Where are the Laws that Protect the Unpaid Family Caregivers?
Three years ago I was a healthy 48 yr old single, childless, employed woman with her own apartment. I was struggling some with alcohol and depression after being diagnosed with Macular Degeneration at the age of 45. I had to leave a career in jewelry after 15years because of my vision disease.
I started working as a family service counselor in the Funeral/Cemetery business and I became depressed and started ALOT. I put myself in and paid for a month long rehab. The week I got out my Dad's went into the hospital.
I stayed at my parents because my mother is legally blind (macular degeneration as well) to help out. I kept my apartment until my lease was up but wasn't living there. My Dad, now 84 was admitted into the hospital every month that year and his health was declining rapidly (congestive heart failure and bladder cancer survivor, kidney disease but I didn't know it at the time).
I went back to work few months later but wasn't comfortable with my dad driving, etc. He was starting to get very confused about his medication, etc. I forgot to mention I am one of five children, all but one lives within a five mile radius of my parents house. Oh yes, my father is a retired Southern Baptist Minister, you will understand later why this is a key element in my story.
One day my dad was at doctors appointment which he drove to with my mother accompany him. He was sent to the hospital by ambulance and my blind mother was stuck there by herself and having difficulty finding a restroom. I was the only one that would help her out. I was physically the furthest one away at the time. I had to leave work without my bosses approval. I didn't get in trouble at work, they saw the writing on the wall before I did. I cut back my hours at work until I had to cut back to nothing.
I took over my dads medication, Doctors appointments, and diet. I got his heart functioning at a normal capacity and raised his kidney function. I was loved by all, from the doctors to my siblings. Then it happened, my mother, now 79 (then 77) had a prolapse bladder and bowel surgery and hysterectomy all at the same time. This surgery took place a couple after my Dad was diagnosed with Alzheimer's.
It has been 2 years and four months since I have had a day off. One year and five months ago, a doctor (and i say a doctor not my doctor, I don't have insurance anymore) at the county told me I need time off and instructed a friend of the family, who I took to the second appointment on purpose, to get my family to step in and give me consistent time off.
WELL, you would have thought that I had asked for their first born, and I only asked for one day off. Apparently not being to have children has made me stupid and lazy, because everything i hear starts off with "Well, it's a good thing you couldn't have children because you don't know what tired is"...and so on. And is just gets worse from there.
Last year I brought a total of $20,000 into my household by applying for and receiving Aid and Attendance through the Veterans Administration. I put in a claim for monthly pension and also a
claim for back pension. I parents didn't qualify for state IHSS so I started searching for some money to offset the expense of me being there.
Check it out, if your fathers are Vets and they are being taken care at home they might for up to $1600 a month in pension. I am still trying to get his raised because of my moms blindness. AND I AM STILL NOT BEING PAID.
My siblings do NOTHING. And now they won't speak to me. My moms lies to them about me and that is a whole other chapter in its self. I do everything from plumbing to electrical to paying bills. Cooking grocery shopping, Medications --my dad is on 14 medications. My mom doesn't go to any of his appointments, or bath him or help me with his catheter. And boy that was a nightmare until I found the belly bag. that he can wear for a week straight. One day it took me 5 hours to find his night catheter bag that my dad hung outside on a plant stand.
So when did I hit the wall? Well believe it or not, I actually enjoy being a caregiver, I don't have time or the desire to drink because I am responsible for someone and needed. And I like working with Alzheimer's patients. I applied and qualify for some grants which would pay for a huge portion of a 10 month LVN/LPN course which offers evening classes.
Bottom line is this...I don't get to go. My siblings have refused to help and they have the financial to do anything. My oldest sister and her husband bought a Porsche just to keep at their beach house and she can't come up with a way to help out. I made a deal with my mother, I wouldn't go to school for a least one year or ask for a salary and she would change the will and leave me the house.
Enrollment is up and she has changed her mind about leaving me the house.. I am ticked off. Last week she ended up with a bleeding diverticulitis. She thought she had diarrhea and I almost went into shock. I thought she was going to bleed do death. So I called my second oldest sister, The power of attorney for health care, who has done nothing, and wont give up the power of attorney. She lives exactly 2 1/2 miles, drive way to drive way (I used to be an avid runner). No one came over or came to the hospital or nothing. I had to recruit neighbors.
I believe I have a lack potassium and was not feeling well myself and they don't care.
So is so much more to this terrible situation as I am sure there with everyone else who is in a similar predicament.
I have tried everything to solve this. I mean everything. WE NEED TO ADVOCATE FOR LAWS TO PROTECT US.
I think I am going die before I get help. I am sad, sick, lonely and bullied. AND I AM NOT TAKING IT ANYMORE. I am thinking talking to my local government officials but I don't know a lot about politics.
I want everyone who reads this to not think that all Christians act like my siblings. WE were not raised to treat one another the way my parents and myself are being treated. They are wrong and they know it and so does God.