All of these stories are so wonderful and heartfelt. I'm glad that our stories have moved readers to share their own.
I spoke with Linda on the phone yesterday — it's mid-April — and she's doing pretty well, all things considered. Tommy's had a few setbacks, and there are days when her in-home providers have not been as reliable as she wishes. But things are going well for the most part. She's had so many calls and people still stop her in the grocery store to thank her for sharing her story.
Thank YOU for sharing yours.
Best, Beth

"Age of Uncertainty" is at an intimate and honest portrait. Thanks to Linda for sharing her experiences, and to Beth for the forthright treatment. Heloise (of "Helpful Hints") called homemakers the precious backbone of the world--a metaphor that applies with particular acuity to caregivers such as Linda.

--Carol. Ralph's friend.

Your article really hit home for me. If you have never been closely involved with someone with brain disease, your great perception of it and description of it following this couple is amazing.

Most people really do not have any idea what it is really like. You portrayed it so well. It has been a few years since I cried, but I cried as I read it-- remembering back just a little over 2 years ago. I was the caretaker for my father for 3 years while he was in the middle to late stages of Alzheimer's disease-which was his diagnosis.

I was working full time, taking graduate classes (6 hours each semester), and caring for him. No one really knows what it feels like until they are affected by dementia. The stress, the sadness, the constant guilt of thinking you are not doing the best for them and that they deserve better.

Trying to keep them in a place that has workers that just don't get it, and so makes it harder for them and you, but knowing they cannot go anywhere else because of their wandering behaviors.Seeing him struggle to find a word or noticing a little glimmer in his eyes that he knows you--or knows that you are a familiar face that treats him well. Having no one to help you. Spending his life savings for his care.

Being so exhausted you look in the mirror and see new wrinkles and bags almost daily from lack of sleep. Begging family members to just go see him for a few minutes and relieve you. Taking them out in public, and watching people avoid you, or stare and stare. The guilt and worry that he is not being treated the way you would treat him. Watching this father you love so dearly go downhill--a piece here, a piece there taken away almost daily.

Holding his hand and feeling him relax and knowing that he can feel your love-- or at least feel comfort that you are there. His childlike trust in you. The strangeness you feel when he thinks you are his wife instead of his daughter. Wishing you had asked more questions about his family before he stopped being able to remember or talk. Dreading changing his diapers and knowing he must be feeling the strangeness of it all.

Being so shocked that he can't talk, but he can sing hymns with you like a songbird. Being so grateful you can hardly speak when his caretakers really DO CARE, and treat him with dignity. Watching him slip so quickly....just a few months can mean losing the ability to speak, to eat, to put on a shirt. Trying to find the right combination of medication where he can be happy but not sleepy and dopey.

Being angry that this is the year the facility he is in did not get any flu vaccine, and then having to make the decision to NOT treat pneumonia after he gets the flu, and then after he dies in the spring from complications of pneumonia, being grateful that he died before every last bit of his mind was gone and that he had still been able to walk and feed himself with his fingers before he got sick.

Having had to leave messes and clutter everywhere in your own life and racing back and forth every day to check on and be with him. It is something that stays with you, even after they are gone.

Hoping your own children NEVER have to face this, and being scared that they will due to the genetic link. Trying to eat better, exercise better, and praying harder so that they won't have to go through it with you.

It is a very lonely journey. Thank you for your compelling story.

C.W.