My Dad was diagnosed and I need help please

[NewJersey27]

Hi guys,
First off I'm 23 years old and never thought I would have to go through this. I'm not trying to make this about me, but figured maybe some of you can relate.

My father was diagnosed with ALS I believe about 5 months ago. He has dropped in weight from about 150lbs down to 97 lbs now last time I checked. It's so rapid and it's hurting me so badly to see and hear his grunting and groaning.

Doctors told us that he has about 25% lung strength I guess you would say. He barely eats because he can't swallow the food or even water. It's becoming very bad and very scary. I've read a few threads about how he needs to know that I can now take care of the house because he taught me and that my mother and I would be fine without him , obviously not, but meaning as far as being able to stay afloat and not living in the streets.

I don't know how to talk to my Dad and tell him this. We do have a very close and loving relationship but not like saying I love you all the time or talking "deep" like that. I want him to be happy and also let him know if he is really struggling that he can go. I really am struggling with that because I don't want to and can't imagine life without him, but I hate to see him struggle and barely or having trouble breathing. Any input is great. Thank you so much.

 

[bkite]

Sorry to welcome you to this forum. Your father is progressing very rapidly without the time for your family to get oriented to this diagnosis.
He will be able to get comfort and more quality and quantity of life with a feeding tube and a ventilator. However there is little time to delay a decision on these things.
Also, it is appropriate now for your doctor to order hospice, then there will a nurse assigned who will facilitate comfort measures.
Hang in there. There is lots of support here.

Bruce

 

[lgelb]

Hi, South Jersey,

Sorry that you find yourself here. It's a rough deal at any age.

It sounds like your dad has the kind of ALS that is called bulbar onset, or maybe respiratory onset. That means that the muscles from the chest or neck up are very weak. As Bruce said, without a tube in his stomach for food and liquids, and a BiPAP machine to help him breathe, he probably won't be around much longer. I'm assuming he already thought about it and said no, but it's worth double-checking if I'm wrong.

If he wants to stick around, or even just to be more comfortable on the way out, I would talk with your mom and his clinic to make at least the BiPAP happen very, very soon. It could be hard to find a place to do the feeding tube since it's pretty late in the game -- Newark or Philly, most likely.

Note that while hospice is an option as mentioned (that's where people come to your dad's house to help make him more comfortable on the way out -- his clinic can order that), he'd need to get things like the BiPAP and a tube first.

You don't have to tell your dad any more than what you told us. If he has known you for 23 years, he knows how you feel.

Like, "Dad, Mom and I love you and can't imagine life without you, but most of all we want you to deal with this the best way for you. Whenever you've had enough, Mom and I will be fine. We'll help each other get through. And we could get some help from hospice nurses to make you more comfortable on the way out. Just let us know what you want to do so we can help you do it -- we're up for whatever you need."

Also, my son, who went through this with his dad, is open to email or texting with you. I'll send you his email in a separate message, called a "Private Message."

Best,
Laurie

 

[Rebecca123]

Hi
I am so sorry about your dad. My dad was just told this March that he had ALS and passed one month later. He was 220 lbs and his weight went down to 130 lbs. It is painful to watch the person you love waste away and not be able to do anything to stop this horrible disease.

My family is also very close, but we don't always tell each other "I love you" because we know we do. My dad also didn't really want to talk about his illness. The last few days before my dad passed there was so much love in the room. Words came easy. My dad could not talk but I told my dad not to worry about my mom that we would take care of her. I told my dad several times that I loved him and I'm so glad I did. You will know what to say at the right time but make sure you say what you want to say. I'm so happy I did. I have no regrets.

I know the feelings and emotions you are going through and my thoughts are with you and your family. It's very hard for you and you're also so young to have to go through this. I just want you to know that all though I miss my dad everyday, I would not want him back the way he was. I feel peace now and I know he is at peace too. Sending big hugs your way!!!

 

[NewJersey27]

I forgot to add that in. I apologize. I also appreciate all of your help guys.

My Father doesn't believe he has ALS or any type of disease or sickness. He chucks it up to oh well my mom had trouble breathing, eating, and walking. Yes she did WHEN SHE WAS 96. That's the frustrating part but I also understand maybe he just doesn't want to admit and that he's dying? That's another issue for me to understand.

We did have a hospice nurse come and they denied him because he didn't fit criteria. He does not want a feeding tube or anything. He has a cough assist and oxygen that he can use. But never does because he's stubborn.

Anyway, after being denied hospice, I believe it was our doctor who ended up saying no he definitely needs hospice. So we should be starting that within a few days or so.