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I am having a sad...
Posted: Monday, February 24, 2020 7:55 PM
Joined: 3/10/2019
Posts: 143

 It just ambushed me today.  Crying all afternoon, can't concentrate, can't work, feeling useless and sad.  

DH is late stage Lewy Body, in MC and on hospice since October.  I have been coping pretty well but once in a while, KAPOW-- dementia punches me in the gut and throws me to the ground and makes me cry.  Today is that day.

He is sleeping more and more.  Today I climbed in to his little twin hospital bed and lay next to him. (Some times the bed smells like pee, but thankfully not today.)  He half opened his eyes and said "Hi sweetie," and gave me a little smile.  Then he went immediately back to sleep.  His voice is a tiny hoarse whisper, but he still knows me and it was so comforting to be next to him again.  It felt like we were at home.  A few minutes later he half opened his eyes again and said, "Am I dying?"

"No, no you're not," I told him while giving him a hug. But he was already asleep and didn't hear me.  I lay there next to him for a while longer, thinking.  He. is. dying.  I can't stop it.  I can't help him.  I can't stand for it to go on much longer, and I can't bear for it to end either.  There are no good futures here, just different kinds of misery.  I want my old life back.


Posted: Monday, February 24, 2020 8:20 PM
Joined: 6/12/2016
Posts: 1375

I wish you could have your old life back too. If I could, I'd give it to you. 

Im truly sorry for you and him.

Posted: Monday, February 24, 2020 8:21 PM
Joined: 2/2/2014
Posts: 6144

My story is the same except that I do not get intelligible answers to any questions.

She still walks around and i feed her ice cream and cake (I made the cake )

 She has no idea of self or her name or me or that she is dying

 I came home and cried and pretended to work and did nothing.

I touched her jewelry, her knick-knacks, her nightgowns.  I remembered the

 sweet phrases that told me she felt romantic.

I pull out a poem I wrote just after she was diagnosed With Alzheimers

Cape Ann Dawn II  June  2012

I think of warm

I think of cold

I think of young

I think of old

The glass door stands ‘tween me and sea

I see what was, and what can be

And through it all the sea rolls on

The dirty sky awaits the sun

The lighthouse quits with break of day

And I so soon must find a way

But here, through glass, with glass in hand

I sitting, surely take a stand.

I think of light and love and life

A lovely, warm and sleeping wife.

I think of children grown so tall

Their triumphs, pleasures, joys and all.

I know, what sea and sky do not,

That precious moments must be caught

And strung like beads on chains we wear

And shout defiance to the air



Posted: Monday, February 24, 2020 8:51 PM
Joined: 12/18/2011
Posts: 12632

I'm so sorry about your sadness.  But, how safe and warm you must have felt lying next to your husband and for him to awaken and recognize you.  I know how hard it is for you and for all of us who have gone through this part of the disease. Take advantage of every moment you have with him- they'll be sweet memories.

Posted: Monday, February 24, 2020 10:31 PM
Joined: 3/15/2018
Posts: 614

CatB, I can feel your heartbreak. We will all be there at some point. But there is still hope for us in the future. We will get through this. We will survive and learn how to live again. Sometimes that’s the only thing that I can hold onto.
Posted: Monday, February 24, 2020 11:41 PM
Joined: 11/29/2019
Posts: 118

CatBallou.....I'm so sorry that you had such a sad and tearful day. Your DH's smile and greeting was so bittersweet. I'm glad you were able to snuggle with him and maybe for a few moments be reminded of better days before this horrible disease invaded your lives. Sending you a big hug.
Posted: Tuesday, February 25, 2020 2:03 AM
Joined: 5/7/2018
Posts: 437

I'm so sorry. This is such a sad and hopeless disease---one of the worst. What other diseases rob a person of his or her very essence? I wish I had my husband and my old life back, but that isn't to be. You will get through this---and your husband will no longer be suffering. You will just find a new path to travel.
Posted: Tuesday, February 25, 2020 4:27 AM
Joined: 4/2/2018
Posts: 3817

This disease really is a roller coaster. I'm sorry you had such a bad day yesterday. Hopefully today will be much better.
Katy sue
Posted: Tuesday, February 25, 2020 5:27 AM
Joined: 9/24/2016
Posts: 464

Cat, ditto everyone else’s comments. I was exactly where you are only a few weeks ago. Most difficult but bittersweet place to be. Priceless that your husband knew who you were. That’s a gift just for you. He will leave soon, but wants you to know he will be ok on the other side, and you will need to let him know you will also be ok. Letting go takes a kind of love that is difficult to find words for.
Posted: Tuesday, February 25, 2020 8:48 AM
Joined: 3/7/2012
Posts: 2633

Oh goodness, that takes your breath away. What a sweet gift he gave you - the simple phrase "hi sweetie." Treasure the moment.


Posted: Tuesday, February 25, 2020 5:37 PM
Joined: 2/4/2017
Posts: 526

I have those days I'm having a breakdown, it hurts so badly.

DH no longer  makes sense...nor do I think he knows me.  I'd give anything for a hug. So sad after 50 years.

Posted: Tuesday, February 25, 2020 8:14 PM
Joined: 3/10/2019
Posts: 143

Thank you all for the kind words, and especially for the lovely poem.  Feeling a little better today and able to do some work.  Also went to the gym and worked through some grief.  Sat in the sauna and sweated out some agony.  I think I will live to grieve another day...

I helped feed DH his lunch today.  He wasn't really able to talk and has trouble moving his hands.  But he did recognize me again, which was nice.  Lewy body is so diabolical.  He has gone through periods when I was sure the end was near, then bounced back again and had some very lucid days.  Then another steeper decline, and another partial return.  He has developed profound apnea breathing when he sleeps, which is scary even though the hospice nurse tells me it is a normal end of life thing.  I'm exhausted and bewildered by all of it.  

But thank you--it's comforting to know there are people who understand what I'm going through.  Could not do this alone.

Posted: Monday, March 2, 2020 2:29 PM
Joined: 1/16/2013
Posts: 11

I felt like you were telling my story.  My DH has been in Hospice for over two years and in MC over 18 months.  I too get In his hospital bed with him, hold him and tell him I love him.  He will open his eyes a bit, say " I love you so much" and back to sleep.  We have no family close, most of our friends are gone.  I keep very busy during the days BUT the evenings and weekends SUCK.  We live in a retirement community and I am known as the MARRIED WIDOW.   I don't belong in any group.  I've tried with the married folks, I'm a fifth wheel.  With the widowed folks I don't belong because I am married and proud of it.  Like you I want my old life back, but I know that will never happen.