newish and Need support

[Brenna86]

Hi all! Ok so I joined back in December because my mom was going through some testing and ALS had come up. Since then it’s been utter chaos.

She ended up being diagnosed with ALS. She has a slower version of it, but it’s still fast to me. Her and my stepdad are currently living with my grandparents (her parents) and my grandmother is her main caregiver. (She has fibromyalgia and my grandfather is starting dialysis soon) My stepdad works most of the time. I live with my dad an hour away and am trying to finish college. I’m 2 classes away but am currently having issues due to needing upper level classes and the campus I’m trying to work with keeps putting me at the end of the list to pick classes.

Anyways so my mom has lost the ability to walk, move her arms, and use her hands, her legs and feet. She can move her legs and feet a bit and tries to, as well as her hands. She does have a physical and occupational therapist coming in during the week. She’s also very quickly loosing her ability to talk. She can barely speak now and its small words and she’s becoming difficult to understand. She was also just in the hospital and we found out the muscles in her throat to push down food is weak. She had to get a tube in her stomach to help keep her hydrated and her vitamin levels up. But she can still eat soft foods like jello and yogurt.

It’s just so hard right now. Her shoulders and arms hurt alot. She needs the massaged and pulled out of clutched positions, which I help do and it’s fine. But I hate seeing her in so much pain. She also has to be helped to a portable toilet but there’s two people in the house that can pick her up (I can’t anymore and my stepdad has gotten tendonitis and arthritis in his elbows up from lifting her.) And one of those people isn’t home much and the other is about to start dialysis. So we did have someone come to evaluate her while she was at the hospital so I think they’re FINALLY sending help.

It’s just hard and scary. I’m 24; I’m trying to finish college, because she also wants to live to see it. I have a boyfriend and I think the stress of this and other things going on are making me not have much emotionally to give. He’s wonderful about it, but ive just felt nothing for a few months now, and I don’t know if its stress, or other reasons. I feel horrible and torn. My mom understands currently im only able to see her about once a week due to school and work, and emotionally it’s all I can handle. I hate saying it and I feel so bad. But it’s very emotionally exhausting. My stepmom also has MS and is dealing with flair ups.

They’re getting a hydraulic lift thankfully because her legs get so stiff she slides when we try to lift her up, and she’s ended up on the floor a few times. And she gets upset very easily and in pain. I don’t know how to comfort her, she’s upset alot.

I don’t know what im looking for. Im sorry if I sound selfish in trying to deal with my own life as well. I just feel like im falling apart, I am in therapy which is helping and on anti-depressants. I just would like to know if others go through this and how they deal with it. I know at some point im going to loose her, I don’t want to. But I don’t want to see her in pain and upset and unable to live like she wants to.

ty for any advice

 

[tdamess]

it is very hard to go thur , and my son is not as far along as your mom i dont want to see this come myself but i do know we will find the strenght somehow , maybe we will break when it is over or this process will keep us going as they would want us to but i am wishing you the best

 

[missmineau]

Three little letters that change lives forever. My mom was diagnosed in October of 2010 and it has turned our worlds upside down. It has been very hard to watch my mom. a strong independent woman, not even be able to wipe away her own tears. I have found lots of comfort in this forum and I hope you do too. Its a horrible and cruel disease. This forum is a great place to come to know you are not alone. I find somedays I am accepting of it all and other days I am still very angry and upset. I have been told its almost like grieving and that a person will bounce back and forth between the stages. Enjoy your time with your mom, enjoy the simple things. You are in my thoughts and prayers.

 

[Gma'sMeMe]

My Mom too is suffering from ALS. This site has been a comfort for me and I feel like I have made some new friends, some with ALS (who's strength will inspire you!) and others who have a relative with ALS. My mom was diagnosed in Dec 2010 and seems to be progressing just like yours. She has lost her leg and arm strength/mobility and it is so frustrating for her as she is 100% "with it" at 85 years young. She says to me whenever I visit "why me, why me?" to which I just always tell her....."we just dont know and we wont until we are in heaven...until then just know how much I/we all love you and we are going to do everything we can to make your life as good as we possibly can" and I think she likes to hear that. She just wants us to not forget her/not be there for her. She says "I hate that you and your kids have to see me like this" and I say "its ok Gma, we remember so many wonderful times with you/all the time you spent with the grandkids playing on the floor, etc. and THAT is what we
focus on..."
Just know you're not alone.

 

[notme]

Hi

First, I'm sorry for your family struggles. Sounds like you are all dealing with quite a bit.

There are a few suggestions I'd make.

Transferring to bedside commode or wheelchair: Get a transfer board. You can find them online and have the OT people help you learn to use it. It makes moving people a lot easier. If she can bear weight on her legs with support--there is what we call a pivot transfer that takes about 30 seconds to do--and doesn't hurt the back if done properly--again, have someone show you how do do it.

Your post was a little conflicted--she can't use any limbs--then next sentence says she can a little, so I'm a bit confused.

Does she have a wheelchair yet? I'm assuming so--if not--contact the ALSA in your area about a loaner closet.

If she's lot use of her limbs and the majority of her speech in 6 months--that's not slow progression--it's fast. How's her breathing? Any issues there? A bi-pap may be needed pretty soon to help her with breathing--if she's getting headaches, it's a sign that there may be some issues with breathing even if she isn't noticing them. FCV numbers will tell in that area.

Sounds like there is some spascity--the pain in her arms and shoulders you describe. Are they treating her pain at all? There are meds that help with spasms and pain meds can be prescribed.

Spend as much time with her as you can--because it seems from your post that if nothing else, you're going to feel guilty if you haven't. It's hard, but those moments in time will be cherished by you al.

There are also aids out there that can help her communicate-- speech therapy can assist with them.

Good luck and welcome to the forum.

 

[notme]

off to moderation--not sure why. Hope you find some help through the ALSA

 

[Miss]

If your mother was just diagnosed in December and has already progressed that far, no wonder you are upset. This is a monsterous disease. It is very painful to watch someone you love suffer the consequences of the disease. There are so many people on this forum that can listen to you and offer advice. Best of luck to you and your mother.

 

[brooksea]

I posted to this thread today. It's not here. What?

I'm sure your mother would want you to graduate from college and would want to see you do it! Hang in there and know you are doing your mom proud!

Do not try to put all the weight of the world on your shoulders. Your mom doesn't expect that out of you, I'm sure.

 

[Gentleman Jim]

Brenna86,

Sickness gets our attention. So, begin to learn that, what we submit to gets stonger, what we
resist becomes weaker. Submit to learning how to depend upon others. What if it were you?

If you are wondering what I am really saying, here is the long and the short. Change your
way of thinking about it. Look for the benefit, your relationship will become stronger or
grow more distant. Those kinda things will be more apparent in your life.
Other than that, you will become more educated medically. Anyway, we are here
for you and others like you. Thanks for sharing your burden.

God Bless,

Jim

 

[Pandora]

Brenna86,

This is the right place for you. Sorry we all met you this way. But as for advice, a ear to listen, and a place to vent and cry, you found it. DO what you can to take care of yourslef. Spend teh time you guys have left in the best way possiable. This go from bad to worse and back again with this hateful ALS. You are going to have range of emotions, and you do get them all. Just know that we are here and we understand, Good days, bad days.. and all inbetween. It's a hard road to go down and none of us chose it, but here we are. Just love her and when its gets hard, love her more. As for your boyfriend, make him a part of it. Its now a part of you, he can share in the joy and hurt with you. Don't shut him out, you will need him now, more then ever. Good luck, and dorp me a line, ill listen.

 

[alightsey]

Completely understand the feelings your going through. I am and have a husband and 2 children. They told us that they thought dad had the slow progressing type too but I don't think that is true. Were ahead of you on all the symtoms. I moved my parents in with me earlier this year so that I could better help mom. I haven't worked since November so that I can be here full time, bc mom has to work some part time so she can keep her retirement and everything with her job. I took family medical leave from my work, and I also hold insurance for my family. Getting burnt out is easy to do. We also have my grandmother my moms mom living with us after she had a stroke, so we have brought in help to help me during the day. Wish I could tell you that this is going to get easier, but the therapy does help it good to vent.

 

[Brenna86]

Thank you everyone whos responded! I really appreciate all of the support/advice. I wrote than when I was really upset so sorry But again thank you!

Just celebrated my moms 49th birthday yesterday, it was good, we had two close friends and just family. My mom did get upset at one point as she was embarrased but we all told her she diddnt need to feel that way. But we had a good time, she was able to eat a tiny bit of spagetti and cake. Her mouth and throat muscles are getting worse i can tell, shes having more trouble eating and even drinking, also its very difficult to understand her. She was trying to tell me our cat was outside and i couldnt understand until we got the word outside then she said meow. So I could tell it was frusturating and just had her take her time. but we got to talk a bit, I updated her on things and we got to watch the season premiere of true blood together. So I think all in all it was good. She was mentioning wanting to get one of those boards that talks for you so I may have to do some research into how they work for her. Also she mentioned something about a new trial drug that helps reverse symptoms by up to 50%, has anyone heard of this? I dont know what shes talking about.

 

[Miss]

I haven't heard of any trials that reverse the destruction of ALS. Getting a device that would help her communicate is definitely a step in the right direction.

Also, no one is trying to get in your business by knowing what city you live in. Often, people on the forum can recommend services that are available to you when they know where you live. I promise you will not be stalked!

 

[Brenna86]

ok, thank you. sorry about the stalking insecurity