Support for Alzheimer's

February 1, 1998 - I am going to go to the support group this Wednesday.  Perhaps they will help with some of the questions I have about care facilities.  I'm reading "An Alzheimer's Anthology" that I got at the fundraiser the other night - interesting.

March 21, 1998 - I just wish life was a lot simpler, but I don't know if I could handle it any better.  I've come to the conclusion that by being busy I remain sane and happy.  Some days I feel very anxious inside and some days I feel like I can handle anything.  I'm more at peace with most every aspect of it all now and hopefully, I am prepared for whatever is next.

May 27, 1998 - This morning I sat out some pudding for him.  He can't get the top off by himself and I wanted to help him.  He wouldn't let me.  He sat on the floor and cried and asked Heavenly Father for help and pretty soon he was able to open the pudding.  Tonight he told me that he loved me and that he knew that with his disease he needed help from people.

August 19, 1998 - He is in diapers 24 hours a day now.  I had him stay at the care center last night and picked him up tonight.  He bumped his head twice getting into the car.  One of the reasons I may decide to make his stay permanent is that I can't get him in and out of the car and I can hardly dress him by myself anymore.

August 24, 1998 - I put Craig in a care facility.  I feel good about it, but I can't quit crying.  I feel like the choices I made are right and that what I am doing now is the best for all of us.  This is a crazy disease.  In spite of it I feel incredibly blessed.  A richer and a better person because of this experience with Craig and "big Al."

September 5, 1998 - I volunteer at the facility on weekends.  It makes me happy to be there with Craig.  Last Saturday I curled the women's hair and shaved the men and gave them all hand massages and clipped or painted their nails.  This Saturday I took hair clippers and gave Craig and all of the gentlemen a haircut and shaved their necks.  I love being there with Craig and helping.

Getting the help you need is one sure way to find hope.  Allowing others to help lift our burdens is a blessing for the both the receiver AND the giver.  I so appreciate Judy's example of giving.  Not being afraid to step out of your comfort zone and serve others is a lesson Judy has taught me over and over again.   "The best way to find yourself (and to find hope I might add) is to lose yourself in the service of others."  - Mahatma Gandhi

Coping With Alzheimer's

More excerpts from Judy's book: 



January 4, 1998 - I've decided that as a New Year's resolution to help me I need to do one good deed a day - actually go out of my way to do something nice or good for someone.

January 9, 1998 - I talked to the Alzheimer's Association.  I've been soliciting donations for a dinner/fundraiser for Alzheimer's.  It's a $75 a plate dinner and I want to be able to meet the people I should know that affects what is going on in my life with Craig.  I want to be involved with the Alzheimer's Association.  We are caught between two worlds of young and old - real and unreal.

January 10, 1998 - I think this week I truly came to grips with the thought of caring for him like a child.  It is wearing both physically and emotionally.  I feel I exist day-to-day.  Talking is more charades, and one-on-one is hard.

January 11, 1998 - He's very snappy with me lately.  I think I am feeling at an all-time low.  I just want to be able to go to a movie or run away from everything for a few days.  I went to the store and bought a family in need some groceries, dropped them off on their porch and that was my good deed for the day.  It's not often I'm able to do this.  It makes me feel good to share or do some small gesture for someone.

January 22, 1998 - He spent the day with his mother.  I didn't shave him well today.  He was angry and wouldn't hold his head up.  He told me I'm not only not a good wife, but I'm not a good friend anymore either.

January 28 - 1998 - I made a promise to myself to go out once a month and be a friend again.  I haven't been a friend or anything else.  I have allowed myself to be a prisoner.  I need to step back and take control.  I've become a different person in the last month.  I hope that others can learn from my experiences and that I will be able to help others one day.

Judy always taught me that a great way to find hope during trying times is to get as much knowledge and understanding as you can about the problem so you know better how to fix it.  Education is empowering, and it definitely lays a foundation for hope to thrive.  Judy also taught me that thinking of others during your troubled times is yet another way to ease your burden.  Funny how giving hope to others (especially when you feel you've got nothing left to give) lifts your own burden and builds hope of your own.   I love how Judy not only wants to learn from life experience, but then turns around and help others to learn and perhaps not make the same mistakes she made.  Has the knowledge you've gained from challenges helped you to help others?  

Meet Judy

Meet Judy.  Judy has had many titles in her life, some of which include:  mother, administrative assistant, friend, caregiver, grandmother and widow.  I know Judy because she brought me into this world and we have been the best of friends ever since.  It is Judy that taught me how to hope and how to move forward when times are tough.  She knew how to teach me because life has given her many opportunities to learn.  Judy has survived breast cancer, a bout with e-coli, the loss of her son due to an accident, and the loss of her husband due to early-onset Alzheimer's, among other trials in her life.  Judy is my hero.  It is her experience with Alzheimer's that I'd like to share with you.

I know this story because it happened to me too - but I'd like to share it from Judy's perspective.  Throughout the time Judy cared for her husband with early-onset Alzheimer's, and worked full-time, she kept a caregivers diary.  When the journey was complete she published her diary and it became a book called "Life With Big Al."  Since my father's death in 1999, my mother has continued to work for Alzheimer's awareness by serving on the Alzheimer's Association board, public speaking, and facilitating support groups for family members of loved ones with Alzheimer's.

Over the next few days, I'd like to share some excerpts from Judy's book:

August 29, 1996 - Craig was diagnosed with Alzheimer's, or as he calls it, "Big Al."  Craig is 52, bright, energetic, independent, and very athletic.  He had signed a professional baseball contract at 17 years of age.  He owns his own business, works long hours, and runs at least 10 miles every day.  He is a marathon runner and an avid golfer.

May, 1997 - He is becoming more confused about days and he described that next day by "after we sleep again then it will be. . ."  One morning as we awoke he looked at me and said, "Now I forget, how are we related?"  I knew this would come but it still shocked me.  I turned around to gather my thoughts and asked him back, "How do you think we are related?"  He didn't know and I told him we were married.  I was afraid of more questions, so I got out of bed to fix breakfast and turned on the television for him.

November 22, 1997 - He went to the BYU/UTAH game today with friends.  He stayed the whole game and did great.  I'm so appreciative of his friends that are willing to take him places and help him.  I know it isn't easy because it is like babysitting.  With all my heart I want to do this well and walk hand in hand with Craig until we reach graduation day.  He deserves the very best.  I want to understand this disease all that I can.

December 4, 1997 - Craig is becoming more disoriented and able to do fewer things for himself.  I watch him eat and he hardly knows how to pick a sandwich up and eat it anymore.  I've tried flat flour tortillas filled and rolled.  I would put a napkin around it to hold the bottom but he would start to eat the paper before I could undo it.  It truly is a reality that there are new beginnings at the end of life.  As we face death we learn more about life and living and the important things of loving each other daily.  We can't relive our lives, but it's wonderful that we can learn from our experiences.  It is said that life must be understood backwards, but we forget the other proposition that it must be lived forwards.  What a world this would be if we did know in the beginning what we know in the end.  Our suffering can be turned into a celebration of the sweetness of human life.

December 19, 1997 - I'm at a loss as to know what else to do.  I feel like I just want to sit in a room somewhere and not listen, do or see.  Actually, what it amounts to is that I continue to wish each day away.

December 31, 1997 - He is afraid to go to bed alone so I always go with him, get him to sleep and then quietly get back up and write in the quiet hours of my lonesomeness.

More from Judy's book in the coming days, along with a Q & A with her at the end of the week.  I think it's important to note that in life, and especially in trials, we can expect ups and downs.  Some days feel very discouraging while others very promising.  We must try to remain as optimistic as possible until those promising days give us the glimmers of hope we all search for.  Once caught, that hope can carry us through hard times.   I like how Judy's friends were a source of comfort and support.  Leaning on others is a great way to find hope.  How have your friends helped you find hope during your own trials?