Hello

[mcgarr]

I am new to this forum. My mother has ALS and sadly it is progressing rapidly. She already is on a feeding tube and can not talk or walk. Lately her strength continues to be sapped.

Emotionally she has never come to terms with having this awful disease. She has never welcomed any of the accommodations, making communication with her completely one-sided now.

My parents 40 year marriage has never been strong in my opinion and this added stress has not helped them grow together. My dad is doing a lot of help physically, but mentally he certainly has been heartless at times - even when considering the stress he is under.

And I don't want to paint myself as some saint in this. I pushed on my Mom hard at the begining and intermediate stages to accept the help and meet with the professionals, but when she continually rejected it I took the attitude of allowing her to do what she wants. I also overuse the excuse that I have three young children, a job with much responsibility, and a three-hour drive so that I don't get back much more than once a month.

My emotions run all over the place - sad, angry, selfish for not doing more, confused.

There is so much more I could say, but maybe this is a start to welcome myself.

mg

 

[Al]

Hi mg. Feel free to vent. Most of us understand what you are going through.
AL.

 

[witzz]

Hi mg,

Sounds like a very tough situation. I'm sorry that you're having to see your mother in such a state. It must be awful for you. As for her not handling things well, and your father not supporting her the way he should, that is very sad, too. One of the things this awful disease teaches us is that we are not in control of the situation. You can't make your mother's decisions for her. This is probably the hardest part of all. Hang in there!

~Witzz

 

[The Sass]

I am so sorry for your situation. I have been there too and the best advice I could offer is to talk to your doctors to see if your mom is eligible for hospice. They are so much support and help. Look and find help where ever you can. It is a long road and cannot be traveled alone.

Sass

 

[nurburch]

Hello,
I am new to your forum, but not new to the terrible diease that is ALS. I am the
fulltime caregiver for my husband. He was Dx in Nov. 06, but s/s started in Feb 06.
His process has been fairly quick, for he is in his chair most of the time and no
longer can function independantly. I have read a few of the comments and
thoughts, wow how sad that this process is so simaliar for everyone. Grasping
at straws it seems. We see Dr. Nash @OSU every 3 months with no news of
a cure or a trial that works. My husband was very sad today....what do you
say to someone who is waiting to die. We have three kids. I work full time.
I guess I just need to vent thoughts here with you all. Nice to know that
others have looked for the miracle cure too. My husband was a deputy, a
very strong man, who now depends on others. It has been an ugly road
from anger to uncontrolled crying. I wish I had some comforting thoughts
for him. well, thanks for listening.

 

[brooksea]

Hi nurburch!

Welcome to the forum. Sorry about your husband. ALS seems to hit the strongest nicest amongst us.

Hang in there and feel free to come to the forum anytime. Lots of help here.

 

[nurburch]

children

Hi Jimercat,
I am very surprized to see all of the familes with young children. Wow, I thought the
mean for the diease was older men. My kids are 15,13, and 9. All are very active in
sports. My kids are a great help to me with their dad. I work nites, so that I am home
to take care of him during the day. I thought I was alone in the rat race of maintaining our home, kids, and working. Nice to hear that others are doing the same.
Do you have outside help yet? I am doing everything myself at this point. I am
a nurse and feel that I should be the one caring for him. He is progressing so
fast lately. Speech is slurred and neck is heavy. Sad tko sit and watch an not be
able to fix it. You are so right that the children will follow your lead with emotion.
I really need to pay attention to the reactions I have. Hope all is well as can be for
you and yours. thanks for listening.
sb

 

[CindyM]

Hi Nuburch. I'm surprised at the number of younger families we are seeing lately, too. Every family combination has its issues, of course, but I worry about caregivers with jobs, young kids, and now ALS on their plates. I hope you are able to get some outside help- if not with your hubby, maybe with the kids? Some other family or church group or somebody might want to step up and take them to the park, bring in suppers for all of you- all the things i would do if you were my neighbors! Cordially, Cindy