Telling Mom

[Jimmy's sister]

Hi, I am new here. My younger brother Jimmy, age 49, got his dx of ALS a few weeks ago. It was also the day my mom had surgery for a collapsed lung. Although she is in the end stages of emphysema, she is recovering quite well. Jimmy did not want to tell her but as her health improved, he knew he had to. Jimmy had made arrangemnts with the social worker at the nursing home and our pastor to let them know he was going to tell her. We sat down with her and explained what was happening. It was so hard to do. I think she understands. I am trying to be there for my brother and his family, but I guess I am scared. I have been reading posts here to get an idea what to expect. Jimmy has a family and lives about 2 miles from me. I took early retirement from teaching due to Fibromyalgia. Thanks, for this group.
Jimmy's sister

[BethU]

Hi ... I'm glad you found this forum. Our wonderful caregiver members will be able to give you lots of information, and we will all be with you.

I'm really sorry about Jimmy's dx. That's so young to have to deal with this. You were all so sensitive and supportive in telling your mom ... it sounds like you have a great family. I just wish you weren't having to go through this.

I'll keep Jimmy in my prayers ... and you, too.

[thelma313]

Hello... being scared is totally normal. You will notice that you will accumulate more and more courage along the way. My dad was diagnosed in August and for the first 2 weeks, I was terrified and I cried almost 10 times a day. As time has passed I feel more and more able to fight the good fight with my dad.

I am so so sorry about your brother's dx. 49 is way too young. So unfair. You definitely came to the right place. The people here give amazing advice. Take good care of yourself and know that you are not alone.

[Zaphoon]

Sister,

With your Fibromyalgia, your mom's emphysema and Jimmy's ALS, the family has a lot on its plate. Please feel free to lean on those who have chosen to help, including those of us on this forum that love to give any encouragement we can.

Zaphoon

[DeeMichelle]

Jimmy's sister
Well done for putting it all so well and succinctly. This is such a lot to deal with. I'm really sorry that your brother has this so young. Remember you can ask for help and accept help where ever you can get it- save a little something for yourself. Your love and your loyalty to Jimmy and your mum comes across loud and strong!
And it's so true that people here love to help...
Donna

[Jimmy's sister]

I think Mom finally realized what this is all about with Jimmy and is willing to go to the assited living facility rather than her own home. She lives 5 houses from me....yikes!
I also think Jimmy is relieved to get that part over with. I try to call him through the day when Barb, his wife, is a work. She is an RN in a cancer treatment center and works part time at the dialysis center. Has anyone tried aqua therapy? We have a warm water pool in Williamsport that I used to go to until they changed the chemicals in the water.
Thanks for all your support...it is great to hear from other with similiar situations.
Jimmy's sister

[Al]

Hi Jimmy's sister. Aqua therapy might be beneficial for keeping range of motion in the joints and muscles. The only problem with pool exercises is that sometimes as the breathing becomes compromised you might not realize it until you get chest deep in the water and find that you can't breathe very well. Tell him to be careful at first.

AL.