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Old 08-15-2013, 09:51 AM   #1
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Kade446 HB User
You Probably See a Lot of This

Hello--I'm new to this forum.

I apologize in advance, but I just need to vent a little to people who understand (for a change). I'm turning 62 this year and I've been a caregiver since 1970. I was a single mom of a son with Asperger's Syndrome, although no one knew what was wrong with him back in those days. He wasn't even diagnosed until he was 32 because Aperger's was an unknown syndrome until only very recently. Raising him was a challenge because everyone from my parents to teachers to friends made sure to blame me for his behavior and lack of social skills, which is ironic because I'm a highly social person, with a close circle of friends. I raised him alone (his father died when I was only 18 and our son was only 2 weeks old), working full time and putting myself through school. I did well, though. He turned out to be a loving, intelligent adult, although he still has all the earmarks of advanced Asperger's.

In 1992 my father got cancer and I dropped my career as a classical composer and conductor to take care of him in a city 1200 miles from my home while my mother continued working. That was long and emotionally draining and, after he died, I moved out to restart my life with my son, who cannot live on his own, at the age of 49. Less than a year later my mother had a stroke and came to live with me. Besides the ongoing issues with my son, the stroke left my mother difficult and sometimes verbally abusive. By this time my career was over, due to the large gap created when I took care of my dad.

After my mother died in 2004, I was finally free, except for the care of my son, but by then my own health began to fail. I have Hashimoto's Thyroiditis and no health care insurance. I take care of myself via affordable alternative medicine, meditation, diet, and etc., and I also take Synthroid.

I'm still dealing with my son's condition, which has proven to be progressive. He's now 43 and I'm, as I said, about to turn 62, and I'm just plain burnt out. No, burnt out doesn't even begin to describe it. Between the Hashimoto's and 43 years of caregiving, I'm a walking zombie who can't get the health care I need. I try to stay positive though, and creative. This works fine until mornings like today, when my son has a meltdown involving other family members, and I have to take care of damage control (I remarried in 2001 and took on three wonderful teens and am very happy in that regard). But it's not easy, as you all well know.

On days like today I feel like my life has been stolen from me and that I will soon die unfulfilled and disappointed. I don't regret taking care of my family--I'm family oriented and I get a lot of emotional and spiritual support from my spouse. The kids are on their own now. I have nothing but gratitude for the goodness that is in my life, but sometimes I get a bit down and I have to confess that I'm beginning to feel resentment at having to take care of my son until I drop into my grave. I have a good life, but I have to ask, when is it my turn? When is someone going to take care of me? Will I ever hear my son say "Thank you", or "I love you"? Probably not--his Asperger's is very close to being full-blown autism. It just gets hard sometimes.

I know. Gripe, gripe, gripe, right? Thanks for listening. It really helps.

Last edited by Administrator; 08-15-2013 at 08:34 PM.

 
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Old 11-07-2013, 04:47 PM   #2
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Location: SW, OH, USA
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Sandy Caregiver HB UserSandy Caregiver HB UserSandy Caregiver HB UserSandy Caregiver HB User
Re: You Probably See a Lot of This

You really have been 'on call' all your life. I completely understand the tiredness you feel and wondering where your life went. At one point, you really won't be here, what will happen to him then? It would seem he will eventually end up in a group home of some kind? Think about this, there's nothing wrong with trying to get him in one now, so you can see that it is working out and iron out any problems - and actually have a little of your own life left for you. It's not wrong to be a caregiver to yourself, you know.

 
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Old 01-15-2014, 10:25 PM   #3
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Re: You Probably See a Lot of This

You will always know you've done all you could. I can understand the drain on yourself and nobody seeming to understand just how devastated you can feel like not one drop of energy left. You should look for a group home, you would be surprised how he might like it as I know someone in a similar position who worried for a long time about it. After one week her son was a different person and loved his new friends. Probably because they understand each other in their own way. I'm also turning 62 this year and I've had to retire because of health problems but I am tied down caring for a sick husband who clings to me and depends on me to do everything for him. He is still working but when he comes in the door he's an invalid! I spend my whole time keeping him from being depressed and try to convince him he isn't 'that sick' anymore. He is slowly being more optimistic so I hope he will climb out of his misery soon.

 
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