Alzheimer's Moments: The Book!

It's official.  I'm announcing the availability of Alzheimer's Moments: Memories From A Caregiver's Diary!  The book is now available from Amazon in paperback and Kindle versions.  Alzheimer’s Moments documents Mother Dear's life, particularly those poignant and sometimes humorous experiences that occurred along the way, and the challenges of being a primary caregiver.  Many of my longtime blog readers will recognize the stories in the book as I've taken most of them and polished them up with additional details.

But there is plenty more information than what's here on the blog. I decided to divide the book up into four sections.  First is my Mom's life and some of our interactions before I moved back to New York to take care of her.  This writing is all new and not covered here on the blog.  The second section spans the time that I lived with her and took on the primary caregiving role.  Third in the timeline are her years in the assisted care facility and what I observed there.  This part also includes information about her stay at a nursing home, and her eventual death.  And lastly, in the epilogue, I give a brief description of what has happened since her death.

So why did I decide to convert this journal into a book?  I keep running into people who have stories that are so similar to mine.  There is a “silver tsunami” sweeping the country as the nation’s baby boomers age.  According to the Alzheimer’s Association’s 2012 Facts and Figures, 1 in 8 older Americans has Alzheimer’s disease and the numbers are rising.  That translates into 5.4 million people afflicted, 15 million caregivers, with a cost of $200 billion a year to the nation.

Anyone who has found themselves in the caregiving role to an elderly person will be able to relate to these triumphs and frustrations.  Sometimes funny, sometimes sad, always earnest, this is a first-hand account of what it’s like to live with someone progressing through the stages of Alzheimer’s disease.

I will not be reviving my writings here given the popularity and flexibility of Facebook.  Please visit me there at Alzheimer's Moments Facebook and Like the page to follow along.  I plan on working my way through our photo albums and posting pictures that bring the book's stories to life.

Thank you to all my followers who have been so supportive of me over the years.  To my new readers, browse through the posts here on the blog to get a feel for my writing style and some of the content of the book.  I'd be honored if you decide to purchase Alzheimer's Moments.

Take care.  I look forward to seeing you on Facebook!

Final Post

It is with a heavy heart that I share with my readers that Mother Dear passed away last week.

When last I wrote, she had fallen ill and was in the hospital. She went from there to a Rehabilitation Center and Nursing Home. The idea was to get her back up to speed and back to the assisted living facility where she had been. The diagnosis ended up being a bad case of the flu. An illness from which she never fully recovered.

She did make progress over the summer, sometimes eating on her own, sometimes forming sentences ("I have to go to the bathroom"), and pulling herself along in the wheel chair where the nurses placed her in the morning. She would wander the halls and look into all the rooms. When she got to the end, an aide would turn her around and back she'd come to the nurses station.

Up until two weeks ago she was still pretty good all things considered. She had wasted away to skin and bones but was still able to sit up and take notice of the goings on around her.

The staff called on Christmas Eve to let us know she'd taken a turn for the worse. We'd received these types of calls before including that she'd slid down out of her chair and "fell". My brother went up on Monday and sat with her while I was at work.

On Tuesday a.m., he came down to get me, telling me that we needed to get up there because she was going to die based on what he'd seen the previous day. We were going to meet at his house and carpool up since the drive to the nursing home is 45 minutes. By the time I arrived at his house, he'd received the call that she'd died.

We still went up to see her and I was shocked by the sight. It sounds a bit silly but I didn't expect her to look dead. I guess I'm used to seeing dead bodies after the funeral director has restored their looks.

The funeral went exactly as she wanted it. Just immediate family, open casket, and a short service by the rector of the church. She looked great, and we put her in a purple sweater since that was her favorite color. We were at the funeral home for an hour and then followed the hurse to the cemetery. It was 15 degrees and windy, making it very uncomfortable for those that were there. (I had put on thermal underwear so I wasn't as affected!)

She now lies along side my father as they stood at the altar at their wedding.

May she rest in peace.

The Phoenix

On this Christian day of observance of the resurrection of Jesus Christ, I bring you the story of the Phoenix Rising!

Mom was doing very well on our visit yesterday.

She drifted between states of awake and sleep, showing signs of awareness when her eyes were open. She is eating and the nursing staff reports that she's able to feed herself if the food is put in little bowls that she can manage.

Next week they are going to test her ability to walk. She keeps trying to get up out of her chair and was able to stand unassisted in the shower.

We met with a funeral director this week and got everything in place. Who knows how far ahead those plans will come to fruition? We figured she had only days to live just a couple of weeks ago!

Surgery Complications

The past week has been dominated with my kidney surgery.

I made the decision to go ahead with the surgery. That, itself, was pretty uneventful on Monday. Tuesday was fine although I noted that when I sat in an upright position, I had quite a bit of pain that was relieved by lying down. It seemed like the stent they placed through the ureter from the kidney to the bladder was poking me on the insides. A stent is a thin, flexible piece of plastic they leave in to ensure that the kidney will drain and not get clogged with a blood clot as the kidney heals.

On Wednesday, I decided to keep my scheduled counseling appointment. I didn't consider that the half-hour drive would be made in the seated position. The pain started shortly after I arrived and I had to leave 45 minutes in. Then I had to drive another half hour home. The pain was excruciating the entire way home. I'm not sure how I made it.

I took a hydrocodone for the pain and ran for the couch to get in a comfortable position. The pain continued so I took another pill an hour later. Then my ureter started to spasm. And I took another pill an hour later. Then the vomiting started, caused by the pain and spasms.

By 9, I was ready to head to the emergency room. I hung in there, getting little sleep all night.

I called the doc the next morning and he prescribed an anti-spasm medicine and that has done the trick. I now await my Wednesday appointment to have the stent removed. It's a horrible procedure in its own right, but I'll be happy to see it go. This issue was on par with the agony I've ever experienced with any stone.

Once the stent is out, I should be kidney stone free (both left and right) for the first time in a decade!

All this drama put me out of the loop with regards to Mother Dear. My brother stepped in and picked up the slack. As Power of Attorney, he would have to be involved anyway.

After examining all our options, we have elected to leave her in the nursing home where she is in Vermont after they transferred her from the hospital. Even though it adds 15 minutes commute each way for us, it is practically on the hospital's property so she'll be close if anything should happen. The place in NY didn't seem very interested in talking to us, even if we could come up with the huge amount of money they were demanding up front. Disappointing.

Mom has been eating some, but still isn't doing well.

I lead a sequestered quiet life. But when I have drama, I make it worth my while!

Good News And Bad News

Today's been a three ring circus.

The latest x-rays show no bowel obstruction, her white cell count is back to normal, and now they suspect it may have been some other type of flu since the assisted care facility is now rife with gastro-intestinal issues. That's the good news.

The bad news is that she is refusing to eat. When we were there on Thursday night, my brother tried to feed her some water, broth, and jello with a spoon. As I watched and listened to him, it put me back to how he was with his daughters when they were babies.

The assisted care place did an evaluation and said they aren't equipped to handle her level of required care. She can't go back there, at least not now.

So she needed to get out of the hospital and into some place where they can see if they can get her to eat. Her Medicare provider, CDPHP, denied coverage on the first call. They said there wasn't any sense in covering rehab since her dementia was so advanced. Her doc called the insurance company's medical director and convinced them to cover her for this weekend during an eval period. On Monday, we'll know if she's getting better and will be able to feed herself, if she is willing to eat but needs help, or that she isn't going to eat at all.

Years ago my neighbor told me that her mother died from dementia two weeks after she stopped eating. Mom's doc confirmed that's common.

If she refuses to eat, it's the end. We aren't going to have anything done to keep her alive, per her wishes.

One thing I'm super stressed out about is that we'll have to go "private pay" to get her into a nursing home. They want first month plus another month security up front. That's $17,490! They charge $291 a day. Even though we have the long term healthcare insurance, which will reimburse us $249 a day, we still need that chunk of change up front just to get the ball rolling!

We're going up to see her tomorrow.

Medical Issues

Mom is currently in the hospital.

I received a call at 4 a.m. on Wednesday that they were sending Mother Dear to the hospital. On a bed check, they found her sitting on the edge of her bed and she'd been throwing up. When they tried to give her a shower to clean her up, she passed out several times. She was cold and clammy so they called the rescue squad.

The flu has been racing through her assisted living facility. It is a strain that isn't kept at bay by this year's preventative shot. The whole place is on Tamiflu to keep them from coming down with it and they are discouraging visitors.

She didn't have a fever, tested neg for the flu, and had an elevated white cell count indicating an infection. She was complaining of stomach pain so they did a CT scan. The diagnosis was a twist in her small intestine. Recommendation was to admit her, put her on IV only, and see if it would resolve itself with bed rest. Yesterday her KUB (Kidney Ureter, Bladder) x-ray looked good so they put her on clear liquids. She hasn't vomited since the first incident.

If it doesn't resolve itself, one option is surgery. However, this is VERY invasive, having to cut her open from side to side and possible resectioning the bowel.

We aren't sure if she'll be able to go back to her regular place or if they are going to move her to a nursing home. I'm thinking the nursing home based on how she looked last night. She's weak, and three days without food isn't going to help.

This incident comes after she was rushed to the hospital last week after falling down twice within an hour. I had left her from my regular visit just two hours before and she seemed fine.

Complaining of neck pain at the emergency room, they did a CT scan on her neck. They spotted a "mass" on her thyroid. I gave approval to do an ultrasound to determine what we are dealing with if any further decisions need to be made regarding her care. That has been done but I don't know the results yet.

Not good.

I go in for kidney surgery on Monday. I had stones removed from the left side last September and we're going after the right side this time around.

Happy St. Patrick's Day!

Another holiday, another party.

Mom's Activities Directors (ADs) were hard at work again yesterday. Home made Irish soda bread with butter, a horseradish dip spread atop Ritz crackers, and the usual selection of diet sodas and water were the refreshments.

Mom had her eyes open and seemed aware of what was going on although I don't think she understood it was St. Patrick's Day. Mid-way through, she asked to go to the bathroom. On our way back to our seats, she spotted a pair of unusual glasses on the table. The lenses were see-through green shamrocks. Mom put them on, smiled, and kept them on until it was time for everything to be put away.

Irish tunes blared from the little CD player, with Danny Boy played three times. One of the ADs performed an Irish dance that she'd learned somewhere along the way and did quite well. At the end, she sang an Irish song a cappella that her grandmother had sung to her as a child and that she had sung to her own children. The entire room fell silent as they listened. I have to say, she was excellent!

Mardi Gras!

I'm still here and she's still there.

Tuesday was Mardi Gras, and that meant there was an opportunity for the Activities Department to celebrate! A CD filled the room with the upbeat jazzy sounds of New Orleans. Purple, green, and gold paper masks were held in place with a thin string of elastic, hiding the residents faces from the nose up. They had cut outs for the eyes and jester-style hats. Necklaces made of colored beads and monochrome fish were draped around everyone's necks.

The Activities Director (AD) made her way around the room encouraging everyone to dance. It's a great form of exercise and I know that Mom usually participates in other dancing activities. That's no surprise since she has always loved to dance from the time she was square dancing as a teen. I remember her teaching me the "Alley Cat" and "Bunny Hop" in our living room when I was growing up.

As the AD approached us, I asked Mother Dear if she wanted to dance. The AD took my cue and took hold of Mom's hands and got her to stand. They started dancing and the AD would lift Mom's arms and twirl under.

I watched her. Light on her feet, yet her legs lacked coordination and showed signs of their age. It was her eyes that told the whole story of her current state. Open and staring ahead. Vacant. The body was moving from something basic in her brain, but the mind wasn't, her conscious mind gone.

I left the building, got in the car, and wept.

Happy Holidays 2010!

Merry Christmas, Happy Holidays, Season's Greetings and all that jazz.

My brother and I visited Mom 10 days ago for the facility's Christmas party. They served a buffet and the residents could invite two guests. The spread was similar to last year: beef stroganoff, lemon chicken, stuffing w/ broccoli, cheese mashed potatoes, macaroni salad, berry jello, and white layer cake.

When we arrived, Mom was upstairs in the beauty parlor having her hair done so she looked great when we saw her. She knew my brother but not me. He pointed to me and asked her, "Who's that?" She looked right past me. No clue.

We left before the arrival of Santa and the gift exchange. That much crazy in such a small space makes me anxious.

Last night we got a call that they had called the rescue squad to take Mom to the ER. She had a spell while they were showering her. Based on their description, it sounded similar to the mini seizures she had while here. She would be okay within 15 minutes and I mentioned that to the nurse who called. She confirmed that Mom was indeed feeling better already but they were going to sent her to the ER anyway. They have to play it safe and I understand why.

I had the option of going up to the hospital, a 45 minute drive, but the nurse said she wasn't sure that they'd even admit her and she'd probably be brought back. Given that I'd seen this before, and that she had already come out of it, I opted to have them call me if things changed.

The ER doctors diagnosed her with a UTI, wrote a prescription, and did indeed send her back last night. I called this morning and they reported that she's back to her 'normal' self this morning.

She can't really talk anymore and hasn't recognized me at all over the past 2 weeks.
It's been a long time since she knew I was her son and my name but at least she'd know me as a friendly face that was there to see her. When dementia patients are sick, they can't really tell you, so the staff watches for changes in behavior. It now occurs to me that her lack of recognition could have been due to the UTI rather than just having a bad day or following the normal progression of the illness.

Maybe she will change back to knowing me once she gets on the new med for the UTI. Let's hope!

Lady Godiva

"Lady Godiva was a freedom rider, she didn't care if the whole world looked..."

Well, how quickly we can go from having a really great day to one that isn't so good.

I found Mom sitting in the lobby asleep in a chair. She was next to a card table that had been set up so Activities Director 1 (AD1) could clip, file, and paint some of the ladies fingernails. I pulled up a chair and sat next to Mother Dear. She held the shoe and sock from her right foot in her hand. She's been obsessed with how her shoelaces are tied. They are never quite right no matter how many times they're tied.

When I placed my hand on her arm to let her know I was there, she jumped from being startled, then stared at me blankly. She was in a really heightened state of confusion.

When she finally came around, she asked why I hadn't kissed her. My brother had just told me that she'd started doing something weird with him where she puckers up, makes a smooching sound, and asks for a kiss. He wonders if she thinks he's her husband. After today, I'm not so sure. I think it's just something she's started doing.

We sat for a while, chatting with AD1, and the various residents and aides that passed by. I'm very social while I'm there so everyone stops to talk for a bit.

Mom looked at her shoe, mumbled something and started to get up. I questioned her on what she wanted and I was ignored. Not on purpose, I just think she was in her own little world. Up she got and started to leave. AD1 got up and offered her a glass of water and tried to persuade her back to the table. No luck.

I watched as she shuffled down the hall towards the activities room. I felt like I didn't exist. Maybe this is the start of what it will be like when she doesn't recognize me at all. Right now she recognizes me as someone special that is nice to her but I don't think she knows I'm her son or related to her in any way. In fact, I don't think she comprehends the concept of people being related. She hasn't asked for her mother and father in a while and that was something she did pretty consistently.

Five minutes later I found her asleep on a couch in the activities room. I went over and sat by her. She was having a lot of dreams — moving her feet, talking, manipulating imaginary things with her hands. Twenty minutes after that she woke up and started complaining about her sweater.

She was pretty quick in getting the sweater half way pulled off before I could stop her. I asked her what was wrong. I explained that removing clothes wasn't acceptable. I tried to restrain her arms and get the sweater back on. I commanded her to stop.

It was like trying to hold a cat that doesn't want to be held. They wriggle and squirm until they get away.

So Mom got the sweater off, with nothing on underneath except her birthday suit. I looked around the room, half embarrassed and half feeling helpless, to see the 25 people in the room watching the whole performance.

I told her to hold the sweater over her like a blanket. At least that covered her and kept her boobs from flopping around. I heard someone say, "Oh she does that all the time." Uh, oh.

As quickly as she had taken it off, she flopped back against the couch, exasperated that she couldn't get her damn sweater ON! I helped her put it on and that ended the burlesque show.

Then it was time for her to eat and for me to beat a hasty retreat!

Perspective

Gosh, time flies. I can't believe it was almost two months ago that I wrote about Picasso!

I've been continuing my efforts to go through Mom's stuff. I go back and forth between clothes, collectibles, and paperwork.

Today, I dropped off 20 pocketbooks (purses for those of you on the West Coast) and 10 pair of shoes to Dress for Success. It is a local charity that helps needy women with professional clothing for job interviews.

I also set aside four casual pairs of shoes and five sweaters to bring up for Mom. When I got to her place, I dropped by the office where they mark everything with her name, then continued on and joined her on the sofa where she was sitting. Her finger nail polish was chipping so I did her nails. I think the other women (residents and staff) are a bit envious since they always joke about me doing theirs, too.

As the polish dried, one of the aides came down the hall with the clothes so she could hang them in my Mom's closet.

Me: [Excited.] Oh, look! All these new clothes are for you!

Aide: [Sits on couch next to mom, displaying items one at a time.] Look at all these sweaters!

Me: I just did her nails. Pretty pink!

Mom held up her hands and grinned.

Aide: They're beautiful! I'm going to put all these nice new things in your closet. They're all for you!

Mom: [Bottom lip quivering.] I'm really lucky.

At that moment, she thought she was. And my bottom lip was quivering, too. (The tears are rolling down my face as I type this.)

Picasso

Part 12 In A Series

All my life I've come up with nicknames for people — mostly for those who I don't know their real names. In the last installment, I wrote about The Bugaboo. Today I introduce you to Picasso.

Picasso came to the assisted care facility over the summer. She had been in a couple of places before where they said she stayed in bed and resisted all efforts to get her up and about.

Here, she has improved greatly. The staff is able to get her up, dressed, and out amongst the other residents.

She's got some quirks, and can be a real Dr. Jekyll and Mrs. Hyde. She likes to attach herself to other women in the place and I've noticed this behavior with my Mom. Picasso will sit next to them, caress their arms, tenderly kiss them on the shoulder, etc. She also talks about going home and asks them if they'll come home with her. I don't know if she is a lesbian or just friendly. It doesn't really matter since no one is going anywhere.

On the other hand, she can get agitated and is quick to swear. She likes the term "sons a bitches." One day she thought, courtesy of her paranoia and dementia, that they'd forgotten her for lunch. (I checked and she'd eaten.) But she went on and on about how those sons a bitches had forgotten her, she was going to take care of them, etc.

Now, you might be thinking, why have I chosen the nickname Picasso rather than Dr. Jekyll and Mrs. Hyde. Well, kittens, I'm much more clever than that!

It turns out that, like Picasso, she likes to "paint" shitty pictures. Let's just say she has a fondness for her own fecal material and likes to be creative with it.

Also see:
Part 1: The Klepto
Part 2: The Slapper
Part 3: The Baby Mama
Part 4: Socks
Part 5: The Jackrabbit
Part 6: Gidget
Part 7: Twinkle Toes
Part 8: Pittsburg and Tex
Part 9: The Bird Flicker
Part 10: The Imp, The Lesbian Haircut, and The Bitch
Part 11: The Bugaboo

Dementia Bocce

In a previous post, I wrote about the game of Dementia Twister organized by one of the Activities Directors (AD) at my Mom's place.

Well, they were at it again yesterday with a different twist.

Dementia Bocce!

This wasn't as popular with the residents as Twister had been but pretty ingenious nonetheless.

Four residents participated, each with moderate dementia. One in a wheelchair, one that uses a walker, and the remaining two able to get around without assistance. There weren't as many non-participating residents interested in watching the game as before either. Perhaps the large plastic Twister mat was something that drew more attention.

In the bocce game, the AD gently tossed a golf ball into the center of the play area. A portion of the lobby in front of the windows that look out onto the courtyard is kept clear of people, chairs, and sofas. (Maybe fire code regulations?)

Each player was given two croquet balls of a different color to roll towards the golf ball. The closest person would win that round. It was a bit like watching bowlers. Some roll their ball smoothly, others toss, and some drop. Luckily the floor isn't even so those balls that dropped rolled, too.

I noticed that the AD had made two teams of two each. I think that was to make sure there was more chance of winning since she would announce the closest as the winner and then include the teammate as winners of the round.

During the game, there was some mental stimulation as well.

Activities Director: You've got green balls. What things outside are green?

It was sad that Resident 1 looked directly outside at the courtyard but couldn't name anything that was green.

Activities Director: [Helping.] Well there's the trees, the shrubs, the flowers.

When it was another resident's turn:

Activities Director: You've got yellow balls. What things outside are yellow?

Resident 2: The sun.

Activities Director: Correct! The sun is something outside that is yellow!

All the while, Mom sat in her chair and seemed oblivious to all the activity occurring 10 feet in front of her.

I was more invested than she was, saying encouraging things like "Oh, that one is close!" and "Great job!"

Annual Clam Steam

At the end of summer, Mom's place puts on a clam steam for the residents and they can invite two guests.

My brother and I went up yesterday to participate. Last year, we didn't go because things were still new and we didn't know any of the other residents or the staff. Now it seems we know everyone, including some of the other families, so we're social butterflies!

We drove up and parked in the lot visible from the outdoor tent they'd had constructed for the event. When we got out of the car, Mom recognized us immediately and waved. As we approached, she pointed to the car, knowing it was her little red car.

The weather was a bit problematic for the older folks. It was beautiful and the sky was full of large fluffy clouds. Unfortunately, when the sun was out it was too hot. When the clouds moved in the way, it was too cold. Mom is very sensitive to temperature so this constant changing from hot to cold made her antsy. She kept getting up, not knowing where she was going, but knowing she didn't want to sit at the table anymore. We tried to keep her jacket on/off but that wasn't working.

They started by serving Manhattan clam chowder, followed by steamed clams (I had two dozen!), then the main meal of boneless chicken breast, ribs, corn on the cob, and potato salad. Dessert was a slice of watermelon or cantaloupe. Mom ate some of the Chex mix before dinner but didn't touch a bite of anything else. Usually she cleans her plate.

There was entertainment, too. A guy played the banjo and guitar, and sang classics like "King of the Road" which I sang along to Mother Dear.

Everyone commented again that my brother and I look like twins. Of course, him being 10 years older, he enjoys reinforcing this. I, on the other hand, make sure I remind everyone that I'm the younger brother.

It started at 11 and we walked Mom back to her room at 1. She laid down on the bed and was fast asleep.

Turned out to be a good day.

It's A Wonderful Day For A Ride

Some places are more sophisticated in how they deal with folks with dementia "escaping" the facility. I toured a couple that have these residents on a separate floor accessible by a password-controlled elevator.

At my Mom's place, where there is a mix of dementia and non-dementia residents, those that need to be monitored have a bracelet on their right wrist that sets off alarms at all the exits. Most of the time, when they leave, they don't get very far before someone on the staff responds to the alarm and reels them in.

A new resident, though, is fast on her feet. She's relatively young at 69 and is constantly on the go, pacing the halls and rummaging from room to room.

I heard that she'd gone out the front door and took a dump on the bench out front before she'd been apprehended.

On Sunday, while my brother was visiting, there was another kerfuffle. As my brother was preparing to leave, he heard the alarm sound. By the time he'd gotten out the door and in the parking lot, two attendants were pulling the aforementioned dumper from the passenger's seat of his Jeep!

There was no dump in the vehicle and he's decided to lock his doors from now on.

Overheard

A few tidbits I overhead at the old folks' home yesterday:

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Resident 1 is walking through the lobby and passes Resident 2 who has her sweater over the arm of the chair in which she is sitting.

Resident 1 (Severe Dementia): [Reaching towards Resident 2's sweater.] Is that my sweater?

Resident 2 (Mild Dementia): [Brushing Resident 1's hand away.] No. It's mine.

Resident 1 continues walking down the hall.

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Aide 1 goes to take Resident 3 to the bathroom, who resists, causing Aide 1 to take her by the elbow to guide her.

Resident 3 (Moderate Dementia): What're ya doin', ya damn fool!

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Ten minutes later, Resident 1 makes another lap on her wandering walk...

Resident 1: [Reaching towards Resident 2's sweater.] Is that my sweater?

Resident 2: [Brushing Resident 1's hand away.] No. It's mine.

Resident 1 continues walking down the hall.

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Aide 1 wheels Resident 4 into the lobby and parks her wheel chair by the nurse's station.

Aide 1: [In a cheery voice.] There ya go!

Resident 4 (Moderate Dementia): Rotten old bitch.

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Ten minutes later, Resident 1 makes another lap on her wandering walk...

Resident 1: [Reaching towards Resident 2's sweater.] Is that my sweater?

Resident 2: [Brushing Resident 1's hand away.] No! It's mine! Now move along!

Resident 1: Well you don't have to be so nasty about it.

Resident 1 continues walking down the hall.

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Resident 5 is talking with Resident 6.

Resident 5 (Moderate Dementia): Sometimes I just want to go home and die.

Resident 6 (No Dementia): I know.

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Ten minutes later, Resident 1 makes another lap on her wandering walk...

Resident 1: [Reaching towards Resident 2's sweater.] Is that my sweater?

Resident 2: [Brushing Resident 1's hand away.] No! It's mine! I've told you that before!

Resident 1: I know. Sheesh.

Resident 1 continues walking down the hall.

Aloha Oy

After arriving at my mother's assisted living center yesterday, I started my usual search for her in the Activities Room, and walked into a luau!

They were celebrating Hawaii's admission to the U.S. as the 50th state.

I've written before that I am always impressed with the creativity of the Activities Directors given that they operate with a near-zero budget. Hardly an opportunity goes by for them to celebrate something. When you have 50+ people to keep entertained and engaged, you look for inspiration wherever you can.

They were just finishing up the dance contest when I walked in. The young groundskeeper was participating and helping to lead the dancers. One lady was awarded a special paper crown as Queen of the Dance and she was just delighted!

Everyone had a lei of silk flowers around their neck and those dancing were wearing grass skirts. Don Ho was singing from the portable CD player, streamers hung from the ceiling, transparent plastic sheets with large palm trees hung in front of the windows, and Hawaii-themed graphics adorned the walls.

Rounding out the decorations were two unlit tiki torches, and a portable steel fire pit in the center of the room with yellow, orange, and red construction paper cut to look like flames placed inside.

The food served was a tropical punch and fruit kabobs. Each of the residents was given a napkin with a large, brightly colored tiki face as a parting gift.

I complimented one of the Directors, and she told me that they used to have a big tiki hut that they'd built years ago. It was made of paper bags that the residents had made vertical cuts in to resemble thatch and then assembled into a small, table-top hut.

Mom sat with her eyes closed most of the time. Even when her eyes were open, it seemed she had no clue that there was a party going on and that the place was decorated. She sipped the punch through a super-skinny straw so at least she enjoyed something.

Top 50 Online Resources For Families Coping With Alzheimer's

Rachel D. tipped me to a blog post "Top 50 Online Resources For Families Coping With Alzheimer's" that mentions this blog.

I am really, really honored. Thank you.

For my readers, bop on over and see if any of the other links interest you!

Resident Update

Here's an update on the characters previously mentioned here on the blog:

The Klepto
The Klepto fell and was hospitalized. She isn't able to feed herself any longer so she has been moved somewhere else. I asked the staff how much loot they found when she was moved out. Surprisingly little!

The Slapper
Slapper went downhill fast back in January. After falling, she died in the hospital shortly thereafter.

The Baby Mama
Same as Slapper.

Socks
Socks still bumbles around in those white socks with gray bottoms. She is declining slowly. She always has a smile for me but is generally crabby to most everyone else.

The Jackrabbit
The Jackrabbit stays in his room after being physically threatened by one of the dementia-stricken male residents (Houdini).

Gidget
Gidget has become less interactive with the group. She had been talking when they were playing Bingo etc. but now is quiet in her participation. I would hear her humming to herself but that has stopped, too.

Twinkle Toes
Twinkle Toes likes me. But, she doesn't like my brother, sneering at him and imitating his laugh with a cackle of her own. I've seen her brother visiting a couple of times in the past month so that's good. She is silent, and you think she's isn't capable of talking, until one of the other residents rubs her the wrong way. Sternly warning, while shaking her clenched fist, "Get away from me, you bitch, or I'll knock you up side the head!"

Pittsburg and Tex
Pittsburg stays in his room most of the time watching television. The situation with Tex is a blog post I have yet to write.

The Imp, The Lesbian Haircut, and The Bitch
I never see The Imp.

The Lesbian Haircut and my brother have become fast friends and he always invites her to sit by him when he's there. She still wanders around lost and seems to be rapidly losing abilities. She was given a little carton of milk with a straw the other day and didn't know how to drink it. Then she was given a small root beer float (it was Western-themed Day!) with a spoon and didn't understand that, using two of her fingers to fish out the ice cream to eat.

The Bitch and I haven't had any negative run-ins. I found her crying in her wheelchair in the hallway one day last week. I asked if there was anything I could do, get for her, or take her anywhere that would help. She said "No" but seemed to feel better that someone had acknowledged her and asked. Her daughters Bruisilla and Jihad Jane are around quite a bit and aren't nearly as scary as first impressions would lead you to believe.

That's the update for now. With so many that have passed away or moved on, there are a whole slew of new folks I need to tell you about. There's The Fright and many more!

Happy 81st!

Thursday was Mother Dear's 81st birthday.

I've given up bringing anything of sentimental value since the concept would be lost on her. I used to bring fresh flowers every week until I realized that she doesn't spend much time in her room and generally doesn't even know she has a room.

Same thing for birthday cards. She doesn't understand them, and once placed in her room, are never acknowledged again. They're barely acknowledged when initially presented to her.

When I arrived, all of the staff were smiling and quick to point out that it was Mom's birthday. They said she'd had a great day so far. Unfortunately, she didn't recognize me and couldn't follow my explanation that it was her birthday. When I told her she was 81, she furrowed her brow as her brain failed to process the information.

We had a pleasant surprise this year. While I was there, her brother came to visit. He tends to stay away because it bothers him to see her that way and it reminds him of what may become of him. Too bad since one reason we picked the facility we did was because it is five minutes from his house.

He's 78 and has all his wits about him so I think he takes after his mother (my grandmother) who was mentally aware up until she died. It was my grandfather that had dementia and it seems my mother has taken after him.

He brought a card and a newspaper clipping from when she was 9 and he was 7. They were recognized for perfect attendance at school that year. I suppose it helps when your mother is the teacher in a one-room schoolhouse!

It really is a shame that her brother didn't visit more when she could have recognized him. She didn't know him on Thursday, and I know she would have been thrilled to see him had she known. She would cry and wish for visits when she was still here at home with me. That was when she was in her mid-stages of dementia when she would have known him but immediately forgotten that he'd visited once he left.

For where she's at in life, location, and the disease, it was a pretty good day.

"The New American Family"

I spotted this link over at A Single Man. The story of dementia really tugs at the social norms we've been taught over the years. More and more of us will be personally affected.

Dementia Twister

I arrived to quite a spectacle.

Plopped square in the middle of the lobby was a mat from the Twister game surrounded by a bunch of people in wheelchairs. WTF? I thought, "Now this is going to be interesting."

Mother Dear was seated against the far wall so I grabbed a spare chair from the chapel and took it over so I could sit next to her. She was about the same, sleeping sideways in the chair, and I pulled out my crossword puzzle. Although I was sure there was going to be entertainment considerably more fulfilling occurring in front of me at any moment.

In came our bubbly Activities Director (AD), she of the newfangled iron ruse. I called over to her that I should have figured she was the one behind the whole scene.

And the scene grew. More residents arrived, stopping out of curiosity. It turned out to be the most well attended game I've seen take place the entire time I've been visiting.

Now I have to say that the job of AD takes a whole lot of patience and just as much ingeniousness. How do you keep 50 or more people entertained for 8 hours a day? Then think about how they are in various levels of mental capability and an equally wide variety of physical capability. I give them credit.

It turns out the game was "Pitching Pennies." The residents all got 3 pennies and she would go around the circle and spin the dial. When it landed on a color, it was up to the resident to toss their pennies one at a time to see if they could get it to land on any of the correct color dots. It was something easy, entertaining, and they could all play at whatever level of health they were at. The AD provided lots of instruction, coaching, assistance, and commentary throughout the game.

I know there are a few readers here that work in assisted living centers. This is a great idea. Easy to execute and popular, too!

The Bugaboo

Part 11 In A Series

All my life I've come up with nicknames for people — mostly for those who I don't know their real names. In the last installment, I wrote about The Imp, The Lesbian Haircut, and The Bitch. Today I introduce you to The Bugaboo.

The Bugaboo moved in around Thanksgiving of last year. She gets along well with my Mom. She's suffering from dementia; she gets the gist of what's going on around her but doesn't understand the full story. I'd guess she's in her mid 70's and just slightly better at reasoning than Mother Dear.

Her most obvious feature is a pointed nose. It's her ears, however, that are the most functional. She can hear a conversation from across the room. It gets her into trouble because she can't help but to go over and put her nose in the other residents' business.

With so many people living in close quarters, many of the residents get irritated rather quickly if their personal space is invaded. And The Bugaboo has earned her fair share of "Get away from me" and "Go somewhere else" comments. It doesn't seem to hurt her feelings. She just wanders on to the next bit of misadventure she can find!

The staff has given her the task of folding clothes. This helps to keep her occupied and out of trouble. One of the Activities Directors (AD) decided that it would be a good idea to get an old iron and cut off the electric cord, and a table top ironing board in order to extend the amount of time she spends doing the clothes. The longer she's kept busy, the better for her and everyone else.

After hearing them all talk about it for a month, yesterday was the day the setup arrived.

AD #1: C'mon, Bugaboo, it's time to work on folding the clothes. Ya gotta earn your keep around here!

The Bugaboo: I don't like the way you're talking to me. Are you trying to show off?

Ha! I remember hearing the same thing from my mother when I was growing up.

AD #1: They aren't my clothes. Mine are at home. These are your friends' clothes.

The Bugaboo wasn't deterred and started folding the clothes and placing them on the table. Activities Director #2 came in with the iron and ironing board, set them up on the table, and asked her to iron the clothes before she folded them.

There wasn't any questioning, and The Bugaboo set to work. Then the light bulb went off...

The Bugaboo: Where's the electric cord on this thing?

AD #2: Oh, that iron is battery operated. It doesn't need a cord.

Hmmm, I thought, that was pretty quick thinking! The Bugaboo was satisfied and went back to work. The light bulb went off again...

The Bugaboo: [Pointing to the remaining stub of the electric cord.] What's this thing for?

AD #2: That's the antenna. The iron uses it to get the charge from the batteries.

That seemed plausible to The Bugaboo and she went back to the task at hand. The light bulb flashed back on again.

The Bugaboo: [Furrowing her brow.] How come this iron isn't hot?

AD #2: It's child proof! It's the latest technology so kids don't get burned!

Damn, this story was getting better and better! I started to laugh and had to cover my face with the newspaper so I didn't spoil it.

The high-school-aged young man came in to offer the residents their afternoon snack. "Ginger ale, cola, or water," he said over and over, like a flight attendant. He was offering a couple of shortbread cookies, too.

As he worked his way down the opposite side of the room, The Bugaboo started going down the same line of questioning. This time, AD #2 spun the tale wider and deeper. She talked about all the scientists involved in creating these newfangled devices, how expensive they were, etc.

Snack boy continued on from one person to the next, but he was listening, and his interest was peaked about this fantastic new iron. We all saw it happening, and as he turned around to ask more about the iron, everyone began to laugh. He blushed. AD #2 was so convincing, he'd bought into the story hook, line and sinker.

AD #2: You oughta know better than to believe anything you hear around here at The Bullshit Hotel!

Also see:
Part 1: The Klepto
Part 2: The Slapper
Part 3: The Baby Mama
Part 4: Socks
Part 5: The Jackrabbit
Part 6: Gidget
Part 7: Twinkle Toes
Part 8: Pittsburg and Tex
Part 9: The Bird Flicker
Part 10: The Imp, The Lesbian Haircut, and The Bitch

"Where's My Wanda?"'s Roommate Died

I just found out that Where's my Wanda?'s roommate died last week. (See previous post.) Apparently all of her yelling and chanting never really bothered the roommate; the staff wonders who they'll ever find that can put up with it.

Happy Easter

Happy Easter to those that celebrate it.

The woman in the room across the hall from my Mom's has a constant chant that she yells:

"I love my God, and He loves me! Yes He does!"

Then she blurts out the name and address of the church she's attending in her mind. I have a feeling this must be something she used to say a lot in worship services. I hope that her faith is giving her some strength through her dementia.

Her declarations are in between her similar chants:

"Harry! Where's my Harry?"

"I love my Harry, and he loves me! Yes he does!"

"Wanda! Where's my Wanda?

I don't know who Harry and Wanda are, but Harry doesn't fair so well in other things she yells out!

The Bitch: Act II

When last I told you about The Bitch, we were left to wonder if she deserved sympathy from being ignored or scorn for her nastiness.

The picture is becoming clearer.

Nurse: I gave her a piece of gum and she called me a tramp!

My brother had an episode with her today.

The setup was the same as my experience. The Bitch was in a wheel chair by the courtyard windows in the lobby. My brother was against the opposite wall, facing her, with my mother seated to his right.

The Bitch began to stare at him and he tried to ignore her. She used her feet to pull herself towards him, ending up facing him with their knees about a foot apart.

The Bitch: [Loudly.] What are you doing here?

Brother: I'm visiting.

The Bitch: [Even louder.] You're an idiot!

I laughed when he told me the story. It reminded me of Betty Davis giving it to Joan Crawford in Whatever Happened To Baby Jane?

The floor supervisor, about five feet away, began to giggle. We have a great relationship with her.

Brother: Are you laughing at me?

The Bitch: Of course she's laughing at you. You're an idiot!

Floor Supervisor: [To my brother.] You ain't seen nothing.

If she keeps that up, it won't be long before she's asked to leave. The other residents, who don't suffer from dementia, won't accept it. The room my mother occupies was made vacant by a man who had become abusive to other residents and he was given 30 days notice.

Both of The Bitch's daughters were in to see her the other day. Daughter #1 is a big-boned woman, a farmer or trucker type, and looks like she could seriously kick my ass if I so much as looked at her sideways. Daughter #2 looks like Jihad Jane (above).

So we've got Bruisilla and Jihad Jane running around the place.

The Imp, The Lesbian Haircut, and The Bitch

Part 10 In A Series

After losing three residents in January, three new residents have arrived. Two with severe dementia, one with a shitty attitude!

Newbie #1: The Imp
She is in the last stages of Alzheimer's. Her husband was taking care of her at home and their family had come to the conclusion that he couldn't do it anymore. Both were going to move in, where he could still watch over her, but that the daily chores of food prep, laundry, bathing, etc. could be handled by the staff.

Two days before they were to move, he went to a doctor's appointment and they found something that he needed an operation for...it was minor, and they would need to postpone their move by a week. His operation was on Friday, and he was dead on Saturday.

So, the lady has moved it and now has to adjust to new surroundings and the loss of her husband/caregiver.

She's a bit of an imp and they expect some trouble from her. She was in the activities room and approached Gidget who was asleep on a sofa. She put her face about one foot from Gidget's face and stared. With no response, The Imp placed her index finger on the bridge of Gidget's nose and zoomed it down to the tip. And away she went, leaving a startled woman who grumbled about the affront and nap interruption.

Newbie #2: The Lesbian Haircut
She seems quite young, I'd say late 50's, with dark hair that is about 25% gray that is cut in classic "older lesbian" style.

It is her acclimation period and she was walking the halls and going in circles in the lobby while I was there on my Thursday visit. She kept saying that she was expecting someone that was going to bring her things to her. On the surface, that sounds about right, but she didn't even know she had a room let alone where it was, when one of the attendants was speaking to her. I think this was her reaction to being alone and perhaps this is what she had been doing before she arrived.

She was definitely confused and it made me think of how my mother must have been when we dropped her off and left her for two weeks. (That was the advice of the staff, and I understand it's pretty much standard operating procedure.) Alone in a strange place with a bunch of strange acting old people.

Anyway, the girl came around with the cart to offer drinks (cola, ginger ale, or water) as they do at 3 in the afternoon. When asked if she wanted a drink, the woman replied "No." But she wanted drinks for three other people whose names she gave -- perhaps her children? When told that those folks would have to come and get their own drinks, she quickly looked around then asked for the drinks and replied again that she didn't want anything for herself.

Newbie #3: The Bitch
First, I know I shouldn't call anyone a 'bitch' let alone someone in this situation, but you'll see why in a bit.

Thursday was her first day. She is confined to a recliner on wheels because she isn't steady on her feet.

As I sat with Mom along one side of the lobby wall, this lady had been placed in her chair directly in front of me along the windows looking out on the courtyard. There were about six residents in chairs and the nurse's station was to my left where there is a lot of activity of aides and attendants.

The woman starts in, "I need help!" She repeated. And repeated. And repeated. Each time getting louder. The attendants pretty much ignored her, as I have a feeling she'd been doing this all day.

I've taken to doing the crossword so I just kept my nose buried in that and ignored her. It puts you in a weird situation where even if you wanted to help, you really can't.

"I gotta go to the bathroom," she said as she upped the ante to get some attention. She repeated. And repeated. And repeated.

She takes off one of her shoes and flings it toward me. "Can't any of you assholes hear me?"

That's the thing with dementia. No matter how many times you pay attention to someone, or how many times you explain that they aren't allowed to get out of their chair for their own good, they just keep it up and keep it up.

It's a bit of crying wolf. The time when she really needs help no one will be paying attention.

Perhaps she should be in a nursing home where she could have more constant care instead of this place where residents are expected to be able to live with guidance but not constant monitoring.

Part 1: The Klepto
Part 2: The Slapper
Part 3: The Baby Mama
Part 4: Socks
Part 5: The Jackrabbit
Part 6: Gidget
Part 7: Twinkle Toes
Part 8: Pittsburg and Tex
Part 9: The Bird Flicker
Part 11: The Bugaboo

The Schnoodle

The administrator of the facility bought a Schnoodle (Schnauzer x Poodle) puppy just before Christmas. It is the cutest little thing you ever did see!

She brings it into the assisted living center a couple times a week and the residents get to hold it on their laps, pet, and cuddle it. It's amazing how everyone, including me, perks up when the dog is around.

I know that pet therapy is a good thing and I'm happy for this little pooch. I'm sure Mom misses our cats and this gives her a great substitute.

Alzheimer's Got Your Tongue?

Yesterday was a pretty good day with Mom, although she slept almost the entire time I was there. She was sitting alone on a love seat when I arrived so I sat down beside her. Now, on my way to visit, I stop at the local convenience mart and pick up a USA Today newspaper and do the Sudoku and crossword puzzles during my visit.

My brother reported that one of the residents we've come to know and befriend asked if Mom was talking to him that day. It confirmed what we've noticed: she is increasingly quiet as it becomes more and more difficult for her to form the words to express her thoughts. She used to get frustrated, now she barely tries.

I also found out that there was another death. This time it was The Baby Mama. It is so sad that these folks are there, then not. I guess that's the nature of death.

Mom's Good But Death Is All Around

I've been out of commission for the better part of three weeks. A sinus infection has taken hold, causing constant headaches and fatigue.

In the interest of resting and keeping the contagion under wraps, I stayed away from Mom's place and missed three of my regularly scheduled visits. All the residents are coughing and sniffing, and it's likely that I picked up my illness from them.

Last Friday was my first visit in a while. I covered for my brother who couldn't make it that day.

Mom was coherent and showed incredible signs of complex thinking. When I got there, she remarked, "I don't know why I don't usually know you when you are here." It was good news that she knew me, and also interesting that she knew on some level that she hadn't know me on previous visits.

My brother had a good day on Sunday and I had a similar time yesterday.

A couple of weeks ago, she complained about a belly ache and I got her some Mylanta from the nurses. A few days later, she told my brother her tinkler hurt. Instantly we thought of a urinary tract infection (UTI) and considered that was affecting her spacey behavior.

I stopped by the nurses station to find out what the results of the test were. Since she had been so good, I was expecting them to confirm the UTI and that she was on antibiotics. Nope. The test was negative and no additional pills.

While we were speaking, I inquired about a couple of residents I hadn't seen in a while. The Slapper had been confined to a recliner because she had fallen and was increasingly unsteady on her feet. It was clear that she was going downhill fast. I learned that she passed away.

Another woman, who had only been there a few months, has also passed away. She was completely sane and I had talked with her at length in the recreation room. She was outgoing and will be missed among that little community.