Day 15 - Diaper changing

I know.  Just the title of this post makes you think maybe you ought to skip this one...

It's becoming a challenge to even decide what is appropriate to post these days! 

So, I was up at 5:00 changing Grandma which has become an emotional battle... for me.  I went out for my morning walk to get my feelings in order and now I'm back.

The goal of Grandma's care, the goal of hospice and of the family, is to keep Grandma comfortable. 

The changing of Grandma is an every three hour process... ideally.  It sometimes becomes once every 4 or 5 hours.  One nurse suggested that the ideal would be every half hour.  On a good night, when Grandma doesn't get tied up in her blankets or hasn't been moaning and groaning too much, I will leave her (and me) to sleep 6 hours.  But the longer I wait, the more of a mess there is.  But that too is really not the problem.

The problem is the pain that Grandma has to take when she is being cleaned up.  Her rear-end is raw and red and bleeding now. The process of wiping is painful but dabbing doesn't do it.  There are creams to be applied and Grandma's moans and groans become louder.

"I'm sorry Grandma but it has be done.  It will just hurt more if I don't do this."

Of course the nurses have given advice and they get the same cries from Grandma when they do it too.  The bottom line is that it has to be done 5 or 6 times a day and as far as Grandma is concerned it is torture.  And it is becoming that for me too.  It really helps to just have Marcy in the same room with me so that she too can coo and comfort my mother and together we can decide when "good enough" is good enough.

See, even three days ago the element of pain wasn't coming into the diaper change.  It was just unpleasant, but now it is harder.  What is Marcy going to do when I'm gone?

We have creams and ointments and large and small diapers, (hoping to contain, not wanting to rub) we have cleaning sprays and a new bundle of wash cloths, basins, waterproof sheets, three sizes of gloves, etc. etc.  The process of diaper changing takes quite awhile (and shedding that layer of blankets always starts with Grandma saying that she's cold) and I fumble around trying to get the order right. 

"Spread the new waterproof sheet first?  Clean off her bottom with wipes, with spray? Which should be first today?  Get the new diaper folded under her first?  No, take off the old diaper first.  No, get that old waterproof sheet off first.  Blah, blah, blah.  I'm sorry, I'm sorry.  It has to be done.  I'm almost finished.  I'm sorry I'm slow.  Wait, turn this way.  Okay, now turn that way.  I'm sorry.  There!  We're finished!"

...At least for three more hours.

And tucked into the blankets again Grandma is finally comfortable.  And probably has forgotten the whole unpleasant process.

"Are you hungry?"

"Yes!  What do you have?"

Grandma enjoys her meals.  And what goes in...

Day 14 - Embroidery

Two weeks have gone by quickly.  Hospice has kicked in and though it doesn't really free up time, it give me a bit of peace of mind.  I realized that I hadn't thought about a post card for my mother this month.  Was I even going to MAKE a card this month?

I'm afraid my creativity is at a low and I haven't had the energy to make something original.  I hadn't been sure if I was going to continue with the Post Cards from Heaven series that Jenny and Allie are doing but as I'd made the January and February cards already March's card was the logical place to go.

I visited Joann's and bought some embroidery floss and found a scrap of muslin from last summer's projects.  I pulled up Grandma's walker and though it is a bit uncomfortable I sat by her bed quietly sewing.  Embroidering by Grandma's bed seems very care-giverish (a new Tanya word) and Grandma occasionally awoke to ask what I was doing.

"Do you do embroidery all year around?  Who are you making that for?"

"No, I sometimes knit and I sometimes quilt and I sometimes do tatting.  Occasionally I embroider.  I'm making this for you."

I even brought out all the two years' worth of postcards that I found on Grandma's desk and Grandma went through them one by one looking at them as if she'd never seen them before.  At each new card she'd make the same comment.

"You really have quite a collection of cards here."

So yes, I suppose making post cards for my mother has been a worthwhile project and though she isn't bouncing with joy about them, they are something to peruse and wonder about.

Grandma enjoyed watching the embroidery progress and wanted to look at it closely every time I cut the thread.  I finished the embroidery in one day and made it into a card yesterday.... ...And decided to just write a message on the back and hand it to her rather than send it in the mail.

Another card to add to her collection.

Day 13 - Peacocks!

Takumi arrived Sunday afternoon and he and I took off for the Arcadia Arboretum which is about 30 minutes from my brother's house.  Such a lovely place and as I am usually in California in July and August, I get to see a different abundance of flora this season than I usually do.

The funnest part of the Arboretum are the peacocks!  I wonder how many peacocks they have there.  They were walking around the parking lot, perched on building roofs, sleeping amongst the rocks and bushes. 

Takumi and I would be walking along and spot a slight movement by the path. 

"A peacock!  Ooh good!  Let me take a picture."

I'd turn my camera towards the peacock and either Takumi or I would notice that there was another one.  And another one!  And another one!  Six peacocks at our feet and we didn't even notice them!  And peacocks are pretty big and the males at least are pretty colorful!

We had such a great time peacock hunting... sort of a take-off on Easter egg hunting.  Here a peacock, there a peacock, everywhere a peacock!

Of course when the males start dancing they are a little hard to miss.  BEAUTIFUL!

A lot of trees too...  

Nothing like taking advantage of a tree nook.

... or two.

 And another peacock. 
 

Day 12 - Grandma care

I think this is going to be a mucky, yucky Grandma update.  I hope you don't get grossed out.

Hospice services sent a very nice "liaison" on Thursday with all the paper work that needed to be signed.  The nice man "evaluated" Grandma and told us a little about the organization, a not-for-profit organization.  Evaluation meant just a handshake and asking how she felt, and then verifying that she really needed a hospital bed and diapers.

(Simba approved the hospital bed before Grandma got bedded down.)

Thursday afternoon (fast service!) the medical equipment was delivered.  A hospital bed that has buttons that makes it go up and down, raises the head and feet.  An amazing air mattress that has cells that alternately puff up to prevent bed sores.  An oxygen machine (though Grandma as yet doesn't  need oxygen) and a back up machine in case of a power failure and for use when mobile.  A porta potty that we won't be able to use.  An adjustable bedside table.  That's a lot of equipment in Grandma's small bedroom.

Friday morning a young male nurse arrived at our door, another "evaluation" taken, this time physical.  Simple questions for Grandma like did she know the date, her age etc.  He took her vitals with fancy gadgets that I'd never seen before... (oxygen levels taken by finger, temperature taken from her temple, weight approximated by her bicep measurement).  I got an official lesson on the proper way to change a diaper without too much moving of Grandma's body.

"How can you do this all the time?  It's one thing to change a loved one's diapers but how can you just go from patient to patient without getting grossed out."

"Thank goodness for hospital gloves.  I probably wouldn't have wanted to be nurse without the hospital gloves."

A wonderfully pleasant young man and he contacted the doctor immediately about other supplies we'd need.  By Friday evening we had a "comfort kit" which I think contains antibiotics and morphine... none of which are needed yet.

Saturday morning a female nurse arrived in the driveway.  That's not true.  All these nurses and deliverymen get lost in the long forking driveways of the area and end up knocking on someone else's door.  After a phone call I usually figure out whose house these care workers are at and lead them back to Grandma's house.  More of the same routine as the day before but supplies were unloaded also.  Diapers, waterproof diaper changing sheets, gloves, creams.  It is amazing to me that all these things are supplied for free once Hospice kicks in.

"Call us anytime, 24 hours a day and a nurse will come out immediately (assuming that they can find the house).  Any questions you have, any needs you have, let us know and we will respond."

I still felt guilty when Marcy questioned the medicine prescription and she emailed the nurse back and forth and HE emailed the doctor back and forth and finally forwarded the doctor's exact message with reasoning on why some medications were being discontinued.  Poor doctor.  Poor nurse.  They have enough to do without answering our rather unimportant questions...  but this may be my Japanese way of thinking... not really questioning the care and the ever powerful doctor.

Sunday, (EASTER Sunday remember!) another male nurse arrived doing the same routine (a couple questions, vitals taken).  He talked to us about getting Grandma catheterized as she just sits in a pool of urine and feces no matter how often we change her.  Zero control.  And eye drops, pads for bed sores and nausea medicine all were delivered last night.

(Takumi explaining the workings of the hospital bed.)

So.  Everything is good.  Considering.  Grandma gets excellent care.  She gets a lot more visitors and doesn't seem to mind the new equipment.  I had worried that she might balk at the hospital bed because the rails essentially keep her trapped in bed... which was part of the purpose because she was getting up and making her way to the kitchen in the middle of the night last week.  I'd wake up (I'm sleeping on the sofa) and she'd be hanging onto the walls trying to get somewhere.  She cannot work the bed mechanism herself no matter how often we've explained but that isn't a surprise.

I am good too.  I have surprised myself by being able to do the dreaded diaper changing job with ease.  How often in our young days have we thought,

"I will NEVER be able to do that.  I will NEVER want anyone to have to change my diapers someday.  That would be the ultimate embarrassment and removal of dignity."

Although Grandma converses (when she is awake) and eats well and has opinions about what she wants to eat, she has absolutely no qualms whatsoever about having diapers changed.  How can that be? I ask myself.  How can a person NOT be embarrassed by the process of having their behind wiped and creamed and people peering down there to assess the area?  Grandma couldn't care less.  She doesn't mind me, nor Marcy nor any of these people, male or female, that visit her even when she doesn't really recognize that they are nurses.  She's not unconscious nor delirious nor knocked out by drugs or pain.  She just assumes that bathroom habits take place in bed... maybe she thinks that that's where they've ALWAYS taken place.  So strange.

Still on the docket this week are visits from certified nurses assistants who will do Grandma's hygiene care...  Bathing, shampooing, nail cutting.  There will also be a chaplain coming by from the Hospice (of course if requested) and a social worker will come unannounced every other week or so... to make sure Grandma's not being neglected and that Hospice is doing their job I guess.  It is all very organized but very caring also.  So far so good!

Marcy and I still have conversations about how long this is going to last.  Whether we'll have to make a decision to take Grandma out of her home.  I sure hope we don't.  I hope that with Hospice we will be able to do all this care ourselves... and I hope Marcy won't get stuck with long time nursing after I am gone.

Taking it all day by day and so far staying cheerful and discovering a world I never knew existed.

Day 11 - Easter Sunday!

Hallelujah!  Praise the Lord!  It is Easter Sunday and though a bit overcast, another day to be happy to be alive!

I got up and changed Grandma at 5:00 AM so that I could go over to a community Easter sunrise service at Forest Lawn Memorial park which happens to be right over the hill from my brother's house.  It felt strange to be out driving on the freeway (yes, over the hill but still I take the freeway) when it was dark out but I followed the line of cars to the cemetery and took a seat on one of the dew covered folding chairs set up in front of the mausoleum.

At a little before 6:00 AM it was still dark and the moon was up above the mausoleum.

I haven't been to a sunrise service since I was in college (I guess the only sunrise church services in Japan would be at New Years...  I'm not even sure about that) and it was nice to be part of a crowd worshiping together.

At the end of the service two or three baskets of white doves were let loose above the worshipers and that was a nice touch.

I thought this was an interesting picture I caught of a couple of doves (there are two.  Look closely) flying above the mosaic of Jesus being baptized by John the Baptist and the Spirit descending as a dove.

Leaving the cemetery.  As you can see not much of a sun filled morning.

An hour after starting, God's light is shining (not particularly brightly but shining.)

Day 10 - Tatting and sewing

Hospice is moving quickly these days!  We have a hospital bed, we've seen an evaluator and a nurse, we have oxygen (not needed yet), and a comfort kit (not sure why we need that...  morphine etc), an air mattress and an adjustable table.  When Hospice moves they really move quickly!

In the meantime...

I am sewing, and I'm tatting.  First the tatting.

I finished the one necklace before I left Japan but I needed to get the chain and fastener parts at Hobby Lobby.  I worked on the second necklace on the airplane and then when I got to Grandma's house (and keeping an eye on other things got me all confused.)  I finally finished that one too and put the chains on both necklaces.

I have a friend in Japan whose daughter first made this necklace pattern and my friend wore it over a turtle neck sweater and she looked so nice.  I can't really tell if this is a style though that Leiya or Kiana is going to wear...  It may be a bit too Victorian for them (especially for Kiana in tank top California styles...)  I think I'll put my tatting shuttle aside until I find an output for my tatting skills.

I did cut up the green fabric that I bought at M and L's.  (And a blogging friend sent me MORE green fabric so I'm going to be able to make a couple of the Scrappy Majestic Mountain quilts!)  I have my sewing set up in Grandma's living room with the ironing board, the sewing machine and the smallish cutting board.  Occasionally we move Grandma out of her bedroom and onto the living room sofa so that she can watch the quilt construction.

Next step, slicing up those dual triangle blocks. 

How many more do I have to go?

Day 10 - Prom night!

Thanks to Colin yesterday, we all enjoyed some fun and laughter.  Last night was Colin's high school senior prom!  The prom was being held on a yacht at New Port Beach.  Ooh!  Fancy!  I've never been at a party on a yacht!

Marcy of course has been running herself ragged the past week for this prom event.  Order the tuxedo, order flowers. Check with Colin's girlfriend about colors.  Go for a fitting... etc. etc.  I missed out on all this with my children as Japanese high schools do not have proms (maybe I should say Takumi missed out on all this) and Leiya was going to high school in Ohio so I wasn't around to get into the gaiety of prom preparations.  Leiya did get to go though (no boyfriend at the time.  In my day if you didn't have a boyfriend you didn't go to the prom.) and I remember she sent me photo after photo of her trying on her friend's elder sister's prom dresses...

Yesterday after lunch Colin started to spruce himself up and he came in to Grandma's looking pretty handsome! 

"Colin enjoys all the fancy dress-up events."  said my brother shaking his head...  My brother is about the least dressy person I know preferring hiking boots, flannel shirts and sunglasses on a string.

Grandma was overjoyed to see another good looking grandson and Colin joined her on the sofa for a photo shoot.  Two grandma photos with two different grandsons in one week.  Pretty nice for Grandma!

Marcy's pretty proud too!

We rushed Colin over to his girlfriend's and then made a quick detour to a park to take a few photos.  Marcy has a big black Canon camera but she didn't even take it out of the closet and asked me to take pictures with my mirrorless Olympus Penlite.  I tried a few settings...  Airy-fairy soft brushed for a romantic look,

Vignette for a posed look.  Colin and Alexis were happy to smooch for the camera too and that would be a big no-no in Japan!  Kissing in front of people at age 18?  Kissing in front of people period!  I can't even get a good-bye kiss from Tetsu when I board an airplane!

Ah... to be 18 and spending an evening on a romantic yacht with your best beau!

Day 9 - Some action!

Yeah!  Someone is coming from Hospice this morning to evaluate Grandma!  Finally!

Now if this evaluator had come YESTERDAY, he might have had Grandma whisked out of our care immediately and told us she wasn't long for the world.  Grandma collapsed during a shower yesterday morning... yes, I had gotten her into the shower with me after she had taken offense that I'd assumed she wouldn't want one.  Marcy and I bedded her down again but by afternoon she was vomiting and miserable.  Marcy and I set ourselves a limit for the bucket usage before we were going to take her to the emergency room but by evening Grandma was just sleeping again.  Well, if nothing else, this evaluator is going to see Grandma at her worse and the services will roll in.

This morning I come back from a walk and Grandma is nearly in the kitchen, no walker.

"Where's your walker, Grandma?"

"I couldn't find it."

Yes... well besides the fact that she had to push it aside to get out of bed...

"Are you hungry?"

"Yes!  What have you got?"

Perky.  Good... I guess...

Marcy saw that Grandma was up and joined us for a morning chat.  After breakfast we put Grandma back to bed and Marcy and I sized up the situation.

"This evaluator is going to think we were lying and just want free services.  Grandma is really with it this morning and she looks alert.  With someone new she may even be chatty."

"They know.  They know that there are good days and bad days but that the bad days are becoming more frequent."

"I'm glad you didn't put her on the sofa though.  We don't want this guy to think she can hold her own TOO well."

Marcy and I are thinking alike again.

Only a few more days until we get a hospital bed in here!  Now where to retire her OLD bed...

Day 8 - Patience, patience

I thought I was a patient person.  I'm pretty even tempered... a bit of a stickler to rules and details.  I'm not too opinionated (except when I'm with Tetsu.  He'd probably tell you I'm not any of the above.)  Unfortunately for my sister-in-law, I blew a fuse yesterday.

So... Everyone is giving me advice about using Hospice. 

"You don't have to reinvent the wheel."  That was good advice.  There are ways and services that I don't know about.

"You can't do it all alone."  That is true.  Whether today or tomorrow or whenever, we are going to need help..

"It's the best thing for your mother and it will be for Marcy too after you go back to Japan."  Okay.  We want to do what's best.

"If you don't provide the basic safety and health care you might get called on negligence."  Whoa... that was a shocker (given by a neighbor doing her own elder care.)

So Marcy and I agreed and she called Grandma's primary physician last Thursday.  And like the good daughter, sister-in-law, sister, I patiently waited expecting some action.  No action.

I nagged Marcy.

"Maybe we should just call the hospice services ourselves."

"No.  The primary doctor has to set the wheels in motion with a prescription... and then there is an evaluation.  It takes time."

I don't know.  I honestly don't know how the system works and have always taken a back seat to decision making.  I just pop in once a year...  My brother's family has to live with the problems year round.  And with the solutions that are chosen.  I was patient.

Friday, Saturday, Sunday.  I really didn't expect much action over the weekend.  Monday.  Nothing.  Well, Monday is a busy day for everyone getting caught up from the weekend.  Tuesday... morning, Tuesday afternoon...  That's when I blew it.

"Hi Tani, how you doing?"  Oh... the innocent question from Marcy.

"I'm sort of in a bad mood." 

My voice got louder. 

"And actually I'm really angry with Dr. So-and-so and I'm angry at Keion and at you!  Nothing is getting done!  We keep talking about the need for Hospice and no one but me seems to care that we aren't in touch with them yet!  Just give me the doctor's number.  I'll call him myself! Grandma could be dead by the time he calls back!"

Marcy shushed me as Grandma was asleep on the sofa in the next room.

"Okay...  I understand your frustration.  It's too late now.  I'll call again tomorrow."

"I'm sorry to get angry, Marcy.  I just thought that the reason I was here was to sort things out and make some decisions and nothing is progressing at all."

Marcy took the brunt of my frustration and went back to the main house and then returned to tell me she'd gotten in touch with a nurse and a promise to have a doctor call in the morning.  I'm pretty sure my brother got the report that I was burning a fuse because he came over and sat on the step not saying anything but telling me with his presence that he wasn't completely insensitive.

I regret my burst of temper and apologized.  Marcy accepted the apology saying she was used to it (daily from her kids... that made me feel worse just placing more burden on her.)  Grandma is unaware of the emotions going through her bedroom.

Sigh...   "Patience and gentle talk can... overcome any problem."  Proverbs 25:15

This morning's Bible verse came a bit too late for me.
 

Day 7 - Critters

Usually I am off on a morning walk around 6:45 and I either go off toward the local high school (this year still in session while I'm here) or I take a hilly route through a residential area.  Some years I meet skunks and possums, some years coyotes and peacocks.  This year there seem to be a lot of squirrels about.  Big, fat, fluffy tailed squirrels who tight-walk the telephone lines and jump from tree to tree.

I remember seeing a funny video about the amateur camera man who imagines himself out in the wild coming face to face with stampeding gazelles and peaking out of the brush in camouflage wear at lions who yawn in his face.

The camera man shoots photo after photo with high powered canon-sized looking lenses treking through mud and facing miles of Arctic ice capturing land and sea creatures alike in his magnificent National Geographic quality photos.

The cameraman is draped in numerous cameras and tripods and occasionally drops to all fours to shoot another prize winning image of life in the wild.

An artist out to preserve beauty through a camera, a journalist out to record the wonders of the world!

And then he opens his eyes to the reality of his park bench, his small handheld camera and a bunch of pigeons who won't stay still for a shot... though a stray cat does pose politely.

Ah the dreams of what we with cameras think we are doing.  I identified entirely with that video!  I may not have pigeons but I have the neighborhood squirrels...

And a cat.