Holidays

     I didn't decorate Peggy's room this year for Halloween.  Ghosts, skeletons, witches and candy (that she can't even eat) just aren't fun anymore when you've been staring death in the face for the last three or four years. Please don't be offended as I say that like it's no big deal, making a joke or a mockery of the situation.  My honesty is ripe with trying to understand how to navigate my world with Peggy still in it.   I'm with her as every holiday, anniversary, world event, reunion, birthday and Halloween comes and goes. I've learned that these events don't have the same meaning they used to.  Why?  Because they all mark the passage of time.  Time doesn't exist here as we used to know it.  Time surrounds us now with a celestial, infinite wisdom that has moved beyond the present. When I really hug her time will stop, close in on us, and all the years, all the holidays, all the love becomes one beautiful moment.

Pictures of Puppies

Millie and Peggy

She's a Terrier, of some sort....

This Alzheimer's Blog sucks!  I'm tired of posting pictures and stories about death and dying.  So, I got a puppy. Take that Alzheimer's!  Meet Millie, another captain crusader against your depressing, sad and overwhelming stupid disease.  #dogtherapy

Our happy place
www.wyldersholisticpetcenter.com

Hilarity for Charity Video we helped make!

My Dad's last lesson

My Dad's star

My Dad taught me to drive, golf and fold towels properly (he was an Air Force man.) Great life lessons too, like how to work hard, how to enjoy life, and one last and very surprising thing, he taught me something about death and dying.  I thought that's what Peggy was doing.  My Mom's brain has slowly been dying over the past 13 years, so I have had lots of time, too much time to think, sympathize, empathize, and even pontificate every angle and emotion about dying. I am waiting sadly, hopefully and patiently for it.  Every time I see her, I think it's near, sometimes so near that I'm afraid to leave her, but I've been thinking that for well over 5 years now.

My Dad had cancer the last few years of his life, but he was very matter of the fact about it.  He got a kidney out, had his weekly chemo, a little radiation and generally just did what the doctors told him and lived with it.  He still went out to dinner and happy hour with his buddies and walked his dogs.  I'd call him and he'd never, ever complain, maybe that he was just a little more tired than usual.  So when he had a seizure and asked me to come down to Florida I went, immediately.  Having been so close to death with my Mom for so long, I was not prepared at all for what might suddenly happen to my Dad.

His cancer had metastasized to his brain, and all his treatments were going to be stopped.  There was talk of rehab and getting him back on his feet.  My brothers flew down, we installed handrails and I met with his doctors.  He never talked about dying, he didn't want to.  He didn't even tell us what or where, if anything should happen to him.  I felt like I was the only one that knew the inevitable was around the corner, and that corner was coming up fast.  I knew the signs, I knew the feeling, I just knew it.

So, I got on  3 planes in the middle of the night to get myself back down to Florida. When I walked in his room his breathing was heavy, loud and coming through the grit of his teeth.  It wasn't difficult for him to breathe air it just had the sound of endurance running out. The groan of a weight lifter pushing through that last set. I dropped my bag and kissed him. I told him that it's okay, that I love him, that he is loved, by me, by so many and that he's an awesome guy.  I was here to hold his hand, like how he held mine when I was little and how he was one of the very first hands I ever held. I thanked him for that too.  His breathing began to quiet.  The sound of intention, concentration, determination all the stuff that has made up my Dad's life quieted down to a slow, relaxed sort of dream, and I laid down near him on the tiny love seat with my shoes still on, next to my suitcase.  I drifted in and out of sleep to the softening sound of his breath and the quiet golf game on tv until I woke to a missing sound.  The sound of his breath and his life that had let go. My Dad died within two hours after I got there.  I got to hold his hand, it was okay, it was kinda beautiful.  It was peaceful, it was logical, it wasn't like my Mom.

So when I came home, and walked in my Mom's room I knew what to expect, and it wasn't death.

telling Peggy about Dad dying

I knew what to expect, and it wasn't death

Visiting Peggy, celebrating another birthday.

Oliver Sacks and Me

"You can't see me, but I know you can feel me, because I'm right here."

Oliver Sacks blew open my mind.  He taught me that people don't see the world the same way I do. They don't taste things the same way, they don't feel things the same way, or even remember things the same way.  He showed me people navigate life in all kinds of unique ways.  Why were his scientific, non-fiction books so enthralling?  It's because his stories were honest reflections and observations about people.  He didn't refer to people as mental or retarded or diseased. We're all just people.  Our brains have different ways of seeing and being in the world. These individual stories gave me a better understanding of the human existence.  Through his observations and stories he excited, fascinated and encouraged me to explore my own vision of reality through my art, feelings and relationships.

What I didn't know when I first read his book The Man Who Mistook His Wife for a Hat two decades ago is that his words would give me the patience and empathy I would need today, as my Mother continues to delve into the depths of Alzheimer's Disease.   My reality become skewed as the natural  time line from daughter to mother and grandmother began to wobble  The tables turned and I had to care for my Mom as she went backwards mentally and began seeing the world through a completely different lens and time zone than me.  It has been an arduous road fought hard with love, but sometimes despair in the lack of understanding.  Over the past 12 years I have gone back to Oliver Sacks' words for comfort, insight and strength.  He knew disease didn't define the person and that understanding was as important as a cure.  Although this quote is not his, he experienced the value of its insight and believed it was important to share, just like the stories he shared about the people he studied.

The animating theme of Sacks’s work is the importance of individuality in medicine. He quoted Sir William Osler with approval – “Ask not what disease the person has, but rather what person the disease has” – and wrote in Awakenings: “There is nothing alive which is not individual: our health is ours; our diseases are ours; our reactions are ours – no less than our minds or our faces.”

Oliver Sacks Obituary

Release Her

Peggy Lu, Peggy, Lois & the Universe

Our final journey

Lois and Peggy

I actually got very scared the other day, and felt like I couldn't possibly do this anymore.  That Peggy was so close to death, and frightened that I had a bit of a panic attack.  I am used to the way she looks, and breathes with her mouth wide open, and struggles to swallow, the way she shouts out, the crippledness of her body. I am even getting used to how she can't see anymore, her beautiful blue eyes wandering around in darkness, like her mind.  I panicked because I didn't want this to be normal anymore because I am also used to hugging her, caring for her and loving her.  If Peggy was my beloved pet, as she is my beloved Mom I would take her to the vet immediately and gracefully help her go.  I would hold her hand, kiss her, make sure she knew she was loved.  But, instead I have to leave the room, leave her, and say goodbye, only to come back another day and wish the same damn thing. Why is there no way for me to do that for her?   I've helped her every step of the way, and I want to be with her until the end, for the final stage of this horrible disease, death.

It's hard to do this alone, and I have since gathered my strength by phoning a few friends and letting my guard down.  My very best friend, my husband went with me the next morning with pink roses and held my hand and hers.  Today is a new day, and we will just keep walking and continue our journey until we reach the end, whenever that may be.

What's left.

I'm kinda beyond describing in words what's been happening these past few months.  I don't have anything inspirational or hopeful to say, it's just what it is.  I usually can't communicate with Peggy and now I don't even know if she can see.  Hospice has been involved for a few months now, they check in on her once a week and with me about once a month.  I've met with a social worker and a spiritual advisor who are nice to talk to in her room, so it's not just me holding her hand and looking at my phone.  It's grim, it's grueling and I also feel that everyone has a cross to bear in this life, and this is ours.  So I stopped sharing so much, I don't want to ruin anyone's day, or look for sympathy.  Honestly, I want it to end.

Usually (hopefully) Peggy is sleeping, except for just after lunch or dinner when we need to keep her upright and awake for a little bit so she doesn't choke on her food.  This day, she was especially communicative.  I filmed this a few weeks ago, and have been going back and forth about posting it.  I'm not trying to gain sympathy or accolades for being a good daughter.  Many people say that to me, and I appreciate it and it makes me feel good, but please, this video is not about me.  This video is about not knowing what to do during the (never) ending stages of ALZ.  Again, by posting our story I hope and believe that the cry for help will be heard louder so that more funding, research and eventually a cure will happen. But also, to gain insight into ALL stages of the disease, and really talk about caring, as well as curing people with Alzheimer's.

This is an insane in the membrain movie and I have trepidations about posting it.  It's not fun to watch, and you don't have to watch it, but I'll tell you it's got quite a bit of mystery, love, emotion, shock, fear, and utter madness in it.  It's nearing the end (maybe) of our journey on this road called Alzheimer's and I had to document it, because I want to remember what it's been like, just the two of us in that room together.  Looking at us from the outside in, and after watching it, I realized just what kind of movie this is, it's a buddy movie.

David, Paul and Lois

My brothers came in to see us. When all three of us walked in her room, somehow she knew it, or we knew it and that was enough to make us believe that she did.  Her three kids, telling her we loved her and are there for her, just like she was for us put a smile on all our faces.  Our kind and caring Mom that made us the parents we are today.  She'd be darn proud of us and her grandkids, if only Alzheimer's didn't take so much away from her life, and ours.  She was an amazing Mom by example and by believing each of us could be and do anything. She loves us dearly and so there we were, her three children supporting each other and showing her the unconditional love that she showed us.  What goes around comes around, let's just hope and keep working for a cure so that it's the love that is handed down and not Alzheimer's.

Paul, Lois and David today

y

and in 1970

Still Peggy

Yeah!!  Julianne Moore won best actress for Still Alice.  This movie has really raised awareness for the disease.  So, the Alzheimer's Association is doing a camaign called #still...
encouraging people like us to post pics of our loved ones with ALZ.  So, I thought we'd participate because the whole point of my blog and Facebook is to do exactly what the movie is doing.  Show people the real face of ALZ.  I loved Julianne's speech when she said that "People with Alzheimer's deserve to be seen. " That's my whole reason for this blog.

But, Oh, Ugh, how do you take a good picture with someone with Alzheimer's Disease?

Smile? Say Cheese? Look somber, morose, sad, serious, very serious, lightly serious?  How about bunny ears behind her head? Happy? Laughing? no, delete. delete. delete.  My hair looks funny, I look old, too smiley, my hair!  Stop.  Not about me.  How does Peggy look?  same. same. same. "Mom! Open your eyes."  Okay, let's try this again.  click. click. click. click.  #stillPeggy #mybrain

#stillPeggy #mybrain #endalz

My 7 year old daughter just woke up and came over to the computer and said
"That's a terrible Picture."  Yeah, it is, and Alzheimer's is a terrible disease. #ENDALZ

Oliver Sacks and his entrance into knowing his fate.

Oliver Sacks has always known what to say to me throughout my life.  I wish him well on his final journey, and thanks for always keeping my mind open and full.


Oliver Sacks on his diagnosis with terminal cancer

Paper Work

I've been advised to contact and make funeral arrangements and make phone calls to be prepared... for what?  This was 2 months ago.

Happy Moments in Time

Gidgey lost her front tooth!  She looks so different and cute.  It's a big milestone in her life.  She's 7 and she never will be again.  We love her so much.  She is so goofy and jumpy and darling and smart. We took pictures and laughed.  She made a note to the tooth fairy and brushed her teeth, and now she can't pronounced f's or th's.  Looking at her makes me smile.  I wish my Mom was here.  I wish we could call her like we did her other grandparents.  I think to myself, "Nana would love this!"  These are her type of moments.

Of course, we can call her. She's here...alive. Yet she's completely unaware of anything new.  Life, for all intents and purposes, has stopped for her. She's missing these special moments that become our most precious memories and help us deal with the passage of time.  Soon a big new tooth will grow in the empty space and Gidget will be 8 years old. Then 9. And 10...

I haven't been able to share anything new with Peggy for years now. Knowing that she can't enjoy these simple things is what made me sad tonight as I gazed into that bright, shining, toothless face.  I can tell her about them and make believe that she somehow understands.  I guess it's just hard wishing someone was here, when they are.