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Sandy,
So good to see a post from you now that November is here! I hope you have a great weekend, the weather here is unbelievable- supposed to be 71 today! Not bad for November, huh?
take care,
talk soon,
brenda
 
Sandy,it would also be great for public awareness for ALS. There has been books written by PALS that are a great inspiration. One must read is the book written by Dennis Kaye called " Laugh, I thought I'd Die" . It is an amazing book to read. Kaye called his humor his weapon. I quote from his book.

" My message is simple: lighten up, Humor is fail- safe, free and if you look closely you probably already possess it."
I'm gradully getting used to the idea that I might not be as weak as I thought. I'm coming to realize that true weakness is, for some, the inability to see themselves in anyone's shoes but their own."
"Each day I look in the mirror and see a bit less of myself, so it's very easy to slip into a state of self-pity. While some may think I wear my sense of humor as a shield, I prefer to think that I brandish it as a weapon."

I have found that PALS do possess something very special, I have read many articles and stories by PALS and really hope that more try to express themselves in this way.
I have a binder full of ALS articles and stories and I so much tried in different ways to push public awareness for ALS. This is probably to reason I'm back to this forum. I so much need to get involved with this awful disease. The idea of the number of people going thru this horrible disease makes me so angry. I get especially angry when I hear someone say, "What is AlS?. I better not keep going on and on. Don't be silent.

Have a great day!
Your dad is lucky to have you by his side.
 
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What a day today, I'm wiped out! I got up early and went to my niece's soccer game, then lunch, then to see my new nephew (see attached pictures) and then home to do homework and then took my 19 year old son with me to visit Dad. My son usually doesn't want to go but tonight he jumped on it when I told him that my brother & his wife were taking the baby (my son hadn't met the baby yet). So we got there as they were leaving and my son got to see him. Then into Dad's room and my son seemed fine in there, but disappeared on me. I figured he couldn't handle it so I said nite to Dad and went looking for my son. Found him outside sobbing his heart out... he hasn't seen Dad in several weeks and the decline is immense. I notice him getting thinner on my daily visits and actually had skipped the last two nights so tonight was a little shocking to me too. All bones, eyes unfocused... horrible to see for ME and I'm there every day. Absolutely crushingly devestating for my son! I held him for half hour while he cried and talked about how he can't remember what his grampa used to look like, or his voice, or any of the stuff we used to do together. He said seeing like that is all he can see right now and it hurts. I know what he is talking about, of course.

I told my son about the book I'm going to put together and he was glad to hear that. We talked about how this is not what Dad will want us to remember about him and I promised him that with time, we will be able to remember how he was "before". Before ALS took his voice, his hugs, his pats on the back, his ability to send us silly email messages, his ability to make us laugh til stuff squirted out of our noses, his ability to laugh and smile... ALS took that but it was there before and once we are all past this we will remember how much his personality shined and lit up our lives. I know that this project and talking about it with him made him feel better. After we left Dad's my son told me that he doesn't know how I can take seeing him all the time, doesn't know how I manage to hold a job and go to school and function at all. Interesting to see how much he respects me for being loyal to Dad... and sad because his shock made me feel better for being so messed up in the head lately about things. I was feeling weak and disloyal to Dad for my feelings but my son showed me how normal it is to be hurt by seeing Dad this way.

I know it can't be long now, Dad had his eyes open tonight but there just didn't seem to be recognition there... it was eerie. I'm glad that he got to see the baby tonight, it will be the last time I feel. Tonight may be the last time I see him too, I left there with a really strange feeling, like he wasn't there anymore... there just wasn't anything behind his eyes :( I wish I could cry like my son did, he just let it all out and afterwards he looked lighter, cleaner, refreshed. I am jealous on many levels.

Take care,

Sandy
 
Sandy,
My prayers are with you and your family. Rest well my dear,
Regards,
brenda
 
Sandy, it is hard when you know the end is near. I pray for you and your family. I'm giving you a big hug. God bless you and your family.
 
Dad is now on a Versed pump to go with the morphine

I wasn't surprised to get a call from Hospice today asking permission to put Dad on a Versed pump. It's anti anxiety, and then some. It erases your memory of what is happening to you... so today was my last chance to say goodbye to my father. I left work early and I went and told him all the things I wanted to tell him about how it is okay to let go and how much I love him, thank him and that he is the best friend I ever had. I told him that his mom and favorite aunt are waiting for him, surrounded by the souls of all the animals that he sent to keep them company. I told him that I would be okay, that I would be sad, cry and miss him but that I'll never forget him and I'll be okay, he'll be okay, we will all be okay and happy for him to be with his mom in a peaceful place. I cried, I kissed him... he didn't respond or react in any way. His eyes are in outer space and though I tried to fool myself that he was looking at me, deep down I know he's not. But I told him and maybe he heard me.

I stayed a few hours and then they hooked up the Versed pump. They are leaving him on morphine also and he will likely be in another world from now on. He certainly won't be cognizant of any visitors anymore. I'm glad that my brother & his wife took the baby to see Dad one last time yesterday.

This morning a young man held up traffic here in town and upset a lot of people. He stopped his car on an overpass, was wearing fatigues, a face mask and holding an American flag and a gun. They had to shut down the freeway for a few hours, as well as a couple of main side roads and they called in the SWAT team. Fortunately, the police were patient and it ended well, with him putting the gun down and surrendering to them. Before that happened though, he hung his flag on the overpass along with a sign to vote for Obama & Biden. People at work were late, some up to two hours late, and they were upset. One person even told me that they wished he would just shoot himself and be done with it. I asked her why she said that and she said "well he held up traffic and made so many people late for work!" I asked her if her feelings would change if she learned he was a vet who came home to a messed up economy, a house taken away because of mortgage fraud and a lack of health care not just for his family but for himself as well even though he has devoted himself to his country. She just shook her head and walked away. Turns out he IS a vet, is anti-war and wanted people to stop for a moment and listen. He risked his life in the war, and then here today, and people are angry because of the inconvience. Weird how much I get him right now...

Going through this with my Dad has showed me how the things that matter to so many people, including my own pre ALS self, really don't matter anymore in the face of death. When someone you love is dying you stop, notice, listen, care and it changes you. As painful as this process has been and as much as I feel I don't know or like myself at times anymore, I know that I have learned so much and will never be the same person again. I'll never get so caught up in any rat race that I will forget to stop, notice, listen & care. I think that you all know what I mean.

We see it every day around us, what happened today with this young man on the bridge, but we see it even more up close and personal in hour the friends & family of our PALS are so caught up in their own lives and the petty ins & outs of day to day that they don't make time. In some cases they seem angry at our PALS, or us, because the situation exists in the first place. They are the angry ones that don't want anything rocking their apple cart. They are the ones that won't learn or be blessed. It's a shame, but it's their loss.

Okay, I better walk away from they keyboard... been a wacked day.

Sandy
 
Sandy - so sorry to hear how it is for your dad. You'll be in my thoughts tonight.

Sharonca
 
Sandy,
There is so much I thought about after reading your last post. I just want you to know I am thinking of you..your Father..and your family. Fondly, KR
 
Sandy,
May your father find total rest when God is ready for him, and may you find comfort in your memories,
we keep you in our prayers,
brenda
 
Thanks ladies :)

I thought I was waiting before, but this is another story. No interaction with my father is going to be very difficult for me. He won't even know when people are there with him now. What sucks most is that life goes on as normal... I have to go to work today, I have to take my stepdaughter to singing practice, life goes on and things have to get done, bills have to get paid.... but all I want to do is sit here or climb back into bed and dream about going on an adventure with my Dad. During this I have to keep my depression in check, not an easy feat!

Have a good day,

Sandy
 
Sandy, I am also praying that your dad finds peace. Keep talking to him, I am sure he hears you. Take care of yourself.
 
sandy

My kind thoughts are being sent to you right now - i hope you both find peace in your own time

Kind regards

Flowerpot
 
Sandy,
I hope you and your Dad find peace soon. You are a wonderful daughter...keep talking to him, I am sure he hears you.
Your idea of the book is wonderful. I bought my husband one of those small hand held camcorders (the FLIP) and he is making a video diary. He still has his speech and I hope that lasts. He is a singer and if he is unable to sing and play his music, it will be a real tragedy.

My thoughts and prayers and with you and your Dad.
Lin
 
When my mother was in the state your Dad is in we sat around her bed and told stories and shared about the events in her life. Friends came and went. This went on for days. Very comforting to me and I hope that she heard our words of love and laughter about her life. If she heard us she would know she was loved. The caregivers at the facility where she lived also came by every 15-30 minutes just to give her a kiss and tell her they loved her. Very special memories.

Sharonca
 
Dear Sandy,
There are no words, my heart breaks for you for all you and your dad are going through. I am sure he is so proud that you are his daughter and have token such wonderful care of him.
You are in my thoughts
In friendship
Jeannie
 
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