~FIN~ goodbye Mom

My mom died June 7, 2015.  Her cancer had briefly gotten a bit better in April around her 70th birthday, but then it came "roaring" (per oncologist) back over just a week, while she was undergoing chemotherapy.  The last month of her life, she couldn't eat anymore and threw up constantly.  The cancer strangled her digestive system, effectively shutting it off.
She fainted on Memorial Day, falling and breaking her jaw and several of her teeth.  She came home from the hospital after that on TPN, IV nutrition.  An old friend of mine agreed to take my mom's elderly dog for the rest of his life so he lives with her in Rhode Island now.  He was just too much work for someone so ill.
She was on the TPN only a few days.  Finally the doctors had hit upon the right combination of drugs to keep her from constantly vomiting.  On that last day, my husband and I were there at 2 p.m. and she was eating some Italian ice.  She said she felt a bit weak but she had her cane.  She was hardly throwing up.  She had a doctor's appointment in 2 days, to talk about putting in a feeding tube and a gastric drain (she was throwing up stomach bile, as it couldn't drain into her strangled intestines).
I came back at 7 p.m. to hook up the IV nutrition and found her dead--she had been in the middle of putting on her pajamas.  From what I saw and what the paramedics who responded to my 911 call said, it seems like it was a sudden, instant, catastrophic event.  Stroke, heart attack, blood clot?  She did hit her head, but there was almost no blood.  The medical examiner signed off without having to autopsy her so we'll never know for sure.
She was buried with my father's ashes, next to her parents and her mother's parents.

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The eulogy I wrote:
When I was little, sometimes my parents would leave me at my grandparents’ house for the weekend. There, I’d get to sleep on a camp bed in the living room and the ghost of Mrs. Winters would tuck me in. The reason I slept in the living room is because that’s where the picture of my mom was. I’d be okay with my grandparents, until I saw that picture. Then I would realize my mom wasn’t there with me, and I would cry and cry and hug the frame. That’s how I feel now, every time I open Facebook and there’s my mom’s picture on my wall. The child of 40 years ago, that still lives in me, reacts: My mommy isn’t here! I want my mommy! Only now, there is no telephone to where she has gone. No reassurances that she’ll be here tomorrow and everything is okay. Because she won’t be here tomorrow and right now everything is not okay. 
My mom had her moments, but mostly she was generous and kind. She adopted my friends as surrogate children. One of my friends asked her to make a very difficult cross stitch piece. It took her four months and all she asked for was that my friend buy the colors of embroidery floss she didn’t already have in her vast stash. Her house is filled with quilts of all sizes and colors, items she painted, embroidery, and more. She loved her little dog fiercely, even when his advancing age made him difficult to care for, and it broke her heart to send him to his new, final, forever home two weeks ago (where my friend is spoiling him and loving him for the rest of his life). Her cat was always with her in her last days, on her lap or curled up on the other end of the couch, just watching her. He lives with me now. 
My father’s long illness was horrible for all of us, but she cared for him with dignity as long as she was able and mourned him fiercely when he finally left us forever. My grandma was a difficult woman, but my mom lived with her for years before her death and made sure she had everything she needed. 
And somehow, in between caring for two sick people and making hundreds of quilts and cross-stitch pieces and painted pots, she read voraciously, swapping books with me and visiting the library almost daily as part of her long walks—up to ten miles a day when the weather was good. People would say, “I think I saw your mom walking…” somewhere across town and I’d say “Yup, probably.” She made many friends during those walks, people who also walked, and would join her on one leg of her journey. 
That’s what we all are, in the end. We all walk alone, from birth to death, but people join us along the way. My mom’s path has diverged from ours, but who is to say that it won’t connect again, somewhere on the other side of time? 
This is from King Edward VII’s eulogy: 
Death is nothing at all. It does not count. I have only slipped away into the next room. Nothing has happened. Everything remains exactly as it was. I am I, and you are you, and the old life that we lived so fondly together is untouched, unchanged. Whatever we were to each other, that we are still. Call me by the old familiar name. Speak of me in the easy way which you always used. Put no difference into your tone. Wear no forced air of solemnity or sorrow. Laugh as we always laughed at the little jokes that we enjoyed together. Play, smile, think of me, pray for me. Let my name be ever the household word that it always was. Let it be spoken without an effort, without the ghost of a shadow upon it. Life means all that it ever meant. It is the same as it ever was. There is absolute and unbroken continuity. What is this death but a negligible accident? Why should I be out of mind because I am out of sight? I am but waiting for you, for an interval, somewhere very near, just round the corner. All is well. Nothing is hurt; nothing is lost. One brief moment and all will be as it was before. How we shall laugh at the trouble of parting when we meet again!

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I keep wanting to tell her things, so I started a Tumblr where I can record the random things I want her to know.

Dementia on Pinterest

I'll be posting interesting things about dementia and Alzheimer's on Pinterest.  See the sideboard or below. 

My mom has cancer

My mom has stage-4 ovarian cancer.  I have no time to devote to this blog as it's taking all I have, and more, to give her the care she needs.  She's not terminal at this point; the doctor believes she can live 5 years, but she first has to survive chemo, surgery, and more chemo, which is going to be a battle into next spring. 

I will never take down these pages as long as I believe that my dad's story helps others.  He's been gone almost 7 years and I miss him every day, but I'm glad he's not here to see my mom so very ill.

Hug your parents and tell them you love them.

If you need to reach me, you can e-mail geverabert at either yahoo or gmail.

Thanks for reading.

--Bert

"stand your ground" follow-up

Back in December, I wrote about the sad case where an elderly Alzheimer's patient was shot to death under the "stand your ground" law, which allows you to shoot basically anyone you feel like shooting if you can claim you are threatened.
To quickly recap, Mr Ronald Westbrook was wandering at night with his dog, lost, and went to the wrong house.  The people called the police, but then also went outside and shot the old man, killing him.
Now the DA has decided that this sort of behavior is perfectly acceptable and no charges are to be filed against the cowardly young man who was afraid of an old man.
I know all too well that all Alzheimer's patients are not innocently befuddled forgetful angels.  But in no article I've read has anyone suggested that Mr Westbrook was angry or threatening or in any way attacked his killer.  In fact it seems that his only menace was lack of response.
The District Attorney's office says they will not pursue charges against Joe Hendrix in the 2013 shooting of Ronald Westbrook. D.A. Herbert "Buzz" Franklin sent a news release Friday, explaining the details surrounding the case that touched on the "stand your ground" laws.
This sets a terrible precedent.  I am deeply saddened for Mr. Westbrook's family.
original article | screencap

Look at Them Swim

This is the essay I submitted to Chicken Soup for the Dementia Soul.  I did not hear back from them, and the book comes out on 4/22/2014, and you're supposed to hear back two months before.  So here it is for your enjoyment, and  you don't have to buy the book.

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Look at Them Swim

Dementia is a terrible disease and as it progresses, most days are filled with incidents we’d rather forget.  But every once in a while, there are brief moments of joy and laughter.
My dad had Alzheimer’s for four years, and his first symptoms were speech-related (aphasia).  As the disease progressed, what he had to say became more and more random and often unintentionally hilarious. 
Some people have said, “How could you laugh at your sick father?”  Those people have never lived with someone who has dementia.  You take the fun where you can get it. 
His lack of connection to the real world sometimes made him adventurous.  We’d take him out to eat and he’d look at the pictures on the menu. 
“What do I eat here?” he would ask us, pointing.  “Do I eat this?  Does this one go with that one?” 
“You like this one,” I’d show him.  “Remember?  We used to get it when we went on vacation in Plymouth every year.”
“Oh, the beach!  I like it there.”  And he’d be off, talking about the beach we visited every summer for thirty years.  How we would walk around in the tidal pools at low tide looking for starfish and sea urchins and once in a while even a lobster.
Meanwhile the waitress is waiting, looking annoyed.
“So do you want to eat this?”
“Yes!”
“He has Alzheimer’s,” I’d explain, and order his food for him.  It was always amazing how people who were impatient or angry with my father’s weirdness changed instantly when I said that, often going out of their way to make sure he had a good time (even if we were just at Home Depot buying some nails).
Once the food came, my father would look at it doubtfully.  “I don’t think I like this,” he would complain.
“You do,” I would assure him.  I never ever lied and made him eat something he hadn’t liked before.
“How do I eat it?”  Sauces and side dishes confused him.  “Does this go on here?”
I’d show him the “right” way and he’d eat some of the food, and then his face would change.  “I remember this!” 
He knew, you see, that he had Alzheimer’s.  He didn’t ever seem to understand what it was, though.  He called it “this thing in my head that’s killing me” and carried around a scrap of paper on which he had carefully written ALZHEIMERS in his precise block printing, that he could show people.  Then he would display his Safe Return bracelet, and if I was there, he would point to me and say, “That one gave this to me” like it was a prize. 
He knew he couldn’t remember.  He knew he didn’t understand.  And when he did remember, or understand, he would be so happy.
“We eat this at Plymouth!” 
“Yes, we do.  It’s good, isn’t it?”
And he would be happy, for a little while, and so would I.
I don’t know when he forgot who I was.  My name left his head very early, along with all names.  I was “that girl.”
He didn’t know who I was, but he knew he liked me.  If he was out with my mom and they saw an SUV like mine, he would get all excited and point. “Is it that girl?”  If he saw an overweight redheaded woman on TV he’d think it was me.
He was injured one night while I was visiting—he got in the middle of a fight between the cat and the dog—and the cat opened an artery on his hand.  I used first aid to stem the bleeding until the paramedics arrived.  When they did, and fixed him up, he pointed to me.  “This girl, she helped me.  She saved me.” 
When I left that night, he followed me out to the car and very shyly asked me for my phone number.  “In case I get in trouble again.” 
I wrote my home, cell, and work numbers down. 
He stared at the paper and then at me.  “I know these numbers,” he said slowly.  “I know YOU.”
“Yes, you do,” I said gently.
As his disease, and his aphasia, progressed, conversation became more difficult.  I used to call it Alzheimer’s Mad-Libs. 
I called looking for my mom and my dad answered.  
“Bob,” I said, “Where’s Ann?”  Dad and Mom were concepts long gone.
“Oh,” he replied.  After a long time, he said, “She took the thing to the place, for the, you know.”
“Tell her I called.”  I tried fruitlessly to explain who I was.
“Okay.”
When my mom got home, of course he said, “They called.”  She had no idea who. 
Meanwhile I’m at home playing fill-in-the-blank.  She took the dog to the vet for shots?  The car to the shop for repairs?   Grandma to the doctor for her eyes? 
My mom got Caller ID after that.
We had a dachshund and a tuxedo cat, raised together as best friends, who had both died not long before his diagnosis.  I’d bought them a Siamese cat, but my dad missed the dog.  When he took walks with my mom, he would approach every dog and think it was his.
My mom did not want to start over with a puppy, not while dealing with early-onset dementia (Dad was 63 at his diagnosis).  I found a nice older rescue dachshund in Massachusetts and arranged to go pick him up.  The day before, my mom bought a leash, collar, bowls, and toys. 
My dad piled everything by the door. “Take it all back,” he said.
“Don’t you want a dog?  You miss the dog.”
“No.  Take it back.”
We decided to get the dog anyway.
The three of us drove 90 minutes to the rescue place.  We gave a donation and loaded me and the dog into the back seat. My dad kept turning around to look at the dog on the way home.
“Can I pet him?”
“Yes, you can pet him.”
Nothing about taking the dog back or not wanting a dog, of course.
He’d pet the dog, stare at him, stare at me.  Finally he said, “That’s a nice dog you have there.”
“That’s your dog.”
“My dog?” His whole face lit up.  “My dog?”  He was like a child at Christmas.
When we stopped to walk the dog at a rest stop, my dad couldn’t stop petting him. 
“Do you want to sit in the back seat with him?”
“Oh yes.”
All the way home he hugged that little dachshund.  When he was dying a year later, I brought his dog to him.  He had been unresponsive for days, but he moved his hand and put it on the dog’s back and kept it there until I took the dachshund home.
My favorite memory of him is when he was looking out the window at Mom’s flower garden, where beautiful butterflies fluttered among the colorful blooms.  He pointed and said, “look at them swim!” because he had forgotten the word “fly.”  He loved butterflies and I dearly hope that wherever he is, he is swimming with them right now, and that he is glad that when we remember him, we laugh.