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supergirl

Member
Joined
Jun 27, 2006
Messages
12
Reason
PALS
Country
CA
State
Alberta
City
Banff
My mom has ALS and I just want her last years to be full of love and happiness and energy and fun, but there is so much tension. It makes me so worried and sick. Mom's husband is not caring for her emotionally and there have been huge fights about how he is treating her. I have fully involved myself in these fights on the side of my mom trying to defend her....but it just gets messy. How can I fix their marriage? I shouldn't be getting involved, but I need to do everything I can to make my mom the happiest ever and she is just so worn out, she can't work it out. She just wants to settle for whatever she can get from him, but I will NOT let her settle for a medicre life! She needs to live like she's never lived before! She needs to be free and happy! I arrnaged for a family counselling session, and he originally said he would come, but then changed his mind later. The counsellor came and sat with mom and I, but she only came twice saying "there's little I can do about your relationship if he does not come to these counselling sessions". Is there some counselling that the ALS clinic offers? We need some serious counselling.
 
Hi Supergirl. Perhaps you are right to look elsewhere for the counseling you seek for your family. There are a lot of issues that a family with a PALS faces, and the people who take care of them as well. Too bad the counselor who saw you and your Mom didn't tell you that all of you can still benefit from learning new ways to deal with your Mom's husband's behavior, even if he refuses to go to sessions. I hope you find someone to work with your family soon. You deserve some peace of mind.
 
Hi supergirl

Hi and welcome I don't know where you live but the ALS Associations or clinics have counseling available for patients and their families. I would contact your local ALS clinic. I hope you find some help you all need the support. My Best to you, Beebe
 
I know this is a little off topic, but can you scrape together the money to go on a trip, maybe a cruise? There are several groups around that specialize in disabled travel. This would give your mom some time away from her husband, give you the opportunity to do something really nice for her, and build pleasant memories for you both. Just an off the wall idea.

Mike
 
Supergirl -

Even if you can't afford a trip, can you just take your mom out for an afternoon say for lunch, shopping, or a movie? We don't need our husbands' permision or participation to get out of the house. Do what you can with and for your mom. If her husband comes around great, but don't wait for that to start doing what you can with her. Let your mom define what counts as a good quality of life for her.

ALS Centers offer caregiver support, not marriage counseling. Maybe your mom's husband will find this more agreeable. Or maybe you'll find it helps you to deal with the situation.

Good luck.

Liz
 
Yeah, I'm inclined to agree. If he isn't going to be supportive, then t'hell with him.
Just look after her as if he isn't around. It's not a time for petty nonsense.

Maybe a visit to an ALS clinic where he might understand just what the Reality of your Mums situation is will shake some sense into him.
 
I heard somewhere that we can't change another's actions - only our reaction to them. We might not want to write him off totally, since most people can and do learn new ways. But Liz has the idea - go have fun with Mom. Only good can come from that!
 
Mother Has ALS As Well

My mother has ALS. She was diagnosed in May of 2005 at the age of 47. It is so hard seeing her body deteriorate like this. I still have a hard time believing this is really happening, even though she is now in a wheelchair & it is very difficult to understand her when she speaks. She has familial ALS so now I worry that I might also get this dreaded disease. I love her so much and this is the hardest thing I have ever gone through. I worry about what the future holds, and my biggest fear is the day when I will no longer be able to talk to her.

There are no ALS support groups in our area. I have contacted the ALS Association & unfortunately they don't have programs everywhere. We saw a psychiatrist to deal with some of these issues but they were too "professional" .... meaning, she was just a patient and not a person. And if you don't have the money to pay they won't see you.

So my mother found a spiritual counselor through a church & he comes to the house a visits with her. He is wonderful & she always feels better after he comes by. He does charge a nominal fee, but told us if we can't pay, DO NOT WORRY ABOUT IT ... he also tells her to call him whenever she needs him. Maybe you could call around to local religious institutions (churches, synagouges, mosques) and see if they have a spiritual counselor. I feel certain you could find one.

Kelli McCoy
Aiken South Carolina
 
Hi Kellie. Welcome to our forum. Sorry about your mom. I'm not a terribly religious person so I usually don't think of the church as a place for counselling. Thanks for the reminder. AL.
 
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