Mag ended with this in one of her resent posts. And it hit it out of the park for me. As so many others have expressed, this is how I feel. I pray almost every day that it will end soon for my DH and that he may not feel any pain or fear in the end. And the flip side of doing that is exactly "I feel like I'm wishing our lives away." How sad that is the state of so many of us here.
Last night I was overcome with utter sadness. I sit and cried for over an hour. Not for anything I could put my head around, just a general feeling of sadness.
I got a new Digital Camera and am taking a one month Online Photography Course. I may be in this AD Prison, but I can step on the porch and take pictures. Then I share them on Facebook. Learning lots and cheers me up. It's a small thing, but a thing nevertheless... Dear blue, is there anything you can do like that?
I do small sewing projects and do enjoy that. Just the last few months have taken their toll on me. But will endure. MsAbby, glad you found the online course. If I did not have the internet I would go stark raving mad.
blue my heart goes out to you right now. You are so young what a challenge you are facing. I just offer you my love blue, and of course, know how you feel. Those deep sad feelings will keep popping up. When they are really really hard like they are now for you, it is a wonder a human heart can bare so much.
Blue, I too have been overcome by sadness & just start crying (usually it's when I am driving in my van). Maybe it's a song I hear, or something visual that reminds me of the “good ole' days.” I also pray for a quick & peaceful ending for my DH. I even tell people who I know will understand that it would be a blessing if a heart attack would take him. Sad to think that way, but a reality to me.
MsAbby, I would love to see your pictures on facebook. My name is in my profile & I would love it if you would “friend” me.
Blue - I totally understand what you said. Utter sadness is like a sweater I wrap myself in almost daily. Last night I yelled at DH for peeing the bed. What was I thinking yelling at him? He got soooo upset that he tripped and fell, and today I feel like the meanest woman on the earth. It's such a sad, sad disease. :(
Blue my heart goes out to you, to all of you who are still suffering so. ((gentle hugs))
Once upon a time I had similar thoughts drifting through my mind. These were in the time when Lynn was suffering emotionally and later when he seemed so lost to me. Now we are late stage, though Lynn is not who he once was, I do dearly love him so. He is so happy in his world, he knows a peace in this world most never will.
So now, I pray God will let me keep Lynn with me for as long as possible. I imagine that must seem so strange to some of you. But he isn’t suffering, he isn’t in pain, like I said he is happy… every day our visits are filled with laughter and love. To be able to spend this time with him is a gift I treasure.
I hope your loved ones find peace in their world, it will also bring peace to your heart. ((hugs))
It's interesting that the first topic I read today was this one, just after I came home from a discussion with our minister on this topic. I was agonizing over whether I was doing what is in my wife's best interest, or was I just wanting to get this whole thing over with. She spends most of her time sleeping, is having more trouble walking, but when awake seems happy in her own little world. A nurse here at our retirement home asked if I really wanted to give her the flu shot. If I decide against it, I want to be sure this is best for her, not me. I tell myself that I don't want her to linger in late stage 7, but even then is this more for me than for her? My minister had no answers, but suggested I bring this topic up to others who are going through the same. Blue, I know just how you feel. The big problem for me is that men are not supposed to cry.
Poppycock! Some of the strongest men I have ever know are the ones who did express their emotions. Let it out Marsh, crying is healing.
I think this is something we all have to decide in our own hearts and minds. Even though Lynn is late stage I do see quality in his life. I do give the flu and pneumonia shots. I figure if it is his time, God will come get him, shot or not. Wishing you peace ((Marsh))
Marsh, we got flu shots, and he died of a brain stem infarct. (The doctor guessed that., there was no autopsy). I would rather he go like that than having flu, struggling to breathe with chest congestion, all over body aches and coughing all the time. Flu is Miserable. The brain stem infarct was, as you know, instantaneous.
Blue..as many here, I wish for the same thing, an end to his suffering, I don't think it's wishing his life away... it's no life for him anymore now as it is. I'm sad all the time.... We had a massive storm here the other night, I was so scared on my own, just curled up in bed and cried.
Marsh....You maybe might want to think in the terms is this how you would want to live....or can you even call it living?? Each person is different. Shortly after my husband was dx I knew it was the "beginning of the end" and several months later I brought the subject up about when we die. I used myself as the example, telling him how I didn't want this or that and I what I did want. I stressed he needed to know what I wanted because he might have to make those decisions some day and I wanted him to know. (of course I knew that was doubtful). Then I just shifted the subject to him and asked him what he might want if he because very ill and where he wanted to be buried, etc. It was such a easy conversation early on and we got that out of the way while he still could talk and reason to a certain degree. Time and time again I am so grateful I had that conversation with him so when the end became a reality it was hard, but not as difficult since I knew he didn't want to linger if he could not go any place or do anything or know anyone.
I often feel a lone wolf here with some of my feelings. I don't know, to me I guess if Lynn is still able to feel love and express it, then yes he is "living". No he is not who he once was but I do see quality in his life. He interacts, he laughs and smiles and loves, I have to say, that's more than some healthy people have. I guess I have always trusted that when it is his time, God will most assuredly let me know.
When he sees me his whole face lights up and he smiles that smile that still makes my heart skip a beat. He is able to communicate, oh not like he use to, but he is able to articulate what he likes, wants or needs. He tells stories that make me laugh out loud, and he still tells me multiple times a day that he loves me. Kisses and hugs, laughter and smiles. What more could I ask for?
Judith I am glad you were able have that talk and that you now have peace. In the end, this is all that truly matters. ((hugs))
That would have been enough for me too Nikki...but, my darling Jim was like a a zombie. He didn't seem to understand anything or relate to me or others the last few weeks. He couldn't talk. He could barely eat. I would give him back rubs and leg rubs most every night. He loved me shaving him and then he seemed not to want to be shaven. I do think he began to know at the very end it was going to be the end and just let it happen. We both have always belived that our names are in the big book and when it is our time...it is our time.
I know what you are talking about even when they are very bad they can still have things that please them and simple pleasures. About a month before he died he would love for me to push him around the house in his wheel chair. I had bells on it and he would ring the bells. I called it his truck. Later he lost that pleasure too. Keep up the good work and make every day count and every week...of course you already know that...but, just keep it up.
well that brought tears to my eyes Judith........ I am so sorry your Jim lost all of his pleasures. I like to think that if Lynn does progess to that point that I would be like you, brave enough to let him go. Until then, I plan to fight for all I am worth to keep him as healthy and happy as possible, and yes, like you said, make every moment count ((hugs))
In our earlier years before dementia my husband said he wouldn't want to live if he lost his mind. If he knew he was like this he would do himself in. I don't feel quilty for wishing it would go faster for his sake, but I do when I wish it for my sake.
My husband has relatively more physical problems and less dementia--his diagnosis is Multiple System Atrophy. He feels he can still make his own medical decisions, but he doesn't want to think about what is coming and it is hard for him to get up the initiative to do much. We solved exercise by hiring a student to come help him do his stretching exercises, and he works out the schedule with her (with fairly rare mistakes) and enjoys talking with her. But there are several other things he could do that would prevent problems later--cath himself regularly or start the process of getting a suprapubic catheter and get tested for a C-PAP. I told him the other day that I wanted to know that he was making a clear decision to avoid things that would be unpleasant for him now knowing that doing so would shorten his life. He just said it wasn't time yet. You put your finger on it Marsh--I do think it is what he would want, but I am afraid I am going along with him selfishly for me. I also feel like I am a bad caregiver to not make sure that everything is done for him to live as long as possible.
Blue - many nights I lay in bed hoping I would wake up in he morning with him not breathing. He wears a CPAP, so I am sure if he died air gushing out of his mouth would wake me. IF that happens I have already decided I would do like Rose Kennedy - go somewhere and wait until he is cold so they won't do CPR. His dad went for years and he does not want to. My mom's last two years were not quality of life - she just sat in the wheelchair with no expression, had to be fed and looked at you with blank eyes. She had many health problems besides dementia (it was never diagnosed) and definitely had no quality of life. Every time they she was treated for fluid around the heart - CHF - I would question why? She had no life and would never had wanted to live like she was.
Nikki - you are one of the exceptions. I can't remember the last time my husband told me he loved me. Yes, he has thanked me a few times in the last 5 years for putting up with him, but that is about it. Many of us here seem to be in that situation.
Blue - you are not alone. I do not want my husband to run the course of this disease AND I do not want to go it.
I wish this life away, I wish he could leave now as this is getting horrible. No sleep for 3 nights chasing after him, despite his seroquel. I am going to try to get him admitted somewhere, anywhere, until the placement process is done.
Have they given you an estimate Coco how long it will be before the process is done?? How things begin to improve for you. I know it is so difficult. Keep us posted on how you are doing and what is happening. It helps to vent...so please vent as needed.