Hello Xenia,
i am am touched by your note to the forum. You sound like a great lady, with lots of energy and obviously devoted to your husband of many years.
it is hard to watch your spouse go through good days,bad days, and it sounds like you are doing the very best you can to comfort, care and support him.
welcome to a group of people like yourself, caregivers who give day in and day out. It's when the days get long, the nights are longer, that the forum serves it's purpose - to connect like minded people - ordinary people, all doing the same thing. All we need is someone to hear us when we are tired, when we need an answer, or someone to just listen.
i have lost loved ones as well, and like others on the forum - I welcome you to a place that you can lean on others, vent and get advice or encouragement.
sometimes it's all we need - a listening ear.:) it's free of charge!
it's really hard for you to see your husband rally, have good days and then wonder if it was a mistaken diagnosis. I think all you can really do is take one day at a time, the good ones, the iffy ones, the bad ones.
You you mentioned having supportive family members. That is your gift. Please make sure you do take advantage of those in your family who can give you regular break times, personal time...a few hours, or a day or two, on a regular basIs. It's important to take care of you - as well as your husband.
i have worked in long term care, as well as a family member for the past four years - who is now in a respite care situation, I didn't realize how much energy I gave, til after the fact. We do it for love, we do it thinking we can keep going...we can't. So take care of yourself, your husband needs you too;)
sending you my thoughts tonight,
write when you can,
best wishes,
NatR