First Message

[home again]

Hi Everyone. This is new for me. My mother was diagnosed with ALS in 08/2006. She lives in Florida and I'm in Michigan. She was just released from the hospital last week after receiving a PEG tube because she hadn't eaten in 3 days. She has lost all swallowing and speach function. I am in the process of moving her to Michigan so she can live with me, my hubby and children. I have a feeling that I may need support and some ideas in the coming weeks. Thanks to all for being there. I have received some great information already.

 

[Al]

Welcome home again. Jump in and ask any questions you may have.
AL.

 

[lunarruna]

Home Again...Your Mom is very lucky to have you. Good Luck with the move. Loss of speech is so hard...maybe the hardest thing with ALS.
You can use the 'search' tool at the top of the page and type in 'PEG Tube" or whatever and it wil bring up all the message archives on that topic...veyr helpful.
Cheers, Beth (CALS to husband Shannon, diagnoseded 8/04 ant age 40)

 

[Adele]

Hi Lunarruna & everyone...For me my mom's speech loss is one of the hardest things. But I feel that my mom was in denial for 8-9mo., two of which I was here with her. I don't think she'll ever come to terms with it & that scares me because I feel she won't leave this life with any peace of mind. The fear on her face haunts me. I don't know how to talk to her...don't know what to say...I always keep putting my foot in my mouth, saying all the wrong things...I feel so helpless...all I want to do is help her . Besides my shrink, I have no one to talk to about it, so I'm relieved that this site is here.

 

[MtPockets]

Welcome to the forum. I hope you will feel at home and know you are not alone in the battle. We are like a family here just trying to help each other deal with this terrible disease and make it through.


I know it's hard to come up with the right words at times in the midst of so much stress and pain. I just had to try to help my wife, who is my care giver, who this morning broke down crying and could not stop. She said she did not want anything to happen to me. What can you say in the face of such obvious hurt and fear of loss? All I could do was hug her, and let her know that we all have to die sometime, and God would give us both strength, grace, and peace, to make it through this to the end. After all HE is the great comforter. Without my faith in God I would be lost in the midst of this nightmare.

I hope you find the peace you seek and the wisdom to find the right words to comfort your loved ones.

Here is a hug for you.

God Bless
Capt AL

 

[Al]

Hi Adele. Welcome to the forum. I'm sure your mom knows how hard this is on you as well as her. I wouldn't worry about saving the wrong things. I'm sure that having you there means more to her than you realize. Take care.
AL.

 

[home again]

Hi Adele,

Thank you for your words of encouragement. With my mom's loss of speach, we tend to make light of it. When she asks me for something, I will tease her by putting my fingers in my ears and saying, " I cannot hear you!" My friend has a daughter with speach problems because of a high palate, I have told her that maybe when she gets here to Michigan, she will have someone that can understand her. If you Mom is a good typist or able to write well, we have found plenty of notebooks and a dry erase board are great things to have at her side.

Good luck to you and keep your chin up!

Home Again

 

[home again]

Thanks for your response Captain. It is a scary time, but with our faith and our sense of humor, I know we will get through. I'm glad this site is here; it's a great outlet. We put the bid on the house today, hopefully it is accepted and I can have my mom here by the end of April.

All my best to you and your wife.

Home Again

 

[Rhonda]

Hi Home Again,
Welcome to the forum, I am losing my speech also, I can feel what your mom is feeling. It is so very hard as a parent to lose your speech. 3 of my 4 children are own their own
and I have a 18 year old at home finishing his senior year. My kids try to include me in most of what they do and I'm glad but on the other hand it's hard, especially eating out.
It takes me a long time to eat and I don't drink much for the fear of choking. They would sit forever just to let me finish eating, most of the time I carry it home. Know that just being there means everything to her. I know my kids are here for me and it sure makes it easier. Hug her and tell her you love her every chance you get. I suffer over my children suffering over me. I'm sure she has those same feelings I think most of us do when it comes to our kids. I have ordered me a speech device through the clinic
with medicare B paying 80% and a MDA grant paying 20% so $0 for me. If she can type
that might be a option for her. You are a wonderful daughter to be taking such good care of your mom. Take care, Rhonda

 

[Adele]

Thank you for your support everyone, it's very much appreciated. I found out today that my mum has gone into a chronic care hospital. It's a very tricky situation I have with my family. I moved clear across Canada to be close to my mum, stayed with her for a couple of months yet because of my differences with my syepfather & I, I had to leave. I kept in contact by email & the occaisional visit but my stepfather didn't want me around much. He didn't even call me a week ago when she was put in the hospital. They have a son together & he's Autistic, pure joy he is but quite a handful. My mum let my half brother's care giver know that she wants to see me. My prayers have been answered in that regard & so I will be visiting her in a couple of hours from now. I'm a bit nervous because I don't want her to see me shocked. The last time I saw her I was...she'd lost so much weight & was on a feeding tube. Now she's in a wheelchair & unable to use her touch type/speech machine. So I guess it'll be me doing the talking. I miss her so much. I pray for her daily & each week at mass I light a candle for her. You will all be in my prayers also. God Bless, Adele

 

[liz]

Adele -

Remember that, no matter how your mother appears, her unconditional love for you is still there. That is something ALS cannot steal from us.

Liz

 

[Adele]

Thanks Liz...your'e so right. My mum was sleeping when I entered her room, but as soon as I said "Hi mum", her eyes opened & she turned to look at me & smiled. I saw so much love there. Despite her pain & her inability to communicate, I managed to brighten her spirits by telling her of my engagement & that next week I go for my first Holy Communion & become a bonafide Catholic....not bad first times for a middle-aged woman. She managed to use her touch screen communication device & tell me that she is happy for me & my fiance. Then she wanted to see the ring! At XMas I gave her a ceramic angel & was so pleased to see it in her room. Thanks guys for being so encouraging...I know there will be hard days ahead too & I look forward to sharing in your pain also. This is a very difficult journey & with God's love & this forum may we all travel together with His grace. Now I have to sit & digest all that's happened tonight. Sweet dreams, Adele

 

[home again]

Thanks Rhonda

My mom can type, and someone else has mentioned this speech device. Keep me informed on how it works for you. It may be something we can look into. Keep your chin up. You obviously have wonderful children that love you very much. I believe love can get you through anything. Good luck to you!

Home Again :-D

Hi Home Again,
Welcome to the forum, I am losing my speech also, I can feel what your mom is feeling. It is so very hard as a parent to lose your speech. 3 of my 4 children are own their own
and I have a 18 year old at home finishing his senior year. My kids try to include me in most of what they do and I'm glad but on the other hand it's hard, especially eating out.
It takes me a long time to eat and I don't drink much for the fear of choking. They would sit forever just to let me finish eating, most of the time I carry it home. Know that just being there means everything to her. I know my kids are here for me and it sure makes it easier. Hug her and tell her you love her every chance you get. I suffer over my children suffering over me. I'm sure she has those same feelings I think most of us do when it comes to our kids. I have ordered me a speech device through the clinic
with medicare B paying 80% and a MDA grant paying 20% so $0 for me. If she can type
that might be a option for her. You are a wonderful daughter to be taking such good care of your mom. Take care, Rhonda