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dcarpenter

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Nov 30, 2016
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Loved one DX
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11/2015
Country
US
State
CA
City
Citrus Heights
My mom was diagnosed with ALS in November of 2015. In October of this year we did the ALS walk here in Sacramento. Mom was able to go with the help of a scooter. But since then she has gone downhill. We have had her in respite care twice. This last time we wanted to be able to leave her there while we did the paperwork and found her a more permanent place. However she was booted out. We got a call from the facility the night before her time was up, and we were told that she could no longer be there. She shoved a nurse. We told them because they couldn't giver her one of her medications (Halidol) that they would be in trouble.

Well we picked her up the day before Thanksgiving and brought her home. On Saturday she managed to get a hold of a butter knife and tried to kill herself, she then told her hospice nurse that if they had a gun it give it to her so she could kill herself. They decided to put her on constant care with more meds. I told them that they had to be kidding, more pills. She can barely swallow. I had to cut it up in fours and convince her to take it.

That was Saturday night, well today is now Tuesday night and I was over there and my dad said that the nurse told him that her blood pressure is now rising, due to her not taking any of her other meds, and her heart is working way to hard. She hasn't eaten for almost 4 days and isn't drinking either. Hospice has told us to give her the morphine and Ativan every 2 hours to keep her comfortable. She hasn't even been really awake for the past 2 days.

She has spiked a fever now and I have been told by the nurse that she now has stage 3 kidney failure. When she told us last Thanksgiving in 2015 that she had this horrible disease, we thought maybe would get a few years with her, not a year. I don't know how to handle all of this and my dad is really having a hard time with this. He doesn't want to be with her by himself. I have missed so much work and have spent so many nights over there with him and her, and I have hardly slept very well this past week. I jump every time my phone rings. My employer is ok with me missing work, but I feel so guilty about it.
 
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lgelb

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Nov 5, 2009
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11,063
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D,

I am sorry to hear about your mom. Don't worry about work -- be with your mom and dad as it sounds like she will not be around that long. Even if she does not seem alert, try to convey with words, music, scents, your presence and holding her hand, that you and your dad are at peace and she can be, too. This is the time that you act as if; it is your last and best gift to her. Work will be there when you get back.

Best,
Laurie
 
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