Cleaning the aquarium

We may get some snow this afternoon and tomorrow...4-6 inches.  I put my boots in the car, just in case!  When I get home from the nursing home (my second home), I will do something physical--clean the aquarium and the bathrooms or run around the block (kidding about the running!) Years ago,  I wrote a novella, "Who Will Clean the Aquarium When I'm Gone?"  Changed the title later to "Agateville."   In a nutshell, it is about a woman who leaves her husband and daughter and drives toward the sun.  You have to understand that the woman, Mona, has had enough of them both.  They take terrible advantage of her!  She goes to Agateville, finds an apartment above the hardware store and secures a job reading books on tape.  She makes many new friends.  Of course her husband comes to wine and dine her and in the end she returns home to see 100 yellow ribbons tied around the old oak trees.  I need to find some balance here.  I filled out a perspective juror form last night.  My daughter had gone to the gym and was hoping for a healthy dinner.  She had eaten already by the time I got home, so I had scrambled eggs with hot dog and toast.  I need to spend some time with my husband.  I need to WORK OUT to get rid of some of this pent up energy.  Also have an appointment at the end of March to have a mole on the top of my head analyzed, biopsied and removed.

Family Dynamics

I discovered that all it takes is a family crisis to make an entire family fall apart.  My relationship with my sister has been suffering since November.  I apologized for a misunderstanding and then a week ago, my sister reemed at me for a half hour about the things I did which displeased her.  She came up to the nursing home yesterday and wanted to know if I had talked to my brother because he is blaming my sister for my mother being in hospice.  My mother's prognosis was determined because she failed the rehab tests.  My sister and I are on good terms for the time being.  However, now my brother and sister are having difficulties.

A Timeline

Feb 11, 2013

My mother got up and ate breakfast.  Then my brother, sister, and dad decided to drive her to emergency.  I had suggested a transport, but used the word "ambulance."  My sister negated the idea. My mother attempted to get in the car head first and ended up sitting on the running board.  So they rolled her into the car, facing backwards and drove five minutes to the hospital.  The hospital aides struggled to remove her from the car.  She was admitted to the hospital because of the ulcers on her buttocks.

Feb12, 2013
An asute nurse thought to test her for -diff since my mother was complaining of stomach pain  The test came back positive.  My mother was unresponsive due to the narcotic morphine.

Feb 13, 2013
Doctos decided that she would be transferred to the nursing home tomorrow, Thurs.

Feb 14, 2013
Last night, Mother was given a beta blocker which slowed her heart rate to 29 bpm.  Cardiologist suggested a pacemaker which Dad turned down.  She would never survive surgery and it would serve no useful purpose. No move as the social workers cannot give a prognosis as to whether she is hospice or rehab.

Feb 15, 2013
Meeting with social workers.  Mother could not feed herself or move because of the drug morphine so failed the rehab test, and is given the prognosis, hospice.

Feb 16 and Feb 17, 2013
Social work office is closed for weekend.  Pending move Monday.

Feb 18, 2013
Mother is moved by ambulance to nursing facility.  Dad, brother, sister and I were there.  She was very afraid, repeated "I'm so scared!"  I sat beside her and gradually she calmed down.

Feb 19, 2013
I took a poster and some books and taped them to the wall where she could see them.  I talked to physical and occupational therapists, but since she is hospice, she is not supposed to receive these services.  However, the therapists are meeting with their supervisors, asking for two weeks of rehab therapy.

Feb 20, 2013
Her air mattress arrived today, so she was hoisted out of bed and into her chair.  We sat in the dining room/lounge for a couple hours.  First time she had been out of bed in over a week.

Feb 21, 2013
Brother came to visit.  Again she sat in wheelchair.

Feb 22, 2013
Manicurist cut and filed her fingernails.  Sister came to visit and took her for a long walk in her wheelchair.

Feb 23, 2013
It is Saturday, so no therapy today.  She ate a good lunch, but did not want dinner.  Dad and I  will try to change the prognosis to rehab.  Hope she will understand and cooperate.  Dad is going to test for c-diff too.  He is exhibiting the same symptoms.

Feb 24, 2013
When I arrived at the nursing home, my mother was sleeping.  My dad attributed her sleepiness to her "nerve pill."  She woke up enough to eat.  After dinner, she was very uncomfortable with abdominal pain.  My father discovered that because she is on hospice, she is not receiving an antibiotic for the c-diff.  We talked to an occupational therapist and she told us to terminate hospice services and talk to a social worker about receiving rehab. Need to to this tomorrow.

Feb 25, 2013
Had an illuminating discussion with the nurse.  The c-diff is under control.  My mother had her last antibiotics on Friday.  She believes that the stomach pain is caused by gas.  I believe the back pain is bone spurs or osteo arthritis.

Feb 26, 2013
I arrived early to help my mother with breakfast.  She sat in her wheelchair and I helped her eat  We went to the main lobby to watch the activity in the parking lot.  She is in pain either from her pressure sores, gas in the stomach or bone spurs.  She sat up for six hours and then was helped to bed.  She was in distress, tossing and turning and uncomfortable.  Very hard to figure out a strategy.

Clearing the Air

Yesterday an air mattress arrived for my mother's bed to relieve the pain from the ulcers.  Two CENAs used some kind of device to help her into a wheelchair.  It was her first time out of bed in over a week.  My dad and I pushed her into the dining room.   It was her initial visit so she looked around, played a game from afar.  I brushed her hair and read her a story.

If only there was a way to keep her comfortable and pain free without making her sleepy.  Baby steps.  Our goals are for her to sit in her wheelchair for a couple hours every day and to feed herself.

My dad called me and while we were talking, my sister rang through.  I returned the call and received an earful for 30 minutes.  I had been expecting some kind of call as I knew the pressure between us was building.  She is resentful that I never made it up to the hospital until Sunday...six days after my mother had been admitted.  She said that she has just gone through hospice with her mother in law, and does not want to do it again.  She told me that I had said I would take care of this situation with my mother and dad, and she wants me to take care of my dad.   She cannot handle more insurance issues and my dad's confusion with them.  She is a martial arts instructor and has to deal with misbehaving students and difficult parents.  She does not want my father to have false hope about my mother and her recovery.  Perhaps a counselor should talk with him.

My dad asked me not to become angry and I didn't.  I listened and let her vent.  I am glad that we, in actuality she, had the opportunity to talk.

I believe the prognosis is wrong but I can understand how it would have been impossible to determine the correct one.  My mother was on morphine and failed both tests for rehab...moving her legs and feeding herself.  I was honestly surprised to see her green eyes wide awake and looking at me last Monday.  As with any illness, there are good days and bad days.  The stroke induced dementia will still be present.  However, I would hope that my mother could sit in her wheelchair, converse, interact, listen to stories, and transition from chair to restroom with the aid of her walker.

Wrong Classification

After spending two days with my mother, I firmly believe that her classification should be "rehab" and not "hospice."  Yes, she is very ill with c-diff and in incredible pain from this horrible illness.  Her stomach and back hurt, she has ulcers on her buttocks, her left knee is paining her.  However, if nothing goes terribly awry, she will be better in two months.  The nurse told me today that she is "acute."  So physical therapy will be bedside for a while.  We have to put off sitting in a wheelchair or mobility exercises for a time.

I found a poster of a colorful Dalmation puppy and taped it to her closet door.  We looked at picture books and I surmise I bored her to death with photos on my tablet.  She ate well...mechanical soft (ground) chicken, potatoes, spinach and spiced apples.  She told me she was afraid that I would not come back and that she loved me.  And, Mother, I love you too.

Comforts

I can't begin to tell you how this blog comforts me.  When I am helpless and unable to do anything, I can write, I can be in control.  It is my day off and so I slept in.  I am trying to recover from the long work week.  I chose to stay home while the garage
door company refits our garage door, to the tune of six hundred forty dollars or so.   I will go visit my mother later this afternoon.  It will give the therapists, doctors, nurses and aides the opportunity to work with her to make her better.  I called the therapist to ask about appropriate clothing for my mother.  She told me to wait and see, that for now a hospital gown is okay, later she can wear the clothes she wore at home, pull on slacks and blouse.  I need to check the guidelines for room decorations.  It is a semi private room and my mother's room mate has taken over with her cards and plants.  However she is very sweet and offered to move some of them.  I will check to see if we can adhere a poster to the closet door or the wall.  One of the sites I visited, suggested making an "all about me" book.

My mother was one of 10 children. When she was 16 years old, she moved about 250 miles from her birth town to live with her sister.  My dad was her sister's friend and it was through her sister that she met my dad.  I guess they were driving somewhere and my dad told her sister, "I don't want to sit next to her!"  (He was shy!).  They were married in her hometown  65 years ago.  My mother worked as a switchboard operator at "The Bell" and at the bank and also as a desk clerk at an inn.  In her free time, she was a Girl Scout Leader for my troop, she drove my brother to baseball games and my sister to ballet.  She was at peace in the yard weeding her rose bushes and her hedge.  She spent many hours playing pinochle, bridge and euchre.  At Christmas time, she would bake 20 fruit cakes to give as gifts.  She never missed a year traveling to Florida or up north, riding in the truck which pulled the "condo on wheels" (30' travel trailer).  On Labor Day, pedestrians are allowed to walk from the northern side of the Mackinac Bridge to the south.  She would drive my dad across the bridge so that he could do the walk.  This past summer, we camped, going to the Shrine in the Woods and to dinner at Papa Lou's in Petoskey.   She would hop in her wheelchair and we would tool around the park and she would read the names on the trailers and 5th wheels, "Winnebago, Palomino, Starcraft, Cobra, Tioga."  She would build a roaring campfire and tell us, "I used ONE match!"  My mother could hold long conversations.  I'd be chatting with my mother for so long that my husband's mother would call the operator to check the line!  She and my dad are founding members of their church parish, and she is a powerful prayer warrior.  She has three children, thirteen grand children and six great grandchildren.

Perceptions

My work friend suggested that I call the nursing facility to find out if my mother had been transferred yet from the hospital.  I discovered that my father was in admissions filling out paper work and that the unit was waiting the arrival of my mother.  I got to the home in time to see the ambulance pull in.  The next few hours were confusing--trying to comfort my mother who repeated, "I'm so scared!" every minute or so.  She told me to tell her not to be scared, and so I did.  Physical therapists, nurses, hospice nurses, aides...lots of people to meet.  I had to find the call button, wipes, pantry, learn the codes to open the doors. 

This afternoon I would turn to see my mother's bright eyes looking at me.  I was perhaps 12 inches away from her.  She would comment on the people traveling up and down the hall.  We looked at pictures in a book about radio.  She knew some of the artists.  I helped her eat a a bit of dinner.
My wish for my mother is pain management so that she can regain some mobility, that she would be able to transfer from bed to wheelchair or even with the aid of a walker use the restroom.   I want her to be able to sit up and feed herself.   I would hope that she would converse with people that interest her.  So I will step back and let the people do their work.  Time will tell but I do not see a woman much different from the one that I visited two weeks ago.  She is still interested in the things around her, wants to get better.  I do not see a woman lying on a bed, waiting to die.

A Visit with my mother

It was so cold this morning as I drove to church.  Someone said the temperature was 8 degrees Farenheit!  It was cold to the bone!  After church, I visited my mother.  I was initially surprised at the quietness of her room--no beeping monitors.  When my husband is in the hospital, the monitors beep away.  I helped her eat breakfast and asked the nurse for some pain medicine for her knee.  I suspect lying in bed and the contorted position of her leg is causing her pain.  I stayed until  I had to leave to open the store.  I  kept busy with customers and clean up...50 or so vases to wash.  It's good to have something to do.  It keeps my thoughts at bay.  My dad stopped by to tell me he had visited the nursing facility.  He looks tired, so I am glad I get off early afternoon tomorrow and finally, after the long Valentine week, have two days off.   I can visit with my mother so that my dad can have some time for himself.   And then a bit of pampering for me--hair dyed and cut, brows, mustache, chin hair waxed.  The sun was out and it was a fine day for a drive.    I was careful with my comments as my sister and my hairdresser are best friends.  So at first it was amusing to see how we avoided the elephant in the room.  Finally she initiated the conversation with "I'm sorry you're mother is in the hospital."    That is not what the sorrow is about.  The sorry is that a couple that has been together 65 years is now separated, my mother is in hospice care, my dad looks like he's aged 10 years in a week.  She also went on to say how my father can't take care of my mother any more.  Interesting, because this is not the issue.  The issue is pain management which we cannot seem to manage, but then again, neither can the hospital.    My father has said several times that he doesn't want her sleeping all the time, and the morphine knocks her out.  However he did say that they were trying a pain patch on her knee.

Hospice

Good to be writing again after working 75 hours this Valentine week.  Noticed today that I was walking tipsy--probably dehydrated, so am trying to drink water.  I was talking to my daughter when I heard my other daughter crying like her heart was broken.  I thought someone died.  Turns out her boyfriend broke up with her.  So I have been reading on teen break-ups and what to do.  I talked to my dad for nearly an hour.  My mother has been categorized "hospice" and will be moved to the skilled care nursing home on Monday.  Tomorrow I will go to church and then to the hospital to help her with breakfast.

In the hospital

My mother is in the hospital and has had some tests to try to determine the cause of her pain.  Nothing has shown up in either her blood work or the scan.  She is on morphine to keep her comfortable.    I am not communicating well with my sister and a conversation with my father is difficult too.  I have had no problem with my brother because he is smart enough to refrain from putting in his two cents.  My husband is a good listener.

I will call the skilled nursing facility to check on the admission process for when my mother is discharged from the hospital.    Perhaps go to work a bit late, so I can make the calls.

A very busy week at the flower shop.  Long hours today and tomorrow.  We begin work at 8am and stay til the work is finished--could be midnight both days.  And Valentine's Day is very busy with constant last minute shoppers.  

I trained in martial arts yesterday.  I had worked 11 hours and needed  to expend some energy.  I also wanted to separate myself from the situation with my mother.    My sister called me while I was at class wanting to know where I was and to tell me to make arrangements with the nursing home.

I don't know when I can visit with my mother. Maybe steal an hour and go up to the hospital or wait until later in the week.  What point is there in going, if she is knocked out from drugs?  Her life has become a nightmare.  She is immobile, can't do anything for herself, and on morphine.  However, just two days ago, I went to the house and we laughed.  If this is her life, then I pray for release from her suffering.

Missed the boat, so to speak

I liken the flower shop to a huge cruise ship the week before Valentine's Day.  It departed port at 8am today and will dock at 7pm on Thursday.  Trouble was I wasn't aboard and am stuck on the pier.  I went to church and had this vague feeling that I was supposed to work at 9am.  But I talked myself out of that, saying only the designers had to work at 8.  So I was happily working around the house--folding clothes, unloading and loading the dishwasher--when I got a call from my son wanting to know if everything was okay.  Long story short...it was 10:30 and I was supposed to be in at 8am!  Now the store itself is only open from 11am-3pm.  So I got to work, irritated as could be  Even more  irritated that the display cooler was a disaster and my boss saying, "I told them to leave it when they asked."  Empty vases, dirty water the whole nine yards.  I priced and lugged buckets of roses and mixed bouquets from the garage to the front.  Had to reprice the rose dozens because I had priced them incorrectly.  One of our helpers was vacuuming and knocked against a round tiered glass display shelf.  The plastic supports broke and candy, candles and bears fell all over.  Repairing the shelves was a job for the owners.  One of the owners said that for a minute she thought I had found an incorrect price because I was running with a price sheet into the office.  And then one of our new people misunderstood an order and we had to hurry-scurry to correct it once the customer came in.  Only  4 more days and V-Day 2013 will be over.

Sunshine on my day off

So nice to sleep in this morning.  Once up and about, I drove to the dollar store and the flower shop.  I bought some sweetly scented pink and white roses for my mother  from my father.  Dad and I made soup--ground beef, veggies, tomato sauce, macaroni and a bunch of seasonings.  I met and chatted with my mother's aide for a while.  Rather amused because she wanted to know which large photo on the wall was me.  I am the dark haired daughter, the eldest.  At home I checked the sidewalks for ice since I had shoveled and salted before I left.  I threw a couple loads in the washer and vacuumed the carpet, and now I am relaxing.

My father said before I left.  "You know what I need.  I need help." And so we will try to figure this out.

Day off tomorrow!

High winds today, and perhaps this is the reason there was no dial tone on the store phone today.  A couple drove down from up north and a trip that normally takes two hours took  four.  They were on their way to Florida to help her mother put new shingles on her roof.  Twelve inches of snow had fallen and they had trouble seeing the expressway. Another couple drove in from Chicago to watch their daughter's swimming match.  She is a senior at the university.  Someone ordered a dozen red roses for his wife's birthday and at the end of the day, a woman and daughter bought fingerless fur lined gloves.  A father and daughter came in to buy flowers for the little girl's mother.    The president of the company drove over to check out the  phone line, but had to call the phone company.  I am off tomorrow to rest up for the holiday and nine consecutive work days.

I am reading a book about a young woman who is trying to survive the harsh Alaskan winter.  She is on a small island in the river.   She hopes to escape the island once the river freezes over.   The ice bridge is almost complete.  However she will have to face wild animals such as wolves.  She imagines that the wolves are friendly and are encouraging her in the struggle to survive.  I am almost finished with the book.  I like survival stories such as this one and Hatchet.

Beautiful Long Stem Roses 'Forever Young'

Blue Sky Haikus

Beautiful blue skies
Warm sunshine on my shoulders
Happy omen rays.

Doing what we need
Facing life's complications
Strength, hope and courage.

Ron is my support
Friend and love thirty eight years.
United by life.

Trying to transform
Ridding myself of badness
A new creation.

Blue Skies

How my heart sings, with the sunshine and the blue skies. An omen, perhaps?  We are waiting until we get back my mother's test results to make a decision for her care.  Once we know the diagnosis, we can decide if we need a skilled nursing facility or if we can manage with additional care at home.  My father told me, "We've been together for 65 years," and told my sister, "If i put her in a home, I'll be lonely."  My sister put the wagon before the horse so to speak, told me to call the agency and set up additional care.  I placed the call and the agency suggested that I check with my dad.  Good thing too, as my dad wants to wait for the diagnosis.  He also plans to find help outside the agency.

My oldest daughter's birthday is today.  I became a mom 33 years ago.  Happy happy birthday, dear daughter

Picnic, Anyone?

Let's see...the third or fourth day of snow flurries.  Guess it will be a few months before we can have a picnic

Am I on my head or heels?

The skilled nursing facility near my parents DOES have room and the admissions director is expediting the process.  My dad is taking my mother for a back x-ray and (if the requisiton is available) a chest x-ray.  She needs the latter for the nursing facility.  He will then wait to hear the results of these and the bloodwork.  I talked to him and he told me that he is not sure that he wants to admit my mother to a facility.  I reminded him that she would get good pain management, that we would visit her, bring her flowers like we do at home and that it was the doctor's recommendation that my mother live in a care facility.   Ultimately  it is his decision, and I will help him whether he decides to admit my mother into skilled nursing or we have nurses come to the house.  The doctor, my sister and brother feel that my mother's condition warrants skilled nursing care

Good news though.  I called my sister.  Of course, I couldn't help but cry.  I'm wearing my emotions on my sleeve.  I apologized and at first she wouldn't budge an inch (don't blame her), told me that I wanted to do everything (not really),  said my brother would be the one to help my father decide.  She also had a good point.  My dad sees life in increments.  He would live to see the new millenium.  He would walk across the Mackinac bridge two dozen times.  My mother would live at home until Easter 2013.  I've done all that I can do.

Can't Sleep

More than the crisis with my mother, this problem with my sister is breaking my heart.  I wrote her an apology and am sending it out today.  I did try calling (no answer) and also tried to talk to her before hapkido, but except for a couple words, she ignored me and went about her business, so I didn't have the opportunity.  Maybe I can talk to her today.

The skilled nursing home I visited last Tuesday, is $365 daily.  And since we are caught in limbo land between rehab and hospice, insurance will not cover it.  The 2nd nursing home had a bed available a couple days ago...$9000 month.  And I couldn't get ahold of the 3rd one, sounded like their fax was on, so I will call in a few hours, or drive over if I can't reach someone.  My father would prefer this last nursing home as it is close to his home.  My mother's cries of pain disturb my dad, so I hope we can find a nursing home and admit her by tomorrow.

This is a hellish circle.  Pain meds that cause kidney damage.  My mother is off her water pills because at present she is dehydrated.  The doctor told me that if she were to come off her pills, she would live 6 months.  And so it goes.  My sister knows because less than a year ago, she was in this situation with her mother-in-law.  And so perhaps she is not so much upset with me, as reliving the hell with her husband's mother.

I hope I have work friends at the end of this.  Days off today, tomorrow and Saturday before a busy time at the flower shop.  I am glad as I could see I was edgy and contrary.  I am so preoccupied that I pray several times a day that I don't do something stupid.

I met a man at church who owns a nail salon.  He became close to his God because  he prayed and God healed his back.  So he will well understand my mother's back pain.  I am going to the salon today to ask him if he will come to the house and give my mother a manicure and pedicure.  Not for cosmetic reasons but because the nails are breaking and need cutting.

I noticed on Sunday that my singing voice seemed clearer and that I wasn't coughing as much.  I shoveled the driveway on Saturday, and am surmising that the cool temperatures and exercise cleared up the gunk in my lungs.  I also was able to do jumping jacks and count out loud in hapkido class, whereas before I could  do one or the other but not both at the same time.  I will continue breathing exercises and my campaign to lose weight.  I am so glad the infection is gone.  I was worried that I had permanent lung damage.

Back to Square One

The doctor recommended a skilled nursing facility.  The nursing home that I found does not  feature that level of care.  The doctor listed four possibilities.  None however will accept insurance for care that is long term and not rehabilitative.  So we are stuck in limbo land between rehab and hospice, with the need to get her in a facility where her pain can be managed as soon as possible.  The pain is to be controlled with the same pain reliever that she has been on, a narcotic that makes her sleepy.  The doctor wrote a requisition for a back x-ray, conjecturing that because of the sudden onset of the pain, it could be cancer.  I have a call into the doctor for clarification.  It is nearly impossible to take a bedridden person to an appointment for an x-ray.

Another Nursing Home

My first impression was of a gracious old house...shelves with library books on either side, a grand piano.  I learned later that the lobby is used as a general meeting area, for entertainment and birthday celebrations.  I read the event calendar and noticed Ash Wednesday and Shabat Services.  Also paczki on Fat Tuesday.  And a carpeted staircase to the next floor.   I spoke with the marketing director for a few minutes and then she took me on a tour.  The room  is an unfurnished studio with barrier free bathroom.  My dad can ask the doctor to write a prescription for a hospital bed.  It will help because the head lifts, allowing my mother to get out of bed easier.  We can move my mother's recliner and bedside dinner table.  We could order a new chair for my father.  Take framed pictures of family and friends.  There is a small refrigerator and we can bring in a microwave.  Very much like home.  I wonder, tho, why it is so inexpensive.  Semi private rooms at other nursing homes are $9K-$10K monthly Why is this beautiful home only $6K per month?  Is there something I don't know?  The room is available whenever we can complete the paperwork and the nurse evaluates my mother.

My father complains about my mother's discomfort.  And I feel terrible that I didn't act sooner, make a doctor's appointment when the trouble first started.  It hurts to see them both going through this when it could have been addressed a while ago.  My dad wants to wait and make a decision based on the doctor appointment tomorrow.  He then has to get his finances in order.

I did reach out to my sister and leave her a voicemail about my visit, but we are still estranged.  However, I will see her tomorrow and apologize.   I have not heard from my brother.