Sitting on the Sidelines - unable to help...

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julialee23

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Oregon
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Jacksonville
I am not sure this is the appropriate place for this post, but I really have no one to talk to.

My aunt was diagnosed with ALS over a year ago. She is my mother's sister but they have been estranged their whole lives and so I have only in the last few years, been able to form a relationship with her - in secret since my mother would consider it disloyal.

around a year and a half ago, my aunt began to pull away - not answering emails or calls. I have complained to my Great Aunt and my cousins who have something of a relationship with my aunt and they all encouraged me to keep trying. Finally, a month or so ago, I told them that I thought Jeanette was no longer interested in a relationship and that is when my great aunt told me that it was because of this diagnoses. I was not supposed to know - no one in my family was supposed to know and my great Aunt who is 93, has had to be her only support.

My cousins are physicians and so they are trying to counsel her a little, but the only person she is really attached to is my great aunt who is far too old to be dealing with this on her own.

she finally managed to get Jeanette to agree to me being told (which had already happened) but at least i was now able to reach out directly. She is not returning any phone calls however despite my assurance that i will deep her secret and will not let my mother or siblings know.

She lives in a very remote part of the county and when she drives, it must be along curvy country roads. My great aunt is very concerned for her being out there all alone, but since she won't allow anyone out to see her (we suspect she cannot take very good care of her property or her house and doesn't want anyone to know), we only get updates when she manages to come out to see my great aunt.

Apparently, she is not doing well this week - being too weak to drive due to GI troubles from some self styled medications she is taking that she feels are her only hope. they are causing severe diarrhea though, and she has lost a lot of weight and was never big to begin with.

After being shocked at the news, i am now finding i am becoming detached again, since she is not willing to reach out. It can't be good for her to be so far away even if she hasn't deteriorated so far that she can no longer drive. That day will surely come.

She won't listen to my Great Aunt who wants her to sell her property and move closer in and has talked obliquely about suicide.

I don't know what to do. Should i break my word and tell my mom? i am not sure how she will react, but it could be worse keeping it from her since she will find out eventually and likely question why i didn't let her in on the secret before.

We have all suffered from their dysfunctional relationship - no family thanksgivings - secret lunches and now this.

At a time when all stupid childhood fights and feelings of being favored (they both think the other was given more) should be put aside, she is continuing the dysfunction, and in the process hurting herself and the rest of us. And yet, I know the depth of dislike is fierce and I am not sure my mother would do the right thing if she knew the truth either....

help!
 
Julialee23,

I can sympathize with what you are going through, I'm not sure anyone can tell you with any degree of certainty, what you should do. While we might be willing to listen and offer comments of support, we'd never adequately understand the underlying issues that will influence your decisions. It is a tough place for someone caring, like yourself, to find themselves in. I hope you can find some sense of "good" in the fact that you've reached out and offered to help. I truly wish you well...

Jim
 
Oh god beyond tricky... think it's difficult to know what the 'right' thing to do is & what might be right in one persons view won't be right for someone else. I sympathise as we have had similar problems/strained relations etc & it makes things even harder. It's so frustrating like you say as it seems so 100% inane to be continuing a feud in the knowledge that your own death is coming a lot sooner than you thought. Crazy..
It sounds perhaps like telling your mother mightn't help out too much given that they have a poor relationship to start with. It also might make your aunt more cautious of involving you. Or perhaps there might be a total volte face & your mother might weigh in behind her-I have no idea if this is likely or not. Logically your mother will eventually learn of her disease so it's a question of when & who tells her.
is there any way of getting your physician cousins to get more involved as an additional back up & also to discuss her wishes for the future. She may not want to and that is also her choice. For now though it sounds like you are doing all you can, all you can do is keep the lines open so maybe drop her an email/text/call every couple of weeks to say thinking of you&let me know if I can help in any way. Sadly you can't beat people over the head & make them do the logical thing - if you could I would!
 
I am not sure if you explicitly promised to keep her secret. If you did, I would honor that for now. As Sally says, it will come out.

But I would also try to get her more support, including yours, secret or not, sought or not. She is elderly, with a terminal, paralyzing disease. She is not going to be able to stay alone where she is and if she is considering suicide, it is largely because she knows that and has no better plan. The person(s) closest to her might corner her [with due notice], sit with her and try to make one together, in a "getting to yes" kind of way. That presupposes those of you that know can discuss together about where she could best live and receive help, keeping her need for independence as long as possible in mind. You might also consider the availability of non-family help in the area(s) where you live, given the family dynamic.

You give it the best shot, before death on the curvy road.
 
>I don't know what to do. Should i break my word and tell my mom? i am not sure how she will react

-it may be time to consider talking with clergy even if you don't have an existing relationship with any. can't hurt to ask...
 
-it may be time to consider talking with clergy even if you don't have an existing relationship with any. can't hurt to ask...[/QUOTE]

I can't believe I didn't think of this. Thanks so much for the idea which I think is excellent.

I did tell her in an email and a voice mail that I would not tell my family so I would have to explicitly break the promise and I am not comfortable with that yet though I understand the time might come. In the meantime, I need to talk to someone for advice and this would be a perfect substitute for my family.

I thank all of you for so much for responding. I was so worried you would be upset that I was using this site as a sort of substitute for family counseling. We have become so used to this dynamic that we even laughed at it but the diagnosis of ALS has made my cousins and great Aunt and I look at it in a very different way - We realize how destructive it has really been and how much of an impact it has had on the rest of us.

My physician cousins are doing their best to advise, but being a cardiologist and a GP, they really aren't experts. We are all worried that she is doing more harm than good with her self medicating and also very worried she will hurt herself or someone else traveling on those country roads.

I've read a good few posts from people dealing with this horrific disease and they are doing it with such grace and humor and with positivity and it makes me hurt for my aunt all the more who doesn't appear to have come to terms with it. I would hate for her to fight in such a way that she misses all the joy she could still have.

I left my weekly voicemail yesterday - letting her know that I am here if and when she needs me and that I am keeping tabs on her through my Great Aunt but I don't expect her to return the call....all I can do at the moment is keep leaving those messages.

thanks again everyone! Hopefully I will be back here some time soon letting you all know that we are at least in contact and moving forward in a more united way! keep your fingers crossed!
 
>I was so worried you would be upset that I was using this site as a sort of substitute for family counseling.

we are all here for a reason. ALS is an encompassing disease affecting PALS, CALS, and any/all who care.

IIWII ("It Is What It Is!") :), but ALS still sucks!

Max
 
Julia,, she will need you. no doubt. this is a brutal, horrible disease and she will not be able to care for herself no matter how independent she is now. please stay in touch with us, and maybe keep your promise to her. but the time will come and she will need more and you can be there for her.

the wonderful thing about humans is we can have compassion and forgiveness in our hearts no matter how bad the hurt was originally.

I am glad you are there for her!
 
After more than a month, I have seen my Aunt and she looks ...really well! I am shocked at how well. She is very thin and walking with a cane but she is still driving. The biggest change from the last time she was seen by any of the family is that her voice has become affected. But she seemed in good spirits and asked me to visit! I am soo grateful and my great aunt and cousins were all very happy that we were all able to see her together. It appears it will be a journey we will be able to take together.

I am hoping that at some point she will allow me to tell my family but this is a very big step forward and I take it willingly!

thanks all, for listening!

I will now start searching threads for those whose voices are impacted. I would like to understand what is the expected progression from this point. I was so hoping that her voice wouldn't go. I've heard of some whose voices are never impacted.
 
great that you have been brought back into her world.

If her voice is slurred then this is bulbar symptoms. My husband started with bulbar. Many PALS end up with bulbar but not all.

If her voice is only very weak it could be that her breathing is being greatly affected.

If you search here for bulbar symptoms, but stay away from the do I have section as it will only confuse you greatly.

One step at a time, and you could help her enormously :)
 
Julia, I only hope my nieces love me as much as you do Aunt. You are a blessing to her.

Debbie
 
>I will now start searching threads for those whose voices are impacted

you may want to research voice banking.

Also, Julia, remember that with ALS we are all like little snowflakes :)… Everyone's progression is different. That's the one constant that I've found about ALS. We all progress at a different way. Some fast, some not so fast, and the lucky ones a slow progression which can mean years of comfortable living.

also there are all sorts of things you can try to do to help slow the progression. On the other hand, if everyone progresses at a different pace there is no way to know if any of the things we try to do anything!

Hang in there!

Max
 
It sounded more weak and gravelly than slurred. I will search for voice banking. I suppose it would be hard to correlate actions with reactions if everyone progresses differently, but having SOMEthing to DO is so much better than feeling helpless!
 
>but having SOMEthing to DO is so much better than feeling helpless!

have you been to
 
>SOMEthing to DO is so much better than feeling helpless!

have you been to alsuntangled.com, alstdi.com, etc.? also the pals only fb group ...
 
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