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    • CommentAuthorcassie*
    • CommentTimeFeb 20th 2017 edited
    Thanks AliM, it is too soon for you to be facing too much reality yet so be gentle with yourself.
    • CommentAuthorLindylou*
    • CommentTimeFeb 21st 2017
    Cassie, thank you for your sharing. It is my hope, realistic or unrealistic, for my partner to be home beside me when she passes. Your story is important and spoke to my heart.
    It has been five months since my husband died. My daughter decided that we should go on a vacation so she made all of the arrangements and we went to a wonderful place that I had never been before. We hiked amazing National Parks, ate sinfully good food, and indulged on having a good time. Other than thinking I might die on one of the high altitude hikes (seriously - I said to her, "you shouldn't push old people like this!" We laughed about it later, when I clearly didn't die) it was a wonderful time. I think that going some place where there were no memories to haunt me, staying incredibly physically busy, and taking in an environment both alien and gorgeous helped to make it a therapeutic sojourn. It made me feel more alive than I have felt in a very long time.

    I share this because the road to recovery is sad and long and perhaps some of you will also benefit from going away to a place with no spousal memories. I realized that life wasn't over for me just yet. Physically stressed on the high altitude hike I also realized that sometimes there are not a lot of "choices" in life as we are led to believe. The only choice I had was to walk back up the trail and I willed myself to do it at a slow rate with frequent stops. Alzheimer's is like that. There aren't a lot of choices. You just put one foot in front of the other until it is over. Perhaps learning that with Alzheimer's kept me focused and not panicked. I don't know and don't want to read too much into it.

    But I do want to encourage other widows and widowers to get out of their grieving (comfort) zone. It can help reset the mind on what is good and reasonable and fun (all things that we lose sight of during caregiving).
    Great post, Marsha.
    • CommentAuthorAliM
    • CommentTimeFeb 23rd 2017
    marche, I really feel encouraged by your post. I am just past 3 months since my DH passed. Having spent only 6 nights away from home in the last 7 years, you have given me good vibes that I might just enjoy going to the beach, or somewhere, this summer. Those 6 nights away were spent in the hospital with some kind of serious bacterial pneumonia, so definitely not fun. Being the independent old cuss that I am, I ended up in the hospital after DD found me lying in the floor seriously dehydrated. That was a case of a caregiver (me) not taking care of myself. Thanks for your post and I am glad that you enjoyed your trip.
    • CommentAuthorWolf
    • CommentTimeFeb 24th 2017 edited
    Being in my third year down this road, things keep changing.

    For example I've been noticing that my cats are playing more. They've been playing with each other more too. They sniff each other once in a while and give the other one an affectionate nudge. They disagree more too and once in a while have a spat. They both 'talk' more. They both seek more affection from me than they have before.

    I wondered about this and I believe it may be another barometer that things truly are changing. I don't believe the cats have altered their personalities. I do believe i have altered mine. I'm the thing that changed this last year and two. I have more ability and desire to give affection. I focus on them more because I'm not as stunned anymore. I'm more tolerant of noise now and quicker to understand what that noise means. I've offered more latitude in their behaviour by not responding to sounds as though they're likely threats. I talk to them more. I pat them more. I'm paying enough attention where instead of realizing one was skinny and one was too big, I've managed them both to a good weight.

    The cats aren't doing the changing - they're responding to the changes in me.

    That describes my approach as well as any other. I see myself as my own pet owner. How I treat myself is going to be a reflection of me as well as create the reality I think I see. I believe both the strangest and the most successful thing I've done is become my own genuine friend. That's not how I set out. I set out by being fully sick and tired of both the moaning and the complaining going on inside. I usually like sitting in the balance but I was completely fed up with me in my life and became the drill sargent from beyond imagination. I grabbed my own throat in a vice grip and refused to let go until the critical voice inside learned the manners I was now insistent on.

    That's been life changing in ways that don't even involve Dianne, but affect my memory of her too. Many things cross my mind and don't stick but sometimes they do and those that did share the common thread that once I had arrived at a thought, I now believed that new thing. When those happen, they don't go away. Instead it's the other things that change to accommodate the new fact.

    My cats are quite pleased with the changes management is making. Their personalities are coming out more in the more nurturing environment. Perhaps one day management will learn to do that more too. After all, one of my cats was rescued from an abusive home. If she can do it, I can do it.
    March 2 was two and a half years, and then March 7 would have been his 92nd birthday. The whole first week of the month I was a little emotional and felt fragile, but now that I've gotten past those two dates, I am feeling good about how interesting and productive life has become. It is pretty much a new life--the "new normal" as I've heard others describe it. I am outside a lot--lots of fresh air and exercise--and the dog is good company in the apartment and outside. I'm chugging along gradually getting the apartment furnished and decorated..I try to let it "settle down" a little before adding new elements--don't want it to look too "nouveau." And I'm getting together with friends a couple times a month for lunch, or going down to Manhattan. It's great to be back in my church...and there are just lots of nice moments--like running into an old acquaintance in the grocery store parking lot, and just standing there catching up for awhile...and ending up with a big hug. It's nice to socialize with all the apartment neighbors, too. It seems like there aren't enough hours in the day--I sleep like a top, jump out of bed at 6:30 am or so, and feel happy for all the things I have to look forward to. Lots of music and writing--I feel like for the first time in a long time...perhaps the first time ever...that I am living my life exactly the way I want, and I have to say that it feels good. Even just watching TV or DVDs in the evening is pleasant when I can watch whatever I want, with total control of the remote. I've honestly never been able to do that before. When you're caregiving all the time--whether Alzheimers or just taking care of a family-- it's all about the person/people you're taking care of...but when you're by yourself, you can make it all about yourself. Wahoo!
    • CommentAuthormyrtle*
    • CommentTimeMar 10th 2017 edited
    Well, here I am, at last. I have not cried since my husband died, although I did cry once before he died, during the period when he was struggling so much. I assume the dam will break one of these days. My strongest reaction has been exhaustion. When I brought the cards and guest book and other stuff home from the funeral parlor, there was an 8x10 picture of my husband laughing while he was shoveling snow in a blizzard. (That was his idea of a good time.) It was originally a snapshot; I had it enlarged to display at the funeral. So yesterday I hung it on a wall over a low bookcase and put a flower arrangement under it, making a little shrine. That is very unlike me but I am getting some comfort from it. Sometimes when I walk by, I smile a little and blow him a kiss. Other than that, I am just hanging around and sleeping a lot.
    Myrtle, I've got a little shrine like that too, and give Frances a wink and blown kiss every time I pass by. I think it helps. They're not really gone as long as we continue to remember and love them.
    Myrtle, I think "just hanging around and sleeping a lot" is exactly what you need to do right now.
    • CommentTimeMar 12th 2017
    You've been in my thoughts and prayers. I think nature is helping you regain your strength again. Go with the flow and know that we all care.
    • CommentAuthormyrtle*
    • CommentTimeMar 22nd 2017 edited
    Still here. Not doing much. Last week I went to a neighbor's house for supper and with a friend to a bulb show at a local college but mostly I have been in a state described by Elizabeth shortly after her husband died, taking all day just to get dressed and going. And it's getting worse, not better. On Monday, I finally got dressed at about 3:00 p.m. but could not force myself to go out. Yesterday, I finally forced myself to leave the house in the late afternoon. Went to an upscale country market where I had seen mini-pots of spring bulbs. I planned to buy them as thank-you gifts for the staff in the veterans' home. I also envisioned sitting by the window and having a cup of tea and then picking up some fresh veggies and maybe a to-go dinner for myself at their deli. But the person who handles the flowers had already gone home so instead of the tea, veggies, and dinner, I had a melt-down. This morning I ordered the potted bulbs by phone.

    If I could describe myself now, I would say that I feel more free in that an unbelievably heavy burden has been lifted. But I also feel that I have been badly beaten up. It is not only the death of my husband. I also feel traumatized by the manner of his death -- where did I get the idea that Hospice would ensure "death with dignity"? -- and looking back on all these years, I realize what a nightmare this whole experience was for me. As with many things, I talked a good line, made a lot of jokes, and tried to put a good face on it, but the truth is that it was very harmful to me both physically and psychologically and I don't think most of this damage can be undone.

    P.S. I just remembered something else I wanted to say. My husband's remains were buried in my family's plot, where there is a large stone with my mother and father's names and space for other names. Last weekend, my sister called and offered to help me with arranging for an inscription on the headstone. I was taken aback because I had completely forgotten about the gravestone, the inscription, and even the cemetery itself. It was as though I thought he had disappeared.
    Myrtle, you are absolutely right that it is physically and psychologically damaging and harmful. Just take the time it takes, get the rest you need, be as mindless as you need to be--spend hours on the computer, or lying on the couch with a paperback and the do not have to Do anything. Your physical and emotional strength is going into coping with the trauma you have been enduring. This is necessary and it is to be expected. And don't let anybody tell you that it isn't.

    This is going to take a while. I know you've been on the boards long enough to have listened to me, and to Wolf, and to so many others. And I know it has not prepared you, not one bit, because it is impossible to be prepared, even if you think you are. I'm not entirely sure about whether or not the damage can be undone. I think that's an inaccurate way to look at it. It isn't really the point. It isn't so much that you can undo the damage...but what happens over the months and years is that you re-build and branch out it new directions. I can honestly say that I have undergone a sea change, and I am not the same person--not even close--as I was before the Alzheimer years. It's like being on a new planet...but I like this new planet. It's different, but nice. And when I think back to the old days, it is with a happy glow. Alzheimers tried hard to win, but it did not win. The love you and Paul had and have for each other is going to get you through this, and it will never, never end. Alzheimers ends, but love is timeless...and eventually brings such joy.
    • CommentAuthorcassie*
    • CommentTimeMar 22nd 2017 edited
    • CommentAuthorBev*
    • CommentTimeMar 23rd 2017
    Myrtle, so much of what you said is so like me it's scary. I haven't made a shrine but I walk around in his bathrobe. It comforts me. I haven't yet called the cemetery to get his gravestone inscribed. I don't know why. It's important but I keep forgetting about it!

    I seemed fine the first month as well, but I'm really feeling it now. My kids want me to go to visit a friend in Arizona and at first I said I would but as the time comes closer I don't want to. I can't explain why, I just don't. I know they want me but the thought of going far away, packing, airports is overwhelming.

    I'm only barely two months out from his death; I want to stay here.
    • CommentAuthormyrtle*
    • CommentTimeMar 23rd 2017
    Bev, Do what you think is best. As for me, although I'd love to be somewhere warm, like Arizona, right now I'm not going anywhere. I've been abruptly torn from the life I've had all these years (as miserable as it was) and it's going to take me a while to get my feet on the ground in this new life. So I won't be venturing far.
    • CommentAuthorAliM
    • CommentTimeMar 23rd 2017
    Bev and myrtle it has been just over four months for me and I finally ordered the marker about two weeks ago. Still waiting for it to placed. DD kept kindly telling me that she would go with me when I was ready. I finally realized that she was " Daddy's little girl" and wanted it done. I did go alone. I assured her and DS that I would not interfere with the future planning of mine. Just love family pressure. In the last couple of weeks I have begun to realize that the birds do still sing and flowers still bloom, so hold on and hopefully brighter days will soon emerge in your lives. We are not just waking up from a bad dream we are waking up from years long nightmares. Peace and comfort to both of you.
    • CommentAuthorCO2*
    • CommentTimeMar 23rd 2017
    My dear Myrtle, the previous posts have said it so well. Hospice told me the first few months just eat, sleep, and talk. That is pretty much it. This grief thing is really a whole process unto itself. After so many agonizing years of care taking we are finally faced with caring for,ourselves. Just know there is hope. The healing will happen on its own timetable one day at a time. It is almost 2 years for me and although I have made progress it is slow. Some days are better than others but I think that is true for all,of us. As for the grave stone, it took me 4 months but I know someone who it took 3 years. God bless my friend.
    It has been six months for me and today was my husband's birthday and I just feel numb. . . I still don't have a grave stone. The choices are overwhelming and I'm not sure what fits us yet. I have never even paid much attention to grave stones so I don't have a feeling for what aesthetics I like. Besides, it is so permanent and it isn't like I can change it once one is decided on. I think this is inertia. It is definitely one more decision to make for which I have no appetite.

    As for the grief malaise it is two steps forward and one step backwards. A flurry of activity is followed by days of dragging around. If it weren't for deadlines (like taxes) nothing would get done. And as for cleaning out the house so I can move. . . where is that fairy godmother when you need her? Oh yeah, she was just one of the many who vanished when AD reared its ugly head.
    Talk about inertia, Its been 2 years and 8 months today and I haven't even decided where to bury him. He is still in a box on my mantle. I'm happiest when I am out and going. I find that being home in the bummer. I don't want to do house work and yard work is even worse.. I used to love the yard work. That's why I spend as much time as I can traveling . I guess its a way to escape it all.
    Well, I've been in NY for three months, and have not been down to the cemetery--30 or 40 minutes away, depending on traffic. But you know, I feel so close to him here, where we lived for all those years. Church especially--wow--I can feel him right there beside me in the pew, and even sometimes walking down the sidewalk to the car. Sometimes it brings a smile, and sometimes a tear--not really a sad tear, but a poignant one. Hard to explain. It's nice to have him right there nearby. (Yeah, I know--whoo whoo whoo-whoo-whoo--The Twilight Zone.)

    Anyway, I didn't have to do the headstone thing, because we are/will be in the wall of a mausoleum. It is very nice--kind of like being in a dresser drawer, but in an outer, sheltered wall. With Hudson River views! His name and dates are on the wall, and my name and date of birth is already on it--date of death, not yet, of course. We don't want to rush anything--ha,ha.
    • CommentAuthorFiona68
    • CommentTimeMar 24th 2017
    Elizabeth, I strongly believe that our loved ones can stay with us after their death. I've had several people whose husbands have died this past year tell me that they feel their spirits with them, loving and comforting them. I'm happy you feel the comfort of his presence. I only hope that when my DH dies, he will visit me once in a while.
    • CommentAuthorWolf
    • CommentTimeMar 26th 2017

    Maybe your forgetting about the gravestone is part of giving yourself a bit of focus on your own life right now. The gravestone may be important as you said, but that doesn't make it urgent.

    Call your friend in Arizona and explain you really want to but it turns out this is too soon. Could you have a rain check please?

    Your kids are trying to help which is good and that made you see what you actually want here right now which is good. When you call, you'll see they understand and will keep your seat open for you. Explain to the kids that you're glad they suggested it and that you will be going sometime later. Authorizing ourselves to be is part of this.


    Travelling is not escape. Travelling is travelling. In exactly the same way that putting your feet up for a bit isn't sloth. It's putting your feet up.

    Sometimes we use a phrase incidentally, and sometimes using a phrase helps us see how we're looking at things. You've often mentioned how much travelling means to you. You've earned the right to have that Mary.
    Ditto to everything Wolf said upthread.

    I think things like getting the headstone or where to put the ashes just take the time they take. There aren't any rules as far as I know, and I think when it feels right, those things will be taken care of. Or not. I mean, it isn't mandatory, is it? I would think you just go with the flow and whenever the planets come into alignment, you just do what your heart and your karma tells you to do.

    A good friend of mine still has her father's ashes from 1991 (mother died in 2012) in her closet. She was saying that the last time she cleaned out the closet, she didn't see them, and hopes they didn't get sent to the Goodwill by mistake. Good Lord. Now that is a little beyond the pale.

    In terms of a big cross-country trip, I agree that it sounds exhausting at a time like this. Anyone would understand the sentence, "It's too soon." It sure would be for me. And don't forget Mary75's all-purpose, oh-so-useful line: "I'm just not up to it." It works for all kinds of things, and nobody can argue with you.

    In terms of the cruises, hey, Mary in PA, why shouldn't you have the right to live the way you want and do what you want to do? If anybody has earned it, you have. Life is too short to follow anybody else's agenda, and as a friend of mine used to advise us, "Don't should on yourself." If your "thing" is cruises, then God bless you, and you just go and take those trips.
    • CommentAuthormyrtle*
    • CommentTimeMar 27th 2017 edited
    In my case, the reference to the grave marker was not meant to convey neglect of duty -- I don't really care about it -- but to show what a space cadet I have become. Not only did I forget that the cemetery existed, the other day I drove the wrong way on the Interstate for 20 miles before I realized I had made a complete circle, ending up where I began. And yesterday, I put my food in the cat's dish and the cat's food on my plate. (Luckily, I caught that one in time.)

    P.S. I'm posting an update on the thread called "Trauma" that I brought to the top of the list, right below the stickies.
    Myrtle, just rest and try not to put any demands on yourself. None. Do the very least you can possibly get away has not even been a month for you, and you have had a very hard time. Of course you are going to be spacey--I think most of us are or were, when we were under similar circumstances. All of your energy is going toward grief and have just been through a huge shock...can't even think of a word bad enough...cataclysm, tsunami, earthquake, asteroid strike--be gentle with yourself, and just know that this is going to take a while. We are all here for you.
    • CommentAuthorBev*
    • CommentTimeMar 28th 2017
    You guys are all so terrific! I sit here next to my daughter's dog while dog sitting, which really makes me feel good, and it's difficult to,type because her big head is usually in my lap, and read this thread which gives me permission to do what I feel I must do.

    I know my family and friends mean well, they just want what THEY think is best for me, that I would feel better if I go away for awhile. I did convince them I would feel better just grieving the way I feel is right for me, that it is Just a short time since his death. Not only have I had to go through such a horrible time these past few months, let alone the past years, but I have been dealing with a problem with my knee, having torn ligaments and muscle sprains and inflammation since a month before his funeral. I am trying. I went out to dinner with my granddaughter, had lunch a couple of times with friends, and yesterday I went shopping and splurged on some new summer clothing. I'm just going to take a weekend or two away to a familiar place, spend some time alone in a place where he and I used to go, and just enjoy the birds, the flowers, trees, and being lazy. I've been doing that here at my daughter's house, alone here with the dog, eating, reading and watching TV. This has been good and it's what I want to do in the next few months. My friend does understand, the invitation is always open. I'll go when I feel ready. In the meantime, I'm so grateful for your support.
    • CommentAuthormyrtle*
    • CommentTimeApr 2nd 2017
    It has been one month since my husband died. I miss him very much. I don't cry but my emotions are very close to the surface. I sleep a lot. I am just beginning to realize the severity of the stress I was experiencing all these years. The release from that stress is stronger than any other feeling. My friends have invited me to join them occasionally and I always say yes but except for that I rarely leave the house even to buy groceries. I'm giving myself a little time before I force myself to go out.

    Bev and Marilyn, how are you doing?
    Myrtle, You sound as if you exactly where you need to be at this point. I too did not cry a lot after the fact. I did a lot of my crying earlier when he was placed. As time goes on and your body begins to heal, you will indeed realize even more the severity of the stress that was put upon you. When I was going through it, I just did what I had to and did not think at all about the level of stress. You are blessed you have friends to invite you out. I have a few friends but not many and still feel like a 5th wheel even with my own family. I am focusing on making friends with single folks as going out with couples is not comfortable for me. I would encourage you to not force yourself to go out at this time. We do that because we think it is what will help us and because we want to be nice when people ask us out The truth that I have learned is that time alone in a quiet house is what I needed the most. Your desire to socialize will return as time goes on but you are only a month out. People who survive this have gone through a war so to speak. The emotional and physical toll is difficult to even measure. God bless
    • CommentAuthorBev*
    • CommentTimeApr 3rd 2017
    Myrtle, I'm doing well, really, I think. I'm frankly kind of surprised that I do, although, like you, I'd rather stay close to home. I went grocery shopping yesterday and I could hardly get out of bed today because of all that I did yesterday. I worry that I don't seem to have much energy. I have his picture on my kitchen counter, a picture of him from four years ago when we were on a family vacation, which I had to coerce him to go on. It's a picture of him with my daughter's dog , who loved him so much. She couldn't stay away from him. Of course, it helped that he always had a treat In his pocket.

    I think of him and when I do the tears are close to the surface, as you said. I miss him, but I think the 2-1/2 years he had been in the nursing home helped me get used to him being gone. And, he really was a different man, not truly the man I married.
    • CommentAuthorWolf
    • CommentTimeApr 15th 2017
    One of the truths I'm experiencing is that I feel lonliness more intensely. I was annoyed that it felt like depression had been replaced by loneliness. It took me time to believe instead that the general lack of depression allowed my feelings to be more accessible and nuanced, where loneliness is a feeling I've had for a long time because it's a real fact in my life. I have less heavy weather and more feelings to experience loneliness with.

    During the same time I've noticed my anxiety levels creeping down. I had my first and hopefully only anxiety attack when my wife was in palliative care just before she passed. I started noticing how much anxiety I felt about almost everything. If someone was coming over I would feel very anxious that my house was in a state so I went into a state racing around quickly doing this and that and then likely going to the window ten times to see if they were here yet and why weren't they here yet?

    When I got my passport and signed for it and my license sticker and signed for it and my health card and signed for it - each time I had to try and stop being so anxious and two of those times I needed a second form because my hand was almost out of control. I remember that with signing cheques/checks at times too.

    If I was going somewhere I would get worked up about it and if anything went wrong I would get anxious about it. Going there. Being in the right line. Filling out the forms. Making sure I understood what I was being told. It all felt oppressive and challenging.

    Where did all that go? When Dianne was in the NH, I would get dressed, put on my shoes, get my wallet and keys, and then sit there on the step in a daze. I had to remind myself what I was doing, that I had money, where I was going and while that didn't happen every time, it happened regularly whether I was getting groceries, or going to visit, or going to a friend.

    As the years became more oppressive, my world got smaller. I stopped noticing whole rooms in the house and became almost a single focus on what I was doing right now. Things that tried to intrude on that were threats.

    Last year I was shocked to hear that a year had gone around and I was due for an eye exam again. That's what triggered a cascade of issues when my health card was refused because I was listed as deceased. This year I understand it's in April and we're at the 15th and I haven't heard from them yet. That's quite different.

    My entire world seems different because I have changed enough about what happened to us and what that did to me and how I feel about this new life, that the depression and anxiety and fear and grief and God knows what else have receded beyond dominance. They have been replaced by a new dominance which is actually an old dominance.

    I feel dominated by the experience of being me now and I feel comfortable familiarity with what goes on inside me. I don't know what things will happen next but I'm not worried about what I don't know. I'll handle things as I do when they come up.

    Going out the door these days is just going out to do something where I know all along what it's about and anxiety about it doesn't cross my mind. I don't need to deny or alter what was. It's enough to win and so I feel empathy for myself and that step I sat on and how it was. That makes sense to me because how am I ever going to enjoy or appreciate anything if I erase the bad things that were?

    Changing is mandatory. When almost our entire life has jumped to something completely different in such strained and complicated circumstances as ours and there is no chance to remain as we were - then change within ourselves is the only path to reclaiming a life for ourselves.

    Each person needs a certain amount of time for each thing. Death, disease, guilt, depression, alien world are examples of things. That's the first principle. Allow time where the best thing we can ever do is guess at these things. When in doubt, allow more time. (In other words stop worrying about everything and get through the day)
    • CommentAuthorWolf
    • CommentTimeApr 15th 2017

    Our experiences are right there with the worst experiences in life more because of the way it all happened than that they died. One of the important things to realize is that when they die, they are no longer being subjected to the ravages of the disease and you are no longer subjected to new stresses and shocks being added. They are released from it and so are you. This horrible period right after is where you can start catching up - just as soon as it all gradually becomes less overwhelming.

    Dianne paid the ultimate price but she doesn't have to face this hard road of changing into an unwanted world. She doesn't have to face getting old alone. She doesn't have to reinvent herself or struggle just to reach something that feels like neutral ground. She would want me to get there though, and if she didn't then her opinion wouldn't matter anyway.

    A person who went through what we did is entitled to have the life after they never asked for and have no choice in regardless. Any thoughts around entitlement is a direct insight into the damage the disease did. Any thoughts about personal guilt are a direct insight into the damage the disease did. I left Dianne moaning in a heap of tangled clothes screaming that I'd had it. I stormed away a number of times insanely reacting like a human being pushed again and again past human breaking point. I don't excuse myself - I only show the 427 points deducted and the 15,000 points awarded. The real point is that we did so much that the times we screwed up just can't be important in comparison.

    I can also answer the question did we do enough? Nothing was enough. There is no such condition to be met. We don't know what would have happened if we'd made different decisions except that ultimately it wouldn't have changed that much.

    Afterwards is the story of how the surviving half gets back on dry land once the storms aren't overwhelming anymore. That's the only good story line in this tale.
    • CommentAuthorCO2*
    • CommentTimeApr 15th 2017
    Wolf, your comments are very insightful. We are all faced with dealing more intensely with the inner journey after they pass. We were all too busy just trying to deal with day to day stuff. You are right that afterwards the anxiety does gradually lessen. After he passed I had so many fears about everything-- that normally would not be big deals. I still have some but they have greatly lessened. There is a part of me that would like to go back to the way it used to be but I know that is not possible because having survived this disease we are forever changed. I still need to learn how to do more social things by myself and not wait for people to invite me. I am realizing that will probably not happen. It is coming up 2 yearrs since he passed. I am not dreading the anniversary like I did last year and realize whatever I feel or whatever happens it is all good. This year I am having my children over for brunch in the morning. I have not done this for 3 years so for me this is a big deal and a step towards connecting more with my kids. I have found my relationship with my kids has changed a lot since his passing. I have all sons so they spend more time with the in laws which is okay with me as I like my private time. Boys generally are closer to their fathers anyway. Each day takes me closer to the new life that I am starting to create but is still a work in progress
    • CommentAuthorWolf
    • CommentTimeApr 17th 2017
    CO2, I can relate to what you said. My neighbor dropped something off a few days ago and said it smelled good in my house (it was after dinner), so I invited him and his friend over for dinner. He refused and said they had long invited me and so we must do that first. I apologized for my tin ear and agreed. Since then it's been in the windmills of my mind what I would serve which is another thing that is both new again and completely familiar. The interest and willingness are new, playing around with what I'll make is familiar and very welcome back.

    We are forever changed, I agree, but much of my experience recently are like familiarities returning. I know that's not what's happening. The opportunities have been around me for a long time but only recently have enough parts happened for me to want to notice more.


    Part of what happened is that old antagonisms have evolved to seeming meaningless. Not all, but most. I can't invest in them anymore than I can invest seriously in those relationships now. What I can do is understand that just like with neighbors, relationships aren't endlessly serious - there are limits which I have rare knowledge of, painfully acquired.

    Part is an evolving peace with Dianne and part is the time I've had both from all those events and in the world I now have. Part is stress reduction from intolerable levels. Part is the return of personality nuances that were under siege the longest like confidence, willingness, and optimism.

    Despite all that good sounding stuff, I did not change so much that I became an interesting, self- entertained, go getter. I'm just me again somewhat changed, and if I want more I have to get outside my comfort zone, and work and grow my way to having that.

    Ultimately I'm coming around to believing that going through complicated grief (forget looking up standard grief - look up complicated grief) while also going through the aftermath of caregiving our loved one through a long term, fatal illness takes 3-5 years to catch up with and to substantially feel whole again.

    I'm not convinced it matters how we go through the aftermath (the period after their death before you notice some things are improving). I am also convinced it does matter how we go through our afterwards (the period where we're less overwhelmed than struggling to try and find more of ourselves). I believe it's in that period that being able to change or solve or accept specific things helps build towards a feeling of neutrality (not good but not bad).

    What comes after 'afterwards' is what I might call the 'settler' period. You're moving more into your life than you are healing from what seem more like old wounds now. It's in this period, where we feel less burdened or held back, that we are faced with our own limits of what we have become so far in our lives.

    I am in the settler period and I believe Elizabeth is too although she can speak for herself. Asking questions and looking for answers how to settle more into our life. Not all the questions answered but not unduly burdened either.

    I don't have the life I want which makes sense because I'm just starting to live the reality that it's up to me and I can figure it out on a daily basis. That may not sound that optimistic but I can promise that it is.

    There is something symmetrical in all this. In the years we sacrificed in what is easily one of the most important things any soul can do, it all got worse. In these years it's the opposite. At least, that's true for most.

    And what is the last period after the settler period called? It's called life. You don't feel like you're settling in because you see yourself as this and you see time as now. Memories can trigger emotions but that's part of our life and that's how we see that too.

    Collect things of meaning to you as you notice them. Look for them. Beliefs, memories, people, objects, nature, and wants. Keep them close and keep an eye on them. Those that are true come through all the waves intact with you. When the abyss yawns, deny that there is nothing with those things.

    Don't try and solve too soon. No thing can bear the weight of the needs we try to land on that thing. Don't hate or despair when it collapses. Understand that grief is the realization of profound collapses you need to go through and that empathy felt for a person going through that is an appropriate response - even for yourself. In fact, empathy for the truth that this is all quite hard has helped me throughout. Good luck.
    • CommentAuthormyrtle*
    • CommentTimeApr 17th 2017
    My predominant feeling is what you aptly call, " stress reduction from intolerable levels." Only a month and a half after my husband's death, I can feel the stress just melting away.

    I do not have "complicated grief," which I looked up just to make sure I got it right. In fact, I am wondering if I have grief at all.

    What I do have, though (in addition to the stress reduction), is a continuing sense of horror about the suffering my husband endured while dying. This has lessened somewhat because I am able to put it out of my mind but when it does come to mind, I get just as upset about it as I was before. I am wondering if my strong feelings about this are preventing me from feeling normal grief.
    • CommentTimeApr 17th 2017
    Or is part of grief?
    Myrtle, was he "with it" while he was Cheyne-Stoking all those hours? My father Cheyne-Stoked for a long time before he died (brain tumor), but he was comatose and heavily medicated--there was no sense that he was suffering, even though he was going through respiratory changes. I was the one at the bedside, so was very aware of how he was doing.
    • CommentAuthormyrtle*
    • CommentTimeApr 17th 2017
    It could be but, if so, it is not grief over his loss. It is grief over his suffering and over the fact that I was not able to keep him comfortable during his death. I was traumatized not only by his suffering but also by the fact that I was completely unprepared for it. I had accepted that he was going to die but had not even considered that he would have such a horrible death. The booklet I got from hospice made it sound like the drugs they gave would allay any suffering and their description of possible breathing issues gave the false impression that the Cheney-Stokes respiration was something that might occur just before death (not that it would occur days before and keep on going). I realize now that I am not the only one who was surprised by this. When I tell people about it, they say, "I thought you had hospice," as though hospice could prevent this, which I guess was my belief, too. (Not only did we have hospice, but we had nurses who specialized in end-of-life care.) Anyhow, this is why is think that my horror/grief/trauma about the manner of his death is preventing me from dealing with the grief over his loss.
    • CommentAuthormyrtle*
    • CommentTimeApr 17th 2017 edited
    Elizabeth, He was not comatose although it was hard to tell how alert he was. His eyes were half-closed but when someone got right in his face he would open them and smile a little. When I put my face in front of his, he would "pucker up." He did not seem to be in pain but he was consumed by the breathing. They gave him morphine, Ativan, and something for congestion. (That last drug worked and the nurses were pleased.) They seemed concerned and kept calling someone (hospice, maybe) about giving him more or different drugs. One nurse said he had never seen such long periods of apnea. Maybe the strength of my reaction is the result of my own inexperience with death and medical matters. However, in no way could anyone see this as "keeping him comfortable." It was a lousy way to die.

    This is the way I remember him now. Not as the witty, kind man he once was or even as the sweet, silly, demented man he was just recently but as a man whose struggle to breathe consumed him for days. I know it is not healthy for me to dwell on this. He is dead and there are a lot of living people suffering in the world right now. But my goal for ten years was to make sure he felt secure and comfortable and I could not do that in the end.
    • CommentTimeApr 17th 2017 edited
    My sense of failure to prevent my husband's suffering was overwhelming too. I felt that I had tried so hard and for so long, that it surely should have made a difference. But it's not a battle that can be won. Nothing, nothing, would have made a difference. But we tried, and that is a noble thing to have done. We can take some solace in that.
    • CommentAuthorcassie*
    • CommentTimeApr 17th 2017
    Myrtle, so sad to read of your distress but it is very understandable. If the breathing was causing your husband the same pain and trauma that it was you, I don't think that he would have been able to smile and pucker up. I saw my husband dying and when he breathed like that the pain and discomfort was written on his face until the drugs were quickly increased. Your husband didn't think you failed him at the end for he was looking at you when he was dying and knew that you were still "keeping guard." Myrtle, don't let this horror overwhelm you and erase the wonderful man that he always was from your memories. All the best, cassie
    Ps. And please take on board, Marys' wise words.
    • CommentAuthormyrtle*
    • CommentTimeApr 17th 2017
    I don't think he was in pain but he was clearly in discomfort, exhausted and struggling. I cannot deny what I saw with my own eyes or minimize it to make myself feel better. I guess I will just have to put it out of my mind. And remember that I was there for him and did what I could.
    • CommentAuthorcassie*
    • CommentTimeApr 17th 2017
    Myrtle, I wasn't trying to minimise your husbands' suffering nor your distress.
    Some horrors we just have to live with and hopefully you will be able to do this in time.
    • CommentAuthormyrtle*
    • CommentTimeApr 17th 2017
    I know. This is all new territory for me. You are my dear friend. Will clear out the shed soon and we will visit there.
    Myrtle, I think it is just going to take time. You have been through such rough experiences, and it is all fresh in your memory--very traumatic--probably some of the most traumatic hours and days you will ever go through in your life. But you were there--you were right there for him. You will always have the comfort of knowing that you stuck it out and hung in there. I agree with those above that it was a noble thing to do and that he had the comfort of knowing you were keeping guard for him and with him.
    • CommentAuthorWolf
    • CommentTimeApr 19th 2017 edited
    That must have stung (on the other thread). It reminds me again that these are very serious things where less than this has sent people careening off the road. I can open the newspaper almost any day and find those stories where events in people's lives caused them to materially change.

    Suddenly a person can't hear the concern and support. They pick something out of context to fight against. Their tone and manner sound like it's a different person. We rarely notice when we wander; it's others that do.

    Don't forget 'when you come here as a caregiver you're not getting help - you're doing for others; and when you come here as a widow, then you're just visiting'. How twisted is that?
    It is interesting to observe the group response to various personalities when we are all just words on paper. There is no "reading of the facies" or body language and so we depend exclusively on particular and idiosyncratic self-expression through writing. The underlying truth here is that we are or have endured a very sad and painful experience.

    Many good-hearted, understanding people post on a thread borne of desperation, throwing out the knotted rope, so to speak. Over time there are patterns that emerge: stoicism, desperation, neediness, an amazing survivorship mode, misunderstanding, repetition, amazing insight, not so amazing insight. . .

    It is a little sad when so much effort has been extended and offered during duress and then later it is dismissed. It was predictable, though, and should be no surprise. Because we are hopeful creatures and want the best outcome, the predictable outcome IS a bucket of cold water surprise.

    This is what it means "doing business as a human being." No more, no less.

    What I take away from this website, besides the very useful information, is a cross-section of the human experience. AD isolates us so, and finding a community for support and understanding has saved many of us from succumbing to the disease that claimed/is claiming our spouse. Extending words of encouragement and comfort takes a great effort because we have so little reserve. So a rebuff, of sorts, seems to sting more because our circle of relationships has shrunk. But here is the thing: in the process we have grown turtle shells of protection, slayed dragons with swords in both hands, fought bureaucracy, and found untapped strength to deal with things we didn't think we could. It broke us apart and we, on this thread, are gluing ourselves back together. So, a little sting gets a knowing nod to predictability, a twinge of disappointment (because insight is a valuable tool and it makes me sad to see it lacking) and this turtle trudges off to see what lies over the hill.
    • CommentAuthorWolf
    • CommentTimeApr 20th 2017
    So very true and so very well put. By insight being a valuable tool, I presume you mean experience being gained and put to use.

    There is another element I think. Should I speak up? Will it help? I don't know that. Is it temporary? I don't know that. Would it cause conflict where that's the last thing anyone needs here? Yes. So I watch instead. Yet that must have stung at a very vulnerable time. So I posted about it here.

    You really do have a lovely command of the skill of articulation. Your post helped me.
    • CommentAuthormyrtle*
    • CommentTimeApr 20th 2017 edited

    After taking a break, I just realized I completely misinterpreted something I read here. To quote Emily Litella (Gilda Radner), "Never mind."
    • CommentAuthorcassie*
    • CommentTimeApr 20th 2017 edited