Scared and Stubborn

Dad has Alzheimer (Dementia) and can barely see!  I try to take him with me when I run errands, go to church, go shopping, and visit other people.  Can you imagine me weighing in at one hundred and twenty six pounds,  five foot seven inches tall and lean in stature?  Dad is tall also but losing weight, yet he is still heavier and bigger than me.  I have to lead him as he walks with his cane or he has to hold onto my forearm and walk along side me.  This in itself is very difficult.  I am energetic and somewhat hyper.  Dad is slow and more laid-back.  So on many occasions, I must remember to slow down for my father so that he does not trip, stumble or fall while walking when we are out and about.

This disease must play tricks on the mind and dad tricks me on many occasions.  When I drive I always ask dad if he can see certain things.  I ask this to keep him talking, thinking and engaged.  Sometimes daddy will say, “I can’t see that” and sometimes dad says “yes, I see that”.  Now, I am truly confused.  Does this disease effect the person off and on with various things or have the person able sometime and not able another time?  Does the vision come and go?  Does the memory also come and go?  I am not sure at this point.

Dad and I have been out and I will ask dad if he wants to come into the store with me.  Dad sometimes goes along but a lot of the times, dad  refuses to get out of the vehicle.  Sometimes he is calm, nice and polite when he says, “you go on in, I will be here in the car when you get back”.  Dad will go in the store on most occasions. It is so risky to leave dad in the car by himself.  I am afraid that he may forget why he is in the car and decide to get out of the car?  Dad could wonder around lost.  Dad could get hurt.  Someone might steal my daddy.

Twice my dad has disappeared from the car in my presence.  Once I had to go to Staples and dad had refused to get out of the car.  I couldn’t have been in the store too long but when I came out, the car alarm was sounding off and dad said he did not know anything about it.  Well, I had locked dad in the car for safety and dad obviously had attempted to open the car doors.  This triggered the car alarm.  The other time I had to go to the UPS Store to mail some letters out.  Again, I couldn’t have been in the store long.  When I returned back to the car, dad was gone.  I looked over the parking lot area and spotted dad walking blindly about.  I ran over to dad and asked where are you going? Dad simply and calmly replied, “to the bathroom”.

What’s going on?

Dad is now wearing “depends” underwear as a precautionary measure against wet clothes and bed-wetting.  I have been purchasing size S-M from the CVS Pharmacy but I am not too sure this is the right size.  I won’t lie when I say that it is hard to establish and follow procedures daily with someone who has been diagnosed with Alzheimer (Dementia) and is visually impaired.  For one, how can dad remember what he is told?  He can’t!  For months now, I have said dad time to wake up, wash up and get dressed for breakfast.  I personally don’t see why he can’t just come to the dining room table with his pajamas and housecoat on to eat breakfast while it is hot and fresh.  But somewhere in the routine and history of this family, we must have been raised to do the following things first and foremost: Wake up, wash your face, brush your teeth, get dressed, come to the table to eat.  I don’t care what I say, my dad follows this procedure to the book almost everyday.  Don’t ask me how long it takes him to position himself.  I am still trying to figure this one out.  If I get dad up at 10:30 am and go back to check on his progress, dad is still sitting in the same spot and he has not moved.  So then the task begins to unfold.  I am now walking back and forth in between cooking to check on dad’s progress towards being able to get to the dining room table for his meal.

Getting dad together and ready is a challenge.  I remember, that I once burnt the food and had to start the meal all over again because I kept running back and forth to his bedroom, checking on his progress.  If the word flexible, multi-task, open minded, did not exist, they would be created at this moment because caring for someone requires these dynamic skill sets.  It is a job to care for another person.  It is a job to care for anything including yourself.  It is not a burden but it is definitely hard work.  Your life will forever be changed.

As dad changes and the disease progresses, something new has taken place.  Dad now goes to the bathroom and kneels down to urinate into the toilet.  I do not know where he got that action from.  I do not know if he thought it up on his own or pulled that trick out of his bag of tricks.  I do not know why he does that.  I can only say that the first time I ever saw dad kneeling at the toilet with the bathroom door wide open, I took a second look and asked, ” what’s going on?”

I’ll have some of that

The decision to relocate dad to Maryland to live with me was sudden. I had no idea about his previous living style or eating habits.  I did notice that his former spouse had prepared and stored foods that had been canned.  The cabinets were fully stocked as well as the refrigerator and freezer.  I think  he had enjoyed pig feet, goat, deer, rabbit, pig tails, macaroni and cheese, chicken feet, ham hocks, beef, liver, fried chicken, collard greens, chitterlings, candied yams, ox tails, jerk chicken, roast beef, string beans, biscuits, grits, eggs, bacon, sausage and the likes of home style southern cooking.  Dad also had a touch of diabetes that we were unaware of when we picked him up.

It took me a while to review all of dad’s papers, medical records, files and follow up with all of his doctors.  Of course, with dad living with me and my family, I certainly could not afford financially to purchase special dietary foods for dad, so I did the next best thing.  I introduced dad to the way that we eat.  After many salads, smoothies, vegetable drinks, wheat, soy, grains, tofu, steamed vegetables, no fried foods, less dairy, soups, no beef, no pork, and whole grains,  dad was re-examined and there are no longer any traces of diabetes.  Great!  I think somewhere down the line, someone said that we are what we eat.  I am prone to believe that now having seen where dad was and now look at where he is in the dietary department.   I think many people continue to eat whatever they are familiar with from the childhood through adulthood based on learned family eating habits with their family.  Over the years, I have introduced my palate to different taste to include natural herbs, spices and seasonings.  We have introduced and shared the same things to dad.

It’s funny now, but when we cook, dad cannot smell.  But he can hear!  Dad eats good.  Dad has a healthy appetite.  He never leaves any food on his plate and he takes his time to eat slowly.  I don’t care what time of day it is, if dad hears you preparing any food, he always blurts out ” I’ll have some of that”…  What’s even funnier is that , dad just ate!

How is dad doing?

I want to personally say “thank you ” to all of my friends, associates and students who ask me “how is your dad doing?”  My response:  He is well.  In reality, you know that this disease is livable but does progress within the individual.  There is no cure yet and there is no turning back.  My dad is walking at a much slower pace.  He is walking with much difficulty because he is beyond “low vision”; he is near blind.  The other day I suggested to dad that he make his bed after he gets dressed.  Dad’s comment to me was “I can’t see the bed”.  I quickly responded back to dad by saying, “daddy you can just feel for the sheets, pillows and blanket” .  I guess I am trying to keep him engaged and active in some fashion.  But you know, my daughter made a interested observation the other day when she said, “mom, grandpa is now eighty-four years old and he really does not have to do anything, anymore”.  Bam!  She made a valid point.  My dad is retired.  My dad is older now.  My dad has a few barriers.  My dad has paid his dues.  My dad can simply now just “chill”.

When I think back on this journey with my father, it is pretty awesome and pretty sad at the same time.  Dad has now been with me for four years.  It does not seem like yesterday; it absolutely feels long.  Everyday is a challenge.  Everyday something new takes place in dads life.  The family is trying to handle things and manage dad but we are weary.  Some days funny things take place and other days sad things are noticed.  I notice dad starring straight ahead as the television plays because he cannot see the images on the screen.  I notice dad walking slowly with and without a cane, feeling for walls and objects to direct his walk.  I notice that dad now eats his food with his eyes closed.  I noticed that dad cannot smell anything.

How is dad doing?  Dad is well.

Dad and Dementia

I understand clearly that mail is not to be tampered with, but one of the most remarkable things about mail, is that it gets delivered. You and I may miss a phone call, or a text message or an email, but rarely we we miss mail.

Early in September, I received someone mail in error. It was an open post card. I read it before I placed it back in the mailbox marked, “not at this residency” and found the information to be intriguing. The post card addressed to someone else was actually a public and open invitation to anyone interested “Understanding Dementia”. The flyer disclosed the dates, times and locations of this seminar to take place right here in Maryland. I quickly zeroxed the flyer and registered. That was the continuation of my story.

I read more about the sponsor, The Institute for Natural Resources and the instructor, Dr. Nikita Katz (M.D., Ph.D) whom is a full time physician-lecturer for INR. INR is a non-profit scientific organization dedicated to research and education in the fields of science and medicine. You can look them up at info@inrseminars.com and http://www.inrseminars.com

Further reading about the seminar revealed that the seminar offered 6 contact hours (0.6 CEU) associated with this course. So if you are a Registered Nurse (RN’s), Licensed Practical Nurse (LPNs), Pharmacists, Registered Dietitians and DTRs, Psychologists, Social Workers, Occupational Therapists, Physical Therapists, Case Managers, Nursing Home Administrators, Massage Therapists, Counselors, Other Health Professionals (caregivers); this course is for you. This course at the seminar will satisfy any needed credit updates to assist with continued licensing for some professions named. Even tho, I was a caregiver for my loved ones ( Dad and Mon), I felt like the information shared at this education seminar would be fruitful. And it was. There I sat among doctors, nurses, and other professionals and my was the room full. The room had nine seats across (horizontally) and nine rows of seating (chairs). I estimated 178 people in attendance who arrived on time at 7:45 am. The seminar was held in College Park, Maryland just up from UMUC. The seminar was to end at 3:30 p.m. on Friday, September 27, 2013 for that day. Once a patient has been diagnosed with true Alzheimers/Dementia, the patient has as 7-10 year life expectancy. Wow! Are you serious, I thought? The speaker said once the onset, the disease moves rapidly and irreversible happenings occur. Fact or Fiction: Do crosswords puzzles, games, and Sudoku work to decrease Dementia?Alzheimer? No. But it does not hurt the patient either. Of course, keeping the patient engaged in some type of intellectual life style , etc., keeps the brain busy, occupied, and trained. With that in mind, normalization of “sleep” is very important for all of us.

I have noticed my dad getting less hours of sleep. If I do not let my father know what time of day it is, my dad will sit on one spot on the couch forever. I literally mean that. I have to insist on daddy getting up to drink a glass of water. I have to ask him if he wants a snack or a meal. I have to encourage him to really use the bathroom to urine. I have to say, ” dad, it is nine o’clock p.m. and I am heading off to bed, okay?” Dad replies, ‘okay sugar, I will go in my room then.” I don’t see how he can sit in one spot, not moving about, for hours on hours. It is mind-blowing to me. I learned at the seminar that over 35 million doses of anti-depressants were prescribed in 2013. This is horrible I thought. I do not know why everyone is so depressed. Look around! Things are so beautiful, Buildings are coming up, businesses are being launched. Flowers, trees, and children are growing.

Further discussion on the subject of Dementia/Alzheimer solidified more facts, research and findings. I learned about The Mediterranean Diet, Caring for the Caregiver and Brain Food: The Role of Nutrients in Memory & Cognitive Function. One thing for sure, dad and dementia are not old friends.

State of Affairs

March, April, May and counting!  My calendar for work, home and personal commitments is full.  I realize I can not be in two places at the same time with all that has to be done.  Dad is still losing his wallet and coin purse by placing them in his special places, unknown to us, and then forgetting where he placed them.  Come to think of it, most people including all of us, also have very special places where we tuck things away.  I used to have a horrible time remembering where I placed my house keys.  I can’t tell you how many time I have come home to find no keys in my purse.  There was a time when my house keys were in the hands of at least four other friends.

My brother actually is in Medstar Washington Hospital on his birthday (March 22) and our entire family feels bad.  Lately, he has been going into the hospital monthly.  Dad ended up in Medstar Washington Hospital Center for pacemaker surgery around April 15, 2013.  That was really touch and go because dad did not know where he was or why he was in the hospital.  At one point, all three (Mom, Dad, and Ty) were in the hospital back-to-back in 2013.  The social worker finally found a place for my brother who desperately needed to go into Rehab or Assisted living because mommy, dad, and I can not care for him in the manner in which he needs the care.  The doctor had given him 5-6 months to live. My daughter and I caught up with him and visited him in Montgomery Hospice-Casey House after he’d been back in the hospital twice in one month during the attempt to transport him.  Because of the distance, the family wanted to get in out of Montgomery County and back into Prince George’s County.  We all tried everything we could to find him a place and to follow up on the notion that he would be placed on a list for a lung transplant.  We made phone calls, wrote letters and waited.  We prayed and talked to God daily.  There is still so much to do.  Health directives and power of attorney papers were completed earlier.  Ty was finally moved back to PG County, to Mandrin House.  Dad had doctor appointments for pacemaker, and eyes.  Mom had appointments with her respiratory therapist.  My brother was being cared for in impatient care hospice facilities.  The work schedule and the family schedule was a major concern, but I was going to make it work.  On Saturday, May 25, 2013 at 6:10 am, my brother Calvin Tyrone Brunson passed away.  R.I.P. my brother.

R.I.P. Tyrone Brunson (March 22, 1956-May 25, 2013)

Calvin Tyrone Brunson

Sibling Love

I had the worst sleep last night. I tossed and turned all night and cried my eyes out. I have been trying to call my brother, Tyrone for three days now and each time I call him, he is sleep. When I finally reached him on the phone, he said he could not talk and he sounded awful. My heart dropped. I am not a doctor and I do not want to feel guilty or put any blame on our family for his condition nor because he is now in Hospice. I know he really wants a lung transplant but I really do not know enough about anything to get some results. His pulmonary doctor is the same pulmonary doctor that out mother has. I really do not care for the doctor. It just feels like he is not a caring medical professional. This doctor never returns phone calls, or responds to the any written correspondence. I really love my brother and would just about do anything for him, but some things are beyond my control.

As I lay in bed last night, I remembered all of the good old happy fun filled days of our childhood. I remembered how mama left me in charge of the house and my little brother. I had to be in the 7th grade and in junior high school (Bertie Backus Jr High) located in Washington, D.C. Mama would make dinner before she left out for work. She would leave a note on the plate giving strict orders on how the food was to be distributed. Her note read,” one pork chop each for you and Tyrone, and two pork chops for your dad”, and those were some serious instructions. My job was to make it happen. So, when we both came home from school (latch key kids), I made sure we completed our homework, finished our house chores, and ate dinner just as mama instructed by six o’clock and bath for bed by nine o’clock p.m. Done! I was the organizer and in charge. I remembered when I was 17 years old and I joined one of my brothers music bands. My! My! My! I had some big fun then. I was the female vocalist and my baby brother who was larger than I in size and in the business protected me from every music predator. Smile! We performed at so many places and met a whole lot of people in the music industry. I remembered when my brother visited me in Los Angeles (LA) and let my daughter and I participate in is music video. Go to http://www.youtube.com and put in “Tyrone Brunson”. What a great time. I remembered when my brother was all healthy and happy in 2003 when he attended my wedding to Curtis Sharard Gilmore at Glendale Baptist Church in Capitol Heights, Maryland officiated by Pastor Anthony G. Maclin and Pastor Keith Byrd. Fast-forward to now and my talented baby brother does not have enough wind to walk from his bedroom to the bathroom and is now dependent on oxygen tanks. I really love my brother. If I hadn’t said it enough to him in my eyes, my smile, my hugs, and my caring for him now in his greatest time of need, I am writing it for the world to know. I really love my brother.

What to do! What to do! What to do!

I love a cool breeze cross my face in the late night air when the world is quiet and I love a fresh breeze early in the morning when the air is cool and the birds are singing.  This morning feels special and I and my family are blessed.  Everyday I think about publishing my book.  Everyday I ask myself how.  Every bit of money that I have truly goes towards family needs and family concerns other than my very own personal obligations.  Everyday I want to stop writing and end the story but I can’t.  Do you know that each minute a new piece of the puzzle of life creates a story never told?  The stories continue.  I feel like writing is my only outlet; it allows me to share and vent to the world about my fears, my joys, my hopes, my dreams, and my concerns.  Writing is my medicine right now and it is the only thing I do along with praying.

We have all been very busy!  My mother came home from the hospital after having been admitted to Medstar Washington Hospital Center in Washington, D.C. for treated for Pnuemonia.  My brother Tyrone is hospitalized and I do not know where.  My daughter, son and I will try to find out where he is.  We were told he had been to Medstar Washington Hospital Center, then transported to Manor Care, then to Suburban Hospital in Bethesday, then Washington Adventist Hospital and now he is at Casey House (Hospice).  Na and I drove to Casey House to visit him and check things out Wednesday, April 17, 2013 right after work.  What a nice staff and beautiful facility.  Prior to that date, I took our father to Kaiser-Capitol Hill on Friday, April 12th, for a routine eye exam in Ophthamology and they discovered that dad’s heart rate was 26-27.  Dad was rushed to Medstar Washington Hospital Center and it was determined that dad needed a “pace-maker” immediately.  After much testing and assessments, dad was given a temporary one.  During the course of the weekend, dad pulled it out.  Cardiology scheduled the Pacemaker Implantation for Monday, April 15, 2013 and during the procedure, dad experienced Arrhythmia. Dad progressed and was released from the hospital on April 18, 2013.  Somehow in the midst of the on-going health concerns of father, mother and brother, my grand-daughter has been missing (MIA) for about two weeks now.  She has a history of running away.  I have often wondered, “from what”?  The same night daddy was released from the hospital, the police called to say that they had apprehended my grand-daughter for “shop-lifting” and would be returning her home to her mother.  God does answer prayers.  I had begun to think that my constant and fervent prayer was a hoax.  It had appeared that the more I prayed, the harder life, circumstances and daily living became.  But God is in control, has all power and knows best!  The police did mention that they would not close her case because he predicted that she will run again.  The police stated that in most cases of teen runaways, they predominately come from grounded, good, families.  I know that our family is weary.  I know that our current status does not offer an encouraging smile.  I know that we all are upset with the government, social services, and other entities that dictate the quality of life for all of our sick loved ones.  Since 2010, I have been asking my husband if he could change his work schedule to help me out.  Now some three years later, I am still asking that same question.  I won’t comment on what he said to me.  I am going to let you figure it out.

My hair has not been washed in ninety days.  I keep buying clothes from the thrift stores, people keep me clothes to wear and I keep recycling them all.  I look smaller to myself in the mirror, afterall, I came to Maryland from a twelve year stay in Los Angeles, California ony weighing in at 90 pounds.  Since 1990 to 2013, I have gained weight and now weigh a whooping 126 pounds at 5’7″ tall.  If it were not the Lord, wigs, weaves, braids, makeup and creative wardrobe styling skills, I would look like a “train wreck” waiting to happen.  Thank God!  I have been busier than ever with trying to complete the following things: pick up another replacement cricket cell phone, pick up my car from the shop (brake work), return the rental car, mail nineteen pages of medical bills to South County social services for my brother, contact someone at social services on behalf of my brother, fax nineteen pages to three people at social services the proof of medical bills for my brother averaging $220K, contact friends and board members for the Center for Leadership and Social Development.  By the way, did I mention that my daughter and I started a non-profit (501C3) organization that provides wrap around social services for Youth and Young Adults with development of leadership and social skills in the midst of all of this?  My days and nights are full of agenda’s, errands, task, and things to do.  I am continuing to do the following:  pick up mommy’s prescriptions from CVS on Marlboro Pike in Forestville, Maryland, celebrate mom’s birthday April 21st (card, flowers, dinner), pick up pictures processed at Rite-Aid on Silver Hill Road, drop off class room CD’s used back to the library, obtain a PO Box for CLSD, call the Lupus Foundation so that we can donate all of my recycled clothing and things, trash living room curtains that the little dog “poouchie” continues to piss on, mop all the floors in the house, buy some soap powder, create dad’s living will, unenroll in the automatic bill payment system for a few bills, complete the 990 tax form for CLSD (non-profits), create a business bank account for CLSD, create Power of Attorney paperwork for my brother, and complete the Advance Directive paperwork for my brother.  Whew!  Can I get a nap now? 

I visited mom the other day and she asked me, ” would you have taken on the job, if you knew it would be this hard”?  And I replied, are you talking about my promotion at UPO to Program Manager of Adult Education and Training or what?  She said, “your dad”!  I responded, ” Yes, I would have taken on the job.  He is my father.  He was all alone.  You are my mother and you are all alone.  Ty is my brother and he too is all alone.  What would Jesus do?  I did not know what to do, but I am trying.  You are all my family and I love you all and I care very much.  I hope that when I am old and gray and unable to care for myself, that someone will show me the love of God and treat me well.

Weekend wonder…

It used to be easy to blog daily because for a while I was a computer trainer and I lived on the computer 24/7 continuously looking for new stuff for the computer students to do. But the past nine months have been tough. Our family is unusual. We have so much drama, responsibilities and things to do list. Saturday week ending March ninth , I woke up early to read 30 day old mail, pay bills, check accounts, shred papers, file and sort everyone’s stuff. I managed to run errands outside of the home doing these things: go to Bank of America, call BB&T bank rep, write a letter to the BRW civic association, download a document from the North Carolina Courts,get some forms notarized, mail stuff off, check on tickets at the Warner for the play, “My Brother Marvin”, purchase three belated birthday cards, return two CARMD devices, go to TD Bank, order a Square.com and meet with tax preparer. I did it all! Hubby took dad to get a haircut at the barber.

Sunday approached and we prepared for church. Dad’s wash cloth was dry and we knew he had not washed before getting dressed for church. Hubby suggested a light wash-up for dad but nothing happened. I told dad he needed to wash and that is when the bull struck the matador. Dad raised his eyebrows, pointed his hand and told me where to go. Dad said he had washed and no one was going to tell him he had not. I let dad feel his “dry” wash cloth and he still stuck with his story. He did not notice that the wash cloth was dry. It never dawned on me that maybe dad could not see the wash cloth clearly enough to distinguish that being his cloth. Maybe dad thought we just took one out of the linen closet to aggravate and harass him. We all tried to convince dad to wash. We all forgot that we had entered into Dementia World. No rhyme or reason was going to matter at this point. Nothing we said or did mattered, because dad had made up his mind and he said he had washed. Seconds later, dad said he was going to stay home and not go to church. Hubby and I at that point informed the family and proceeded to continue dressing for service. Curt had fixed breakfast. Curt got a bowl of oatmeal and a spoon. I grabbed some yogurt. We headed to the door and dad followed us to the car and got in. Dad, Curt and I made it to church one hour and fifteen minutes late even with daylight savings time and we were able to pick up my friend Theresa who wanted to ride with us! As I sat in church, I could hear the morning discussion that dad, hubby and I had just had. I could envision a little kid placing hands over his ears and saying, blah! blah! blah! and I smiled. Dad didn’t do that, but I felt like we acted like kids. One of the things the family counselors tell us and in all of the reading materials about Alzheimer and Dementia, is that caregivers, adult siblings cannot become parents to their ill parents. That is a thin line especially when you are trying to care for someone.