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Active member
Sep 14, 2012
Loved one DX
We really got into it. Last week the hospice doctor came for his visit and we talked about how much she has been biting her tongue and the knot that has formed. He told us to use a swab of chloroseptic for the pain. He also told us to be careful not to get it on her throat or spray her throat because of the numbing and her swallowing issues and how they were a choking hazard. This all being said she has been asking me to spray it on her throat because it has been sore since the weekend. I refuse and tell her why. I have been putting it on her tongue though. I notified hospice and they will check her throat today and i told her this all yesterday before the arguement.

She proceeded to tell me that I don't know how it feels to walk in her shoes and I don't care about her pain. She became so dramatic and started yelling in the voice that sounds like a deaf person because hers is almost gone. I offered her tylenol and ibuprofen because she had just had oxy. She shut down and stared off everytime I talked and yelled when I didn't - I told her someone needed to stand up to her because she was no longer making good decisions all the time. She told me I didn't know what was best for her and she was the one living with als. I told her she was the one and I don't know how it feels and that she didn't know how it felt to be me either and that she made me promise to keep her safe and not let her suffer when she died and that was what I was trying to do. Then I said what are we doing here trying to survive or assisted suicide. She looked at me and I said not on my watch! I will dump this shit out. You are not getting it. She said I will watch. I said fine do it yourself. Get up right now and do it. So I grabbed the chloroseptic of the shelf and went to the sink and poured it out.

Then she makes me call my sister and tell on myself - for why I don't know when she doesn't even help. She insists she is moving out which is funny because there is nobody else I can see. I walked out of the room and came back 5 minutes later to ask if she was in pain or needed anything else. It was all so emotional, and i felt a little guilty for defying her right to choose her care, but I just felt that what she was choosing wasn't safe and didn't want to live with the emotions if something happened.
You must be SO frustrated! I can just imagine that whatever you say or do, there are times when she just won't be content, happy, satisfied, or whatever you want to call it, with you. You are taking excellent care of your sister - it's just that this whole situation is impossible for everyone. I'm sorry I don't have any advice, but can you feel my hug?
I am very sorry that you are both going through this. It's not an easy journey for your sister or yourself. All you can do is the best you can in the time you have together. Yes, it is very hard being a carer, but multiply your own stress and worry a hundredfold and you might get a glimpse of how your sister is feeling right now. Keep in mind that you will weather this storm and come out the other side. Your sister will not. All these things will try your patience but please know, when all is said and done, everything you did for your sister and everything you said will stay with you forever. Kindness and gentleness works better. I personally, would have swapped the spray for something harmless whilst waiting on medical advice therefore saving her undue stress and confrontation. If you had done that you would never have needed to start this thread. Your anger is understandable as we all lash out at this despicable disease, but please try and hide it from your sister. She is coping with enough without adding guilt and anger to her burden. Have you sought help outwith your home? Do you have other carers who come in and therefore give you respite? If not, I suggest you ask. I wish the both of you the strength to get through this.
I feel so bad for both you an your sister. Please get some outside help to give yourself a break that I feel you desperately need. Please beg your other sister to help you out. Where we live Hospice helps the family not just with medical care but with emotional help as well. Tell your sister over and over again rather she is angry at you or not how much you love her. Don't beat yourself up for your decision rather right or wrong. Just go forward and take it one moment at a time. You will get through this. Ask God to help you. You can even yell at him. He can take it! He will help you if you ask. He answered many prayers when my mom was dying of cancer. Sending you a hug for courage. Kim
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Sometimes we just gotta fight. Lots of pent up emotions on both sides. If she didn't have als would you bicker with her?
I know if my sisters lived with me we would bicker. You did what you had to do. You wouldn't have felt right going against the doctors orders
She said what she felt. You know you love each other. You have nothing to feel guilty about.
no one is perfect--you are doing the best you can and vzandt is right--people fight. It doesn't mean you don't love each other.

Don't beat yourself up for being human.
We seem to hurt the ones we love the most. Hang 1n there she 1s just scared and lash1ng out, depressed ect.... My dad needed a mouth guard when sleep1ng. You m1ght want to cons1der one, my dad would gr1nd h1s teeth so bad they were break1ng off..hang 1n there...
she 1s so pretty:)
If her throat is hurting, you might ask if it's possible to perhaps water it down a bit.

I know it can be a little nu,bing, but you may ask the doctor I'f one spray would be safe if it's not near eating or drinking time.

Does she have a throat infection or is it perhaps sore from being dry?
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