That conversation

littleme

 I have just come back from visiting DH in the NH, where he has been for almost 5 years.

Today we went through almost all of the photos in his album, which he still seems to enjoy. Did not mention his brother's death (heart problems, but DH is convinced it was suicide). He did get somewhat anxious afterwards, saying the usual, he didn’t know where he was, what to do, how to do it, his brain was spinning, his brain was gone, he was feeling ‘Wibbly wobbly’. etc. He looked so weary. I tried all the usual reassurance that I was taking care of everything, that he didn’t need to worry, that I would walk him back to the lounge etc, but he was still distressed. 

Eventually I talked about how hard he had worked over these last years, trying to defeat this ## disease, and said that if he was too tired, it was ok to stop fighting. I said he could choose to just go to sleep. He looked into my eyes and said ‘And never wake up?’ I said ‘yes’. I am sure he understood the conversation, and that I was giving him permission to stop fighting.  

We talked a bit more about how much we love each other, and how we always would, whatever happens (we have been married 53 years in August). He did seem less anxious. I gather that he has been thinking about dying. I know there is no possibility of suicide or assisted death, but I remember how his Aunt just turned her face to the wall, when she had had enough. His father also did something similar, though he was already very ill in hospital, and it was quicker than aunt's passing. 

Will he remember any of this conversation? Who knows? But he is failing physically, walking is becoming very difficult, and staff say he has lost 2 kilo over the last month. They are ‘feeding him up’ with milkshakes, wish they would not. 

When I left, saying I would see him again on Wednesday, he was a bit lost, as if he wanted to say he might not be there when I returned. Maybe my imagination. He did watch me all the way to the door. But whether it is his choice or not, I pray that one night he will just go to sleep and never wake up. I will certainly miss having this regular contact with him, but I CANNOT ask that he continues to suffer in this way. 

I HATE this disease. 

Have I done the right thing?

littleme

M1

Oh yes littleme, what a poignant conversation to have. I think you handled it fine, and that's very sweet. We talk about death not infrequently-my partner has a lymphoma diagnosis too-and I am sure that one of these days when she's had enough she will probably just stop eating. She's fiercely independent, and she will want to control it I'm sure.

I would hold on to this memory. You did fine.

Mint

Little me you made my eyes wet.  How you love him.

ButterflyWings

Beautiful conversation. What a special, loving moment. You both can be at peace, whatever and whenever the outcome.

Jeff86

How very brave and kind of you.  Perhaps that’s the last, great gift we can give our LOs—to let them go.  Even as we would miss them terribly, we want their suffering to end.

My DW is late stage 6.  Yesterday afternoon she was anxious, eager—almost desperate—to see her husband, whom she said she loves very much but hasn’t seen in a while.  My efforts to reassure her, to calm her fears, were futile.  She had no idea who I am—finally landed on a friend of her husband’s!

When my DW experiences such anxiety, I think about how much longer this journey will be, and hope it won’t be long.  This morning, however, she is sweet, calm and loving—tells me she will love me forever—and I want more time together.  (I’m still not sure she knows who I am other than someone loving in her life.)

You did fine, little me.  Whatever happens.  You spoke honestly and with love.  That must always be the right thing.

June45

littleme,

I had this conversation with my Dad 20 years ago.  He was already on hospice because he was very ill from congestive heart failure and then he had a stroke. He was awake but he was unable to talk.  I already knew he was very worried about what would happen to my mom (his wife) if he should die before her. I reassured him that I would look after my mom, and that if he wanted to go on to be with his mom and dad and 7 siblings, that it would be alright. Shortly after that conversation, he went to sleep and passed peacefully later that afternoon.  And I kept that promise to him and looked after my mom until she died 12 years later.

riajean

Dear littleme, I've said repeatedly it was OK to move on, but my DH is strong physically, though there's little left in his brain.  He still knows me, hangs onto me for dear life, not waking until I'm up, searching me out if he can't find me, living life through me and that alone is tiring.  He no longer understands language, has a smile on his face all the time but for no reason, still senses my feelings, but doesn't know where he is half the time and cannot see or understand rooms or where they are.  He'll get up 5 times a night looking for the bath, and maybe using it once, who knows.  This disease is horrible affecting we, the wives/husbands and our spouses to a degree we never imagined.  I've asked God many times to allow my DH to sleep and not wake.  He's a good man.  He always tried to do his best.  Not perfect, has failings and shortcomings, but overall, greatly loved.  I wish for him to go forward, without me, to the afterlife.  He's done all he can here and he knows it inside.  I wish for you and your spouse the same.  This is not a bad thing or in any way a horrible thing to pray for.  We want to release them from their pain and from ours.  This is a years long illness that wreaks such havoc on us all.  Thinking of you.  Wishing you well.  Praying for you and your spouse.  May God have mercy.

storycrafter

littleme, thank you for sharing from your heart about your conversation. Your love and compassion shines through and you were profoundly kind in what you said to him. Your eloquence with words is a blessing to me reading this now, and I am moved to tears for all the complex reasons, thoughts, and feelings you've generously shared with us. Sending love and comfort....

Last Dance

 In a normal life none of us would tell our love ones that it was ok to leave this world, or would we want them to leave us here all alone. However the truth is that we don’t live normal lives, 

Our lives are a day to day struggle to keep our love ones safe, happy, healthy and at the same time to try to keep our self’s safe, happy, healthy. Day after day we watch them die a little at a time and we also lose a little of our selves along the way, because no matter how hard we try how hard we pray, how much care we give them, in the end we will lose the battle. At the end my Linda was further along then your husband, and could no longer talk or respond, but like you, I told her it was ok for her to go, in fact I wanted her to go. I was so tired of watching her suffer every day, knowing she would never get better. On June 17 she will be gone 4 years and I still miss her every day, but, I believe that she is with God, and waits for me someplace beyond the moon and the stars, and we will meet again in another place and another time.

God’s Blessings to you, and your husband, may his mercy and grace be with you as you continue on your journey until the end. Richard 

We ALL HATE this disease. 

Have I done the right thing?   Yes you have done the right thing 

 Littleme   You should change your name to BIGME

  

Pinkscarf

Dear littleme,

What you do from your heart is always the right thing. 

This ## disease has turned us all inside out and back again and left nothing in its wake but grief. We are all here with you. Stay courageous.

zauberflote

Littleme, yes you've done a very right thing, which undoubtedly took much courage. I think you gave DH a gift. 

As far as the weight loss/Boost drinks, if it's going to happen it will happen regardless of how much he eats. My petite mother, who had been fattened up 2 sizes (!) by MC food, continued to have a reasonably healthy appetite while losing most of both of those sizes in her last few months. It is possible you could have a care plan conference to talk about those supplement drinks.  

JulieB46

You are right, Last Dance--she should change her name to Big Me.

There is nothing small about this disease except maybe the amount of time we have not thinking about it.

ladyzetta

Dear Littleme,

Bless your heart,  you did the right thing please never feel bad about what you said. I lost my DH to dementia 3 years ago he also was in MC and so many times I prayed he would just go to sleep and not wake up. When that happened I was very sad but relieved knowing he was in a better place.  Hugs to You, Zetta 

littleme

Thank you all for the loving and supportive messages you have sent, you all gave me a huge lump in my throat reading them. I know DH will not remember , so I guess I will have to repeat the conversation a few more times in the future. Maybe it will not be so painful for me the next time around.

Until now, I would have said that DH was content with the situation. This has given me an insight into how he really feels --- and I can't help him. It makes me angry, and frustrated, and sad, and..................... But you all know those feelings.

Thanks again

littleme