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aimee139

New member
Joined
May 11, 2010
Messages
3
Reason
Loved one DX
Country
US
State
NV
City
Henderson
Hi Everyone,
This is my first time visiting this site. I was looking for a place where people with ALS or people who have a loved one with ALS could offer advice/support. My mother-in-law was diagnosed with ALS in January 2008. She has never accepted the diagnosis and has been convinced God will heal her. This has been so hard on my husband and his family. Her 80 year old mother is her primary caregiver. She refused to let anyone else help. My husband and I watch as her poor mother gets more and more frustrated and exhausted everyday. We have no idea how long she may have. She can't move or speak. She communicates by blinking for yes and gets so upset when her needs aren't understood. She eats about 1 cup of pudding a day. She doesn't see a doctor. She has no feeding tube-she refused to ever have one when she was still able to speak. About a year ago before she was bedbound my husband would have to go over to her house every day after work to get her off the couch and into a wheelchair so her mother could take her to the restroom. I got very upset because I had just had a baby and needed my husband at home. I feel so guilty for getting upset. I know part of it was hormones from just giving birth but I still have a lot of guilt i'm carrying. I had never even heard of this disease until my mother-in-law was diagnosed. I can't believe how quickly she deteriorated. It's heartbreaking. We never thought she would have survived this long. We keep thinking she can't possibly have much time left but we just don't know. This is just so hard and I wish I could do more to help my husband through this but being a mom of two babies makes it difficult. ALS is a horrible disease..
 
Hi, welcome to the forum, Aimee.

I feel so badly for you. You have nothing to feel guilty about. Sick or not your mother in law is being selfish and unreasonable. Try to get some counselling to help you and your husband. Your kids come first. Don't let them suffer because of this sad situation.

Northern Dancer
 
Hi and Welcome. This is a wonderful site with people who understand the problems associated with ALS. I agree with Northern Dancer - you should work NOT to feel guilty. You might consider calling the ALS organization in your city / state. The local ALS group here seems really helpful and have some various support functions, and the one in Boulder helped my daughter deal with the diagnosis of my husband, her beloved step dad, since she lives there and we live here. ALS is a horrible thing that can take over the entire family - so I encourage you to take advantage of those things that are out there and try to let go of guilt. It will only wear you down. Mary

__________________
Marty's wife - Marty diagnosed ALS 4/27/10
 
Have you contacted ALS of Nevada? They are great. I know here in Reno they have support group meetings once a month, and I am sure they do in Vegas too. HUGS Lori
 
Thanks for all the kind words. I know my mother-in-law has been very selfish throughout this whole ordeal but when I get angry at her I try to imagine how I would feel in her situation. I don't think that's an excuse but I put alot of the blame on her husband and mother for allowing her to have that much control. I feel guilty because I got very upset with my husband for not putting his foot down with her and explaining to her that not only does he work 60+ hours a week but also has a family and can not possibly be her caregiver as well. Unfortunately for her that all came to an end when she was no longer able to move to a wheelchair. I just wish I hadn't gotten so angry with him-I know he was only trying to be a good son. As far as ALS of Nevada we are in contact with them, my mother in law has refused a lot of the help they offer. Unfortunately it's not really possible for us to go to the support groups as I have no one who could watch my children. My mother in law was my babysitter before she got ill. I just don't know anyone and really couldn't afford to pay anyone. It's hard also because she doesn't see a doctor so we have no idea if she is close to passing. Looking at her it's obvious she's doing terrible and doesn't look like she could she have much more time but then again we all have thought that for over a year now.
 
I don't know if you have access to it, but another suggestion is that many companies that offer insurance to their employees also offer an EAP (Employee Assistance Program). They have people you can usually talk to on the phone (no child care need) and sometimes it helps just to have an unbiased listener. EAP is not just for the actual insured - it is typically available to the entire family. I hope you find a solution - either through your church, synagogue, or an EAP contact or the local ALS group. Peace be with you - Mary
 
Hi Aimee,

Welcome to the forum family - Sorry it has to be under the circumstances but can assure you that this group of folks is here for you/with you. It sounds like you have been a great DIL and your husband a loving son. You have nothing to be guilty about. Believe me, I know that is easier said than for you to ignore. Be kind to yourself and let go of the guilt.

Hugs,

Diane
 
I was going to suggest hospice, but if she refuses to see a doctor, I wouldn't know how you'd get hospice. If you could get hospice, they would provide counseling for those involved (from my understanding).

Try not to feel guilty! To refuse help that can be provided is being selfish! My only concern for you right now is to make sure you and your husband are OK! Please do not ALLOW ALS to come between you, your husband and your children! I hope y'all work that out right away.

If your husband and in-laws won't put their collective feet down about needed help, then there isn't a thing you can do about it. So raise your babies as best you can without guilt that you could have tried harder.

It just seems really, really selfish that your MIL has her 80 year old mother doing caregiving! I'm sorry! What is she thinking? She was actually helping her toilet? What if the mother fell and broke her hip? What then?

Sounds like your FIL and husband really need to just take over and bring in help. Sometimes that is the only way.
 
My husband and I are ok. I've apologized to him several times for getting angry. He doesn't seem to be upset with me. There is a hospice nurse that comes in but she doesn't do any care other than helping order meds. ALS of Nevada does have a nurse that comes in but my MIL refuses to allow her to do anything. To my understanding when the nurse is there she just sits there and allows her mother to nap. If my MIL needs changed or anything the nurse has to wake up her mother. Yep her 80 year old mother does it all, changes her, feeds her-everything. We were all upset when she was taking her to the toilet but she never put her foot down either. My husband and his sister have talked to my FIL several times about getting more help but he says he can't afford it plus she will refuse any help from anyone else. The whole situation is ridiculous. Did I mention her mother doesn't even live in Nevada? She lives in Illinois but has been here over a year now caring for her daughter. I know it's something any mother would probably do for their child but I can't imagine allowing my mother to do that. We all feel horrible about feeling this way-but we just wish she would pass soon so that she is not in any more pain and this will all just end. I can't imagine her surviving much longer-she is literally skin and bones and really doesn't eat. I don't see how she could possibly go on much longer. I just pray this doesn't kill her mother.
 
Amiee, just was wondering how you are doing today and how that today will be smooth for all of you. hugs, Kay Marie
 
Aimee~ you are not alone, I am the wife of a man whose mother has ALS (whew...thats a mouthful) It is also hard on the spouses...I completly understand...
In friendship
Jeannie
 
Hi Aimee,
My FIL has ALS and it is very hard on my husband also.My prayers are with you and all of your family.
 
sometimes you have to put your foot down and just take control -point out she is not fair to her mom and when help comes mom is going to go out for a while and will not be there and the aid will take care of her she will adjust after a few times and no one wants anyone to change them but 1 or 2 people and really not even that i know i wouldnt .... but , you have to do what has to be done .... best of luck
 
hi aimie there was of great suggestions from caring peole on this forum the als foundation would be a good start and like someone said hospice .mo need for you to feel guilty you have been doing your part .take care of you the chilren and husband and get some support from organizations out there for situations like yours god bless
 
Hi there..ALS affects the entire family, kids and adults, and it takes a TEAM of people to cope with it. Despite what your mother in law wants, you and your husband need to recruit your team members!..is your mother in law on Medicare? Medicaid? she should be seen by a doctor who could get her started with a nursing visit at home to assess her needs.....my mom has ALS, she's on Medicare (not Medicaid) and gets 10 hours a week of home health care aides...the service runs out after 7 weeks or so but her regular primary physician re-orders ....there are "levels" of care/services......also, if she's eligible for hospice, her doctor can guide the family through that process too....again, it's a level of service........at least that's how it's going for my mom in NJ........and here's the thing -- you cannot let her be stubborn and refuse help that she is eligible for!.....it's not fair to the family! My mom was a bit like that too, and always go into a depression when there's a change in the routine....i think that it makes the disease more real to them, to have "outside" help coming in, consults with doctors, etc...and any time an adaptation has to be made because of the disease, it's like a loss...........tell your Husband and your mother-in-law's mom to start calling docs to see who might be able to help. My mom has a doc who makes house visits now that she is housebound. Call the nearest ALS clinic for guidance too. Also, are there neighbors willing to help? Someone in my mom's condo community organized a meal plan, where each neighbor brings a cooked dinner over 1 night a week. Even if your mother in law doesn't eat much, the rest of the family needs to. Perhaps someone can get that going. Or ask someone to do the food shopping one day a week or run an errand. Good luck and don't feel guilty.
 
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