Caregiver Burnout

Leon481 · Oct 19, 2010

Some of you may know a little about my situation. I've been taking care of my half-insane, mostly disabled Mom for quite a few years now and as of late it's becoming unbearable. I was looking around online for any possible help I could find and I discovered I'm apparently suffering from what's known as caregiver burnout.

While I'm relieved to know that these feelings of pure hatred and utter despair are normal and to be expected in my situation, I'm not finding a lot of information on how to deal with it. Plenty on how to prevent it, but not much on what to do when you are in the middle of it.

So has anyone experienced this before or maybe known someone who has? I could use all the advice I can get. (I actually spent roughly 4 hours writing a long, drawn out post on another new found help forum about all this.)

I know this isn't the usual kind of advice topic these forums usually get, but I actually respect the people here and thought it was worth a shot at least.

Chip · Oct 19, 2010

Leon,

I don't know about Georgia specifically but in most areas, there are visiting nurses and home health aides that are free or provided by medicaid/medicare and they can specifically provide respite care (which is care to give the main caregivers a break). That won't solve your long-term issue but it might give you some "sanity time."

In the longer term depending on the situation, it would be sensible to look into what other options there are. In most cases, there is some sort of either inpatient care that will be paid for, though if it's paid with medicaid or medicare funds, the places are either in the middle of nowhere or not-so-nice. But at a certain point, you have to have help.

Also, if you contact your local Hospice (even if your mom's not terminal), they can put you in touch with support groups for caregivers. It sounds silly, but just sitting around with others in your same situation can be remarkably healing and give you a huge break. No one who isn't doing, or hasn't done, what you're doing understands just how much of a sacrifice it is. I've been there (with my own mom) so I do understand how stressful it can be.

Leon481 · Oct 19, 2010

We actually have a nurse who comes twice a week, but she's not here for very long and all she really does is monitor some dangerous wounds.

I've looked for resources around here, but we actually are kind of in the middle of nowhere and there's not much available. It's a town with a large population whose services haven't grown properly with the demand, so the system is limited in what it can do. The medical professionals around here are mostly a joke as well. Maybe I've been looking in the wrong places. I don't know.

Also, I've discovered that part of the problem seems to be that no one seems to know what's going on. It doesn't help that I get tounge tied around other people and can never seem to convey the true severity of the situation to anyone who might be willing to help. (I haven't here either. I didn't feel like bringing up the gory details again.) They usually think I'm being overdramatic or begging for money. The fact is, the situation is far worse than they think and I don't need money. What I need is their time or for someone to take a chance on me so that I can get things stabilized.

Mom puts up a good enough face in public where no one realizes that she's an out of control, bi-polar, narcissist. They know about her other health problems, but the real danger is her unstable mental health and failing mind.

The truth is, it's a rather complicated situation that's been deteriorating for a very long time due to the fact that we were without the skills to properly care for her or to even cope with the situation properly. We've been going through hell for years, since my sister was in middle school at least. (She's a freshman in college now, so that should give you an idea of how long this has been going on.)

Maybe I should post my full story on here. I wrote it up in another forum and I'm thinking it might be good to show to people to give them a real grasp of what it's been like, why the situation is the way it is, and why we need help. It might be good to gauge the reaction here to see what other outside reactions might be like if I show it to people.

Would anyone be interested in reading it? It's kind of uncomfortable for be to bring up something so outside the bounds of what's normally found in these forums, so I don't want to bring it up if it's going to make anyone other than me uncomfortable. You know, common courtesy and all that.

Lexington · Oct 19, 2010

"Interested" might not be the right word, but I think it might be a good idea to hear the whole story. Feel free to put a standard disclaimer at the beginning if you think it'll freak some people right out.

Lex

Leon481 · Oct 19, 2010

Lexington said: ↑

"Interested" might not be the right word, but I think it might be a good idea to hear the whole story. Feel free to put a standard disclaimer at the beginning if you think it'll freak some people right out.

Lex
Click to expand...

I doubt it would freak anyone out. It's not that interesting. It's just an explanation of seven or eight years of despair, frustration, weakness, and drama. You know, the kind of thing you might see on a daytime talk show.:dry: This kind of thing that tends to make people very uncomfortable in my experience, so I'm very wary of dropping things like this on people without fair warning and making sure it's alright.

I guess it can't hurt. Like I said, I feel like this explains our situation better than I ever could in person, so I may need to show it to people who may be able to help. I guess it would help out to hear people's reactions to it and maybe tell me what I can do to improve it.

Be aware though, it's long. About five pages on standard Microsoft Word font.

I'll put it up in the post following this one.

---------- Post added 19th Oct 2010 at 02:29 PM ----------

Well here it is. Keep in mind I wrote this on a caregiver help forum at 3 in the morning when I was overtired and overemotional. I desperately needed to vent.

Hi, I'm new here. This is kind of new to me. I've never really talked to anyone about any of this. I'm not really sure where to start. There are 6 or 7 years of frustration to vent. This will be pretty long but please bear with me. It may seem like I'm telling my whole life story, but it's important to tell to really understand my current situation.

I guess I should start at the beginning. I was a really screwed up kid during my high school career. I couldn't deal with people, I was chronically depressed, and I had regular panic attacks. It got so bad I had to drop out of school. For 2 or 3 years I lived like a hermit only dealing with whatever doctor or counselor I had to. At the end of the period, I started to snap out of it and get my life together and go back to school. That's when things went wrong with my Mom.

Her health had never been great. She had been on disability since before I was born, but she still led a full and active life. The doctor had given her some kind of antifungal medicine for her nails. It reacted badly with some other medication she was taking and she was in a bad way. She was generally unresponsive and we found out later that she was hallucinating. We took her to the ER. The doctors had us sit there for three hours then sent her home without examining her. I think they thought she was high.

After a couple of days she started to snap out of it, or so we thought. She became like a different person. She would do nothing but lay in bed and never wanted to leave her room. She was tired all the time and couldn't do much. She seemed to have lost all will and emotion. We talked to the doctor, but he said she was just recovering from the shock to her system. Boy was he wrong.

Things started to get worse. We started to notice she was very forgetful and would get confused very easily. She seemed to lack emotions and common sense, and she seemed to act on instinct rather than thinking things through. My sister was in middle school, so I ended up having to spend all my time watching out for my mom so my sister didn't suffer. Because of the drain on my time and energy, I ended up having to leave school again. Here I was, a still inexperienced, barely sane kid, with no income and who couldn't even drive, taking care of a young girl and a now half insane woman.

Things started to get worse as time went on. Mom would get more and more forgetful and confused, and completely started neglecting things like the bills (which she could still do at first). I didn't know this and ended up learning about household finances the hard way when service after service was about to be cut off. She could still somewhat function in her daily life, she just had no real judgment skills and had to be supervised.

It went on like this for three years, getting worse all the time, more problems than I can count cropping up because she insisted on doing things on her own and then screwed them up royally because she got confused or couldn't remember.

All the while this was happening, the doctors did nothing no matter how much we tried to explain things. I was suffering, my sister was suffering, and we were barely holding it together working as a team. I retreated further back into myself and my sister's grades started to suffer and she grew to hate the world.

Through all this, no one knew anything was wrong. Mom kept up a good public face. Everyone assumed my sister was just depressed and over-emotional and I was a lazy, screwed up, good-for-nothing who couldn't grow up. Neither of us was properly equipped to explain exactly what was going on. Neither of us had the life experience to know how to deal with all this or where to go for help, or even if there was help available. We were also terrified that child services might take my sister away, she would have to leave the life she knew and we'd be split up. As bad as things seemed, neither of us was willing to deal with that. We thought things couldn't get any worse. Again we were so wrong.

My mom developed an infection in her foot from a wound she was too stubborn to get treated. She was in the hospital for a month, all the while, the doctors seemed to do nothing. It was so bad in that hospital. There we were in a hospital ICU and I, an untrained caregiver, had to teach a trained nurse how to wrap a bandage around a wound. Seepage from her poorly dressed wound got between her toes and caused the tissue to rot. I had to show the nurse how to properly bandage the wound so that wouldn't happen.
Honestly, the month she was in the hospital and my sister and I were fending for ourselves was the happiest we'd been in years, It was such a relief to be free of having to take care of her. That didn't last long.

They realized she had no circulation in her leg and drugs weren't helping. They sent her to another hospital where they immediately decided to amputate her toe, which meant complete bed rest until it healed with a drainage device strapped to her foot and occasional nursing care.

This put even more strain on us. I rarely got any sleep and my sister started failing all her classes. To make matters worse, every time we turned our back, Mom had unhooked the drainage machine and walked downstairs, delaying her recovery even further. On top of which, it was discovered she had diabetes, which further slowed her healing.

With everything slowing things down, she was attached to that pump for a full year before she was cleared to walk. My sister and I were so busy trying to care for her needs while keeping her in bed, that we barely had time to think. We spent that entire year basically numb and unthinking.

Even with all the stress, when she finally recovered from the amputation, we longed for the days when she was still stuck in bed. When she was on bed rest, she couldn't cause much trouble besides delaying her own healing. Once she was out of bed, things got worse.

She decided she was going to take over everything she was doing before.
She decided to do all the grocery shopping, which meant buying nothing but sugar (I don't need to tell you what it did for her diabetes) and junk with little actual food.
She decided to start taking care of the bills, which meant taking them before we could see them and never paying them.
She decided it was okay to drive (which the doctors and nurses both said she couldn't) which usually meant being all over the road and several small fender benders.
And she managed all this with limited mobility and a still not completely healed foot. It was only this year the hole finally fully healed.

Naturally, we realized we couldn't let her run out of control anymore. We decided we couldn't let her have access to money or let her drive. It became a constant power struggle with an out of control woman. We couldn't prove she was not in her right mind, so legally, there was nothing we could do. There was no getting through to her. In order to keep things stable we regularly had to resort to lying, hiding her stuff, sneaking around, and trickery. We were so happy when the car died due to battery problems and we had no money to fix it. (She had backed into a tree, shattered the back window, and damaged the door. It wouldn’t close properly so the battery died.) It made things so much simpler. She didn't like asking people for rides (outside of going to church) so we started handling things again.

Then, about six months before my sister graduated, some good samaritan decided to fix the car. We hated his kindness so much. How exactly do you explain that you don't want your main mode of transportation fixed because your mom is out of control? It started all over again, only this time, we weren't the only ones sneaking around. We'd occasionally find large chunks of the budget gone with no explanation. And you know what she spent it all on? Bubble Gum. She had somehow become addicted to bubble gum. She would eat a BUCKETFULL (I'm not exaggerating) in a couple of days and then would do whatever she had to in order to get more including lying and sneaking around. I can't tell you how that affected her diabetes. (Thanks to her, my sister and I now hate bubble gum with an intense passion. The noise, smell, taste, even the word.)

She would do this so much that we even ran out of money to pay the bills. This happened for several months in a row. To top off her out of control behavior, she still had problems with confusion and forgetfulness, she still acted only on instinct (the main problem), and she still seemed to have no emotions, apparently including a conscience.

This became a bigger problem when my sister graduated and we lost her social security check, vastly reducing our budget. We were already incredibly behind on the bills and losing the extra money made it extremely taxing. After all this, my sister was so desperate to get away, she went off to a catholic college in Kentucky with no phone service.

So here I am now, living alone with an out of control woman with diabetes she doesn't take care of, a wound in her other big toe just like the one that made her lose the big toe on the other foot, and who also needs carparal tunnel surgery for her wrists, doctors who won't acknowledge the main problem, a house that's literally falling apart around us and which has been destroyed by our two cats on top of normal wear, every major appliance broken (yes I do mean every, we wash clothes in the sink because we can't afford a laundry mat), and almost no money because we have to spend over half our budget every month to keep the power from being shut off. She doesn’t bathe or change her clothes unless forced and it’s a struggle to get her to contribute in any way, despite the fact that she is physically capable.

We've been half starving for months and I've been constantly sick. (sinusitis apparently on top of the stress and not eating well) She's been using this time to run rampant. This month things finally started to seem stable, until she got her hands on the money and bankrupted us for the month. We've survived on charity and visits to the local food bank. Then I find out she spent the last $10 dollars I managed to save for an emergency ON BUBBLEGUM. FREAKING BUBBLEGUM. AGAIN. The worst part is she doesn't even understand that what she did was wrong or why I was angry.

I seriously can't take this anymore. It was bearable when my sister was around because she helped shoulder the burden, I had someone to vent to who understood what I was going through, and I could take comfort in the fact that taking care of Mom made my sis's life easier. Now that she gone I just don't see the point anymore.

It sounds horrible, but I hate the woman. She can drown herself in Bubble Gum for all I care at this point. My sister feels the same way. I know it's because of whatever her currently STILL undiagnosed illness is, but she's still unbearable.

The problem comes from the fact that if something happens to her, we lose the house. This would leave me homeless, my sister homeless for about 4 months of the year, we'd lose everything that was ever important to us in our lives, and neither of us could take the loss of our cats.

I want to get a job to support myself so that she can enter a nursing home and we could keep the house, however, I was still recovering from severe emotional problems when all this started and since then caring for my family has taken over my life. I've never worked. I have absolutely no life experience. I've shut myself off from the community. To top it all off, I was never able to learn how to drive due to lack of a teacher. All this has made finding a job to support myself basically impossible. I have no contacts, no experience, and no references. No one is willing to take a chance on a 25 year old man who quit school and has never worked in a typical job.

I feel trapped. I have nowhere to go for help that I'm aware of and I've been shouldering it all alone for a long time. We have a nurse that comes to check on her twice a week, but all she can really do is change her bandages. I'm so sick all the time and as a result I am not able to properly care for Mom, the cats, the house, or myself. I’m scared to go to sleep most nights because I never know what she’ll do while I’m not watching her.

Any person I try to talk to about mom's problems just gives pity looks and seems to be at a loss for words, maybe they will say how sorry they are, but offer no real help. Mom interferes every time she gets thinks I'm about to try to get outside help, like when I tried to talk to my Aunt when she was visiting us with my grandmother. She constantly kept us from talking. (I think she's embarrassed and doesn't want to look weak). Whenever she hears me talking about finding someone to take care of her, she tries desperate things to try to fix our problems herself and prove that she's still capable, which never get fully followed through and usually cause more problems than it fixes.

No one I've talked to seems to be able to point me in the right direction. Even normally capable, successful people who should have the knowledge in these areas seem baffled as to what I should do.

Anyway, that's my story. I've fallen into a state of deep depression and despair, worse than it's ever been in my life. I don't know how to cope anymore. I found this forum in a desperate search for anything that could help with this current situation. I was hoping someone around here can point me in the right direction of what I should do or how to cope with a seemingly hopeless situation.

Thanks to anyone who actually read this for putting up with my long rant. It's much appreciated.

Leon
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Eleanor Rigby · Oct 19, 2010

Leon,

I read all your posts, and I can't tell you how sorry I am about this situation with your mother.
I can't imagine what it must be like to be in your position.
I am not leaving in the US, I don't know how things work there, but in France, I would advise you to turn to the social services. And one way or another, you should try to have your mother diagnosed by a psychiatrist as irresponsible, so that you can take decisions for her at least about money.

I know this is not helping much, but I wanted to let you know that I care about what's going on with you. If you ever need someone to vent to, you're welcome to PM me anytime. I know it's not much, but I always can listen.

Take care and hold on (*hug*) Cécile

Leon481 · Oct 19, 2010

Eleanor Rigby said: ↑

Leon,

I read all your posts, and I can't tell you how sorry I am about this situation with your mother.
I can't imagine what it must be like to be in your position.
I am not leaving in the US, I don't know how things work there, but in France, I would advise you to turn to the social services. And one way or another, you should try to have your mother diagnosed by a psychiatrist as irresponsible, so that you can take decisions for her at least about money.
Click to expand...

There actually is quite a simple solution for her care. There's a nursing home nearby that she stayed in for a while for rehab after her amputation. They did more for her there in a few days than doctors had done for years. It was like they restored her soul. For a couple of weeks we had our Mom back. She became a bright, caring, happy person. She cried, hugged us, and apoligized for all the pain she had caused. After she can home, her change lasted about a week, then suddenly, without warning, she was back to being horrible again.

We've wanted to get her back in ever since. Medicaid will cover it, but they take her social security check to pay for the rest. That's all the money we live on and without it, we'd lose the house and everything in it. I'd be homeless, my sister would be homeless during the school's off season, and we'd lose our cats who have been the only good things in our life for a long time and are too precious to lose.

Eleanor Rigby said: ↑

I know this is not helping much, but I wanted to let you know that I care about what's going on with you. If you ever need someone to vent to, you're welcome to PM me anytime. I know it's not much, but I always can listen.

Take care and hold on (*hug*) Cécile
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I may take you up on your offer to talk if I ever get around to applying for full membership.

Actually, this is a big help. Just the fact that an outsider has heard the whole story and has not just dismissed it as my weakness or me being over-dramatic is an amazing confidence booster. Thank you for that. I got similar responses on the other forum and it's helped me realize something.

Up until now, I've contributed my situation to my own weakness and nothing more. It felt like, if I was stronger, I'd be able to take care of her better and get my life together as well. I guess I thought, she's sick so she deserves help, but I'm not sick, just weak, so I don't deserve help. Like no one would want to help me and that I should find a way to handle it on my own.

The process of writing all this out and hearing such positive responses from several people has made me realize that I've been through a hell of my own and I deserve help to get out of it, like maybe I'm not quite as weak as I thought and I've done well enough coming this far with no help.

I'm starting to get a little more clarity on the situation. If I can explain my situation clearly and prove that I need help, there may actually be things I can do.

The main problem right now is money for a decent place to stay. If I can find that, Mom's care will fall into place as well. If it's just money, there may actually be answers. I need to do some research and I may need help from someone in my community who knows about these matters.

Also, any ideas on how I can make that monster essay any better? It seems like it may become my main platform for getting across our situation to others. I need it to be as clear as possible if I'm going to get any help.

Caregiver Burnout

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