Please help - Dad's dx confirmed

[JMH]

Took dad to the ALS specialist on Tuesday. This doctor did an EMG and I think nerve tests as well as a thorough exam. of my dad. He confirmed the ALS dx. Gave him a form to fill out for Rilutek and ordered blood work. He said dad could go for the MRI but didn't think it would alter his decision. Said he would put us in touch with the ALS society.
My dad's wish is to stay on the farm - I think he fears abandonment to a care home or hospital. I promised him he could live in his own home as long as possible. Now I just need to go about making that possible. I hope that it is. It was heartbreaking to see him go through the tests and have them confirm the dx.
The disease seems to be progressing quickly and I am so scared - I know he needs changes made to his house i.e. bathroom reno. etc. but he is hesitating at suggestions that we start these things soon. My dad has a lot of pride and I think it hurts him to have to give in to this. I tried to talk to him about deciding what he wants to do about med. decisions, etc. He says he can't decide but I don't think he realizes how important it is to take care of certain things quickly. Any advice for me?
JMH

[Jane]

Hello JMH, I am so sorry you and your family are facing this awful disease.
My sister wanted to stay at home throughout the course of her ALS. We were able to take care of her with help from many sources. We started with CCAC (Community Care Asscess Centre) which gave us X nu;mber of hours of care. Later we were able to get more care time from the paliative care team. I don't know how these things work in Manitobe, we are in Ontario.
You are quite right about getting things organized and in place BEFORE they are needed.However I would suggest that you do not try to take care of everything eventuality at once. Work through each problem as it arises. Some thinks like communication devices should be done while speech is still possible allowing the person time to get use to devices before they have to use them. l A feed tube needs to go in before it is needed as well, If too much weight is lost it becomes impossible or very difficult to do this procedure. (If this becomes neccessary, don't be too worried it is not so bad either to put in or to maintain)
Register with your local ALS Society, they will be able to help with many things. You will have access to the loan closet. This allows you to get equipment on loan for very little money (we had a lift chair and paid something like $35.00 for shipping ) There is much equipment available through the closet. Your O.T or P.T will be able to direct you in these things
Another thought, perhaps ceiling track lifts would work instead of making expensive bathroom modification.
I hope that some of this is of help to you. The forum is a great place to get info and to "let off steam" when things get to be too much
take care
Jane

[Al]

Hi JMH. Sorry about your dad's diagnosis. We were like you hoping for something else. When you get the diagnosis a lot of things go through your mind. It might not hurt to give your dad a week or so to let things sink in before needing to make decisions. It surely won't hurt and will give him time to wrap his thoughts around it. If he brings it up then of course discuss it but I'd give him a few days at least. You do have to make decisions early but a week won't make a difference but t may to his attitude. Good luck. AL.

[saras_daughter]

I am so sorry that it seems that so many of us are hit by a train called ALS like this.

I know with my SUGAR MOMMA, it seemed like I turned around, and she was gone...although she suffered so, and I am sure it seemed more at the time...but now, she was just taken away wayyyyyyyy too soon she was an amazing woman...

take your time to soak this up, I did this by sitting in my van & just thinking about what it ment for us all....I decided the thing for me to do is put my whole life on hold & care for this woman, like she deserved. 'Her children rise up & call her blessed' (Proverbs 31)...and I do not regret it for a moment.

I know that a lot of dr's treat you like this is a death sentence, but I instead look at it as a way to make sure that everything gets said...we get to have every minute we can together, and we are so blessed that way!

look at what you have my friend...believe me, since Mommie has been gone, Ive had enough time in the world to soak up what I do NOT have........

I am here for you should you need to vent...just hollar

[Barbie4]

Hi there:

I am so sorry to hear that your dad has been dx with ALS. The first few months are unbelievably horrible. It really doesn't get too much better as it sinks in.
The best advice someone gave to me when my best friend was dx in March was to "let her lead the way". I was so overwhelmed about what had to be done and felt almost panicked and she needed to take it slower. I now live by this advice and let her talk about what she is capable of enduring. She has times when she just can't deal with the reality of it all, and other times when she is so strong and focused, she amazes me. Al is right, give him some time to sort this through in his head. You need some time to do this as well. Good luck and stay strong.

Barbie

[SoniaT]

Hi,

I'm so terribly sorry to hear about your dad's diagnoses.

My mother lived with me and my husband and our 6 cats and had ALS. She was clinically diagnosed with Pseudo Bulbar Palsy in July of 2003 and on October 24, 2003 had an EMG which confirmed for sure that it was ALS. The Neurologist cried as he told me and my husband (I had never seen a doctor cry before!)

I tried to remain calm at the hospital but when I got mom settled away in her room I freaked out!!! When we got home I began searching the internet like a mad woman! When I learned as much as I could in the state of mind I was in I realized I had to do as much as I possibly could to care for her. I got in touch with the ALS Society here in Vancouver and they helped me learn to do a lot of things for her.

My mom didn't like to talk about death. She had been a Cancer survivor and had many other medical problems that the neurologist believes masked the symptoms of ALS. She was tough and thought if she could beat Cancer she could beat ALS!

The only thing I knew she wanted was to be cremated. We had to have her Will drawn up while she was in the hospital, because she wouldn't talk about that either. I believe it's vitally important to get a Living Will, a regular Will, and Power of Attorney as soon as possible.

I know it sounds brutal and cold to talk about such things but if there is any way you can get certain things done please do it. It will save you and your family a lot of heartache later on.

All I can leave you with now is ... I consider it an honor and a privilege to have taken care of my mom. If I could do it over again I would just do it better!

Sadly, very sadly she died November 8, 2003. Part of me died with her.

God bless you and your family.

SoniaT
Vancouver, BC