Visiting a stage 7 patient

Crushed

DW has not had the slightest cognitive reaction for 3-4 years. She can still swallow but reacts to nothing else. She has excellent care. So why do I visit? It is no practical use to her and emotionally very trying for me.
But I do.

Quilting brings calm

My thoughts are that you are doing it because of the life and love you shared together. Quoting a meme on Facebook - ‘She may not remember me, but I remember her’.

Then there is the what if- what if locked inside that body, she somehow does know I’m there or not there?

You’ve been dealing with this disease for so long that you probably can’t remember not dealing with it. We all support you and want you to know we value you.

midge333

You visit because you love her and you love who she was before she was destroyed by this horrible disease. I am sorry.

trottingalong

https://alzconnected.org/discussion/comment/229035#Comment_229035

Quite a beautiful expression of words.

Donr

You might try to reduce the frequency of your visits.

White Crane

It’s what you do when you love someone the way you love your wife. I’m sorry it’s so hard.😞

Dunno

I've asked myself this same question many times. I don't believe it benefits either her or me to visit (but I do), and as you say, my wife also gets excellent care. If she could understand and respond to your question, what do you think she'd say.

jfkoc

I think you visit because of who you are. You want to see her and to check in with staff. To not visit at all might be more painful.

Dio

I think you visit because you want to maximize the remaining time you have with her. Your love is immeasurable! It's sad to see our LOs deteriorate before our eyes in the long goodbye that we must endure. But you'd regret it, too, if you didn't. Hugs to you…

Biggles

The deep love that we have for our loved ones is immeasurable, to abandon that love and the history that goes with it would be so intolerable and self destroying. The pain of this long goodbye is so very sad but it’s part of the journey together and that bond just can’t be broken. And so we continue as we only know how. My thoughts of care and love and respect are with you.

Vitruvius

According to the hospice nurse my DW is in Stage 7f, as she can no longer smile or make any other facial expression. She cannot hold her head up, and has not opened her eyes or spoken a word in months. Her hands are permanently clenched holding rolled up wash cloths. But she can still respond to food, when you tap a spoon to her lip she will open her mouth and accept puréed food. Otherwise you would think she was comatose.

Yet like you Crushed I still visit three times a week at dinnertime and feed her. The hospice nurse calls me twice a week after their visit to update me, and I am confident that she is getting excellent care. And yet I go. I talk to her as I feed her, updating her on what little is left of my life. And perhaps that’s why I go, because my love for her is one of the few things I have left.

SDianeL

we go because we love them. When my husband was dying the nurse said to talk to him because the last thing to go is their hearing. So I did. I also think maybe he could sense I was there even if he couldn’t respond. It’s so hard. Sorry. 🙏

Jeanne C.

I think it’s because we remember for them. My husband is early stage 7. He sleeps most of the time. He eats with cuing for each bite. He’s in a wheelchair. But I visit most days. If he’s awake I tell him about my day or stories about our life together. If he’s asleep I hold his hand and read or fuss with my phone. I know he can’t follow conversation. I don’t think he knows who I am. But I remember him. I know who we are to each other. I remember for both of us. So I go. It’s okay to take breaks - you need them. But we keep going because we remember. Peace and comfort to you.

fmb

Like everyone above said, we go because we love them. When DH and I married I vowed that I would be with him "in sickness and in health" and meant it. But even without that vow, I would still be there. Some days are very difficult emotionally for me, today was one. But other days I sit with him in silence and it's like it's just the two of us in the entire world. The veil parts for a few moments, and I get a glimpse of eternity.

elainechem

I don't think we can actually know how much they understand about what is going on around them. Since we can't know, I think it's best to treat them as though they are still present with us. This is called "The least dangerous assumption."

Phoenix1966

Your user name says it all. She was stolen from you and you go back again and again to be able to touch her, talk to her and feel some kind of presence that might still be there, buried under immeasurable layers of this heartless disease. It’s like she’s caught in amber, there but not there. I suspect, given the kind of person I think you are, you don’t really have a choice.

Crushed

still visiting

Jgirl57

Good morning Crushed, no words just good to see your post .

jfkoc

I think of you often…wondering how you and your dear wife are and where you are off to. Wish you would drop in more often.

ARIL

I feel for you so much. You visit not to provide practical care but because you are compelled to show your love. In times to come you will know that you went with her every step of the journey. Blessings to you.

Quilting brings calm

thank you for the update Crushed

Timmyd

“When you love someone, the best thing you can offer is your presence. How can you love if you are not there?”

― Thich Nhat Hanh,

White Crane

thank you for the update, Crushed. I was just thinking about you a day or so ago wondering how you were doing and how your dear wife was doing.

terei

Crushed’s post was from November. I dont think he has updated since then.

Quilting brings calm

https://alzconnected.org/discussion/comment/243536#Comment_243536

this last update was this morning at 6:48

Sweetwater

Good to hear from you Crushed. I have been following your story since 2014 and that is a long time, too long. Hopefully you and your lovely wife will be freed soon.

SDianeL

thinking of you and your wife. Good to hear from you. 💜

Vitruvius

I was beginning to wonder about you and the status of your DW. My DW is Stage 7f, they keep telling me her time is near the end, but she is still here. So I have been most interested in your experience. Good to hear from you. I also continue to visit.

Arrowhead

I don't know if my being there makes any difference or not. I go just in case it does.

Carl46

Staff at my mother's NH told me they have residents who never have visitors. Their families drop them off, drive away, and are never seen again. I think my presence and occasional criticism improved the quality of care.

ghphotog

My DW is stage 7 and has been in MC a little over a year and I have visited her daily mornings and afternoons. I'm so predictable that if I don't show up the staff start asking the nurse to call me and check on me. :)
Why do I do it everyday? I can't imagine not being there for her whether at home or in MC. I make sure she is comfortable, not in pain, not slumping over in her geri-chair, get updates on if she ate and how much, I bringer a vitamin water through a straw, needs thickener now, so she is hydrated. I have to hold it to her mouth because she can rarely hold the bottle herself or find her mouth for that matter. I hold her hand and tell her how much I love her. IDK, It's just that way.