I have written of the struggles my brother and I are having with his health and with a hostile management company. Last night when I was doing a couple domestic things like running the dishwasher and making sure he was covered up since he goes to bed early I was struck by the thought "what changed?" What turned an apartment I loved into a nightmare. I was able to throw my imagination into its fullest and decorate the place the way I wanted. Everyone loves the way I decorated. Yet my ideal place to live has gradually turned into a nightmare. What changed? I became a caregiver.
I have lived in this apartment since June 2011. I was never late on the rent. I was a good quiet neighbor. I was an ideal tenant. Something changed a couple of years ago when they rented the upstairs apartment to a family that fought, stomped around, and made an excessive amount of noise. I had to go up there one night at 11:30 p.m. and bang on their door and tell them to cut it out. I had a heart stress test scheduled for the next morning and needed to sleep.
When Reid came out in the fall of 2013 he had rented an apartment in the complex and I was going to set it up for him. That plan fell by the wayside when health crisis after health crisis hit and it became apparent to everyone that he would never be able to live on his own. I cleaned out his apartment, got things to the Rescue Mission and stored the rest of his things in a storage locker. We got out of his lease when Social Services told management that he had to be let out of the lease because he was too disabled to be by himself.
The last year and a half has been a nightmare. It started with him collapsing in January 2014 outside the theater after seeing The Hobbit. He was hospitalized for six days. He was 104 pounds at the time. We had nurses and therapists etc. up the yin yang. We had frequent calls to 911 with massive drops in blood sugar. I will never forget March when he was doing a bowl cleanse in preparation to a colonoscopy. Unfortunately no one stopped to consider what that would do to his blood sugar. He collapsed and went into grand mal seizures. I had a eureka moment and went and grabbed the Karo syrup to try and get his blood sugar up. It was scary.
I am beginning to know 911 personal on a first name basis. They recognize the decorations. They are able to help keep me calm.
It has been a 6 months of multiple surgeries. On 12/09/2014 he went in for cataract surgery on his left eye. On 02/03/2015 he had cataract surgery on his right eye. On March 11th his podiatrist sent him to wound care because of ulcers on his left foot that were not healing. They in turn sent him to Heart and Vascular. On April 1st they did the exploratory surgery. The Doctor found major blockage in his arteries and scheduled a bypass. On April 14th they did an angioplasty on one artery and put a stent in the other. We still were not sure he was going to be able to keep all of his leg or his foot. On April 28th his blood sugar dropped so low I had to call paramedics. We got it back up okay. On May 2nd it dropped again and this time he went into seizures and was hospitalized. On May 3rd they amputated his fourth and fifth toe.
I have talked about my problems with the apartment management and Reid's health in a series of diaries on Daily Kos.
Immediate Help Needed
Help Evicted with an Ill Disabled Brother
Make the World Go Away -- I Can't Handle It Any More
Still in Hospital and Other Updates
I Miss My Sissy's Care: He's Home
Asking for Positive Energy and or Prayers
Good News We Have a New Home
My Brother Reid is in the Hospital
This Should be Interesting
This is caregiving round two for me. I was our mother's caregiver until her death on May 26, 2010. What struck me last night was realizing this isn't the first time I've felt hostility while being a caregiver. Several of the women I worked with in Indiana were notorious for making catty comments about me and being a caregiver for my Mom. They couldn't fathom that someone actually volunteered to do that. I overheard more than once that I should put her in a home. She was in a home. It was her home and she died in her own bed.
The hostility from management started when Reid gave up the apartment he never lived in to permanently live with me. They resented my telling them they had to quiet down the upstairs neighbor because it was destroying my brother's sleep. They resented my asking for a ramp to help get his wheelchair from the car up to the sidewalk. They resented my being a caregiver to him.
I have always believed that we are here on Earth to help others. That is the way I live my life. It is only natural that I became a caregiver. It is in my nature. It is one of the hardest jobs in the world. I can understand that many people don't have the temperament to handle the job. I have to wonder if the hostility stems from the fact that they are angry with themselves because they could never do the job and resent someone who can do it twice.
I certainly never expected that the senior years of my life were going to be spent taking care of family members. I never expected my proud Mom to ask me to come stay with her. My brother's noncompliance meant that I had to step in if he were to live. His Doctor flat out told him he would be dead if not for me.
What changed? I became a caregiver. Management was forced to spend a couple of dollars to build a shoddy ramp that is already starting to crack. They had to enforce their own noise ordnance. They had to deal with someone who studied up on disability laws to help her brother. Their attitude reflects the National attitude you see in the Republican party. We must not bother the ones with money in order to take care of those who need help.
It is a sad state of affairs when people who dedicate their lives to helping others have to face hostility for doing the right thing. Caregiving is a tough job and caregivers should be supported and not hindered in doing their job. It wasn't how I envisioned my senior years to be but I wouldn't change it for anything. My Mom needed me and my brother will die without me. His doctor told me, "I don't think you realize what an angel you are." I think the people who are hostile to my caregiving better take a good look. There are devil horns holding up that halo. I will do whatever I have to do to make sure my brother's rights as a disabled person are being met.
Reid when he first came out.
Reid now.