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ShellyRenee

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Good afternoon, time for an update on mom. Things seem to be going down hill FAST now. The rash is still unexplained, better but now it's pealing like a sunburn now. Her tube site is STILL putting out the yuck. The antibiotic & yeast infection medication didn't do any good. Now we are cleaning daily and putting on powder Nistatin, thats been 2 days. This one is new: She has Edema from her elbows to her wrist. Her feet have been this way for about a month now, recently a little worse. Mom takes medication for low blood pressure and lately that has been running in the area of 82/64 and 78/48. One hospice nurse feels thats why she has the blurred vision and feeling dizzy. Another one feels it's because she is dehydrated. We keep trying to do all we can but WHY CAN'T SOMEONE HELP? This is so darn frustrating. She is having spells of being incoherant (sp). On Thursday she scared the living gageebees out of me and my daughter, oh and dad froze. She had been sleeping in a reclyner for about an hour when my daughter (19 yr old) asked why is Gma "spacing out"? I went over to talk to her and she was like NOT IN THERE. For about 10 mins I tried waking her but she was responseless. I patted her hands, legs and face but nothing helped. I called Hospice to tell them I thought we were losing her. They had just been out for a visit. Karissa (my daughter) said "mom lets put her oxygen on her". When we turned on the machine, which makes a loud high pitching noise that didn't "wake" her but as soon as I put the oxygen on she took a couple fast deep breaths and woke up. I asked her if she knew what just happen and she didn't. STRANGE! SCAREY!
In the last week she has lost a great deal of strength. So much so that she can no longer be left unattended and she needs to be seat belted in.

Today I took the day off and it is driving me crazy not seeing her. I've already called dad 4 times. I can't help but feel bad, I am so afraid she is gonna pass away and I wont be there. Is that wrong of me to want to be there when she goes to a better place? Oh how I wish she would let me know her feelings. This is tearing at my heart.

Moms primary doctor is going to make a home visit on Monday evening. Maybe she can shine some light or tell us what is really happening to mom. I don't know the signs of death and Hospice will not tell us how long they think she will be with us, not even an estimate. I think if we knew THIS IS IT then we would be able to except it easier. Now we are hoping she is just going through a spell and she will pull out of it. When she was diagnosed with ALS we were told that the average person will live 18 mo.s to 3 yrs., it's been 20 mo.s. We know many people live longer than this time frame. From the condition mom is in right now I feel she could go any minute.

I must go. I apologize for rambling on. Like many others I'm lost, confused and scared. This is not about why me but why her? To all I wish you a good night and a better tomorrow.

Shelly
 

emjoi

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There is no chance of taking her to a hospital?
It sounds like she need full time observation, not just occasional visits by a doc.
 

Pearl

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You could take her off the blood pressure medicine. It might be prolonging a natural course of events. If the blood pressure drops below a certain point, the kidneys are likely to fail and nature will run it's course. Your primary concern is the comfort of your mom and hospice should be able to help with that - whatever it takes to make her comfortable/sleep/rest is a good thing. I don't mean to be blunt (or state the obvious), but sometimes family needs to hear it one more time: she won't get better from this disease - her comfort and your support is of primary importance.

Be good to yourself.
 

Al

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PALS
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Hi Shelly. I'm not sure if you've seen this link but it's about approaching death (sorry to be blunt) and explains the process and gives you insight on what to expect. It is put out by Hospice and is very well written. Take a look when you are ready. AL.
http://www.hospicenet.org/html/preparing_for.html
 

CindyM

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Hi Shelly- I am sorry you and your family are going through such a bad time right now. I don't remember if you said Hospice comes in to see your Mom but they are a great support for end-of-life issues. For some families, the clergy provides this role. I hope you find a source for support and comfort during this difficult time! Regards, Cindy
 

saska

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Lost a loved one
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Colorado
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Lakewood
Hi Shelly,

Two things: 1) You did not ramble on, so absolutely no need to apologize! 2) No, it is not at all wrong for you to want to be there when your mom dies. Oftentimes, though, the person dying may have other ideas. I've known of people who have felt they did not want their loved ones to have to 'see that' so they died at a time when they were alone. Conversely, I've known people who have hung on until a certain someone could be there. Whatever course your mom takes, and whether or not it is of her choosing, please rest assured you are doing a splendid job of caring for and loving her, and she knows that. You're in my prayers. Sharon
 
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