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Just Want to Talk | Last Active: Sep 12 6:29pm | Replies (4356)Comment receiving replies
Sue, I think you understand where I'm coming from.
But, I'm tired. It feels like I've been overseeing someone's care for so long, Mom for more than 12 years w/altzheimers and Rob with dystonia now 19 years. Bob several weeks in ICU. I'm ready to quit helping But, you know that's nuts since Rob needs me. I can't stop, plus, I am worried how he'll survive after I'm not able to help. He's alone.
Since the Klonopin withdrawal, his brain isn't ok. He's a brilliant person, constant reader-can't understand much of what he reads now, excellent writer-vocabulary is very limited now, very logical-can't follow another person's speech nor think clearly/logically. Ability to have a logical, clear conversation is gone.
Now, I'm not feeling sad or sorry for myself, Sue. I'm explaining why I'm tired, really tired. I've missed out on a lot of living and been working through that loss the last few years, to get rid of resentment and anger. To learn acceptance. Of self and life.
The last few months, things have been extra challenging w/Rob and you've seen me deteriorate. That's the pattern. That's our roller-coaster. I never learned how to handle this, so have been having a ball with cognitive thinking and all the 'new to me' concepts. Fun, interesting, challenging and plain tough to apply personally.
You and your daughters are very much alike even tho so different. There's a lot of their mother in them that leads them to be helpers, or you wouldn't be chatting with me on this group, or the other groups with folks you help.
Back to bed. I woke up and began more of this thinking. You know that helped me get back to sleep, eh? Nope. So, good night, my friend. Bless you and yours. Elizabeth
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Hi Elizabeth -
I feel your pain, especially in trying to deal with your son and his many difficult issues. Not meaning to add to your burden, but I have a question for you, one which came up as I watch my brother try to figure it out with regard to a disabled grandson, for whom he has been guardian since his teens.
Are there resources in your city, county or state for him? If so, perhaps now is the time to look into them, even as a stopgap to give you a break with some scheduled respite care, housecleaning, shopping, etc.
What is the plan for Rob when you are no longer able to help? It would be dreadful if he were to "fall through the cracks" in society after all the years you have spent helping him.
I think you have said he is not under your guardianship, but sometimes there are resources for "at risk" independent or vulnerable adults. Someone who can no longer read and understand, or engage in a complex conversation is certainly a candidate for guardianship or conservatorship because he cannot make rational decisions about selfcare.
If he receives SSI/SSDI maybe they can point you to local help. Perhaps you can plead for an independent guardian/conservator to deflect his inevitable anger from you, and provide for continuity when you can no longer do everything for him.
There is a positive side to this - when his paperwork, etc are all in the hands of a third party, your time with him can focus on quality of life - outings when he is able, flowers on his patio, etc. And you have peace of mind knowing if you have a medical need or even an emergency, Rob is not abandoned.
Sorry if I stepped on toes here, but you need to get some relief, and some time to focus on your own physical and mental well-being.
My thoughts are with you. Hugs from Minnesota!
Sue