Keep Breathing

Erica K

Erica K
Location
New Jersey, USA
Birthday
September 26
Bio
Grew up in Jackson Heights, New York, but now live in Jersey. Married and the proud owner (servant?) of 4 cats, including a little blind guy named Quincy. Jobs have included: English teacher in U.S. and abroad, cabaret performer and member of a NYC sketch comedy troupe; now a full-time legal secretary and freelance writer. Other jobs: canvasser for NYPIRG/cannery worker in Naknek, Alaska (a fisherman told me it was "the ugliest part of Alaska")/dog kennel cleaner/member of the swine and poultry crew on a California farm. This year a memoir piece will be published in Telling Our Stories Press and poems in The Awakenings Review. Currently working on a one-woman show. "Ever tried. Ever failed. No matter. Try again. Fail again. Fail better." Samuel Beckett

MY RECENT POSTS

Erica K's Links

Salon.com
Editor’s Pick
NOVEMBER 9, 2011 11:12AM

Mama Don't Take My Wheelchair Away

Rate: 20 Flag

“Kodachrome
They give us those nice bright colors
They give us the greens of summers
Makes you think all the world's
a sunny day
I got a Nikon camera
I love to take a photograph
So mama don't take my Kodachrome away.”
  

               Paul Simon

I grew up with Paul Simon.  Like me he grew up in Queens, though he was born in New Jersey.  I was born in Manhattan but grew up in Jackson Heights; his music spoke to me.  He and Art Garfunkel lived blocks away from each other.  When he sang “Me and Julio down by the schoolyard,” I envisioned the schoolyard at my elementary school, Blessed Sacrament.

I thought about the song "Kodachrome" after seeing mom in the hospital yesterday.  On Saturday, she fell out of her wheelchair at the nursing home and bumped her head.  She was shaken up and bruised, but they assured me she was okay.  As a precautionary measure she was taken to North Central Bronx Hospital for a CT scan and the scan came up clean.  They did, however, diagnose her with pneumonia.  I was stunned.  When I saw her on Thursday she had a slight cough and was complaining about a cold that “wouldn’t go away,” but I never would have suspected pneumonia.  It took almost a half hour to find out where she was at the hospital—the typical bureaucracy—but I did ascertain she would be admitted.  No word on her condition except that it was “stable.”  Patient confidentiality and all.

I went to see her yesterday and she told me the pneumonia was only in her right lung.  I spoke with her doctor and he assured me that it was a mild case of pneumonia and she would be released in a day or two.  Whew!  With Alzheimer’s patients, pneumonia can be the precursor to death.  It’s grim, but true.

She was tethered to a chair with canvas straps like a mental patient, just as they did to her at Jacobi Hospital in May.  A sign on her door had said “Fall Risk.”  An IV was dripping antibiotics into her system.  Her hair was unwashed, but she didn’t look bad.  Her chief complaint was that she could not “move.”  She said she couldn’t get her “work” done, meaning her daily exercises.  At the nursing home she walks with a walker about 75 feet a day and zooms all over the floor in her wheelchair until she tires out. 

This is a woman who used to walk for miles, who took the subway into Manhattan fully made up in hat and heels and went to church then Bloomingdales then Food Emporium for a few choice items.  Totally independent except for the bill paying, which I took care of.  Just last year she was walking, no longer going into Manhattan, but nonetheless, mobile.

When I first got her the wheelchair in the spring, she hated me, saying that it was my fault she couldn’t walk.  I knew it was the Alzheimer’s talking, but it stung.  She stayed at our house for Easter weekend and hated using the chair, but didn’t want to leave our house.  Now she can’t live without it.

Yesterday she said, “Get the scissors, so I can cut this.”  I wish I could have cut those damn straps.  I told her we didn’t have a pair of scissors but I would ask about a wheelchair.  I loosened the restraints as best I could. The doctor said it was unlikely they would be able to provide her with a wheelchair since she was not expected to be staying long. Who knows why they can’t or won’t provide one.  She kept pushing forward in her chair, gripping the sides and making a motion as if wheeling herself, trying to propel herself into motion. 

I imagined her tearing off the restraints like Superwoman, leaping up and dancing around like she used to do in the living room in Jackson Heights.  She’d kick up her heels to show tunes like “Paint Your Wagon,” her flip flops flying high above her head.  My brother and I found this hilarious.  She totally gave herself over to the dance.

I said, “Mom, the chair won’t move.”

She grimaced at me.

“I’m sorry, you’ll be out of here soon,” I said.

She asked about Mouse, her stuffed animal kitty and I said she was fine and on her bed in the “other” room. I brought her a Snoopy doll that played the Peanuts theme; she liked that.  We shared coffee and a turkey bacon wrap from the cafeteria.  It was good to see her eat.

We watched an animated production of Cat in the Hat on PBS.  I surfed channels after she got tired of cartoons and found Rocky.

Her face lit up and she said, “Keep that on.”

“Do you remember when we first saw this?” I asked.

She said yes, and “I think I liked it.”

She said, “Get me the needle,” and started pulling at the straps again.

I called mom this morning and she was very upset, talking about the wheelchair again.

“I need to move,” she said.  “I can’t stand this.”

I told her it would only be another day and that I’d be coming by this afternoon to see her.

Who knew that mom would grow to love the wheelchair?

I still don’t know how to embed YouTube videos, so bear with me.  Paul Simon singing "Kodachrome" below:

http://www.youtube.com/watch?v=pLsDxvAErTU

Your tags:

TIP:

Enter the amount, and click "Tip" to submit!
Recipient's email address:
Personal message (optional):

Your email address:

Comments

Type your comment below:
shit ericka this sucks! "health care" sucks. I just cant believe the only thing they can do is tie her down. how fricking unimaginative.
I second what Janie said, Erica. Your mom is blessed to have you near.
This reminds me of so many sad images from my mom's final days in a nursing home. I hope I'm one of those people who just keels over one day.
Hi Erica, Hospital care can be scary. Your mom is very blessed that she has you to watch out for her.
Hi Erica, Hospital care can be scary. Your mom is very blessed that she has you to watch out for her.
Jane, thanks. I despise the medical profession for the most part. I find the strapping of patients to beds to be barbaric, but since she doesn't have a 24 hour nurse or aide, that seems to be their only recourse. If she falls again, they could be in serious trouble.

Snowden, yes it does. Now it turns out she'll be there through the weekend at least. She contracted a blood infection.

Thanks, Matt. God bless.

Me too, Pauline. This is grueling way to go.

Thank you, Joanne, for your kind words.
Can anyone instruct me on how to embed a you tube or other video? Never could figure it out. Thanks. -E
Hi Erica,
For embedding a video, check your pm.
I read this much earlier and was sidetracked by searching the instructions to help you, so my comments got way laid. Meanwhile I'm glad your piece received an EP - It's touching, brave, and brings home the realization once more that our roles are reversed as our parents turn more into children and we into their care takers and decision makers. I admire your courage and determination. Wishing you and your mom the best and hoping her speedy recovery from pneumonia.
♥R
Thank you, Fusun. She has a blood infeection now, so I'm a bit concerned. It's been a rough time. xoxo
So heart-breaking. Falling in slow motion.
What? They strap her to the bed? Oh, Erica, I can only imagine how this hurts ... not only your mum but you too. Shit. I am sorry.

I'll hold you and your mum in my prayers tonight. I hope all will be well. Take care, lovely one.
It has to happen sometimes. In danger of falling, confused and hurt. Even a 24 hour caregiver cannot watch someone all the time. There are chemical restraints too. I know too much from being in the medical profession but I do know that they try very hard to help everyone and keep them safe. She is so lucky to have you there asking questions and bringing in personnel life to an institutional setting. No matter what happens keep calm and smiling. Your mom needs that more than anything else.
I have been very sick for many years and I will tell you how to get stuff done in the hospital. Go to the nurses station and yell - very loud. Call the doctor. Call the head of the department she is in. Threaten to call whoever they are afraid of: the board of directors, the state, whatever it takes. You mom is tied up because it is easier for the staff there that she is tied up, and they won't have to worry about liability because she can't fall down that way. This is abusive. Take my advice - make a scene. It works.
Erica~ I love it when you're on the cover!! I read this, remembering my college days. I used to work at a nursing home to pay the bills, but learned so much about Alzeimer's. It's the medication that makes them jittery, but they must remain in constant motion, or else they feel trapped. They love those moveable chairs!! The hospitals are not as aware of the needs of AZ patients as the nursing homes...as you have seen this week.

Your experience is well-worth the EP, well translated into words... the whole thing is a snapshot of your life, and it is so wonderful to "see" you.

To embed a video, click "share" on you tube, click the 'use old embed code' underneath the details, then copy the "embed code"and then paste it to your post in the html mode. Click 'update' on the html; then "update" on the edit and viola! You have an embeded video!!
Ash, Little Kate, and zanelle, thank you for the kind words.
Zanelle, I know they are only doing their job by restraining her but she is extremely upset not being able to move.

Wren Dancer, duly noted. Thanks for the advice!

Brazen, thank you very much.
Oh, from the moment I saw the title my heart lept for you and your mother. Dag nab it, it's just a wheelchair. I agree with Wren, make a scene. But this is a very scary scenario for your mom, in any case. Keep us posted. We care.
I'm so sorry she is upset. That is when the chemical restraints start to appear. She will be transfered out of the hospital setting soon I hope and find a place where they can have more freedom for her. We had chairs with alarms that told us when a patient was trying to get up and we could go help them. But that is long term care. In a short term facility the emphasis is on safety and curing some heavy duty stuff. A little anti anxiety medicine goes a long way toward peace in the end. I do not like the idea of yelling at the nursing station like Shirley McLaine in that movie. But asking for things and working as a team and realizing where she is right now and why helps everyone.
They can come up with widgets and all sorts of amazing online gadgets... Can't they come up with more humane ways to treat people in distress.?Nauseating. Simon and Garfunkely have always spoken to me like crazy. I'm also a queens girl( Belle Harbor and then Fresh meandows and Forest Hills. Lived in Brooklyn from birth to 5 though,) but I never associated that part of it with my adoration of thier music.

So sorry, Erika, that you and your mother have to endure needless indignities. Occupy healthcare- let's all fight for more humanism etc.
There seems to be so much denial, or is it "kicking the can down the road" syndrome with regard to the way elderly people are taken care of. I'm speaking collectively here, not about any particular individual.

When you write about the woman your mom used to be, it's obvious that no one, least of all she, thought that she would be where she is now. It's true with all of us, isn't it? We live in our bodies in the present moment, and it is almost impossible to imagine ourselves in that place. So, we just deny that it's going to happen, until it does. And society as a whole is never prepared to deal with it. With the thing that is going to happen to most of us.

God, I don't know if that even makes any sense. It's overwhelming just reading your account of it. I hope I can live through it when the time comes with my parents and my husband's parents, and then when it happens to me and him.
First, no one better than Paul Simon to bring back memories, I love the guy. A hospital is a subjective and very complicated experience. The only thing to do is to be there, literally, for a loved one. Excellent piece, Erika, well said. R
I was in the room with you and your mother! All kidding aside, Paul and Artie belong to me....sorry!
Helvetica, Thank you for caring. Mom had a really bad day on Wednesday --she was crying when I got there and didn't understand why the doctor kept taking her blood and why they wouldn't let her move around. Last night I was there after work and it was a totally different mom. She was calm even though she still had no wheelchair and when I told her I noticed she was feeling better she said, "It doesn't matter today," and smiled. I brought her a quarter pounder with cheese and a chocolate shake, at her request and we ate dinner together and read some Emily Dickinson poems.

Zanelle, I agree with you. I am not going to make a scene. The doctor, nurses and aides have been very kind to me and her and they said the wheelchair is something to ask the social worker about, which I may do today when I visit her. Hopefully she will be out soon. She has sepsis on top of the pneumonia.

fernsy, Yay for Queens girls! When did you live there? I agree, we need an Occupy Healthcare, for sure.

Jeanette, you never know what you can handle until it happens. I tried to deny that she had a serious problem (beyond mental illness) for months until I could no longer deny the signs. From then on, it got easier. You accept what is going on as best you can, and put one foot in front of the other every day.

Thoth, exactly. There is no "one size fits all" as far as hospital experiences. Paul Simon is the man for all times and seasons!

Thanks, Cynthia. Ha ha!!
I can so relate to this. My mom had Alzheimer's for 15 years. It's so painful. You're absolutely right, when she was angry with you because she could not walk, it was the disease talking. One of the saddest things about Alzheimer's is that it makes people angry and hard to deal with. Though it sounds like your mother is fairly even tempered. Why on earth is there not a wheelchair nearby? Any hospital or for that matter, doctor's office, that I go to (and I'm going to them a lot) has a wheelchair handy. If they take a patient for an x-ray, they might just as easily grab a wheelchair as a gurney. I would really question that.

I wish you and your mother as peaceful a journey through Alzheimer's as possible.
Thanks, Sirenita. I attribute the dificulty I encountered getting mom a wheelchair to a combinationof hospital bureaucracy and fear on their part that she would fall and they would be liable. At least she's out now-they released her back to the nursing home on Friday. I'm sorry that you suffered through this dread disease with your mom as well.