The Hospice nurse told me today that Bill is having more periods of cyanosis (blue color), inability to swollow or ambulate, and lack of responsiveness. His chest is clear and vital signs normal. When I could wake him all I got was a fleeting blank stare. I have been grieving so long-but as he declines I am so scared. I have known for too many years that dementia is a fatal disease-but knowing and accepting is not the same thing.
bluedaze, hugs to you. This is one of those rocks and hard place scenarios. Just because the mind knows something is so, doesn't necessarily mean that the heart will follow. I agree with the scared part. I am so scared that I won't make the right decisions for my husband between trying to balance his wishes, my emotional needs/wishes and what is right for him. Sometimes, I really feel as though the tightrope that I am on gets awful slender. I don't want him to go, I don't want him in pain and I know that if he could talk to me he would tell me to let him go (actually he would say take me out and shoot me!).
Bluedaze, perhaps the hospice nurse is trying to prepare you now that she sees the end drawing nearer. you are quite right, the mind does not hear what the heart is speaking. the loss of recognition along with body functions is the way to ease the pain and transition into the next world. for your sake i hope he doesnt linger longer than necessary. ((HUGS))) Divvi
bluedaze, do you ever wonder if their spirit has already left when all you get is a blank stare? But their body just tries to keep going? We're never really ready, are we. We will be here for you.
bluedaze, it is horrible when you look in your loved one's eyes and see total blankness. I saw that in my mother's eyes when she was dying and I knew she had left. It just took her body longer to catch up. These next weeks are awful, and I am really sorry you are having to go through this. My thoughts and prayers are with you. (((HUGS)))
I'm so very sorry for the pain you are in right now. After my MIL died, my FIL was diagnosed with severe AD. We all figured when she died, he did,too. It just took a little longer for his body to catch up. Very sad to watch.
bluedaze, this is what was happening with Glenn last week. Nothing dramatic, but just these episodes of blue feet and hands. We lost him Saturday morning very quietly. Funeral is today. I will log in again next week patricia
Blue daze, I am praying that God will give you strength and comfort and that Bill will have a quiet and peaceful passing. Patrica You are in my prayers, you give me strength with your strong spirit. I am so glad that Genn had a quite peaceful passing. Love and hugs to you both. Phyllis
dazed i'm so new to the site that i don't know how to contact you -- i read ypur comment and i so agee with you -- is there some way we could "chat"? if you answer this I hope I can fine it my email is fpapoo@comcast.net sally
Sally, I would suggest that you modify your account so that your email shows up there. (Click on the "personal information" to the left, and then click on the box under your email address that allows your email to show, and then click on "save" at the very bottom of the page.)
That way, it can't be picked up by scammers who scan discussion forums -- we have to have an account here and be logged on to see email addresses in the accounts.
Then go back and edit your posts, removing your email address and saying "see my account" instead.
well, bored better than many other emotions, bluedaze; I've been thinking about you.
But isn't boredom a factor for so MANY of us? Particularly like on this long holiday weekend'; if we don't want to shop...
Well, my daughter went to the zoo today (we're both docents there, but on different days) and got to see our new baby giraffe. She should be in the paper tomorrow! She's something like the fourth baby for this mom, who is not a terribly GOOD mom but she does let the baby nurse, anyway. The other mom is due pretty soon. They have to be kept inside when the weather's under 50 so we'll see a lot of them, and by the time the weather's better they'll be good and strong to go romping in their big enclosure!
I am truly sorry for you at this time. It must be just devistating to see your DH's eyes clearly absent. I am thinking of you. Let us know how he is today.
bluedaze - I think the end comes when it wants to. You may recall the booklet, "Gone From My Sight" which you can google and download. I found it very helpful. Now, four months have passed since Hank died and I find it continues to be difficult. For some of us there just isn't that 'long good-bye'...
frand, glad you're still checking in with us. You have so much to share. I'm so sorry you had to lose Hank so quickly but he was also spared so much. Four months is not enough time to get over losing your DH. There's a period in the grieving process where a deep longing for that person sets in. You may still be there. {{{ Hugs }}}
((bluedaze)) I am so sorry for all you are going through. My heart breaks for you, for every single one of us here. "I have known for too many years that dementia is a fatal disease-but knowing and accepting is not the same thing. ".........~sigh...... I can think of no truer words. You are in my heart, I wish you peace. Love, Nikki
Bluedaze, I just want to say I'm thinking of you and understand that this is the strangest kind of thing. We want our loved ones to be healthy, we know they can't survive this, we wonder how long, then it seems, the TIME comes and we find ouselves thinking NO..NO. and it is we who aren't ready after all. Just know that I'm thinking about you and praying that through these next days or hours, you'll be strengthened and find comfort in knowing that we are 'with you' here.
bluedaze,i don't get to post that often anymore but i feel so bad for you. i know it is terrible and our prayers are with you. take care of yourself. jav
This doesn't get any easier. Bill is now a dead weight transfer. Appears to be afraid of falling and buckles his knees when the staff tries to stand him up. While I was feeding him lunch he is able to swollow but doesn't remember how. He sleeps most of the time. At least he seems comfortable.
From those of us who have traveled this road, to those who will, we offer our shoulders for you to lean on, to cry on, to steady yourself on. This is a hard time, and you will spend a lot wishing someone would just tell you how many weeks, days, hours, and minutes. I spent a lot of time agitated, divided between "get it over with" and "don't take her." If you can at all...just let it be what it is. Think about anything positive that you can. For example, if you get no response and a blank stare, tell yourself that they are there today for you to kiss them, and that they know it inside, even if they can't let you know.
The knowing that the end will surely come, however slow, is a certainy but it still seems far away when the AD is in the first to middle stages but when it get to the edge of the final stage and then the absoulute final stage, TRISINGER said it best. We want to know how much longer there is......months, days, hours. The reality of the coming end is the sadest feeling of all. A while ago, in this forum, someone said that nothing in this AD process is as bad as the last breath. That has stuck with me. Bluedaze, my husband is a little behind your husband. His hands are nearly pure white and seems like his skin is stretched tightly over his bones. He lost another 7 pounds in the past two months and he was already skin and bones. He rarely can get food to his mouth on his own since his brain is no longer telling his hand to pick up the food and even if I place it in his hand, rarely will his fingers close around it let alone get it to his mouth. I now have to spoon feed him and I also give him 2-3 cans of Ensure everyday......but the weight is still falling off of him. The look.........oh my gosh........the look in his eyes and face is so empty. It is as though his eyes are trying to see something but not seeing anything. I can't imagine what he actually does see. Earlier someone said her husband would have said take me out and shoot me...........we all can relate to that. My husband would have demanded it or done it himself. AD has to be anyone's WORST nightmare. My heart aches for anyone out there who is finally near or at the end stage because I know how bad my heart aches for myself and my husband and the life we had together. Bluedaze, my thoughts are with you and if I could, I would come there and hold your hand but know you are in all the hearts of those who know what you are facing.
Well, but bluedaze, perhaps the soul IS gone, to a better place, or maybe visiting there from time to time. Wouldn't that be better than still being here with the body? So many people talk about their ADLOs seeing loved ones who are already gone, talking with them and apparently receiving comfort. It would be so very nice if that were real.
I like to envision that the glimpses into the 'other side' during the end stages, are so awe-inspiring that the soul cant wait to leave. the blank stare is just the portal into the black hole leading to the glory and heavens beyond. Divvi
I don't often post but I check in often and read and always come away with something.
divvi, sunshyne, trisinger ... your words help us see things in a different light. and that is so important. There is enough pain in this situation to last a life time. We need to be kind to ourselves and choose to seek peace.
bluedaze, I just wanted you to know that there are probably others like me who have read your posts and are thinking of you at this difficult time.
I also haven't posted for awhile .But I do remember the day my husband passed ,He open his eyes for the first time in days and it was just a blank stare . We thought he was waking up but instead he just stared in space my only comfort is to think he was with the ones he loved who had already passed and were welcoming him. bluedaze please except my prayers and thoughts be with you and your loved ones.
Oh Bluedaze, I am so sorry to hear your news, I just found this and had no idea what you were going through. My heart goes out to you. Please know that I am thinking of you, and I hope that you are able to find some peace with your situation. I know it has to be really tough.
Bluedaze, It is the hardest job in the world to watch our loved ones die. My husband died at home in September with hospice, not from AD but from a massive MI. My heart goes out to you, know you are in my thoughts and prayers sending you the strength you will need for the journey ahead. Hugs to you. Hospice is wonderful in helping us navigate the journey.
Asy, so sorry about the loss of your husband. My DH says he hopes he can go with a heart attack. It's kinder than the end stanges of AD. It's so hard no matter how they go. Glad you are staying with us. Our hearts go out to all of you who have lost your LO.