bluedaze, I have not been on this site for several days, so I apologize that I am just now reading this. My deepest and sincere condolences to you. My thoughts and prayers are with you and your family.
Well-I made it through the funeral and then evening prayer service in my home. Family and friends were all here with and for me. Tomorrow morning my son and family fly home. Two daughters will stay with me for a few days. After that I'm back on my own again. Well-I guess I'm at that "after" stage now but plan no changes in my life. I wish the love and strength given to me could be shared by others following in my footsteps.
Nora, I HATED hearing he was in a "better place". Our home was a good place and he loved being here. How can someone think saying "He's in a better place than when he was here at home with you" is comforting. I felt exactly as you do...but never said anything. I just know I'll never say that. It goes along with telling a woman who lost a child, "Well, you can always have another one!" Whaaaat???
Nora, At least you can now rest knowing that Bill is no longer suffering this dreadful disease. Alzheimer is no life for anyone and at least you can take comfort in knowing that he is no longer having to live the way he had to live for the last few years. Being in end stage 7 for 3 years. My husband has been in end stage 7 for 2 years now and I know how much you and Bill have suffered, his suffering is now over bluedaze, take comfort in knowing that.
((Nora)) in as much as I can, I do understand. I just can't put myself in your place, I am too much a coward. I fear the final good bye greatly! I will not feel his suffering is over........ his suffering ended when he lost his memory of what was happening to him. He is blissfully unaware now. How can he be in a better place, if he leaves me behind? ahhhhh, it is all so tragic! My heart literally aches for you....♥
This is why it is so difficult for me to know what to say to someone who loses a loved one here. To some it is a relief and of course I can understand that! But I imagine there are others who feel like I do.......in all the things I have ever read on this board, what you said seems the best to me.. ""I am sorry for the loss of your life companion and dreams of a future together"
((Nora)) I am sorry for the loss of your life companion and dreams of a future together ♥ Keeping you deep in my heart, thoughts and prayers ♥
Nancy B*, I think sometimes people, myself included, struggle to express their caring and concern when a spouse dies. Perhaps words that are meant to comfort don't always do so, but the thought is there.
Nikki, I believe it was Nora herself who said to another of us, "I am sorry for the loss of your life companion and dreams of a future together." Truly eloquent.
I have used the phrase "at last he is at peace" meaning that with Alzheimer's they are not at peace, but that they were in stages of having their bodies and minds shut down. And to most, Heaven is a better place than Earth. But each of us keep trying to find a new way to express our love, our sympathy, our concern....and all of these words are what we have to work with. "Our thoughts and prayers" are what make us us...but when you are grieving, you wish for a new turn of the phrase!
"I am sorry for the loss of your life companion and dreams of a future together." is truly eloquent and my favorite.
Thanks, Deb, for bringing this to the top. I've followed Bluedaze's struggle for the last two years since I first joined this group and just couldn't imagine going through end stage that long. Then I read about Sandi... I've been away from the boards for a while and it's hard to catch up but you learn to really care about the people here.
Bluedaze - I am only a few months "ahead" of you. When people said "I am sorry for your loss" to me, I didn't know what to say. The loss was not on 1-31-2010; the loss happened every day for the last I don't know how many years - when my DH couldn't remember our anniversary, the fact we bought the TV for our 25th anniversary, when he stood in the middle of the room and was lost, so very many losses that there are too many to count. Yes, my DH died on 1-31-2010, but that was the loss of his physical presence and, yes, that loss is still great even though I know he was suffering (my DH had severe pain, muscle spasms, and so much more) ... he was still "here" and now he is not. I don't know your experience, but for me, when my DH died I felt like the barrier between our hearts that had been created by the disease fell away. In a way that is very hard to explain, I felt and still feel closer to him in my heart than I did when he was alive and isolated by the disease (even though there were times even up until the end when I could, with God's help and a lot of hard work, reach through and connect with my DH.
My #1 piece of advice: be gentle with yourself. You have been through a living hell, one fully occupied with cares and concerns and flat out WORK 24/7. Now, if you are at all like me, you are feeling like you don't know what to do with yourself or your time. For me, it was like I was going 200 miles an hour in a car that was constantly falling apart with bits and pieces being ripped from the body of the car, but I had the peddle to the metal and was pushing it as fast and as far as it would go. Then, over night it seemed, the car disappeared and I was standing there going 0 miles per hour with no car and in the middle of no where without a clue as to which direction, if any, I should go. What did I do? I took a road trip for a week to Sedona, Arizona (a place I had been before with my DH) and, when I got back home, I just made a list of the things that I needed to do. Each day, I did what I felt like I could do and some days that was nothing; other days I whittled away at the list taking the most urgent first and often only getting to the most urgent (like going to the grocery store). For me, doing ANYTHING was hard - everything was hard - things I once did (even a few days before my DH died) was overwhelmingly difficult. But ... I did what I have been doing for so long ... I kept putting 1 foot in front of the other, not pushing when it hurt like before, but also not simply giving up. I kept reminding myself to be gentle with myself; not to push myself; if it hurt to do something that could wait, then I waited; I tried not to "read all about grief" because grief in our situation is different ... we have been grieving for a long time, besides I didn't want to escape into reading or analyzing what I was feeling; and I also did not go back to work right away (I took short term disability) so I couldn't escape in work. It has been hard, but I willingly admit that, for the most part, this life doesn't hurt as much as the life I had with my DH during the last few (or several) years. I miss my DH so very much, but he is no longer in pain - physical or emotional - and I am not hurting because yet another piece/chunk of my DH was taken away today and I am not afraid he will not wake up tomorrow when I put him to bed and I am not afraid he will not wake up in the morning and I know that he is dead and that I did everything I knew to do (though definitely not perfectly) and he is now at peace and is in God's presence. I shared in a post today my DH's description of what it feels like to be in God's presence so I won't duplicate the message here, but knowing how he feels gives me comfort. I hope it also gives you comfort. Please feel free to reach out to me if you would like to talk. You are in my prayers.
Sharan* you are so correct. When well meaning people ask how I am, or sorry for your loss I don't know what to say. I know they mean well. Do we ever get to the point of knowing how we are?
We have spent so much time focusing on how our loved ones are that we don't know how we are - this is true before our loved one dies. I don't know about you, but I spent so much effort trying to make sure my DH felt like "everything was going to be OK" or "everything is OK" and, even though it was not "me" to pretend, I did pretend. I pretended to be OK or that this thing or that thing really didn't matter (like ... it didn't matter that my DH forgot that we even had an anniversary ... as if it didn't just cut through my heart like a hot knife through butter!). All of that pretending ... sometimes pretending even for me, for myself, to help me get through the day ... now, the reason for pretending is gone. I am sad my DH is gone and I don't want to pretend any more. I am done pretending. If all the world doesn't like that I am sad or the fact I sometimes cry and don't even bother to get a tissue/Kleenex or that I am scared or that I am lonely or that I am relieved and doing my best not to feel guilty for feeling relieved or whatever I happen to be feeling at the moment, then the world can take a hike because I am done with pretending. That does not mean that I am unnecessarily rude, but I (and you) have the right to feel whatever we feel - good, bad, ugly, sad, and all the other feelings of the rainbow - any time and any where. I have been shedding the urge to pretend and am getting to where I know what I feel. I don't know if that means I know how I am. I know I am living and doing the best I can.
When people ask me how I am, I don't pretend any more. If I feel sad, I say "I feel sad." For me, it is hard to say how I feel, but the more I do it, the easier it gets. I do believe we can get to where we know how we are. First, I think it is important to accept ourselves where we are and however we happen to be at the moment with the understanding that we are changing from moment to moment and the certain knowledge that no how bad it feels that bad feeling will not last ... this too shall pass ... and we will be stronger, more loving, more compassionate, more capable, and more ... and, at the same time, we will realize that we deserve a break, we deserve love, we deserve being gentle to ourselves, we deserve all these things - not because "we earned it" but because God loves us and wants us to take good care of ourselves, like we took good care of our loved ones.
I also think we need to discover who we are today. There's the opportunity for some really cool stuff. We have walked through the valley of the shadow of death and we have survived. We are not the same people we were before we entered the valley. Now, we can discover and explore this new person that is us, that takes into consideration all that we have done and all that we have survived and wraps it up in a shiny new package. This, I believe, is our gift from our loved ones. I know Mike would want me to live, REALLY and TRULY LIVE. I have NO idea what that looks like, but I am willing to look for it and seek out what it means. Mike is happy now; now it is time for me to be happy too. I am not there yet (not by any stretch of the imagination), but it is my goal - to live, to thrive, to be happy. Surviving is not enough.
Sharan, I believe most of your comments above can be applied to most of us before our loved ones die. I think we "pretend" a lot during our caregiving years. What we think and what we show others is very different. Right now I feel pretty bad but if someone called right now and asked how I'm doing I would say "fine."
To the people on this site who have lost loved ones, I say "Bravo to you for all you've gone through so valiently. I pray you will find some measure of peace now and be able to live the rest of your lives to the fullest. "
Sharan* I am not bluedaze, but I am also a widow since December of 2009. I share many of the same ideals and thoughts you expressed above. I too, choose to be a survivor and look forward to this phase of my life. Just last week I made a couple "big steps" for me. I started a water aerobics class and also started a volunteer job with the local Art Center. I just called the Art Center -where I am not a member - know nobody there - and asked if they could use a volunteer. I called at the right time and they wanted me to come in right away. I have already met several new friends there and am looking forward to my- right now- one day a week job plus evenings that I want to work the receptions, art shows, etc. Next week I have volunteered at the local College/Artsbridge one day event where severley handicapped children and adults come for a hands-on day of arts.
Thank you for your interesting description of how things are "after" and I do so agree. Best wishes.
Bluedaze* - I am so glad. One of the things I discovered over the last few months is that my memory of events, both in the world and in my personal life, had become all mixed up. I couldn't remember so many things that it was both weird and disturbing. If you are experiencing this feeling of being "lost" and disoriented, please know that it is normal. I am just beginning to be able to put the pieces of my memory back together. One thing I did that helped a lot was go through my posts on this message board. It helped me to get a better sense of timing and the time line. You have posted so much (thank you!) that it might be a bit overwhelming and I would NOT recommend that you do it now, but there will come a time that you will want to put things into context and being able to access your posts may bring you comfort and closure. I have watched your walk and appreciated your support so very many times. One day, you may want to see and acknowledge just how much you have SUCCESSFULLY and GRACEFULLY walked through. I hope you give yourself credit for all that you have done and are doing and that you find peace and comfort in the loving care you provided not only to your DH, but also to so many of us out here who have been encouraged and lifted up in some of our darkest hours by your loving care and shining example.
Imohr - I am so proud of you! Those are, indeed, big steps! I am going to my doctor today (the one I have been going to for short term disability at work) and will be discussing returning to work. Yikes! It scares me to think about returning to work. I still feel so raw and vulnerable, but I know I can't live on the amount I will be getting soon (my STD has steps and I am coming up on a major step down) so I am going to go back to work. It reminds me of so many things I had to do while taking care of my DH. I didn't want to do so many things (admit that he was dying, pretend he was going to be OK, keep working while wondering if he was going to wake up, leaving him at night not knowing if he was going to wake up the next morning), but I did them and I can do this. That's what I keep telling myself. I also just keep walking ... even when it hurts to keep walking.
Sharan* Thank you so very much for articulating what so many of us feel, but are unable to put into words. Arms around us all as we now care for our broken hearts. Earning our *Stars*, or Purple Hearts was hard work, grieving is Hard Work. Thank God we have each other.
Bluedaze - you asked me in another thread how I was and that you hadn't seen me around for a while. I admit that I have been doing more lurking than posting but I did send you condolences on you loss twice and they didn't show up. I think that sometimes I hit the "back to discussions" button instead of "add comments" especially if I have been doing more reading than posting. However, you do have my sympathy and I hope you are doing well (or as well as can be expected).
Oh Nora, I just went through the same thing with my beloved Ralph on April 25th. It is so hard. God bless you. I believe there is a better place and our loved ones are whole again. You are lost and it is hard. It is all so new to me, but I do feel your pain. I was there with my daughter when he left us. You are not alone and you are loved by all of us.