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Summer07

New member
Joined
Jul 24, 2007
Messages
2
Reason
CALS
Country
Finland
State
Finland
City
Helsinki
Dear everyone,

I'm so glad I found this forum -- since doing so a couple of days ago I've been reading through your posts and getting lots of helpful information and comfort. What I've been missing, so much, these past months is interaction with people in the situation I and my family are in.

I am a young woman whose beloved mother was diagnosed with bulbar ALS last autumn, after a long period of uncertainty and false diagnoses. Mom's ability to speak disappeared altogether by Christmas, and then slowly the other symptoms started. Now she is in quite a weak condition and it's heartbreaking to see her change for the worse every time I see her.

I live in a different town and try to visit my parents as often as I can, but due to work, I have only managed weekly visits. My father is strong and takes care of mom patiently and bravely... but one of my current biggest grounds for worry is that I can't seem to get enough information on my mom's condition and my parents' possible plans for treatment etc. I wonder if it's me who's afraid of knowing too much or if my dad is trying to protect me (guess this reveals something about my relationship with my dad; close but slightly formal, not very deep). When I'm there, I take care of mom as well as I can and with dad's instructions, but with him we try to keep conversation light and maybe even joke around like normal. Perhaps hoping that would lift mom's mood somewhat. And there may have been a time or two when dad has kind of snapped at me a little when I've asked too many questions about the disease.

Until a couple of months or so ago, my mom was able to email me, so that way I had some insight into her emotions and thoughts. Now she's not emailing or texting anymore, and also has trouble using her communicator device (where she types in words and a machine voice repeats them) -- last weekend I also noticed she no longer remembers the simplest words. She wanted me to do her nails but couldn't get the word right, and it took me a while to guess what she wanted. That happened with other things too.

I feel so lost. With mom's lack of facial expressions and her nowadays limited ability to produce words, I can no longer seem to have any reciprocal communication with mom. I miss her so much... I know she's there, which is a blessing, but how I wish I could have just one conversation with her, like we used to.

Now that I'm reading through this text, it seems so selfish... as if what's going on is all about me. Sorry about that, I'm a little confused :? , and please, if you wish to share your thougths about changed family dynamics and the difficulty of bringing up scary things, I'd love to read them.

Love from
Summer
 

liz

Senior member
Joined
Nov 9, 2006
Messages
642
Reason
PALS
Diagnosis
11/2006
Country
US
State
NY
City
Albany
Your post is not selfish, Summer. You had a lot to get out. Now that you've found the forum, you have a place to vent and share experiences. Welcome. :)

Liz
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
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Learn about ALS
Country
US
State
New England
City
Anytown
I agree with Liz, Summer. This is a place for venting and asking anyhting that is on your mind. I hope we will be able to help you with what is going on with your Mom. One thing that came to mind is that it is possible your Dad my not be keeping things from you. He and Mom probably know what to expect if they have sighned up with their local ALS or MD chapter. And if she has not been seen by her local ALS clinic she should go there right away. They will have information on what to expect, services to which she may be entitled, and support groups for all of you. Best wishes, Cindy
 

Icanmanz

Senior member
Joined
Jul 14, 2007
Messages
947
Reason
PALS
Country
Uni
State
Texas
City
Tomball
Summer07 said:
Dear everyone,

I'm so glad I found this forum -- since doing so a couple of days ago I've been reading through your posts and getting lots of helpful information and comfort. What I've been missing, so much, these past months is interaction with people in the situation I and my family are in.

I am a young woman whose beloved mother was diagnosed with bulbar ALS last autumn, after a long period of uncertainty and false diagnoses. Mom's ability to speak disappeared altogether by Christmas, and then slowly the other symptoms started. Now she is in quite a weak condition and it's heartbreaking to see her change for the worse every time I see her.

I live in a different town and try to visit my parents as often as I can, but due to work, I have only managed weekly visits. My father is strong and takes care of mom patiently and bravely... but one of my current biggest grounds for worry is that I can't seem to get enough information on my mom's condition and my parents' possible plans for treatment etc. I wonder if it's me who's afraid of knowing too much or if my dad is trying to protect me (guess this reveals something about my relationship with my dad; close but slightly formal, not very deep). When I'm there, I take care of mom as well as I can and with dad's instructions, but with him we try to keep conversation light and maybe even joke around like normal. Perhaps hoping that would lift mom's mood somewhat. And there may have been a time or two when dad has kind of snapped at me a little when I've asked too many questions about the disease.

Until a couple of months or so ago, my mom was able to email me, so that way I had some insight into her emotions and thoughts. Now she's not emailing or texting anymore, and also has trouble using her communicator device (where she types in words and a machine voice repeats them) -- last weekend I also noticed she no longer remembers the simplest words. She wanted me to do her nails but couldn't get the word right, and it took me a while to guess what she wanted. That happened with other things too.

I feel so lost. With mom's lack of facial expressions and her nowadays limited ability to produce words, I can no longer seem to have any reciprocal communication with mom. I miss her so much... I know she's there, which is a blessing, but how I wish I could have just one conversation with her, like we used to.

Now that I'm reading through this text, it seems so selfish... as if what's going on is all about me. Sorry about that, I'm a little confused :? , and please, if you wish to share your thougths about changed family dynamics and the difficulty of bringing up scary things, I'd love to read them.

Love from
Summer

Summer, please don't look at yourself as being selfish, because you are not. You love your mother very, very much, and the changes in her due to als is killing you. I know, because it happened to me. My son, 38 yrs, just passed from als on 06-03-02. I still miss him very, very much. I have turned his bedroom into a shrine, I sleep in that bedroom, and refuse to leave. My story is a long one. I went through so much, I do not feel selfish, as I am fixing to say that my son went through a lot, too! To tell you the truth, I died the day my son told me he had als. It is such a long, and heartbreaking journey. I hope you stay on this forum, ask me anything, no matter what, and I will answer your questions to the best of my ability.

I have to sign off for a while, but I will be back. May God bless you. There are a few questions though, It seems to me that your mpm's illness is advanced, does she have a feeding tube. If she has that speaking device, the peg should have come first. Please let me know! We care, and we would love to give you some support!

xoxoxo,
Irma
 

Lorie

Senior member
Joined
May 17, 2007
Messages
546
Reason
Loved one DX
Country
Uni
State
Alabama
City
Mobile
This Is A Wonderful Place

Summer, this is a wonderful place. There are great people on this Forum, they are a lot like family. You can ask questions, Get Information, Vent or just get Support. And a lot of Inspiration! I am sorry that you have to experience what your Mom is going through.
She needs all the Love and Support she can get. Its the hardest disease I have ever had to be a part of. And I have been through a lot. Diseases, Death, Tragidies!

Like Mother Theresa said:

"God will only put on you what you can bare!(if he just did not have so much faith in us"). She got that right, for sure!

We are here for you!

I Love the People here! By the way, all of you are extrodinary!

Lorie:-D
 

Summer07

New member
Joined
Jul 24, 2007
Messages
2
Reason
CALS
Country
Finland
State
Finland
City
Helsinki
Thank you so much for your sympathies, everyone. I can just feel that this is a wonderful, caring, intelligent community.

Lorie, that quote says it all, doesn't it? I wouldn't have thought something like this is bearable, but here we are, managing from day to day.

Icanmanz, thank you for your kind words and I am truly sorry for your loss. To answer your question: I have been thinking back to a very worrying conversation I had with my Mom a while ago, when she'd been diagnosed and was just home from a patient / caregiver course. She told me she will refuse a feeding tube or a respirator. I don't know if these are decisions she has made, or if she is actually allowed to do so... to decide not to.

Thank you CindyM, I am so happy to have found all of you. Yes, Mom is being treated by a clinic in her hometown, so that they probably - definitely - know what's to come.

Thanks so much, liz!

Love from
Summer
 

The Sass

Member
Joined
Jul 12, 2007
Messages
21
Reason
CALS
Country
US
State
Texas
City
Frisco
Summer,
Your situation sounds very much like my own. My mom was diagnosised with Bulbar ALS last July. No speech my Christmas, peg tube in March and now in a wheelchair. My dad also is the primary daily caregiver and I spend a couple of days a week with them to relieve him and do housework. The best thing you can do is arm yourself with as much information as possible. This forum will provide you lost of tips. My advice would be try to stay one step ahead of the disease in preparedness because you never know how fast certain things will progress.
Sass
 

trustinggod

Distinguished member
Joined
Oct 21, 2006
Messages
154
Reason
Lost a loved one
Country
US
State
CA
City
Lake Forest
Summer,

Welcome to the group. This is a very unique gathering of special people willing to listen, share, laugh and cry together in response to the daily struggles with ALS.

I think that learning as much as you can about the disease will help you to have a better understanding of what is happening now and what will be happening in the future. You can read the postings on this forum regarding what to expect in the future as well as reading the great information posted on the ALS web site . You can also ask specific questions here on this forum. I remember when I first came here last fall looking for answers to my questions -- the information, as well as kind words of support that I received, helped me more than I could ever find words to express.

In so far as wanting to have conversations with your mom, don't stop talking to her just because she cannot respond with her voice. Talk to her just like you would if she could talk back to you. Don't be afraid to tell her how you feel or how scared you are. If she cannot lift her arms to give you a hug -- lift them for her and put them around your shoulders as you hug her. You know her best . . . follow your heart. I make these suggestions because I was there with my friend every day the last year of her life as she gradually lost her ability to move and talk and when her friends and family stopped touching her and talking to her because she could not respond she'd tell me that pain was worse than anything ALS had caused her. Many times she'd say "please lift my arms and help me hug you" or "please talk to me and watch my eyes for a response".
She also loved to have music played and some of us singing along with it. Oftentimes we could tell by her fingers that she was keeping time to the music and if we listened carefully we could hear her humming along. This is how she left this world -- loved ones gathered around her bed softly singing along with her much loved Christian praise songs, and her, quietly humming along, then gently, peacefully slipping away to meet her Saviour in Heaven.

Jeanne
 

Icanmanz

Senior member
Joined
Jul 14, 2007
Messages
947
Reason
PALS
Country
Uni
State
Texas
City
Tomball
trustinggod said:
Summer,

Welcome to the group. This is a very unique gathering of special people willing to listen, share, laugh and cry together in response to the daily struggles with ALS.

I think that learning as much as you can about the disease will help you to have a better understanding of what is happening now and what will be happening in the future. You can read the postings on this forum regarding what to expect in the future as well as reading the great information posted on the ALS web site . You can also ask specific questions here on this forum. I remember when I first came here last fall looking for answers to my questions -- the information, as well as kind words of support that I received, helped me more than I could ever find words to express.

In so far as wanting to have conversations with your mom, don't stop talking to her just because she cannot respond with her voice. Talk to her just like you would if she could talk back to you. Don't be afraid to tell her how you feel or how scared you are. If she cannot lift her arms to give you a hug -- lift them for her and put them around your shoulders as you hug her. You know her best . . . follow your heart. I make these suggestions because I was there with my friend every day the last year of her life as she gradually lost her ability to move and talk and when her friends and family stopped touching her and talking to her because she could not respond she'd tell me that pain was worse than anything ALS had caused her. Many times she'd say "please lift my arms and help me hug you" or "please talk to me and watch my eyes for a response".
She also loved to have music played and some of us singing along with it. Oftentimes we could tell by her fingers that she was keeping time to the music and if we listened carefully we could hear her humming along. This is how she left this world -- loved ones gathered around her bed softly singing along with her much loved Christian praise songs, and her, quietly humming along, then gently, peacefully slipping away to meet her Saviour in Heaven.

Jeanne



Jeanne, you are such a wonderful person, with such a kind heart. May God bless you, and your family.
 
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