The Illusive Future

People worry, stew (as my mother use to say), and fret about what the future holds in store for them.  I have done that very thing most of my life.

There’s a song that was released in 1956, which Doris Day sang called, “Whatever Will Be Will Be.”  The chorus of that song goes like this:  “Que Sera Sera, whatever will be will be, the future’s not ours to see.  Que Sera Sera, whatever will be will be.”

When a crisis enters your life, time seems to stand still and there is nothing, but the present.  That happened to me in 2013.  I thought my husband would die in the hospital from meningitis.  Everyone around me moved on with their lives and it was almost as if my life ceased to exist, time stood still for 42 days.  People everywhere were doing things that seemed so unimportant to me.  They were wasting their time on silly, frivolous things.  I had done the same thing before my husband became ill.  People were planning their lives far into the future.  I thought to myself – live now, love each other, wake up – the future’s not ours to see.

I try to live in the moment anymore.  Have I planned what I will do tomorrow? Occasionally I have to do just that.  My goals have changed and I try to enjoy today, enjoy NOW.  Hug your loved ones, tell them you love them, because tomorrow may never be.♥

My Mother’s Hardships

My Mother, my precious Mother that I loved so much died in July 2002 in a nursing home with dementia.  I will always miss my Mother all of my days on this earth.  I hope someday God will let me join her in that wonderful place called Heaven.

Mom had a hard life, her family was poor and she lived during the “Great Depression” that began in August 1929 in the United States.  Mom was 11 years old when the depression began.  Hardships for Mom’s family were greatly compounded during this time.  I am not the greatest poet in the world, but I wrote this poem to honor my Mother.

• My Mother’s life was fraught with hardships.
• Growing up in a family that worked hard to survive,
• Experiencing the “Great Depression,” with little substance to stay alive.
• Marrying and finding life still wrought with hardships.
• But, blessed with children to love and nourish,
• A caring Mother who helped us grow and flourish.
• Still her life contained a great scope of hardships.
• No one could ask for a Mother who cared as much,
• Or a Mother that showed us such a loving touch.
• But, problems of life always bring hardships.
• My wish for my Mother was always peace in her last days,
• A time to enjoy life and to God give glory and praise.
• But, her latter years proved to contain exceeding hardships.
• The disease of Alzheimers taking my Mother’s mind away,
• Causing overwhelming sorrow, grief, and me to pray,
• Dear Lord, please take from my Mother these hardships.
• Release my Mother from this earth to Heaven in the sky,
• I know this should cause me joy, yet I cry.
• My Mother is with God in a place of no hardships!
• My Mother is on this earth no more and I will miss her,
• I cannot touch her and I cannot kiss her,
• But, she is at long last released from all of her hardships.

A Cappella Music

 

My daughter recently introduced me to a fantastic male a cappella group.  They are called “Home Free” – members are:  Austin Brown – high tenor, Rob Lundquist – tenor, Chris Rupp – Baritone, Adam Rupp – vocal percussionist, and Tim Foust – Bass.  They are originally from Mankato, Minnesota.

Home Free was the winning a cappella group of season 4 “The Sing Off” in 2013 on NBC. Their first album was “Crazy Life” which was released digitally January 14, 2014.

Check out YouTube videos of Home Free’s songs – “Ring of Fire” (featuring Avi Kaplan),  “All About the Bass”, they were fabulous on 2 Christmas songs – “Angles We Have Heard On High” and “Oh Holy Night.”

Adam Rupp is one of the best vocal percussionist I have ever heard.  Adam is a band in himself.  Love the vocal range of Tim Foust – bass  GO – A5.  Check these guys out, they would appeal to a wide span of age groups.  I love the music of these talented young men.

 

Guilt Is Gone, Replaced by Saddness

I wrote about having to travel to the nursing home yesterday to make decisions for my brother J.R.  I ask God to help me with the decisions I had to make, I cannot handle this alone anymore.  My family supports me, but I have to make all the hard final decisions. Because J.R. is becoming violent I had to decide whether to send him to a psych hospital for 2 or 3 weeks for evaluation or transfer him to another nursing home.  I had him in a psych unit last year for evaluation and I was not really happy about my decision.  I did not want to transfer J.R. to another nursing home and remove him from his familiar surroundings.   Changing a dementia patient’s surroundings is extremely hard on them.  I decided to send J.R. to the psych hospital.  I hope they can adjust J.R.’s medications and his violence can be controlled.

This problem arose because family members of other patients were upset with J.R.’s behavior.  I can understand that.  He would enter rooms of other patients day and night, because he could not sleep.  During the day he would stand in another patient’s room when they had visitors.  He would never say a word and this would make the visitors uncomfortable.  At night he would enter other patient’s rooms and wake them up, which would startle them.  At times he would grab their arm, but he never hurt them.  J.R. pinched the head nurse, called her by the name of his ex-business partner that stole his assets.  He would tell her to get away from him and leave him alone.  He tries to make other patients in the cafeteria stop eating and he eats food from their plates.  He has ask nurses to dance with him in the hall, which they say is fine.  The list of the things J.R. does goes on and on.

My daughter told me in the nursing home yesterday to let the guilt go.  I have let go of almost all of the guilt.  What I am having trouble with is the sadness of loss.  Loss of the person I loved and knew.  So I do hope my decision was the right one and we can leave J.R. in the familiar place he has lived these last few months.

Aggressiveness and Dementia

I am making the 100 mile trip tomorrow to visit the head of nursing at the nursing home where I placed my brother J.R., who has dementia.  Sunday after church I noticed the phone call and voicemail message from the nursing home.  J.R. had become aggressive when an aide tried to redirect him.  Before I tell you that story, let me tell you my story from my December 11, 2014 visit to that nursing home.

On December 11, 2014 my daughter and I went to the nursing home to visit J.R.  We had a good visit this day because J.R. was alert and talking.  We stayed at the nursing home about 1 1/2 hours and then walked to the front door to leave.  There was a patient sitting in her wheel chair directly in front of the door.  I knew they would not want her to go outside, so we hesitated, we did not try to open the door.  One of the nurses Jane (named changed) saw what was happening, all she said before she rushed down the hall was, “Wait I will go get Barbara (name changed),” and away she went.  A lady wanted to come in from outside, I saw she was not going to open the door and come in because of the woman in the wheel chair.  So, I walked toward the wheel chair, took the handles and pulled the wheel chair backward away from the door.  The lady outside came in the door.  Oh my, what a mistake that was to move the wheel chair.    I had no idea this patient could become so violent, the nurse that rushed down the hall to get Barbara did not tell me about that problem.  The patient in the wheel chair, looked around at me, with a vicious look on her face and swung her arm at me.  I jumped back, She threw out a string of profanity that would make a sailor blush, calling me some horrible names.  She came at me in her wheel chair telling me she was going to kill me.  I ran around a couch, she would try to come around the couch, I would do an about face, she would whirl and go the opposite direction.  Finally she stopped chasing me and went back to her position in front of the door.  Shortly after that Barbara arrived and tried to talk her out of going outside, saying it was cold.  I could tell Barbara was afraid of this lady.  Finally Barbara gave up and took the patient outside.  We left the nursing home.

If I had known this lady had violent tendencies I would not have touched her wheel chair.  I knew that was not the way to handle an aggressive patient.  You do not startle them, touch them, crowd them, corner them, raise your voice, or try to control them.  You speak quietly and try to redirect them.

What causes a dementia patient to become aggressive.  According to the National Alzheimer’s Association – Medications, lack of sleep, infections, noise, getting in their space, and several other things.  My brother has all of these problems, his feet and his legs from the knees down are swollen like rocks.  They cannot get him to sleep and they change his medications constantly.  So what happened in the following confrontation is similar with the problem I had with the patient in the wheel chair.

January 25, 2015 a nurse (Alice, name changed) called me from the nursing home.  They told me my brother J.R. had become aggressive and injured an aide.  The aide had confronted J.R. because he was pushing a lady in a wheel chair down the hall.  The patient in the wheel chair was yelling and was quite upset because she did not want to be pushed.  The aide tried to redirect J.R., but that did not work.  The aide then placed herself between the handles on the wheel chair and J.R.  J.R. grabbed the aide’s arm and twisted it behind her back.  Needless to say, he injured her arm in some way.  The aide confronted J.R. just as I had confronted the lady in the wheel chair in December.  She stepped into J.R.’s space and tried to control him physically.  The nursing home has made a report on this issue.

I will not know until tomorrow if they will ask me to place J.R. in another facility or whether they will add more medication.  Nursing home staff members need to be trained in how to deal with aggressive patients.  The stress never seems to totally disappear even when you place your loved one in a care facility.

Fraud Against Those With Dementia

Have you ever known an evil person who has intertwined themselves in your life?  I became caregiver for my brother, with dementia, because just such a person entered his life.  The name of this person and others involved have been changed to protect my brother.

My brother J.R. was officially diagnosed with dementia in 2009.  J.R. began living on our parents property in 1992 to assist them with their lives.  Ann entered J.R.’s life in 1995 when our parents were still alive.  J.R. was a preacher and a locksmith and Ann became his locksmith business partner.  Ann was bookkeeper and secretary, handling all the paperwork for the business.

Things went well for my brother until our parents died.  Dad died in 1999 of a heart attack and Mom died in 2002 with Dementia.  Ann had been employed as a legal assistant by lawyers and judges for years before and during the time she knew J.R.  In 2005 Ann added her name, as half owner, to our parent’s property, which J.R. and I inherited after our parent’s deaths.  I did not know my name had disappeared from deeds and other assets.  I was never allowed to see any files pertaining to my brother’s affairs.  My brother signed, without question, everything Ann asked him to sign.

I lived almost 2,000 miles from J.R. and had no idea what Ann was executing.  I always thought I was intelligent and circumstances such as fraud could not happen in my life. Naive me!

Ann said she had a power-of-attorney over J.R. and his affairs.  She had a typed power-of-attorney document, which was never recorded with the state.  She used that power-of-attorney often and no one questioned its authenticity.

Beginning in 2010 J.R.’s doctor informed Ann not to let J.R. drive an automobile any longer.  Ann continued to let J.R. drive until he had a catastrophic wreck in August of 2012.  Ann was in J.R.’s business truck the day of the wreck.  Ann was flown, in critical condition by helicopter to a hospital 100 miles away and J.R. was taken to a local hospital. J.R. died 3 times and was resuscitated.  They operated and placed a pacemaker in J.R.’s chest.  Standing in my brother’s front yard, Larry (Ann’s son) told me J.R. should not have been resuscitated at the hospital, they had a document to prevent resuscitation.  How nice, I thought.

During the time Ann and J.R. were in the hospital, Ann’s son Charles and friend Ellen, who was a lawyer, began taking personal belongings of J.R.’s from his home. They hid J.R.’s important documents and money in bank security boxes in their names.  I had heard about the wreck from a friend, not Ann, Ellen or Ann’s sons.  My husband and I left immediately to travel to J.R.’s home.

Having Ann in the hospital allowed me to investigate paperwork in J.R.’s office that Ann’s sons had not yet hidden.  Ellen locked J.R.’s office door right in front of us, telling us Ann had assigned only Larry to deal with bills and affairs.  Well, how silly of Ellen, J.R. and my husband were both locksmiths.  Ann is now owner of J.R.’s locksmith business.  Very little money was in co-owned bank accounts, but Ann had three secret bank accounts, in her name only, in three separate banks.  Ann’s son Larry had been added to J.R.’s real estate property, in January 2012, without J.R.’s knowledge.  The whole torrid story revealed itself when I began to investigate.  This old saying crossed my mind, “Oh, what tangled webs we weave, when first we practice to deceive.”

Within 2 weeks, we took my brother, while Ann was in the hospital, and returned to our home.  Ann had yet to acquire about a third of J.R.’s house and property that she had tied up in a Joint Tenant Deed with rights of survivorship.  I immediately acquired a legal, recorded power-of-attorney in the state where J.R. lived and the state where I reside.

Ann had Ellen call us over and over trying to make us bring J.R.back to his home.  Ellen said they were going to press charges of kidnapping against me.  After getting out of the hospital Ann began harassing us constantly.  In the past 2 1/2 years Ann has filed lawsuits and restraining orders against J.R., my husband, and me.  She would call our local police, asking them to come to our house, to see if we were mistreating J.R.  She had police department deputies, in her area, call to scare and harass us.  She wants J.R.’s signature, on his real estate deed, so she can sell his home and land and move on with her life.

There is much more to this story, but writing the entire story in this blog would be impossible.

I cannot afford to sue Ann or live 2,000 miles from home for months to take her to court.  I will never be able to retrieve any of the assets she has stolen from J.R.  Because she failed to acquire all of his property the legal battle to acquire Medicaid to place J.R. in a nursing home was long, exhausting, and expensive for my husband and I.  We were penalized because Ann did not steal every pair of socks J.R. owned.  That’s a joke!  Life is unfair, unjust, and downright frustrating!  Ann and her sons abused J.R., but God has helped me keep him safe at last.  Every person on this earth needs that champion to protect them.  No caregiver needs the added stress of dealing with a thief as they care for a loved one.

Music Soothes The Soul

How many of you have never recognized the importance of Music in your life?  I cannot fathom life where there is no music.  I comprehend the significance music brings to the lives of those with dementia.  It is evident when a person with dementia hears music that it transports them to a state of gaiety and jubilation.

Watch the YouTube video: “Alive Inside Film of Music & Memory Project – Henry’s Story.”  I have viewed this inspiring video, about Henry, numerous times.

My brother J.R. has loved music his entire life, dementia has never dimmed that love.  I would place a disk in the CD player of Kenny G, Andra Bocelli, or an artist I knew J.R. loved and push play.  J.R. would stand in front of the CD player mesmerised, swaying and singing.  He was transformed to a state of exhilaration and bliss.  Music affects me precisely as it does my brother.

I have ask the staff at the nursing home to play music for J.R. and the other residents. When I visit the nursing home I never hear music.  The television, which no one is watching, is constantly on in the dayroom and dining room.  I sometimes think the nursing home staff do not wish to stimulate patients.

Memories

I think of the song Barbra Streisand sang years ago, “Way We Were.”  The first two lines go like this – “Memories light the corners of my mind.  Misty water-colored memories of the way we were.”  This is really a song about lost romantic love, but these lines remind me of the memories I shared with my brother, who is now lost in the world of Dementia.

I have 3 siblings, but the only sibling I had in adult life was my brother J.R. who was 17 months younger than me.  Two of my siblings chose not to be involved in my life or in J.R.’s life when we became adults.

I hear a song my brother loved, I see something my brother loved to do, I think of the things we did as children.  J.R. was a good preacher for many years, one of the best locksmiths in the area where he lived.  Those skills are lost to him now.  My brother had an overpowering love for his Mother.  He was a kind, caring, loving, nice man.  He is one of the favorite patients at the nursing home where he resides, he is still a gentle soul.

We had so many adventures as kids, we use to reminisce about the things we did and the places we had lived.  We were what you would call, “Construction Brats.”  By the time I reached 18 years of age we had lived in 20 different places, in 8 states.  We met so many wonderful people during those years.  We would make friends, cry as we left those friends, and become excited when we arrived at the new town we would call home.

I love my brother, I will always love him even when this dreaded disease of Dementia takes him from this would.  I weep for him now, I pray for him, I miss his humor, I miss him saying, “I  love you Sis.”  He does not know my name anymore or that I am his sister.  I simply miss the person he was, before Dementia, with a sorrow that reaches to the depths of my soul.  My brother has been mistreated by so many people in this world. Despite those cruel people in his life he had Mom when she was alive, he has my family, but most of all he has God and his son Jesus.  He is loved and he is cherished as a human being because of those who love him.  God bless you my dear brother.

Peace at Last

I have dealt with Dementia and sorrow for so long, and even after placing my brother in a nursing home, peace evaded me.  Why you say, because fighting for the rights of your loved one after you place them in a nursing home is exhausting.  Too many drugs, and problems until your loved one gets use to the routine and settles into other surroundings. Within a week my brother had escaped through the screen of a porch.  They had chased him into the woods and caught him.  He has always wandered, always wanted to be on the go at all times.  My brother is very hyper, very nervous, and very hard to handle and contain.  He does not sleep at the nursing home, he cat naps, and stands with his head against the wall and falls asleep standing up.  I have always thought he had ADHD from the time he was a small child.  No amount of drugs can make my brother sleep.  How sad to never be able to rest, because your mind will never stop whirling.

I was sitting on the porch, just 2 days ago, in the sun, looking at the beautiful blue sky and the airplanes trailing across the sky.  I was thinking of my brother and praying to God.  I began to realize I had not sat outside and communed with nature like that for a very long time.  I finally realized I could relax, my brother was in a place where he was being taken care of, I could let go of the 2 1/2 years of stress and anxiety.  I could finally relax, enjoy life, and live the life I had lived before this journey with Dementia began.  A big sigh escaped my lips and I felt that one sigh brought me back to the world of peace and harmony.  What a wonderful feeling to feel Peace.

Dementia – A Different Approach

I probably should have made this the very first blog I ever wrote.  I checked on the internet as I cared for my brother with Dementia, for the farm in the middle of Montana or elsewhere, to place him when the time was right.  What farm you say – the farm I envisioned in my head.  The farm where there were caregivers, no drugs, places to roam, animals to pet, places for Dementia patients to live with dignity.  I never gave my brother drugs, I did not want those drugs to change his mind in any way.  In the Netherlands they have towns built just for Dementia patients.  Somewhat costly, but a dream like place where your loved ones with Dementia can live drug free.  Why they cannot have these towns in other countries, especially the United States, is a mystery to me.

I have come across two fantastic doctors, who are establishing places for Dementia patients to live in dignity.  Look into the websites of  William H. Thomas, M.D., who is founder of “The Eden Alternative.”  Nursing homes without drugs.  Doctor Thomas is in his 50’s and is in the early stages of Dementia himself.  Read the books written by G. Allen Power, M.D., FACP.  I have read one of his books, “Dementia Beyond Drugs.”  Doctor Power serves as an Eden Mentor at St. John’s Home in Rochester, New York, where he has worked since 2000.  He has practiced medicine for over 25 years, the last 19 or so years in long-term care and rehabilitation.  They have over 400 residents in St. John’s Home in New York and they use very little drugs to control those residents.

Doctor Power is a very busy man, he travels the world trying to get people to open their minds to changing the care of patients with Dementia.  I have emailed Doctor Power once and he returned my email in a very short period of time.  He becomes discouraged because of doctors and nursing home staff members will not open their minds to change. God bless Dr. Thomas and Dr. Power for what they are trying to accomplish.  These two wonderful men have inspired me.

I have seen my brother with no drugs and I know how much better he functioned without drugs.  When I finally put him in a nursing home just a short time ago, they drugged him so much, he did not know he was in this world.  I have talked with, argued with, and insisted they lower his drugs.  They have done this somewhat, but not enough.  I contacted an Ombudsman who is suppose to assist the nursing home patient and family with complaints.  The Ombudsman observed my brother at the nursing home once for half an hour, he happened to be alert at the time, so she said all was fine.  I was disappointed with her attitude and her lack of follow-up on my brother’s situation.  I felt the Ombudsman was working for the nursing home, more than for my brother.  People with Dementia are still people, God still loves them, they still understand more than you think.

I have tried to get the nursing home to use music therapy, which I read about on the internet.  This brings Dementia patients alive and makes them happy.  The nursing home staff have not used music therapy.  I played music for my brother constantly when I cared for him.  It is time for those in the medical profession to change.