Father in law was diagnosed with ALS

[crpalmtree]

Hi Everyone,
This is my first time posting here and I was searching for people to talk to about this. My father in law was diagnosed with ALS recently. I'm so heartbroken and I hate watching my husband see his dad go through this. I really just feel in denial right now. Like, I can't believe this is happening and I really don't know how to deal with this. (I hope that doesn't sound insensitive). I just don't know what to say to my husband or what to do to make it better for him. I feel like I don't know how to deal with the emotions that go with this a loved one having ALS. My husband has been very depressed over this and I think this is his time to cope with his dad's diagnosis. They told my FIL that he has a max. of 4 years to live, but he has the ALS where it starts in your mouth. He's had slurred speech for several months and can barely talk now. I know you're all going through this.. but I just feel like I don't know how to feel... or what to do... or I just don't know I just really needed to talk, but anything you can share with me would be great. Thanks again for listening.

Carrie

 

[Rose554]

Sorry Carrie that you and your husband have to deal with ALS...not to mention your FIL. Everyone progresses differently, no one is the same but this is a great place to acquire information straight from those affected by ALS. My Mom's ALS began in her foot, she started falling here and there eventually ended up with foot drop. After attacking her legs, one more than the other it moved up to her mouth (aka Bulbar onset). She was slurring words, others could notice one side of her mouth drooping. Then swallowing became difficult, which was mostly the ALS attacking her tongue. She elected no feeding tube, no vent or trach.
It's ok to be mad initially, once the shock of it all wears off it's time to stay ahead of the game. I concentrated on getting Mom equipment, supplies, etc before she required it. Know every day could offer something new. Dad at 82 had a difficult time switching gears with each new issue that arose. I ended up retiring to help him care for Mom. There was no way he would have been able to do it himself.

Rosie
Rest in Peace Mom
12/1/31 - 10/20/10

 

[crpalmtree]

Hi Rose,
Thank you so much for your reply. You're right.. it's ok to be emotional at first but your advice is what I was looking for. I guess I was just wondering what to do next and how to help our family cope and, I think that is great advice to start figuring out how to help and be ahead of his needs. I'm sorry to hear that your mom went through this, too. My FIL does have the Bulbar onset that you mentioned. He did begin losing his balance also, so it sounds similar to your mom. Thanks again for responding.
Carrie

 

[Rose554]

Carrie,
With Mom, when she was walking with a cane, I started inquiring about a walker. When she had a walker, the ALS Assoc Loaner Closet loaned us a wheelchair. Wasn't long after that, she was in the wheelchair whenever transportation was required. She elected not to go the feeding tube route, on line I found Benecalorie (330 calories) in a small container to add to her liquid meals. Transfer boards were useful for moving Mom in and out of shower, commode, bed, car, lift chair etc. This forum as well as our local ALS Assoc were the most useful points of information in preparing me for what could be next. Mom had Kaiser ins and we weren't happy with her neurologist. A forum member mention how wonderful her husband's Kaiser neuro was, we hunted him down and obtained a referral...she was right her husband's neuro was fabulous. Well worth the hour and half drive and more importantly Mom loved him too. She also had a Bipap, a suction machine and a cough assist machine. Three very important pieces of equipment for ALS patients. Basically if Mom mentioned she was having difficulty with something, I would search on line for something to make her life easier...Magic bullet to puree her food, a bar along her bed to help her sit up, a step to help her get into my SUV or bed, a dry erase board because Dad and I weren't very good at charades. The list goes on...I picked up books from the local library for her to read, DVD's for our Monday Movie Days or CD's for relaxing music. I took her for walks in the neighborhood or just rolled her out to her backyard where my daughter had planted tons of flowers for her to enjoy. Sometimes it's the simple things that makes all the difference in the world. We shared tears but we also shared laughter, I loved that I was able to make Mom's past 12 months easier for her. Carrie, you and your family have my prayers, I'm sending my acquired strength your way. Blessings to you, your FIL is fortunate to have you in his family!

Rosie
Rest in Peace Mom
12/1/31/ - 10/20/10