Yesterday's news about Sid being dropped from the BAP III trial must have hit me harder than I expected. I invite you to go to the home page - www.thealzheimerspouse.com- and read today's blog about my reaction and emotions, and post comments here.
Joan, my heart goes out to you...we think we are prepared and then something like this comes along and blows our little house of cards right over. I am sending you strength and friendship. And please know that you have helped ease the burden for so many of us by giving us this safe place to land.
Joan, I am so sorry that Sid won't be able to be in that program. I echo Shoegirl's comments - she has such a wonderful way with words!
My way of coping with my husband's AD is that of acceptance of what is to come. I do not hope for a cure for my husband because I know it is too late. Hopefully the studies being done now WILL help those of the next generation and I hope that they will find the cause and the cure so that our children and grandchildren don't have to suffer this insidious disease. To be on the emotional roller coaster of hope and despair is one I personally have chosen not to ride. I can cope with being a caregiver to the end of his life, I hope. Dealing with its stress and our loss is hard enough for me.
Joan, I understand how you are are feeling. I have had some of the same feelings. My DH is in the same study and is to have a second infusion in two weeks. I have seen no improvement, in fact, I have seen a decline,recently. I track the decline to his having had some dental work and the waiting for his permanent bridge. Any change in routine and he is totally confused. Lately, he needs me in the same room all the time. It is kind of scary for me and must be much, much worse for him. I have been checking out continuing care retirement facilities for both of us. With the constant losses in the stock market, we will be unable to buy into one, I fear. I worry about so many things and I know I am not alone. Thank you all for this site Maryd
Joan, I have had the same feelings and I think it is "losing hope". During the early years I kept my spirits up somewhat by telling myself maybe the diagnosis was wrong. Maybe it was really something for which there was a cure. After that bubble breaks and we lose hope things get scary. When you find another trial to go in, your "hope" will resurface.
Joan, read you blogs, only natural to be let down. I'm with the others, it's losing hope (for now) and I know how you were counting on this for Sid to have this to look forward to. So sorry to hear your news. And yes, you can scream now!
Joan, i agree the letdown is the hardest to overcome. changes for the good are no longer on the table so to speak without new interventions. i hope you are ok with all this and can come to terms. divvi
Joan, maybe this is 'pollyanna', but something similar happened to us. Hank was accepted into a trial for something they thought would remove the plaque from the brain - right now I can't think what that trial was called. It was a very complicated schedule of 50 appoinments over years and we worked everything out in our schedule to do this, even though we knew there was 50-50 chance of drug or placebo. At the first appointment they found a reduced white blood count, and he would have had to have a bone marrow biopsy to get a diagnosis. At that point, we talked the whole thing over, decided not to participate in the trial, sold our home and started living fulltime in our motorhome. The point is - I was so disappointed because I thought this might mean the AD progress might be reversed! As much as I felt chagrined with the end of "Plan A" we went on to something we thoroughly enjoyed as "Plan B". My hope for you is that you will mourn what didn't happen and then face facts and find some wonderful way to live whatever life you have.
Oh Joan, I'm so sorry. But You know, Frand is right, Design a Plan B, while you can, and while he is still well enough. Enjoy him for whatever he can do for now. The fear is with all of us who are at that stage where all we can think of is what's going to happen next... Will it be incontinence, inability to talk, not recognizing us, We know those things might some day happen, and we all share your fear. Thank you so much for giving us all this site to share those fears, and sometimes little triumphs (very small) that this caretaker life holds for us.
Joan, I am so sorry that the trial isn't working out for Sid. Plan B will come along. It is okay to give yourself time to grieve that this one isn't working out. It really is part of that emotional roller coaster we are all on.