Can anyone tell me how they handle the frustration of caring for a parent with severe Alzheimer's? It's been 13 years, I thought I knew.

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My mom was diagnosed 13 years ago, She still drove for acouple of years, The progression was slow, I thought I was prepared for the severe stage and I am handling it but does anyone have advice?

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Thanks for the kind thoughts...I know the patience and caring you have displayed in your responses will continue...
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Hi Daniel... God bless you for taking care of your mom. I know how it feels all those 13 years might seem to you as wasted years. I feel the same way too. And I am longer in this caregiving than you. I'm into my 19th year already and still now sign of an end to the long tunnel. I often read that Alzheimer's may last up to 20 years. Unless that advice is right or something very lethal will happen to my mom, I think she will beat the 20 years that is often mentioned by doctors. I read one time here from one of our fellow caregivers here who rant & vent that her aunt or mom lasted actually 30 years!!!!

I don't wanna imagine what another 11 years will do to me. As I said, I'm into my 19th year already. My mom is full time with me, and I am a single parent, with a 12 year old daughter under my care. My daughter is also feeling the stress. She can see it everyday. There are moments we both don't want to come home when we get the chance for few hours on weekends or when money & time & health permits. Because I don't have the wherewithal and resources or government assistance that is mentioned by some caregivers here, what I do is to play deaf blind mute to some of the irritations. Yes my house is one big toilet now. There is luxury in ignoring the sights & smell. But the thing is, we can't suddenly have visitors on our doorstep. Until we do an emergency cleaning.

There's no easy solution. One thing I started doing is to pay in installment for the next 3 1/2 years my mom's cremation/funeral plan out of her meager social security pension. This is the only way I can reduce the tremendous expenses and liability this whole situation has caused me. I am already paying for it by losing my work at the city hall 19 months ago. Anyway, I want to somehow be prepared in case she pass away, at least there's a funeral plan to ease the worries at the end of the tunnel. Take care Daniel. Welcome to this site. You're not alone!
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Hi Daniel... God bless you for taking care of your mom. I know how it feels all those 13 years might seem to you as wasted years. I feel the same way too. And I am longer in this caregiving than you. I'm into my 19th year already and still now sign of an end to the long tunnel. I often read that Alzheimer's may last up to 20 years. Unless that advice is right or something very lethal will happen to my mom, I think she will beat the 20 years that is often mentioned by doctors. I read one time here from one of our fellow caregivers here who rant & vent that her aunt or mom lasted actually 30 years!!!!

I don't wanna imagine what another 11 years will do to me. As I said, I'm into my 19th year already. My mom is full time with me, and I am a single parent, with a 12 year old daughter under my care. My daughter is also feeling the stress. She can see it everyday. There are moments we both don't want to come home when we get the chance for few hours on weekends or when money & time & health permits. Because I don't have the wherewithal and resources or government assistance that is mentioned by some caregivers here, what I do is to play deaf blind mute to some of the irritations. Yes my house is one big toilet now. There is luxury in ignoring the sights & smell. But the thing is, we can't suddenly have visitors on our doorstep. Until we do an emergency cleaning.

There's no easy solution. One thing I started doing is to pay in installment for the next 3 1/2 years my mom's cremation/funeral plan out of her meager social security pension. This is the only way I can reduce the tremendous expenses and liability this whole situation has caused me. I am already paying for it by losing my work at the city hall 19 months ago. Anyway, I want to somehow be prepared in case she pass away, at least there's a funeral plan to ease the worries at the end of the tunnel. Take care Daniel. Welcome to this site. You're not alone!
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Daniel, You have my admiration - 13 years; I've been at it for 4 now having retired to care for her is '08. I can't think about much beyond the current as my mom is at the point, we don't leave her alone. You didn't mention how much care you are providing so its hard to know just how to advise you. But here goes; if you are providing 24/7 - be sure to give yourself a regular break. Know that you can't do it all. If you have siblings, let them help. Know that you can't do it all. Also, realize that we all get frustrated with the process. About 5 months ago, I started going to yoga, twice a week and that has helped me a lot; I get the sitter in and that is just my "me" time. We are fortunate to have a local sitter who comes as we need her, whether it be a few hours or a few weeks. Also found that hospice is available to her as "failure to thrive". They provide an aid for bath assistance and a bit of "housekeeping" (changing sheets, tidying bathroom, etc) 3 x's a week and a nurse 1 x a week.
Also, this is a great site to come to for information or just to vent. Lots of caring folks here.
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My heart goes out to you. Give yourself credit for handling it.

I hope that you are getting away from the situation regularly and often. There is no substitute for respite care to keep you going in the face of severe stress.
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