Monday, July 10, 2017

Getting things off my chest.

I live in Georgia which is one the United States "third world" states; resources are limited. This is why I am the caregiver to four people. I have no choice. I could not stand what would happen if I walked away.

My developmentally delayed brother could live in a group home. My mother could live in personal care home. But ---- They enjoy the comforts of living in a home, having a pet, their own room, television and bathroom. Plus, they help me. My brother helps me with some work. My mother helps in spending quality time with him and my sisters. I would visit them daily and it is easier for them to live in my home to visit with them.

Queen Charlotte, formerly known as Checkers, she was originally named Grace. She doesn't like her children and will treat them badly if they fraternize with her owner. But Charlotte takes care of her owner with undying devotion. 

I am amazed at people who will just tell me how I can make care giving so much easier. Many of these same people will step in my shoes one day. At that point, they will hear "crickets" when they ask for real help. They will not be consoled that you can be put in jail for abandoning a handicapped person. No one is going to help you nor are they letting you off the hook.

Now some remarks from people older than me make sense. They had taken care of a parent.

The statement that makes me mad is "You get a lot of money from the government." Like heck I don't.

My dad left my mom well taken care of. Sharing my home, she is relieved of many bills and able to live "higher on the hog". She would enjoy assisted living. However, I have handicapped siblings. Although my mother is unable to do physical work, she is still super mom to these individuals and a great companion to me.

That said, you have to face doing the dirty work. I don't do it unless I have to. But you do have to tell people their limitations. Sometimes they have to tell me my limitations. Family will tell you what other people will be too polite to say.

One thing you learn with mentally disabled individuals, there are predators.

This person is not a predator. I've got to tell my sister's therapist we focus on living a content life and accepting ourselves as we are at 55. The therapist is about 25. You do the math. I don't know what is being discussed. Frankly, I don't care. My sister gets creative at times which is more due to her disability and loneliness. This is one on one attention for one hour a month which my sister normally enjoys.

My sister gets $525 a month from social security. I give her $250 for spending money. The rest I put in the grocery money. She gets medicare in that she has about $6000 in a thrift plan that disqualifies her from medicaid. Medicaid is their preferred source. Public mental health care is superior to private. Private frames their care around insurance coverage. You cannot get it across to them that you will take a second mortgage to get the care they need.

I am grateful for her Social Security benefit and medicare. I'm incredibly grateful.  My siblings, cousins and I have worked and paid taxes. We certainly aren't eating steaks and caviar with her money.

With the nuttiness in Washington, she can stay on medicare. Medicaid is tightly controlled by Georgia's budget. They have been cutting social service and school budgets by approximately 5 percent every year for the past 14 years. Only certain doctors take medicaid due to state restrictions.

 I feel a vise constantly tightening about my sister mental health care. I put up with a great deal of humiliation. I put Uncle Tom to shame yes ma'aming and yes siring where my sister gets mental health care. They keep cutting funds. One day, my family may live as beggars. It is expensive to be mentally ill.

I hate the Halloween laugh. It's real. It's having your sister open a door and cuss imaginary people for about 15 minutes. This happened as she was getting on medication. Before my sister moved in with me, her private practice psychiatrist took her off her medication. When my sister had a problem with the new medication, well my sister had become a bad patient. She should take the medicine. The fact that no real plan was in place to evaluate whether the new drug was the problem or not created a lot of grief and loss for my sister. The medicine was the problem.

Like many schizophrenics, it was not her. It is the world that is a problem. (Sometimes I feel that too.) Long story short, she lost her job and was arrested for disorderly conduct about two years later. The judge told me to get guardianship which I did. Two years without medication created havoc with her reason. It cost me about $1500 to get guardianship.

With appropriate medication, she has made strides in the 8 years she has lived with me. She is content. There is a little dog who is a lifesaver. Why is family different than the wonderful staff at a personal care home? It is someone who will have a conversation with her. Not those "how are you" depth of conversation that I call "gee gaw" talk. No depth, no real interaction occurs. Plus, she cannot afford the cost to live in a personal care home. Remember, it is $525 a month.

For my sister who has had the stroke. It's saying no you cannot move back into your home. You are unable to shower or toilet without assistance. And even when you get disability, it would be a stretch for it to pay for a full time caregiving situation. I am hoping she might be rehabilitated to living independently.  A meaningful life is my hope for her. Her recovery is going well.

How do people get help who live on the margins of society.

A homeless man was hit by a car and killed about two weeks ago in Macon, GA. The family in Ohio were in grief. They had hunted for their schizophrenic relative. Apparently, the people in Macon liked this man and took up money for his final expenses. The family was heartbroken to be taking back ashes versus the family member who disappeared years ago.

Not everyone has the finances or health to do what I do. My sister could have just disappeared 8 years ago. The day I got the call that she was in jail, I was searching for her. She had disappeared two weeks earlier.

I will not be able to do this forever. But I am doing it now. What I do now pays nothing. But it does pay in quality of life. I have never known anyone to live better by running away from problems. We all got problems. My next big goal is to get my affairs in order so that what I have can finance them to live a decent life. My developmentally delayed brother does have a safety net. It's my sisters and myself I am concerned about.

For my friends, I want you to know how small that dog I have in the fight for healthcare. I wasn't born to be a liberal. I wasn't raised to be a liberal. I wasn't inclined to be liberal. I did not work long hours most of my life to be a liberal. I resent the heck out of being called a liberal. But if that is the group of people who will side with me. I'm honored to stand with them.

I live in Georgia where they have cut taxes and defunded  mental healthcare and education. (I still pay 6 percent of my income on taxes, I don't know who got the break for sure.) Obamacare is not perfect by any means. But it is better than nothing or less. So I don't care what your politics are, you best keep up with these new healthcare bills. It affects so many people.

Of course, I could pack everyone up and move to a state with resources which I have known people to do. Georgia is my home. I'm descended from the original settlers.  But that is all baloney. It takes everything I got to keep the house going and people taken care of. I couldn't move if my life depended on it. I don't get my chores done as it is. Plus Georgia is who I am.

I don't want people to feel sorry for me or my family. We all got troubles in this world. I just want people to know why I look at the world the way I do. You might not have a dog in the fight. I hope you never do.

You may never become a caregiver or be the reason for someone becoming an unpaid caregiver. I read of a woman who died in her van that she lived in. She was in Washington state at the time. She was 86. They were looking for a home for her dog. Barbara Woolworth, the Woolworth heir, died with $3000 in her checking account.

And my brother gets $261 a month from social security. My mother uses the money to pay his medicine co-pays.

I have a dream for my little piece of property. It's to develop a place for people like my sister to live. It is still only a dream and may remain that. I'm religious in that I believe God opens and closes doors for a reason. I need to put some concrete in that dream if it will happen. At the moment, I've got a full plate.

In the meantime, take some time to advocate for responsible health care.  If you live in a "have" state, remember there are "have not" states. Politics should not be a decision maker. Be sure to tell your lawmaker that. The your side versus my side will be a death sentence for those that don't have access to healthcare. Promises are not the same thing as what is written as law. Whatever law is written, there will be surprises in it's interpretations.

Healthcare is like all men are born equal. People don't understand the definition. Access to healthcare and the availability of good healthcare are two different things. Call different doctor offices and ask if they accept patients without insurance. There are only a few that do.

All people are not born the same. But we are all born to have the same rights as the next person. I learned the difference in fifth grade. I will not be out protesting. But if someone with a wheelchair needs me to push them into a legislator's office to plead their case. I will.


  1. You are such a blessing to your family.

    1. Thank you Alex. However, anyone who cares for someone else can be in this position. The people I feel the most sympathy for are parents of sick children. That really puts a hole in my heart.

  2. Thank you for what you do. I provided a lot of care for my alcoholic mother both before and after her stroke. I didn't live with her because I needed time away. And still feel a level of guilt about that. And I am so very grateful that we have public health care. It isn't perfect by any means, but it is there. And my partner would certainly be dead without it, and I would probably be on the streets after trying to fund the care he needed.

    1. I would never feel guilty for not living with alcoholism. It is a disease that destroys the sufferer and the people around them. I am sorry your mother had the disease. It is devastating. I had never been around strokes until my sister had one. You were good to assist your mother.
      I'm glad you have public health care. Health is a blessing we all take for granted until we have an illness.

  3. Being a care giver can be a bit (lot) draining so make sure you do allow time for yourself. You got a lot on your shoulders so make sure you keep yourself healthy the best you can. Statistically its been reported care givers potentially can live shorter lives because they care for others and ignore their own health needs. My daughter in her high school years was severely majorly depressed with tons of suicidal ideations. Being her care giver, I totally understood the need to keep her safe but resources were not available for the family, just the individual and I burnt out (which is what I told one of her counselors I would do after she turned 18 because it was always the emphasis on her, not thinking the impact on those responsible for her care and well being). Sadly, but the best thing we did was after she tried suicide after she turned 28, we said she couldn't come back and live at home (her brother was 15 at the time). That finally got the state to realize "oh, she really is as "bad" as her parents have been saying in terms of needing help and she finally started getting the help she needed. Conversely, hubby's parents specifically wrote in their advance directives/living will that they wanted to remain in their own home in their final days and to utilize all resources to allow them to continue to be able to. Sadly, they were so afraid someone would steal what they had that they wouldn't allow healthcare providers in (and hubby and brother couldn't meet all their needs), so even though financially they could live at home with the right help, they ended up in assisted living, which they hated. You are doing a good thing with how you are caring for others. Just remember to care for yourself.


    1. betty is right. I hope you have support for yourself. And respite.

    2. Thank you Betty.

      Ironically, Arizona is one of the states with better services. I'm not surprised they were not able to evaluate the situation. Mental health care is poor in regards to the sufferer and to the caregiver. They want to ignore the guardianship I have over my sister and use her unwise choices.

      I understand your husband's situation. Some of my problem being loaded with so many people is my mother.

      The purpose of the post was to get people to be aware they need to not fall for this. We are going to reduce the government's revenue and somehow this will fund better healthcare support in this country. Georgia has been destroying what progress they have made with education and mental health care. I hate for the rest of the country to follow suit. It leads to so much misery.

  4. You sure have a lot on your plate, but then many a time we just have to do what we have to do. I'm sure your family appreciates it all. We've sure had our family issues, but pushing through is the way to be. Although one has to look after themselves from time to time too.

    1. One thing that makes it easier for me is that my family is supportive of me. I could not do it otherwise. I wrote this to get people to read about all these healthcare law changes and advocate for themselves. So many are making choices on political slogans and really do not understand these changes are going to be difficult on anyone with health problems or the elderly.

  5. When I heard of healthcare reform I was shirking who it would benefit.So many families are in similar situations, it is hard to dissolve your relationships. the tough one is what would happen should you not be there.

    1. I would not walk away. I've been looking at homes that are large enough but in older areas. I'm not there financially. But, my home is a resource to keep us all going.

      It is the changes to the healthcare laws that I wrote this for. We are doing good. I have been doing this since my father passed in 2000. We're just getting older and needs are more acute. My sister with mental illness is who these laws will hurt. The rest of us have good insurance. Or at least I hope we do.

  6. I've never had to be a caregiver to adults although I've known others who have, and in my opinion there's a very special place in Heaven reserved for them, and for you. I found this post very interesting and revealing. I don't know what's going to happen with healthcare. Some have really been hurt by the changes brought by Obamacare, others like yourself seem to be in favor of it. For those like my husband and myself on Medicare, it's cost us a whole lot more, so I can't say I'm one who's in favor of it. But who knows what will happen next.

    God bless you for the many sacrifices you are making for your family.

    1. For my household, we pay about $1000 a month for health insurance from different sources. But it is still a lot cheaper than no insurance. Fortunately, I have never had to use my insurance for much. But one week at Emory University Hospital for my sister was 95,000 dollars. Her federal insurance covered it and much more. They actually did extra for my sister. I just want people to look at what is being decided. They may be like me and rarely need insurance.

    2. Wow Ann. You are a hero. I feel for you.
      MY step-daughter gets $860 a month in State Disability. She has everything she needs and then some compliments of the state of California. She could not get any help while living in Washington State. She is also on Medi-Cal. It really helps and we are fortunate, that she was able to qualify.

      Blessings to you and your family.


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