My mom and ALS

[ShellyRenee]

Hello to all,
I am new to this group and ALS, so please forgive me if I seem to babble. My mom (step-mom) was diagnosed with ALS at the end of May of this year. We all were in total shock and denial. This seems to be such a cruel death of a human. Now that my mom was diagnosed it seems to be out there.
Here is my (our) problem(s)1.) My mom will not talk about it at all. (2.) She does not care to learn about ALS. (3.) She has 2 brotheres 1 sister and 1 niece who have MS, for many years, for which we think she's thinking she will go like her family, meaning many years. (4.) Bulbar, is through the mouth & throat, yes? This is were she has it. VERY hard to understand her unless one knows what she is talking about and that we are looking right at her. (5.) She is acting like this is normal every day life. She is agreeing to have a feeding tube inserted because she is down to app. 93-95 lbs. Also her doctor has recommended a suction device because she is "choking" often, daily. On Thursday she has also agreed to let Hospice come in. I am SCARED. I want to know what she is thinking, how she is feeling, what are her wishes? Our parents always took care of us and now I feel so helpless that I can't "take care" of her. Will I do the right thing? My father is crushed, like any other spouse I'm sure. But to see the helpless hurt on his face, or to see a tear slip out of his eyes is heart wrenching.
How will I know I am doing the right thing when she wont talk about this. I am the only daughter (her step-daughter) with two real and two step-brothers, the boys DO NOT HELP OUT! It's me and my dad.
See I did just that, BABBLED. It stinks to lose a parent, a good parent to this. Anyhow, any help, advice or direction would be greatly appreciated. Thank you in advance.
I forgot to mention she is turning 64 at the end of the month.

Trying to keep my chin up,
Shelly

 

[twospeed99]

I hate it when you read a post like this where the view count goes up but the replies don't.So here goes, all you can do is continue to be there for her and for yourself.The medical issues will take care of themselves and are out of your hands.There will come a time where she will reach out and you'll be there, even if she doesn't, you'll know for your own peace you were there for her.Wishing you the best.

 

[Al]

Hi Shelley. Sometimes it takes some people longer to come to grips with this thing. Three months is not a long time to be still in shock and denial. With getting a feeding tube and losing the ability to talk she should start to be convinced it's not MS. I wouldn't think any of the others would have the same symptoms as her so she will realize it someday.
All you can do is tell her you love her every day and be there for her. Hopefully she will want to talk soon. Good luck and never worry about babbling here. We've all done it. Just part of the stuff that is ALS.

 

[Granny]

Hi Shelley,
Welcome. I agree with Al that three months is not a long time to get over the shock of learning that you have ALS. I did not want to talk about it for awhile, but came around and now want to know whatever I can. When I started tube feeding it made a big difference. My weight became stable and I had much more energy when I began getting enough nutrition. I hope this is the case with your mom.
I pray for you and your family, for peace in the midst of this hard time.
You are doing the best you can for your mom.

 

[ShellyRenee]

Thank you to all who responded to my"babbling". To know I'm not the only one out here dealing with this helps. Meaning, real people who care about Moms, Dads, sibblings, friends anyone who affected by ALS. Reading stuff off the internet is depressing. But talking ith others helps.
My mom also has COPD and continues to smoke on top of the ALS. One might say "why stop now?" but I say "I don't want to lose her anytime sooner". She seems to us to be going down hill fast. She still drives and does stuff but she tires easy & chockes alot. I am hoping this feeding tube is going to do a great deal for her. We have not been told "how long she has" and do I really want to know? Yes and No, I want no regrets. Saying goodbye is not easy. Can you all tell I have never really lost a loved one? Grandparents that were older and I really didn't have that bond yes but this is MOM......

Thank you again for the kind words. God Bless you all.

Shelly

 

[DebbieD]

welcome Shelly.

I lost my Mom to als. It is in our family.

It is hard to say how long someone has. It varies so much from one person to another.

 

[dana]

Hey Shelly,
My dad also has bulbar symptoms. His speech is difficult to understand. Sometimes it sounds great, and other times I am not too sure what he is saying. He just laughs when we are guessing what he is talking about, but I am sure it gets really frustrating. My dad also has had some choking episodes, which scare the crap out of anyone who is around (including himself). That has been the worst thing to watch out of all of this. What is the suction device that your doctor is suggesting for your mom? I am curious to see how this work, and if it is effective for her. Hang in there. This ride can be bumpy at times, but just try to enjoy the time you do have with your mom. I'm sure you already know that though.
Dana

 

[rcharlton]

Hi Shelley,

I would not worry that your mom does not talk about her ALS. I can understand your concern and your wanting to be able to share your mom's feeling to help her - but, I mean - after a certain point - what is there to talk about?

It could be that your mom is in denial - which is not necessarily a bad thing with ALS. I beleive there have been studies that show heart patients in denial have a better survivor rate than those in full acceptance.

I think that the fact that she is acting like its normal every day life is the best medecine - certainly better than being depressed and acting like it's the end of the world.

Obviously there needs to be some adjustment as there are certain things that PALS can no longer do as we once could - but the fact that she is agreeing to have a feeding tube inserted is some form of acknowledgement of her condition and an acceptance of making some necessary changes to her life in order to adapt and carry on - a good sign...

It seems to me that the only thing in common with those people who have survived longest with ALS is not what supplements they are taking or not taking or what alternative therapy they are undergoing - but their attitude - people who do continue to act, as best they can, as if everything is normal appear to be best able to cope with the disease.

I know that I don't want people treating me any differently - or soft stepping around me and the ALS. If you aren't sure how to act around your mom - I would say keep doing what you have always done around her...make her feel normal - make her feel that no matter what happens she will always be able to spend time with you - to laugh and talk as you have always done - about all the good times that you have had and all the good times you still can have...

 

[Carol Deboer]

Hi there guys,

I agree with you all. Try to maintain as much of a normal atmosphere as you can. Just do the things that you do each and everyday, we did. Attitude is a huge thing with als, I know. It can give you added time and added comfort in these trying days. I used a suction device on Henry. It is just a little pump type machine with a long suction hose tube. It was a little tricky at first, I was afraid of choking him more so. The therapists will show you how to work the machine which after you get on to it is nothing. I found that after a while I knew how far down to insert the tube and along the side of the mouth and throat. It helped out greatly. Do not be afraid of it. Just learn how to do it properly and you will be alright. Henry also had a feeding tube, and his weight to stabilize for a long time with it. Choking is such a scary thing, and one of the most helpless feelings you can have. Again, educate yourself in how to deal with it. As for being scared, you are allowed. None of us want to lose anyone we dearly love to anything. But, watching someone go through als is one of the worst things I think that anyone will ever have to witness. I think now, that after Henry has gone, I think back and wonder how did we do that? How did we manage? How did we go through such hell, and survive? You will find that manyblessings will come your way, just allow them to happen and to relish in them. You will find that now is the time to allow yourself to be sad, angry and frustrated. We all felt these human emotions here at our house. Just remember, stay strong and let each day happen as it comes. Ultimately, it is not in our hands anyway. All the modifications that you will have to make will seem overwhelming at times, however, they will become a normal part of your everyday living. You will become learned in their capacity to help you out. Never give up hope either, one day this dreadful ailment will become a thing of the past. Keep praying for a cure. Wishing you the best, and feel free to babble here anytime, your always welcome.

Stay Strong, Carol