A very nice combination when dealing with life.

I announced recently on the Alzheimer's message boards that when I was caring for my Jeanne for 13 years, I decided in the end it really didn't suck. It was one of the more rewarding and fulfilling experiences of my life. I wish that I didn't have to go through the ordeal. But it taught me something. That I genuinely loved my Jeanne, and I'd gladly do it again.


Well, I got a variety of responses. Both positive and negative.


"If I had the choice, I wouldn't go through this again," Sharon wrote. "I find it all very sad. My Bill is a shadow of the man he once was. He was always self-reliant and strong, a real do-it-yourselfer. He would be humiliated to know now that he wears diapers, frustrated at his helplessness. But, I am grateful that I still have the strength to care for him at home. I am grateful for the smiles and laughs and songs that can still he sing. I appreciate the little things more now. Alzheimer's Disease is character building for the caregiver, Jim. I'm glad you found something postive out of all of this. You sound like you enjoyed learning about yourself and your new ways of coping. I am not enjoying this situation, but I am learning, and that's always a good thing."

Then there was Kathy. "Yes, Jim, I agree," she wrote. "Although we would never choose this road, I am sure that we are becoming better (if not different--ha) people from it. At times, I feel myself getting and being very bitter. I think that is a normal cycle all caregivers have to go through again and again. In our hearts, we have to keep on and do what is the right thing. Giving up would be too easy and also too painful. I am a firm believer that everything in our life happens for a reason. We may never know these reasons. I don't know if God will let us in on the secret when he calls us home or not. I have a feeling not, as we will be so thrilled to be there, we will no longer care. It will just be so comforting to finally have made it there and to be with our loved ones yet again. Everyone happy and whole. Myself, personally, feel that God is putting my om with AD, and me to care for her together for a reason. Maybe to resolve all the hard feelings and bad blood between us all these years. I also, at times, when I know that I am making no difference to my mom at the nursing home, feel that God has lead me to the other less fortunate clients, who have no one. Maybe my smile, my squeeze on the shoulder is the only love they have felt all week. Or maybe I am being lead to the nursing home to form some kind of relationship with someone I haven't met yet, but will serve some purpose to me or that other person's life. We don't know. I know the last place I would have ever dreamed I would find fun and joyful, would be a nursing home. But I do enjoy trying to bond with my mom and visiting with the others there, clients and staff alike. It is part of my life now and I am trying to make the best of it. I am also trying to hard to keep my faith. It is hard sometimes. I do not understand why God would let anyone suffer through the horrible sickness of AD, but again, it is not for us to understand. I know he forgives me for my moments of weakness and I question him. Thank you for sharing your experiences with us. I am so happy that your wife had you to care for her and love her. Your words of encouragement to us that are just beginning this journey mean a lot. Thank you again."

Dawn wrote, "I think you have a beautiful heart and more people should look at things the way you do. I would gladly take care of my mom again. God rest her soul. I lost her in December 2003. And now I am taking care of my precious dad who has AD. I know it's going to be a long difficult road but I would give anything to do it again. And I would gladly take care of my dad over and over again. Thank you for having such a beautiful heart!!! I am only 39 and have lost my mom, my brother and am losing my Dad. Life really is precious."

Joyce, however, still has a tough time dealing with the situation. "After caring for my Bill for over 11 years," she declared, "I still think it SUCKS. I would never gladly do it again. I wouldn't want him or me to go through it again. Now give me the 35 years before this all started, and I would gladly do that again, even with all those ups and downs. I always had Bill to lean on. I can't imagine anyone wanting to see their loved one suffer through this again."

Joanie is having a tough time coping, too. "I know that I couldn't do it again," she wrote. " For me, it does SUCK. Bigtime. To see my mother, who was a strong, vibrant, controlling, wise and independent woman become this shadow of herself brings me no joy. I didn't need this disease to come into my life to know how much I love her. I knew that beforehand. Through our disagreements and differences I loved her and she loved me. Soon she won't know me or that she loves me. I find no joy in that. Yes, I cared for her fulltime for 2 years. And I hated when people told me what a good daughter I was, because I didn't feel that I was making a sacrifice that should be applauded. She was my mother. And if I had a husband who had this, I would do it because he was my husband. There are no heroics involved - that's what family does. But I find no joy or happiness in my mother's disease. I find nothing rewarding in watching my mother be unable to care for herself. I don't mind going through the ordeal. I hurt for my mother because there are moments when she is cognizant enough of her condition to know how much she has changed and views herself as a burden. That brings me pain. I don't find joy in her Alzheimer's. It makes me so very sad to see the other people there who used to have active and fulfilling lives reduced to sitting around, some wheelchair bound, but all of them locked inside their deteriorating minds. I cry everytime I leave - not just for my mother but for whoever touched my heart that day. I do find working with my autistic children rewarding because I might be able to help them forge a future. I find raising money for Alzheimer's research rewarding because somebody needs to find a cure or prevention for this damned disease. I find it rewarding to research why disorders like Alzheimer's, Autism and ADHD are on the rise because I think the answer lies in our lifestyles. I find it rewarding to watch my son as he grows into a little man. A great baseball player (future Dodger) and musician. I cry when his grandma bites his shoulder when he hugs her because she no longer knows any better. I'm generally a happy and carefree person. This disease took that from me for two years and my son lost that precious time of seeing his real mom. I've even been called a Pollyanna in my approach to life, which would leave me outside of the group that someone has placed me in. I always found that term interesting. And so belittling. I got out my old Pollyanna books (copyright 1908 - belonged to my grandma!) just to double check the origin of that term. I know that as much as my mother never understood the spontaneous, goofy me, she would have hated to see that person disappear. She loved me in spite of me and I loved her in spite of her uptight Pennsylvania Deutsch ways. I respond to this because it touched me deeply knowing that I probably wouldn't do it all again - at least not the same way. So I respond, taking the risk of becoming fodder for a blog, but I felt my opinion also needed to be heard."

Well, folks, I think Joanie did a good job of expressing herself very well, and honestly. Can't ask for much more than that. I like forceful and strong and honest opinions -- and Joanie has 'em. And she's polite and courteous, too. Seems to me that makes for a good parent, a good daughter and a good teacher. A very nice combination when dealing with life. --Jim Broede