preactive dying

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mysisterskeeper

Active member
Joined
Sep 14, 2012
Messages
44
Reason
Loved one DX
Diagnosis
00/2000
Country
OH
State
ohio
City
columbus
I hope this is not the phase we are in. I am scared yet encouraged. I am nervous yet dedicated to my sisters walk. The past 4 days have been rough but sometimes she still comes out of the dioxide drunkeness. We are here again. The day started so much better after another fu#ked up night and here we are again. Thats ok sis, i am here. Be back forum as I think it will be another long night.
 
Thinking of you. Sending you a hug for courage. Kim
 
You are a good sister. Just be there for your sister and talk about good times, about your love as sisters. Hold her hand. Thinking of you. Yasmin.
 
Thanks - taking a much needed break - the nurse is here - don't trust any of them to be with her in the midst of a down moment - havent had identifiable sleep since wednesday night and that was intermittent. I am officially sleep drunk. Plan on sleeping on the couch in her room tonight. Not happy about the fact my sis is deciding to take all her night meds which include the mirtazapine for sleep since she slips into these lethargic stages and the mirtazipine knocks her out to help with insomnia - don't think imma sleep much. Glad for now she can have some moments of coming out of it all and interact. I see the changes though. Its progression slows and speeds and slips and slides and leaves and comes back wtf is that.
 
Sis, Yasmin gave wonderful advice. Sitting with your sister, holding her hand and talking of good times is comforting for both of you. I will be thinking of you both and sending prayers,
 
I hope this is not the phase we are in. I am scared yet encouraged. I am nervous yet dedicated to my sisters walk. The past 4 days have been rough but sometimes she still comes out of the dioxide drunkeness. We are here again. The day started so much better after another fu#ked up night and here we are again. Thats ok sis, i am here. Be back forum as I think it will be another long night.

just downed a 5 hour energy because she wanted all her night meds which include the mirtazipine for sleep - i can dig it - i would rather be knocked out than that lethargic sh$t! But now I need to be awake - told her I was her keeper and to get over it. If I need a power nap I will take one, but I am here to be a part of the team not sit on the bench.
 
long night... This apnea breathing is rough on her definitely but it causes me concern too. It makes me realize how much I need to use my own cpap. I have a godsis who is on the nurse agency team third shift and we had words because i had to reiterate some boundaries. I told her she needed to understand this was my sister and I was going to be by her side anytime I felt or she expressed she needed me and she was intruding on my process. She had the nerve to tell me I was messing with her client - Boundaries. I told her she is crossing lines into my process with my sister and sister trumps client all day so play her role. I am seriously strong in my passion about my sister and her battle with als. DO NOT INTERRUPT OUR WALK. Figure out how to keep your opinions of what we are doing to yourself. If my support is to close for my sister right now she can still tel me and I know her enough to be able to see her pull away or withdraw which is normal and we can still communicate about it in a two sided way. I was hot under the collar and functioning on no sleep. mannnnnnn I tell ya.
 
thinking of you and praying for strength and peace...
 
thank you all for your prayers - hospice confirmed what I knew - it is preactive dying. I am so tired. slept for a few hours today. about to give her a manacure. Gonna have some fun until she crashes again.
 
hey sis, i live near you. if you need something pm me and i'll give u my #. mary pat
 
Thinking of you and praying for a peaceful night.
 
Hey everyone - my sis had her usual waking state today after going up and down all morning. She chose to sleep sitting up tonight. I have gotten some rest. I have been notifying family to come and see her and judge for themselves how often they want to keep coming and I am no longer responsible until the next phase I feel to let them know. If they choose not to visit its not my problem. They are missing out not me.
 
thinking of you and hope today was a good day.
 
she did have a better day physically, but man o man that tongue does not stop waggin - though the speech is harder and harder to understand she has the smartest comments. I told her to just tell me she needs a break from me instead of smashing my feelings. Yesterday she did just that.
 
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