A Change of Plans (Leaving Rehab)

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My mother was hospitalized for the second time in rehab due to extreme stomach pains. She had stopped eating and lost a lot of weight.

 

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By this point, she was no longer taking Lisinopril (high blood pressure medication). Her blood pressure had actually  normalized thanks to an Ayurvedic home remedy–a cup of hot water with a teaspoon of honey and 5-10 drops of apple cider vinegar each morning before breakfast.  But she was still taking Aggrenox (a blood thinner) and Lipitor (for cholesterol-even though she did not have a cholesterol problem).

 

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Initially, the Emergency Room doctors thought our mom’s stomach pain was due to gallstones. The scans, however, showed no gallstones. Nevertheless, they still wanted to do  exploratory surgery to make sure. The surgeon in charge said she did not feel comfortable operating on someone who was already compromised by stroke.  She said her gut instinct was that our mom was having a poor reaction to the Lipitor.  The surgeon was very concerned about our mom’s elevated liver enzymes.  She immediately discontinued the Lipitor believing this medication was causing  the problem.  The surgeon explained that  Aggrenox is often paired with Lipitor because (for some stroke patients) these drugs work synergistically– even if there are no cholesterol issues. However, she said, “Not all drugs are effective for all people. Some can do more harm than good.”

 

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One day after the Lipitor was discontinued, our mother started eating again.  She was then able to go back to the rehab/nursing home.

 

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Although our mom was eating– by this point she had completely given  up on her physical therapy.  She even resorted to falling asleep in the PT gym.   She was becoming increasingly more despondent and depressed– repeating over and over that she would never get better. The therapists kindly explained to her that recovery takes time.  My mom’s Occupational Therapist even gave her a pep talk for encouragement. She responded by telling him that we (her daughters) had abandoned her.

 

 

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After 3 months in the nursing home, our mother was an emotional wreck.  She could be laughing  one moment, then suddenly  crying the next. She was confused and disoriented. She even said she wanted to die.  She also spent hours perseverating on nonsensical themes.

 

 

 

I was afraid our mother would not survive another week  in inpatient care.  Her initial plan was to stay in rehab “until I can walk,” she said.  But we needed to change plans.

 

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It was time to bring her home. The social worker at the facility then started the 3 day discharge process.  The social worker  arranged for continued outpatient speech therapy, occupational therapy and physical therapy at a different facility.

 

 

 

On a rainy day in late April, my sisters and I  nervously brought our mother home.

 

 

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A Sort of Déjà vu

 

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My mother, Alberta, arrived at her new inpatient rehab/ nursing home by ambulance. She  had only one bag carrying three medications (Aggrenox, Lipitor and Lisinopril) from the hospital with her.  She was wearing a hospital gown, socks and pull-up style diapers.  My mother had grown so weak and frail during her  hospital stay that she had completely given up on any attempt at  using a toilet. This is when her nearly 9 month dependency on diapers started.

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My mother was hospitalized twice while in the nursing home.  Once was for a Urinary Tract Infection.  I later learned that “most of the residents get UTIs because they wear diapers.” The time when my mom got a UTI was when she was left in her urine soaked and waste laden diaper until morning.  The night staff  was mostly interested in sleeping, not working.  Although my mom called for help with the call button, no one came. Unfortunately, the night staff was also not well educated about the different needs of the different residents.   A more effective approach would be to train the staff about what it means to have stroke.  Or what it means to have Parkinson’s. Or what is means to have Dementia.  Regardless of the condition of the residents, the true missing component of the night staff was compassion.

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The daytime nursing staff at the facility was great.  They were always busy–but for the most part–they were kind, caring and attentive. My sisters and I practically lived there.  The daytime nursing staff even knew our schedules.  My older sister Aellyn was there from the early morning hours until about 9:45 am when my twin sister and I would arrive.  At around noon,  my twin sister and I would leave the facility, go to the office (and mostly refer patients to other psychiatrists).  Then we’d go home for lunch, walk Kookaburra and then return to the nursing home and stay until dinner when our older sister would come back and stay until it was time for our mother to go to sleep at around 8:00 p.m.

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My mother had daily Physical Therapy, Occupational Therapy and Speech Therapy.   My mother appreciated all of her therapists.   But she particularly adored her Speech Therapist and her Occupational Therapist.

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From the moment I saw my mom’s Occupational Therapist I had a strong feeling that I knew him.  It was  an unusual experience– but not an unfamiliar one for me.  I had a feeling like this once before when I got extended eye contact with Ricky Martin.  Yep, that Ricky Martin! It may sound odd, but I think different realities/past lives must sometimes overlap and something like a bleed through happens.  Did I seem familiar to my mom’s Occupational Therapist?  We’ll never know for sure.  But one time, it kind of seemed like maybe, perhaps he did remember our romance in 4th century China.  He was assisting me and my twin sister in the bathroom with our mother when suddenly our mom was about to fall over on me.  I stabilized my mom. Then I noticed hands around my waist and a thumb gently caressing and stroking my back.  It was the Occupational Therapist!  I turned around– he  was intensely blushing and his beard was all fluffy.  When I later told my twin sister, she said, the Occupational Therapist was just acting and reacting from “plain animal instinct.  Nothing more.”

 

7 Nights to Go Crazy (Hospital Horrors)

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The morning after the E.R. visit, an MRI revealed that our mom did  indeed have an ischemic stroke.

Types of Stroke (from http://www.strokeassociation.org):

  • Ischemic stroke occurs as a result of an obstruction within a blood vessel supplying blood to the brain. It accounts for 87 percent of all stroke cases.
  • Hemorrhagic stroke occurs when a weakened blood vessel ruptures. Two types of weakened blood vessels usually cause hemorrhagic stroke: aneurysms and arteriovenous malformations (AVMs). But the most common cause of hemorrhagic stroke is uncontrolled hypertension (high blood pressure).
  • TIA (transient ischemic attack) is caused by a temporary clot. Often called a “mini stroke”, these warning strokes should be taken very seriously.

According to the neurologist, in addition to the ischemic stroke, it was also clear that our mother  had been having  mini strokes (TIAs) or infarcts on the right side of her brain for sometime– all contributing to her  left side weakness.

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FYI:  In order for  insurance to pay for  any kind of inpatient rehabilitation, a patient is required to stay 3 nights in a hospital.

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Initially, our mom was on track to stay the 3 nights at the hospital.  The neurologist even anticipated that she would need only 2 weeks of inpatient rehab after that.  But because of one hospital related blunder after the next, our mom’s stay was extended to 7 nights at the hospital.  Things got so bad that my sister, Aellyn, decided to stay overnight in the hospital room with our mother.  Our mom experienced everything from poor sanitation, to medication mishaps to insane roommates,  to a broken bed,  a broken toilet,  insomnia, severe diarrhea, severe dehydration, blood pressure spikes and drops, difficulties finding inpatient rehabs (that would accept patients from this horrible hospital) and no weekend doctors on duty to help.  The no weekend doctor part was the most egregious. Can you imagine a hospital with no weekend doctors?  The day (and night) our mom experienced severe diarrhea, my twin sister, Akwelle,  had to threaten to call 911 to get the E.R. doctor to come up and care for our mother.  “Well, the only  doc on duty is in the E.R. right now. And he’s busy with E.R. stuff,” said Nurse Amber.  “If you don’t get that doctor up here, I will call the police and they will do it for you,” said  Akwelle to the Nurse Supervisor.  Those were the magic words because  Dr. Emergency Room came right up!

 

The hospital stay took a real toll on our mom.  By the end of the  7 nights, our beautiful mother, Alberta, was broken.  She was physically, mentally and emotionally drained.  She had aged at least 20 years in that one week.  She begged us to get her out of there.

 

Finally, on the 7th night, we were able to get our mother into an  inpatient nursing home/ rehabilitation facility.

 

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At the E.R.

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On the walk to the Emergency Room,  our mother kept insisting that she was ok. My twin sister pointed out a penny on the sidewalk. “See there.  Pick it up. That’s a good sign,” said our mother.  She then said she was going to tell the E.R. doc that she injured herself falling the night before.  But when we got to the E.R. my twin sister, Akwelle, immediately told the E.R. receptionist that she thought our mom was having a stroke.  Our mom was rushed to an examining room.  “Code Red:  Stroke,” was announced over the loud speaker.  My mom was allowed only one visitor in the examining room. My twin sister stayed with her while I sat in the E.R. lounge.

 

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I started  thinking about how earlier in the week, at home, I had seen a little white cloud in the house. It was slowly floating, rotating like a wheel through the breakfast room.  “Was that a sign of something bad or something good?” I thought.   I had also seen this weird lady at the grocery store. She  had this thin cob-web like string  coming from the top of her head.  It moved with her wherever she went.  I could not figure out where it originated.  I blinked my eyes several times but I still saw it.  I must admit it–every once in awhile I do see unusual things.

 

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Back in the E.R. waiting area, I finally decided I should just go back to sit with my mom and twin sister. I figured the E.R. check in people were not keeping track of which one of us (twins) was where anyhow. This worked out perfectly. The E.R. doc was talking to my sister outside the examining room.  She said the Cat Scan showed no bleeding on the brain but she said she was concerned because clearly our mom was either having  a TIA or a real stroke.  She talked  about a drug called tPA (tissue plasminogen activator) that she could give our mom.  “But, I won’t– because there’s only a short window to give this drug and if your mom had a TIA last night and then another one today, then that window has closed.  It is too dangerous. It could even  kill her.  There is no way I am risking that.  She will have to stay here overnight for observation,” she said.

  • tPA or tissue plasminogen activator (from http://www.strokeassociation.org):
    The only FDA approved treatment for ischemic strokes is tissue plasminogen activator (tPA, also known as IV rtPA, given through an IV in the arm). tPA works by dissolving the clot and improving blood flow to the part of the brain being deprived of blood flow. If administered within 3 hours(and up to 4.5 hours in certain eligible patients), tPA may improve the chances of recovering from a stroke. A significant number of stroke victims don’t get to the hospital in time for tPA treatment; this is why it’s so important to identify a stroke immediately.

My twin sister and I went into the examining room to sit with our mother.   She was eating a turkey sandwich.  “You should go home.  I am fine.  Pick me up tomorrow. Go home and walk Kookaburra,” she said.

 

A Proper Introduction

 

My parents, Ken and Alberta, first met in Chicago in 1950. My dad had a car and his best friend asked him if he could take him to a girl’s house to ask her to a dance.  The girl was my mother’s older sister, Frankie.  Instead of staying in the car, my dad decided to go into the house too. He was curious about the house because he had heard stories about the lady (my great grandmother) who was a psychic medium and held seances every night in the basement. As my dad was wandering through the house (on his way to the seance room) he ran right into my great grandmother who promptly  redirected him and told him he could wait for his friend in the living room. My mother happened to be in the living room watching t.v. My dad introduced himself  and asked my mom if she wanted to go to the dance with him. She said yes. At the dance, my dad danced with every girl except my mom. After that, my parents went their separate ways. My dad was invited into the Marine Corps and my mom taught school for awhile before eventually leaving Chicago to attend medical school.

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Ten (+)  years later when my mom finished medical school, she sent my dad an invitation to her graduation. My dad did not go to the graduation. Instead, when my mom returned home to Chicago, he took her to dinner to celebrate. They were married within the year.

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Soon, my older sister, Aellyn, was born and then my middle sister, Ayn, came along. My father always told my mom that he wanted a big family. At that time, my mom was content with just the two girls. By then, my mom had become a child Psychiatrist (specializing in children ages 11 and under).  She was very busy.  But, my dad, as usual, had a special knack for getting things to go his way.

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At that time, my dad was an avid African Art collector. A friend of his had given him a pair of Ibeji dolls (fertility dolls from Ghana). The friend cautioned my dad about keeping the dolls together.  He also advised my dad against keeping them in the bedroom— that is, if he intended to have no more children. Naturally, my dad put the dolls in the bedroom (he wanted a big family).

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Nine months later, my twin sister, Akwelle and I were born. My dad made sure to give us Ghanaian names. In protest, my mother called us “Baby A” and “Baby B” for quite awhile. She was not thrilled with these unusual names from Ghana. Akwelle means first born female twin and Akuokuo means second born female twin. Had we been boys, my dad planned on naming us Romulus and Remus (after the founder’s of Rome).

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When I was a senior at Brown University, I wrote my parents detailing my plans of “exploring the arts” for the rest of my life starting with cooking school. My father was amused.  My mother had a fit.  “I did not pay all that money for you to end up in somebody’s kitchen,” she said.  I became the office manager of my mom’s psychiatric practice and explored the arts in my free time.

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My twin s sister, Akwelle, is my mom’s assistant.

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My older sister, Aellyn, is a behavioral therapist—also working in my mom’s practice as well as a singer/ songwriter. She has two children, Amy (recent college grad.) and Kenneth (currently in acting school).

My middle sister, Ayn, is a psychologist specializing in PTSD.  She is not currently actively participating in our mom’s stroke recovery.

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We all have different ways of coping with stress. When my father was ill with non-hodgkins lymphoma, my middle sister, Ayn, did the same thing. She just could not be present for the day to day process.

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Instead she chose to wait it out, thinking things would get better once our dad finished treatment. His treatment was progressing well, but he contracted pneumonia and quickly died. This devastated my middle sister Ayn.  She has truly never been the same since. Again, we all have different ways of coping with stress.  Some, of course,  are more productive than others.

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I, for example, love Keith Urban. I got the Player by Keith Urban  DVDs for Christmas.  I am learning to play the guitar.

 

 

Of course, I also have a serious chocolate problem.

 

 

And, I am the reigning fantasy daydreaming queen.  I often find myself looking into the sky, watching the clouds.  Suddenly, I am transported to an alternate reality where Keith Urban and I live in New Mexico on our avocado ranch. We are raising our triplet boys Kash, Koal and Kolt. Keith is a gentleman farmer and I am a ceramicist.  All in good fun!

 

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My twin sister, Akwelle, on the other hand, has been coping with stress by writing. Her latest blog is called Make Some Dough (a dough diary).  Click the link below to take a look:

http://www.makesomedoughblog.wordpress.com

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It is not easy being a caretaker for a parent.   It is not easy seeing them down and out. But maybe one day my middle sister will visit our mother.   And maybe she too will find strength in our mom’s will to survive.  To her credit, Ayn did play a pivotal role in getting an abusive  night time aide fired at the nursing home/ rehab facility where our mom spent 3 months of her recovery.

 

 

I almost forgot to mention our two very special canine family members. Kookaburra (Lab/ Border Collie mix) and Brooke (Sheltie).  They are true healers!

 

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Once Upon a Time

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Some people might think our family is unusual. We work together. We vacation together.  We celebrate together.  Some of us even live together.  All of that is normal for me.

 

 

One of the great things about being around each other so much is that when one of us is out of balance or out of sync– it’s easy to see.  But, just because it’s easy to see, does not mean it is so easy to do anything about it.  Especially, if you do not know what a Transient Ischemic Attack (TIA) looks like or even means.

Transient Ischemic Attack (TIA) – Symptoms (from WebMD)

A transient ischemic attack (TIA) is a warning: It means you are likely to have a stroke in the future. If you think you are having a TIA, call 911 or other emergency services right away. Early treatment can help prevent a stroke. If you think you had a TIA but your symptoms went away, you still need to call your doctor right away.

Symptoms of transient ischemic attacks (TIAs) occur suddenly and are always temporary. They usually go away in 10 to 20 minutes. TIA symptoms are just like stroke symptoms. They vary depending on which part of the brain is affected.

Common symptoms of TIA may include:

  • Sudden numbness, tingling, weakness, or loss of movement in your face, arm, or leg, especially on only one side of your body.
  • Sudden vision changes.
  • Sudden trouble speaking.
  • Sudden confusion or trouble understanding simple statements.
  • Sudden problems with walking or balance.

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On Sunday December 13, 2015, our family went to brunch to celebrate both my older sister Aellyn’s birthday (December 14th) and my mom Alberta’s (December 15th) birthday (85th!) at a new restaurant in town.  It was great.  In this photo, my mom is wearing the sweater I gave her.  My mom was in a particularly good mood.  She is a party animal!

 

By Christmas, I started to get a little worried about my mom.  We went to the movies and I noticed her stumbling up the stairs to the seats.  Her left leg was wobbly and she seemed to be dragging her left foot.  I stopped her and asked if she was ok.  She said she was fine.  Several hours later–by the time we were leaving the movie theater, my mom was walking normally again.  But her speech was a little slurred and her smile was noticeably crooked. When asked if everything was alright, my mom said, “I’m just a little tired.  That’s all.”  By the time we got home, her speech was back to normal and her smile was broad and wide.  But I knew something was wrong.   I just did not know what.

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