Looking for someone to talk to

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WMS10

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Nov 26, 2014
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34
Reason
CALS
Country
US
State
virginia
City
Virginia
I am a 44 year old male. My wife was diagnosed 3 years ago, she is currently on a ventilator and barely hanging on. We have 3 young daughters.

I would love to find someone in a similar situation (male or female) to talk to. Have plenty of family, friends and have tried therapists........but hard for anyone to relate unless they've dealt with the horrors of this dreadful disease.

Anyone out there?
 
You'll find lots of help, humor, advice, etc here
 
Hi WMS10, so sorry you have had to join our club!

You will find many CALS and past CALS here and you can talk all you need.

This new thread you have started is a great place to begin the conversations, so maybe tell us a little about your situation. At least you don't have to explain things in great detail, we do get it.
 
I am 47 and I have a 12 yr old son. My husband, who is 57, was diagnosed in May 2014. He presented with a left paralyzed diaphragm and phrenic nerve involvement......his breathing was difficult and vital capacity at 42%. 6mo out he has about 20% funcion in his left shoulder and right hand. He can still walk but the atrophy in his legs is marked. He uses a wheelchair whenever we go out. My son struggles with all th echanges. He is in 7th grade an dealing with a.lot of anxiety.

We are here for you. Some will have similiar challenges to you. We all support and help each other.
 
Hi! My name is Kim (Skipper). My 80 year old father has ALS. He was diagnosed two years ago this past May. He has limb onset. My dad can take a few steps with alot of assistance with somebody standing directly behind him and holding firmly to his gait belt. He is still able to eat on his own as long as he takes small bite and is not distracted. He used a bi-pap when first diagnosed but hasn't used one for quite some time and his breathing has remained pretty good. He still talks pretty clearly unless he is tired or something upsets him. He has lost alot of use of his arms and fingers. it is very hard for him to grasp anything.
I am not my dad's caregiver so I can't give you advice as well as others on here. I get on here for emotional support though and friendship. I am very close to my father and saw him about every single day of my life. I am 48. My dad was a very active part of my kids lives. He helped my husband and I take care of them in many ways and just plain was there for all of us on everything. Unfortunately, we tried getting homecare for my dad in his home for awhile. Actually, a family friend did it for awhile but it got too much for him. We live in a small town and couldn't find anyone we trusted to care for him. So, my dad moved to Dallas where my brother and sister both live. He is living in a assistant living facility there very close to my brother's home.
It has been extremely hard for me to be so far away from my dad. My dad misses us terribly. My kids miss their grandpa. It is just so hard for all of us. When dad just gets a little cold I panic being so far away from him. I try to visit him as much as possible. I live in Illinois though so it's a long haul.
Take care and if there is anything at all I can help you with let me know. Prayers, Kim
 
WMS: I'm Mike. I buried my wife 3 years ago. She was 50. I've been raising two teens.

My wife was a doctor, and guided her own life with ALS, then guided us in how to care for her in the last months. Her final days were relatively calm and peaceful with everybody pitching in. Since then, we've recovered quite well. It can be done.
 
Hey and welcome! Sorry you are here, but believe me we DO understand and won't judge you. My husband has ALS and was diagnosed almost 8 years ago. He is 54 now. Our kids have grown up with this and did ok, but it was tough tough tough. I think it is probably a little worse when mom has ALS--no offense to any daddy.

Do you have help with her or are you her full time caregiver? how old are your girls?
 
welcome i know you will find someone to talk to here. i am sorry you and your family have to be put through this.
 
I am so glad you found us but so very sorry for your need to be here. My dad is 80 years old and was diagnosed last December with ALS. His lung fuction is approximately 18% his arms are of little if no use and his legs will only support him for a couple of minutes after you get him up. He is on bipap around the clock except for meals. We have Hospice coming as well as a couple of aids to assist but for the longest time it was just me and mom. I moved back home at 35 to help care for him and am so glad I did. Everyone here is so supportive and you get answers to all your questions. My prayers are with you and your family!


Bryan
 
There is always someone to talk to here, I can't imagine what you are going through with 3 kids! My boys are grown, I have a 12 year old grandson who has handled this well, I have younger nieces and nephews who don't try to talk to me since I can't talk, it hurts but it is what it is, I try to put funny stuff on my type and speak to make them laugh. Please feel free to vent or ask questions, I do.

Janie
 
Thanks everyone for the kind responses.

I will answer some of the questions you all posed.

I do have help. My wife's sister and I coordinate care. We have 2 private duty nurses that I have hired, each works about 40 hours a week. I pay them out of pocket since insurance doesn't cover them, and we can't get Medicaid or social security. Big financial hit but I'm fortunate to have a good job so I make it work.

She is dealing with a pretty significant bed sore which means pretty strong pain killers. As a result she is unable to move her eyes which was her only form of communication. At this point it's like caring for someone in a coma. Part of me says to let her go, but I just can't bring myself to make that decision.

Personally, I've been horribly depressed. To the point of suicidal at times. She is my best friend and I miss her terribly. So hard to watch her everyday in this condition. My girls keep me going, but raising 3 girls is tough sometimes too.

Just feel completely lost.

Thank all for listening.
 
WMS10, so, so sorry for what your family is going through. ALS IS a family disease, affecting everyone. My husband passed away 12 days ago, and we are all grieving- but know he is finally at peace and whole again. We all understand how hard it is to watch the slow but inevitable death. I am thankful my hubby died peacefully in his sleep and hope the same for all the PALS. Hope you are taking some kind of anti depressant, as most CALS do. Retaining ones sanity through this is difficult- but the support of people here is a Godsend. Glad you found us. Donna
 
Donna, very sorry to hear about your husband. Sometimes words just seem inadequate to express sorrow. You've probably heard so many people say "sorry" or "hang in there". I know I get sick of hearing those things. I hope you are able to find peace. Thanks
 
My middle daughter is in 7th grade too. It's tough.
 
Oh WMS that is so hard to deal with. I lost my Chris just over 7 months ago.

In Australia we don't have the option to vent PALS. I have to be honest and say I am glad, because he went through hell, and I could not have in conscience condoned keeping someone in his rapid progression alive longer with a vent.

I am very much pro choice, I just know that for him it would have been hell - only eye blinking and bed sores.

We are with you mate, the folk here held my hand as I nursed Chris through his last days. I hope you will find that having people here who will understand anything you say will help.

I also took anti depressants. Are you on anything? I believe you NEED to do this for yourself and your daughters. This is as big as it gets, without the meds I felt like I was constantly screaming inside. The meds allowed me to feel everything but to cope with it.

Hugs
 
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