Category Archives: alzheimer’s

For real. Gratitude Experiment: Day 40

 

Whew. I am wiped.  What a weekend.  Wonderful time with my dad, stepmom and niece in town. One of the best weekends I can remember in a while.  I am so grateful that they all battled the craziness of the airports to come for the weekend.  Truly thankful.

But I do feel almost guilty for how heavy my last post was.  There’s that subconscious Catholic guilt again. But I just had to get all that out there, and it helped.  Thanks for muddling through all this self-discovery with me.  It’s way cheaper than therapy.  So I owe you.

September 22 is always a weird day, not only because my sister died on that day, but also because it is my Mother’s birthday.  For real. Yes, I know.  That is messed up with a capital M. In a big way.  Don’t even get me started on that.

At any rate, my out-of- town company family left this afternoon and then a few hours later, my mom and stepdad came for dinner to celebrate my mother’s birthday (a day late but trust me, she’s not counting — sorry that was awful).  I could tell she thought the whole cake and presents thing was fun, but she really had no clue why we were all singing to her. She was very puzzled (Alzheimer’s has a tendency to do that). And when it was time to leave, she went to the laundry room.  In total, she said about five or six words tonight. But she faked it pretty well.  Glad she can still pull it off.

For years, my sister and I always co-hosted dinner for my mom on her birthday.  We would flip a coin as to who would host and then sort of whine and complain all the while because it was always a little bit of an awkward night for reasons hard to explain.  But none of those nights hold a candle to the out of body experiences I have like tonight with my mom.  It’s like I’m watching a movie of someone else’s life in partially slow motion, and with German subtitles that I don’t understand.

But anyway, back to the gratitude which has really affected everything in my life, for real.  I am grateful for my family that visited and the wonderful time we had.  And that dinner with my mom went so well,  and that she seemed genuinely happy.  Thanks for reading.

 

I’m Seeing Purple. Gratitude Experiment: Day 32

I walked in the Walk to End Alzheimer’s this morning. What a terrific feeling of hope and camaraderie to walk away with. Last year the Denver walk broke its record with 8,000 walkers.  I guarantee you it was an even bigger crowd today.

I walked with a good friend who walked in memory of her mother who she lost to Alzheimer’s three years ago.  And I walked in memory of my Aunt, who we lost to Alzheimer’s a year ago this month and in honor of her sister, my Mom, who I’m losing to Alzheimer’s a little more each day.  I drew a picture of them on a huge sign they had for people to paint memories of their loved ones.

In a sea of purple, I saw photos on the back of so many walkers’ shirts. Photos of loved ones lost to this hateful disease. The thought that so many like me are fighting this fight is both comforting and terrifying.

This disease isn’t going away anytime soon, as the numbers continue to climb.  Yet it seems like the world is in denial about this disease and how very real it is.  Perhaps it doesn’t seem as real because you don’t visit anyone in the hospital when they have this disease?  And because you never hear anyone with it describing their suffering?  Because they can’t speak for themselves.

But it is very real.  And someone new is diagnosed every 68 seconds.  And by 2050 it will be someone new every 33 seconds.

Ironically, federal funding for Alzheimer’s research pales in comparison to that for other chronic diseases. According to University of Mississippi Medical Center, the $450 million allocated by the National Institutes of Health (NIH) 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.

I recently had the privilege of listening to a scientist discuss research initiatives and progress made. Scientists believe we are getting close and even at a tipping point.  We just need a commitment from the federal government to fund research.

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 it’s going to take much more. The public has to make it known what our federal priorities with regard to the impending Alzheimer’s epidemic should be, especially given shrinking budgets at every turn.  More people need to speak up and take action, contact their Congress representative or become advocates through the Alzheimer’s Association.  To put faces on the need. The website of the Alzheimer’s Association has advocacy pages dedicated to helping you do just that. http://www.kintera.org/siteapps/advocacy/ActionItem.aspx?c=mmKXLbP8E&b=7516993&auid=8520366  I know this is  a blatant plug for my cause, but I know with every molecule in my body that you DO NOT want to watch this happen to anyone you love.

If you’re still reading this and you’re not exhausted, I commend you.  And I appreciate you taking the time.  I’m truly grateful that you are reading this, that I went on that walk today, and that we can end this.  Let’s do it.

Why Alzheimer’s Is a Drag. Gratitude Experiment: Day 31

Even though it goes against the grain of my 100-day Gratitude Experiment, I feel the need today to write about why my Mom having Alzheimer’s is a drag.

I’m convinced that some gratitude will come to me by the time I finish writing this.  And I’m hoping these thoughts will help my readers cherish every moment they have with their loved ones.  And take nothing for granted.

My Mom having Alzheimer’s is a big fat drag because:

1. I wish I would have spent more quality time with her before she got sick.

2. I wish I had asked her if her favorite color was still yellow when she could still tell me.

3. I wish I would have paid better attention to the signs in the beginning.

4. I desperately wish for rare moments of clarity to happen when I am near.

5. I worry about her dignity.

6. Most healthcare workers have no clue how to treat a person with Alzheimer’s.  And it makes me want to help change happen.

7. She is afraid to take a bath.

8. I wish I could remember the name of that flowery lotion my grandmother used to give her every Christmas.  And I wish I had someone to ask that would know.

9. I worry about my Stepdad being sad and tired.

10. I worry about my Stepdad getting hurt and me not knowing.

11. I wonder how much of what I say she understands.

12. I wonder if I offend her by babying her.

13. I  wish I had taken better notes about my family history.

14. I wish I really knew when all this started – so hard to tell.

15. I worry about when the next shoe is going to drop.

16. I think about how she would not want to be this way.

17. I worry that she is frightened and she can’t express it.

18.  I’m scared to death it’s going to happen to me.

On the other hand, I am still able to be grateful because:  (whew, glad some gratitude came through)

1. I love it when I have what seems like a tiny a breakthrough with her.

2. I am happy when she smiles her old smile.

3.I love to be silly and make her laugh (when I use Three Stooges type humor it cracks her up).

4. I can tell she enjoys changing the bed sheets with me.  Especially if I’m silly while we’re doing it.

5. She’s still my Mom in there.

6.  I love that she said  really sweet things to me that day a year ago when I did her hair for her, when she was better able to comprehend and talk.

7. My stepdad is solid as a rock, and I love him for it.

8. I’m lucky that she lives close now so I don’t worry even more.

9. I can have these tiny moments of joy with her to always remember.

Thanks for reading.

Not forgotten. Gratitude Experiment: Day 16

I raced to get home after grocery shopping this morning to arrive before my step dad dropped off my Mom.   This is part of our routine.  He drops my mom off on the way to his weekly doctor appointment and I watch her for a while.   My mom has Alzheimer’s and is only 71.

Mentally, I have to gear up for visits with my mom, even though it has gotten easier since they’ve lived nearby for the last year and a half.   I used to be mentally drained for at least a day or so after every visit.  Sometimes it still really takes it out of me to see her this way while knowing that there is much worse to come.  But as I have worked through my grieving process for my old mom, I have learned to try to find a bit of  joy in our moments together as I search for her old self within her.  I like to think maybe my real mom is in there and it will just take me doing or saying just the right thing to get a piece of her back, even if just for a minute.

I looked out the door as she was getting out of the minivan. He usually lets her come up the sidewalk by herself .  Thank God she had her teeth in — my stomach sank at first when I couldn’t tell. Any casual observer would  think nothing of this.  Until she gets to my door.  She reaches for the door, then she stops and stares at me blankly.  Then today, in response to my hello, she said “hi” in her familiar mom tone.  (Hearing her old voice at the beginning of a conversation used to make me think maybe I just dreamed this whole thing.) At any rate, this was much better than her usual shoulder shrug.  I breathed a sigh of content.

As I walked her into the kitchen, the family history notebook she put together years ago was on the counter.  Secretly I was hoping she would recognize it. Maybe it could be the spark for today?  She spent a few years compiling it about 20 years ago and it is ever so thorough, with ancestry charts, old letters my grandfather sent home from WWII, newspaper articles, birth announcements and the like.

I point to it and explain to her that it’s the family history book that she put together years ago.  I told her how helpful it was for my youngest son’s school project last night.  She looked at me puzzled and said, “I did?”  I pointed out photos of her parents and her sister and she gave me a look that was both puzzled and blank at the same time. But I wasn’t giving up.

I motioned for her to sit down as I helped her understand the chair.  I let her thumb through some pages on her own. Maybe the pages would feel familiar?  I showed her the  photos of all of the houses her parents had lived in.  Photos have worked a little before. I narrated as I walked her though the book .  She was more intent than I have seen her in months.  I told her that I would be right back and I ran upstairs to answer a quick email for work.  I do this occasionally with ears perked in case she opens the front door in search of my step dad.  She is always looking for him when she is at my house, as though she thinks he’s in the house or just outside. She is much more at ease when he is at her side, which warms my heart like an old love story.

I started getting anxious and quickly jogged down the stairs, worried that I had taken too long.  To my surprise, I found her still sitting in same spot very intently thumbing through each page over and over and back and forth.  She looked content and engaged.

When my step dad arrived to pick her up she pointed at the picture of herself in a newspaper article when she was one of the beauty queens at her college.  She told him “That’s me” and smiled her cute little smile.

My heart sang.

On the second page of this 200 page family history notebook of my mother’s ancestry, it reads:

“I wish I had been more interested in what my parents told me about their families and early years.  I put this history together in the hopes that the knowledge and memories I have would not be forgotten.”

And for this I am grateful.

Never say never. Gratitude Experiment: Day 12

Sometimes it’s the people who you would never expect to surprise you that do just that.  I’m sure I used the word never more than a few times in high school, during my self-focused adolescent furies.  Mostly about my stepdad and how I thought we would never get along, much less like each other.

My stepdad entered my life in the early eighties. I was part of the package when he married my Mom – the youngest kid still at home, very bummed that big sis had moved on and left me there stranded. I think my stepdad and I both started counting down the days until my exit as soon as the vows were exchanged.

I wasn’t his biggest fan in those days and he certainly wasn’t mine (I shudder at the thought of what a jerk I probably was). For the most part, we managed to mutually exist in order to keep the peace for my Mom. I didn’t touch his stuff and he didn’t touch mine.  My mother had to pay the price if we did. And I’m still convinced that my cat’s disappearance wasn’t as random as it was said to be.  She had a way of throwing up on his bright white Buick Regal with a navy blue vinyl top at precisely the moment he finished waxing it and walked away.   I would have high-fived her little white paw if I could have.

Those were not fun days. And luckily I ended up with a boyfriend who was equally as thrilled about his new step parent situation as I was. It was a perfect match at the time and it got us both through high school relatively unscathed.

As the years went on and my mother faced her own struggles in the face of losing my sister, my stepdad was there for her like no other. I gained a whole new level of respect for this man and for the size of his heart as he stood beside her. Over the years we became part of team Mom, working together instead of against each other in support of my fragile and hard to understand mother.

Her Alzheimer’s diagnosis many years later launched our improved relationship into overdrive, forming a strategic alliance with the strength of a small army.  At my suggestion, we moved them closer to me so that I could help, and he has taken my lead on just about everything.  I try not to let that thought keep me up at night as I don’t feel grown up enough yet myself to have someone look to me for so many decisions.

I never understood what my mom saw in him back in the day, but now it’s quite clear. I witness it every time I help out with my Mom. Just Friday I noticed he had to remove all of the knobs from the stove.  He’s had to install all key locks on the doors.  And he’s had to get good at hiding things he doesn’t want to disappear (we’ve learned the hard way). He has adjusted to their new life without a complaint.

This man — who had most likely never cooked meals before, never cleaned a house, never handled organizing doctor and vet appointments, probably never dressed or bathed his own kids — now does all of these things for my mother.  I am in awe of his grace and strength.  We have a silent, understood mutual appreciation for each other.  We recognize each other’s capes and the irony of our new found closeness.

They say hard times can make people shine brighter than any star.   And for this I am grateful.

Coming Clean. Gratitude Experiment: Day 9.

Okay I have to come clean on something.  I’m starting to get a complex that every day I need to have something profound to write about on my blog.  However, I’m finding that it’s not always that easy.  And I have enough self imposed guilt trips that I am not going to feel guilty about this too.

So, some days I will just list a few things that I am grateful for while ideas for more profound posts percolate in my head (I promise some good ones are forming up there).

– I am grateful today that my family is safe and healthy – I have heard lots of stories this week in our community of those not as fortunate and they are in my thoughts.

-Also thankful that I have a career that is flexible with nice clients (although I really need to quit procrastinating on my work projects – this blog is way too good of a procrastination tool.)

-And grateful for my dear husband, who puts up with all my bad habits and neuroses, making him  the most patient and kind human being on the planet.  For real.

***Can you think of one or two things that you are grateful for right now?  Think about writing just one to three things down each night before you go to sleep on a notepad you keep under your bed.  Nothing fancy required.  Keep a pen by your clock to remind you.

Studies show that those who practice daily gratitude feel better about their lives overall, are more optimistic about the future, and report fewer health problems. Studies have also shown that those using daily gratitude  get more sleep.  With less time spent awake before falling asleep, they end up feeling more refreshed in the morning — and who couldn’t use that?  Other studies show that gratitude can even have a protective effect against heart attacks.

And… it’s cheaper than therapy by a long shot.  Try it tonight. You will thank me later, I promise.