Category Archives: alzheimer’s

Top three things NOT to say to someone visiting their loved one in a nursing home

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There have been numerous occasions when I have returned to my car in a furious state after a visit to see Mom (Little Red Riding Hood) at her senior living facility when a staff member said the wrong thing.

I don’t think anyone ever intentionally means to say the wrong thing. Honestly, I don’t think most staff members in these facilities realize the impact that their comments can have when every emotion we have is running at full tilt.

These unintentional slips happened much more often before I started volunteering at Mom’s place every Thursday afternoon to facilitate a Memories in the Making watercolor art class. Volunteering regularly has helped me get to know the caregivers and to be much more zen during my visits. However these slips still happen once in a while, and they still make me want to scream.

Top three worst things to say to someone visiting their loved one in a nursing home:

#1: Are you leaving already?

Really? I almost gave a receptionist a black eye one time for this one as I was signing out.  Do you realize where you work?  And that sometimes it takes everything in us visitors just to show up and see our loved one in a facility where everyone has dementia and they won’t be getting better?

No matter how nice the place is, there will always be that weird sterile smell and that cloud of heavy, stale air that hits us right in the heart as we pass through the doorway. You’re probably used to it because you work there, but I have to take a really deep breath and swallow hard each time I punch in the security code that leads me to the other side. Then as I walk the halls to look for Mom, all those blank stares, sideways smiles and random mutterings punch me right in the gut, one after another. And no matter how many times I experience it, the bottom of my stomach falls out each time I realize that Little Red Riding Hood has no idea who I am as I reach for her hand.

So yeah, my visit might be short every now and then, but I’m there. And if you know what’s best for you, smile nicely and tell me to have a great day.  It will be much safer for you.

#2:  I haven’t seen you for a long time.

You’ve got to be kidding me.  I find it hard to believe that your training manual doesn’t somewhere remind you that those with loved ones in a such a facility are already lugging around an extra fifty pounds of guilt, and that it would be best that if you don’t have anything nice to say, that you don’t say anything at all.  Little Red Riding Hood herself taught me that one many years ago, and it certainly applies here.

We’re all feeling guilty that we don’t come visit more often, so why remind us? Plus, it’s probably better for your business model to make family members feel good when they visit rather than bad, no?

#3  Wow, your Mother seems young to have Alzheimer’s.

This one also applies to anyone talking to someone who has a loved one with Alzheimer’s. This is not what we want to hear — ever.  No matter how genuinely supportive your intent, keep this comment to yourself.  When you have Alzheimer’s on the brain as much as most of us related to it do, we don’t want to think about the age of onset versus genetics piece of this frightening Alzheimer’s puzzle.

Trust me, this thought plays over and over in our head already and scares the heck out of us. It’s what bonds us Alzheimer’s kids while we’re there to visit as we exchange sad little half smiles with each other as part of our code.  We work hard to erase the thought — especially while we’re trying like hell to remember all those numeric security codes you make us remember to get through each door.  So we don’t need you to remind us.

Don’t get me wrong, the place where Little Red Riding Hood lives is wonderful and I feel very fortunate that she is safe and well cared for.  I have made many friends with the people who work at Mom’s place, many whose smiles warm my heart when they remember my name and  tell me stories about my sweet Mom.  Volunteering there each week has given me a new respect for people with enough compassion to serve this population with all their hearts.

This further supports my theory that these slips are most likely truly unintentional.

At any rate, it never hurts to be reminded of what not to say.

15 things I’ve contemplated writing about but haven’t.

IMG_4785I’ve been in a slump.  I haven’t been able to write a decent post this last couple of weeks to save my life.  Lots of thoughts but I haven’t been able to get anything down. So, in no particular order, here are fifteen things that I have contemplated writing about but haven’t.

1. Sunrises in Colorado this time of year which are downright breathtaking.  (Clone the other day when he saw one out the back windows before school said “That’s some Lion King looking stuff going on out there.)

2. All that I’ve learned about supplements that can help with bruising.  I was going to call the post “Tips for my Bruising Bedfellows.”  (Since I get a new bruise every fifteen minutes.  Oh, and Arnica rocks.)

3.  The news on my Rice Krispy knees. (Doc says it’s arthritis in my knees which is common and the sound probably wont’ ever go away (YUK) but some exercising and supplements might help.)

4. The wild weather extremes we’ve had in Colorado with fires and flooding.  (Good thing global warming is totally a hoax.)

5. How much I have learned about ADD  these last few weeks and how brains in people with ADD are wired completely differently. (Found some experts and it has been eye opening. Oh, and it’s very genetic.)

6. My growing desire to quit my marketing career and work at the Container Store. (For real.  My gig is sucking the life out of me molecule by molecule.  I’m over it.)container

7. My new book idea about 25 Suburban Women I Want to Punch in the Face. (The Container Store would actually be a great place for gathering book material now that I think about it.)

8. How weird this weekend is going to be for me.  (Sunday is mom’s birthday and anniversary of my sister’s death (same day – yes that’s messed up)_ and the Alzheimer’s Walk is this weekend too.  It will be the type of weekend when I go from laughing hysterically to crying hysterically at the drop of a hat and frighten onlookers unaware of my tendencies.)

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9. The strangeness of celebrating my Mother’s birthday with her when she has no idea who I am, much less that it’s her birthday.   (Don’t make me go.  *&^%#@!! Ugh.)

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10. The fact that  I’ve been eating and drinking much better (most days) since I started working with a personal trainer. (We’ll see how much longer I can afford her but I’m starting to really notice a difference.  Luckily I hear Container Store pays well.)

11. How cool my new, free to-do app called Wunderlist is.  (It’s free and it saves me from rewriting all my lists 200 times a day.  Probably an ADD tendency.)

12. The intense waves of homesickness I still get sometimes even though I’ve lived away almost ten years. (Not sure that ever goes away completely.)

13. How weird women are. (Except for me of course.)

14. How bizarre it feels to have to kids in high school and to not be needed to drive them to and from school.  (Is there such a thing as post-middle school depression?)

15. How Steno pads and kitchen scissors scissorremind me of my Mom.  (And will probably randomly make me cry this weekend because they’ll make me think of my Mom, which will then make me think of my sister and how much I wish she could go visit Mom with me on Sunday.)

That’s all for now folks.

Happy Hump Day.

“Sorry honey, I think you have the wrong mother.”

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Little Red Riding Hood’s coat now hangs in her closet.

Before my long weekend get-away, I visited Little Red Riding Hood (aka Mom) in her dementia facility home last week.

My usual feelings of dread – and the pit in my stomach – had been building up as I anticipated my visit. I knew that once I saw her, the pit in my stomach would begin to dissipate into the smaller, more manageable pit that’s taken up permanent residence. Sweet Clone (my youngest son) offered to accompany me.  Having someone with me every now and then takes a little of the sting out of my visits.

We arrived and I punched in the code at the front door, where a much different reality exists beyond the threshold.  This is where I take a deep breath and swallow my trepidation for how the visit may unfold.

These days Little Red Riding Hood doesn’t recognize me. For the last two years she seemed to at least realize that I was someone she knew and someone who was nice to her.  Now it takes more effort to briefly catch her gaze once I track her down.  She’s usually rearranging silverware or dusting a table with a tissue.  Her head hangs low but she walks with surprising agility.

This time as we walked into her area of the facility, her roommate Amy (who scares me a little because she always looks angry even though I don’t think she is), was holding Mom’s arm and leading her toward me.  I just knew she was going to tell me that something was wrong.  (Mom has been irritating some of the other residents lately walking into their rooms and taking her shoes off to stand and gaze at them. I can understand their frustration  even if it isn’t that uncommon around there.)

Instead and to my surprise, after I said hi to Mom and tried to get her attention, Amy held Mom’s arm as if protecting her and told me that I must have the wrong mother.  That Mom couldn’t be my mother because she was actually her daughter.  She inquired about my last name as if to double check but then kept walking with Mom.

Christian, the sweet caregiver, told Mom’s roomate that I was indeed Mom’s daughter and wanted to visit.  She argued again, told me “Sorry, honey, you’ve got the wrong mother. It just can’t be.”  She explained that Mom was her daughter, and that she had not been herself this week, and therefore she needed to be taken care of.  And it was her job to do it.

I looked to Christian and nodded with a smile to let him know it was okay.  I softly touched Amy on the shoulder and thanked her for being so sweet and caring.  Her wide, smoky blue eyes met with mine  and her facial expression lightened, as if she suddenly realized I wasn’t going to take Mom away from her.

After chatting with Christian about how Mom was doing, checking her room and leaving her favorite Russell Stover’s Assorted Creams on her little bedside table, it was time to say goodbye.candy

I caught up with them again and Amy was still holding Mom’s arm lovingly as they strolled around the facility.  I stopped them to give Mom the longest and most loving embrace possible and I told her that I loved her.  I almost, for a second, felt the old her hugging me back.  Or maybe I was trying to wish it to happen.

I leaned down to capture her attention and tell her again how much I loved her.  I got a brief smile but she kept on walking.

Amy looked at me and smiled like she felt badly for me, and told me not to worry, that Mom “just hadn’t been herself lately.”

As we left, I smiled and was grateful that someone new was also watching out for my Little Red Riding Hood.

A Different Kind of Moving Day

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Moving Day in 1991: MacGyver and I were just married and Connecticut-bound. That little truck was full of hand-me-down furniture from our parents. We just needed streamers and cans tied to the back of our little caravan to make the picture complete.

So many “moving days” flash through my mind like a slideshow in an old Kodak carousel.

Up to this point, moving days that I recall have been full of happy memories.

My nervous anticipation as I unpacked my little red car to move into my first college dorm room.  And the bittersweet excitement I felt when MacGyver and I left my hometown in our little Budget rent-a-truck as newlyweds to drive 1500 miles away and start our life together.

My overflowing sense of pride as we moved into the first little house we purchased years later, and the unbound  joy we felt as we brought our babies home from the hospital and moved them into their newly decorated little rooms.

I can also envision moving my kids to their own college dorm rooms in the not-so-distant future, as hard as that is to believe.  Just imagining  how bittersweet that will feel puts a lump in my throat.

So many moving days filled warm, bittersweet feelings.

Then there’s tomorrow. A move-in day I hadn’t really ever imagined, mostly out of denial. The day I move my Mom into a nursing home.

A wonderful, safe and perfect place for her.  But a nursing home no less.

She doesn’t recognize me much any more and her head has started to hang lower as if  her little neck muscles are starting to give up, so I don’t think she will be sad about the move.  Correction: I pray that she will not be sad, or give me that far-away, but at the same time, not-so-far-away look in her deep, beautiful, soulful brown eyes.

Our roles have now reversed.  And as such, I have written her name in Sharpie on the labels of all of her clothes and towels as I have packed them for her moving day. As if I’m getting ready to take her to camp tomorrow.

It’s all very surreal in so many ways, as the snow spins in the wind outside my window this first day of May.

A new and different kind of ‘moving day’ indeed.

Goldilocks mission for Little Red Riding Hood successful thus far: The dreaded nursing home decision.

little redI haven’t written any posts for more than a week. I’ve been a bit numb from the drain of the last weeks with Mom, or Little Red Riding Hood, as I like to call her on my blog. And I know you readers enjoy my more light-hearted posts. So I’ve been torn about writing about Little Red Riding Hood for the last month or so. But it’s part of my Life on Wry, so I’m sharing a post I wrote today for my other blog, Laughing at Alzheimer’s (because laughing doesn’t’ make my mascara run).  So here we go.

Nursing Home selected. Check. (I’m tired … are you?)

The much anticipated intervention meeting with my Stepdad was successful. Don’t get me wrong, it wasn’t easy convincing a man that it’s best for his wife of 30-plus years to be in a nursing home because of the level of care she needs. But the hospice folks helped me get through this difficult conversation. It had to happen. I was losing too much sleep worried about them both.

We ended the meeting with him open to the idea and to hearing about my top choices after researching and touring area nursing homes that were a potential fit.

The next day when I came to help with Mom, I again explained to my Stepdad that I wasn’t trying to be pushy, but that I felt – for various reasons that I explained and probably over-explained – that it was the right thing to do for both of their safety and well being, as hard as it was to formulate those words.  He knew I didn’t take this lightly and that I had been researching options for when the next shoe might drop (after our infection in December sent Mom into a tailspin of decline). He knew my heart was in the right place.

In true Goldilocks style, I have been researching and touring various nursing homes of various sizes with differing amenities and programs. Small, medium, big homes, ones with lots of programming and little programming, ones close to my house and close to my parents’ house, in the lower, medium and higher price ranges.

I participated in these tours almost robotically, as if for a work project for which I was designing a features and benefits grid in order to write a brochure about their differences. I only cried on the way home from the tours a couple of times. It was a completely surreal experience. I wanted to have my sister with me, but it wasn’t an option. She’s been gone for 13 years. This was a solo mission. And she was with me in spirit, I really think she was.

After I went through all of my notes and all of the brochures with my Stepdad he agreed. He said it sounded like I had a favorite and he liked my rationale. I gulped and told him how much pressure that was to be the one to pick and he calmed my nerves and reminded me how much effort I had put forth. Was he really on board? He would go see it with me later in the week (last week) and bring his checkbook for a deposit if it felt right.

Was I hearing him right? Was he really on board? Don’t get me wrong, this took much time and many “come to Jesus” conversations, as I like to call them, over the last couple of years, and more angst than I can even explain. But he knew I seemed more serious this last few months since Mom’s decline. And he knew, in his heart, it was time. But was I actually hearing him agree with me on this subject for which I dreaded the very thought of? Indeed.

I explained to him how one of the nursing homes just felt right to me and I could picture Mom there. How natural it even felt with the Executive Director who gave me the tour. She reminded me of someone dear from my hometown. So many things made it seem like the right place. I drove away dabbing tears and pulling myself together, knowing that it was the place my Mom should be.

I took my Stepdad a couple days later. It was clear to me that he had taken some time to think about this whole issue, and felt even more resolve that the stimulation and care she could receive was what would be best at this point in her decline. I was still in shock that this was really happening and that I had steered our ship to this point.

Tomorrow the ‘assessment team’ from the nursing home will assess her at my parents’ house. To determine her needs, and that the facility is a good fit. Now that we’ve come this far, I only hope it will all go smoothly. I know it’s going to be a rough ride, but surely it can’t be more rough than the last couple of years, right? I’m probably wrong about that aspect, but I still know in my heart it’s what is best.

I’ve already picked out a comforter and curtains for her little room. They have flowers and the colors of pink roses in them like she likes, or liked anyway. And I have a list ready of what all that I will furnish her room with, from photos and knick knacks to her wall calendar and hand lotion. My stomach is wrought with unease, and I wake each morning consumed with guilt and wishing my sister were here to tell me I’m doing the right thing.

We’ll see what tomorrow holds. I’m going to think positively. Besides, that’s what I tell everyone else to do all of the time.

But being a grown-up really does suck sometimes. And it makes me tired.

Wish me luck.

Crossing lines.

colorfulcoloradoHer eyes watch me blankly as I turn each page and she nods her head occasionally as I narrate  — like she somehow knows that nodding is the expected response.  But the faraway look in her eyes tells me she doesn’t know what I’m narrating for her or who I am.

Little Red Riding Hood was the queen of scrapbook and photo album organization, and for that I am truly grateful.  I enjoy finding new photos that I’ve never seen with her on my weekly Wednesday visits at her house.  Her walking has become unsteady, so Wednesdays I now go to her. She watches curiously as I snap a photo or two with my phone.

I continue to try to spark something in her eyes with old photos like I was able to it seems like just months ago. But Alzheimer’s has now almost completely robbed us of those rare moments of connection, stealing so much more these last few months.

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Many of the photos and mementos we go through page by page bring back such a rush of memories and I would love to talk to her about those moments and scenes from our lives.  Or to my sister. There are so many photos of the three of us.

It’s these moments when I can feel my heart getting squeezed by something deep within me and wrapped in blanket of bittersweet loss.  That’s when I realize I’m holding my breath and that I need to put the albums away until next time.

I remind myself to breathe as I place the albums back on the dusty shelf and shake off the sad like my dog shakes the water off  her back after a bath.

This old photo of my grandparents brought a smile to my face as I remembered taking this same shot of my boys as we crossed the state line on the day we moved to Colorado when my boys were so young just nine short years ago.   I never knew this grandfather but my youngest son carries his name — both of them in the right of these pictures. Who knows, maybe my Mom, little Miss Historian, took the picture of my grandparents.

Life is one transition after another in so many ways.  Some big, some small, some full of joy and some full of sadness, and many a little of both.  The challenge is knowing how to embrace each transition and carry through what we learn to the next one. And to do it with grace.

Facial Fuzz Friday

See page for author [Public domain], via Wikimedia Commons

See page for author [Public domain], via Wikimedia Commons

My friend who I have known since grade school called me in horror yesterday, laughing and shrieking at the same time as I picked up the phone.

She had just been to her regular aesthetician for a quick eye brow shaping when the woman explained to her that it was time for a chin wax.  She was horrified.

After our call, I opened the community paper to a lengthy article by a regular humor columnist about midlife facial hair and her disastrous experiences with facial microplaning after her daughter told her that her face was furry like their puppy.

And then there’s Little Red Riding Hood’s  “fu manchu”  beard, as  I call it.  Mom’s Alzheimer’s is in full-on fast forward motion (so much so that it’s been hard for me to even think about writing about it lately) and I can hardly bear the frightened look she gives me when I come at her with the scissors to trim her little grouping of silver chin hair.  She would be mortified if she realized, but I’m not sure terrified is much better at this point.  Trust me, I question this judgement call for reasons I’ll explain later.

At my request, MacGyver installed a lovely 5000- power lighted magnification (I’m exaggerating a bit) cosmetic mirror in my bathroom.  And I’m telling you, if I catch my reflection too early in the morning at that strength, I’m convinced Sasquatch is in my bathroom.  I’m tempted to rip that puppy back off the wall, but it might hurt MacGyver’s feelings.

This midlife physical change thing baffles me.  And to be coincidentally timed right as we lose our near vision … so that we can’t even notice our facial fuzz and fur?  Now that’s just cruel.

I’ll add this post to my vanity diaries. I know I’m lucky to even have hair and to be alive to notice.

But I’m even luckier to have close friends who have sworn to me in blood that if I end up not realizing that I have fu manchu facial hair at some point one day, they will chase me down with tweezers in hand, no matter what.

Twilight zone turned school zone.

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As I say often, “You learn something new everyday…” (And as many who know me hear me say even more often, “Every day’s a damn school day.”)

I now better understand the impact that certain infections can have on the elderly and on those with dementia.  They can actually cause delirium.

And I now know that 30% to 40% of elderly patients with serious infection don’t exhibit the usual signs of fever due the inability of the immune system to mount a response to infection due to the effects of aging (or in Little Red Riding Hood’s case – Alzheimer’s).  (I felt like Velma in a Scooby Doo mystery trying to figure out what was causing her further and furious decline.)  If you already have Alzheimer’s, infections can put you into a mental tailspin.  This was our week.

Fortunately, after copious amounts of heavy duty antibiotics and eye rolling, Mom was actually able to come back home this afternoon.  She smiled at me more today and said many more words to me today than she has in the last few weeks.  I even got some bona-fide Mom to daughter smiles which tickled me with delight.

We still will assess where we are with her doctor, but it appears that we have bought a little time for her, avoided the cuckoo’s nest/twilight zone for a bit longer and become better educated in the process.

I also had the privilege of doing a Yoga class today (hallelujah) geared toward technique and theory, which was fabulous.  I also got to wear my awesome new yoga pants. And I got to take a lot of deep breaths, which were welcomed.yoga pants

Oh, and MacGyver discovered a new Chardonnay for me named Irony which seems quite fitting. And it is quite good.  MacGyver makes a damn fine Sommelier.  Which makes me a damn lucky sidekick.

Overall it was a day of education and progress which is ALWAYS a good thing.

Thanks so much for your support on this journey!

What’s the most ironic wine you’ve ever enjoyed?

Flying over the nest.

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“I mean—hell, I been surprised how sane you guys all are. As near as I can tell you’re not any crazier than the average asshole on the street…”  

(from Nicholson’s character in One Flew Over the Cuckoo’s Nest)

I think the universe intended for me to go to that intense yoga class that resulted in a huge release early in the week to prepare me for what was coming.  I honestly do.

Little Red Riding Hood (my Mom with Alzheimer’s) had to go to the hospital yesterday via ambulance because we couldn’t get her to walk or get up and because she doesn’t really communicate, we couldn’t figure out what was wrong.

She is still in the hospital and depending on how she recovers (apparently certain infections can make dementia worse.  Who knew?), she may or may not be able to go home since she seems to have advanced to the next stage.  Either way, the next shoe is starting to drop and I have been in full gear researching facilities and options. (These are times when I miss my sister the most.)

Hospital visits were beyond bizarre for various reasons, but mainly because 1) hospitals in Denver were full due to the flu and we were diverted to a less full hospital which was still quite full and 2) she is in a room where they put 4 people who need 24/7 “sitters” (for people who don’t understand what is going on and might try to get up and then fall).

It was like I was in a strange movie that was so awful it was almost funny.  I kept waiting to hear Jack Nicholson’s voice.

Here are some highlights:

-One of Mom’s roommates had his own sitter right by his bed at all times which made me uneasy.  He was listening to Jimmy Hendrix music and blurting out aggressive sounding phrases.  I swear to you I thought he was going to pull out a shank from under his mattress.   And he sort of had the Jack Nicholson look going on.

-Another roommate kept asking for a beer and pointing to what he thought was a beer Stein hanging up on the wall (it was actually a piece of medical equipment that did look like a Stein) and wanted us all to see it. He was the cutest and sweetest little man I’ve ever seen.  I wanted to go buy him a six pack and make his day.

-Two of the Certified Nurse Assistants (the sitters) were absolutely darling.  They have hearts of gold and I wanted to adopt them. One named Flora from the Philippines told me all about her family’s plantation in the Philippines where they grow rice.  She said if someone made $750 a month in the Philippines they would be so rich they could have five maids.

-Another of the sitters I’m guessing was from South America and was determined to find something that my Mother would eat.  We finally landed on chocolate cake and Pepsi once I got there today and shared my mother’s strange eating preferences. Worked like a charm.  Some things are never forgotten.  She also told me I have my mother’s nose and she bet my Mom was quite pretty when she was younger.  She was right.  I told her she was a beauty queen in high school.

-The unfriendly nurse (who was clearly put-out with any question I asked) was seriously channeling Nurse Ratched.

-Another one of Little Red Riding Hood’s roommates kept asking for cottage cheese over and over and seemed sad. He had a huge scar across his head.  I wanted to give him a hug but he was on the side of the room by the guy I was worried had a shank under the mattress.  This roommate’s mother came and visited him and my heart ached for her.

-There were four TVs going at the same time, plus the Jimmy Hendrix music, plus the beer and cottage cheese requests and medical chatter.  Enough uncoordinated noise to make an undiagnosed ADD person with sensitive hearing lose it. but I didn’t.

-Little Red Riding Hood has not lost her ability to sarcastically roll her eyes and did so every time a room mate blurted something out. This cracked me up.  Apparently she thought the rest of the group was crazy, not her.  Again, some things never change.

-She petted and squeezed the cute little beanie baby dog nonstop from the second I brought it in from the gift shop.  This made me happy because it made her happy.dog

-I’m damn sure figuring out a way to go to yoga tomorrow.

Thanks as always for reading…  Hug or call whatever family you have this weekend and tell them you love or appreciate them — even if they drive  you nuts.

The Good News. The Bad News. And the Reality Check that’s Needed.

Below is a post that I have re-posted from my new Alzheimer’s blog from yesterday: http://www.laughingatalzheimers.com.

You’ll see some of my past posts from Life On Wry that are related to my Mom and our journey with Alzheimer’s there for a bit as I get this new blog up to speed.  But don’t worry, LifeOnWry isn’t going anywhere!  As always, thanks for being on this journey called life with me!

alzheimer's statistic

Good News.

On several news stations yesterday I heard about the latest government report revealing that cancer death incidents have fallen in the United States by an average of 1.8 percent in men and 1.4 percent in women.  These percentages don’t sound dramatic, until you consider that the numbers didn’t start even falling until after the early 1990s.

Further, scientists report that the incidence of cancer and subsequent deaths could be further reduced if all those with New Year’s resolutions to lose weight, eat healthier, exercise and quit smoking would stick to their plans.

There is still much to be done to research, prevent and combat Cancer, the second most common cause of death in the US, but the fact that these numbers are decreasing – rather than increasing – is good news.

Added to that is the fact that the 5-year relative survival rate for all cancers diagnosed between 2001 and 2007 is 67%, up from 49% in 1975-1977. The improvement in survival reflects both progress in diagnosing certain cancers at an earlier stage and improvements in treatment, according to a 2012 Cancer Facts & Figures report.  In other words, research.

Bad News.

Now for the bad news. Alzheimer’s disease (AD) is on the rise throughout the world.  And there is still no known cure or way to prevent it, no remissions.  In fact, it is always fatal, causing brain changes that eventually impair an individual’s ability to carry out such basic bodily functions as walking and eventually swallowing.

According to a 2012 Alzheimer’s disease Facts & Figures report, about 5.4 million Americans now have AD. By 2050, more than 15 million Americans could be living with the disease, unless scientists develop new approaches to prevent or cure it.

In fact, every 68 seconds, someone in America develops Alzheimer’s. By mid-century, someone in America will develop the disease every 33 seconds. It is estimated that nearly 500,000 new cases of AD will be diagnosed this year alone.

According to the Alzheimer’s Association, AD is the sixth leading cause of death in the U.S. and the fifth leading cause of death in Americans over age 65 years. And although the proportions of deaths due to other major causes of death have decreased in the last several years, the proportion due to AD has risen significantly.

Researchers have long noted that funding for Alzheimer’s research lags significantly compared to funding for other major ailments. According to University of Mississippi Medical Center, the $450 million allocated by the National Institutes of Health (NIH) for Alzheimer’s is equivalent to less than 15% of the research funding for HIV/AIDS, less than 11% of funding for cardiovascular disease research, and less than 8% of funding for cancer research.

And for every $28,000 spent on Alzheimer’s patient care, only $100 is spent on research.  In fact, the government funds more nutrition research than it does Alzheimer’s research.

Reality Check Needed.

Through exciting research initiatives, scientists continue to make headway in understanding this devastating disease. They believe we are getting close and even at a tipping point.  We just need a commitment from the federal government to fund the level of research necessary to tip the scales on a disease with these startling numbers staring us in the face.

And we’re getting there. In January of 2011, the National Alzheimer’s Project Act (NAPA) was signed into law by President Obama. According to the Alzheimer’s Association, The National Alzheimer’s Project Act (NAPA) will create a coordinated national plan to overcome the Alzheimer’s crisis and will ensure the coordination and evaluation of all national efforts in Alzheimer’s research, clinical care, institutional, and home- and community-based programs and their outcomes.

But that’s just the beginning. Because there are no survivors of this disease, and those affected directly are largely unable to advocate for themselves and for the need for more research (like many AIDS and Cancer survivors are able to do), we must speak out about the need to federally prioritize the impending Alzheimer’s epidemic.

Members of the public — not just medical and association professionals — need to speak up and take action, to contact their representatives in Congress and become advocates through the Alzheimer’s Association.  To defend helpless Alzheimer’s victims, much like we defend the voiceless for other causes in our society.

The time is now to take action.

Visit the Alzheimer’s Association’s  advocacy pages for a simple way speak up for those affected: http://www.kintera.org/siteapps/advocacy/ActionItem.aspx?c=mmKXLbP8E&b=7516993&auid=8520366

The Alzheimer’s Association — and for Coloradans – it’s the Alzheimer’s Association of Colorado — is the best place for families to go to learn about programs and services available to those on the Alzheimer’s journey, as well as about opportunities to participate in local research through TrialMatch.

Believe me, you have no idea how awesome this organization is until you’re faced with this disease and they help you breathe easier.

alz.org/co | 800 272 3900 helpline 24/7

Little Red Riding Hood and the Monkey Palooza

sock monk

Little Red Riding Hood keeps me guessing on her visits. If I turn around for more than a minute, she will nicely rearrange things for me.  Almost always after she leaves on her Wednesday visits, I either find that something is missing or that she has moved something to a strange place.  Almost like my Mom is messing with me, but she has no idea given her Alzheimer’s.  And I have to smile sometimes.

Since we are a dog lover family, we have a basket of dog toys in the living room for our spoiled dogs to access at their leisure. As you can imagine, there is always a dog toy,  or two, or three, strewn across the living room or kitchen floor.  They know who’s in charge here.  They are.

But things on the floor seem to bother my mother, who kept our house the cleanest and most orderly on the block. So she spends a lot of her time here picking up dog toys, leaves and such.  (Less vacuuming for me.)

Our mini Golden Doodle is nicknamed “Monkey Dog” in our house because we’re sure she has opposable thumbs which she uses like a little monkey to scavenge for food and trouble at all times.  So ‘monkey dog toys’ for our Monkey Dog are quite fitting, and thus aplenty in our house.

Last week after my Mom left, I found the sock monkey dog toy in my spoon rest by the stove. Once I figured out that she must have done it, I got such a kick out of it that I left it there for a few days despite how germy it probably was. (I have germaphobe issues.)

Then yesterday after she left, I found another monkey dog toy perfectly positioned in our home computer chair, as if ready to type.  This too cracked me up. I left him there until the kids later moved him.monkeychair

Today I am grateful for our monkey palooza and the smiles that Little Red Riding Hood gives us.

What are you grateful for today?

White Christmas Dreams and Santa’s list. Damn that Christmas music. (Grasping for Gratitude)

Christmas tree

I know better.  I really do.  What kind of holiday high was I on to think that turning on old holiday music while I decorated my tree during a Little Red Riding hood visit was a good idea?

Being a bit of a sentimental sap already (especially with old tunes), holiday music has a way of making me miss ‘what was’ more than any other kind of music.  Thoughts of my Mom and sister and I decorating the tree while the Christmas music blared into our fancy room with green carpet and yellow velvet love seats, and all of my Mom’s plants all around the room.

I would get so upset if they started to hang one single ornament or place one strand of silver icicle tinsel garland before I was there with them.  They knew what a younger kid complex I had, so they were very patient with me.  We would get the tree decorated perfectly, just in time for our cat Rascal to knock the whole thing over during the night.

So while my Mom (Little Red Riding Hood) was here today for her Wednesday visit, I thought some holiday music might put a little sparkle back in her eyes while I worked on my Christmas tree so the boys could decorate it later.  Sometimes little things like this can bring her back for a moment. But sometimes reaching for those random lucid moments can be downright exhausting.

I’m really not sure if she even  knew who I was today.  She barely spoke a word and her Alzheimer’s seems to have progressed to a new level. She can’t really dress herself and she seems to have little energy.  I can’t really be sure if she still thinks I even look familiar.  She hasn’t known our names for about two years now.

I kept asking her if the new garland looked okay on the tree and if she liked it.  Not even a smile — which is usually the saving grace of these encounters.  She just looked at me like a was a complete stranger yammering at her and she continued to pick up tree needles from my floor.

As I adjusted my tree ribbon and listened to Bing Crosby drone on about his White Christmas dreams and someone sing about Santa coming to town and checking that list twice, a few tears streamed down my face in slow motion.This isn’t going to get any better and I just hope it doesn’t drag out forever, for everyone’s sake.  And I feel guilty for thinking that.  Nobody gets better with this disease.  They just run out of life.

I tried not to let her see my tears, even though I really don’t think she could notice.   I wished I could have called my sister to complain, whine or speculate about what’s next on this dim horizon.  But I haven’t been able to do that for 13 years. She left me here to figure all this out, even though I know she didn’t mean to.

I know in my heart I have so much to be grateful for.  My health, my family, a roof over my head, my friends…..  But this morning just sucked.

So after a few songs, a few more tears, and a few more blank looks from my Mom who was still collecting dust bunnies and needles from my floor, I grabbed the remote from the table, clicked off that damn music and walked away from the tree.  My throat was tight from my pent up tears and I took a deep breath.

I noticed Mom had something in her hand.  It was a grocery list that my stepdad had written and probably thrown away. She must have had it in her pocket. It was in three pieces and she kept looking at the pieces and refolding them. She’s been a list-maker since I can remember. I grinned because some old habits really do die hard.

Who knew what was going through her head while that music played and I decorated a tall outdoor tree in the center of my living room?  Maybe running her fingers over the little pieces of that list in her hand brought her some kind of comfort that she needed.  If that’s the case, I’m certainly grateful.

Am I still a creep for laughing if I’d be crying otherwise? Grasping for Gratitude.

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My Mom has always loved the holidays.  And she took great pride in her present wrapping.  She would mail everything to us two months before Christmas because she was that prepared. (She was an uber organized, list making, cleaning machine to be reckoned with.) But now that her Alzheimer’s has progressed to the point that she has no idea what Christmas is, it’s hard to figure out what to get her that she would enjoy opening.  I know how much she has always enjoyed wrapping and unwrapping and I can still see a sparkle of  recognition in her eyes when she unwraps a present.  But the options are slim these days.

While I was on my mad Amazon present shopping spree to get everything ordered and on its way (Amazon is the BOMB and where I buy almost everything with my Prime free shipping account), I struggled to figure out what to get her. I found some great puzzles for people with Alzheimer’s – easier than the ones I’ve gotten her before which are now too hard for her. And I ordered her favorite Russell Stover’s cream chocolates which I have bought for her every Christmas for the last 25 years (she has NOT forgotten that she is a chocoholic).

Most other things that I would have gotten her in the past would not be of  need, use or value to her now.  So I had a brainstorm – since my stepdad is having trouble getting her dressed and undressed each day (sorry I know this is depressing but it is what it is), what if I could find clothes that would help make it easier? There had to be something out there like robes and nightgowns with velcro fasteners, that kind of thing.

So during my search I came across some items in this general category that made me laugh outloud and then stop myself.  Because I felt like a creep for laughing. But I figure at this point most of the time when I’m dealing with my Mom stuff, I’m laughing so that I won’t cry. And I’m telling myself that makes it less creepy.  Same as when I make Alzheimer’s jokes about my own memory and it freaks people out and they don’t know what to say. Anyway, just go with me on this.

So here we go, the first item of interest: the Anti-Strip Suit. 

Product Description: The Latest, Most Effective Anti-Strip Suit in an innovative fabric that resists tearing like never before. Sewn down collar, embroidery detail. Incredibly long zipper that extends to below the knee for easy assisted dressing. Dome closures at neck helps prevent disrobing. Elasticized waistband and roomy seat for an easy, comfortable fit. Strong polyester-cotton knit. Machine washable.

(Apparently this is so people won’t randomly strip – we’re not to that point yet.  But it gave me a hard-core chuckle. And what a great idea for a product.  I guess there is a whole industry of clothing like this that I had no idea about.  Pretty genius actually.  Do they sell these for teenagers?)

Next up: the Fancy Gold Lamé Adult Bib.

IMG_2661

Product Description:No danger of ruining your holiday or special event finery with this whisper light GOLD Lamé  adult bib. Measures 14.5″ long from bottom of neck, and 13.5″ wide. Velcro closure. MADE IN THE USA!! Fun and glamorous, perfect for home or restaurant. This bib is NOT intended for heavy duty use. CARE NOTE: Bibs may be laundered in cold water and hung dry, but do not attempt to spot clean: If rubbed, the gold will delaminate. Do NOT iron, fabric will melt.

(We are not to this point either but the gold lamé  part cracked me up.  They had others with leopard, bowties and  fake jewelry embroidered on them.  They just needed some with a bikini outline like on those corny T-shirts you see in catalogs where it looks like you are wearing a bikini.  But then you’d need the anti-strip suit for the rest of the table I guess.  Maybe that’s a bad idea.)

bikini

At any rate, I found a few items to order.  And I’m grateful that I got a chuckle out of some of these items, even though it still feels a little creepy to admit that.  But I’m sticking with my story that it’s better to laugh than to cry and that takes the creep factor down a notch.

I’m also grateful that I got quite a few holidayish things done today. I will breathe easier as I lay my head on the pillow tonight.  I’m also thankful for you, my readers.

What are you grateful for today?  (Even if you have to grasp for it.)