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Being the health care taker of a loved one

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Old 09-06-2016, 05:09 AM   #1
Join Date: May 2015
Location: New York State
Posts: 84
lintek55 HB User
Being the health care taker of a loved one

Dear other caretakers,
I've heard through out my life how difficult it is emotionally and physically hard it is to be the care taker of our loved one but I never really knew until it happened to me.
maybe things happen to us for reasons so we can help others when they too go thru what we went through?
Of course the system doesn't make it any easier for the family. especially when it comes down to the insurance part and all the estate fairs, the persons bills that keep coming in, etc.
let alone having to put the loved one in a nursing home is hard enough because I feel like I'm failing my sister by doing this because I promised before she became ill suddenly with a terminal illness that I promised I would take care of her if anything happened to her. she never married, worked hard all her life to succeed in a very stressful corporate job. I'm proud of her accomplishements and I always looked up to her as my role model being she is older than me. she's old enough to be my mom.. most people we'd meet in public wld even ask if I was her daughter. I feel like her daughter.

she worked extra years and waited to retire. she just retired half a yr ago. she's 73 yrs old. she was supposed to go and live in Florida with a best and dear friend she's known all her life because her best friend is dying and has approx. 3 yrs to live. so she started cleaning out her house, but came down with sudden vertigo. so she went to an ENT and had all the tests done and he said she had vestibular neuritis. A virus that attacked the nerved in the inner ear. she went thru P.T and it worked for a short while but she went down hill again.
I took her to a neuro Dr. next who performed every battery of test you can think of.. still, no answer. we thought that was good being there was no malignancy in the brain or spinal cord.
She kept falling down in her house, outside her house while bending down just to get the news paper. so my brother and I had to make sure either one of us or both were there to take care of her in her home. she wouldn't listen to use the walker. first it was a cane, onto a walker and then we were going to get a wheel chair for her. but she wound up in hospt. from a fall.

the neuro on staff there, whom I was going to call as a second opinion neuro happened to be there taking care of her and gave us the devastating diagnosis of " Prions Disease". which just don't know which form yet.
she had to have a 2nd spinal tap within a matter of two weeks because 1st sample that was sent to an outside lab said it was too old to be tested.

The Dr took us in the hallway and told us he THINKS it's prion's being he's had a patient with it 14 yrs ago and is familiar with the signs. he's HOPING he's wrong. he suggested she be put in a safer environement rather than her home because she keeps trying to get up to walk and can't.

I just put her in the best one I knew was good. now I'm not so sure they are good. they are understaffed, which means the patients are screaming for help in the place just to use the bathroom. I can't stand seeing the sister I once knew in such a weakened condition where she doesn't even really know where she is. This all happened within 2 months time.
it's happening quickly, so we have to move quickly. I want to take her back home where she can be more comfortable there. with this disease, noises and sudden noises afflict the patient. They get sudden dementian and they hallucinate. they can become violent to the nurses where as they never had a vicious bone in her body. she thinks she's on a ship.

sometimes she has clarity but a second next she cld be hallucinating again. it's the strangest, most frightful illness I"ve ever seen.
it's an extremely rare one too. One in a thousand get it in the country.
the Dr. said he wonders what on earth she got into.
supposebly there's an incubation period but they don't know enough about the disease yet.
I feel so out of body and strange as if I'm in a living night mare. the only peace of mind I get is when I'm asleep.. as soon as my eyes open in bed, my mind starts thinking of what's going on again.
you can't run from it. even though I"d like to. I thought I'd be prepared for illness, but one never is, I thought I have dealt with the ending of life means and not to be afraid, etc...
I never want to go through this again, but yet our brother who's only 3 yrs apart from our sister has heart damage and needs valve surgery. those two were the bobbsie twins. he can't even go see her in the nursing home like this and wants to remember her the way she used to be. he feels he's going to die within 2 months after her death. he doesn't look well and is getting weaker ever day. he wants me to take care of his burial too.
I just needed to get all this out.... writing feels good. maybe keeping a personal journal wld help others too.. if anyone has any suggestions on care taking, please give them to me.. I need advice desperately. sorry for the length of this.

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movielover40 (09-06-2016)
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Old 09-06-2016, 08:22 AM   #2
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Re: Being the health care taker of a loved one

Praying for your sister.

Good luck to both of you...

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Old 11-11-2016, 03:28 AM   #3
Join Date: May 2015
Location: New York State
Posts: 84
lintek55 HB User
Re: Being the health care taker of a loved one

thank you Movielover40,
Prayer is very powerful and needed in this world. I believe very highly in it.
I didn't see your reply till just today.
My sister has passed away movielover4o. On Oct.15, 2016.
We transferred my sister from the nursing home to a hospital that's for terminal patients and she went peacefully in her sleep after being there just a few weeks. it was quick. I am having a hard time dealing with the after math of emotions I'm feeling. It was like a living nightmare of seeing what she went thru. I keep getting flash backs of what she went through and I can't find myself yet. I feel lost. I know this is part of life and that it's inevitable we are all going to leave this shell of a body one day, but I STILL can't get over that she's gone. I don't know how to deal with the way I feel? there is no magical pill you can take and all the talking in the world isn't going to make the fact she's gone any easier. she was my BEST friend all my life and I'm 56 yrs old. we didn't have a memorial for her yet being she didn't want a formal burial and wake and funeral. I have a necklace that the funeral home offers in a catalog for your loved ones' ashes to be put in and you can have them near your heart.. so I do. every day. I really hope there is a next place we go to and that we get to see our loved ones there like so many people who've said who went thru near death experiences.
thank you again Movielover4o.. best wishes to you and good health

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