Amyotrophic Lateral Sclerosis

[buf68]

This is my first post here on the coping boards, but i've been around awhile in the wedding/honeymoon ones. I just thought I'd share my story, I guess it'll help me get it out....

In may of 2004 my (then) 42 year old father was diagnosed with Amyotrophic Lateral Sclerosis (ALS or Lou Gehrig's disease). The first two years had gone ok. Earlier this year my father started to loose his ability to walk. Really he had no other symptoms that were too prevalent. His speech was worsening, and his hands were getting weaker, but ever since like the 2 year mark, he has gotten more and more progressively worse. In june of this year my father fell a few times (even with use of a walker) and decided that he could no longer work. Now, his job was very much his passion, but he decided that it was becoming too hard on his wife and younger daughter to deal with getting him up and helping him get ready for the day. In doing so, my mother also had to stop working to take care of him. She needed to be here in case anything were to happen to him. I was very lucky that my father was able to walk me down the aisle. It was a 100 ft walk, and took us about 4.5 mins to complete, but in August of this year we did just that. However, since then things have only gotten worse. My husband and I moved in with my family (into an apartment in the full finished walkout basement) to try to help take care of things. The stress is slowly becoming too much for all of us. Recently my father was hospitalized for a bronchoscopy (sticking a camera into the lungs to make sure no food was stuck) and we have had to start feeding him all of his meals because he could not do so. My mother has become extremely depressed through all of this. She has many times suggested that she has had suicidal thoughts, sometimes even in front of my 10 year old sister. Lately she has stated that she feels like she is no longer a wife, she is his caregiver. They (my father and mother) have fought more and more lately. I am trying to deal with all of this and it's becoming very difficult. I am a student and my husband has been laid off and unable to find another job. I seem to work all day, and then again work all night. And on top of it all I'm trying to deal with the fact that the man that raised me, that I was so incredibly close to, is loosing his ability to function. I almost feel like he's not even there anymore. I just don't know how to deal. I want a normal life with my husband, however, its increasingly difficult because of my own mental state. Sometimes I am perfectly fine and strong, but at night I tend to just break down. I just need strength to get through this all, but I don't know how to find it. I am a deeply religious person and I have tried to keep faith and pray for strength, but I feel incapable of having it. I am trying so hard to please everyone, I feel like it's almost impossible for me to be joyful anymore. I just don't know how to handle this all. I love my father and my family. Soon he will be getting a feeding tube, and possible not much longer and he will go on a ventilator to make him breathe mechanically. Any experiences any of you have with this disease or things like these would be very appreciated. I guess words of encouragement would also help if you feel like giving them. Thanks for reading...I know it's probably not entirely a coherant story. Thank you.

 

[Pea-n-Me]

Life can be so very difficult sometimes. I'm sorry you and your family are having to live through such a stressful and sad experience. Two families I know have lived through ALS recently, also; their loved ones have since passed.

Is it possible for you to get some help with his physical care, like from a home health aide, or other family members? Even a little help and support can go a long way. Sometimes people want to help but don't know how. If they ask, tell them how they can help you. Be specific. Maybe even some help with meals or cleaning would be a help to your mother. There must be things that need doing around the house since your father cannot now do them. Keep a list handy. A night out now and then would do you good, too. It will be harder to do once he goes on a ventilator, so now is a good time.

Is there an ALS support group in your community? It would probably be helpful to share your experience with others who've lived through it, too. They might have ideas you haven't thought of or other resources you don't know about. I'm sure you've seen this ALS website: http://www.alsa.org/

This won't go on forever. Unfortunately, there will be an end point. It's not an easy road, but then again, many things in life aren't easy. I'm sure it's hard for your father to depend on others as well. But we all have to take care of eachother and do what needs to be done when these things arise, as difficult as it is. I will keep your family in my prayers. I hope you can find some support for yourself and your family.

 

[Mackey Mouse]

I know how your Mom feels although I am not the caretaker right now that she is.....my heart goes out to her and to you.

Your Dad goes to a hospital for check-ups, I am assuming. Talk to his doctor and ask him to have the social worker come and speak with you, this is what they do, help families in need. Is there a support group at the hospital you are going to? That could be a start for you both, also you may need some counseling to help you deal with this and your Dad may as well. Seems to me that they are always asking my husband if he would like to talk to someone, so far he has said no, but they ask. Depression is a key part of these illnesses and there are people in place to help families cope. It is not good that your Mother is that upset, not good for you and your sister, not good for your Dad and mostly not good for her. You may have to be the one who steps up here and gets the ball rolling for some help for your family..

At any rate, come here and talk it out whenever you want.....we will be here for a sympathetic ear and whatever guidance we can give. In the meantime, I will be praying for strength for you and your Mom and of course I will be praying for your Dad too..

Take care of yourself as well, sounds like your family has way too much on their plate and there is help out there, you have to ask for it.. Start with his doctor and hospital.

 

[buf68]

Thanks guys for the support. My dad is having a feeding tube put in next tuesday. He's been really scared lately. My mom is having an extraoridinarily hard time dealing with everything and is taking it out on all of us. My dad even asked the social worker at his last doctors appointment about his options if he feels not cared for or unsafe. He is very scared about the risk of infection the PEG tube poses. If my mom doesn't take care of it right then he's going to get an infection and that won't be good. I've never known anyone with a feeding tube, so i'm kinda nervous about that.

Diseases like this are just so hard on everyone involved. I'm trying to think of a way to get out of going to class (i'm a student) so I can be there with him when he gets it. I just, this is so hard to deal with cuz he says "no it's fine, go to class, we'll be fine" but my mom wants me and/or my husband there. I don't know if it would be wrong for me to not go...like if i'll feel guilty or what. Do any of you have any experience with a PEG tube? It would be nice to know something about it.

 

[escape]

buf68,

I really don't have any words of wisdom but I just wanted to let you know that I'm thinking of you and your family.

I agree with the comments made about getting other family members and friends involved. Sometimes, just getting away for an afternoon or a few hours can make a big difference in your mental strength. As others have mentioned, a social worker or your doctor might also have some suggestions. Don't be afraid to ask people for help or take them up on their offer to help. If someone asked me to help out, I would do it in a heartbeat and be glad they asked.

Sending and prayers to help you through this difficult time.