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.

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by: Anonymous

Hi fellow unpaid caregivers,

My dad passed away 8/16/13. My mom broke her hip and was released from rehab day before my dad funeral. Well my biggest fear became reality.

When my dad was given only two weeks to live... was the first time my sisters helped. AND they took over and isolated me from my mother. I wasn't involved in funeral arrangements (former employer of mine) and was and still is completely isolated from the family.

My sister picked my mom from the hospital and kept away from me. I received an eviction notice 3 weeks ago. The past two months I have lived off of $200. I don't have any food money or supporters.

I will be homeless soon.

The bottom line is as a caregiver, paid or unpaid,is obligated by law to not leave elders in a uncared for situation.

In other words ..you cant quit without a replacement. I will end this the way I started with the big question? WHERE ARE THE LAWS TO PROTECT THE UNPAID FAMILY CAREGIVER????

Tired, sad and devastated...
Owner of original post...

Your Situation Sounds too Familiar.
by: Anonymous

I was like you with a few exceptions. I was a single mom with a teenage special needs son.

I had been laid off from work, I had worked in the same profession, retail management for nearly 30 years. At the time, my mother was living close by us in a senior apartment complex. She was very active for her age, was able to drive and care for herself completely.

Then in June of 2008, all of that changed. Her health started to diminish, she couldn't drive anymore, her decision, thank goodness. I was now taking care of two households, hers and mine.

Eventually within the next year it was necessary for her to move in with me. I knew that I needed to make a career change and decided that I was going to do something that I had dreamed about doing for over 20 years. So I enrolled in nursing school at the age of 50. It was very challenging to say the least, after not being in school for nearly 30 years, my mind just didn't work the same when it came to studying.

I had to drop out for one term when my mom became ill and needed full time care. I started back up three months later, but again her level of care changed again. I was able to use money from savings to bring someone in to care for her so I could finish school.

But those funds were used up too quickly. I finished school in Oct. graduated with honors but now I am caring for her full time. She has been turned down for Medical twice and again recently, which I am appealing yet again. So she is not able to qualify for IHSS.

I have two older siblings that do not live close by. She is not able to be left alone now, I monitor all of her medications etc. She will be 88 years old next month. I am usually a very patient, sympathetic person.

I know she feels bad that I have to give up living my life to care for her, but I just keep telling her that it is payback time.

I feel myself becoming very resentful and angry, which is not who I am normally. I fight everyday to keep things a float financially. I am unable to work because I have to take care of her and I can't afford to bring someone in to watch her while I work.

I am constantly having to listen to friends and family lecturing me on how there should be some type of government program out there to help us. Really?

Trust me, I am a pretty resourceful person, I always try to work smarter not harder. I will keep fighting to get her the help she needs, I will make sure her medications that she needs that aren't covered by Medicare are paid for, I will make sure her quality of life is not compromised.

Even if it means I have to go without medical insurance or a day off. What else can I do?

Just checking in...
by: Anonymous

How are you doing sister? What's happening? Thinking about you, ok. Don't give up! You are not alone.

Vacation Necessary
by: Anonymous

To the original writer:

I also feel for you. These situations are awful - no one truly understands until they are in the position. I agree that there ought to be laws for caregivers - rights for us. it is going to be a HUGE issue in the coming decades. It already is.

I truly believe that you need a break, and you should allow yourself to have one. It might seem impossible, I know, but what if you told your family in writing - each individually - that you are planning on going away for a few days so they're going to have to make arrangements to care for your parents?

They'll HAVE to step up, or if they don't, your parents will see how valuable you are to them. Honestly you cannot keep going like this.

Good luck, and big hugs and thanks to you for all that you do.

by: Annonymous

I feel for you. I am a christian also and would like to encourage you to take this family matter to your heavenly father in prayer and ask him for people who can help and wisdom to deal with your siblings.

Also, the income coming into the home must be yours to use as you see fit. Your sister needs to be disqualified due to lack of performance. Your parents should not allow you to be burdened by your siblings in this way.

My Father had determined early, that since my brother wasn't there for us, and was just waiting for him to die (like everybody else), he went to his lawyer and 'sold' me his house at a fraction of the cost/value. And had a deed prepared in my name, so when he dies, no one can make any claim to it. And so it was. BTW, I did not have to pay him any money for the property, he just made it look as if I did on paper. He said, "it's mine, and I can do with it what I want" referring to himself.

Funny how when you get old or sick, greedy family members show more interest in what you have than in you. Pray and ask God to open your Father's eyes and your mother's too. Love you my sister.

Mother is not of Sound Mind...
by: Anonymous

My mother is not of sound mind most of the time and she has been like this this I child. Very mentally and now physically abusive. My mom is the type that refuses to believe she has a problem. Everyone else does according to my mother.

I wanted to thank you for your response. I have reached the end of my rope. I am so tired mentally etc. today. It's all I can do to take care of my parents. I just sit and stare in space or forget what I am doing.

I have no legal right to do anything except handle his pension. I am his legal custodian with the VA.

Caregivers should not have to ask for help. It should be offered.

Oh woe is me...lol

by: Anonymous

You need to copy out what you have written here and give a copy to each of your siblings. Perhaps there are things they don't know. You said your mom had lied to them...what else has she told them? Maybe she had been telling them that it was her taking care of you? You don't know.

Communication is the key. If, giving this letter does nothing, then see a lawyer (do you have legal aid?). Make sure you know your rights. Is your mother of sound mind? Promises without a signature are worth nothing. Only you can take care of you.

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