a blessing cont'd

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patgayle

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Sorry I read this thread after it was closed. My husband has been gone 3 months and he could have been Tillie's or Katie's PAL. It is hard to remember the person he was before ALS/FTD the harsh words on both sides are hard to forget or put into perspective. But if I hadn't realized that he had FTD (because of reading these forums) it would have been much worse. I know that some PALS go through this disease with grace, but then there are the others - So if you are experiencing a blessing because of FTD, give thanks that your PAL is in a better place than many. God bless all those with the disease and those who care for them.
 

affected

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I can't believe what a rush of things reading that brought back to me.

I still struggle - on the one hand I remember so much more of the kind, gentle, loving, enlightened soul that was Chris.

On the other hand I am haunted by these shockingly spiteful things being said and the look in his eye.

I KNOW it was FTD and not the man I loved and who loved me. But it's still hard for me to get completely past in some ways.

It was the same for me - if I had not met other CALS here and elsewhere, and been able to read their stories, I don't know what I would have done or how I would have coped. You say you read mine and Katies words and it could have been your husband. That was exactly what happened to me as I was despairing early after diagnosis when he began to say the most awful things. It saved my sanity, and it allowed me to stand steadfast and be totally determined to love him back no matter what. Some kind of self preservation for me as well as what I was determined to give to him as his last gift on earth.

Chris was in complete torment. I never wanted my husband to die, but I never for a moment wanted him to have suffered even one more day.

The ghost of FTD will fade for me I know it.

I would do anything for another CALS dealing with FTD on top of ALS. Still NO ONE in my regular life have a freaking clue about that side of Chris's disease. Without my online family members I would have been completely alone, utterly desolate.

Hugs PatGayle, tomorrow marks 3 months for me since Chris was set free.
 

MaxEidswick

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>tomorrow marks 3 months for me since Chris was set free.

and we are with you every moment off the way, Katrina!
 

affected

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Thanks guys, I feel at peace today and I know you are all supporting me :)
 

nebrhahe53

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you are the best...sorry I'll never meet you in person. i think my cals and you would really hit it off tillie.

Neil
 

patgayle

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Oh, when will I stop remembering the bad stuff and remember the good? Everyday I have to shake myself and say "remember the good times, even when he was sick, stop stressing on the things you wish you could forget." Honestly, the long term affects of ALS and FTD on caregivers is something I don't believe is being understood clearly enough. Affected I am in this with you. I wish that this will all fade away into a distant part of our being for all of us.
 

affected

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It will fade Pat, we have to keep believing that!

I know most of the time I'm fine, but the ghost of FTD seems to be lurking in the shadows ready to pounce. It's definitely a PTS that we go through. Saying that I believe we will go through it, meaning we will come out the other side, wherever that is.

Pat, no one else can understand it. If I were even to try and explain it to someone who hasn't experienced it they would have to be prepared to sit for so many hours to even begin to gain some tiny understanding of it that they would end up running of screaming.

But here, when it's someone like you and I, we can just say a sentence or 2 and the understanding is just there.

The FTD was far worse to deal with at the time and afterwards, that's a fact.
 

patgayle

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Thanks Tillie, you are a blessing.
 
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