My Mother

Hi I'm new to this board but I appriciate it being here. My 78 year old mother was diagnosed with ALS last October but I believe she's had it for the last 2 years or so. During that time it was believe that a benighn brain tumor was the cause of her speech and swallowing problem that gradually caused her to lose her ability to talk altogther and now has to eat thru a peg tube. One of the saddest things about this is that up until the diagnosis last October she had a very positive outlook on everything but after hearing that she has suffered some major depression which is just heartbreaking.
I live with her and take care of her and I'm happy to do so, plus my six brothers and sisters do help and have been very supportive of her because she's a great mother and we'd do anything for her. The problem for me is that it's obvious that she's not going to get better and that this is going to take her life in the near future and it's beginning to way pretty hard and is very painful when I'm not always sure what to do for her, plus I've had a history of depression all my life and I worry once she does go I'll want to follow her because I worry about life without her.
I'm not really sure what I'm asking for but all of this is really painful and even though I knew it would come to this someday all the preparing in the world doesn't make the hurt any less noticeble. I go to therapy and attend a DBT group to help deal with anxiety and I don't let any of that interfere with helping my mother because right now that's most important. My therapist recommended that I come here and say what's going on with me so that's why i'm here, and I'm sure many of you have similar stories so by no means do I think I'm unique, i'm just worried how I'm going to handle all of this when the end actually comes. Thank you for letting me post here.

Welcome to the forum. Sorry about your mom and what you are going through.

You are right, a lot of people here are going through the same thing, so many can relate to what you are experiencing.

If your mom is willing to get a feeding tube (PEG) and when her breathing becomes a problem get a tracheostomy and ventilator she can live a long long time. If you are willing to care take then her life does not have to be over. Life can be full and rich if she can accept these things.

blzr, I'm so sorry about your mother's condition, but glad you found us, and glad she has so much family support ... and that you yourself have such an excellent support system in place.

There is no way you can prepare yourself for grief. Your mother may live a long time yet, but the pain will be there when the inevitable happens. What most of us here do is treasure the moments we have and concentrate on being alive and together with our loved ones.

There is a terrific community of caregivers here on the forum to support you. Continue to reach out, and treasure the days you have with your mom. I think you have all the tools to handle whatever challenges come your way. You're doing all the right things.

Blessings.

I'm sorry you've had to join the forum due to the diagnosis of your dear Mother. My mother also has ALS, although she is 9 years younger than yours. It sounds as if your Mother has the same form of ALS as mine, which is bulbar onset, meaning it starts in the bulbar region of the brain which controls speech and swallowing.

In general bulbar onset ALS as a worse prognosis than other kinds, so if your mother is still around and doing well after 2 years then she is obviously a natural fighter and doing very very well.

The forums are very supportive and informative, and now that you have a diagnosis you can be strong for your mother and be aware of what is likely to happen as the disease progresses, and try to be aware and alert of what her future needs will be. In that way you can deliver her the very best care possible and make her ageing as comfortable and fulfilling as it can be.

I hope that your brothers and sisters are able to support each other as much as it sounds like they are supporting your mother.

sesl

Thanks for the replies everyone, I do appriciate them. In answer about the traceostimy she doens' t want to have one done. She doesn't like the idea of it or the fact that she would need so much care afterwards. She may change her mind later but for now we understand and respect her wishes.
She is a fighter which is why she is still here with us but is has been two years and it's getting worse. She's gaging alot and had a bad choking fit the other night that scared both me and her pretty badly. She uses a c-pap at and has a suction and coughing machine here as well for her. she doesn't always like them, especially the cough machine, but she uses them regularly. My father died four years ago due to a series of strokes that caused dimentia and while it was tough to see him detiriate like he did I have to say this is more painful and not just because I got along with my mother better. Thanks again for the kind and helpful words.

Sorry for you and your Mom. Are you certain that it is a CPAP? She needs to be on a BIPAP machine! hugs to you.

Hi and welcome. Sorry to hear about your Mom... We are here for each other and there is a lot of help and encouragement. I was diagnosed with bulbar a year ago. Your Mom is so blessed to have you near to help her. i can tell by your post how much she means to you. My children are helping me make every day count. We have made lots of wonderful memories that will last forever. Hug to you. Linda

Thanks again everyone. This is helpful. We are all fortunate to loved ones to help us through this.

Yes it is a BiPap machine, everyone just calls a c-pap out of habit.

Dear Friend, I am 72 soon and have been lucky enough to have the limb onset. But having given the future much much thought - as of course we all have - I cannot see the point in prolonging things just to continue with a further descent, with even more disablement. I do not mean this to be disheartening - but realistic. We all have to die at some time. Your mother and I have reached our sell-by date and have had our lives. OK, we would have liked more - so much still to be done - but life has to have a certain level of enjoyment at least and if your mother can not have that, then I understand her wish to let go. Younger people here should hang on for all they are worth in the hope that a cure will come, but in a way, perhaps your mother may even feel relieved that she KNOWS where she is on the route of life to death. No need for that terrible fear of the unknown - we know the worst already.

You will find the strength in knowing you have done all you could for her and in knowing she will be no longer in distress and sufferring. Believe me.......I lost a son at the age of 17 in a road accident. I thought I could never live again - but one does, because life is like that. We suffer, we mend. And above all, you would want to make life worth while because it was a gift from your beloved mother. You WILL be happy again or you would be denying the value of the life she gave you
Irismarie

Wow, that is very powerful, Irismarie. I hope it helps Blz. I know it helped *me a little bit. ( My 79 year old father has bulbar onset too. )

Debbie

Welcome to the forum blzr503. The people here truly understand and are very supportive.

Irismarie that was a profound thought provoking post. My Dad was 69 when he died. He still had much to give but by the attendance at the funeral home it was obvious that he lived and he lived well. Thanks for your perspective.

irismarie, you just said it all so well. I just want you to know that I agree with you. Only concerning myself though... I think every one will make the choice that is right for them. I have started with Bulbar onset and i am asked many times will I do everything to stay alive. I am taking it one day at a time. It will depent how far my I have progressed when the time comes for any invassive machines to help. At least we do have a choice on that matter... yippie! A choice we can make about our bodies! One for us!

blzr503......I was just checking in to see how you were doing. How is your mom right now? I am sending big bear hugs to you....hang in there hun!
Kari

My mom was diagnosed at age 78 with bulbar onset ALS. She passed away in Aug. of 2008. ALS was both horrible and beautiful. The beautiful part was my mother showed such strength and dignity that I will forever carry with me. ALS changed her for the better. She became a fighter for the first time in her life. She died peacefully under Hospice care.