My Son Tim

[Celia]

Please help me, I'm new at this. My son is 49 had sx. 8/2015 DX. 5/2016. Appears to be declining rather fast. Started with his left leg, than left hand, now right leg & right hand. Unable to SHAVE, DRESS, WALK, uses electric tooth brush. Hands unable to grasp cup. Has scooter, wheelchair , lift chairs, getting lift for porch. Ordered power w/c. Difficulty holding utensil to eat. No trouble swallowing yet. TODAY HIS VOICE IS CHANGING. I feel like I can't breathe.
Tim is married & has 3 children 17- 19 & 21.

 

[scaredwifetx]

Celia, Sorry that you have to be here and its due to your son. Its a big shock. It sounds like you have a good grip on the equipment.

I often feel like I can't breathe and that I am screaming inside. Just know that you can safely come here to vent, ask questions and or just read. Sometimes all I can do is check in but whenever I have needed to vent or need advice...this forum is my stop.

We can't take away the pain but we can help you deal. I hope that you can or have counseling for the children, wife and yourself. It is very hard when its your child.

My thoughts and prayers are with you.

 

[Atsugi]

Celia, a few more details will give us a better look at his situation:
1. How is his wife involved with him and the kids?
2. Who is his primary caregiver at home, all day and night?
3. When the time comes that he cannot go to the toilet himself, is there someone who can transfer him, keep him steady, wipe him clean, etc?

Utensils are available online. They have big fat handles at an angle.
Has anyone thought about a feeding tube?

Paperwork: Advance Directives, Power of Attorney, etc?
The estate: Power of Attorney? Are all the assets, bills, loan accounts easily found and understood?

At this point, begin treating the symptoms as they occur.
You, mom: Don't forget about you. You can only care for him if you take care of yourself, first. Perhaps your family physician could help with your anxiety and grief. It is so much better for the Person with ALS if the Caregiver can get a half-step ahead of the disease, and that means getting help for your own self.

We're here for you.

 

[soonerwife]

Celia, so sorry to hear about your son's dx. I can not imagine how horrible that is. You have found the right place for support. We are here for you to ask questions, vent or whatever you need.

 

[lgelb]

Welcome, Celia. So sorry about Tim. Please encourage him or his wife to join us if they are so inclined.

As far as a feeding tube, if he has no trouble swallowing as yet, sounds like he has enough on his plate for now. Does he use the ALS clinic at UC, UIC or Northwestern?

Best,
Laurie

 

[Statius@]

So sorry to hear about your son--it must be devastating. As others have said, this forum can be a great help and source of information and support.

Ed