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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
This has been a whirlwind of sorts. No time for sleep means taunting my epilepsy. Lets not mention my own health. I gotta figure out how to take care of us both. I try to remember my medicine everyday, but I never forget hers. So many false starts (what I call it when I think she is dying right then), but I am happy for each false one because the real mccoy will be here soon enough. I got some stuff off my chest today. Usually I keep my mouth shut. I haven't been keeping my mouth shut much lately.

I have had to fire a nurse, be adamant about who can stay in her room during hospice nursing visits and which nurses may not because of behavior that I feel is not focused on my sister. This time with hospice is not an opportunity for you to talk nurse ideas, ask the same damn question you asked the last hospice nurse, or ignore my sister's needs because you are too busy trying to hear what the hospice nurse is saying on the phone. I choose which members on her team sit on the bench and when based on how she feels and what I see. I don't care if they like it. Because her health and best interest are what matters. I need a team that will treat her needs and symptoms and not be so focused on numbers that they lose vision of what the team is here for.

I get angry when she is in pain. I have made sure that orders are in place to avoid that. I will not put up with any nurse asking her to wait 40 minutes for her scheduled pain med when she can have her hourly break thru. I do not need someone trying to get her to stall out and be in pain when that alone can affect her breathing and anxiety level.

I am an emotional wreck, and it is showing. I am not eating right. I am not sleeping. :-( My acne is worse. It was bad enough being 42 with acne. Try 42 with acne from stress. Like acne even matters...
 
You truly are being tried. BUT you must look after your health. Set a clock somewhere that will remind you. You're taking such good care of your sister but you need care too. It's great you're advocating for you sister - she obviously needs you and must be so appreciative of everything you're doing (whether or not she shows it at the time). I feel for you both. Yasmin
 
you really are a very good brother and taking care of your sister very well. But you should take care for you too. Because you can only take care of her if you will take care for yourself first.
 
I hope that when I am in your shoes I am as strong as you. I hope I trust my own judgement and can yell at anyone who is so stupid as to let my husband be in pain for an extra 40 minutes. You are amazing...now don't forget your meds.
 
i am taking my meds now as I read the responses = I think I put it off when I think about it cause I am finally feeling a free moment, or I forget because when I remember I am busy with her. Hmmmm maybe I should leave them in the bathroom. V you will be as strong as you need to be. There is nothing like the love you have for your pal and anyone adding stress or allowing pain or being unjust in anyway will incite you because they cannot advocate for themselves. I am a non-controntational person except when it comes to her.
 
you really are a very good brother and taking care of your sister very well. But you should take care for you too. Because you can only take care of her if you will take care for yourself first.
Thank you - and I am not the least offended that you called me her brother, but I am female. I am loving her acceptance of my sexuality, and answering her questions she never got to ask. Its like we are trying to through a life of sister relationship to whatever als hasn't taken from her until all that is left to take is her last breath of air.
 
You are truly a blessing for your sister. I have medicine I take daily too and had trouble remembering to take it. So, I started putting it in a weekly pill box and sitting it near my toothbrush so I'd remember. I wish I could do something to help both of you. You are in my prayers. Please do the best you can to take care of yourself. Sending you a hug, Kim
 
You are a great brother and you too should take medicines on time. If you are healthy and good then you can take of your sister properly without feeling tired or un-easy.
 
Hi

Good for you. The medical peeps have a poor view of pain meds, obviously.

You say you make sure she gets her meds, so put your bottle next to hers. If they are.rigjt there, there's no reason you can't take them, then give your sister hers. Problem solved.

You can't help her if you're in a grand mal seizure, but you don't need me to tell you that.
 
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