Old 07-14-2016, 02:18 PM #16 (permalink)
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Default Re: Warning...can't find a title but just rambling

Thank you Mike. Coming from someone as strong and supportive as you, it means a lot to me. Made me cry but don't worry they are good tears. Lol. What I have learned along the way is that we all have battles and just when you think you have it hard you read a heartbreaking story.

I had 16 years of a very good life. To some that's so short but to me it was more than expected. I have always had to show incredible strength so no one knew how I was hurting inside. Finding this forum has given me the permission to freak out and show weakness. INCREDIBLE CALS like you Mike, have given me a voice and you are teaching me to heal day by day.

Hopefully, I will continue to grow and give to others like the great CALS here. This disease is nasty and hard to deal with so having wonderful support is crucial.
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Old 07-14-2016, 02:54 PM #17 (permalink)
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Default Re: Warning...can't find a title but just rambling

Deb I think there is a very big difference between reading the clinical description "lack of empathy" and living with it. That is one of the cruellest symptoms we as CALS experience. It's one of the hardest to talk about because PALS who do not have FTD and people around you will try to justify what he is going through and why he is like this. But they do not know the intimate way you know your husband, nor the depth to which the inability to empathise hits. It is such a huge part of what we go through and I want to acknowledge that.

I know that I simply did not discuss that side of things with anyone except a very private CALS only group. The reason was that if I did, his behaviour would so often be justified or minimised because he was dying you know (as if I had somehow missed that point??). When anyone would start justifying his behaviour I would feel like the floor was going to open up and I was going to fall into a bottomless black void and be lost forever.

These discussions are an incredibly important talking point for all CALS!
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Old 07-14-2016, 04:17 PM #18 (permalink)
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Default Re: Warning...can't find a title but just rambling

I want to thank everyone who posted on this thread. Because of all of you I can jump off my pity train (at least for the day ).

What I learned is that there are a lot of PALS that were very loving and supportive before the monster came into their life. So... how can this many PALS be like we have described here? They can't walk a mile in our shoes so we must help them along. They have lost so much and feel guilty, fear, loss and loss of independence. These are the loved ones that were partners in the relationship. I know Steve hides his pain and fear and now I understand why thanks to the posts here. It doesn't make it easier but it does make me think about how I would feel or act if the shoe was on the other foot. Yes, we are both suffering but our endings are very different.

I am good with posting my feelings here if it helps even one other CALS to not feel alone with their thoughts. We are not alone.

Kim and any other PAL who read this, please don't feel guilty. You would be there for us. You are not a burden, we are not angry, and we don't regret a minute of being there for you. What we do need so much is your love and for you to remember what we used to be. You can try to hide your pain but we would much rather share it with you. I do understand that opening up is so hard but maybe a hug here and there and letting us know you are still here. Remember that we are also losing and most importantly losing the one we love. We have been a team through the years and playing alone is never the answer.

I am going home from work tonight and hugging my husband whether he likes it or not. He has to deal with changes but I can do my best to let him know my love won't change even when he pushes me away

I love you all and am so grateful to have you. Now for the big girl panties. Maybe some polka dots added for flair.
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Old 07-14-2016, 08:39 PM #19 (permalink)
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Default Re: Warning...can't find a title but just rambling

Lack of empathy is something we've talked about before. The sheer physical (and we know ALS affects metabolism) and mental energy that it takes to be a PALS is part of it. Cognitive and behavioral changes that vary from person to person are another. Withdrawal ostensibly for the family's sake is a third, and may show up as being nice/energetic with other people but not the family as much.

What several of you are experiencing is therefore very common, but that doesn't make it any easier. Try to remember, the relationship you have had is and will always be there for you in some form: your children, your friends, memories, photos, keepsakes, creations, buildings, etc.

The post-ALS chapters are a new book and there will be a time to close it, though it too will bear some positive fruit. The pre-ALS book you never close, and that is the one you carry with you. I am not saying that the ALS years don't count for anything, but there is nothing wrong in acknowledging that they may not count for as much.

Best,
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