scaredwifetx

Hello

My mane is Daniella. My wonderful mother in law was Laura (Fionae). I noticed your messages to her sent with kind words and with love. Sadly though, she passed away at the end of September. She passed peacefully and was not alone. I wanted to reach out to say thank you with every ounce of love I have to you. This forum and the people who helped her with advice and friendship ment so much to her. It gave her strength and comfort. She was more prepared when going to the doctors and asking questions on ideas that can help her based on what she learned here from wonderful people like yourself. Thank you for being you. Thank you for supporting Laura. Thank you for sending her love most of all. You were a part of Team Laura : ) I wish you every happiness in your life and in your families. Laura sends you her love. --Daniella

Huh, it looks like all my threads are still here but I will poke around and see.

novel, no worries. Good to 'talk'.

#4 Not in need of any online dating....HAHAHAH. If I can't come upon it the old fashioned way, won't be happening. Fully aware of all the nuts out there. Companionship is one thing...putting myself in a situation where I could potentially have to go thru this again with someone else...I'll have to give that a great amount of thought. Large commitment to sign on to do what I just did...what you are doing now...don't know that I'm game for such a commitment, might not ever be. I guess if you found the right one again you'd know it...the old fashioned way...

Have a super day. Keep digging girl, you can do it...even though lots of days you don't think you can. If you can bungee jump, you can do anything!! (You can do all that for me!)

#3 It got to be the day to leave...that morning...and I was near the point of calling it too dangerous...don't need to be doing this, not worth it... She cried and cried and was so distraught that I couldn't say no...just loaded up and headed out. She wasn't mad like she has been at me sooo many times over the years..(hahah), she was just so terribly disappointed that I was not gonna allow that. I was going to take her there irregardless. Kills me now to recall that...sorry. I would give anything to have the opportunity to take her ANYWHERE again... Does Steve look forward to clinic? How did it go? You know, they know from the beginning that their breathing will be their undoing, so I can only imagine how that feels and affects their minds/thoughts when those problems begin.

#2 Tracy always looked so forward to clinic. I dreaded it. It was reality in its most raw form, or seemed that way looking back. The people were nice and all, and I know you know...but just seeing it all seemed brutal. I guess Tracy liked it so much because of the attention...it was all about her when there...and all the folks there want to help as much as they can, even knowing that help just goes so far... There was one time when clinic was during the winter and it had come a big snow and ice storm between here and Dallas...and it was even in Dallas.

#1 Gotta go the lake...irregardless of all. That is one of my 'happy' places. We have had a place at Lake Ivie, near Ballinger, for 15+ years. Raised the kids going there at every opportunity...it was our vacation place. As the kids got older, it became just me and my best friend and fishing partner for the last several years who went there the most. Fishing, cocktails, and dominoes...lots of em. He died from cancer July 2. Spread some of his ashes there this weekend with his son and his wife, along with some other fishing friends. Good time for such a sh##ty thing to get to do. Losing Tracy and Layne within months of each other has been real hard...he helped me while Tracy was sick...gave me support and someone to talk to, cry with, etc. Seems like when I started poking out of that, he was on his way out too. I hate cancer too.

Hiii Deb! Thanks for checking on me. I have been at the lake since Thursday, maaannnn has it been a beautiful last few days or what?? I am doing ok to good, depending on what day and time it is!! It seems to change but mainly good. Going forth, learning how to do lots of things alone...haven't been single in a long time...28 yrs to be exact...gave me a whole new respect for some of my buddies who have been single...definitely not used to it, having to re-learn. It has its perks from time to time, but overall...being alone stinks most of the time. Good thing the kids are closeby and other family, so its really not bad like some folks ....just not what I'm used to and comfortable with...taking some serious getting used to.
How are you making it??? That is more important than me. I hate ALS. Let me know if you need anything I can help with. I know I can't say anything to help...but I am here for you, if you need a listener for sure.

i started a thread last december stating how and where u could get rch4 for free. you posted on that thread, so you were aware of it. u could have gotten it then.

Hope Dr Heitzman gets you some help where you need it...Tracy loved him. The folks at the clinic were always really helpful to us...but most of the help was hooking us up with the right people at home as we drove from Lubbock to see them. The speech gal is the one who helped us get the eyegaze computer. On the other hand, i know they see a lot of people and its probably hard to give the same kind of care to everyone...lots of needs...few answers. Anyways...thinking of yall and you.

tc

Hi Deb

You making it okay? Just checking in, thinking about you. Have a good Friday. Hugs.

tc

Hi Deborah,
Thanks again for reaching out. I have absolutely no one that is in this situation that could possibly relate. I feel utterly alone,. It has to be the hardest thing I have ever done.
Is your Steve still working? My Steve is. Everything is functioning so he is driving a car and going to work every day. He is basically experiencing all the same your husband is.
Do you have children to? My twins are 7 year old girls. I feel they are too young to try to explain this to them right now.
Is your husband willing to do whatever it takes to keep going, i.e. wheelchair lifestyle? My husband has stated he “never wants to be a burden to anyone”. And has expressed zero desire to be prepared for what might happen next. Ugh. What does that all mean?!
Thanks for being there and listening and sharing. I can’t tell you enough how much I appreciate it.
Lisa Benecke

Hi! Tx I so much for your note. Oddly my husbands name is steve also. He just turned 52. I've also lived outside of Dallas in Richatdson!! Your words out of any others hit home and comforting. Is it possible to here or offline via email? I'd love to ask a few more questions of you. I am desperate to talk to someone out there in a parallel situation if that is even possible. When you say hate change what does look like? Is gate change the first to notice before say a slip and fall? I like your user name as I am too a scared wife but in Massachusetts. Would love to keep in touch as a fellow caregiver. Really wonder how close in similarities our situation is! Thank you so much again! Lisa

I am happy that you have someone you can spend time with. No need to know what you want or where you are going right now.

I am not sure anyone will ever put up with my independence like Steve does so I will be in trouble.

and it IS hard to come here...but comforting in a way too....talking to you few I know. The hard part is that it just doesnt stop...newbies keep coming aboard...and others keep leaving. Im sorry about how that affects you too. This sucks beyond description.