trying

[AngelaRenee]

Today was a bad day. Mom fell but luckily did not get hurt. Her speech is significantly slurred legs are weaker balance is off. She panicked and had a bit of a breakdown. My sister forgot to remind her to take her antidepressant yesterday so she was feeling worse than ever. I watch her during the week until my dad gets home except for Wednesdays when my sister is there. Yesterday my sister told me she couldn't take it. I replied "we are in this together." The house is a wreck due to remodeling our shower to make it big enough so we can shower her more easily. I have been cigarette free since Sunday and im not sure how long I can last. I just wish my mother's progression was within a number of years instead of months. I want her to see me get married and have kids. The future doesn't seem promising. She has to decide if she wants the feeding tube by next month but she is unsure. I hope she does decide to get it. Sorry just need to vent.II know we all share similar struggles.

 

[Barbie]

Vent away--that is what this is for! and chew a lot of gum or get that e-cigarette so you don't fall off the wagon! (good for you by the way smoking is so hard to quit!)

Tell your sister to put on her big girl panties and get with the program!

You are having hard times and doing the best you can. ALS sucks, right? give your mom a big hug and kiss from us. we understand.

 

[skipper66]

Hi Angela,
Feel free to vent anytime you want. I think it is great that you are trying to quit smoking. I heard the e-cigarette works great though. As far as your sister goes I'm sure she is venting as well. She probally truly feels she can't take much more. But, I'm sure she will get back with the program. We are all stronger then we think. I admire all the CALS on here who do so much for their loved one's. I do errands and things for my dad but he doesn't let me help with his day to day caretaking. He doesn't want me helping him to the rest room, dressing, and all those things. He uses a wheelchair when he goes anywhere outside the home but does walk with a walker in the house to the rest room and into the kitchen for meals. The walking helps with his circulation in his legs and keeps them from swelling. He also makes sure he elevates them from time to time while sitting. But, dad requires a very strong person to stand behind him holding to his gait belt. His legs could give out at anytime. Thankfully, they haven't for a long time.
You also mention about your mom having to make a decision as to rather to get a feeding tube or not. My mom had colon cancer and used one for a very brief time and insisted she didn't want to live with one and had it removed. I was against this but said nothing. Mom lived for a few years without it. But, it wasn't ALS either. I always wanted my mom to try everything they had out there to keep her with me longer. But, sometimes it just comes down to what quality of life they want not necessarily the quantity. My dad has limb onset ALS and made his mind up right from the beginning that he won't get a feeding tube or a vent. But, many on here seem to have adjusted to the feeding tube quite well. I feel you should provide your mom with all the information you can on it but let the final decision be made totally by her and accept it. You then will have no regrets.
Take it one day at a time. You are doing the best you can. Sending you a hug, Kim

 

[designdiva]

Hi Angela,

Don't feel bad for venting, we have to blow off steam somehow! I just wanted to throw in my 2 cents on the feeding tube, the doctors said this week that my step dad only has a few months left if that... in the beginning he said he did not want a feeding tube but got to the point this past week where he was so tired of choking down nasty medications that it was more of a comfort measure for him than a life prolonging one. He has refused the bipap and vent and is ready 'to go' but I will say for me personally I am glad he got the feeding tube, I know it will not save him but I don't have to watch him try to choke down milk of mag, stool softeners, etc. and he is able to get whatever medicines he needs that way along with patches and shots for the heavier stuff. I would make sure your mom is educated on what the tube does, how it is placed, etc. so that she can have all the info before deciding.

Family is a whole other story, ALS is hard and I know for me it has turned my family upside down and inside out. Everyone does the best they can to cope in their own way and just try to remember that, even though the caregiving job is probably one of the hardest jobs anyone can do, it is not a permanent one. Sending some hugs your way!