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4 am thoughts
Posted: Monday, February 9, 2015 3:57 AM
Joined: 2/2/2014
Posts: 6262

I can't sleep.

We are now 5 years since DW started showing symptoms

I know most of you have it much worse than I do. DW can still do all her ADLs, including contact lenses. She likes jokes and travel and sex. She is still a fun person. I was doing income taxes yesterday and she kept asking if she could help. She is grateful for my cooking and everything I do .

We are invited to Berlin in March for the 80th birthday conference of one of our oldest friends. At 80 he can still do first class academic work. DW has not written a line in 5 years, since she was 57. I feel the loss of those years of intellect and drive and creativity. It's all gone. I have asked for a badge for her as a distinguished guest. 5 years ago she would have been the keynote speaker.

I married the most brilliant girl I ever met. She could do anything and everything. Played the flute, had her own darkroom, skiing, scuba diving. She was a physician and computer expert and wonderful mother. We are married 40 years in May.

During the day I feel the glass is half full. I night it is half empty and draining away.
I can't stand the thought of losing her. Especially this way.

Free thinker
Posted: Monday, February 9, 2015 5:01 AM
Joined: 4/1/2013
Posts: 13

Man, do I relate to your situation! My wife was a gifted artist, taught at the university where I continue in position, and was a full partner and co-pilot in everything we did together over the past forty plus decades. It's brutal to see so much of that slowly deleted, and to feel helpless to do anything to stop it. It's helped me to connect with other caregivers nearby, mostly men in fact, who are the primary care providers for their wives with AD or related dementias. There are many of us out here, and I'm sure there may be men and women in your wider circle of friends and acquaintances who are in the same or a similar boat as yourself. Each situation is unique, but there are a lot of commonalities, and I think it helps to explore this over a cup of coffee or lunch with folks who feel, like you, at sea and alone. I've done just this. It's not any kind of solution to anything, but it's a balm.

I've read something like a small library of books on AD and dementia over the last five years, and a handful have been inspiring and helpful. Rachel Hadas' "Strange Relation: A Memoir of Marriage, Dementia and Poetry"; Anne Davis Basting's "Forget Memory: Creating Better Lives for People with Dementia"; Margaret Gibson's "The Broken Cup"; "Levels of Life" by Julian Barnes - not about dementia, but about love, loss and grief; "Being Mortal" by Atul Gawande - again, not specifically about dementia but rather, mortality; and Laura Wayman's "A Loving Approach to Dementia Care." These are just a handful, but titles that helped me in different ways.

Finding some kind of acceptance is the difficult job of the caregiver (and the patient too, for that matter). Lots of other people have said it: be in the moment, don't dwell on what was and what could have been. I have to say, I've learned a world of things from this experience, and I credit my spouse with teaching me much of it (sometimes directly, often indirectly). I will help her hold on to as much of her self as possible, with as much dignity as possible, for as long as possible. Your job is to do that for your spouse too, and it's a tall order, so feeling overwhelmed is not surprising. I hope you can find some fellow travelers to commiserate with. It will help you.

Posted: Monday, February 9, 2015 7:44 AM
Joined: 7/31/2014
Posts: 1369

Its a cruel disease for sure. I hate what it does to people, families and marriages.

Crushed, you have always sounded like the most loving and caring husband a woman could ask for.

I don't think there is ever an easy way to lose our LO's.

I also do OK during the day, but oh those nights, they can be overwhelming. 1:00-2:00 am can be awful, everything looks bleak at that hour for me.

You've always said we must do whatever it takes to get thru this. We must count our blessings, even though that list is shrinking.

Take care and enjoy whatever you can , this too shall pass.

Posted: Monday, February 9, 2015 8:31 AM
Joined: 11/1/2014
Posts: 127

So sorry Crushed.I also find nights are the hardest.
Posted: Monday, February 9, 2015 9:38 AM
Joined: 12/17/2014
Posts: 1161

That old adage is true: It's always darkest before the dawn, or something like that.

Thank you for sharing your wee-hours thoughts. We are there with you.

Free thinker, I appreciate the book titles and will look those up.

Hope everyone gets some good rest.

Mrs. Braxton
Posted: Monday, February 9, 2015 11:30 AM
Joined: 9/12/2012
Posts: 929

Will you be able to take her to Berlin and attend this wonderful Birthday Bash ?
I can't image being so brilliant and doing such important things around the world. It is tragic to have it taken at such a young age.
and also for you to have had such a full life, as you have had , and now to be home bound for the most part.
My heart goes out to you and your wife. I do hope its possible to take at least one more trip with her.

Posted: Monday, February 9, 2015 12:27 PM
Joined: 1/19/2015
Posts: 599

I am one more in your "club" Crushed. It's like watching a slow-motion train wreck with the love of your life on board. There is nothing we can do to "fix" the situation so we feel helpless. I find that love remains strong but it shifts from the love of a husband and wife to a something like parent and child. The bright, artistic lovely lady I knew is obscured by this terrible disease and I miss her in her presence. Nights can be tough and sleep can elude us when the mind won't shut down. I find Scripture memorization and recitation helps.

I feel a great sense of responsibility when I realize that God, who knows the future, has trusted me to care for this wonderful woman who gave me her life almost 50 years ago as I gave her mine. I am trying to keep her happy as long as I can and, as you probably know so well, in so doing we must sometimes pretend the absurd is normal and normal is continually uncharted territory.

I would like to suggest you start a journal. Whether a major project at work or a major crisis in life, I have found keeping notes, a record, a log, Journaling, whatever you want to call it, helps. I usually start out recording facts but find thoughts and even emotions find their way into my "notes." Journaling helps you objectify and process the mixture of thoughts and emotions that can keep you awake. In order to write things down you have to bring your thoughts to coherence and, in so doing, you will discover hidden insights. Once you have written things down you will feel less helpless because you have done "something."



Posted: Monday, February 9, 2015 12:46 PM
Joined: 3/7/2012
Posts: 1751

The Life-eater
Crawls from its throne.
It consumes
Without distinction.
It devours
From the simplest to the highest.
Dementia/AD has no boundaries.
Sweating. Scared.
Afraid to go to sleep. And dream.
My heart is pounding with intense fear.
My brain is screaming in agony,
Death. (Just around the bend.)
"No!" I shouted. "I don't want it to go this way!" I cried rebelling.
"It is what it is" Life and Death, in unison, replied.
My moment of anguish dissipates a little.
Adjusting. Adapting. Accepting.
A journey on earth... Life and Death... following each other.
"Life goes on. Life is for the living." It has been said to me.

Wandering. Wondering. And, often in awe.
I continue on my earthly journey.
Until the end.

Posted: Monday, February 9, 2015 12:48 PM
Joined: 2/2/2014
Posts: 6262

Oddly enough DW travels incredibly well. People simplify their lives in many ways. For me a suitcase and a hotel room or apartment can be what makes life simple.
We have a zillion frequent flyer miles so I do upgrades whenever I can. Germany is actually easy. I speak German, she doesn't so she does not attract any attention by being quiet. I gave my first lecture in the former East Berlin in 1982. She will have friends at the conference who have known her for years.

I live in the house I grew up in but I have a real wanderlust. We will just keep going as long as we can