Night Must Fall

Mom is doing much better, but she does have certain fixed notions, which make caregiving a little more complicated.  For example, she hates the Hydraulic lift and will not use it.  Her physical therapist tried to coax her into it Thursday afternoon, and Mom turned to me and said 'you try it first" ( I said they had used one on me the first time I was in the hospital with diabetic ketoacidosis.)  So, I sat down, and Man Chan (the PT) put the seat under my butt, clipped it to the chains on each side, raised me from the wheelchair, and moved the lift to a regular chair, where he sat me down.  I felt like a cross between the Girl on the Red Velvet Swing and fat Henry VIII being lifted onto his horse.

Despite all this, Mom still will not use the lift.  And now she has turned against the hospital bed, even after I moved heaven and earth to get the bed transferred from the bedroom to the dining room.  I want to get her into the proper bed tonight, because sitting in that wretched chair, and sleeping in it  (it's a thickly upholstered Recliner chair) is not good for her backside, or her lungs.  Mom must be the most stubborn woman in the world.

To be honest, Mom reminds me of our Beagle, Penny.  Penny gets spooked by mechanical objects ( hospital beds/hydraulic lifts) and refuses to have anything to do with them--just like her Grandma.  Penny, when scared, cannot be reasoned with, and neither can Mom.  Both of them are fascinated with their excretory functions, which I can understand in a Beagle, but not in a woman who has her Masters' from Teachers College.

What topped yesterday for me was the movie 'Night Must Fall" on TCM.  Mom really has mastered the Dame May Whitty role, of the autocratic old Lady in her wheelchair.  Alas, May had  a very stylish old wheelchair with no arms and a rattan seat--kind of like FDR's.  Mom has a chrome and vinyl job--too modern and it does not suit her Aristocratic persona.

Trick and Treat

Mpm is doing well, with several relapses along the way.  As much as I would like to see her make steady improvement each day, I must accept that it will be a slow process.  The curve has a few downward turns, but she is making progress.

Her doctor changed her medication, eliminating Wellbutrin and Gabapentin (Neurontin).  They seemed to be making her confused and more depressed than normal.  I could tell Mom was in one of her 'Eugene O'Neill moods, by her pose.  She will sit in her wheelchair, or loungechair (upholstered) hand on chin, looking like Rodin's 'Thinker".  All that time, she stares at either the floor or her feet.  That's when I know 'this is going to be a tough day.

Anyhow, the change in prescriptions has done a world of good.  I don't see too many O'Neill moods, and she is doing her exercises.  I am learning to be more patient, and give myself a time out when Mom gets 'oh I will never get out of this chair' ish.  Yes, I know it's tough on her, but Mom has always had a flare for the dramatic, and tends to dramatize these scenes.

The Half of it Dearie Blues

This  morning  I thought life was going fairly well,.  a different health aide came and we got mom out of the upholsterted chair.  That's been the extent of our progress.  Now, Mom refuses to move from the wheelchair to the other chair so I can change her soiled diaper.  We are going to wait for the men to move the hospital bed, then change her when she gets on the bed.

I guess it is what you'd call either a 'forlorn hope' or the "Hail Mary pass".  Given Mom's current mood, I don't know if she's going to move from the wheelchair to the bed.  As a matter of fact, she seems to be determined to remain motionless--not to move at all.  It's the ultimate in passive aggressiveness:  she retains power by claiming she can't get out of her wheelchair.

First, she said her knees don't lock, or her ankles don't work.  Her legs do move quite nicely when she uses them to scoot her wheelchair from one room to another.  As the visiting nurse observed:  "if you can move your legs, they can support your weight".  But, like the old protest song, she shall not be moved. 

Something's Gotta Give

Yes, Mom has become the Immovable Object.  It was so bad today that her physical therapist left after one failed attempt at getting her from the chair:  I was holding and lifting on the other side of Mom's body.  She just got so terrified at the thought of standing on her legs.  What makes this so irrational is that she could do it in the nursing home:  I even saw her walking and standing during physical rehab. 

Oh, all sorts of thoughts go through my mind.  Some of them are compassionate--she's never been in rehab for this long ( almost three months);  the space is different at home, and there are no experienced health aides to get her moving.  It might even be some residual dementia--making her hold on to her fear.

Having said all that, I do have homicidal thoughts about my dear old Mother.  She spent a good portion of her life being negative and anxious, and has transmitted this anxiety to all four of her daughters.  One reason I had such a poor body image was the memory of the first time she bathed me at home--ran out of the bathroom crying when she saw the chest scar.  Mom has been such a negative person--and prone to depression.  Having ancestors from the west of Ireland adds a nice dose of depression to her DNA--one of her childhood memories is looking at her Dad and saying "Look Mommy: Daddy's smiling".  ( an unusual event in the Regan family.

So, enough.  I am going to use the techniques that got her out of the wheelchair this weekend, and will plant her in the bed tonight.  Tomorrow, the men from the medical equipment company are coming to move the hospital bed from the back of the house to the dining room.  Perhaps, if we tip them extra, they can carry the regular bed to the bedroom.

If anybody is reading this, say a prayer for Mom and her caregivers/daughters:  Ginny and me.

We Shall Pass This Way But Once

Mom came home last Wed. and I have been far too busy to update the blog.  Things went fairly well until this morning, when Mom altered our usual routine.  Instead of waiting for me to change and clean her when she was in the bed, she got into the wheelchair by herself and all movement ended.  It took all morning, until about 1230pm before we got HM out of the wheelchair and back into the reclining chair, so she could be washed, changed and dressed.  That also includes a wet/dry dressing change, too.  Someday, I might make a very good nursing aide.

And the nonsense from the home health care provider was beyond belief.  The RN, who came Thursday, did not ask for a home health aide, because he was 'only covering team 35'.  The Physical Therapist tried to get a health aide assignment, was unable to do so.  When I phoned this morning, I was told that the 'case is not yet in our files' and I, as well as the supervisor, would have to phone the first RN.  I asked 'isn't a phone call from you sufficient"?  implying that it was her job, not mine, only to be told 'that's the way we do it".  

So, Mom, who can move her legs, and put weight on them, who used a walker at the Rehab center, refused to do so at home.  She said she was afraid/confused/knew she could not do it.  It's rather maddening, because I saw her walking at the rehab center, and I know her legs can bear weight.  If you ask me, and the nurse, who was an Angel, agreed, it is more mental than physical.  God help me and God help her.

Mom said I deserve a treat, so I'm going to find some nice costume jewelry on sale.

Grace and Favor

For some reason, Mom takes out her rehab frustrations on me.  Ginny, Cathy and Mary Pat get a pass, although in MP's case, she lives and works in Dutchess County, NY, so it's probably a case of absence makes the Elizabethan Heart grow fonder.  Anyhow, my dear Mother was quite a brat yesterday, but let me set the scene.

Mom had a new aide in the morning.  She and the aide had a bit of a tiff over getting Mom dressed.  In this case, I can sympathize with the aide, because Mom can be quite maddening to dress.  I have, many times, picked out a perfectly good outfit, only to be told "I'm not wearing that".  Either the colors are wrong, or there is a small spot.  My instince tells me Mom was her usual unhelpful self.

So, when I arrive after lunch , Mom is tired from three hours of rehab, and still sulking about the aide.  The first thing she whispers to me is "would you please change my diaper?  It's clean, but it's not clean".  So, I told her 'No.  I could do this at home, but not at the rehab center.  Do you want me to take you to the main room?'  Mom said , whispering again because her new roomate is a Minister, 'you are such a little bitch".  Then, HM takes the footrests on her wheelchair, raising them to a 180 degree angle, so I can't get her wheelchair past her roomate's walker, and wheelchair.

Knowing I was licked, I went and got the head nurse, who said that since Mom's diaper was soiled ( she confessed to him) she had to be changed in the room.  So, the aide came, changed and cleaned Her Majesty, then I took her out to the garden where her mood improved by watching the sparrows eat her unsalted saltines.

Mary, Mary Quite Contrary

Only 7 blog posts in October:  I can do better than that.  So, this is going to be short and to the point.  Mom is doing much better, mentally and physically.  She is far more lucid than when she was admitted,  which is both a good thing and a bad thing.  The good thing is that she no longer sees mice flying around on mauve carpet, or dollar bills ( 5 dollar bills) hanging from the ceiling tiles.  The bad thing is HM Queen Elizabeth is bored to tears by her occupational therapy, and tries to hide in her room to escape it.  When the transport aides find her in the room and take her to OT, she accuses them of spying on her.

Being a bit foolish, I tried explaining that the aides were not spying, just doing her job, only to get the Look from Mom.  The look is an expression that combines the divine right of kings with Irish Catholic guilt.  I call the mood that goes with the look 'Queen Lear is in da house".  Mom is full Queen Elizabeth Tudor mode, and reasoning with her is a total waste of time.

Finally, Mom has solved the problem of remembering the names of patients and aides by calling all the women "Mary".  This gets very confusing at times.  Yesterday, she told me "Little Mary got sick and went to the hospital' but when I went out in the hallway to take a cellphone call, I saw "Little Mary' wheeling herself to her room.  When I got back to the room, I said to Mom " I just saw Mary, Cathy's neighbor, in the hall.  I thought you said she was in the hospital" and Mom replied " Not that Mary: the one with the German accent".  ( whose first name is Margaret, but I'm not going there)

God Sent Us Our Elizabeth

Yes, Mom is 1/4 English:  her maternal Grandmother, Mary Elizabeth Riley, was born in Kent, and emigrated to New York when she was a child.  There are a few telltale signs that Mom is of English descent.  She loves overcooked vegetables; prefers to drink tea; and adores red meat, preferably roast beef.  It's not the greatest diet in the world for somebody who has congestive heart failure, and she won't like the chicken, fish, and pork diet, with lots of veggies and fresh fruit, but that's the way it goes.

Yesterday, I tripped in the upstairs hall and smacked my head against the corner of the wall.  You might call it a Fashion Crisis, because I tripped over a leopard print headband that I had just dropped on the floor.  Even though Ginny thought I was overreacting, I went to the ER, because with the chronic HepC, my platelet count can drop, so I decided to be prudent.  Anyhow, the CATscan was normal, but the family reaction was not.

According to Cathy, who I phoned from the ER, Mom was very miffed that I failed to visit yesterday.  She did not care that the doctor had given me codine--Tylenol 3, and I hadn't been so stoned in years.  Mom then told Cathy " I suppose I have to go across the street and visit her".  I just laughed.  Mom is living in a Bettyocentric universe, where she is the Sun, and her Daughters are planets who orbit around her, because if they don't, they will wobble off into space and be hit by an asteroid.

So, I'm going to put on makeup, walk Penny, then head down to Augustana to visit my Ever Loving Mammy

Like a Lark Who is Learning to Pray

Mom wanted to be a big band singer, like Martha Tilton or Peggy Lee.  She told us when we were young that she asked her Father for permission to become a singer, but he said 'No.  Only 'loose women' go into show business.  ( Since John ( our Grandfather) worked for Howard Cullman who backed many Broadway musicals in Broadway's Golden Age, I wonder what he knew about 'loose women'?).  Anyhow, Mom went to Teachers' College, Columbia Univ. after graduating from College of New Rochelle, but sang whenever she could.

On long car trips, Mom would sing because 'I can't stand the silence'.  So, I learned the lyrics to such songs as 'Cigareets, and Whusky and Wild Wild Women"; "  The Wild Goose Song"; " Climb Ev'ry Mountain; The New Ashmolean; and most of the Johnny Mercer song catalog; 'Artificial Flowers' ( I wonder if my life would have been different if she'd sung 'Mack The Knife"?  Perhaps I might have been less shy/ more daring?  Probably not.

She still sings, and it is just as crazy making.  In the hospital this Summer, one day, Mom sang all the verses to 'I'll Take Manhattan" just because my Brother in Law, who was visiting, mentioned he'd just come from Manhattan.  Mom sang at a forte level, to the point where her roomate and visitors were peeking around the curtain to see what on earth was happening.  Why did it make me crazy?  Because she was using singing as an attention getting device:  either Ginny or I would be watching TV, reading a magazine or book, and Mom burst into song to distract us.  That's why I never brought into her excuse " I sing because I'm happy.  Don't you want me to be happy?"  Yes, I wanted her to be happy and quiet, if such a thing were possible. 

There were times/I'm sure you knew...come to think of it, "My Way" was the only Sinatra song she ever sang on car trips, and that's my whole point.  I wanted to sing, but could not, because Mom had center stage, and it never occurred to her to share the spotlight.  So many times, I've had a song, tune, motet, etc, playing in my head, only to have it drownded out by her singing or humming.

At this point in her life, I am going to remain silent, and let her sing when she comes home.  I don't think it would be kind or fair to confront her with old grudges.  I'll join a choir in the new year, and find my own voice.

Good Day Sunshine

It was a pretty good day, except that Mom was a bit out of sorts when I arrived at the nursing home.  I think she was miffed because I was 'late' even though I had explained to her that there is a good deal of housework to do, and I can't spend all my time visiting her.  And her Pys. therapist was back from vacation, and gave Mom quite a workout, and it's tough on an 83 year old body.

Not that I enjoy it when she's crabby.  My Sister, Cathy, is right:  Mom and I are like an old married couple; we can bicker over the slightest detail, which would seem unimportant to an outsider.  These days, the quarrles are more along the lines of execretory functions--either asking if Mom has to go to the bathroom or needs to be changed because she's gone.  If the former, I have to take her to the main room, where an Aide will help her to the bathroom, and if the latter, I have to get a clean adult diaper, a clean pair of pants, and then take her to the main room, etc.

After Cathy made that observation, I have watched how the nurses and aides handle Mom when she gets in her Gloriana mood.  Sometimes, it's wisest just to take action:  explain what you are doing ( I'm taking you to the main room_ and do it.  She is not going to be swayed by my puny intellect , or bow to the force of my reasoning.  No, they don't call them 'The Greatest Generation" for nothing.

A few years ago, when I was researching the family tree, I came across some information about Mom's ancestral village.  Mom was born Elizabeth Regan, and her Grandfather, John C. Regan/O'Reagan, came from the town of Roscommon in Ireland.  In the late 18th Century, Roscommon had a Lady Hangman, known as " The Lady Betty".  I wonder if she was a Regan/O'Reagan--the BBC interview did not give Lady Betty's surname.

And there may be a link to a gangster on my Maternal Grandmother's branch of the family tree.  Mom's maternal Grandmother was Mary Elizabeth Diamond, who married Andrew Riley.  My Grandma was the oldest child, and only daughter--she had four younger brothers,  actually 5, because she never told the family about her brother Charles Walter Riley.  I found him on ancestry.com, through the 1920 census.  Mom never knew he existed.

But to get back on point, one branch of the family, descendants of Harry Riley, the youngest brother, said Legs Diamond, a bootlegger/mobster of the 1920's, was a cousin of Grandma Riley's.  I just love the idea that my Mom and Grandma, two Irish American Ladies, were related to a Jimmy Cagney type character. 

Perhaps My Lady Betty gets her stubborness from The Diamonds.

It's a Brand New Day

Yesterday was fantastic.  I got a very badly needed  break, thanks to my Sister, Cathy.  I was very frustrated after Mom's conduct Friday, and overreacted because I was tired.  God is trying to teach me patience and compassion, but I am not the brightest student in the class.  This might sound disrespectful, but Mom is like a poorly behaved pet:  she acts out because I create the energy that permits her to do it.  Clearly, our relationship must evolve from co-dependency to a mutual understanding.  Not easy to do when one party is a frustrated 83 year old woman who is sick of being in rehab and wants to go home.

Better talk with the social worker tomorrow, and find out how they handle difficult patients.  Mom is not the first person to rebel against their rules and regulations.  There must be a way to create a healthy environment for both patient and caregiver.  I just have to keep an open mind, which is easy to do because my mind is often blank. 

What I find frustrating is when Mom's tired, she gets very self centered and never stops to think that my health isn't perfect, and the stress she creates does not help.  At those moments, I wonder who she is:  was she always like this and I never saw it, or can this be a product of illness, age and frustration?  Will the real Betty Michaels please stand up?

Today, we are bringing Penny down to see Mom.  This should give Mom a needed shot in the arm.  If both Mom and Penny behave themselves, it will be a very good day.  Personally, I believe they will both be on their best conduct.  Just hope we can obey all the rules and regulations.

When I'm Feeling Sad...

Yesterday was not a great deal of fun, because Mom went on the warpath.  It was not her fault:  the transportation aide took her to the wrong therapy department and Mom sat and fumed for over half an hour before a therapist said 'what are you doing here?  you've already had physical therapy."  Mother, being a Lady of the old school, took her tone as rude, so refused to do any further therapy, even after the therapist saw me in the hall and asked me to come and talk to her. 

They should not put so much faith in me:  when Mom gets angry, Jesus Christ and his Mother could not coax her into doing exercises.  She is the most stubborn person in the world, and she gets it from her Mother, my Maternal Grandma, who was half English and half Irish, but so stubborn she would not admit to being Irish ( "I'm really more English than Irish, because my Mother was English and women inherit everything from their Mothers".  Well, Britons ne'er shall be slaves.

Mom announced that she was never going to therapy again; she was going home.  I spent the better part of the morning fretting about that, only to be told by Cathy that Mom went to PT without any fuss. It's very weird when Mom gets her passive aggressive act going.  Her only power lies in not doing what therapists , aides and daughters want her to do.  It's rather like Ghandi, or a Sixties sit in ( without the marijuana; just a tank of oxygen.

Moral of the story is I spend far too much time worrying about her.  Speaking of worry, I just heard our resident squirrel over my head.  I've seen him/her on the second story window sill in the late afternoon then heard those little footsteps on the plaster, not the metal of the gutter.  Ginny insists he is in the gutters, but I do think I hear those dancing little feet.

Status Quo

How are things after close to two months of uproar?  As Ginny said this morning: " I wonder which Betty we will see today".  Mom's mood is like the New England weather: if you don't like it, wait a few minutes and it will change.  Yesterday, Mom began in a very stubborn mood: she did not want to go to the activity; she did not have to go to the bathroom; she was not having her haircut; she did not care if I brought her a hard boiled egg the next day, because ' one egg is the same as the other".  There's a Zen koan in there, perhaps 'what is the sound of one egg boiling?".

So, I tried to listen to her, not correct her, and even explain things when she mentioned 'you tend to tune me out at times and change the subject".  I said that I did tune her out if she began talking about something off topic, and I should be more careful in future converstations.  It's very hard to state the flat out truth, which is I changed the subject when she was going on about suing babies, acquaintences who visit houses of ill repute, mice who take Mom for a ride to Amagansett on a flying mauve carpet.  Oh, well.

After therapy the other day, I realized that some of my relationship with Mom is co-dependent, but it is part of the caregiver/patient dynamic.  But, I must take time to care for myself, give myself a live outside of nursing home visits.  That's why I am keeping doctors' appointments, writing this blog, and looking to do something on the weekend--gardening, birdwatching, shopping.  Yes, the caregiver wants to have it all. 

Cogito; Ergo; Sum

This photograph of Penny perfectly expresses my view of the world:  the furniture is tilted, and I am going to hide while the graham cracker in my mouth becomes soggy.  Life does seem somewhat chaotic while Mom is undergoing extended physical therapy at the Rehabilitation Center.  My daily routine is do get up, put in my teeth, do a fingerstick, take a shot of Lantus, decide on breakfast, and calculate the correct dose of Humalog.  Then, I get dressed and walk the dog( Penny, the Love of My Life).  Finally, I do housework before leaving for the Rehab Center.

Not especially thrilling, is it?  But this is the reality, and I try to manage as best I can.  In all fairness, I'm beginning to enjoy housework:  the sense of making some order out of a chaotic universe.  Housework is predictable; my beloved Mother is not.  One day, Mom can be fine mentally, but the next day she is asking Ginny to phone the lawyer because she wants to sue a baby.  Ginny told her that it would cost too much money, so she dropped that idea. 

Actually, the real problem is Mom wants to come home, but I do not think she is physically ready yet.  She can only stand with the help of two people, and then for a short period of time.  Part of it is her weight, and the other is the severe osteoarthritis in her knees.  Then, some of it is psychological:  Mom's so afraid of falling that she will sit down rather than attempt to remain standing.  I must phone her doctor today, and request that the antidepressant be changed to Lexapro as soon as possible.

Gotta check the email, fix the vacumn and walk Penny.