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comfortermom

New member
Joined
Oct 16, 2008
Messages
6
Reason
CALS
Country
US
State
IN
City
NewCastle
So glad to finally have found this caregivers forum, so I can have a place to vent. Nobody else would ever understand. My daughter was diagnosed 11 years ago, when her daughters were ages 1 and 5. Doctors said she had 3 months to 5 years to live. I was envisioning those poor little girls growing up without their mommy. Well, we have been blessed, as she is still with us, and the daughters are now 12 and 16, and are the most loving and caring daughters. Mom has been a super mom to them, teaching them to cook, clean the house, decorate for holidays, do gardening..... They are going to be wonderful compassionate wives and mothers, themselves, someday.... because of all they have learned from their own mother.

For simplicity, I'll refer to my daughter as D.

D has lost all use of her arms and legs, and only has limited use of hand/finger. Barely enough to operate computer. She is in touch with others around the world with ALS, and they keep each other supported, comforted and informed. THis has been her lifeline.

D's husband works during the day, and daughters are in school. I live next door, so am the one who does any caregiving needed during the day. She doesn't need/want me to stay there all of the time... giving her a semblance of independence/privacy. When she is in her wheelchair and on the computer, she can just call when she needs me.

But most of the time, it tires her to stay in her chair all day, so she lays on the couch. When she does this, she has no way to move about, to get a drink, eat, change leg or arm positions, change tv channels. So I check in on her at regular inervals, and help her with lunch.

She has poor respiration, which is beginning to affect her speech. Getting out a few words is a real effort for her; which is beginning to make it hard for her to tell me what she need. I know this is frustrating for her, as it is upsetting to me.... not to understand her needs. My poor hearing further complicates the matter. Like she might say "hair". I push back her hair. She shakes her head no. I brush hair from around her eyes. No. I check the food. No hair on it. She had a hair on her lip, partly in her mouth. That kind of thing. Or she wants her hands in a certain position on her legs, or her toes are curled up on the pillow. Things that I know are a discomfort to her; but it is so hard for her to communicate those needs to me. Sometimes she is almost in tears from trying to get thru to me, and I'm about in tears, feeling so incompetant.

I won't go on any further today. This has been so long already. But I'll probably be back every day. So glad that I have found all of you. We are all in this together and are the only ones who truely understand. Thanks for being here.
 

Tanya

Member
Joined
Oct 12, 2008
Messages
11
Reason
Loved one DX
Country
US
State
Kansas
City
Weir
I just wanted to let you know that your posts to my other threads have given my heart a little lift. I will take on each day as a new one and worry about tommorrow when it comes. I wish nothing but peace and comfort for you and your family. Its hard to read things day in and day out about this disease and not feel completely helplessness and dread. You made me realize that I live and love my sil and she happens to have been diagnosed with ALS. I'll take the reality checks as they come, but, enjoy and cherish our time together. We do laugh alot together. God Bless you. Tanya
 

Debbie53

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Joined
Aug 16, 2008
Messages
86
Reason
Lost a loved one
Country
US
State
Colorado
City
Greeley
I empathise, too. My dad is never comfortable either, and can't ever really get that way, no matter what the aides or I try to do. He's also confused, whether it's medication or the disease. Today we're having one of those "official" conferences nursing homes have periodically on each resident. It'll probably last all of 15 minutes, time to resolve nothing. My attitude sucks right now, I know! Hopefully, my sister-in-law, who is great on her feet and not easily sidetracked, can make it. Keep your chin up!
 

Flowerpot

Active member
Joined
Aug 28, 2008
Messages
80
Reason
CALS
Country
UK
State
Tyne and Wear
City
Newcastle upon Tyne
I too have days when the levels of frustration between me and Mum are very hard to deal with - I'm afraid I come home and let off steam , which is hard for my children and OH.

Then we have lovely days and I can almost forget what she is going through and heading to.

kind regards

Flowerpot
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hi Mom- I am so glad you found us. I assume your daughter is already a member? A lot of families report that communicating is definately a big hurdle to overcome. Does she use any communication devices?
Anyway, I wanted to welcome you and thank you for deciding to joinus! Cindy
 
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Jeannie

Distinguished member
Joined
Dec 19, 2007
Messages
222
Reason
Loved one DX
Diagnosis
01/2008
Country
US
State
NJ
City
Vernon
Dear Comfortermom,
You sound so amazing. You and your daughter seem to have afabulous relationship. There are many comunication devises out there that might be able to help there are also word boards that might be easier for now.
I wish you the best and we are alsways here for you
In Friendship
Jeannie
 

comfortermom

New member
Joined
Oct 16, 2008
Messages
6
Reason
CALS
Country
US
State
IN
City
NewCastle
Where might I see one of the word board? I've been thinking of coming up with something, like in rows. One blink means first row across. 4 blinks means second command down: Move left leg. Drink. hair in mouth, etc.
 

paula-jane

Distinguished member
Joined
Feb 8, 2007
Messages
112
Reason
Lost a loved one
Country
CA
State
Ontario
City
Oakville
Word boards or alphabet boards are really helpful when trying to communicate. Word boards are basic words used in everyday life that can help trigger the caregivers mind/memory. Often just one word will communicate an entire thought when you become use to the system. The alphabet board allows the caregiver to know specific thoughts and words. Your daughter could spell out "hair mouth" etc.

She would not need to blink so many times. You could ask "this row?" and wait for one blink for yes... once the row is identified then you can move slowly across the letters. It is time consuming, but, it gives our loved ones the independence they crave to communicate.

I'm glad that you found your way here... there are so many people here to help and support you. We all have very different experiences with ALS and therefore the ideas that come forward are truly unique. 11 years with ALS... I can't even imagine that....

Paula
 

TanDaMay

New member
Joined
Oct 18, 2008
Messages
7
Reason
CALS
Diagnosis
01/1994
Country
US
State
Tx
City
Arlington
I answered the post about the letter board but where did it go -I bet I did something wrong

Please email me at my email address and I can send you a copy of my letter board - my daughter is 37 - I am her caregiver - MArcie was DX with ALS in 1994 when she was 23

the most used letters are first and so on down the line with about 5 letters in each row.

I would be glad go give anyone a copy of this letterborad - just ask

we also have a computer that read her eyes - if you live in Tex. you may be able to get it free

my email is: [email protected] put letter board in the subject line


- my blog - read about MArcie in the May '08 listings

Linda

http://linda-frances.blogspot.com/

Linda
 

comfortermom

New member
Joined
Oct 16, 2008
Messages
6
Reason
CALS
Country
US
State
IN
City
NewCastle
Thanks TanDaMay and others

Thanks for all your comments, and to TanDaMay for sending me a copy of the word/letter board. We are not to where we need it yet, but I saved it my ALS file and will have it if/when the time comes that we do.

I'd love to meet any of you who also care for a daughter. It's an experience unlike any other. I know we have much in common.
 

Thumbs Up

Active member
Joined
Nov 22, 2007
Messages
95
Reason
Lost a loved one
Country
ca
State
Ontario
City
Northern Bruce Peninsula
Im back, it has been awhile, I recall a day when my mom was trying to tell us something and we were all so frustrated, she kept pointing to her dresser. What she wanted was her dictionary. She looked up words to get her message across. It can't work all the time since it would be so tireing but maybe handy to have close by in certain situations and she also had a magic scratch pad and she would just write a word with her nail. Hope this helps someone.
 

hopingforthebest

Distinguished member
Joined
Feb 20, 2007
Messages
355
Diagnosis
02/2007
Country
US
State
NJ
City
Mays Landing
caring for our loved one

Dear Caregiver Mom:

I read your post and my heart smiled that your daughter is so blessed to have you right next door and to be a part of her life.

I care for my husband who, compared to your sweet daughter, has just started his journey with ALS. He has no use at all of his arms and his neck is very very weak. His breathing issues, diaphram affected and on bipap 20- 24 hrs a day.
I know the day will come and I pray he has many many years like D has had with you and her girls, that I might have difficulty communicating with him and he with me.

This forum is wonderful for us caregivers as we have a way to communicate with other caregivers. To give tips, support and just to have a shoulder to sometimes cry on.

I will look for your posts! Again, you are a wonderful, loving, caring Mom and doing a super super job! :)

Patty
 
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