RSS Feed Print
I don't know what is worse....
Posted: Wednesday, July 24, 2019 7:17 PM
Joined: 2/2/2014
Posts: 5534

I fed her dinner and dessert , she ate very well.  She answered "sure" to a few questions. otherwise it is babeling and blank stares.  She used to be my lovely, talented, brilliant,accomplished, public spirited wife.   She was wonderful mother, a loving companion and a companionable lover.  I  asked her to marry me in 1972.  She was 20. I never in my life did anything so intelligent again.  We have been married 44 years and they were wonderful.   

I  scream at the universe, which of course does not care.   There is no comfort and no solace in thinking of the wonderful years.  The loss is just too raw and painful. do I try to remember or try to forget?   I wonder if it ever stops hurting so much.  



Posted: Wednesday, July 24, 2019 7:48 PM
Joined: 8/22/2017
Posts: 395

Sorry for your ongoing ambiguous loss, Crushed.  The wheel of fortune turned on you big time.
Rescue mom
Posted: Wednesday, July 24, 2019 7:54 PM
Joined: 10/12/2018
Posts: 1474

It is so painful. I wish I had an answer for you.
Posted: Thursday, July 25, 2019 1:18 AM
Joined: 5/7/2018
Posts: 423

This sounds so much like my own story. I fell in love with my husband in a creative writing class in college. He was so brilliant he made the published poet professor look bad. We started dating in 1971 and lived together from that point on and married in 1978. We have two wonderful daughters. Both English teachers, we had discussions about books, movies, politics and life. We backpacked through Europe in our late 20's and traveled various places throughout our lives. Now he can no longer read. He often thinks I am a stranger and chases me out of the house we built together 30 years ago. I am often afraid of the man who I love more than anyone. I have lost my best friend, my lover, and my companion. He barely can get sensible words out. "Friends" have dropped us. I cannot leave him for more than an hour or two. I know things are getting worse day by day. He was diagnosed in 2016 at age 65. I can so relate to your screaming at the universe. Life is so cruel.
Posted: Thursday, July 25, 2019 6:22 AM
Joined: 2/2/2014
Posts: 5534

Victoria2020 wrote:
Sounds like you had, for today’s reality, a nice meal.

We only get one today.

As they say, that is why they call it the PRESENT.


Posted: Thursday, July 25, 2019 6:28 AM
Joined: 2/4/2017
Posts: 512

I can so relate.....we were just an average couple who fell in love  and have been married over 50 years.  We were enjoying retirement....a little travel, eating out with friends.   He was my best friend...It's beyond sad to see him now in stage 6.  Very few (so called) friends have hung in...I'm managing...but that's about it.  I miss my life.  I hate my new norm.

Posted: Thursday, July 25, 2019 8:27 AM
Joined: 2/22/2017
Posts: 78

Crushed wrote:
  I wonder if it ever stops hurting so much.  



 Oh Crushed! I'm so sorry. I, too, wonder this very same thing almost every day! This slow dance of Dementia, waiting for Goodnight Ladies that will be years of overwhelming grief in the making, and knowing all I can do is keep dancing this painful dance.  

Posted: Thursday, July 25, 2019 8:57 AM
Joined: 3/28/2018
Posts: 307

Yes today is the present and it is in the present that you are really hurting. I think it takes another spousal caregiver like most of us are on this post, not just a caregiver who is a friend or child, to be able to empathize with you. Your pain and loss of what your wife was once to you are palpable; you have lost so much and I hope eventually one day, the hurt will lessen.
Keep It 100
Posted: Thursday, July 25, 2019 8:57 AM
Joined: 2/26/2017
Posts: 564

As long as we have the ability to fully remember the person they truly were, and therefore know/recognize/witness the enormous and cruel loss, I doubt it ever stops hurting. But I think in time we will learn to manage that pain, or at least we better, for our sanity's sake.
Michael Ellenbogen
Posted: Thursday, July 25, 2019 9:21 AM
Joined: 11/30/2011
Posts: 3048

I think you need to look at it from a different way as I do. If I had to do it all over again I would not change anything beuce I have wonderful daughter and wife. We have been very fortunate in life and we have travel the world and I know when I am gone I have provide for them and they will be taken care off. If something would have changed along the way then the out come may have been different. I think you are much older then I  and I would be happy to just be around 5 more years. We should be happy for the good times we have had and not focuses on what our lives have become. That is how I get buy everyday.  Believe me I know how it suck to go from a very intelligent person to needing so much support from others and needing to rely on people who you know less than you but have no choice. I am great full everyday and just hope I can pass quickly when I get to the worst stage. I do not want my family to see me in that stage if I can help it. 

Posted: Thursday, July 25, 2019 10:28 AM
Joined: 2/1/2018
Posts: 463


I am sorry for your pain.  We are all there at some level, whether our LO’s have passed, are safely cared for out of the home, or are at home day to day.  

I have to ask you: are you taking your own advice that you willingly share with us?  Are you engaging in something that brings you joy, or at least seeking out such things?  Carpe Diem, sir, it’s the only way to roll.  Today is a spectacular day in your neighboring state of PA.  For starters, just enjoy the day.  Cheers.  

Posted: Thursday, July 25, 2019 11:10 AM
Joined: 11/18/2018
Posts: 173

Ah, we are so close in this.  I brought my DW home last evening and cooked her dinner.  We sat on the back porch and looked at the back yard which is gorgeous this year, probably because of all of the rain, and she petted the dog.  It was a good day for her, but on the way back to the MC facility she was no longer "there." 

 You asked a question -- "do I try to remember or try to forget?"  While I am newer at this than you, I'm trying to work out the same question.  My answer for now is to do neither.  Instead I try to focus on things in the future which I will be doing -- a trip in September, going to dinner with friends, playing something special and challenging on the organ at church.  I don't try to forget what we have lost, but I keep it at a distance, almost like seeing it through a gentle fog.  Every once in a while it pierces the fog and that hurts, but I carefully put it back -- not forgotten, still valued.  When I see her I deal with the moment -- good day, good minute, bad day, bad minute and then try to move on with my life.  There is so much advice here on trying to take care of yourself -- this is my way of doing it, at least for now.  It's not being selfish; it's self-preservation.  It's not always easy, and I have to say I dread Christmas -- it will be harder then.  

Posted: Thursday, July 25, 2019 11:25 AM
Joined: 2/2/2014
Posts: 5534

Yesterday the 6 year old grandson fell and needed stitches.   So we all went to dinner at his favorite place.  I wore my "Mr Incredible "shirt. He loved it.  I go to PA tomorrow to see my sister who is ailing.  Sept 5 I'm doing a public lecture.  I'm doing pro bono work on  a fire in elderly housing.  I played trains with the three older grandchildren last Saturday.  I am not depressed or inactive.  My relative in the state legislature has asked me about funding dementia care.   I will go to Germany twice this fall.   But behind me is a stack of DWs jewelry boxes.  (they are fishing tackle boxes).  It's not expensive stuff, but every piece  has a story. 

My theme is memory, that winged host that soared about me one grey morning of war-time. These memories, which are my life—for we possess nothing certainly except the past—were always with me

Waugh Brideshead revisited

Posted: Thursday, July 25, 2019 12:35 PM
Joined: 12/4/2011
Posts: 18309

Memories bring me sadness and pain. Screaming at an uncaring universe sounds reasonable.

I do think it is very important to share ones feelings. I know I have felt better when doing so...not that it has a lasting effect.

Eat a third and drink a third and leave the remaining third of your stomach empty. Then, when you get angry, there will be sufficient room for your rage.  

Babylonian Talmud, tractate Gittin




Posted: Thursday, July 25, 2019 8:58 PM
Joined: 6/15/2016
Posts: 120

Mainer1..Thank you for sharing your insights.  You have found ways to bring your own life into focus and still care for and honor your DW.

I value everyone’s viewpoint. A hug to you Michael Ellenbogan.  I am reminded I have much to be thankful for.  I am glad for today.  I realize I could die before my DH and I do love life.  I’m glad to still be here.

I’m sorry we all have to be here..but I’m glad we can share this. It is a valued source of support.  

Jo C.
Posted: Tuesday, August 27, 2019 9:03 AM
Joined: 12/9/2011
Posts: 10733

Sometimes, in our Posts, there is such deep, crystal clear wisdom and such wisdom is usually based in simplicity . . . .

I especially thank Victoria and Mainer; your Posts really resonated with me; I have learned from your input that which will be helpful to me both now and in  the future and it makes a difference.


Posted: Tuesday, August 27, 2019 9:11 AM
Joined: 2/2/2014
Posts: 5534

Now and forever
you are a part of me
And the memory cuts like a knife
Didnt we find the ecstacy
Didnt we share the daylight
When you walked into my life
Now and forever
I'll remember all the promises still unbroken
And think about all the words between us
That never needed to be spoken
We had a moment
Just one moment
That will last beyond a dream,
Beyond a lifetime
We are the lucky ones
Some people never get to do
All we got to do
Now and forever
I will always think of you
Didnt we come together
Didnt we live together
Didnt we cry together
Didnt we play together
Didnt we love together
Now and forever