If her clothes got dirty, would I say, “I’m too lazy to scrounge up some quarters so why don’t you wear these ill-fitting clothes from Goodwill with holes in them?” No, I would not. If she had a day off, would I say, “I can’t be bothered to find something good for you to do; why don’t you just sit on the couch reading depressing internet articles all day?” No I would not. And if I were at a party, and she was tired and feeling uncomfortable and wanted to go home, would I say, “Stop being such an awkward loser, stay here and smile at people so they don’t think you’re rude?” No, I would not. A person I treated that way would be justified in wondering if she was my friend at all.
But, needless to say, I treat myself that way all the time. Once my friend has all her basic needs taken care of, sure, we can go for manicures and massages after. But that’s not the point. The point is making sure she’s fed and washed and clothed and comfortable; and I don’t think I’m the only one who has a whole lot of trouble even getting to that point.
pretentious illiterate (that’s their username, not an insult) on Metafilter (via gazztron)
Yikes! I just learned that there are 4 “A’s” associated with Alzheimer’s. Amnesia, which everyone is familiar with, is of course the memory loss. But as I keep saying, Alzheimer’sis about so much more than memory and these other A’s seem to reinforce thatidea. I had never heard of these terms before (other than amnesia) so they were
certainly new to me.
Agnosia, is when a person can’t quite recognize what an item
is for or is unable to recognize it at all. For example, Laura was helping me
put up some dishes and she held up a spatula and asked “where does this go?”
Glancing over, I said, “top drawer, right of the stove.” Probably too many
words all at once, but she couldn’t get past the stove part. She started to say to herself, “stove, stove,
stove” as she did a 360 in the middle of the kitchen. I realized that she either didn’t see the
stove or if she did, she didn’t recognize it and so I pointed to the drawer and
said, “it goes right there – in that drawer.” But she was hung up now on
finding the stove and she kept looking for it. I had to finally touch the stove
and say “here is the stove and the spatula goes here” pointing to the correct
drawer. She muttered a quick “of course, what was I thinking?” and moved away,
but I could tell that she was both a little embarrassed and frustrated with
herself over the incident.
Aphasia is the inability to use speech correctly. Laura is frequently using general
descriptions now to identify an object as opposed to its name. This makes for a
dangerous game of charades, because I find that I must bite my tongue to keep
from giving her silly answers or get animated when she is trying to tell me
something. The last thing she needs is for me to interrupt her train of
thought. I have to pat myself on my back because I am getting pretty good at
deciphering her descriptions. Her speech is often halting, with many starts and stops and a lot of misdirection. “What are
you looking for Honey?” is a fairly common question these days. “It was right here… you know, the pink one
with…store… makeup… before… it….’ That was it; but it was enough. I was lucky
that she used two fairly key words in there to help me out: Pink and make-up. That
meant she was looking for the pink case where she keeps most of her makeup.
Sometimes I’m not so lucky.
The last ‘A’ is Apraxia. It is when there is a loss of
motor coordination. Laura has trouble now often doing simple tasks such as
buttoning her blouse or signing her name. It’s like she knows what she wants
to do, but can’t get her hands or fingers to cooperate. Sometimes she may reach
for something but miss it entirely or on the other extreme, hit it with her
hand.
Unfortunately Laura has her ticket punched for all of these,
and it is my job to see that she keeps her dignity by not calling attention to
them. Like most other symptoms of Alzheimer’s these come and go and vary in
degree of severity when they are around. Sometimes I marvel in that she can put on a necklace
that has a tiny, tiny clasp. Other times, she calls for help in tying a bow or
is incapable of turning the knob to turn on a lamp.
All of the A’s are bad but we’ll somehow work through them
all, but the one that scares me the most is Agnosia. I’m dreading the day that she not only forgets what the stove is; but forgets who I am
as well.
For most of my lifeI had heard the expression, “live in the moment” and thought I understood what it meant. After all,what free spirited thirty something doesn’t think that it means to be spontaneous or do something outlandish and never-mind the outcome or the consequences.
Fast forward a few decades and with a diagnosis of
Alzheimer’s strapped to my wife, I heard people say over and over, “live in the
moment!” To me that now meant, ‘do what you can while you can’. I thought I
understood, but I really didn’t.
Lately as Laura has been slipping so much, I think I am
finally beginning to understand. She
said something really funny the other day, and we both cracked up and were
laughing so hard we were crying. When we both had it down to some chuckling, I
wiped my eyes and said the obvious, “That was really funny.”
“What was?” she sincerely asked, still smiling broadly.
“What you just said” I replied softly. All of the
implications of her short term memory loss hit me like a ton of bricks.
“Oh, what did I say? I don’t remember.”
I wanted to wipe my eyes now for another reason. The moment of laughter that we had shared had
passed, even quicker than it came. Then I understood. Living in the moment is not
about doing anything; it’s about
absorbing those few precious seconds that you can share. Today it is laughter or reliving the flicker
of a memory. I don’t know what it will be tomorrow. It might just be the flash
of recognition when she sees me. I don’t know. But I do know that I will relish
every second of it.
Pictured above left: Katherine “Kit” Kerr at age 70. Above right: Kit and her husband, Howard, picture taken at their marriage in 1973. I first encountered Katharine Kerr’s writing in 1986 with the publication of her debut novel, Daggerspell, the opening volume of her much lauded and loved Deverry…
We have set up this fundraiser specifically to pay for care for Howard to allow her to write, either a health aide to come to the house or an adult daycare specifically designed for Alzheimer’s patients. She cannot afford this unless we help. We have set a basic goal of $12,000, which should give Kit 20 weeks of coverage. Any money raised over that amount will go for more of the same.
The symptoms were hardly noticeable at first. In fact, had Meryl Comer not been a veteran TV news reporter, she might have missed the subtle changes in her husband’s behavior. Even then, she chalked up his sudden lack of focus and lightning-quick temper to job stress: Harvey Gralnick had a prestigious position as a physician and chief of hematology/oncology research at the National Institutes of Health. Two years and countless medical exams later, Comer’s husband finally was diagnosed with early-onset Alzheimer’s. By that time, the disease had already scrambled their lives and dashed their dreams. Gralnick was 57; Comer was just 50.
If Alzheimer’s is about forgetting, Comer’s just released book, Slow Dancing with a Stranger, is about bearing witness to everything Alzheimer’s took from her husband and her family. Equally important, it’s a call to action for women who, as caregivers, are most often Alzheimer’s second victim. What distresses Comer is that there are no better options for women today around care than there were 20 years ago. There are still no disease-modifying drugs or treatments for Alzheimer’s, a fatal neurodegenerative disease that has no cure.
Holding the Bowl 