Sunday, December 29, 2013

The Best Christmas Ever

Eileen and Dad
Dad got a lovely Christmas gift when my cousin, Eileen, and my Uncle Jim, came to visit him on the 26th. Dad and my Uncle Jim were high school friends who married sisters: Marion (my mom) and Peg (Eileen's mom). We kids grew up just a few blocks from each other. But when Dad retired, he moved back to his home town of Scranton, PA, and Uncle Jim retired to Florida. Mom and Peg both passed, and it had been a number of years since the "boys" had seen each other.

I worried that Dad wouldn't remember Jim, and, at first, it did seem that way. The name seemed familiar to him, but you could tell the connection wasn't quite being made. At one point, though, we moved their chairs side-by-side for photos and the proximity seemed to do the trick. Dad looked at Jim, leaned over, and said, "Long time, no see, James."

Dad and Uncle Jim
I about broke down crying. Dad sounded just like his old self for a moment there. He used to call my Uncle "James" when he was being playful. And the fact that he knew he hadn't seen him in a long time? Amazing. Just goes to show that you never know how much is truly going on in an Alzheimer's brain.

We had a lovely visit. It was so good to see them. I'm hoping Dad carries the memory of their Christmas visit tucked away in his heart for many days to come.

Some memories:

Mom, the bridesmaid, Peg, the bride.

The sisters, with some of the cousins. (Psst,
that's me in the front in the red.)

Friday, December 20, 2013

A Super Duper Girl

Lately, during our visits, Dad will fixate on a thought and run with it. Sometimes it seems to be about a military experience (boot camp,maybe), and other times its about a train or bus trip he needs to take. But for our entire visit, he will run that conversation in a loop, like a broken record.

Sis says that Wednesday was a military day. Today, he was going on the trip.

"Where do I get my tickets?" he asked.

"Don't worry about it, Dad. I'll pick them up for you."

"We need to get them quickly."

"I know, Pops. I'm going to pick them up on my way home."

"Tonight?" he asked.

"Yep. As soon as I leave here," I assured him.

"Geez," he said, winking at me, "you're a super duper girl to do that for me."

Awww.

Later on, after explaining some of the vague intricacies of the trip that were worrying him, I assured him I would help in any way I could.

He then gave me the following fatherly advice:

"Whatever you do, do the right thing, but don't stick yourself...in the boot."

I think he was going for "Don't shoot yourself in the foot."

I assured him I wouldn't. ;)



Friday, December 13, 2013

Not Quite So Merry This Year

Me and Dad. He always seems
to look tired these days.
Dad's world is shrinking again. Sis and I attended Memory Care's holiday party for residents and family on December 6th. It was bittersweet. I don't think Dad has any concept anymore what "Christmas" or "holiday" means. The hustle and bustle of the party only served to make him uncomfortable and, like last year, he worried that all the noise would bother the neighbors. The live music, even the carols, were nothing more than a distraction to him. By the time the party was over (around 7:00) he was completely done in and ready for bed.

He does have his moments, though, and can still make us laugh. When Santa arrived at the party and we pointed him out to Dad, his comment was, "Good, tell him to come to my house."

The next day was the annual Holiday Craft and Bake sale at the assisted living facility (the proceeds go to the Alzheimer's Association) and I was there with a
Me, Sis, and Dad
vendor table. Mary, Dad's companion three days a week, brought him out to visit with me while she did a little shopping. Afterwards, she bought him a hot dog, which he promptly gobbled down. It tasted so good, he asked for another. It was good to watch him getting enjoyment out of such a simple treat.

It's hard to grasp that Dad will never "celebrate" another holiday or momentous occasion. To him, now, they are just ordinary days.

And I do recognize that it's *me* that is finding this difficult, not him. He can't miss what he can't remember.

But I can.

Dad still loves a good hot dog.

Dad's roommate, Al, and his daughter, Cathy, at the
Christmas Party.

Saturday, November 30, 2013

Where's Cindy?

Very tired today.
Holidays are difficult. It's hard to enjoy them when you know your loved one can't.

Dad is becoming more and more confused. His difficulty with eating has progressed from forgetting how to use a fork or a spoon to forgetting how to bite down on a piece of food, or how to get the food from his hand to his mouth. Often, I will hand him a cookie or a piece of sandwich and he will just look at it for a while. "What do I do with this?" he'll finally say. He'll pick up his drink, then hesitate. "Is this right?" he asks, tentatively bringing the glass towards his mouth.

When I arrived today to visit him, the aides were having a bit of trouble with him. It was lunch time, but he was refusing to sit down at the table. I got him to sit with me and we ate lunch together (i.e., I helped him eat his meal). Food just isn't as appealing to him as it once was, though he still declares his chocolate milk to be "the best drink out there." God forbid we visit him without a couple of quarts in tow. :)

Today Dad asked me, "Where's Cindy?" I'm not sure if it's so much that he didn't know me as it is that I'm looking more and more like my mother as the years pass. (I startle myself sometimes when I look in the mirror and see her instead of me. Weird feeling.) He may have thought I was her. Still, even after all this time, it makes my heart twinge a little when he doesn't know me.

New slippers.
Took in some new slippers that Sis had ordered for Dad. They were made for diabetics with extra support and some added structure at the toes. We thought it might provide him with more stability for walking. He declared them "quite comfy."

Next Friday is Memory Care's annual holiday dinner. Holiday's hold no meaning for Dad anymore, but Sis and I will be there to share in the spirit anyway.

Sorry for the somewhat sad tone of this post.

As I said, holidays are difficult.

Friday, November 22, 2013

Don't wake up with regrets

I've found it hard to sit down and write a new post for this blog because I'm still feeling sad over Christina's death. (Too young, too young to die.) Her passing was also an in-your-face reminder of how brief life is, how quickly we can lose those we love and care for. Never count on tomorrow. Always tell the people that you love that they are important to you. Don't find yourself waking up one day with the regret of unspoken words. Promise?

A couple of recent pictures of Dad for family to see.



Thursday, November 7, 2013

Goodbye, Christina

Dad and Christina.
How is it possible that the young woman I wrote about a couple of months ago here on Dad's blog, and the young woman who was killed in the parking lot of an apartment complex here in my town yesterday morning, are the same woman?

How can that even be?

Christina was one of my father's favorite aides at the Assisted Living facility where he lives. She worked in Memory Care and she took such good care of him. We loved her for that. When she took another job because it paid better, we were sad to see her go, but wished her well. How could we not? She had treated Dad with such gentleness, such caring.

She had been so kind to us, too, my sister and I. And she made us laugh. I'll never forget the time she told us about Dad asking her, this beautiful young woman of color, if she were a slave. (It was the Alzheimer's talking, and she knew that.)

"I told him, 'No, Harold, I'm a free woman'," she said with a laugh. "And it made your Dad so happy."

And now she's gone.

Gone? How, in God's name, is that even possible?

I need answers, but there are none. Only a deep sense of loss...and tears.

Christina was young (only 23), vibrant, full of life. I wish I had one last chance to tell her again how much her kindness to my Dad meant to us, how much easier she made it because we knew she was looking out for him.

I hugged her the last time I saw her. I hope she knew how very much I meant it. I hope, whatever she suffered at the end, she's now at peace.

You will be remembered, Christina, with gratitude and love. Thank you.



Wednesday, November 6, 2013

Read Rick Phelps' Words -- They're Important

This is important reading. (It's often been my contention that many of the things done by homes that care for dementia patients is actually for the benefit of family members and *not* those who have the dementia. In other words, it's for show, not therapy.) I have highlighted several points I feel are really important.


From Rick Phelps, diagnosed with Early Onset Alzheimer’s Disease in June of 2010, at the age of 57. 

Living with Dementia. I have researched this for a very long time. Every time I have to shake my head.

Where to they get these people who write these articles? Without fail every site I have seen goes into detail of what to do, what not to do, what your loved one should be doing...and on and on.

I wanted to list a few suggestions they give:

Look after your health:

They go into detail about how living healthy life styles is the very best way to prevent dementia. Really?

I like to think of myself as a somewhat healthy person, even after being in my fourth year of my diagnosis.

My life style had/has nothing to do with me being diagnosed with dementia. It just doesn't.

Maintain a social lifestyle:

This is another suggestion where it makes no sense at all. The last thing you will hear a dementia patient say is "I just love being in a room full of people" or " I can't wait for the holidays, all the kids and commotion. I just love the confusion the holidays bring."

The truth is people with dementia by far do not want anything to do with a social lifestyle. Once again, this is just what people perceive. The busier the patient is, the less they will notice dementia. Again, doesn't work.

Try to sleep well:

I have been battling sleep disorder for years from this disease. You will read that sleeping pills will help, as will no napping during the day.

From experience I can tell you sleeping pills do not work. Sleeping pills will help you if you are suffering from not sleeping. What we as dementia patients suffer with is much more than not sleeping.

It is a disease of the brain, and no sleeping pill is going to help that. Also I hear all the time, no napping. This again is wrong. You know how you feel when you are exhausted, mentally and physically exhausted?

Well, thats what it's like for a patient. If they are tired, or sleepy why on earth would it matter to let them take a nap? It doesn't. Another misnomer.

Keep active and occupied:

I especially love this one. Some think we are like little children. Keep us entertained and we will be fine.

Not true. Not even close. Some of my best, quality time is spent doing nothing. I don't have to be entertained by anyone, at any time. My brain is going 100mph 90% of the time as it is.

I don't need to do brain games, or teasers. These just make a bad situation worse. When you have a memory deficit, why would anyone think that doing something that exploits that very deficit would be good for anyone?

Self care:

This is what they say about "self care"..."Self care is an integral part of daily life and involves taking responsibility for your own health and wellbeing with the support of those involved in your care. It includes the actions you take every day to stay fit, maintain good physical and mental health and prevent illness or accidents, as well as the effective care of minor ailments and long-term conditions."

This is fine if you live in the land of Oz. "Actions you take everyday to stay fit?"

Myself, just putting one foot in front of another is a challenge. But these people want me to stay fit. When you have dementia, which is a disease of the brain, everything changes. Everything.

Maintaining good physical and mental health...this all sounds good. It's just not reality.

If I can remember how to make coffee, it's a good morning. If I can make out what my wife and I talk about in the mornings, it's a good thing.

The only real thing you remember with this disease, is that you have this disease. The one thing you wish you could forget, is the one thing you simply can't forget...

This is just an example of how out of touch some people are, yet everyday they tell you how your loved one should be reacting, or what you should do for them.

Do yourself a favor, use some common sense. That will get you further than any suggestions from someone who think they know this disease. It really will...

Are they safe?

Are they pain free?

Are they content?

These are the three things you can make sure of. All the other, is what the experts "assume"....



About Rick: 
Rick Phelps was diagnosed with Early Onset Alzheimer’s Disease in June of 2010, at just the age of 57. He lives in Coshocton County, Ohio, with his wife Phyllis June, with his family and grandchildren nearby. Rick worked in public safety for 24+ years as a law enforcement officer and an EMT for Coshocton County EMS until this diagnosis forced him into early retirement.

When Rick was given this terrible diagnosis, he saw the need for action and compassion and took his life saving skills to a whole new level. Using a platform that millions were already familiar with, including himself, he created a support and awareness group on Facebook, called Memory People. He knew there were others that had questions and needed help, as he did. That was in November of 2010. Memory People is currently over 4,000 members and growing daily. Here is their link:

https://www.facebook.com/groups/180666768616259/

Sunday, October 20, 2013

It's the little things that keep me smiling

From my last visit:



"How are you, Dad?"

"Good. And now that you're here, even better."






With all the things that an Alzheimer's brain forgets or can't wrap itself around, sometimes it amazes me what it does get. Memory Care units are lock-down units because dementia patients tend to be wanderers. At Dad's place, there are keypads at the two main doors into his unit.

As our visit was coming to a close, I remarked to Dad that I had to stop at the bank on my way home.

"You know your way out of here?" he asked anxiously, worried that I might get lost (as he does).

"Yep, I sure do, Dad. I know everything I need to know."

He looked at me in wonder.

"You even know how to punch the thing?"

I had to laugh. I didn't even know he was aware of the keypads.

And I think, for a tiny moment, he had visions of me breaking him out of the joint. ;)


Saturday, October 19, 2013

Alzheimer's: Road closed ahead

When a loved one is in the early stages of Alzheimer's, one of the hardest things for families to adjust to is how the brain can work fine one day (or one hour, or one minute), but be totally off the next. It feeds right into our human tendency to want to deny the disease: "How can he have Alzheimer's? Look, he just fixed the broken dishwasher!"

But, if you consider the nature of the disease, this is pretty normal behavior for a brain with Alzheimer's. This is a simplification, but think of your brain as a super highway, with many, many roads feeding off of it. You can get anywhere you want to go, any time you want.

Now, think of Alzheimer's as a road-work crew. (This not hard for those of us living in Pennsylvania. There's an old joke that says we have two seasons: winter and construction.) Each day the crew closes down several roads, but doesn't open any new ones in their place.

For a while, you can still find your way around. It may take you longer, but you will reach your destination at some point.

This is early-stage Alzheimer's.

After a while, though, it begins to get harder and harder to find new pathways. You meander around, back up, turn around, drive in endless circles, have a few fender benders...until you finally find a route you can take.

Or not. Eventually, it's no longer possible to get from Point A to Point B.

This is late-stage Alzheimer's.

And in-between? There are a lot of hits and misses. And as the disease progresses, of course, the latter becomes the norm.

So the next time you feel yourself becoming frustrated because yesterday Dad could feed himself, but today he won't, or yesterday he could brush his teeth, but today he can't, remind yourself of this: through no fault of his own, someone closed the road he was on, and he can't find his way back.

Be the Inn at the side of the road and give him care, comfort, and a place to come in out of the dark.

He doesn't like being lost. Would you?



Laughter and Tears: The Way of Alzheimer's

Dad was his usual funny (see the earlier post) and charming self when I visited yesterday. Half way through my visit, he asked me, "What are you doing here?"

"I came to see you," I said. "I always come to see you."

"Yeah?" He smiled. "That's good to hear."

And he didn't pass up an opportunity (he never does *grin*) to have his picture taken with a pretty lady.

Dad and Lori, the Director of the home
where Dad lives.
I enjoy sharing these funny and charming moments with you. They warm my heart, and I hope they do yours, as well. But along with the good, I have to share the bad. This is, after all, an Alzheimer's journey, and I don't want anyone to forget for a moment that my Dad (and many, many others like him) is fighting a losing battle with a horrific disease.

I tell people that I'm always exhausted after a visit with my Dad. Part of the  reason is that it takes so much energy to stay focused on his speech, to try to understand him enough to have a conversation with him. Communication is a basic human need, but it's getting harder and harder for Dad to find the words and to know how to use them. But we try. God, how we try.

The saddest part is, though, that very often he is aware of how bad his speech and thinking have gotten. That seems the cruelest thing of all, and it breaks my heart.

At the end of my visit, he said, "Well, I enjoyed our talk."

Me, too, Dad. Me, too.




Friday, October 18, 2013

Why do you sound like Jack Benny and what have done with my father?


So, it's lunch time, and Dad's lovely aide says to him, "Harold, would you like a drink?"

And Dad says, "No thanks. I hardly ever touch the hard stuff."


We're here all week, folks. Next show at 11. ;)


Dad and Kristin

Wednesday, October 9, 2013

Saturday, October 5, 2013

Twelve, Going on 81

I reminded Dad on Friday that his birthday is next week.

"Do you know how old you're going to be?" I asked him.

"Haven't a clue," he said.

"You're going to be 81."

He looked at me with raised eyebrows. "How old?"

"Eighty-one."

He shook his head again. "I don't feel 81."
We were having a bit of a bad hair day. ;)

"How old do you feel?" I asked him.

"I don't feel a day over twelve," he said.

 "Twelve?" I said, laughing. "Twelve?"

"Okay, how about thirty," Dad said, winking at me. "I don't feel a day over 30."

"Thirty I'll give you," I said. "But you can't be twelve because that would mean I wouldn't exist, right?"

He thought about that.

"Can't have that," he said, finally. "Nope, can't have that."

Saturday, September 28, 2013

Alzheimer's: It's never boring

One thing about Alzheimer's: it is never boring.

Dad's at a place where his behavior can be very unpredictable. When I visited Friday, the aides told me that he'd been very agitated the Tuesday before, angry because people weren't "doing their jobs," talking about court martials (yes, I know it should be courts martial, but seriously...who says that???), and generally being very bossy. On Friday, however, he was as docile as a lamb.

In the first video below, we chatted about little things. You can see how his speech is convoluted: sometimes he speaks with ease, sometimes he can't come up with the right words, and sometimes it all comes out as gibberish. We have long periods of silence these days, where once he would have talked my ears off.

He also fixates on a topic. It can be anything under the sun. Once it was tires. Three hours worth! Friday it was his teeth.



In the second video, one of the aides had just asked him if he wanted to go to the bathroom. He said no. She is trying to redirect him to get him to go with her and had just said, "Come on, Harold. I want you to run somewhere with me."  (Catch his use of the word "jurisdiction"! Where did that come from??)



"If I fall and faint, drag me in."

Like I said, Alzheimer's is never boring.




Tuesday, September 24, 2013

Weary Angel Bracelet giveaway!


As I've said before, caregivers are earthly angels, and too often they walk a solitary path. My painting, "Weary Angel", is dedicated to caregivers. She's tired and worn, yet she looks to the heavens: it's all about hope, and love.

Wednesday, September 25th is my birthday and I'm celebrating by offering two of these Weary Angel bracelets as prizes in a giveaway. They are made by Cafe Press for Briarwood Studio and feature the Weary Angel. If you are a caregiver, or you have a special one in your life, please enter the giveaway as a chance to win this reminder that you/they are *never* alone.

There were two reasons I started this blog: one, to chronicle my Dad's journey for family and friends that wanted to keep up with how he was doing, and two, to help raise awareness about Alzheimer's. Someday it will be as visible (and fought against) as cancer, but that day has not yet arrived.

The Daily Goodbye's companion page on Facebook has almost 1,400 followers! Sadly, though, this blog does not. *grin* If we can get the blog's number of followers up, it will be easier for people to find us through the search engines. And that's a good thing for awareness. So let's get those numbers up, shall we?

 Here's how to enter:

1. If you're not already following, please follow this blog, The Daily Goodbyes.

2. If you can't follow the blog for some reason, put a link to it on your Facebook page and ask people to visit/follow. Use this link: http://thedailygoodbyes.com

3. If you do *both* of the above, you'll get two chances at winning!

After you do one or both of the above, you must comment either here or on the The Daily Goodbyes Facebook page to let me know that you've done it. If you don't comment, your name won't be entered in the drawing.

The contest will close Saturday evening at midnight ET (9 p.m. Pacific). The winners will be announced Sunday evening.

I appreciate your help. I look forward to finding out who our two winners will be!




Monday, September 23, 2013

Birthday Wishes

"Hello, Mom!" Lynn called as she approached her Mother's table in the dining room. Her Mom looked up, her eyes squinting at the light. She'd been napping in her chair.

"Who are you?" she asked, looking at Lynn.

"It's me, Mom. It's Lynn. I came to wish you a happy birthday. So...happy birthday!"

"Don't shout at me," the old woman said.

"I wasn't...," Lynn began.

"And you're not my daughter. You're too old to be my daughter. Go away."

The old woman closed her eyes and dozed off again.

Lynn's eyes filled with tears, but she quickly brushed them away. It was hard not to be hurt when Mom didn't recognize her, but she was slowly learning to deal with it. She set the cake she was carrying on the table and made herself comfortable in one of the chairs, waiting. Other residents walked by and Lynn smiled and waved at them. Some acknowledged her; some didn't. Two residents at a corner table were arguing over who should be allowed to sit at their table with them. One was calling out for something to drink.

"Who are you?" The old woman was awake again.

"My name is Lynn."

"Why are you here?"

"I'm a friend of your daughter's," Lynn said. "I just came by to say hi."

"That's nice," said the old woman, looking intently at the cake on the table.

"What's that?" she asked.

"It's a birthday cake. I heard it was your birthday so I thought you might like some cake."

"Is it my birthday? No, it's not my birthday. If it were my birthday, my daughter would be here."

Lynn put her hand over the woman's, squeezing gently. "I bet she'd be here if she could."

The old woman reached out a finger to touch the plastic cake container.

"What kind is it?" she asked.

"Lynn told me you love chocolate cake, so that's what I brought."

The old woman's eyes grew round. "Oh, I do. I do love chocolate cake." She looked around as if to see if anybody were watching. "Maybe we could have a piece now?"

Lynn smiled. "I think that sounds like a wonderful idea," she said. They cut the cake, putting slices on paper plates that Lynn had brought with her. She gave her Mom a large piece, then shared with the other residents in the room.

"Ooooh, this is gooood," the old woman said, her eyes shining with excitement. "Best cake I've had in years."

She quickly ate the first piece of cake and asked for a second. She smiled as she ate.

"Soooo good," she said. "I bet my daughter's sorry she's missing this."

"I'm sure she is," Lynn said, swallowing the lump in her throat.

After the cake, the old woman became quiet, and soon fell asleep again. Lynn sat with her for an hour but she didn't wake.

As Lynn got up to leave, the old woman suddenly lifted her head.

"Hi, Lynn," she said, obviously pleased to see her daughter. "You missed the best chocolate cake today!"

Lynn leaned down to kiss her Mom's cheek. "Happy birthday, Mom," she whispered.

"Is it my birthday?" the old woman asked. "Well, imagine that."


Copyright 2013 Cia Williford
www.thedailygoodbyes.com
All rights reserved.


Sunday, September 22, 2013

Don't take it personally, she said

"Don't take it personally," she said.

Today, I was raising money for Alzheimer's Awareness through a raffle, asking as little as $1 for two chances at a lovely custom portrait.

To those of you who donated without even thinking twice about it, thank you from the bottom of my heart. To those of you who donated and refused to put your name in the hat ("let somebody else win"), I love you. To those who donated above and beyond, you're an angel and I'm blessed to know you.

And then....

"Don't take it personally," she said.

....there's you. The person who calls herself my friend, yet wouldn't look me in the eye when I told you about the raffle. The person who never asks how my Dad is doing, but bends my ear relentlessly about her loved ones. The one who never hesitates to ask me when her kids are selling cookies, or she's walking in some event, or the Scouts are raising money, or she's trying to raise tuition for an art class, or her friends' cousin's spouse's niece needs money to pay her bills.

And didn't I always respond?

Today, you wouldn't look me in the eye. And you didn't put a dollar in the jar.

That hurt.

When I mentioned this to another friend this evening, she said, "Don't take it personally. It will eat you alive."

Don't take it personally? This is my father we're talking about. And my cousin, Mary. And my friends Barbara, and Janet, and Evelyn, and Eleanor, and Charlie. And their caregiver children, Missy, and Mary Alice, and Sue, and Maggie, and Gail. These are all people I love, and they are all suffering because of Alzheimer's.

And I am, too, in case you hadn't noticed.

Don't take it personally?

You're damn right I will.

Sunday, September 15, 2013

Pizza *and* Bowling!

Pizza! He ate three slices.
Friday was our monthly pizza day for the residents of Dad's Memory Care (MC) unit. It started out slow, everyone quiet and a bit sleepy, but turned out to be a lovely afternoon.

MC has a new activities aide who is wonderful with the residents. She's been bringing them an assortment of new and varied activities to do and the residents really seem to enjoy them. Friday was bowling, so after chowing down our pizza, everyone headed to the living room to bowl. Even my Dad got in on the act.

In the early years of their marriage, my parents were league bowlers. They got away from it over the years, but it was interesting to see some of that come back to Dad as he watched the other residents bowl. As one resident
Critiquing the other bowlers. :)
let go of a particularly, um, not-so-good, throw, Dad shook his head. "Too wide," he said softly. Sis and I looked at each other in amazement. Another time, someone threw a ball with very little momentum, and I heard Dad next to me blowing little puffs of air at the ball as if to make it go faster.

"Do you want to try, Dad?" I asked.

"Yeah, I'll take a go," he said.

We had to help him out of his chair, but he was determined to do it. You'll see my arms in the left side of the picture below. I stayed close in case Dad lost his balance. But he did really well. He got up to bowl three times!

With all the cheering and goodhearted joking going on, it turned out to be one of the best afternoons we've had in Memory Care. It was so wonderful to see the residents having a good time.





Tuesday, September 10, 2013

Oops

Our loved ones with Alzheimer's have a tendency to say or do things that are not always socially or politically correct. It's because they are losing their filters, the things in their head that tell them (and all of us), "No, that's not a polite thing to say or do." When it happens, we often cringe, worried that someone will take offense. But you know what? They can't help saying it, and if someone is offended by words or actions that your loved one has no control over, well, that's their problem, not yours. It also helps to maintain a sense of humor. Learn to laugh when the situation is funny. Learn to ignore it when it's not. Don't stress over something that just "is."

Case in point: Not too long ago my Dad asked one of his aides (a beautiful young woman of color), "Are you a slave?" She laughed, and said, "No, Hal, I'm a free woman." My Dad beamed at her. "That's wonderful!," he said, truly happy for her. A bit later, he asked another aide, "Do you own slaves?" "No, I don't," she replied. "Good to hear," Dad said. And he really was quite happy, and blissfully unaware that his questions were inappropriate.

And speaking of inappropriate behavior, he's also been known to pat a few bottoms. We'll leave those stories for another time. :)

Saturday, September 7, 2013

Head's Up!

When my father was still functioning pretty well, Sis and I would take him out to eat lunch almost every time we visited him. Dad has always loved food, and it was a way for the three of us to do something enjoyable together. As his Alzheimer's progressed, though, it became more problematic: he'd take forever to decide what to order (even with our help), he'd make a mess of the table, he'd drop food on the floor, he'd require enormous amounts of napkins, he'd spend more time than was polite looking at other diners. You get the idea.

I hated the thought of having to cut out those restaurant meals. I wanted to delay that as long as possible because he still enjoyed them. I knew if I explained to the waitresses, etc. about Dad's Alzheimer's that the problem wouldn't be so bad. They'd be more understanding. (Well, most of them anyway.) On the other hand, though, explaining things to a stranger in front of my father seemed disrespectful (and we were always afraid the word "Alzheimer's" would scare the hell out of him  -- we never used it in front of him).

In short, we needed a way to give people a "head's up" about Dad's illness without upsetting him.

We handled it by carrying small cards (same size as a business card) that said: "The elderly person I'm with has Alzheimer's. Please be patient." We'd give them out at restaurants, hospitals, doctor's offices, anywhere we wanted people to be more patient with and tolerant of my Dad's illness. And it worked well. We didn't have to talk about Dad's condition in front of him (like he wasn't there), and people were more apt to smile at him rather than getting grouchy.

Sadly, Dad doesn't go out much anymore. But with the hope that these cards would be useful to others, I've had some printed using one of my Alzheimer's paintings on the front. (See photos below.) The benefit is twofold: the front of the card promotes Alzheimer's awareness; the back of the card promotes tolerance and understanding. A win-win!

I am making the cards available in my online shop for anyone who would like to purchase them. Cost is minimal, and you don't need many. Usually people will read the card, then hand it back to you to reuse.

I hope you find them useful.

Front of card

Back of card





Sunday, September 1, 2013

Doing a little organizing

I've posted these on our Facebook page but wanted to post them here, too, so they can be pinned on Pinterest. Sorry if you've already seen them, but we're doing our bit to raise awareness.




Thursday, August 29, 2013

Semper Fi: Always Faithful

In my last post, I relayed a cute story about Dad, who wanted us to be ready to "get away" -- just in case we should ever decide we want to go.

Oh, Dad, I want to go now.

There are times, often just minutes, sometimes days, where I am so tired I can barely move. Not physically tired, though there is some of that, too, but mentally tired, so brain-weary from stress and heartache and saying the daily goodbyes that I want to crawl into bed, pull the covers over my head, and never leave.

Get away? Oh, Dad, I wish we could. Is there somewhere to go where Alzheimer's Disease doesn't shatter lives, where family love isn't strained by the stress of caregiving, where hearts don't skip a beat (or three) every time the phone rings, where feeling happy instead of anxious -- even for just a couple of days -- is no longer a dream, but a blessed reality? Because if there is, I would fight heaven and hell to get us there.

Sometimes, people ask me, "Why do you write such sad things for everybody to read?" And my answer is, "Because it matters."

What's happening to my father is sad. What's happening to millions of others with Alzheimer's is sad. And the fact that Alzheimer's Disease is the sixth-leading cause of death in the United States and the only cause of death among the top 10 in the United States that cannot be prevented, cured, or even slowed* is more than sad -- it's terrifying.

More than 5 million Americans have Alzheimer's Disease today. How many more families must suffer before we take our heads out of the sand and DO something about it?

Oh, Dad, I want to go now. I want to run as far and as fast as I can.

But I won't. I'll stay and fight.

For you. And for others like you.

I'm not the daughter of a Marine Corps Sargent for nothing. ;)


* Statistics provided by the Alzheimer's Association (www.alz.org)