Friends and Family,
It’s time to start this blog back up as we approach the 2013 Walk to End Alzheimer’s on Sept. 7. It’s also time for you to sign up your teams at http://act.alz.org/site/TR/Walk/KY-GreaterKentuckyandSouthernIndiana?fr_id=3390&pg=entry, so you can begin your fundraising.
Meanwhile, here is a post from our dear friend, Barbara Webb with an update on her husband, Al:
I am happy to report that Al’s health has not deteriorated significantly, but there are enough changes that make daily life quite frustrating for both him and me. Can you imagine going to the basement refrigerator only to get there and have to go back upstairs and ask what you were supposed to be getting? How would you react when there is a simple task you have completed many times in your life but now you can no longer figure out the sequence of directions nor even be able to understand the directions? Would it scare you when you can no longer totally follow a television show or even a conversation among friends? Welcome to Al’s world and the world of all Alzheimer’s patients. I can’t speak for what goes through his mind, but I do know what goes through mine – frustration with my inability to help him more, sadness at what we have lost, fear of the unknown and future. I try to remain calm and patient and remember above all else, he can’t help himself-it’s the disease. But it isn’t easy for me, either, just as it isn’t easy for any caregiver. To see my strong, educated husband say to me that he is stupid tears my heart out. He isn’t stupid; this disease is slowly shrinking his brain and not allowing him to think and remember as he used to. When he asks me the same question over and over again and I want to scream, I have to take that deep breath and tell him one more time the answer to his question. I try to remain calm and loving because if I have learned one thing it is that it doesn’t help to raise my voice and you can’t argue with an Alzheimer’s patient. It only exacerbates the situation and leads to more frustration. Notice I used the word “try” to remain calm, but I haven’t totally accomplished that feat. (Being a Type A doesn’t help, either.) And I know it is me that needs to do the changing because unfortunately, Al is not able to do that anymore.
I have read over and over again how caregivers need to care for themselves, but find it so difficult to do. It seems there are very few moments for myself and when there are sometimes I am too tired to do anything but collapse in my easy chair. But our therapist has helped me realize this needs to be a priority in my life, so I am trying to follow through on this. I love massages so I have made a commitment to get a massage once a month. (I signed a yearly contract so I would have to follow through!) I am also making a more concerted effort to say no when outside obligations are asked of me. (I haven’t fully accomplished that one.) And I am being more forthcoming in asking help from family and friends. I still try to make time for a mini “Shabbat” (a joyful time of rest) but that doesn’t happen as regularly as I would like.
One thing I hope all caregivers take advantage of are the many workshops, programs, articles, books that are available to us. If you are ever able to see Teepa Snow speak, don’t walk but run to her. She is a very knowledgeable professional who speaks with much humor and love. (That is where I learned that the brain actually shrinks during the progression of Alzheimer’s, not just plaque buildup.) I highly recommend the Best Friends Approach to dealing with Alzheimer’s. This approach helps to enhance the lives of those living with Alzheimer’s and their caregivers’ lives as well. The hope is that we will be able to turn from frustration and despair to joy and hope. ”A Dignified LIfe-The Best Friends Approach to Alzheimer’s Care” by Virginia Bell and David Troxel, is a wonderful book that has helped me immensely in trying to continue to allow Al to lead a life of dignity and hope while keeping our relationship in tact as much as possible. Alzheimer’s Association has many enlightening programs for whatever stage your loved one is in. You can get on their mailing list or email list and learn about all of the programs that are available in your area. (www.alz.org)
Although we face the fact that we may need to place Al in a facility someday if I can no longer care for him, we are both committed to keeping him at home as long as possible. As I have said many times, Al is the best thing that has ever happened to me and I wouldn’t change my life with him for anything in the world. I daily live by the scripture verse Philippians 4:13 – I can do all things through Christ who strengthens me. And a little humor never hurts – It is so difficult to remember when you are up to your ears in alligators that your initial task was to drain the swamp. Oh my goodness, welcome to the world of Alzheimer’s and caregiving!!!