Kate,

Your comments really touched me and, as I told Shannon, I’m horribly embarrassed about being away from my blog for so long. What you’ve said needs to be part of the conversation surrounding AD and caregiving. Just as each person with AD has a different experience, so, too, do caregivers. Your experiences have been horrific—but, as you’ve said, you’ve been fortunate in friends. I’m sorry it took you so many painful years before you found the help you needed. I think your comments will help others.

I know I’ve had it easier than many others and I know I’m fortunate in that regard. Which doesn’t mean it’s been easy—it’s not. Ed continues to decline and I’m unbelievable sad (and angry) about losing my best friend. I’m heartbroken that I can’t share with him my life surrounding the release of “I Still Do”—it’s part of our partnership and our lives together, but he has severe visual agnosia and his brain doesn’t recognize the photographs or the book. He doesn’t understand how many people he’s helping as a result of “I Still Do”—he doesn’t know how many people feel they know him and how many care about him. All of this, and so much more, is heartbreaking to me.

Through this journey, I’ve tried to focus on those things that are still left—to me and to Ed. That’s easier to do in some situations than in others. I’ve also been fortunate that Ed has retained a sweet nature.

I hope you’ve been able to get back to your work and find the satisfaction from it that you used to. My love of photography and writing has helped keep me sane.

I wish you well and hope your story makes others feel less alone.

Judith

I feel awful, Shannon, for not responding sooner to your heart-rending post.

Between moving my husband to a facility in late June, the release of “I Still Do” in early October, and my advocacy on behalf of AD caregivers, my live has been lived on the run and I haven’t checked my blog in months. That won’t happen again.

It’s hard to deal with AD at any age—but 56 and 44 are entirely too young. I’m glad you have the support of friends and family and I hope you are comfortable asking them for specific help. I tried to do too much by myself for too long—and that just doesn’t make sense. I also hope you have a passion of your own that you will make time for; please don’t let your life be defined by AD.

I’d like to hear from you and know how you’re doing. You and your husband have my very best wishes.

I heard an almost elegaic tone in your voice about caregiving. I did not find it so. In the 7 years he was ill, i was frightened, lonely, confused, resentful, and often enraged at a world that would take my beloved in such anguish. The long bereavement process with AD was devastating, even with help from mental health professionals.

Will died at 56 in 2003 from a traumatic brain injury resulting from a seizure. In the last 6 years I have struggled with post-traumatic stress disorder that has made friendships, intimate relationships, and even work, once my solace, difficult. After 22 years at 1 university, I’ve had 3 jobs in the past 4 years. None of the mental health professionals I saw diagnosed ptsd. When I asked one of them 4 years ago about the possibility of caregivers and ptsd she asked if I was having nightmares or flashbacks. When I said, no,she said, “Then you don’t have ptsd.” Last year, my sister was reading a book by Johnathon Shay on Vietnam vets and said she saw me on every page! After that,
I finally found a professional who when I described the last deciade of my life to her, said, “Absolutely ptsd!” and I have continued to work with her for the past year.

Are there any other family caregivers out there who have similar experience with ptsd? I’d love to know. It’s something NO ONE talks about and I can’t be the only one.

I guess this is a grim snapshot of my experience with AD. But it’s honest, though incomplete.

I agree that there are compensations, if you are willing to open your heart to them. It forged incredibly strong bonds between me and friends who chose to stick by me to the end. And they did; and it saved my life, many times. One couple used their vacation to take Will to Florida to give me a week off. They all gave of themselves unreservedly for love of me and Will. 6 years after Will died, I am still close to those friends and they are a huge part of rebuilding my life. The same is true of my brother and sister.

Thanks for the opportunity to “talk”, and hope to get some insight on caregiving and ptsd.

Kate