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mysticunicorn66

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Having a need to vent and thought just maybe some of you could offer some suggestions. I am the youngest of three children. My older sister has ALS. We have a brother who is the oldest of the three of us. Our brother was with us when we got the diagnosis from the doctor. I am sis's POA and caregiver for the duties that require more lifting, etc. I live 20 minutes away. My brother lives next door to sis (who lives with our Dad). The problem I am having is that my brother seems to be walking around with blinders on. I came after work to check on sis and tend to her personal care, only to find her crying and upset. I found out that my brother, in his infinite wisdom, thought it necessary to give sis a lecture on fiber, eating, drinking, etc. Told her she needed to eat more fiber, drink more water, etc. I about went ballistic on him. I marched over next door and tried to explain to him what is happening with sis, but he keeps butting heads with me and saying that she just needs to drink more. I spoke to his younger daughter (she is twenty-eight)). She told me that her Dad is in denial to the fact that sis is getting worse and has a terminal condition. He was telling me about some amino acid that regrows nerves? I told him, yet again, that while there are some promising studies, at this point there is no cure for ALS. I told him that I didn't have a magic wand to wave over her to make this all go away. If that would have done it, I would have done this long ago because it breaks my heart when she is in so much pain that I can't keep her from screaming. My brother just goes on like everything is fine. He went on a vacation to the beach for almost two weeks. Not once did he call to check to see how things were. When he came back, he never even came over to see her until 3 days later! I just cannot fathom how he can do this. The two of them are only 3 years apart. I am way younger than they are (sis is 9 years older, and my brother is 13 years older). Just makes me upset that he walks around like nothing is wrong, while I have been taking care of everything else at this point, except feeding her and emptying her cath bag--which is the only things my Dad can do to help as he is not in real good shape himself.
 
I am sorry you are going through this. In fact, this unfortunately is quite a common scene among PALS and CALS here. It helps if someone close to the person gets it and is in the family because they can try and convince the other family members in time. Can you just imagine though if your whole family was in denial about everything 'bad' medically. That is the life I live. I was diagnosed 2x's though dr.s checking out some other things, my mother was there for both times and she refuses to believe it. It is hard on me to want to have a mom take care of you when all she says is that I need to take more daily vitamins, a brother who says more water will do the trick, and a dad who states I just don't eat enough anyway so it is causing all the problems. Talk about beating my head against a brick wall with all three of them.

I unfortunately don't have a magic wand either in a way to make sure your brother 'gets it' What I can tell you though is that often, when loved ones are in denial it is because they love the person too much they can't even fathom that they would be sick. Even if this isn't true it is nice for me to think about so I don't scream at my mom every time she tries to force another ensure down my mouth or daily vitamin.

My parents have become more aware with time in that they see I just can't do things I used to. Also what helps is me physically stating..' I can't do that mom...I can't do that anymore. I can't lift my leg today...etc. (I am not being whiny.. I just state one thing a day to 'remind' her that I am still sick even though it is a new day and a new set of vitamins given to me. She usually ignores it but I am sure something seeps in. Also one day, my mother thinks I should still be looking for a full time job, I said I don't know what I am going to do because no full time job will want someone who is sick. After all, I have been diagnosed with a neurodegenerative disease. She was quite silent, but nicer in helping me out for the rest of the day. Another time while in the hospital my mother complained she was there so late and said I should get out of the bed so she could lie down(mind you at this time I had an infection in my appendix and drs. were about to take it out) I screamed at her and said "I am sick not you! And if you don't want to be here then don't. I am tired of fighting against you and having you act like I am not sick when I am!" That worked out for a while too.

If you find the magic wand to make them 'realize' how incredibly hurtful they have been by ignoring and denying the problem let me know. Till then, good luck and patience to you friend. Keep helping your sis out, you are helping her out more than you realize :)
 
I can only tell you that this is very common. The ones you think would help the most turn away. Let's hope for both their sakes that he pulls his head out of his a$$!

Sounds like you handled things just fine! What else can you do?!? You can't make him do more.
 
I have no idea of what to tell you. My BIL's step-father (I use this term loosely; mostly the butthead was married to my loving MIL who passed last September) doesn't do anything for Tom. They live in the same house and he NEVER asks if Tom needs a drink, ice, can of Jevity, etc. It's like if he doesn't do anything for Tom, then nothing is really wrong. It drives the rest of us nuts, but we know there is no way he's going to change now. We just work around his big, lazy butt.
 
Perhaps there is someone that brother will listen to, like his pastor or a friend. Have them explain reality to him.
 
Mercy, sad to say, it comes with the territory. Most often, we are as unable to deal with
others sickness, as we are with our own health. Effective perspective.

Dr's tell us that it is mostly in your DNA. :) While that may be true, it doesn't comfort us much
when we are looking at our own x-rays on the screen. That is reality and even that reality
deserves a second opinion.

Relationships are constructed in such a way that we earn or are given the right to speak into
one anothers lives. When words are exchanged, hopefully, they are meant to bring remedy.

Actually, love means nothing to a tennis player. :)
 
I have contacted both of my brother's daughters to talk to him. They are both trained in clinical psychology with Masters Degrees. I told them that I need them to try talking to their Dad about what is going on and how his giving sis grief to eat more fiber, drink more water, eat more of this and less of that sort of thing is only upsetting her. I also asked them when they talk to him to see if they can find out why he doesn't come over and talk to her. She is feeling like he is abandoning her because she is terminally ill. I KNOW how sick she is and realize that things are not going to get better...barring a miracle or a cure. I just "put on my big girl pants" (as Mom used to put it) and deal with it. I know that if I were in her condition, I wouldn't want to be alone having to deal with this shit all on my own. I just don't know how he can be such a turd and not even bother with her. I just don't get it. My sis gets nervous enough because she is hungry, but doesn't know what to eat. I just suggest something like a sweet potato custard that I make for her. She will eat it, but often fills full quickly and gets upset because she couldn't eat it all and she cries. I just gently move her bedside table away and sit beside her and lean in to kiss her on the forehead. I just tell her. Sweetie, just eat and drink whatever you want, whenever you want, and as much or as little as you want. I understand that things are slowing down and not moving too fast, despite what we are doing (Fiber, Miralax, ect.). Really steams me when brother acts the way he does and upsets her. She's got enough shit to put up with. I feel for her and what she is going through with this horrific disease. I just love her to pieces and when she hurts, I hurt too.
 
Disclaimer: Free advice might be worth what you paid for it.

With people who seem afraid or inept or clueless or _______ [ fill in with what ever ineffective attitude may seem appropriate ] I have sometimes had success in making clear, actionable requests. With one friend, I asked him to digitize some photos I had; he was clearly unable to have a meaningful conversation with me about my illness. With someone else, I asked for a one-way ride home from a medical appointment; that was about all the contact she could handle.

Those people felt better about themselves and I did need help with those things. I wanted more. But, I have to meet people where they are.

With one old friend, early on, I made the mistake of pointing out how she was being a jerk, what she was not doing, etc. That was not effective. I don't think anyone has found it useful to point out my character flaws either. :shock:

Some people want to help but are terrified and don't know what to do so they do nothing.

So, my free advice, is to ask if the person can do X (wherein X is something specific and doable). If I ask for love and support, or even "help", those are vague terms and the meaning to me changes depending on my needs.

Your mileage may vary.
 
Disclaimer: Free advice might be worth what you paid for it. I like that, and it is free..

I think today's crowd has learned mostly the price of things , and has trouble decerning the
value of those same things. Therefore, the best things in life are free. The wise learn from their
mistakes, the wisest learn from others mistakes.
Sometimes with my children I used mercy and let consequences teach. I certainly have seen
and experienced some of the same things you all mention, but they don't bother me.
Some of them are so predictable. Others are my judgement, wheather some one meant to
hurt or are just immature. Either way, it is my character that is in question here. I hope when,
not if, I am misunderstood, they will use the same slow to wrath formula I tried to use.
 
Early on in Glen's illness, someone suggested I start keeping a list of specific tasks that needed to be done: mow the lawn, take Glen for a haircut or accompany him on a short walk, walk the dogs, bring a meal, etc etc. Then when someone asks what they can do to help, you can hand them the list and let them pick something specific. The premade list means you don't have to search your brain for something specific, and now you've given them a specific, actually helpful, task.
 
Praising Him in this storm. Even through all this, my kids are learning a life lesson that no school can teach them. At least they have compassion for their aunt and all she is going through. They are quite delighted to help out in any way. Blessed with a wonderful husband who helps me too. They have been helping me move my sister in the bed when she needs moved over or up on the bed. Unfortunately, no room in her room for a lift.
 
It sounds like you are doing a great job-I hope his daughters will be able to get thru to him how his actions are impacting you and his sister.
 
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