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I have been the caregiver to my handicapped parents since 1996

Feb 11, 2008 - 0 comments

I have been the caregiver to my handicapped parents since 1996.  My father had a stroke due to a doctor’s negligence causing him to be partially paralyzed on one side, leaving him unable to speak and also creating severe brain damage.  While he was in the physical therapy department  my mother who had osteoporosis fell in a hailstorm breaking her hip and her arm.  She had a hip replacement and was able to walk with a walker.  For several years my Father was able to walk and be self sufficient with my help until he fell and broke his hip.  Due to his size I was unable to take care of him and with a heavy heart put him in a nursing home.  He went into the nursing home June 2004.  Because my mother still is in the community she was able to file for spousal impoverishment through Social Security, allowing her to keep his income.  December 29, 2004 only a few months after my father going to the nursing home my mother fell and broke her knee on the same leg with the hip replacement because a pipe broke in our apartment complex flooding her bedroom.  Because of her age and medical history they did not do surgery on her, the Doctor just put her in a full leg cast.  Her leg never fully healed but she still was able to get around with my assistance and with a wheelchair.  At the time of Katrina we were evacuated off the roof of our building Thursday afternoon and then went to the causeway where we were bused to the airport and stayed in the triage unit 36 hours trying to get a flight out of New Orleans.  During the evacuation she re injured her knee and also dislocated her shoulder while being put on a stretcher to an Army medic plane.  We were sent to Houston where we lived until December 1st.    My father was in a nursing home uptown and because he could not speak and had no identification on him he was separated from the other patients, it took my family 10 days to find him in a hospital in Alexandria.

During that time hurricane Rita was a threat to the Houston area. So my mother and I evacuated to Memphis.  It took me eight hours to get to the Louisiana border from Houston that day.  We spent the night in the nursing home that my father was sent to in Alexandria where he stayed for several months.  My mother from the trauma and stress from both hurricanes became very weak and fragile.  A year to the day that she broke her knee she broke her femur on the same leg.  Again no surgery took place just a cast.  

My father relocated to a nursing home in the area in November of 2005.  While my mother was receiving physical therapy in June at the same nursing home she developed pneumonia and was rushed to the hospital where after only 2 days she aspirated on some medicine and had to be incubated, later having to receive a tracheotomy.  Because of her weakened condition it took several months for her to be weaned off of the ventilator.  Due to the lack of nursing homes that are ventilator equipped since Katrina she was placed in Jefferson Healthcare on Jefferson Highway where she received substandard care. After only being there for two weeks she developed severe foot drop and was septic in her trach site, also developing MSRA in her catheter.  She was rushed to the hospital were later after antibiotics and therapy she was able to come back home off of the ventilator.

I have been the caregiver, only working a few days a week for 6 hours a day while hiring someone sit with her.  In the last year she has been totally bed ridden because of the foot drop.  Medicare will only pay for an aide to come for an hour three times a week and will not pay for a full time sitter.  Even though my mother was bedridden she still had her right frame of mind and was able to be left alone for a short time.  She has a cell phone, regular phone and ambulance monitor.  I was paying someone $800 a month for me to work, that is almost half of my paycheck monthly, but along with my father’s income was enough to pay the rent, electricity and essentials.  

August 2007 my mother went in the hospital with an infection and with antibiotics got stronger. We agreed while she was in the hospital to have surgery to correct the problems with her feet.  Four days after the surgery she aspirated again and had to be incubated and was rushed to ICU.  After several days she became septic in her old trach site which has been closed for almost a year.  The doctors said that she had an infection that lay dormant all this time and when the tube was forced down her throat aggravated the infection causing it to become active again.  Because of this infection she has taken so many antibiotics that she developed a yeast infection in her lungs and is not able to be weaned off of the ventilator this time.  After six weeks of having the tube in her mouth to breath the family agree to have the doctors perform a tracheotomy again.  There is still a possibility that she can be weaned off of the vent and come home with just the trach.  With her foot surgery she will not have to bedridden with proper braces she can be transferred out of the bed.

We are afraid of her going to another nursing home and spending months on a ventilator there when she could come home with 24 hour medical help.  I am an only child and I am in the process of being trained for ventilator procedures, I do have some help from her previous caretaker who has a full-time job now and is only available part time.  My mother is unable to receive Medicaid as her secondary health plan and Medicare would not pay for a nurse or a vent trained aide to come to the house.  My father’s income that she receives is preventing her from receiving Medicaid.  I was told by a social worker that the only way my mother can receive any benefits from the government is if she would divorce my father.  They have been married for 58 years, a very loving and giving marriage.  Even though they have been a part of because my dad’s illness and him being in a nursing home,  they were able to spend some time together the thought of them being divorced so we could afford my mother’s medical bills, breaks my heart and is impossible for me to consider.

My father served in the Navy during World War II, in the Marine Corps in Korea and is also a retired police sergeant.  I do not understand how the elderly become victims of such atrocity that there is no help for them.  

Growing up my parents were members of Optimist Club  for 25 years where I saw the good in people and generosity of helping others.  My mother made sure that every Christmas needy children would have toys and at Thanksgiving families would have food for their table.  In the winter families would have warm cloths and blankets.  My parents have always been very generous people never asking anything in return.  I am asking for them now any assistance you may offer to help my parents live the rest of their lives in a stress free and healthy environment. After a productive hard-working life it is a shame that people end up in the situation.  I am searching for an organization which might have the funding for this and would appreciate any assistance you can offer.  


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