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Sep 17, 2005
Hi, I've been having trouble with my dad, who is the other caregiver to my mom, who has ALS. Now, he does take her to her doctors appt. and makes all the necessary phone call, but that's about it. He leaves the rest of it to me when he can. I don't know how many things I've had to cancel because we couldn't get anyone to stay with her. I don't mind, I love her, but some help would be nice! I thinks he thinks we sit around and drink coffee all day! I am up and down constantly, getting her what she needs, getting her dressed, taking her to the bathroom, etc. He's a hard man to talk to because he keeps his feelings all bottled up, and I've always been a little intimidated by him. I feel better today because I got to go work out, and that always helps. But I'm home now, so back to work. Please don't get me wrong, I love and adore my mother, I would just like so more help. Maybe I just needed to vent.
Thanks for listening

A Daughters Love

Active member
Oct 8, 2005
Hi Jennifer,
I can't begin to understand how hard it is for you, not only dealing with your mothers ALS, but dealing with your dad as well. I guess I don't really have anything to say that would help ( I wish I did ) but, stay strong. It's what gets us through!


Nov 4, 2005
Hi Jennifer. Sorry to hear you are having problems. Have you contacted your local ALS Society. They sometimes have volunteers that will come and sit with your mom while you get out for a rest. We have home care nurses here that will come into the home to help as well. I'm not sure if your state has that but it doesn't hurt to call the local Muscular Dystrophy Association. They sometimes offer help to ALS patients.
Hope this helps. Al.


Distinguished member
Nov 4, 2003
Hi Jennifer:
I'm not sure what's available in Georgia but here in the Great White Frozen North there is Community Care, Attendant Care and Respite Care available in the community to help with patients who are incapacitated. They provide part time assistance to primary caregivers. Here they can be easily tapped through the family doctor. Perhaps there is something available in your community similar to this. At least it might be worth checking out.

Good Luck



New member
Jul 15, 2005
That's not good, I understand your anger. You need to voice this to your mom's ALS doctor so he can open your dad's eye's. Or your mom should say something to him. You cannot take on everything yourself. You may be handling things now but eventually you will need more help.

It's all in the way you ask..put the feel'ers out. "hey dad what are we gonna do when mom gets worse?", "at some point we'll need help, I can barely handle things now!"

The question must be asked even if a fight might break out. At least you'll know where he stands.

Nobody asks for the responsibility it just has to be done. It takes it's toll on everyone. Keep in mind there are somethings guys are uncomfortable doing. Don't envy his positions either. Be creative in thinking of ways of making an uncomfortable situation more tolerable. You'll get a better response offering solutions than just dumping a problem.

Now, I don't know the situation. Who brings home the bacon, if kids are around, if mom and dad are close etc.....Reality sucks but the question has to be asked by someone.

Hope this helps.

Mary Helen Barr

Active member
Mar 6, 2006
I just came across your entry today, 3/25/06. I understand what you are going through, because that sounds like me! My father is the one with ALS, and he thinks my mother (77) and I (and I live in my own house with my husband and 2 kids, and have 2 jobs) can handle it. I have just about had it! It is heartbreaking what this disease does, and I wish he didn't have it. However, it's not fair to call me all the time to help him go to the bathroom, get washed up, etc. I'm almost never home! Believe me, my parents have enough money to have home help. He says they can't afford it. We have a few very nice friends who come in voluntarily to help with some things, but I think it's unfair to rely on people that way. At least offer to pay them! I don't see how someone so intelligent can be so clueless.

It's been several months since you posted your entry. How are things going now?

Mary Helen
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