my mom has this disease

[snowball]

Hi everyone
My names Sandra and I found out about 7 months ago that my mom has ALS.
We first noticed that her speech was slurry but we all thought it was because she needed new dentures. Well the new dentures came but the voice didn't come back with it.
Right now she's able to take care of herself, she has been having problems with eating though lately but I tell her its not a race and to take her time. She's walking and doing all her cleaning of the house herself, she's a neat person and wants to stay that way dont blame her. She doesn't want my help yet. She feels that she'll need it soon enough, and she say's u don't use what u have u lose what u have.
The question is......actually theres so many questions I told her on Sunday that I felt as lost as she was probably feeling but to know that I am her daughter and that we would figure out what we would have to do when the time came to figure out what we had to do. I just don't know I have no answers and my questions just worry. I alway's told mom if you want to die quick move in with me that made her laugh...but the thing was I'm serious about it. I don't want my mom in a place that will take care of her, but won't love her like i do, but I also don't know if I'm capable of taking care of her....so hard...anyway's so much for rambling just had to do it.

bye for now everyone

 

[Al]

Hi Sandra. Nice to meet you but sorry to see you here. Have you registered with the local ALS Society in your province? They offer a free Manual for Living with ALS. It may help you to decide if you can take care of your mom. From your description I think she has bulbar ALS. Is that correct? Most people do better in a home environment than an institution. If is at all possible I am sure she will feel better with you. Obviously you love her and want to take care of her. Call the society and the Community Care Access Center if there is one in your city. Register with them before you need them and have to make decisions that will affect you all. It is better to have time to think about the options. Hope this helps. I'm sure some others will be offering advice and encouragement. Take care.

 

[snowball]

Hi Al
thanks so much in replying to my post. Yes she does have bulbar, it's really hard being with her when she eats, I alway's get scared but I try to just eat my supper with her and let her focus on her's. I'm still getting used to not asking her something when were eating, lol that's a tuff one for me, since i'm alway's yakking about something. Ive read your story on here Al and u do have quite a sence of humor I like that in people.
I've mentioned to my mom about looking up services and stuff for her in the future so were not so overwelmed when the time comes for us to do something. Do u know roughly when u start to lose your walking and moving abilities Al? I know everyone is different and stuff but my mom seems to be doing pretty good at the moment but I know she pushes herself. She's pretty much trying to come to terms with not being able to take of my 8 yr old on summer holiday's.
She has alway's been his babysitter since he was an infant, and this is going to be hard on them both. I also work during the day Al so when the time comes and my mom needs more of me I won't be able to just quit my job. I'm also married just recently actually May 22 of this year, and my husband Ian would support me in any decission I have to make, but at the moment he's not in the country. He's in austraila, a very long but very romantic love story there My only sibling Kevin lives in Vancouver so he would help me and mom big time if he could. I feel really to tell u the truth helpless. My mom has always been my rock, I maybe 40 but I need my mom very badly, but I know I have to become strong now for her but it's hard to do when Ive never had to be strong for her....trying to figure out how to do that one is mind boggling....well enough with my rambling ahhhhhhhh a great life then a heart attack....what a beautiful way to go. Never thought I'd say that :shock:
bye Al......and hey say hi to your wife for me

 

[Elaine]

Hi Sandra,
I also have bulbar, in the beginning my speech was slurred and also chocked when I ate. Now I don't choke and sometimes my voice is not to bad and other day it's really bad....I think this als thing goes in stages.I'm losing alot of muscle in one hand but my legs are all right for now.I'm like your mom I like to do things by myself. I go to the clinic every three months,you should go,they have alot of good emotional and physical support at the clinics.Everyone is different when it comes to als. I don't think any of us know when we will loose the ability to walk.It's a slow progression .Remember to focus on now and just try and be yourself around your mom and let her do the things that make her happy.Stay strong. Elaine

 

[snowball]

Hi Elaine
Thankyou so much in replying to me
Ive told mom about this site that I found but she hasn't seen it yet.
I wish she had gotten a comp years ago so she would feel comfortable using one but she would just go pfft on it.
Ive got the phone numbers for the clinic and stuff but haven't phoned there or anything. Every Sunday I go to my moms for supper (she cooks sooooo good) so I'll tell her that I'm going to phone them for her.
She has another appt with her doctor in July I believe so maybe she'll know more then, about her progression.
And also my brother Kevin is comming to see us in the middle of May ( I can't wait!) he's alway's been the sensible one in the family, so I'm sure he'll help mom and I. It's hard for me to go to these places or phone these places since I work in the daytime and unfortunately I'm working for the money not just for something to do. So taking time of work is almost impossible. And with my husband out of the country at the moment it's even harder to save since he's supporting himself down there trying to support me down here and just every day costs of everything :evil: Thanks Elaine for your suggestions, they are good ones and I know we have to do them because I don't want mom and I waiting till the last moment for everything. She say's her doctor will tell her what to do when the moments right so not to worry so much.

Take care out there everyone and have a great day :!:

 

[Elaine]

Hi Sandra,You are very welcome.
I'm glad to hear your brother is coming for a visit,your mother will need all the support she can get.You're right about saying a heart attack is the best way to go.We all know, we don't get to choose.
I like to cook too,every Sunday we have our daughter and husband and of course our son for dinner.I know they all enjoy {mom's} cooking.
You should get your mom to read some of the posts.She might enjoy knowing that she's not alone with this terrible disease. There are many of us out there with als....Your mom will be able to relate to some of the feelings we all have. The forum is a great source of information for people with als. Also a good venting place.
Well I must go to bed and try to get some sleep. Stay strong , Elaine

 

[bear2]

Hi Snowball,

My dad was diagnosed with ALS 9 months ago. He too has the Bulbar form. His speech is pretty much gone now. He also has a great deal of difficulty chewing and swallowing. Sometimes you feel lost and helpless and just don't know what to do or what to suggest. This form of ALS seems to move very fast. The changes that have occured in the last few months are dramatic. The only thing that you can do is deal with each new hurdle as it comes along. It is a learning experience. As long as your Mom knows that you and your brother are there for her to help her through this the rest will work itself out. A caring support system seems to be probably the most effective means of coping with this disease. A lot of questions that arise and things that you are wondering about have already been posed on this forum. There is a wealth of knowledge and experience and information available on here. All you have to do is read the old postings and if you can't find something already on here there is a faithful gang who seem to be able to bolster your spirits and answer your questions in the blink of an eye. To each one of the members on this site I thank you for making sure that no one has to go through this alone.

Best to all,
bear2

 

[snowball]

Nice to meet u bear 2
Thankyou for taking the time out and reading my letters I appreciate it.
Yes your right the few people that I have met on here seem so nice and helpful and u don't feel as alone.
Well I went for my usual sunday supper....chicken parmisian and baked potato and veggies.....ah moms they're wonderful.
I kinda well straight out and told my mom, that when she couldn't walk anymore that it didn't nesisarily mean that she would be ready for a home and that she could live with me, that it would give me great comfort to have her in my house and have ME look after HER for a change. I mean after 40 years its about time I did something for her isn't it? Well anyway's to make a long story short, she said she would rather be in a home. Not because I couldn't take care of her I think it's because she thinks that it would be to hard on me and her in the long run. And also I think its because I am a newlywed and my husband isn't even in the country at the moment, and its not that she doesn't like him or anything at all, it's just I think that she thinks that she would be in the way.....Well that's just silly thinking on her part My husband would NEVER resent my mom being with us, if I thought he was like that I wouldn't of married someone like that in the first place....I mean it took me 40 yrs to find someone I knew was a great person in the first place ( first time married)....well I'm rambling again. I just had to write my thoughts down.

Everyone out there have a great day and a great life.....I plan on it no matter what hits me....I'm tuff and strong, but of course that's from being a woman in the first place :shock:

byeeeeeee :!:

 

[Al]

Hi Snowball I am Lee, Al's wife. This is my first time on the Forum. As a CALS I hope I can give you a little help. The comunity care access centre in your area should be able to fit your schedule into their appointments.
our operation here in Brampton is available from 8:30 am - 10:00 pm. seven days / week and hoidays. You can reach the ALS Society of Saskatchewan at 306-949-4100 Normanview Mall Regina SK or e-mail them at [email protected] or call 1-800-267-4257 and they will help you find the closest one to your home.
You can just leave them a message and they will contact you at home. Check with them? I believe the government has put into place some help, for people who work to get some assistence with time off for caregivers. Check with your Dr. about your mom's little saying 'if you don't use it you will lose it" I believe with ALS this is not always true. the same as "no pain no gain" This is not true for ALS. If you over use the muscles you may damage them even faster. She maybe should be looking at getting some help around the house for the heavier house cleaning. You may have to push her a little at first to talk to these people. I know I did. Al he kept saying "we don't need this yet". The ALS society told me that it is much easier to talk about all these things when you don't need them, then it is when you are desperate and needed them yesterday. The more steps ahead you are the easier it is. There is a lot of help out there. You do not have to do it all during working hrs. These people know your situation they will try to fit you in "just Ask". The best help out there is this Forum I know it has been the best thing for Al. The many friends we have made right here is unbelievable. Talk to you soon Good luck.
Lee

 

[TBear]

Ahh! The lovely and talented Lee... for a change:

You are right on. The people on my wife's "committee for care" generally anticipated what equipment/help we would need long before we did. Some stuff we really didn't need as we learned to adapt without it... but other stuff we did. They are very helpful. (I ended up using her hoyer lift to pull the engine out of my jeep)

Snowball... welcome to this fine collection of misfits and good luck with your mom... anyone who can do chicken parmesan needs to be kept close. If she thinks that she's too much trouble tell her she can do the cookin'.

CHeers

T.

 

[snowball]

Hi all good morning

Lee thanks for the phone #'s to help mom and I out, I found the # thats in my area so when I get up the courage and tell my mom then I'll phone.
and T bear really good idea darn she can do the cooking lol.

Have a great day everyone!

Sandra

 

[me]

Sandra - yes, have her cook, that would probably make her feel useful at the same time! Good to have you with our group.

Lee - So glad you joined in. It is good to hear a spouse's perspective on this journey. You sound like an awesome woman!

melissa

 

[Al]

I am her husband of 35 years on May 16 and yes she is awesome. I think they threw away the mould when they made her. I wouldn't be able to get through this without her. She is a sweetie. I tell her I love her at least once a day or more and I mean it.

 

[Mike27]

Hi Snowball, you mom sounds like one tough lady!
You've probably seen this but I thought I would put it here anyway:

http://www.als.ca/als_manuals.aspx

At the bottom of the page you can download the latest manual for dealing with this disease. I haven't gone all the way through yet but it seems pretty good! They have an area that includes coping strategies for family.

Hope this helps in some way. The ALS family is large, but always here for each other!

Now...how 'bout a chicken parmesan recipe from your mom? I love it!

Cheers!

 

[snowball]

Hi mike27

Yes I've seen that page, and Ive read it over and over and over, as I'm sure u can well imagine.

Then I think if I spend so much time thinking about this terrible diease, I wonder just how much time my mom must think of it........

and about the chicken recipe....sorry you could never duplicate it. Its made with my moms special love.

Have a great day all.

and its been so nice to meet all of you

Sandra