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ladyfalc

New member
Joined
Mar 7, 2008
Messages
1
Reason
CALS
Diagnosis
02/2008
Country
US
State
IL
City
Lindenhurst
Hi

My mom was diagnosed 1/08. Bulbar symptoms started 6/07. We have been doing what we can to cope. My dad passed away 5 years ago. My mom still lives alone - a position that is threatened more and more every day. We are currently searching for someone to live-in with her as she does not want to go nor do we want her to go to a nursing home/facility. I have 2 sisters and a brother, although most of the responsibility comes to me - which is fine but hard sometimes. I live 45 minutes away from her. I drive up when I can but I have 2 kids and it is hard sometimes. Fortunately, she is still able to drive and comes down to me often to stay for extended weekends. My kids are wonderful with her. Isn't it amazing how kids can adapt to things? I just worry about them and her as she worsens... Obviously, this arrangement won't work for long. My mom and I are very, very close - we had become so much closer after my dad died which I SO appreciate now.

I can't believe how cruel and terrible this disease is! It is unthinkable to see such a strong, independent woman completely fall apart before your eyes. It seems that she is progressing much more rapidly now! She can hardly talk. A little while back, at least I could understand most of what she said. Now that is gone. She is getting weaker but she can still walk, drive and pretty much take care of herself. She is telling me she is getting scared and feeling vulnerable which devestates me. She sometimes wakes up with too much phlegm in her throat that she can't cough up and can't catch her breath. We have a suction machine being delivered to her today. She also has a feeding tube of course as eating is almost impossible.

I feel that this is just a hopeless chasing act. Each time this horrible disease reaches a new level and affects our loved ones in a different way - we scramble to try and give them the quality of life they so deserve. It makes me start to question my faith - which is very upsetting. How can God let people suffer like this! It is so unfair and cruel. I have been quietly reading posts on this site for a while. You all offer so much support and assistance. It is a wonderful, comforting place to be. I thought I'd share a bit of our story. My heart goes out to all affected by this terrible disease.

- Maggie
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi Maggie. Sorry about your mom. I hope some of the others here can suggest some options for you. We have members in Il. so they might be familiar with what's available. Take care.

AL.
 

Jeannie

Distinguished member
Joined
Dec 19, 2007
Messages
222
Reason
Loved one DX
Diagnosis
01/2008
Country
US
State
NJ
City
Vernon
Dear Maggie,
I am so sorry that your Mom was diagnosed. You are correct that this is a horrific disease.
Does your mom have anyone close by that could come check on her dailey? Possibly someone in a church grouP? Possibly even hiring a home aide or companion.
My heart is breaking for you as we are going through the same thing.
You will find the love and support you need on this forum, these people are wonderful. In Friendship
Jeannie
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hi Maggie- I am so sorry this is happening to your family. Jeanne and AL are right: you will get lots of support here. If you have the time, you might try learning all you can about how to care for your Mom. Eventually I hope you will find others willing to take on certain tasks, as you will not be able to do it all alone. This site is a good place to start: there are discussions on every topic and every aspect of the disease.

Cordially, Cindy
 

Thee General

New member
Joined
Jul 6, 2008
Messages
6
Reason
CALS
Diagnosis
3/2007
Country
US
State
Ca.
City
Fort Jones
Hi Maggie

I'm sorry your mom is going through this it's great she has you and is able to drive still.

My husband was diagnosed in March 07, he hasn't drove for awhile now and can't do much of
anything easy.

He also has the phelgm and has found something to help him. He had to get a perscription from the doc. and it's called Scopolamine ( transderm). It's a patch you put behind your ear and wear it for 3 days. It works wonders but there are some side effects.

I hope this will help her and good luck.

Linda
 

brooksea

Legendary member
Joined
Sep 27, 2006
Messages
5,171
Reason
Other
Country
HM
Maggie,

I'm very sorry about your mother!

Please know that we will try to support you and comfort you in this journey!
 

Flowerpot

Active member
Joined
Aug 28, 2008
Messages
80
Reason
CALS
Country
UK
State
Tyne and Wear
City
Newcastle upon Tyne
Hi

Hi Maggie

i have just posted for the first time too - and I really empathise with you as my sister and I are currently doing a 2 hour round trip each day on top of work. We have managed to find her a lovely nursing home not far from us ( 20 minute round trip - big difference !), so that might be an option for you ?

kind regards

Flowerpot
 

Flowerpot

Active member
Joined
Aug 28, 2008
Messages
80
Reason
CALS
Country
UK
State
Tyne and Wear
City
Newcastle upon Tyne
I meant to say...

Maggie

I know you don't want a nursing home for your Mum , neither did we but the rehab centre she is currently attending involved us every step of the way. We can still help care for her and share meals with her . My children are welcome and they even have a games rooms for them .


The nursing home we have chosen together has a quiet room and we are still able to be involved as we are now. It is very expensive but the way Mum looks at it is this - she has little else to spend her money on and would rather be in a place where we are all welcomed and catered for.

Nothing is an easy choice but my sister and I did the investigations and Mum chose the option out of all avenues , and made her decision.

Hope this helps ?
 

Debbie53

Active member
Joined
Aug 16, 2008
Messages
86
Reason
Lost a loved one
Country
US
State
Colorado
City
Greeley
Maggie,

Yes, it is a terribly cruel disease. And just keeps taking away, bit by bit. I keep thinking I'll wake up and it will all have been a bad dream.

Debbie
 
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