Father newly diagnosed

[starente]

Hi all,
My father was just diagnosed with ALS last week. Needless to say the family is struggling. I am terrified at this point of everything that may be to come. Can anyone offer some words of comfort or education that might help me think more clearly at this time? Thanks so much.

 

[slopokahontas]

Glad you found us, sorry you has to. You found a great group! As everyone told me, first breath, allow yourself to feel the roller coaster feelings. Will you be his caretaker? What I needed most at first is to have an open ear to ramble as well as hearing my loved ones rant. I had to tell my family to stop acting so tough for my benefit. There is so much confusing information on the internet, so it helps to bounce ideas and questions off others here. Make every day count, a great life motto even without ALS in it!

 

[starente]

Thank you. I am not the caretaker, nor do I live nearby (I'm his daughter). We are definitely on the roller coaster ride.

 

[LoveMyKids]

I'm sorry to hear of your father's diagnosis. It is a struggle and a sucky roller coaster ride but we fight to enjoy each day. Don't overload yourself with too much thinking. Being informed and making plans is good but try not to let it consume you. You are not alone.

 

[davbo49]

get all the time in why you can. hes going to need more thin anything right now. each day i wished i had more time with my dad.

i am so sorry for all that you are going through.

 

[GregK]

Make sure your family contacts your local ALS Association. The ny/nj website is www dot als-ny dot org

Is your dad a veteran?

 

[MaxEidswick]

>Is your dad a veteran?

very important question! even those in for 90 days ...

 

[cheerleader]

Starente, things will calm down after a while for your family. Remember how devastated and helpless our daughters felt when they heard their dad's diagnosis! Just call regularly, visit when you can and know that you have time to still make memories with him. Come to this forum to rant if you need to. We all understand that ALS sucks!

 

[gooseberry]

Spend as much time with your dad as you can...watching a ball game, seeing a movie, talking about the news...it doesnt matter what you do, just be together. The hardest thing for my husband are those that wont come around because he is sick.....when he is home alone he would love for someone to watch a game with ...

Mostly just treat him like you always have. Things will be changing by the day so the changes could be significant if you dont see him for awhile. Skype or facetime with him, try to get him to eat regularly, just listen. And know that we are all here to listen to you, to answer your questions, and be a shoulder to lean on.....we have all been there and the first few weeks are hard.

 

[starente]

Yes, he's a veteran. I'm having a lot of anxiety right now and finding hard to cope. Tried meditating earlier but it didn't help much!

 

[GregK]

Yes, he's a veteran.

Call these people ASAP:

PVA National Service Office

Newark VA Regional Office

20 Washington Place, Room 433
Newark, NJ 07102
973-297-3228​

No joke: call ASAP!

ALS for a vet gets a 100% disability rating

 

[pearshoot]

If on face book contact richard theide for help

 

[affected]

I can understand how hard it is for you to cope.

Can I gently just say this?

I tried to encourage Chris's adult children to do as many things with him as they could.

His son took him fishing ONCE.

11 months after diagnosis and he was gone.

One daughter told me if I wouldn't stop being so negative she wouldn't even come for his birthday dinner (which of course was his last birthday). This was in response to me being disappointed that at the last minute she declined to come and take him out for the day after all and I had cancelled home services. He was gone 3 months later.

My heart broke for them constantly. I was as least as concerned that if they didn't spend time with him while he was mobile and they could understand him speaking (though his speech was the first to be affected), then they would always regret this later.

I wonder if this does play on their minds now, I sure don't ask them as I don't want to seem like I would be accusing them now that I tried to get them involved.

So, what I'm saying is - you are heart broken, I know it, I was also heart broken. You are going through the first stages of grief and shock, be kind to yourself. Find someone to talk to, rant and scream and rage and get that out. Once you are dealing with it, start to think about what can you seriously do to build great memories with your dad while you can.

If he still has several years ahead, you will build a huge stack of them! If not, you will build as many as you can.

These don't have to be elaborate, costly things. But the only thing of value that we have when on our deathbeds are the memories of love and happiness. Bank them up!

 

[MaxEidswick]

>Try to find some old Shipmates.

synched up w/my old schief

 

[Nuts]

You'll find information and tons of support here. As Tillie said, make time to spend time with him. It will become increasingly important to both of you. My husband always insisted that our bedroom was off limits to the kids--it was our space. Last weekend our two 30-something daughters crawled into bed with us and the four of us watched a movie together. It was magical, even when he fell alseep 30 minutes in . Two months ago none of us would have expected or believed it would happen. If you can't be there in person, call, and schedule visits when you can. I find myself leaning on our children--physically and emotionally. Be there--for him and for yourself.