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emma1230

Member
Joined
Aug 27, 2008
Messages
13
Reason
Loved one DX
Diagnosis
11/2007
Country
US
State
wa
City
everett
hello! I am emily, and my mom has ALS. She had symptoms for the last 2 years, but was diagnosed in nov of last year. In the last few months she has really gotten worse.
My husband and I, and our two girls are moving in with my mom as soon as we get all of it ready for us to move into her house. I am so overwhelmed and don't know how and if I can do this forever. Everyday is so hard.. She cries non stop for hours. I try so hard to stay strong.. but I feel like she thinks it's my fault she is sick.
She is getting so angry and kind of mean.. I don't know what to do.. We aren't even living with her yet, and she's a nightmare.. She's just now starting to not be able to walk so she uses a walker.. and only I can understand what she says..
I have a 4 month old and a 2 and a half year old.. I just pray that I get through this.. does anyone else know how to deal with the crying? well all of it?
I feel like this is a dream and I am going to wake up.. it's all so hard!
sorry to complain.. i just don't know what to do..
thanks emily
 
Hello Emily. I am so sorry for what is happening to all of you. This disease really takes it's toll!

You landed in a good spot on the internet, though. Lots of kind and compassionate folks around here- and many have been right where you are. I am glad you decided to join us! Cindy
 
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Everyday is so hard.. She cries non stop for hours. I try so hard to stay strong.. but I feel like she thinks it's my fault she is sick.
She is getting so angry and kind of mean.. I don't know what to do.. We aren't even living with her yet, and she's a nightmare.. She's just now starting to not be able to walk so she uses a walker.. and only I can understand what she says..

Emily, my heart just goes out to you, for what you are going through. You are an angel to take care of her as you are doing.

Besides your mom's natural emotional reaction to her disease ... anger and grief ... there are emotional components to ALS, too. Inappropriate emotional outbursts, etc. Hopefully, your mom's neurologist will prescribe something that will help her get control. Will you be going with her to her appointments? Whoever goes with her, make sure the neuro knows that she is depressed and needs help.

There are also devices that will help your mom communicate. Get in touch with ALS Assoc., and you will find wonderful people who will help you with very practical suggestions and loan equipment.

Bless you,
BethU
 
ohhhh.......I have read this post many times and had to take some real time to post,
I know how you feel, I went through alot of anger and resentment from Freddie in the beginning. I can tell you that I know that GOD will give you the strength to get through this. I wanted to just die, because I felt my life also was over, I have grandchildren and rarely get to see them, My children already had issues with Freddie before he got sick. He was black and a rock and roller guy....Sooo that is a whole other story.....I myself when having to change Freddie at 3:00 am, when I am already sooo tired,imagine how he feels having had the "accident" happen. He could not help it. I think to myself how I would feel being him and already feeling so bad that this had even happened. It is hard because eventually they lose it all. So sometimes us as caregivers we have to stand back and put ourselves in their shoes...One time I had an itch and wanted to see how long I could go with out scratching it....It drove me NUTS, so then I asked Freddie how that felt and he said "Well I guess you just forget about it, because their is nothing you can do about it" and just laughed. I think he thought that was so trivial to him now at the stage in the game.....I thought how can he laugh? Sometimes I just break down and cry and lay next to him and he just tells me it is ok.... WOW, how can he be so consoling to me when he has the ALS? This is a long journey and you will have lots of questions and these folks here are so helpful and caring...LOTS of love here.....and believe it or not, there is not so much gloom either you will find there is lots of loving folks here........Mt.Pockets, Grampal, Irma,Lori ,Jimmercat. and Cindy.They will make you laugh and not take everything to heart.Quadbliss and Joel C they are my helping hands as Freddie is trached as well as them....So hang in there and hang out here!
Hugs to you,
netty:-D:-D
 
emily,

sorry about your Mom.

she may have dementia, which sometimes effects pALS, or as Beth mentioned, Emotional Lability. The inappropriate crying is a sign of EM. The anger, I don't know. There are medications to help with this, such as Lexapro and Elavil.

Please keep us informed. Get the help you need from the Social Worker at the ALS Clinic and the ALS Assoc.

Gotta go and get son to bed now. Will watch for your posts.
 
Emily,

I went through all of that with my Dad. It seems like ages ago now and there were times I wasn't sure how I would get through it but I did. For the speech issue we got him a computer and after destroying it twice, he finally figured out email and internet. He cried a lot but he laughed a lot too. It was like he wasn't sure what to do if he wasn't laughing or crying and in between those he was usually pretty cranky. The meanness did decrease as he adjusted to being taken care of. I think that was what made him angry, his increasing helplessness and need to be helped with basic things. ALS takes everything away and that has to be the most frustrating thing in the world. You know how frustration works, we take it out on those that we love most and that we know will forgive us.

It is hard to balance raising children with caring for someone who has ALS. Get help from every avenue you can, you will NOT regret it. It will feel strange at first but you'll need it so you have time for yourself and for the rest of your family. One of things that seemed to help my father was to treat the anxiety. There are tons of things that can be given but he responded best to valium and now takes it twice a day. I don't know if your mother would be open to medication that would help her spirits or not but it is worth suggesting. The best advice that I can give you is to take one day at a time... the role you have and are going to have in the future are not easy ones and I've found when I start to think about the past OR the future too much, I get overwhelmed by it.

As for the anger issues.... I learned not to take it personally, although it was hard, and if he was really out of control I would tell him that he was being mean and that I was going to go in the other room until he adjusted his attitude. Sometimes that was what he needed to hear to get it under control. ALS doesn't take away thoughts and feelings but sometimes it causes a person to act irrational. The thing I found myself doing was treating my Dad like a kid sometimes, because he acted like one, and if I reminded myself that this is my DAD it helped me to treat him normally. Part of treating him normally was calling him on it when he was being awful... instead of feeling sad for him and letting him treat me like garbage. You'll learn the best approach after you see what your mom responds to. Hang in there!

Sandy
 
thank you for all of your responses.. yesterday was a pretty good day! i asked her to please be nice, and she said she would be. she's on anti depressants.. so maybe we need to change it. We don't go to the neurologist very often.. We have found that she stresses us out more than anything. They just are not very helpful. All she has ever done is scared my mom to death telling her basically she was going to die, she just doesn't know how long she has, writes a prescription, and that is it.. it's too draining.. the dr does nothing for her.
we go to a natural path, and it's pretty amazing the things they do. They seem to think my mom will be around for a while, I don't know if they are very hopeful or what.. but i think it is good for my mom.. they have her on lithium to stop the progression.. They also think that she as lyme disease as well.. so she's on rocephin.
How long do people have als? I know everyone is so different.. I just want to know what to prepare myself for. My moms insurance runs out in nov.. so I have to find her some kind of insurance.. There is just SO Much for me to do.. it's nuts! she was on cobra through work, but cobra runs out after 18 months..
I need to find some support groups. I guess there is one around here now.. i live in wa. sorry my thoughts are jumping around. there is just so much to say and ask!
again, thank you for all your help.. it's nice to know that I am not alone..
 
Emma-

You're a gift to uproot your life to take care of your mom. My mom passed away in June, and I had moved in with her two years earlier. It was never easy, but I don't regret having done it for a moment. If anything, I wish I would have been more vocal about how much I loved her. (We Scandinavian Minnesotans aren't very good at that!)

As far as her insurance goes, if she's unable to work, the best thing to do is to apply for SSDI. She'll be put on medicare and you won't have to worry about carrying expensive COBRA for her. Of course, it takes a while for things to get rolling, but my mom and I couldn't have survived without the medicare coverage for hospice, etc. Of course, if she's still working, that isn't much of an option.

I wish you the best with your move. And don't hesitate to seek help (here or elsewhere!).

Kaija
 
Hi emma, I know what you are going through. I live with my mom and it used to be ok, she was always a bit impatient and had her ups and downs like everyone else, I have to admit she never got really depressed, but she does have times were she can break down, as we all can. The anger was a problem and the meaness, it got so bad my sister couldnt take my nephew to see her, he's only 7 and thought his gran hated him, and even my partner gives out to me sometimes saying he cant stand the way she treats me. Ive stopped letting her away with it, sometimes it is cruel to be kind. So, I told her about my nephew and how he felt she always shouts at him, and how all of us feel like that, when we are all just here to help, I said it was easy for us to cope but not for the grandkids, I told her that everyone wants to spend good fun time with her. She has changed a bit, and for the better. When I became her full time carer I told her, no more cinderella, from now on I will do the things she used to do but cant anymore and will help out as much as I can and bring her out shopping etc, but I will not be treated like a slave. She took this on board too and things are much better.
I dont believe it affects the mind that much, they do know what they are doing, at one stage she was saying, well i looked after them for years its payback now!

I know its terrible but sometimes its nearly easier to treat her like one of the kids, we go somewhere nice when shes being good and so on. She can still make me feel guilty when i want to go somewhere alone so be careful of that when you move in! Good luck with everything but remember she's still your mom and you can still talk to her in the same way you always could. Take care.
 
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