Caregiver Burnout or Independence?

[fureverywhere]

I'm writing about my daughter but many on this site have probably have similar experience with a spouse, a parent, a close friend...someone you have responsibility for. But we aren't saints. After the person calls you for the fifth time in an hour you get resentful, then guilty being resentful. My daughter is cognitively between six and twelve. I can't change that. But sometimes I need my own time.

I'll park a few blocks from the house after work and read. Even a half hour of quiet and a good book helps a lot. But I still get the guilties when I get impatient with her sometimes. She can chatter for hours on end. About wrestlers, her favorite music, things that happened years ago...regular conversation doesn't compute. I mean I count my blessings. She can read and write...even spell surprisingly well.

She can dress and bathe and feed herself, even cook with supervision. There's many kids on the spectrum that will never even get that far. She can talk your ears off. Some kids never become verbal at all. But it doesn't make it any easier sometimes. But somehow you still do what you're to do. Crap, she might turn out more happy than some of my "normal" kids. Thank you I feel a bit better sharing.

 

[Grumpy Ol' Man]

We're having more difficulties with our granddaughter. At 20 years old, she simply cannot care for herself. The family has searched high and wide for some sort of group home facility that would be an option. She can "test out" of most facilities, showing... on paper... that she is perfectly able to carry on a typical existence. She is finally about to be evicted from her apartment. After having to wade in some months ago with masks and trash bags and clean out the spoiled food and filth she was living in, we hired a cleaning service to come in once/week. They called this past week. They cannot enter the apartment due to the live maggots that have accumulated in spoiled food left around the apartment. At 20 years old, she cannot be forced into a "lock up" facility. And, she seems perfectly happy living "her" life. She has a routine where every day at least one church in town has a meal for the needy. She eats there and gets one warm meal/day. My wife can usually talk her into coming to our home to shower once/week. If she rebels, she may go two weeks.
It's become quite a burden for our daughter and my wife. I just cannot understand the reluctance for our elected representatives to address the mental health issue in our Country. Our returning military and their issues have brought some mental issues more to the forefront. Just hope that if we get a more caring President who can get Congress to move from being obstructionists to governing, we can see some needed advancement in the treating of mental health problems.

 

[Carla]

I can only imagine how hard that is, fur. No, you're not a saint, you're human. Any programs available for her? Maybe you could find a way for you to catch a little break. You shouldn't feel guilty. I helped take care of my Mom, but there were times she drove me a little crazy, I must admit. Vent your frustrations if it helps.

 

[fureverywhere]

Grump, I understand you. Middle daughter needed more treatment than was available and she turned into a needy little beeyatch. Not Special Needs but just stubborn..."Give me a disorder and I will do it". Her sister and I have a whole brochure of information. At 18 I need to seek a court ruling to be in charge of her affairs.

 

[BlondieBoomer]

The unfortunate thing is that after a certain age you have little control, even when they could be a danger to themselves due to their habits and lifestyle. It must be difficult to love them so much, yet not have the control you need to keep them safe, whether that be a group home or some other type of supervised living arrangement. I can't even imagine what you must be going through. You certainly shouldn't feel guilty for sometimes feeling resentful when you need time to yourself. You can only do so much and you've probably gone beyond even that. Something needs to change in the laws dealing with situations like this. I have the utmost respect and sympathy for you.

 

[BlunderWoman]

I have said this for years.. " If your kids are healthy and doing well then you are a rich and fortunate person indeed." I'm sorry I have nothing good to offer you in the way of words Fur and Grumpy. Here's a big hug it's all I have..sorry (((((((((hug)))))))))

 

[Ralphy1]

You are good people so do not beat yourselves up with guilt. The best advice, having been through this with a mentally ill parent, is to take care not to be overwhelmed and take time to maintain yourselves...

 

[mitchezz]

I have been a carer for 32 years. The most important thing that keeps me going is a sense of humour. Life is an out of control practical joke at our expense........you laugh or you cry........the choice is yours. I'm not belittling anyone's struggles but I've come to realise if you can't beat 'em join 'em. The low times pass and at the end of the day our role is voluntary.

 

[fureverywhere]

I agree mitchezz, I have the most loopiest sense of humor you can imagine, if you don't laugh at the absurd, you cry. Finding humor is a life saver

Grumpy, sending you and your grand daughter big hugs and purrs. I guess it depends on area of the country, diagnosis and a bunch of other stuff. If her parent or other relative could perhaps petition the court for control of their daughter, then having another independent evaluation so they had paper documentation? They did that a few years ago with my daughter. I had to take her to Social Security for a formal re-evaluation. You know Social Security wants to double check that a person is still disabled...bastards.
The interviewer talked to her maybe half an hour, tested her on some stuff, and then said we'd be notified by mail. The official consensus? Yes after ten years she is still disabled and qualifies for SSI. Tell me something I don't already know sheeeesh.