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Coming to Acceptance
Army_Vet60
Posted: Tuesday, August 13, 2019 11:06 AM
Joined: 6/21/2019
Posts: 368


My wife returned home yesterday after my respite break.

It was a needed break, but running around wild for five days helped me get to a place I need to be now and moving forward.

I went out, did karaoke, shot pool, danced, took walks, etc. Most importantly, I talked to friends who had avoided us, and drank more than I should have.

I learned something about myself talking to them. A lot of them said they stayed away from us because it was too painful seeing DW as she is. They couldn't get past remembering DW as she was. Every night we're all drinking heavily talking about this, and at the end of each night, I'd go home and lay in bed looking at the empty space next to me and wishing DW - healthy DW - was here. Then the light finally came on.

I have to accept my healthy wife is gone. Helpless, dying DW is here. I can't keep looking at her and trying to make her something that's gone.

That's what's killing me, and it's not helping her. Her needs are simple and short term. I need to accept her as she is, set my sadness aside, and focus on the present and the future. At this point, the past is an anchor trying to pull me underwater.

I CAN do that.

 I've been feeding her, changing her, holding her hand, medicating her, talking to her. That's all good. The only other thing I need to do is just appreciate that I'm the one who gets to do this for her. I'm the one she chose to be with the rest of her life, and I wanted that, so I get the honor of being the one to comfort her when she has to leave.

Yeah, it was actually a tough week, but it's helping me grow up, even at age 60.


Ed1937
Posted: Tuesday, August 13, 2019 11:12 AM
Joined: 4/2/2018
Posts: 1419


I guess I was lucky to being able to accept the reality right from the start, and I attribute that to this forum. I signed on 2 or 3 months prior to DX..

As for being able to set your sadness aside, if you can figure out how to do that, please share the secret. I know a lot of people who would be grateful.


Army_Vet60
Posted: Tuesday, August 13, 2019 11:38 AM
Joined: 6/21/2019
Posts: 368


For me, it's tapping into my past life as a soldier. Death in hostile environments played a big role in my job. I saw a lot of on the job deaths, military and civilian, but I always had to stayed focus on the missions regardless. My performance did play a role in saving others and minimalizing casualties.
 
However, I needed help for PTSD because I forgot to embrace the sadness I set aside, and it festered inside me and became severe depression and nightmares. The PTSD caused me to retire from military service.
 
The time to mourn and embrace the sadness is when the mission ends. My mission right now is to ensure my wife's comfort and feel good about accomplishing that.
 
When she dies and my next mission is her funeral, I will fully embrace my sadness and grieve for her.
 
 Ed1937 wrote:

As for being able to set your sadness aside, if you can figure out how to do that, please share the secret. I know a lot of people who would be grateful.



White Crane
Posted: Tuesday, August 13, 2019 4:43 PM
Joined: 2/27/2017
Posts: 42


Army Vet, thank you for posting this.  I needed to hear you talk about accepting your DW the way she is now.  I, too, am coming to that conclusion.  This disease is changing my DH into someone else and I don't like it one bit!  But I love him and am realizing the man I married will never be the same.  Accepting him as he is means I will stop trying to make him respond normally to conversations and situations.  He can't.  He would if he could but he can't.  That is a hard truth but truth is better than living in denial and becoming bitter.  Your DW is blessed to have you for her husband.  Thank you again.
Marabella
Posted: Tuesday, August 13, 2019 5:09 PM
Joined: 2/2/2019
Posts: 132


ArmyVet60, thank you for sharing your thoughts and feelings with such openness and honesty. Your post brings tears to my eyes and an ache to my heart.  I hope the peace you have found will carry you through the rest of the journey. Your DH is so lucky to have you in her life!
Lorita
Posted: Tuesday, August 13, 2019 5:57 PM
Joined: 12/18/2011
Posts: 10627


Acceptance is hard - we all wish for miracles.  She would do the same for you if the shoe was on the other foot.  We have to know that.
Army_Vet60
Posted: Tuesday, August 13, 2019 7:14 PM
Joined: 6/21/2019
Posts: 368


I believe you.
 
I fed her baby food today and she fell asleep. I lay next to her and put my arm around her. About 15 minutes later she kissed me on the cheek.
 
I know if it were me, I'd be getting the baby food from her hand.
 
 Lorita wrote:
She would do the same for you if the shoe was on the other foot.  We have to know that.


Army_Vet60
Posted: Tuesday, August 13, 2019 7:22 PM
Joined: 6/21/2019
Posts: 368


White Crane, Mirabella,

Thank you for your kind words. It really does help me that there are others going through this who understand, and it really does help me to know that I can also help others making their way through this nightmare.


Seasons In The Sun
Posted: Tuesday, August 13, 2019 10:19 PM
Joined: 5/21/2018
Posts: 208


Army_vet-60

I hear you. It's a tough road. Stay Strong . best too you.


Last Dance
Posted: Wednesday, August 14, 2019 8:40 AM
Joined: 5/2/2013
Posts: 262


 Let me tell you something; spend every minute of every day being thankful that you can take care of her. Sit by her side, hold her hand, kiss her, and hug her, because one day she will no longer be here with you, and because of the care and compassion you gave her,  you will be able to live your life without regrets or anger, or PTSD  because you did the best you could, and was there for her. Some people on this board think of their LO as nothing but a shell, but in reality that is not true. In them is a beating heart full of love that you shared it just no longer knows how to convey that message, but it is still there.  No matter what any of us did in our life care giving is the hardest thing we will ever have to do. Take care God’s Blessings to you.  Richard 



Army_Vet60
Posted: Wednesday, August 14, 2019 11:02 AM
Joined: 6/21/2019
Posts: 368


The nurse just left after checking DW.

The nurse asked me how my respite went, and I told her. She said it was a very good thing I've found acceptance...

DW can't hold her head up. It's cocked to the right on her shoulder. My wife is also on morphine starting now.

 


LizzieC
Posted: Wednesday, August 14, 2019 2:03 PM
Joined: 3/28/2018
Posts: 221


Army_Vet60 wrote:

The nurse just left after checking DW.

The nurse asked me how my respite went, and I told her. She said it was a very good thing I've found acceptance...

DW can't hold her head up. It's cocked to the right on her shoulder. My wife is also on morphine starting now.


Oh my...I am reading between the lines...but it sounds like the respite was good timing and will give you the endurance you will need for the days to come.


Army_Vet60
Posted: Wednesday, August 14, 2019 2:07 PM
Joined: 6/21/2019
Posts: 368


Yep. I think I understand now why the nurse was so insistent I take a respite break last week. I'm sure she saw this coming.
 
 LizzieC wrote:
Army_Vet60 wrote:

The nurse just left after checking DW.

The nurse asked me how my respite went, and I told her. She said it was a very good thing I've found acceptance...

DW can't hold her head up. It's cocked to the right on her shoulder. My wife is also on morphine starting now.


Oh my...I am reading between the lines...but it sounds like the respite was good timing and will give you the endurance you will need for the days to come.



selkirk60
Posted: Wednesday, August 14, 2019 10:17 PM
Joined: 1/11/2018
Posts: 93


Sadly, it does sound like she is declining.  Remember to take care of YOU too during this time.  Try to get some uninterrupted sleep, maybe a volunteer can sit with her so you can nap.  Eat regularly even if you don't feel like it.  You will need your strength. We are thinking of you.
Mrs. O
Posted: Thursday, August 15, 2019 1:09 AM
Joined: 8/1/2017
Posts: 286


ArmyVet,  You are amazing. I’m glad you found acceptance. I too feel more at peace since I have stopped trying to preserve what I once had with my DH. It’s gone, and every day is different now. He needs me to focus on his current needs, not pressure him to be who he no longer is.  

I’m so glad that your sweetie gives you kisses. You deserve that. You will remember that, and we will all remember that about the two of you. 


yogi60
Posted: Thursday, August 15, 2019 9:06 AM
Joined: 2/22/2017
Posts: 78


You are a kind man. It's encouraging to me to read about your journey and feel the love and tenderness you have for your wife, even in the midst of this awful disease. Thank you for sharing so much. It helps you. It helps us.
Army_Vet60
Posted: Thursday, August 15, 2019 2:36 PM
Joined: 6/21/2019
Posts: 368


Thank you everyone for your kind words.

The Head Nurse just left.

My wife has been in a fetal position for the last 40 hours.  It's due to the Parkinson's contracting her muscles. The morphine is helping her with the pain.

My wife hasn't eaten or drank water in 40 hours. The nurse can't say yet if my wife will eat or drink again, or even wake up. Some telltale signs haven't shown up yet.

She is advising me to leave DW alone as long as she appears to be comfortable. If she starts moaning, give her morphine. She said my wife may slip into a non-responsive state eventually if she doesn't wake up. She said at that point my wife won't feel pain anymore. The nurse is doing her best to prepare me and spare me the stress.

My wife is five foot four and now weights maybe eighty pounds.

My only wish for her is to reach that non-responsive state ASAP.

At least she'll be out of pain, and she already told me Tuesday she wanted to say goodbye.
Beachfan
Posted: Thursday, August 15, 2019 2:48 PM
Joined: 2/1/2018
Posts: 321


My heart hurts for you.  God bless you and your DW.  I will pray for you; it's all I can offer.
Marabella
Posted: Thursday, August 15, 2019 3:11 PM
Joined: 2/2/2019
Posts: 132


Thoughts and prayers are with you and your wife.
Ed1937
Posted: Thursday, August 15, 2019 4:04 PM
Joined: 4/2/2018
Posts: 1419


I am so sorry it has progressed as it has. Good thoughts and prayers coming your way.
CatBallou729
Posted: Thursday, August 15, 2019 5:09 PM
Joined: 3/10/2019
Posts: 60


 

So sorry to hear this.  Wishing you strength and peace through this difficult process.


LizzieC
Posted: Thursday, August 15, 2019 5:15 PM
Joined: 3/28/2018
Posts: 221


We can't be there with you in person, but know that we are with you in our thoughts.
EdiBug
Posted: Thursday, August 15, 2019 6:16 PM
Joined: 12/28/2018
Posts: 21


Army Vet: I can only imagine what you are going through right now. I'm praying for peace for you both.
Sweetwater
Posted: Thursday, August 15, 2019 6:35 PM
Joined: 10/6/2016
Posts: 170


Army-Vet, I am so sorry for what you are going through. We think we are prepared for these situations, but I found that I really wasn't. It is so very hard. You have done your best and that is all any of us can do. I wish you and your wife peace. Sweetwater.
Mimi2
Posted: Thursday, August 15, 2019 7:55 PM
Joined: 5/8/2018
Posts: 51


Know you and your DW are in my thoughts and prayers. Stay strong...
w/e
Posted: Thursday, August 15, 2019 9:31 PM
Joined: 3/7/2012
Posts: 1707


Peace and tranquility with serene acceptance. Yes, indeed.

Follow the nurse's guidance and advice to a T.

And continue on whispering sweet nothings into your beloved's ear. Her heart hears and feels the gentle caresses of your voice.  Your beloved will secretly keep and take with her the loving and caring sound of the echo of your voice to the beyond, beyond.

This is an intimate moment. Full of grace. With boundless love in the heart. A sacred moment. Not to be forgotten.

From here to there... Kisses and hugs to the both of you.


piozam13
Posted: Thursday, August 15, 2019 10:35 PM
Joined: 7/26/2019
Posts: 29


Army_Vet, I feel your pain.  But your attitude is admirable.  I wish I could have your strength when it's my turn.  You're helping me prepare for what's coming.
Nowadays
Posted: Friday, August 16, 2019 12:03 AM
Joined: 1/1/2015
Posts: 33


I’m reading Grace in action here. Thank you for sharing.  You continue to heroically care for your wife, please make a promise to her if you haven’t already that you’ll do the same for yourself moving forward. Wishing you both peace with the acceptance.
Doityourselfer
Posted: Friday, August 16, 2019 1:17 AM
Joined: 9/5/2017
Posts: 321


You're a very caring husband.
Mrs. O
Posted: Friday, August 16, 2019 1:33 AM
Joined: 8/1/2017
Posts: 286


ArmyVet,  Wish I could research out and hug you. Words on a screen seem inadequate. But know that you both are in my thoughts.
Kaswife
Posted: Friday, August 16, 2019 6:27 AM
Joined: 6/15/2016
Posts: 50


ArmyVet,

Grace and peace to you both.  Prayers coming your way.  It’s just a hard road to walk no matter what.  In your corner and sending caring thoughts as well.  You are doing..and have done your best.  It’s enough.


Keep It 100
Posted: Friday, August 16, 2019 11:15 AM
Joined: 2/26/2017
Posts: 384


I ditto Mrs O. 

Words on a screen cannot convey the lump in my throat as I read all of this. 


modo2
Posted: Friday, August 16, 2019 11:16 AM
Joined: 2/8/2018
Posts: 48


You have taken excellent care of her and she has shown you that she knows this.  Take care of yourself today and in the days ahead.
selkirk60
Posted: Friday, August 16, 2019 12:55 PM
Joined: 1/11/2018
Posts: 93


So sorry to hear you are getting close to the end.  I sat a death vigil with my 97 yo mom who died of dementia about three weeks ago.  It will be much harder for you with a wife rather than a mother, and since your wife is so young.  If you have the strength to be there with her,  she will know you are there and it will comfort her and you can be proud of yourself later for making the journey beside her.  But if you aren't able (and some people are not) she will understand and you should not feel bad. You have done so much for her already.  I am glad you have hospice there to help both of you. Good thoughts coming your way.
Army_Vet60
Posted: Friday, August 16, 2019 1:45 PM
Joined: 6/21/2019
Posts: 368


Thank you, everybody, for your kindness. Everything I've just read is much more than words on a screen. I feel the presence of 30 or more friends embracing me and my wife whereas we were alone before.

If the nurses tending to my wife are accurate, my wife's suffering could be over in 2-3 weeks.

They've advised me to leave her alone, do things to stay occupied, and tend to her pain when she needs Morphine. Eventually, she'll become non-responsive and out of pain. The nurses will continue to help me keep her clean and groomed until the end comes.