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Archive for April, 2011

My experiences of the last few months has drastically changed my view of the elderly.  I never gave much thought to what they dealt with daily.  Honestly, I’m quite ashamed of that.  I’d see them in the grocery store or church and I’d say hello or ask if they needed help with something.  But for the most part I had no idea just how difficult life was for them.  Body parts don’t work like they use to.  Everything is a little (or a lot) achy.  Joints stiffen up, bones become brittle and minds go to far away places.  And yet, so many of our elderly – our fathers, mothers, grandparents – are left to either fend for themselves or to waste away in homes with few visits from family.  How sad that these people who gave us life, loved us, and nurtured us, are so disposable.  Please God help me to always be compassionate and loving to all, especially those who lived before me and showed me the way.

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The psychological testing on mom was to be done in three parts on three different days.  After the first day of testing mom just said it was stupid.  After the last test she sadly admitted that she had quite a bit of trouble with the math part of the test.  She followed that with, “But I’ve never been good at math.”  Before retirement mom was a bookkeeper for two schools.  Now she couldn’t write a check or pay bills much less balance their checkbook.  Dad had taken over this job, one he never had to worry about before.  We had been warned that this doctor was slow and slow he was.  It took a month for him to meet with us about the results of the testing.  It was worse than we thought.  There were 11 different tests administered.  One of the tests consisted of asking mom to name all the words that she could think of that began with the letter “S”.  She could only name three.  She was then asked to name all the things she could buy in a grocery store.  She could only think of six.  The test results showed cognitive deficits in immediate memory, both auditory and visual, cognitive flexibility, cognitive processing speed, abstract reasoning, both verbal and non-verbal, naming of familiar objects, word production, visual perceptual skills, visual memory and psychomotor speed for both upper extremities.  She demonstrated a reduction in the ability to manipulate acquired knowledge, solve problems, plan on the basis of previous experiences and to adapt to new tasks.  Wow!  My head was spinning.  I was having trouble processing this.  I think I had still been in denial about the dementia, but this left little doubt.  Mom sat through the entire meeting with the doctor looking out the window not comprehending a word.  The only thing she heard was him say she had some depression, which she vehemently denied. 

After being told the results we were anxious to have mom put back on the medicine for her hallucinations as well as medication for dementia.  This could not be achieved until mom’s doctor received the report from the psychologist.  We waited, and waited, and waited.  After a month and still no report my dad had enough.  Mentally mom was declining very quickly.  She began pulling off her ostomy, looking at it with confusion and dad was left to clean the huge mess.  Dad would find her in the shower with her clothing still on.  One day when she had been in the bathroom for a rather long time dad asked if she needed help.  She said yes.  When he went in she could not figure out how to put on her bra.  My mild-mannered father called the psychologist’s office and left a message for this doctor.  The message was:  If the report wasn’t on Dr. L’s desk by Friday, he was going to take mom to see another psychologist and then notify Medicare and their supplemental insurer that the work was never completed and they need to have their money refunded.  This was totally out of character, but he was desperate.

The report arrived on Friday.  The report had everything we spoke about and more.  There were several things that were incorrect and we are still scratching our heads wondering where the information came from.  I guess this doctor just wasn’t a good listener.  And included in his report were remarks like, “I note the family still complains of delusional thinking but has stopped the Zyprexa.”  That was the medication for hallucinations that HE had us stop prior to testing.  He also states, “I am not sure that the husband will continue to comply with recommended treatments for the patient, including medication.”  And, “…the patient’s husband called this office and was very rude and threatening to my office manager.  While the patient is welcome to follow-up in this office should she and other family members choose to do so, the patient’s husband is NOT welcomed in this office.”  Well, I guess he didn’t like my dad’s call, but it did achieve what we needed – a report on Dr. L’s desk and medication for dementia for my mother.  Another damn arrogant doctor, and no, we will not be back.

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I was happy to put 2010 behind me.  It had not been a good year, but I was hopeful that 2011 would bring much needed relief from the dark cloud that loomed over us.  In the process of dealing with things I never dreamed I would encounter, I grew closer to God.  I feel His presence beside me.  I feel His hand guiding me, teaching me – and I have a lot to learn.  I pray daily for patience.  And the more I pray for it, the more reasons He gives me to practice it.  Sometimes I laugh when talking to Him, “Okay God, I hate to pray for patience again cause, wow, do you ever given me reason to practice.  But here goes…” And again He smiles down on me and gives me one more reason to practice my patience.  I pray for strength.  I’ve always admired strong women, but never felt like one, but I’m learning.  My husband keeps assuring me that I am indeed strong.  My kids do too. I’m not convinced yet. 

 My husband continues his weekly treks to Houston to help his elderly relatives.  The trips have gotten tedious and expensive, but being the man that he is, he never complains.  Not once!   I was finally able to go with him for a couple of days and was shocked to see just how much these two people that we love so dearly were suffering.  His aunt had been transferred to a rehab hospital, but his uncle hadn’t made it there yet.  Honestly, no one really believed that he would ever make it out of the hospital. At 6’1″ the uncle was now only 121 pounds.  They both looked very weak and frail. 

Now that the surgery was behind mom it was time to deal with the dementia.  We were referred to a psychologist in October who was to do testing and an evaluation of  mom’s mental state, but he thought it best to wait until after the surgery.  We agreed.  First we had to take mom off of the medicine that controlled her hallucinations.  They returned with a vengeance.  She saw people walking up, saw things that weren’t there, but mainly she just saw my granddaughter who she adores – over and over.  One day while at my home, she saw my granddaughter arrive multiple times.  “Oh, there’s Peanut!”, mom would say.  And I just smiled and kept cooking.  We both acted like nothing had been said when no one entered the house.  Then she began approaching the door and beckoning her in, once even bending down and asking her if she was feeling better, only no one was there to answer.  When my son and his girlfriend were late arriving for dinner, she started seeing them.  Mom would walk to the door, look out and announce that they were finally there.  Again, I just smiled.  It did no good to correct her.  She saw people arrive at least 15 times. Her hallucinations were the worse I’d seen.

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Christmas was an interesting time.   Mentally, Mom had now become the child of the family.  Christmas Day she couldn’t wait to open presents and ripped hers open before all of the family had even arrived.  I had baked a lovely cake for dessert and when no one was looking mom whipped out a knife, cut herself a piece, ate it, turned the missing part of the cake to the wall and stood next to it looking innocent.  The only sign anything was amiss were the crumbs on the counter.  We still haven’t figured out how she pulled that off since there were five people standing  around her and no one saw a thing.  It was such a bittersweet time.  On the one hand I was extremely thankful that mom was still with us and cancer free, yet I couldn’t help remembering Christmas just one year ago when all was fine and mom was still mom. 

What I was struggling with the most was how quickly things changed.  Every event, every holiday, my mind goes back to how things were a year ago.  Mom loves holidays.  Mom loves birthdays.  Every holiday was big.  She decorated the house for each event, Mardi Gras, Easter, Fourth of July,  Halloween, Thanksgiving, Christmas – everything.  She looked forward to celebrating with family.  And birthdays were always celebrated with a day of shopping and lunch.  This year when mom and dad came over for dinner on the day of my birthday, mom saw wrapping from the gift my daughter had given me.  “What’s the present for?” she asked.   “Today’s my birthday, mom.”  With a confused look on her face mom replied, “It is?  Well…happy birthday.”  And later I cried.  Not because she hadn’t remembered my birthday, I had had plenty of those.  But because of how much things had changed in less than a year.  For my birthday the previous year we had celebrated in our usual way and one year later she didn’t even remember the day in which she gave me life.

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A body heals.  A mind does not.  As fast as my mother’s body heals, her mind fades.  I have had a lot of time to reflect on my life, as her daughter, as her friend, as a person.  And how my mother’s love shaped me and molded me into the woman I am today.  There may come a time in her life when she no longer knows who I am.  But I know in my heart that she will always love me, even if she only sees a stranger looking back at her.

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The next week is a blur.  Dad stayed with mom at night and I during the day.  Try as they might mom would not get up and move the day after surgery.  The next evening mom continued her habit of not sleeping at night, but sleeping all day.  She kept dad awake as well and on the one occasion when he briefly fell asleep, she tried to climb out of bed.  It was a nightmare.  Someone made the decision to give her an ambien and she slept for the next two days and two nights, which meant no physical therapy.  Then it was the weekend and no physical therapists were around to work with her.  Mom is a diabetic and I had to continually watch her meals since she would have a large piece of chocolate cake on her plate or a box of juice that was not sugar-free.  Everything was a fight and a struggle.   The one good thing that came out of all of this is that I was able to spend lots of time with dad – just he and I talking about things we had never talked about before.  He told me about his time spent in the navy.  He was a frogman in the Korean War.   He’s never really talked much about his experiences in the war, but now it poured out like a purging of all that was evil.  Dad told me that in order to be a frogman you had to have perfect vision.  Dad had worn glasses since he was 10 years old.  He wanted to be a frogman so badly that he somehow got his hands on every eye test given and memorized them, thus passing and thereafter being accepted.  He told a story of standing next to his captain on the ship when they were under attack and having to grab the wheel and turn the ship around to escape.  When I asked about the captain he told me, “Well, his head was just blown off.  Went flying right by me.”  I was shocked, yet enthralled – not exactly what I was expecting.  He told me of being dropped off in enemy waters, swimming to the destination necessary for him to perform the task required and being given an exact time to meet back up with the ship.  If he wasn’t there he would be left.  So in the dark of night, with only the glow of the television lighting the room, we talked.  We shared stories about his childhood, about his parents and mostly about mom, and how we miss her. 

On Monday I received a call from dad.  His voice sounded panicked.  “They are sending your mom home today.”  That couldn’t be!  She had not even really received any physical therapy yet.  She could barely get out of bed and we had to call a nurse for assistance whenever she needed to get up.   I rushed to the hospital and was basically told it was a done deal.  Medicare only pays for a certain number of days and her time was up.  Nothing I could say or do would change anything.  

Someone came in to show us how to change the ostomy.   He first removed the old one and exposed the piece of mom’s colon that was now protruding through an opening in her side.  My stomach turned and I felt a little nauseous.  It was red and gooey looking, sort of like an infant’s navel.  The man was very cheery and made it sound and look so easy.  Of course, we later found it wasn’t quite as simple as he made it out to be.  And mom slept through the entire thing.  Then the doctor came in to remove the stitches.  Another thing I did not know about the removal of a person’s rectum is they stitch up the anus.  How awful!  Mom’s biggest complaint while in the hospital was that her bottom hurt.  I now know why.  Sitting, standing, laying down, it always just hurt.  And here was this doctor, the same one with very little bedside manner, squinting and complaining about the poor lighting, trying to remove the stitches that were holding my mother’s anus together.   Mom screamed in pain, begging him to stop.  I offered him my reading glasses since he obviously was having trouble and he accepted.  So here was this man wearing my cute little glasses with the flowers on the side, torturing my mother as he removed her stitches.  I held her hand and told her to squeeze as hard as she could until finally it was over.  And then I took her home where dad was waiting for her, preparing for her return.

Two days later mom was back in the hospital with a blood clot.  Great going Medicare.  Three more days in the hospital, another doctor and now months of coumadin.  Please God let this all be just a very bad dream.

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Thanksgiving Day 2010 – I have so much in my life to be thankful for.  In the midst of this storm I find myself in I try to remind myself of all the blessings that have been bestowed on me by my Lord.  The blessings of the last few days, spending time with my husband and daughter in New York City, is now ending and I must return to the reality of my life now.  And again that life takes an unexpected turn.  While in the airport awaiting our connecting flight my husband received a phone call from an elderly relative.   “We need some help.  Can you come tomorrow?”  This is a couple that we have always been very fond of.  She is 87, he is 92 and they live in Houston, about 200 miles from our home.   They have no children and he has no living relatives.   A few days prior he had some type of medical procedure in which they inserted cement into his back.  Apparently it was done out-patient because he was sent home the same day.  In my opinion, at 92 nothing should be out-patient, but what do I know.  Things didn’t go well and my husband’s aunt (we call her aunt but she is really his second cousin) called for an ambulance.  In her rush to get in her car and follow the ambulance, she slipped, fell and split her head open.   They were now both in the hospital.  So once home as I stayed to deal with my mother’s upcoming surgery, my husband left for Houston.  Little did we know at the time that he would be making this trip to Houston at least once a week for months.

I was encouraged when seeing mom again after several days of being away.  She looked good, more alert than I’d seen her in a while.  But I’ve come to learn that is the nature of the beast –  one day good, the next day awful.  Yet, I couldn’t help getting excited at the prospect of things maybe, possibly going back to normal.  On Monday, mom was admitted to the hospital to be prepped for her surgery the next day.  One can only image what that would entail.  What I didn’t realize is that the hospital staff would “prep” mom and then leave dad to deal with the aftermath.  Since the radiation and chemo she was already having trouble making it to the toilet in time and after the medication she was given to clean her out it was just impossible.  Dad spent the entire day cleaning up feces from the walls, floor, bathroom, bed and mom – it was awful.  When I arrived at the hospital after work and heard of the horrors they’d been through I was furious.  In my opinion there was no excuse for leaving an 82-year-old man to deal with this by himself.  But my dad is a proud man and would never ask for help.  Mom had nothing to eat or drink since Sunday night at midnight and she was exhausted and hungry and she would be given nothing until after the surgery tomorrow.  That is extremely difficult for anyone much less a 77-year-old with diabetes and dementia.

My sister and I arrived at the hospital early Tuesday morning.  Dad had spent the night with mom.  He will not leave her side unless we force him.  We were told the surgery would take place around noon, a very long time to wait, especially for my mother.  When noon came and went and she was still in her room we asked the nurse to check on any changes.  We were then told that the doctor would arrive about 1:00 p.m.  I think to appease us, they came to get mom around 1:00 and moved us down to the surgery waiting room.  And wait we did.  Occasionally someone would let us know that the doctor was still not there.   Finally, around 6:00 in the evening we were informed that the doctor had finally arrived and surgery would be starting shortly.  Surgery took about an hour and a half and then we spoke briefly with the doctor.  He had little to say other than it went okay.  He still was not terribly warm and fuzzy.  Dad asked the doctor if he thought he had gotten all the cancer.  He simply gave us the same shrug of the shoulders we had seen on our first visit and said “I think so.”  Very comforting. 

We went back to mom’s room to wait for her return and when they brought her back she looked awful.  I guess everyone does after having their rectum removed.   We stayed with her for several hours, talking to her, caressing her hands and arms, trying to awaken her, but she refused.  I guess it was best since the next few days would leave her in terrible pain.  Dad spend the night with her, as I knew he would, and I went home for a few hours of sleep.  It had been a very long day.

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