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Amyotrophic Lateral Sclerosis (ALS) Message Board


Amyotrophic Lateral Sclerosis (ALS) Board Index


Re: Als
Dec 19, 2013
Hello simoncat1...I understand, as I am expected to be the "rock" in my family. Please know that you can come here to express your feelings and feel "cloaked" in the support of those of us who care.

As for your SIL, yes she must state her wishes (explicitly) in writing and have them legally witnessed, including the DNR (explicitly). Regarding her desire to not be "end stage" in her home, perhaps plan for in hospice care? My heart fills with sorrow for her, for you, for her husband. I grieve for you all. I must ask, though, what is her husband's roll in this? Is he your brother?

Another thought is POA...Does she have one? I hold my mom's POA (she's 87). It is a tremendous responsibility for me (the youngest of 6). I know what it feels like to make the hard decisions and serve with "boots on the ground". Those boots have been re-soled many times=)

I have never dealt with ALS, but have witnessed how devastating it is to several people throughout the years. HOPE is not a plan with this disease, so she must make a plan before she digresses beyond the ability to make her own decisions. Perhaps you can approach her from that perspective. You can transcribe her wishes specifically into print, so that she can sign and file with the appropriate entities.

I'm here, though I'm certain that is little comfort to you.
Re: Als
Dec 21, 2013
[QUOTE=WhistleDixie;5251672]Hello simoncat1...I understand, as I am expected to be the "rock" in my family. Please know that you can come here to express your feelings and feel "cloaked" in the support of those of us who care.

As for your SIL, yes she must state her wishes (explicitly) in writing and have them legally witnessed, including the DNR (explicitly). Regarding her desire to not be "end stage" in her home, perhaps plan for in hospice care? My heart fills with sorrow for her, for you, for her husband. I grieve for you all. I must ask, though, what is her husband's roll in this? Is he your brother?

Another thought is POA...Does she have one? I hold my mom's POA (she's 87). It is a tremendous responsibility for me (the youngest of 6). I know what it feels like to make the hard decisions and serve with "boots on the ground". Those boots have been re-soled many times=)

I have never dealt with ALS, but have witnessed how devastating it is to several people throughout the years. HOPE is not a plan with this disease, so she must make a plan before she digresses beyond the ability to make her own decisions. Perhaps you can approach her from that perspective. You can transcribe her wishes specifically into print, so that she can sign and file with the appropriate entities.

I'm here, though I'm certain that is little comfort to you.[/QUOTE]

No thank u, it is good to know that there is someone out there, that I do not know personally that I can talk to about this, u know u have to somewhat cloak yr tru feelings when around the family, I hope I'm posting this rite. Um, now she has been givn a stack breather, to exercise her diaphragm. (so lets face it, she cannot breathe properly, she cannot eat (choking issues), refused feeding tube, cannot, walk, talk, barely move, is incontinent. Well, to me she is near the end stages of life. Her husband is my brother-in-law, my husband is her brother. But I love her like my sister. She has 2 personal sup[port workers come in 2 or 3 times a day, change her, toileting, make sure she eats, (without choking), 2 of them are fantastic, some r very bad. She is now developing skin breakdown, on buttocks area. I have the flu, and have had it 3 times in 2 mth., so When I feel like that I can't go over there, cause I can't risk giving her any type of bug, if she get pneumonia, shes a goner. She understand that's why I cant see her every day. We communicate thru e-mails every day. Sorry, her husband, well, he is totally at the end of his rope, so very depressed. He feels that she should be in LTC, for proper care till the end., but as social workers say, if she refuses, then we cannot even put her on a list. as it stand now, someone big, is coming over Mon, hope I'm well enuff to go over, to try to talk her into a 1 to 2 week respite, where she will stay in a LTC facility 24/7 to give husband that is going insane a break. He tries his best, but cannot deal with having her home 24/7, her neurologist said to him, she is progressing faster now, if she chokes and dies, well it doesn't matter if u r there or not. So go out, and live yr life. U see her husbanf for 1st year before she got to this stage did not ever go out of the house, only to the garage. Lord, u must think I am rambling on. OK, u said I must get her wishes, I have told her that explicitly, 6 mths ago, she gets a shuttered look about her, the only wish I got was she doesn't want sad music, and wants purple flowers at her funersl. sigh. I don't even know what to do any more to su[port them. I'm gladf yr out there, listening to me, cause I really, really need this. Thank u for listening.
Re: Als
Dec 21, 2013
[QUOTE=WhistleDixie;5252153]simoncat...PLEASE feel FREE to come here to "air" your feelings with total anonymity. We are all here to support one another.

Your SIL's long painful death is so heartbreaking, for her, her husband, your husband, you and all those who love her. Long after she has left this earth, you all will grapple with your feelings of loss and emptiness. I love her spirit..."no sad music and purple flowers". Take your cue from that in dealing with healthcare directives being "signed".

She DOES need to be transferred to a Hospice Center. I disagree with the doctor who told her husband "to go out and live his life". I believe in the marriage vows we take. This is the "worse" of the "sickness". He needs to have been in therapy since her diagnosis, and especially now...so that he can see her through to "good-bye".

Thank u again, for responding. Her Power of Attorney is her husband. He will not go into therapy, as he already has depression from wayyy back and is under the care of a psychiatrist. Ya, I know, for richer, for poorer, in sickness and in health, I do believe in this as well as I am very spiritual, I think the one above is gibing me the strength to carry all of this. I did e-mail her this morning, re: her wishes, etc. DNR all of it I laayed it all out for her, bout legalities etc. I did tell her tho, I would only ask this once, if u want me to stop, then tell me so. She replied, I'm not there yet!!!
But, u see, she is there now, I know the stages of this disease, and I know that she is progressing fast, (inside, so does she),m so I replied back to her, OK, I won't mention it again, unless u e-mail me about it. So there it is. Stuck, it mite come to the point, that she is totallt paralyzed, with a feeding tube, respirator, etc, just keeping her alive. We were hoping that she would agree to go to LT care before that stage, but it doesn't look that way, also, she could stay at that stage for yrars at home, and I don't feel it is fair for her husband as well, the downstairs livingroom/kitchen has been converted too hsp. room, hard, I'm making her Tuna tomato sauce as she likes that (we r Italian), so my hubby will take it over later, please keep wriying me, cause I'm almost at the end of my rope, thank u so much for caring, sorry bout my spelling today, very emotional today. Huggs to u.

There are no easy answers here, as you well know. I pray that you all have the support and comfort of a pastor and church family. I keep y'all in my heart and in my prayers. Remember...I'm here for you=)[/QUOTE]
Re: Als
Dec 22, 2013
Thank u for being there, even tho u don't know me, or her, I see that we r both on the same page, that is what I needed to know, that someone out there that doesn't know us, can see clear headed, bout what I am thinking. This way I can feel at ease (somewhat), bout how I am feeling. No it is not easy, and I see that u have had yr share of heartache as well, and I am sorry for that as well. I have often wondered why we r put on this earth, well, now I know, I am known as the listener, and the person to take control when needed, and make order out of chaos. Yes, self preservation is exactly what it is, as per her request I looked all over for clinical trials for her. I did find out that her neurologist had referalls for ALS clinical trials, (I have my ways of finding out) and told her bout this. She felt cheated and robbed that the did not tell her bout this, but I did warn her that maybe they r accepting only so many patients, or so many people presenting with certain symptoms. She did confront her neurologist, and basically, he stated what I had told her. Another hope for her, lost. My heart broke for her. In the end I feel it will have to be my brother-in-laws, and their grown childrens decision, to get her into LTC., tho only problem is, the waiting list, is 3 to 9 mths. long, and if u put yr name down now, and by some fluke they find u a place, and she says no, well she goes to the bottom of list to wait again. It may be that she will stay at home, but I must check how my brother-in-law did the POA, if he included all medical issues. I do know that he still has a rescusitate notice on file. U see a while back, she was able to walk/shuffle with a walker, and able (Lord knows how) to get upstairs, to be. Our hearts were in our throats each step she took, 20 min. to go upstairs, Lordie, when I think back. Anyway, I got frantic call early 1 morning, that she fell (1 of many), but this time was different, she couldn't move and was crying, I said call 911, now, I'll be rite there, so rushed over, live 10 min. away, long story short, she dislocated her shoulder. Ended up in hsp. 2 weeks, then 3 mth stint for convalescence (sp), then I thout, go straight to LTC, we all did, she refused and went home. This is how I know how she is coded, she is not codded DNR, which, is horrible to say, but I think, that she should be coded DNR, and if and when let nature take its course. Well, here we r now, at this stage. I want to thank u so very much for listening, and giving me the strength to go on, as I am, and not feel that I was doing an injustice to her by asking bout any final wishes. Thank u again. Please reply, even if its just to say Hi, it's good to know there is someone out there. Thanx.





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