Status
Not open for further replies.

Laine Irene

New member
Joined
Mar 30, 2015
Messages
4
Reason
CALS
Country
US
State
California
City
Lakewood
This is my first post on this forum. My son, who is 35 years old was diagnosed with ALS
the end of January. It is so new and so overwhelming to all of us. I feel so helpless
sometimes and when I see him my heart breaks. He has slurred speech, lot of muscle
loss. He can walk some with a walker but very little. I am not working so I have been
taking him to doctor visits, etc. He lives in an apartment with his fiance' who works
during the day. My biggest concern is what happens when he can no longer stay by
himself during the day and can no longer walk and needs daily care. There doesn't seem
to be any apartments that have walk in showers or disability facilities. It is frustrating.To watch my child go through this has been so very difficult. I pray a lot to help me to be
strong for him. Anxious to hear from other moms going through this.
 
So sorry to welcome you here.

It wasn't my son but my young 55 year old husband that had bulbar onset.

There is a file at the top of the section for General discussion for anticipatory planning that may help you.

https://www.alsforums.com/forum/gen...cipatory-planning-trying-stay-step-ahead.html

He is going to need someone with him all the time at some point, and if he is already using a walker that time may not be too far away. How does his fiance feel about the prospect of becoming his primary carer?

Do you live far away from him? Can he come to live with you as his needs increase?

It's hard sometimes to just breathe and be calm as you are still adjusting to the shock of the diagnosis.

I would suggest contacting the local ALSA chapter for some advice too.
 
Is he a veteran? This makes a big difference.
 
Hi Laine,
I'm so sorry to hear the news.
I am a caregiver for my step mother and we live in South OC.
I recently connected with the OC ALS chapter and they were very helpful.
I learned that there are adaptations available for almost every obstacle, and the chapter may have
equipment available for you to borrow at no cost.

My Stepmom, Kathy, is also a patient at the ALS clinic at Cedars-Sinai. If you are not in contact with them, you should be.

If he doesn't have long term care benefits, and at his age, he probably doesn't, he may qualify for assistance under medical AND in California, he may also qualify for In Home Supportive Services, IHSS, which provides cash payments for in home assistance, which can include paying a family member. Furthermore, I recently learned that hospice can also assist.

Start by calling your local chapter. I was lost until I met with the social worker there.

start here to find the chapter nearest you.
In Your Community - The ALS Association
 
We are looking at getting a "shower Bay" sent over from the USA as an alternative to building a special bathroom.
Have a look at them on the net.
Love Gem
 
>Is he a veteran? This makes a big difference.

Ditto that!
 
Gem that shower bay looks brilliant, I kept seeing something just like that in my head when we went through the saga of how to do showers without a bathroom remodel! Someone stole it out of my head! :shock:

We used a portable shower base that was loaned to us for as long as needed by Home Modifications service for $50. You just need a floor drainage hole.
 
Don't let your son fall if he isn't walking good with a walker. Be safe and only let him take steps with someone directly behind him holding on to a gait belt. Don't ever let him do stairs by himself. Ever! You can't risk a serious fall. Get safetly rails installed in showers and bathroom. Make sure rugs and things are secure so he can't trip over them.
 
I'm sorry to hear about your son. I am taking care of my daughter who is diagnosed with als and Ms. It has been 4 year and watched her go from working/walking to unable to walk use arms talk.plainly. she has peg tube and only eats about a cup of food by mouth daily. She had to move in with us along with our two grandchildren. Shes divorced. She is 37. I am sorry you have to endure this as a mother I feel this same pain and it will test all your strength. You will get really tired and frustrated at times and really sad others. Reading here has helped me to learn helpful ways to handle issues that come up and prepare for future issues. God bless...
 
i too am sorry to hear about your son. my 42-yr-old son was diagnosed in february this year. he is in new york and i am in california. i will see him in about 3 weeks. what i want help with, and don't know where to find it, is how to keep strong for him, strong for my husband, honor my grief, and keep from just weeping all day. how do you do it?
 
i too am sorry to hear about your son. my 42-yr-old son was diagnosed in february this year. he is in new york and i am in california. i will see him in about 3 weeks. what i want help with, and don't know where to find it, is how to keep strong for him, strong for my husband, honor my grief, and keep from just weeping all day. how do you do it?

Antidepressants help.
 
thank you for getting back to me. i don't want to try the anti-depressants just yet. i realized the other day that i could just not THINK about it. i can do research from here, but there's really nothing else i can do at this point. if i think about him and get sad and weepy, it does not help him...and would make him very unhappy if he knew. i'm glad i found this forum.
 
Hello, all you lovely parents of MND sufferers. I have a rare form of PLS so in no way do I know what your children are going through. I am 42 and have two children aged 13 and 11.
My parents are just amazing. My husband Wayne does shift work, so my dad does school runs, taekwondo runs, whatever lifts the kids need. My mum does many of my doctors appointments stuff like that. They don't make appointments for themselves at school pick/up or drop off times 'just in case'. I only have to ask ANYTHING and the answer is yes. Wayne's sister has a cafe, and we pay her to make meals for us. No mean feat, my son Connor has so many allergies and I tend to eat stuff that doesn't need cutting up, that became too hard. She makes things exactly how we want them. (And delivers!).
These family members are marvels, particularly my parents. I am extremely fortunate they are in the same town as me. When they were over East visiting my eldest brother for 3 months, with a 2-3hr time difference, I have no idea how many times I rang them at some un-Godly hour, crying into the phone. They would just listen...mainly to tears...but they were there.
Don't get me wrong, it's obviously time that your beloved children need more that reassurance over the phone, but, never underestimate the power of hearing soothing words from 'mum' day and especially night.
God bless you all as you continue this journey with your children and us.
Janelle x
 
I am so sorry to hear about your son. The ALS foundation of Orange County is a good source of help. I too cried everyday for the first week
and couldn't eat or sleep. I got some sleeping pills from my doctor to help. I also started meditation everyday. Just a few minutes each
morning but it helps. I haven't started going to caregiver support group yet but am planning on doing that in the future. It must be very
difficult being so far away from your son. I try to just do it one day at a time and not to think about what the future holds. My heart goes
out to you. It is such a difficult journey.
 
>i don't want to try the anti-depressants just yet

no shame in this!
 
Status
Not open for further replies.
Back
Top