Alice got behind

and needs to Ketchup!

(ah go ahead and groan!)

A lot has happened since I broke Mom out of Rehab July 16th.  

• She does laps with the walker . . . she is still dependent on the wheel chair, but since home care ended I have kept up with it almost every day.

I did mention I'm the short one in the family, right?

• She starts at an out-patient therapy facility this Friday, where she will be able to work up to stairs.
• She sees the new Primary Physician Thursday.
• She's gone out to restaurants, shopping and had her hair done.

we have appetite!

• She wants to try normal seating around the house.

nap time

Go Tigers

I have been busy too.  Once I had things figured out and running smoothly, I needed SOMETHING to do.

I decided to "brick and block" Mom's front gardens, at least up to the temp. ramp.  Of course this also required the ripping up of the black plastic edging, laying new weed block fabric, mulch and lava rock.

Ok, here's the "what was I thinking when I decided to do this?" These are the "bricks I used . . . they are top stones for the retaining wall blocks.  Used fewer, cheaper, and could bring to level of the blocks.  Insane to hand dig that deep while avoiding plants.  I did dig out some and replanted after.  My arms and hands STILL hate me!

I will finish this when the ramp comes out.

2 funerals for young people . . .

Honest, this is not the lounge at the funeral home  . . .  it is the Mc D's across the parking lot. Gee, wonder who owns/manages this franchise location.  (at least they had the exact same decorator!)

Two things Brother and I have discussed.

1. I am probably here for the duration.
2. Let's just go ahead and put a ramp in the garage.  We will most likely have the temp. out before the snow flies, but there is the future, and NOW is the time to do it.

I'm thinking of maybe advancing my education once I get her back on her feet.  Most likely work on converting my Education degree to nursing.

It would be nice to go back Home to MY job with something more to offer them.  They have been so supportive . . . besides it would keep up my CEUs, make my Mom happy, and keep me busy and not insane.

   

I would have considered going back to the agency just to do a few nights with my young man, but alas, he had to move on this week . . . and is playing hockey in heaven.  I'm going to miss that boy.

moon, and memory,

were You there?

I asked my Mom today,

if 

when she had her massive stroke

in 2004

she remembered  me

being there.

I could see her struggle, she wants to,

she REALLY wants to.

She timidly nods yes and says, "I       think      so."

Like a child asking about "proud parent" milestones they can't possibly remember, but like to hear the tale retold . . . 

she would ask me about what had happened.

I would tell her how Dad found her at 7 am by the just made bed.  He called 911 and trailed her with dear friends through 3 hospitals.

How I was called at 3 pm, made all arrangements, grabbed clothes, Jack, and hit the road by 8 pm.

How I arrived at the Condo by 10 am, showered, walked Jack, and said to Dad, "I hope you can drive, cuz I've been up since 7 am yesterday!"

How we arrived at the Neuro-Trauma unit at the DMC, and I sent him ahead to her room.  I with my nurse's bag of what not, went to the nurse's desk, for all the world looking like someone checking out job opportunities.  What types of injuries, expected outcomes, staff to patient ratio . . .etc.  Prognosis was chief goal.  I wanted to know THEIR expectations.  (in blunt terms . . . exit in a black bag or a take-out box of salad for a nursing home)

How I found her there, "sleeping," with lots of monitors and IVs, but only a feeding tube in her nose.

How I explained, with my older brother, to my younger brother over the phone, that she was going to keep THAT feeding tube until she had HER 72 hours to recover from the initial trauma of the stroke!  (we had grown up, seriously--I'm talking elementary school here, at a dinner table where we often discussed Death, Body and Organ Donation, Medical Treatment, Extreme measures and what was desired in these areas.  We were a strange family!)  He agreed with our reasoning . . . once explained.

How at lunch I explained to Dad and Sr. Bro what the Units expectations appeared to be.  We discussed our expectations for her to go to "boot camp" (Rehab.) and started working on a sensory stimulation bag "grocery list."  (favorite perfume on a bright scarf, square of sandpaper, cotton ball with vinegar, individual family pics, cards with names and identifiers, etc)

How we turned down a STUDY that would have involved testing of a kind she HATED.  (but she won't know or feel a thing!  don't care, she wouldn't want it)

How that night Dad and I started going over ALL the pics taken on our family trip to Mexico, just a few months before, and printing up 8X10 individual pics of all of us.   

How we wrote up index cards with each of our names and more index cards with identifiers.  (if asleep, on the wall so staff knows us and WHO my Mother was, if awake, to read grand-daughter and identify that picture)

How we then crawled into bed at 1 am.

How (post 48 hours since initial event) we came in the next morning to find her sitting up in a cardiac chair (with no seat belt or bed side table that would fit over it) eating applesauce.  The PT and OT told us how when they were called that morning for an evaluation of a patient in Neuro-Trauma, they had to ask directions since they had NEVER been to that Unit.

How stunned Nurses, Doctors, and Medical students kept coming by treating her like a celebrity.  (really, they hardly seem to care whether she could do anything . . . just that she was awake and eating applesauce by herself)

can you REALLY blame them for there original prognosis?
THEY didn't know MY Mother!

How she would look at us, nod, smile, but obviously not able to understand a word we were saying.

How 4 days later I walked with her, on a gurney, to the Rehabilitation Institute of Michigan through the basement corridors of the DMC.  Dad, meanwhile moved around the block, the car with the suitcase we had packed 5 days ago, ready and in the trunk.

How 1 day later her whole family had gathered.  (Jr. Bro and family now in from California . . . they trusted me to say "when" or "NOW")

How another day later I, having finished my Critical duties, would return home with Jack.

Her Therapy goals, 6 weeks worth, were written up, and two days later she had met all but the speech goals.  To keep her there for more speech, PT and OT realigned all their goals towards communication.  (for example: walk to all the offices, get lunch orders, make up the sandwiches in the kitchen, and deliver them)

I came back two months later . . . she picked me up at the airport, she cooked and served a five course meal. (They REALLY didn't know my mother.)  We went back to the Neuro-Trauma Unit where the Staff excitedly had their FIRST visit from a former patient

She has heard the stories, she has seen the pictures of me at her bedside, she has seen my notebook full of notes . . . I don't think she remembers me there.  The rest of the family, she remembers, visiting during the 6 weeks in Rehab.  I wasn't there.

I don't think it matters.  She knows I WAS there.  She knows I WILL be there.

She has Faith

in me

I have faith too.

The night before her stroke, my parents flew in from a two week vacation in Greece.  They were there for a tour, and then stayed on a ship in Athens Harbor for the first week of the Olympics.

What if . . . 

instead, just 10 hours later.

must leave you

Anniversary

Yesterday the Family celebrated the Anniversary of Dad's passing, by going to his favorite Mexican Restaurant.

He went there every Monday with Mom for lunch.  They ALL knew exactly what to bring to the table --SOUP bowl of HOT hot sauce, water with lemon, lots of napkins, Cheese Enchiladas with more beans then rice on the side.  Mom varied a little, but usually Shrimp Fajitas.  Me, plain cheese burger medium with NO vegetation.  (odd how often you have to explain that french fries and ketchup are plant material, but then I can still manage wheat and therefore the bun!)

A good time was had by all.

I love you Dad.

time," interupted

Epiphany

e-piph-a-ny

a sudden, intuitive perception of or insight into the reality or essential meaning of something, usually initiated by some simple, homely, or commonplace occurrence or experience.

BEFORE

AFTER

As a daughter I was appalled at my Mother's weight loss and the apparent obliviousness of the Rehab nursing staff.

As a Nurse, frankly, I was puzzled.  I had talked to these nurses over the phone quite often.  Granted we mostly discussed medications, but I thought we were on the same page.  They did get the Rehab MD to discontinue the Florinef, (retain fluid until you drown med), as I requested.

And then the 

Eureka Moment!

The third home visit wasn't our regular Home Care Nurse.  

I quickly realized this nurse believed Doctors are Gods and can do NO wrong.

(one of our issues with the OLD cardiologist . . . after, my brother sat with Mom in the hospital to write up her CODE requests, properly signed, co-signed, and witnessed . . . my brother left to run errands . . . the nurse called him back.  The cardiologist had disposed of the LEGAL/binding just signed paper and ignoring other legal paperwork mother had drawn up with a lawyer previously, made her a full CODE.  We redid the CODE paperwork:  My Mother-competent, My Brother-power-of-attorney, Myself-sleepy medical-power-of-attorney on the speaker phone, Director-of-Nursing, and floor Nurse.)

Her take on his activities, was that he had a problem with the hospital staff.

Huh?!

She also obsessed about my Mom needing to lose and not gain water weight because of her Congestive Heart Failure (CHF).

NO NO NO

drug induced!

now off drug!!

Ahhh Hah!

The Rehab nurses must have also been obsessed with CHF and cankles.  They probably kept telling Mom she needed to lose water weight.  She heard . . . you need to lose weight.  They put her on a low salt diet and fluid restrictions, AND she QUIT eating much.  She wanted something to drink, hated the food and was trying to do what they wanted . . . lose weight.  

At some point they should have stopped being so excited about Mom losing "water" weight and realized she was below ideal body weight.  (she still had cankles . . . as do I, but by now she had NO energy to do her exercises and wasn't moving as much.)

There, that was my epiphany.

Time to move on.

sigh.

within her reach

Go!

week 3

We scheduled nothing for the day of her appointment with the new Cardiologist.  Nothing . . . except the shower.

just need to set up

She was quite nervous about it, although I kept trying to reassure her that I knew what I was doing.

after, I still needed to dry the floor even though I used one shower door during the shower. The plastic bag allows easy rotation once on the chair.

I miscalculated the placement of the tub mat and her one foot stepped off, but I blocked it with my own.  (we've done this a few more times since with absolutely no problems)

doors off, Mom in, door on, shower, door off, Mom out.

Mom admitted it wasn't as bad as she thought.  No new bruises, No skin tears.  Whooo-hoo!

Mom LOVES her new Cardiologist and He is fascinated by her and her abilities, (I carry a still of one of her scans showing the damage from the original stroke).  He talked to her, he listened to her, and was thrilled when he got the gist of her meaning.

  

We have a Cardiologist after our own hearts!

Y

By the end of the week, OT upped Mom to 3 pound weights on her arms as she does her exercises.  OT is planning to release after only 2 more weeks.

PT is planning on starting her on walking with the walker beginning next week.

He's obviously working hard while she does her leg exercises with one and 1/2 pound weights on her ankles.  He learned not to lean over her when he realized that she was starting to aim for his head with her legs!

I knew she was feeling more herself when she started muttering about the PT when he wasn't around!

saucepans, plates, and dishes.

get set . . .

week 2

PT started his work, and wondered what had been done in Rehab.  I had heard both from the Rehab and visitors, that much had been done.  I suspected it was more a loss of nutrition.

L

OT starts her work, and almost cries at the purple across Mom's arms.

L

The Nurse weighs her with me, on the scale in the kitchen.  I balance Mom, and she reads the scale, (I couldn't possibly do both!).  BP low side of normal, ankles improving, lung sounds good.

K

Jim and Dave build the Deck so I can get Mom out the front door and to the OLD MD office.

yep, that's Jack and Pepper

Didn't they do a beautiful job?  Check out the smaller ramp . . .

A handle!

and wheels . . . COOL!

What a fantastic job they did.  The larger ramp, we will also be able to pick up and store in the garage until needed again.  (repeat after me . . . WE WILL NOT NEED A PERMANENT RAMP.)

She's going OUT!

I do her hair and dress her nice and warm, (Yes it's the hottest July EVER, but she has NO insulation!), to go to the OLD MD office to transfer her files.  (No we haven't told either Him, cardiologist, or his Wife, primary doc, that she is leaving them.)  We glide down the ramp and off we go.  We do say good bye to a favorite Tech in the office and whisper our reasons and where we are going.  She is sad to see us go, but is very enthusiastic about our choice of NEW Cardiologist.  She remembers him as a resident at one of the local hospitals.

We manage to beat the rain home . . . in more ways then one.

the fire-irons came first

on your marks!

week 1

The Rehab had already booked out patient care:  care check Nurse, Occupational Therapist (OT), and Physical Therapist (PT).

a

I called Jim the Contractor, to have him come by and build a temporary ramp out the front door.  (the condo assoc. allows a temp. ramp out the front door for ONE month, after that if there is still a need, a permanent ramp can be built . . . but it MUST be in the garage.)  I asked for a short ramp from the threshold that would be portable and a 2nd ramp that would be supported by a cut-out of the stairs.  (the short ramp could be put in the car and used at my brothers house to get Mom in their house.)

a

I started calculating what it would take to get Mom in the shower.  Rolling shower doors can be removed.  Already have a shower chair. Something to keep her damp feet from slipping on the vinyl flooring . . . hmmmm.  Ah hah, a tub mat with the suction cups on the bottom.  I don't imagine the ever envisioned it used outside the tub!

a

I called and made an appointment with the NEW Cardiologist I had chosen, but want to take Mom to the OLD office to sign for the record transfer, so they have it in time for her appt.

a 

she began shrinking

shocked

She looked wretched 

Cheeks are sunken

Dark circles about her eyes

Her arms were bone thin and a patchwork of purple

She began to cry 

I signed her out.  

No one asked to show me 

or 

if 

I knew how to transfer her from wheelchair to car, etc.

I placed her in the car, returned their chair, and headed for "home."  

I got her out of the car and into the wheelchair my brother had acquired.

I got her up the 3 stairs and into the house . . . somehow and without injury to either of us.

When I texted this . . . my S-I-L said she considered that a miracle and that she had had no idea how I would accomplish it.

She had NO interest in food.  

I pulled all the frozen meals out of the freezer, that she had bought herself.  None looked good to her.  I begged and pleaded for every bite.

The Home Health Nurse, (two days later), and I managed to weigh her.  After two days of eating half a Lean Cuisine, (and you know how small those servings are), at each meal, with snacks in between, (half a small banana, half a container of applesauce, half a container of pudding, etc.), she is missing at least 20 pounds.

I guess I know why she has no energy.

I guess I will be here longer then a month.