Old 01-20-2014, 03:47 PM #1
KareninDixie's Avatar
KareninDixie KareninDixie is offline
New Member (Say Hi)
 
Join Date: 2014
City: Loganville
State: GA
Country: US
Interest: I am a family member of someone with ALS/MND.
Posts: 4
KareninDixie is on a distinguished road
KareninDixie KareninDixie is offline
New Member (Say Hi)
KareninDixie's Avatar
Join Date: 2014
City: Loganville
State: GA
Country: US
Interest: I am a family member of someone with ALS/MND.
Posts: 4
KareninDixie is on a distinguished road
Exclamation My mother has ALS

Hi all. My mother, age 72, was diagnosed with ALS about a year ago, after several years of tests that showed nothing. It started with a knee replacement surgery that she had. About six-months post-op, her right foot started dropping, and she could not control it. Her doctors initially thought it was related to diabetes, but eventually moved on to neurological testing. Because she exhibited no pain, they didn't think it was ALS. Still, it took about 3 years before they got the right diagnosis, after attempting chemotherapy and gammaglobulin treatments to no avail. I am the eldest child of five, and I'm ashamed to say that I've been avoiding going to see her. Not on purpose, I was getting physically ill. I didn't associate the two until last week. My mother is my hero, and has been for my whole life. She is the one who made me who I am, and stood by me no matter what. She is the one who told me I could do anything, and instilled that belief into my heart and mind. Watching her slip awaylike this is breaking my heart. I know this is not about me. I finally melted down last week. I had been trying to control an uncontrollable situation by blocking it out. It's not that I never went over there, it's that I didn't go as often as I could have. That wall tumbled when I had a panic attack last week (coincidentally, my father, and two sisters broke down the same day). I'm spending time with her now. Dad is on the verge of a complete breakdown, and refuses to take the Ativan his doctor has prescribed. Without it, he is not sleeping and is deteriorating rapidly. I have an appointment this week to see if my doctor will help me with something short term, while I get a grip on the realities of our situation. Her doctors want to put in a feeding tube this Friday, and have warned us that with her breathing issues, she may not make it through the surgery, although it is supposed to be a relatively simple procedure. How can I support my family through this? I've always been the leader, the one in control, and I just don't know what to do this time. What is the best way to help Dad? Any suggestions on how to get him to take his medicine? Is anyone else out there in a similar situation, and could offer some advice? Thank you so much to anyone who has the time to respond. I'll be leaving work shortly and heading over to her house.
KareninDixie is offline  
Old 01-20-2014, 05:19 PM #2
skipper66's Avatar
skipper66 skipper66 is offline
Very Helpful Member
 
Join Date: 2012
City: SMALL TOWN IN
State: ILLINOIS
Country: US
Interest: I lost a loved one to ALS/MND.
Posts: 1,478
skipper66 is on a very distinguished road
skipper66 skipper66 is offline
Very Helpful Member
skipper66's Avatar
Join Date: 2012
City: SMALL TOWN IN
State: ILLINOIS
Country: US
Interest: I lost a loved one to ALS/MND.
Posts: 1,478
skipper66 is on a very distinguished road
Default Re: My mother has ALS

Please see a counselor to help you deal with all this. They might put you on a low dose of a antidpressant temporaily. Seek a therapist out. They can help you even more then we can. Also, put in pegs or feeding tubes in your search thread. It should pull up some good information for you. Plus, others on here would be glad to answer your questions about it. Is there a support group where you live for ALS? Kim
skipper66 is offline  
Old 01-20-2014, 05:26 PM #3
affected's Avatar
affected affected is offline
Extremely Helpful Member
 
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 11,461
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
affected affected is offline
Extremely Helpful Member
affected's Avatar
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 11,461
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
Default Re: My mother has ALS

I'm so sorry for your mothers diagnosis and the awful impact on your family, and on you. Never feel guilty that you also are affected by this disease and are going through enormous grieving yourself.

Sure, in front of family you may need to show some strength and become capable, but this is a place where you can safely share how you are feeling inside. We will try to support you and even give a little advice.

My husband is my PALS, so I am not in quite the same situation. I had no choice but to face up to it all and right quickly as our children are all grown and out of home, so it was him and me.

I think that your best starting point is to get some counselling for yourself, and start trying to spend some time helping your dad out. No matter how heart breaking it is to watch this disease (believe me my heart breaks all over again every single day), you will hopefully find some kind of comfort for yourself in getting involved.

I know that I CHOOSE to be here every single day looking after my husband, no matter how awful it is, and that helps me. I'm not trapped here, I want to do this for him.

I strongly believe however that we all work out our own path, I can say things that help me cope, but you will find your own way of coping, and that will be right for you.

I hope the peg insertion goes OK, the breathing is an issue, but hopefully they are competent and understand how to handle her situation. Using the peg is so easy, honestly. We've had a peg for 3 months now.

Keep posting here, everything changes and we have to keep adapting and support is so important, don't be afraid to ask for it. Personally, I find that supporting others back gives me some sense of relief. We are not alone, others are coping to varying degrees day by day, and that is a help to me.

Tillie xxx
affected is offline  
Old 01-20-2014, 08:04 PM #4
Santa joe Santa joe is offline
Senior Member
 
Join Date: 2013
City: Goose Creek
State: South Carolina
Country: US
Diagnosed: 02/2012
Interest: I lost a loved one to ALS/MND.
Posts: 637
Santa joe is on a distinguished road
Santa joe Santa joe is offline
Senior Member
Join Date: 2013
City: Goose Creek
State: South Carolina
Country: US
Diagnosed: 02/2012
Interest: I lost a loved one to ALS/MND.
Posts: 637
Santa joe is on a distinguished road
Default Re: My mother has ALS

At first you cry. Al least that's what I did. Nothing upsets my husband more than to see me crying. I try to limit my tears to when I take a shower. I call it "my shower of tears". What you are experiencing is normal and we are all here for you. I had to put on my "big girl panties" and realize this man I love has ALS and I was committed to him. As hard as it is, try to treat your mom the same way you did before ALS. You are probably a lot stronger than you could ever imagine. Be there for your mom and dad. That's all you can do.
Santa joe is offline  
Old 01-20-2014, 11:52 PM #5
Arobertson1 Arobertson1 is offline
New Member (Say Hi)
 
Join Date: 2014
City: Dallas
State: Texas
Country: US
Interest: I am a family member of someone with ALS/MND.
Posts: 5
Arobertson1 is on a distinguished road
Arobertson1 Arobertson1 is offline
New Member (Say Hi)
Join Date: 2014
City: Dallas
State: Texas
Country: US
Interest: I am a family member of someone with ALS/MND.
Posts: 5
Arobertson1 is on a distinguished road
Default Re: My mother has ALS

I agree with all the above....just be there in any way you can! My dad has had ALS for over 3 yrs and is on feeding tube and vent....it's not easy but it's sure nice to know we have each other! Will be praying for her peg surgery....it should take hardly any time at all.

Aimee
Arobertson1 is offline  
Old 01-21-2014, 09:37 PM #6
Barbie's Avatar
Barbie Barbie is offline
Extremely Helpful Member
 
Join Date: 2007
City: orlando
State: FL
Country: US
Diagnosed: 01/2007
Interest: I lost a loved one to ALS/MND.
Posts: 2,659
Barbie is a jewel in the roughBarbie is a jewel in the roughBarbie is a jewel in the rough
Barbie Barbie is offline
Extremely Helpful Member
Barbie's Avatar
Join Date: 2007
City: orlando
State: FL
Country: US
Diagnosed: 01/2007
Interest: I lost a loved one to ALS/MND.
Posts: 2,659
Barbie is a jewel in the roughBarbie is a jewel in the roughBarbie is a jewel in the rough
Default Re: My mother has ALS

it is so hard! your family needs you and you can't avoid the situation. It is ok to cry--but like it was said above, you HAVE to put on your big girl panties and step up. Glad you are seeing your doc, but it takes a month fro the antidepressants to fully kick in. (they are a BIG help though). get your dad to take his--sounds like he is falling apart. in my experience on this forum, older men have a really hard time dealing emotionally with their wife PALs. get the kids organized--everyone with a job and spread the work around. make sure he is getting meals and help with her care. if someone needs to move in that would be really helpful. you can hand him his pills-remind-him that he needs to be functioning to be his best so he can help her.

I would also suggest you tell you mom what you told us. that was beautiful and any mom would love to hear that.

You will never regret helping out. but if you don't get it together soon you will have regret. time passes quickly with ALS.
Barbie is offline  
Old 01-28-2014, 01:53 PM #7
mysticunicorn66's Avatar
mysticunicorn66 mysticunicorn66 is offline
Member
 
Join Date: 2008
City: Allegany County
State: MD
Country: US
Interest: I am a family member of someone with ALS/MND.
Posts: 241
mysticunicorn66 is on a distinguished road
mysticunicorn66 mysticunicorn66 is offline
Member
mysticunicorn66's Avatar
Join Date: 2008
City: Allegany County
State: MD
Country: US
Interest: I am a family member of someone with ALS/MND.
Posts: 241
mysticunicorn66 is on a distinguished road
Default Re: My mother has ALS

Remember #1...you are a family and you all need to work together to take care of Mom. I can tell you from experience as I was pretty much sole caretaker for my sister initially, that it can be draining. Try to work together in taking care of Mom. ALS is a family disease. It affects the whole family.
mysticunicorn66 is offline  
Old 02-03-2014, 08:23 AM #8
KareninDixie's Avatar
KareninDixie KareninDixie is offline
New Member (Say Hi)
 
Join Date: 2014
City: Loganville
State: GA
Country: US
Interest: I am a family member of someone with ALS/MND.
Posts: 4
KareninDixie is on a distinguished road
KareninDixie KareninDixie is offline
New Member (Say Hi)
KareninDixie's Avatar
Join Date: 2014
City: Loganville
State: GA
Country: US
Interest: I am a family member of someone with ALS/MND.
Posts: 4
KareninDixie is on a distinguished road
Wink Re: My mother has ALS

Thank all of you! Mom came through the surgery with flying colors (not thrilled about having it, but that's another story). I did go to see a counselor and they have put me on an low dose anti-anxiety medication (to take when I feel a panic attack coming on), and an anti-depressant. I'm coping much better and have been over to see them several times in the last couple of weeks. My youngest sister is a teacher for children with profound disabilities, and knows the feeding routines, etc. so we're in good shape there. Mom has always been asymptomatic for pain, but she's starting to feel it now. She's made us all sign paperwork that she will not be put on a vent when that time comes. Dad is still not taking his meds, and I can't get him out of the house. I'm working on that. I do apologize for my panicky post and want to take the time to thank all of you. You are wise, kind and helpful. Mom is still mobile, although her legs are not working anymore. She's got a new chair that will keep her upright in the best position, so that she's comfortable and complete mobile. It's a one button control, which she can handle. Now, my middle sister has dropped out, so I have to concentrate on finding her. She is an alcoholic, and I think she's on a binge. Want to find her before the worst happens.

Again, many thanks for your great advice, and for reminding me that I am a grown woman. I can't control this disease, but I can control how I handle it.

Karen
KareninDixie is offline  
Old 02-03-2014, 08:38 AM #9
hjlindley's Avatar
hjlindley hjlindley is offline
Senior Member
 
Join Date: 2011
City: Richmond
State: VA
Country: US
Diagnosed: 10/2011
Interest: I have been diagnosed with ALS.
Posts: 760
hjlindley is on a distinguished road
hjlindley hjlindley is offline
Senior Member
hjlindley's Avatar
Join Date: 2011
City: Richmond
State: VA
Country: US
Diagnosed: 10/2011
Interest: I have been diagnosed with ALS.
Posts: 760
hjlindley is on a distinguished road
Default Re: My mother has ALS

you are amazing Karen. Your family is lucky to have such a bright intelligent woman on their team. You're absolutely right we cannot control this disease but only how we handle it. Good luck and we're all here for you. Hollister
hjlindley is offline  
Old 02-03-2014, 03:21 PM #10
Barbie's Avatar
Barbie Barbie is offline
Extremely Helpful Member
 
Join Date: 2007
City: orlando
State: FL
Country: US
Diagnosed: 01/2007
Interest: I lost a loved one to ALS/MND.
Posts: 2,659
Barbie is a jewel in the roughBarbie is a jewel in the roughBarbie is a jewel in the rough
Barbie Barbie is offline
Extremely Helpful Member
Barbie's Avatar
Join Date: 2007
City: orlando
State: FL
Country: US
Diagnosed: 01/2007
Interest: I lost a loved one to ALS/MND.
Posts: 2,659
Barbie is a jewel in the roughBarbie is a jewel in the roughBarbie is a jewel in the rough
Default Re: My mother has ALS

Good for you Karen! you sound like you have taken control of yourself and are dealing with everything in a logical and strong way!

your post was not panicky, but you were just feeling overwhelmed. that is what is so great about this forum, we care and are all going thru the same thing as you. I wish you all the best on this awful journey--please stay in touch with us.
Barbie is offline  
Old 02-03-2014, 03:39 PM #11
affected's Avatar
affected affected is offline
Extremely Helpful Member
 
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 11,461
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
affected affected is offline
Extremely Helpful Member
affected's Avatar
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 11,461
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
Default Re: My mother has ALS

that's great Karen, your attitude is wonderful
affected is offline  
Old 02-03-2014, 10:25 PM #12
Arobertson1 Arobertson1 is offline
New Member (Say Hi)
 
Join Date: 2014
City: Dallas
State: Texas
Country: US
Interest: I am a family member of someone with ALS/MND.
Posts: 5
Arobertson1 is on a distinguished road
Arobertson1 Arobertson1 is offline
New Member (Say Hi)
Join Date: 2014
City: Dallas
State: Texas
Country: US
Interest: I am a family member of someone with ALS/MND.
Posts: 5
Arobertson1 is on a distinguished road
Default Re: My mother has ALS

Good for you for taking care of yourself; you must do that or you can't help anyone! I know I've had to do the same when it comes to panic attacks. When you are with your family you can now fully be there and involved instead of feeling worried if a panic attack will start. If it happens you now have medicine to help and just knowing you have the right meds can be a comfort. God is good; He knows our every need
Arobertson1 is offline  
Closed Thread

Tags
advice, age, als, breakdown, breathing, breathing issues, dad, diabetes, diagnosed, diagnosis, family, father, feeding, feeding tube, foot, heart, life, medicine, pain, support, surgery, testing, tests, treatments, work


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
A mother with ALS. andreamarie General Discussion About ALS/MND 1 09-06-2013 11:23 PM
Your mother is always with you... Txgirl Other 4 08-28-2013 12:57 AM
Mother with ALS AngelaRenee General Discussion About ALS/MND 5 11-17-2012 10:17 PM
My mother has ALS Sheldon General Discussion About ALS/MND 6 03-15-2012 09:51 AM
Mother-in-law has ALS Shirleys Family Current Caregivers (CALS) 2 07-11-2011 06:06 PM
Mother's Day pepsiman Other 21 05-15-2010 08:14 PM
My Mother blzr503 General Discussion About ALS/MND 15 01-25-2010 12:30 PM
How do I tell my mother? SKhan General Discussion About ALS/MND 12 10-05-2008 09:50 PM
My Mother Has ALS and.... chrismaya General Discussion About ALS/MND 11 07-23-2008 09:46 PM
mother in law wants to die texgrl General Discussion About ALS/MND 46 03-18-2008 08:59 AM


All times are GMT -5. The time now is 02:51 AM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016