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    • CommentAuthorWolf
    • CommentTimeMay 17th 2015 edited
    First principles are called that because that's where things start. I'm not feeling good and I'm lost in my life. I could go zooming off into space on a flying rug of emotions and I do - often - but, that's not terribly useful.

    Know thyself said Jesus Christ and I agree with him. The reason is that I'm here, this is my life, I'm using up the space, and the clock is always ticking. I don't think Jesus meant that as pressure. I think he was saying it's a good idea to know ourselves because, lets face it, life is very personal and in your face. You can't take responsibility blindfolded.

    I lost myself in Alzheimer's. I was swept away and overcome for a while. Not so that you would notice when I went to the nursing home, not even so that my closest friends were too concerned. I wasn't eating the furniture or tearing my hair out. I was however oblivious to what month it was and I truly was out there for some time.

    I take this seriously. Which is to say I have no idea what I'm doing. That's the truth but it's always been the truth and nothing good ever came from letting that slow me down.

    Who wishes me harm? No one. Why did they abandon me? Because normal people hate dementia and are generally terrible at being supportive whether you live in Atlanta or Zurich. What does that mean? Harbouring resentment afterwards is the evidence of the disease damage within you. Why? Their behaviour has absolutely nothing to do with you. We can interchange any of you with anyone else and it's exactly the same. What do I do with the outrage then? Yes, good question. Well I don't feel resentment. I just feel like I've been run over. No. That's just a different colour of the same thing. It's damage. It's unresolvable yet holds you. It's over yet it holds you. It's collateral damage and it's in you. They were trolls. Now open the frigging cell and walk out and fight to do that. It won't be the same or feel the same but you have bigger problems right now and our need to shut someone down or shut them out or more likely to let the truth rip in their face is all real but the only thing that outrage will ever do I can promise you is either blow things up or fester within you.

    You are the only person who has not left this building. There's no one here.

    They don't go away easily although some have truly gone and are empty nothings. Other's keep popping back up with seemingly endless supply of outrage/resentment/depression. The damage is real and so are my needs to mitigate that. I'm not really that interested in always hearing about the effects. I need strategies and tactics that help me let go of this damage to my outlook.

    Ultimately why doesn't matter. I learn this or I carry it uselessly. Anything inbetween gets a lot of part marks.

    I have to let go of what Alzheimer's did or I will remain within what is just a disease and is still doing all this damage.
    • CommentAuthorWolf
    • CommentTimeMay 17th 2015 edited
    To what do I belong? I belong to the human race. I belong to Canada. I belong as a male. I belong as an elder. I belong to my tribe (what a motely crew that is). I belong in my own body. I belong to now. I belong to me. I belong in the space I live in. I belong in my bed. I belong in my clothes. My cats belong to me. My plants would prefer to be adopted by someone else but belong to me. I belong to no club that would have me as a member except this one. I belong to the widowers thread. I belong to the single life. I belong to the club of lonely people. I belong to the fifties and the sixties and the seventies. I belong to the club that can speak two languages (few translate how I would). I belong to the group that doesn't know anything about plumbing or wiring. I belong to the group of artist wannabees. I belong to the group from Missouri (show me). I belong on this earth. I belong near a cup of coffee. I belong to the irreverent not to the cynics. I belong to the club that believes life is funny. I belong to the club of people who knew Dianne really well. I belong to the club of people that loved her and miss her. I belong to the club of people who started a second life (wait...I'm getting ahead of myself).

    What do I want? I don't know. I've never known. I'm fine with that because I'll figure it out when I get there. In fact, I don't want it any other way. What do I want? I want to be. Next question.

    Where am I welcomed? To call? Quite a few places. To visit? Yes. My sister would welcome me. My best friend would. My other friend would welcome me too. Not to move in. But I think that makes me rich. Would someone open the door for me and let me in if I asked? Yes. Good.

    What happens when I get through all these questions? For one thing whenever anybody asks me if I've thought about all this my answer is yes sir I did and I'm ready to recieve my reward. There isn't one. Move on.

    Reminds me of a joke. Announcement heard on the PA system on a cruise ship: "Will the passenger who lost the rolex please form a line outside the purser's office". Do you know why that's funny? Go ahead. That's right. Because trolls are out there and the proof that neanderthals interbred with homo sapiens is my in laws. Take my in laws. Please.
    • CommentAuthorbqd*
    • CommentTimeMay 18th 2015
    "That evening I went for a walk.To walk for the sake of walking is something I seldom do. Inside my apartment I'd felt inexplicably anxious. I needed to confess my sin. I was once again having impure thoughts about saving the world. Or it was neither of these - I was afraid I was dreaming."
    "In any case, I needed to talk to someone, and I was alone.
    This is my habitual condition, by choice - or so I tell myself. Mere acquaintanceship leaves me unsatisfied, and few people are willing to accept the burdens and risks of friendship as I conceive of it".

    ISHMAEL by Daniel Quinn.

    The irony of reading this paragraph last night just after I had finished reading the posts about friendship in this thread was just too much for me not to share.
    • CommentAuthormyrtle*
    • CommentTimeMay 18th 2015 edited
    bqd, It’s true that acquaintanceship may not be as satisfying as friendship and that real friendship imposes burdens and risks. But I don’t know how a person can become a friend without first being an acquaintance. In relationships between adults, it's rare to go directly from stranger to friend. As Wolf said earlier, a salesman has to go through many “nos” before finding the “yes.”

    After hearing about the cliff jumper who died at Yosemite, I read a little about risk-taking. It turns out that men are generally more willing to take what are called recreational risks whereas women are more willing to take social risks. So women are more likely to risk social rejection in order to meet people. I previously wrote that I think having friends or close acquaintances is a matter of survival for single people. But now I'm wondering if that might only be true for single women, and not for single men, since men are probably not as limited as women in the places they can go and things they can do alone.

    Anyhow, this thread is about deeper issues, like knowing oneself fully. You don’t have to achieve that before you make new friends or acquaintances.
    • CommentTimeMay 18th 2015
    "What do I do with the outrage then? Yes, good question. Well I don't feel resentment. I just feel like I've been run over. No. That's just a different colour of the same thing. It's damage. It's unresolvable yet holds you. It's over yet it holds you. It's collateral damage and it's in you. They were trolls. Now open the frigging cell and walk out and fight to do that. It won't be the same or feel the same but you have bigger problems right now and our need to shut someone down or shut them out or more likely to let the truth rip in their face is all real but the only thing that outrage will ever do I can promise you is either blow things up or fester within you."

    Wolf, I believe it will heal over and leave a scar. I don't think scars are ugly, but signs of having lived fully and having fought successfully.
    • CommentAuthorbqd*
    • CommentTimeMay 18th 2015

    I totally agree that this thread is much deeper than whether one makes friends or not. I only posted what I did because if sounded just like Wolf's comment yesterday when he said that he hasn't made any new friends since 1975.

    I think too many people define themselves by their friendships, or the number of friendships they have. Just like people define themselves by their material possessions - they treat their friends and personal relationships like material goods that need to be counted and added up to some large number before "success" is achieved.

    To know oneself fully, one needs to know what one needs, in order to be reasonably happy. And here I go beyond the usual food, shelter, etc. For instance, some people need something bigger than themselves (higher power, Jehovah, Mohammed). Some people need to feel included. Some people need to take risks. Some people need to feel secure in everything they do and in every environment they are in.

    Dealing with this disease knocks us out of our personal comfort zone, even if it is as simple as asking for help when one is accustomed to being independent.

    The important thing is to figure out what those needs are and what you can do to achieve them. Once that step is taken, then one can start working on the "wants".

    And in my experience, risk, risk taking, and the type of risk one will take is not gender related but instead is related to the individuals attitudes and personality. And taking risk in one area of life does not necessarily mean that the individual will take risk in another area.
    This is a really good discussion about friends and friendships. My DH passed 2 weeks ago. The last 3 months were so horrific and he had to be moved 4 times which forced me to interact with 4 new sets of staff, interact with 3 different physicians, plus deal with Hospice which was yet another set of people. Right now I am actually enjoying the quiet and the fact that I can crawl into my cocoon and not come out until I am ready. I am by nature more introverted which made all the moves as described above all the more terrifying for me. I have not figured out what I intend to do now. All I know is I need to stay in my cocoon and heal before I can come out. Anyone that goes through this has endured a horrible emotional, physical and spiritual trauma and to regain one's footing needs intensive introspection and time. I have returned to daily journaling which seems to help and quiet prayer. One thing I have learned about friendships is that not all people are capable of a more intimate nonsexual friendship. Rejection is part of the game but I think that reframing these rejections makes it more manageable and also not taking these friendship rejections personal. I have a couple acquaintances who want to go to lunch with me. Neither one is going to be an intimate friend but I will go and just try to accept them as they are. I seldom see or talk to these people but that is okay. Neither one has been through what I have just gone through so I already know they will not really "get it" but I try to overlook that and accept it as it is. I feel as tho I have been let out of caregiver prison and now that I finally have freedom from it, it is rather terrifying. What to do now? I am just taking it very slow and one day at a time.
    • CommentAuthormyrtle*
    • CommentTimeMay 18th 2015 edited
    bqd, I did not mean to criticize or offend you when I said this thread was about deeper issues than making friends. When Wolf said he had not made a new friend in 40 years, I sprang into action and (consistent with my usual M.O.) doled out advice about the importance of friendships, how to make friends, what a great guy Wolf was, blah, blah, blah. Later I realized that it sounded as though I thought the discussion was about the more superficial subject of making friends. So just to show that I was not a complete dunce, when I responded to you I threw in the comment about what the thread was “really” about.

    I should not be posting on this thread, anyway. It’s really for people who are experiencing great grief at the same time as they are reassessing who they are and what they need and want. I’m not at that point yet and even when I am, I’m not sure I’ll have anything to contribute. But I’ll continue to read all of everyone’s comments with interest.
    • CommentAuthorWolf
    • CommentTimeMay 18th 2015
    Myrtle, you do belong here and you're not even close to offending anyone. Besides, I've got your back, remember? Notice that BQD is also explaining her thoughts more just as I did.

    It's like this on the positive side. We step forward into an idea and then the fact that most every other thing in our life is under seige, we doubt. So do I.
    • CommentAuthorWolf
    • CommentTimeMay 18th 2015 edited
    At it's worst, I didn't think about real life at all. In 2011 which was an insane year of Dianne never stopping and which ended with putting her into that home, I noticed it was summer twice. In 2012 everything was raw and it didn't cross my mind to go out and have a life. In 2013 things improved steadily from really bad to just bad. Last year I might have spent enough time wanting to improve and taking different steps that when Dianne passed, I only had a massive anxiety attack. My first. Now in 2015, I'm working hard to actually do things and engage much more.

    Throughout, the hardest thing is still to find a real balance in how I think and act. I think the hardest single part is not second guessing and third guessing everything, not changing my mind all the time, not worrying that I said something or that they won't like me anymore, not listening to the thoughts that are really defense - throw it away or disown it before it hurts me.

    My emotions were flayed raw by this and when they were ripped up and raw, the flaying just kept coming and coming. I can't tell easily how I feel in the moment because I'm all over the road. I can go from feeling gratitude that I'm invited somewhere to doubting that I should go to being upset they're upset that I didn't go when I haven't even decided yet (read bounced off the wall enough yet).

    What I'm searching for eventually is to fairly normally consider what I want to do and have access to those feelings in a way that work so that I can tell. I don't have that. Instead I bounce as I posted above even on this board that I'm being annoying and that I'm being ignored and that I'm liked and that I belong and that I don't belong.

    Are you a dementia spouse past or present? Then we belong.
    • CommentAuthorbqd*
    • CommentTimeMay 18th 2015

    I did not take you post as criticism, and if I had gotten out of bed and posted what I had read right after I had read it, so that it would have immediately followed the discussion on friendship, it would have all made more sense. I realized that when I posted this morning, but I couldn't back track, and I thought it was important enough to add to the thread. In the book I am reading, a man is being asked to reassess how he looks at the world, by stripping away his "truths" and looking at life from a completely different perspective, which I think is what Wolf is trying to do. Wolf is feeling his way in life without the truth of dementia hanging over it, and after spending so many years looking at life through the tinge of the dementia care giver, it takes a different perspective to look at life from a "normal" point of view.

    Feel free to step in here, Wolf, before I get in over my head!

    Myrtle, you do belong on this thread, a does anyone else who is going through this journey. At some point we will/have already have to/had to re-evaluate our lives.
    • CommentAuthormyrtle*
    • CommentTimeMay 18th 2015
    bqd, Oh! . . . good. I think that Wolf explained what was going through my mind when he said, "We step forward into an idea and then the fact that most every other thing in our life is under siege, we doubt."
    • CommentAuthorWolf
    • CommentTimeMay 18th 2015
    Well...isn't that true for all of us??

    Ladies and gentlemen, step right up! And watch Wolf bare his soul right down to..the..marrow! Actually I'm thinking of changing my name to Vic. Vic Carious. I'm not worried about showing how fickle my feelings are right now because I can see with my eyes closed and a bag over my head that everyone else here goes through roughly the same things.

    As for Quinn and Ishmael let me get out the sharp knife and the mirror and I'll perform an appendectomy to Bach's fugue in a scene entitled feeling the fickle fugue of fate. I also think most people belong in the kiddie pool and I've seen dried up cow pies deeper than some relationships HOWEVER, I have to admit that these feelings suck large because the thing about being sure I'm superior in the depth of MY relationships as opposed to those of the hippos is that's hilarious. Wait. I'm guilty. Bonnie put that up and I looked at it and thought hey I feel like that and later (also known as now) I realize what a wanker I am.

    The real truth is I haven't met everyone and I don't get out that much lately and even when I did my circle was a joke if I'm going to base my own judgement on the rest of humanity. You all stink! I, however, poop gold bars. It's not you, it's me says Ishmael. I'm so deep and, well...

    Look good, play safe, learn nothing, die anyway. Sounds really tempting.

    Bonnie, you don't need my help. You're on it. And it does take many strippings of truths to stumble on a new perspective. For example speaking of hippos. Did you know that hippos can run really fast underwater? They positively gallop down there. Look it up.
    • CommentAuthorWolf
    • CommentTimeMay 20th 2015
    Last night I had a strange and vivid dream. I was juggling elephants and lost my balance which made me fall and my head went right through the wall and got stuck. The thing is that on the other side where my head was shoved into, it wasn't the same as on the side with the elephants. It was like a different world.

    And with my head in that world I had a strange thought. What if I just went on the weekend because I actually like being in a group every once in a while and I love cottages and now that I look at them - everyone there seems fine and not threatening. In fact that seems kind of funny because they're just people I've known much of my life. It would be fun.

    But someone pulled me out of the wall and with my head back in the real world I thought normally again which was that everything was threatening and that I don't want to be hurt any more and I know you hurt because here's what you did and didn't do! Oh, I didn't think that way. I didn't have to. I knew it.
    • CommentAuthorWolf
    • CommentTimeMay 23rd 2015
    I've had a ride these last two days. I picked up a message yesterday morning that the recently widowed friend who ran screaming out of our house that she didn't want to hear about alzheimer's and never owned up to that, now wants to have a memorial gathering for Dianne next saturday. She had already invited all the others before asking me. I didn't know what to feel when I heard that message.

    It's too raw for me and has only been 94 days now. I asked myself if I wanted to go to an intervention in the arms of friends and make this pain come out. I would be able to show them what wracking sobs look like. But to what point? I go back the next day and the next day and the next day right where I am, and releasing a swimming pool of pain is a drop in the ocean of what is in here.

    This is the basketball team group and so I called the two friends who's relationship never changed either before or after Alzheimer's - I talked about it when I had to or when I wanted to and the rest of the time we were doing what we were doing and all three of us just got older together. I don't know how or why but those relationships actually got stronger.

    I learned that they were planting a tree at the cemetary in Guelph the next town over and where most of them grew up, a tree dedicated to Dianne. They were going to tell me about it afterwards because they know how I feel. I will not allow any ceremonies and I will allow no one into the place that both of us built strictly for ourselves. I will probably never allow anyone to see my feelings if I can help it. My two friends know everything. No one else wanted in. That is enough.

    I talked to five of them and I did the calling which is highly unsual of me. Those five calls took eight hours to get through because I'm well enough that I could feel that they love her and want to do something for her and that they care about me. I could feel that. I've been humbled badly by Alzheimer's and I'm very grateful to feel. I reached out and opened up and shared things and listened to how much losing Dianne hurt them and I helped them talk about it and see more of how I feel.

    Today came the reaction which I have lived in all day. Today was raw and the long road ahead looked so hard and so lonely again. The damn breaking does no good because that water will torrent with no visible end and I already know that parts of me want to lay down and go to sleep and let this tragedy end. I did't want life without her.

    I came one day to suicide's door and I heard it calling and calling and that would be scary except I made a friend right there which was the knowledge inside I was never going to go out that way. We raised our thumbs to each other and I left. I'm on that road still.

    There comes a point when we're not struggling to understand anymore, when all the questions are answered, when all the planning is done, and now you are on the journey to find what you believe. The undiscovered country of an entirely new life. Full of fears and unknowns and certain death. And full of mysteries and stories such as the one about the tree planted in the cemetary in love and honour for Dianne the Celt who came for a visit and stayed for a thousand years.
    • CommentAuthorWolf
    • CommentTimeMay 25th 2015
    Emotional intelligence is the ability to recognize one's own and other people's emotions, to discriminate between different feelings and label them appropriately, and to use emotional information to guide thinking and behavior.

    Other sites describe managing your emotions as part of emotional intelligence and I consider that garbage because there are no such mechanics. When emotions are managed we change our behaviour from the emotions - we don't change the emotions.

    Being able to recognize how I feel and being able to label those feelings appropriately is the most useful thing I have to work with these days. The isolation and stress I have felt for three years while my wife declined has been over-arcing and the dominant driver of what I feel. Now grief which is clearly different dominates with even more powerful feelings. Isolation is my reality and stress has been my life but now bereavement which is described as reaction to loss dominates everything.

    And there is a new feeling. The feeling that I have to take action in this alphabet soup of miseries or I will be swallowed up by them. The stress of taking care of her and worrying about her has stopped which I can recognize; but, it is rapidly being replaced by a more solid and entrenched stress which is now that I can see myself a little, it's gruesome how much I have no life, how much any skill or desire in that has long been buried and hidden to help me keep going through the stress, and that underneath all of these facts the ability to access and use positives in feelings has been pulverized by ten years of abuse and torture to a human being - which happens to be me.

    I'm in a tough place and I don't believe anything else. I need my emotions to have any happiness and to help me in beliefs that I can find that. Bereavement can last for a long time as a dominant force. I have all kinds of emotional problems that don't actually involve grieving because they were already there before.

    For Alzheimer's spouses bereavement lands on top of deep emotional problems and delays the urgent need to address them. Depression is not a normal state. Being filled with anxiety and dread with just moments of escape for years is not a normal state. Instead the length of time living in those feelings compounds their damage.

    I'm in the same position as many. I have two choices:

    1. I can accept all of it as grieving and address grieving itself as the thing I need to heal from.

    2. I can accept that I have serious emotional problems plus I am grieving.
    • CommentAuthorWolf
    • CommentTimeMay 25th 2015

    The problem with bundling things the experience has done to us into the reaction to their loss is that we interpret unhealthy emotional issues as a reaction to grief and that is not true. The second problem is that grief is both powerful and poorly understood. We must go through it and we do not know how long because it's personal to each of us. It can last for years.
    What no one addresses is that it's almost certain that entering grief with deep emotional problems must almost necessarily affect the grief itself. It surely compounds it. And if the emotional problems remain accepted how do they obscure our end to our period of grief?

    And the problem with seperating them is that whatever we do about our emotions, we are almost certain not to feel any healing because we are also grieving. How can you tell you're out of depression in the middle of bereavement?
    As I've said, I blame society's stone age mentality which changes mostly where it must and seldom where it should. People in wheelchairs have done well these last twenty years. People with Alzheimer's not so much. We need emotional help.
    The biggest change I am going through these days (day 96), is that I can see a bit like a mist beginning to lift that I'm not anywhere near what I would consider a normal me or to use better words - what I would consider a healthy me.
    That is the millstone that seperates wheat from chaff. What is unhealthy is what the experiences I went through did to me. Those are actual, real world problems which I call clinical because if a qualified doctor diagnoses that you have depression or anxiety then you either have to accept there is an actual emotional problem.
    I can't help myself with depression without simultaneously stepping on grieving and after three months I understand that grieving is a real thing with it's own reality. There is a new elephant in the room there is zero doubt and it's different from anything else I've been through.

    My thoughts are to accept grieving as an important necessary thing. That means I'm not going to be happy and dancing anytime soon. Moments yes. Nothing is black and white. But I don't expect to solve my feelings while grieving and I do accept that it will run it's course when it does. I want to accept everything in time and I do things to help myself there which is usually remembering things and then thinking about them in ways that try to take an overall ownership of what I believe. One step at a time.
    But I have all kinds of other problems I have to face trying to move gradually to being a healthy person again. One of the huge steps here was to see myself more and have my own thoughts about what I was seeing myself doing and not doing.
    I've started walking and this year I'm pushing. Thirty minute power walks pushing every step. I've done it every day since I started six days ago and it has HURT. It's not the shortness of breath so much from smoking and not moving my body all winter. It's real pain in my knees, in my calf, in my thighs. My walks end with a 34 step set of stairs to climb to get up into my court. I expect nothing except to be running up those stairs before summer's end. When I do, grieving will have company which is one undeniable triumph.

    There are many battles and those 'battles' are learning to enjoy life again without worrying too much about how I feel now and then how I feel now. I want to learn to enjoy going swimming again which is available to me. I want many things. And the fact that I'm so bloody exhausted from the last decade doesn't change that I get to feel that I'm working on it which is something to do while my grief for Dianne does what it does.


    I sat in the den last night watching the NBA playoffs. So many of them are hurt with injuries but they fight to win. The couple across the street came over yesterday and brought some pie and talked about how I was. They noticed I had started walking. My TV room faces the court and when I sit there I can see across the parkette and often notice them in their kitchen way over there. I suddenly was them looking at me and I noticed I had my head in the side of the wing chair and had been sighing. In that instant I saw another example of how unhealthy I am. Of how 'not me' most of what I do in a day is.

    That's what I live though. That's the truth of my state. And if I don't care about that then who will? If I don't have empathy for my own plight who will? I will. I will help myself come out of the darkness and I will comfort myself that right now, that is the truth of my life.
    <<And there is a new feeling. The feeling that I have to take action in this alphabet soup of miseries or I will be swallowed up by them. >>

    Wolf, I thought you were finally onto something there a couple of paragraphs back, but then you fell right back into your cerebating. No, that's not a misspell on my part, but I'll let you figure out what I mean by cerebating.

    I used to work with a guy who had postulated a couple of "rules of motion" for himself. His first rule was "If you need data, go where the data is at -- don't sit at your desk and wonder!" I expect you'd do well to shut off that computer and get out into the world where the action is at if you really do "feel that I have to take action".
    It's hard to get off the computer. This will sound really stupid, but one thing that is helping me get my mind and emotions moving forward…instead of hanging out on Amazon doing too much online shopping…is opening up the deck of cards that's been in the drawer forever…and playing Solitaire. I'm not a card-playing person in the least, but I'm finding that just as my grandfather used to do before WWII, sitting at the table just playing endless games of Solitaire is relaxing and mind-freeing. ( I don't think the computer game would work the same way. The computer makes you jumpy and nervous after a while, I think.)

    And then of course there is the daily walk…one hour, rain or shine. Wolf, I would be careful about "pushing" too hard. If it is too strenuous, you might be tempted to skip a walk because you're tired or sore…and lose consistency. It's taken me eight months, and I've had to finally get serious about keeping the calorie count down to around 1200, but I've lost ten lbs. as of this morning. And my hair has gotten long enough to just barely get my French braid back in. (After just chopping it super-short while caring for Larry--no time or energy for hairstyles.) So I'm starting to get myself back again after the long nightmare…and I'm starting to see what "Myself" means these days. It isn't the same as before--I think I used to see life as a competition. I was always trying to accomplish things, get ahead, set and meet goals…now I couldn't care less about any of that. At this point in my life, I don't have anything left to prove…Alzheimers chewed us up and spit us out…and now I just want a peaceful happy life, having the nicest days possible…whether alone or not... and then waking up the next morning and doing it all over again. In truth, any day without Alzheimers is a good day.

    I was sitting here wondering if I should be so bold as to offer you a little advise and
    along comes Gourdchipper with the same motive. So now I don't feel so bold.

    I can relate to so much of your writings in spite of the large age gap between us. You
    are very good at analyzing all the emotional stages of caregiving, depression and grief
    but it seems as if that's all you're doing, and I'm getting a little worried about you. I'm
    sure your friends and family are also concerned.

    It's been three months since Dianne passed, but you were grieving over her a long
    time before that. I think almost everyone here would agree with Gourdchipper. It's
    time to take action and give up this cerebrating. You never know what action can do
    for you till you give it a try. Dianne would agree.

    Your concerned friend George.......
    George and Gourdchipper--I really believe that the walking is going to help him a lot. (Sorry, Wolf, I know I'm talking about you "behind your back." And for myself, I was still barely functional at the three-month point. Also, like many here, including Wolf probably, we express ourselves freely and at length on this website…saying things and agonizing in a way that would not be socially acceptable in the "normal" world. I think we need the venting…and venting…and venting. It seems to me that this whole bereavement thing is a one-step-forward, two-steps-back kind of thing. I'll start to be OK for a while…I think…and then it will hit me again like a freight train.

    So Wolf, keep us updated on what you're doing besides moping on the computer for hours on end. (Just like I do, too..errrg.)
    • CommentAuthorWolf
    • CommentTimeMay 25th 2015
    "I thought you were finally onto something there a couple of paragraphs back, but then you fell right back into your cerebating. No, that's not a misspell on my part, but I'll let you figure out what I mean by cerebating."

    Boy that's a tough one. Since I haven't been on anything from the start I suppose there's not much hope in getting this either.
    • CommentAuthorWolf
    • CommentTimeMay 25th 2015
    Alzheimer's spouses are very unlikely to be experiencing normal grief. They are likely to be experiencing a bundle of real world effects carried over which are equally unlikely to be worked on while grieving. That clearly takes years for some people and that is worth understanding. It was for me and that's what I posted.

    I can't help that people see what they want to see. You have to ask yourself how I'm doing three months afterwards and how you did three months afterwards because I'm not worried about that comparison.

    I explained at the start of this thread that the backbone was the journal of what I went through and welcoming other stories hasn't really happened. Not a problem. There are people who have trouble with conceptualization and articulation. Thus the resident thread where I did exactly this about placement, the lodge thread where I did exactly this to help people through the holidays, the never give up thread which I don't maintain anymore, the old man thread, and this journey out thread which ends in a predictable way if you just stop and look. I've never been stuck by Alzheimer's. Instead I have extra cycles. Alzheimer's hasn't even stopped my humour. What is it people are missing?

    In three months and in six months I'm going to continue to move along through the experience I've moved through all along where I've already said my journey ends here. When that happens I will know I tried to give back as I could.
    • CommentAuthorbqd*
    • CommentTimeMay 25th 2015

    Courage. This is the word that comes to my mind when I read your posts.

    You are baring your soul in this thread for all of us to see, expressing raw emotions that very few people even want to verbalize, much less put in a private journal, or a public forum.

    You have told us that this thread is your journal - I can't comment on a lot of it, because I have not been on YOUR journey. But I do read it, empathize with it, visualize your pain, and I am encouraged when you write bits like "is that I can see a bit like a mist beginning to lift that I'm not anywhere near what I would consider a normal me or to use better words - what I would consider a healthy me."

    We have agreed that this is a long process. You have been dealing with Alzheimer's and the different kinds of grief it brings for a long time, (certainly longer than I have). You will have to find your own way, in your own time, but I think that as we read your posts we are all learning from you.

    You have, and you do give back. And I hope you will continue to do so.

    • CommentAuthormyrtle*
    • CommentTimeMay 25th 2015 edited
    Lately I've noticed that my husband sometimes does not know what to do with food. Yesterday the unit nurse told me that he does not need help with some meals but he is starting to need a lot of help with others. So tonight I stayed with him at supper and was shocked when he docilely allowed me to spoon-feed him every bite, as though he were an infant. I avoided panicking and instead decided that from now on, I’ll visit at supper time so I can help him to eat.

    When I got home from my visit, I found a voice mail message from a relative congratulating me on our wedding anniversary. I had completely forgotten. Just 24 years ago, we loaded our bicycles onto a rack on my car and drove to Portland, Maine, to board the ferry to Nova Scotia for our honeymoon. We were so happy then and we laughed so much. The juxtaposition of that memory with my husband's inability to feed himself was sickening.

    As one who is prone to over-think things, I fight that tendency by taking action, getting out into the world, looking for the practical solution, and dealing with new losses in a matter-of-fact way, without unnecessary dramatics. But that does not always work. Come to think of it, maybe it never works, for there is no control group to allow for a comparison. And even if it does work, it does not mean I do not have some very, very dark thoughts.
    • CommentAuthorcassie*
    • CommentTimeMay 25th 2015 edited
    That is a great poem…but with all respect to W.H.Auden, I would say that life does not last forever…but love does.

    Thanks for posting this.
    • CommentAuthorbqd*
    • CommentTimeMay 26th 2015
    A friend of mine and I were talking last night about the inscriptions on the inside of our wedding bands. Mine says "495 more Love Ted". The 495 refers to a saying that my DH and I had before we were married, about how we would love each other for 495 years.

    But after I hung up the phone, I got a sense of foreboding that our journey through life together would end, not at 495 years, but at 495 months, and it set me to calculating what that meant. On Tuesday next week, we will have been married 470 months. So that is only 2 years and one month left, if my foreboding comes true, and it has made me very sad. So much promise back 39 years ago, and now so little to look forward to.
    • CommentAuthormyrtle*
    • CommentTimeMay 26th 2015 edited
    bqd, You are using numerology to predict the date of your husband's death. The kindest description of numerology is "pseudoscience." This dementia experience is bad enough on its own, without relying on a random numerical formula to predict the death of the afflicted person. Most people whose spouses are in the later stages of dementia have very little to look forward to in their marriages. But that's because of the progress of the disease, not because of a numerical calculation.

    Please do not do this to yourself. You are in the middle of a very stressful time -- the placement of your husband. You have succeeded admirably in finding a good place for him to live and in enlisting the support of your children. Build on that accomplishment and try to reject ideas that just drag you down.

    P.S. I just realized that since you and your husband vowed to love each other for 495 years, you were saying that your love would endure after both of your deaths. So how does Alzheimer's change any of that? Your love is still going to last for 495 years, no matter what either of you dies from.
    • CommentAuthorbqd*
    • CommentTimeMay 26th 2015

    Thank you for the P.S. It really lifted my spirits, because you are correct, our vow was to love each other for 495 years, and although the death of one of us may separate us physically, it will not stop the loving.
    • CommentAuthorWolf
    • CommentTimeMay 27th 2015
    After getting my haircut yesterday morning and going to the bakery, I saw the lady across the court waving and coming over. She wanted me to know she was sorry about Dianne. When I asked her how she was doing, she said she was hanging on. Her husband has just been diagnosed with alzheimer's. He's 85 and she's just over 70. They were the first to have us over for dinner a week after we moved in when Dianne was off somewhat but I thought it was a depression from retiring.

    We talked about it all for a while and I told her about this site and I told her not to call me - unless she was really stuck. She already has my phone number on her fridge because her husband has muscular dystrophy and I offered the same thing back in 2006. She was an intensive care nurse and still volunteers once a week. She understands what I offered and knows that when she gets into a situation or to the end of her rope - I will actually come and help her.

    I don't know how I would have reacted to someone saying don't call me unless you're desperate. No one offered to help me. That doesn't prey on my mind the way it did for years and I'm willing to put my paw out to get hurt. But only where I choose. This flurry of activity in the shallow end with people realizing they don't have to ignore Dianne anymore to survive doesn't impress me. I've had a number explain to me that people need an outlet to grieve. Not to ever visit her, not to ask how she is, not to acknowledge what she had - but so it's easier for them to grieve now. I don't call it the kiddie pool for nothing which just identifies where I won't be spending time and doesn't actually mean anything except social ideas that don't work for me.

    The negatives are destructive when the person is fragile. I'm not much different from my friend who had mental health issues and pushed everyone away because he couldn't cope. I told my other friend (those two went to public school together) that I had apologized to him once I understood from my own tribulations that of course he pushed everyone away - I was still just as guilty of not helping as anyone around me was with Alzheimer's. After saying exactly that the other friend spat out that he pushed him away. He was clearly still angry that he'd reached out and got pushed away. I don't believe that in life overthinking is the problem. In fact, I do believe it's the opposite that is the problem where just having thoughts isn't thinking.

    I'm not moving this year. I'm going to explore where I am and I think this is going to do for a while. I went to a number of places today including the gardening centre in a small nearby village where I bought a trunkload of flowers. Tomorrow I'm going to turn over the gardens and clean the pots and put them in. By next week I want to get my season pass and have gone swimming for the first of many times.

    I have only two jobs that I can see. Figure myself out so the answers stand on solid ground, and learn to enjoy the time I've been given. We used to be hippies for a while there and we both liked that period. We used to have a sailboat up on Georgian Bay we took all sorts of places. We both liked that a lot too. I'm not planning to spend my future growing my hair out and listening to The Grateful Dead anymore than I'm planning to hang around sailboats so I can hear the halliards clinking. I'm not doing that about Dianne either. Wolf & Dianne were 1969-2015.

    She's on my dresser and plastered all over the fridge. She crosses my mind numerous times a day but I don't think about her. Instead I'm covering the AD years with gravel and I'm going to plant some trees on it and I'm pretty much going to ignore it's details if not it's fact. I think this is about it's due: we got Alzheimer's which slowly killed her. Our feelings about that are that we both have our middle fingers up.

    Almost all of her things are gone. I found another packet of letters from previous admirers and threw them out. I'm keeping a few dozen things in the different closets and the house is littered with 'us' anyways which is just fine.

    I've talked about my sister and how she hasn't gotten over mom and I have. Maybe there are different types in this too. I know that my friend's mental issues are because he can't accept the business things that happened. He had five offers for positions as I remember and could easily have jumped sideways. Instead his fixation robbed him of ten years and has affected this last ten years too. I said recently I have to bring him along because I'm going to get past my past while he may never fully let that go.

    It's almost as though some last barrier inside doesn't believe it happened because he doesn't want to see that and so still struggles inside. I suspect that moving on and getting over stuff may be a tendancy where some do and where some struggle. I hope that's not true.
    • CommentAuthorbqd*
    • CommentTimeMay 28th 2015 edited
    "Out of the sighs a little comes
    But not of grief for I have vanquished that
    Before the agony. The spirit grows,
    Forgets, and cries.
    A little comes, is tasted and found good"
    • CommentAuthorWolf
    • CommentTimeMay 28th 2015 edited
    Here are 20 similies. I'm looking for something and came across these:

    1. “. . . she tried to get rid of the kitten which had scrambled up her back and stuck like a burr just out of reach.” — Little Women, by Louisa May Alcott

    2. “Time has not stood still. It has washed over me, washed me away, as if I’m nothing more than a woman of sand, left by a careless child too near the water.” — The Handmaid’s Tale, by Margaret Atwood

    3. “Her romantic mind was like the tiny boxes, one within the other, that come from the puzzling East . . .” — Peter Pan, by J. M. Barrie.

    4. “. . . and snow lay here and there in patches in the hollow of the banks, like a lady’s gloves forgotten.” — Lorna Doone: A Romance of Exmoor, by R. D. Blackmore

    5. “I would have given anything for the power to soothe her frail soul, tormenting itself in its invincible ignorance like a small bird beating about the cruel wires of a cage.” — Lord Jim, by Joseph Conrad

    6. “In the eastern sky there was a yellow patch like a rug laid for the feet of the coming sun . . .” — The Red Badge of Courage, by Stephen Crane

    7. “. . . when I laid down the paper, I was aware of a flash — rush — flow — I do not know what to call it — no word I can find is satisfactorily descriptive — in which I seemed to see that bedroom passing through my room, like a picture impossibly painted on a running river. — To Be Taken with a Grain of Salt, by Charles Dickens

    8. “. . . utterly absorbed by the curious experience that still clung to him like a garment.” — Magnificent Obsession, by Lloyd C. Douglas

    9. “She entered with ungainly struggle like some huge awkward chicken, torn, squawking, out of its coop.” — The Adventure of the Three Gables, by Sir Arthur Conan Doyle

    10. “He looks like right after the maul hits the steer and it no longer alive and don’t yet know that it is dead.” — As I Lay Dying, by William Faulkner

    11. “Past him, ten feet from his front wheels, flung the Seattle Express like a flying volcano.” — Arrowsmith, by Sinclair Lewis

    12. “Her father had inherited that temper; and at times, like antelope fleeing before fire on the slope, his people fled from his red rages.” — Riders of the Purple Sage, by Zane Grey

    13. “The very mystery of him excited her curiosity like a door that had neither lock nor key.” — Gone with the Wind, by Margaret Mitchell

    14. “Elderly American ladies leaning on their canes listed toward me like towers of Pisa.” — Lolita, by Vladimir Nabokov

    15. “Camperdown, Copenhagen, Trafalgar — these names thunder in memory like the booming of great guns.” — Mutiny on the Bounty, by Charles Nordhoff and James Norman Hall

    16. “It was Françoise, motionless and erect, framed in the small doorway of the corridor like the statue of a saint in its niche.” — Swann’s Way, by Marcel Proust

    17. “The water made a sound like kittens lapping.” — The Yearling, by Marjorie Kinnan Rawlings

    18. “Kate inched over her own thoughts like a measuring worm.” — East of Eden, by John Steinbeck

    19. “He swung a great scimitar, before which Spaniards went down like wheat to the reaper’s sickle.” — The Sea-Hawk, by Rafael Sabatini

    20. “. . . impressions poured in upon her of those two men, and to follow her thought was like following a voice which speaks too quickly to be taken down by one’s pencil . . .” — To the Lighthouse, by Virginia Woolf
    • CommentAuthorWolf
    • CommentTimeMay 30th 2015 edited
    When I list the most important things in my life - they're almost all gone. They were all Dianne centered and friends and family centered. Three sets out of four couples groups have been obliterated and those were the three we constantly saw. It was mostly her family we saw and that has became a wasteland.

    Her death is a much different thing even though the only visible changes are that I don't visit the NH anymore and her urn is here. Bereavement is a real thing. I painted almost every day for two years and haven't touched it and have put the easel away which to be honest I only really notice now. I'm also getting things done and going out but I'm almost a dead person inside right now. Underneath the deadness is a very fragile human being.

    Her death changed other things. When I was watching over her the realities were shaped by the fact that I had true purpose and that she was still here - however much was gone. I was far more able to enjoy myself at times then because somehow I suppose that made sense to me. I felt that I had built up new things that would help me - but her death has changed everything to things I do - but no longer enjoy the way I did last year.

    The only thing that stands unchanged is all the arguments and discussions I had with myself where those things I arrived at a judgement of and the arguments I believe in remain unaltered. Apparently the 'written' word is less affected by emotional upheaval.

    Bluntly, bereavement has decapitated my emotional ability to have fun for a while. I was actually happy numerous days last year and I had some real fun and also felt good at times. I haven't felt that since Dianne died and the clarity of what that means is just beginning however obvious all things always are in retrospect.

    The real information that I want is that I'm not getting worse. These reactions are part of how I grieve. When I look at that truth I have no problems with it now which is different from just knowing I'm powerless to change it anyway.

    I'm so bone tired of all this I want it to go away. I've been under real strain for a long, long time and she's at peace with this so where is my exit door from it too??? I look at examples of people stuck in this for years and I know there are events in people's lives that change them forever. Not just in the realities but in what they are willing to feel inside. That scares me, but right behind that is myself saying that's not happening because I won't let it.

    My experiences have taught me to believe in myself. That doesn't mean anything except that I'm not that interested in who went before me - I have to learn it all myself and decide for myself. I'm never going to be any other way while my mind prevails. And that is the plan. Beliefs don't come from the mind but they necessarily come from using the mind.

    Am I getting worse? No. You're grieving idiot, and no. It's not anything I'm doing that's making my life so fragile and bad these days. Idiot. And we're not coming out of this three months from now so put those hopes away. In the meantime, here's a shovel. Keep digging away at your life because just like it did with her in residence, that is going to pay off down the road.
    Sounds about right to me. Hang in there, Wolf. You are not alone in this.
    • CommentAuthormyrtle*
    • CommentTimeMay 30th 2015 edited
    OK. Back to the subject of friendships. This time I'm going to try to explain my thinking more clearly.

    Alzheimer's or no Alzheimer's, you are always going to have an attrition rate with friends for one reason or another, so it's unrealistic to expect that the same friends will still be there decades after they first appeared. You've got to keep replenishing your stock of friends on a regular basis. If you have not done this regularly before Alzheimer's strikes, you are going to have a real shortage of friends because it's almost impossible to make friends when one of you has this disease.

    It's like running a business. If you hire an adequate number of employees in year 1, you can't assume they will still be around in year 40. You are going to lose a certain number to attrition. So you have to keep replenishing your personnel throughout the years. If you have not done that, you are going to be short of skilled employees later on. And if the worst happens, and for a period of years you lose your competitive edge in the in the employment market (as we do in the "friendship market" when Alzheimer's strikes), you do not have a sufficient number of employees to carry you through the rough period. And it weakens your business.

    I realize that some people will think I am cold-hearted to compare the need for friendships to a business's need for employees but that's how I see it.

    To clarify, I did not make friends based on the business model I described above. It's just that now that I look back at my life and the lives of others, that's the best way I can explain what I have seen and experienced.
    • CommentAuthorWolf
    • CommentTimeMay 30th 2015
    Elizabeth, the practical question is can we find something that works for us in some useful way? There are many issues about afterwards but one aspect is finding out useful things that work to solve or help in some particular thing.

    One example I can think of is changing my bedroom lamp to a lower intensity bulb (60w to 40w) and bringing it closer to where my head is. It makes it easier for me to read which I often like to do for a while before falling asleep. A bigger one about sleeping was letting myself fall asleep with the light on. I found that often I would read, shut the light off, lay back down, and for whatever reason then stay awake. Now I don't mind waking up with the magazine stuck to my face or all wrinkled up because I learned to relax about the light on and when I drift off - I fall asleep.

    A different thing is that I'm halfway through putting the flowers in. I only put them in the front of the house. I wouldn't water the back ones properly I don't think so I don't deal with that right now. I don't like doing it. I'm not really interested. I did it the first years because Dianne did and I tried to keep that up. It was just as hard this year. The thing is that once they're in, I come out and water them. I weed them. I watch them. And it ends up being a good experience. What I learned there was to make myself go through getting them and putting them in because even though I don't fuss over them - I end up being involved.

    Another thing is the TV. I talked about that. I had to make myself watch at the beginning and a lot of things made me react. I often shut it off. It literally was only that I knew I was in a battle to reclaim this that I went through watching the Alzheimer's commercials, the retirement of happy couples commercials, the deeply romantic moments, the shared moments we both loved, and learned to sit in front of the box again. It was the second part that has made television one of my friends because somewhere before dinner time I will turn it on and scan through the channels to see what's on. What that means is that I find a science show I want to see is on at 7 and The Goodbye Girl is on at 8 and I turn the TV off knowing I want to watch those tonight. Other nights I don't see anything so don't watch and on lonely nights I might put on the antiques roadshow or american pickers or a baseball game and go upstairs doing other things while the now radio show keeps me company. As I type this Mr Roberts is on and right now Jimmy Cagney is having a meltdown. Television gets mixed responses but it is a goldmine of input and interaction when used in ways that suit us. Japan had a big earthquake. They just had a volcano explode a few days ago. Greece might just meet the early June requirements and not break up with the EU. Our NBA team might be getting it's own D league team. And the Light Rail Transit being put in which has the city in a traffic mess, is behind schedule. I wouldn't know any of this, it gives me things to think about, it gives me things to see, and input is important for people.

    You talked about going on one hour walks. Why? What do you look for in that? How can you tell what that's doing?

    For me another area is cooking for one. I've learned a lot about that both good and bad. The thing is I need a relationship with eating so I'm stuck with learning how. One answer was having a range of things in the house that keep and have an equal range of how long they take and how much work they are (my motivation moves around which I bet is a common problem).

    Anyway, I just remembered I have to put the leftover stew/goulash I made into the fridge.
    Regarding walks: My house is across the road from the paved walking trails in the local Metropark, so it is a free and convenient way to get exercise and also to relax and clear my head.I can walk in all seasons and not have to take my car out to do it, or have special "gym clothes"…it is convenient and easy. In winter, the Park plows the walking trails before the City plows the roads. The only time I really don't walk is if the trails are icy or if there is a hard, driving rain. I see all kinds of birds and animals, wildflowers in season, and also I always walk to the creek. There is something profound about watching the flowing water. I don't know what it is…but it's satisfying to stand on the bridge and just watch that water flowing over the rocks. I just picked the "one hour" because I can make a satisfying trail loop in that time. It could just as easily be 45" or an hour and a half or two hours…the walk I like to do takes one hour.

    Just a thought regarding TV: I still don't like TV much because the commercials drive me crazy. But I've become a big fan of watching DVDs and of watching Amazon Prime streaming video and also Netflix--both streaming video and DVDs. I can't believe all the great stuff that is on…old TV series I never saw, cute family movies, animated stuff, romantic comedies…I am watching all 15 years of Midsomer Murders--I'm up to season 8. Great stuff. Larry was such a big TV watcher that I just let him have the remote, and we watched what he liked…which was fine with me. I had no problem with the Yankee games or Turner Classic Movies or lots of EWTN. Truthfully, I was just as happy to read, because I'm a hopeless bookaholic. (Just need to say no.) But after he died, when I started tentatively starting to pick and choose shows I liked just for myself, I was astonished at what was out there…and no commercials! Wahoo!
    Don't forget I was working all those years…I would come home and start cooking…there was a look-through from the kitchen to the family room, so I could cook and read my book while kind of glancing at what he was watching. My post up above made it sound like I just zoned in front of the TV all the time…no…no way.
    I love your walks Elizabeth, very good for you. I know you are struggling and grieving, and I also know you are strong and wonderful and really full of life. Your posts are very uplifting. Thank you.
    I read an interesting one sentence prayer in my Griefshare book last week. Sorry, but I don't remember who wrote it. It has just stayed with me...Lord, please don't let me allow myself to die while I am still living. I am still seeking God's will for me at this stage in my life. I want something positive to come from this journey. It cannot be all for nothing! I cannot be around other dementia patients right now. Just the look in their eyes sends me reeling. Too soon for that! But I am determined to find a way to minister to others that are in the grips of their own struggles. I have a heart for caregivers now that I was just so ignorant of before. Hospice was a God send for us. I am considering volunteering in that arena perhaps. Just don't any of you throw in the towel and give up. We must muster on and make sure that our loved one's torturous demise was not in vein. We are left behind to help others along the same journey. We have the experience and can empathize. Perhaps we can even make a real positive difference in someone else's life. The good Lord knows, I sure would have appreciated a real physical body here to help me out occasionally! All you guys were a wealth of information and great companions. We know how secluded, alone and desperate the situation gets. There has to be a way to pay it forward once we are released from our 24/7 obligation of never ending care giving. Or maybe it is just the nurse in me...perhaps this is what I need to do and it is just mumbo jumbo to the rest of you? I wish you all well...especially those of you still in the trenches. I promise are in my prayers continually! I have not forgotten any of you just because I am clawing my way back to " the other side" of caregiving.
    Edited just to say that I just read the same one line prayer on someone else's fb post. Apparently it is more popular than I realized.
    • CommentAuthorWolf
    • CommentTimeJun 12th 2015
    If I have the good fortune of living as long as some here then I have 40% of my life ahead of me. If I don't see living as good fortune then it won't really matter how long I have because it'll be like a burden to live. If I do see living as good fortune then I win, and the amount of time doesn't enter into it.

    People think I'm grieving and I am but that's not the main story.

    I have to go back to just before I knew she was dying and look at my state then and my recent history of events then to see that I had serious issues before bereavement came on top and somewhow became the only thing happening. That's not true. What is true is that I still have those issues and they form part of how I'm experiencing grieving.

    Here are some of the changes that happened when Dianne died:

    The main task of my life which was caregiving stopped.
    The reason for not thinking about myself for years stopped.
    The people around me protecting themselves from AD stopped.
    The reason to live without hope and just stay strong stopped.

    All the other changes are common to anyone who loses their spouse as far as I've thought this out so far. Those are heavy hitters though and together they form challenges most get through life not facing. The vast majority grieve from a much healthier state and yes that matters very much.

    If I were asked where have I pushed myself too much the answer is nowhere. I literally collapsed several times taking care of Dianne because she never stopped. When I woke up I went back at it because I had to and I knew that - so whatever the torrent of crap I was facing, I did it. Not wanting to go down but willing to go down. All that is common among us.

    I get royal treatment. The rest of my life. I'm in a fragile transformation of my entire identity which everyone who loses a spouse goes through, but I'm in that fragile transformation in an already damaged state which is why I get royal treatment (to the degree I can afford it).

    And my job is to learn to enjoy royal treatment which sounds like a comic book but is actually one of the hardest things in life to honestly learn (for most - some come out of the box ready for that). I call it royal treatment because just like the individuals, and the unique perspectives, and our natures; what that means is going to be different for everyone.

    I went out to dinner with someone on a date. It was just fine and we talked for a couple of hours. I did that because people are a pain in the ass. Now that I'm free of the disease it's safe enough to show their feelings for Dianne and come closer to me. I should get on with my life. I'm already seeing someone. Awkward silence. (who writes this garbage? why am I on the wrong planet?)

    I was going to characterize grieving as lugging around a life-size crash test dummy with you literally everywhere. That wasn't enough fun so I've turned it into a life size helium balloon and I'm thinking of naming it Judy. Darth is intrigued about going to bed with Judy but I'm trying to explain it's just a concept that's going to be lugging us around for a while whatever I'm yapping about.

    Learn to enjoy the 40% of my life ahead of me. It's like being chained in prison with the key ring on my belt. If I Oh well. I don't expect anything of myself this year anyway which may as well be called the grieving year.

    My real phrase for this period is the precarious transformation of identity. No one may agree that to get from the old life to the new life we must transform ourselves. I do though. I don't think externality details mean squat. I don't think going out means you're getting healthier. I don't think wrestling with it all the time means you're not. I think instead that generally people are their own worst obstacles even when they're trying to tell themselves the truth. When we say ourselves we mean our identity and when that core has to change to move into new fundamental realities while we are in these states, that is precarious or fragile as you prefer.

    Do I think I'm pushing too hard here on day 114? No, it's not even close. I'm not fighting grief. I accept grief is here. I was able to write some comedy and paint right up until she died and I haven't touched either since. Grief is real. But so is where I was the day before she died which didn't magically go away - it gets hidden by how much room grief takes up now. I have my fingers around it's neck though and I refuse to let go.

    How all this is condusive to learning to enjoy life escapes me. It escapes Dianne too but that's a different story.
    Interesting post. I was thinking about putting something on the Widows/Widowers thread today, but maybe I will just write it here. At the nine and one-third month point, I am finding that I'm enjoying the moments a lot more. I miss him dreadfully, and yet I find that more and more I can look back with a grin and be so grateful for the good times…for having had the marriage that everybody wants and most people don't get. It gives me a happy feeling to think about it. I am at least standing and looking at the "shrine" that is my bedroom and at least considering that if I took all those pictures off the dresser…and maybe left just one nice portrait of him there…that I would have a lot more room for my stuff. The flag could go in the living room near his military medals.Yeah, I'm talking about "my" stuff. Not "our" stuff. And I find myself calling the bedroom "my" room instead of "our" room. What a novel concept.

    And I'm doing a lot of thinking about the future. I'm trying to see if what were more or less hobbies and interests in the past can truly become more major parts of my life now that Larry and my nursing career are both gone. Playing music and working on my writing projects are coming easier…I'm not just forcing myself to do it through the pain, depression, etc., etc. I'm starting to see a good, workable, genuine path forward.

    It's true that once in a while there is a "grieving" day, or a "vegetative" day--a day where I'm very tired for no reason and just want to sort of retreat from everything…sit on the porch and play solitaire... where I really have trouble getting in gear…but it's not nearly as bad or as often as several months ago. I'm like Wolf in that I'm not expecting anything much out of myself this year. I'm just going to kind of go with the flow in this grieving year 9/2/14 until 9/2/15 and then see where I'm at.

    I guess what I would have posted on Widows/Widowers would have been to say that the fog and clouds are still there, but they are gradually dissipating and blowing away.
    Elizabeth, I am very happy to hear from someone who is a bit further along on the grieving scale than I am. It has been only 6 weeks and I find myself not enjoying anything very much. I am functioning and getting things done, but it is just that nothing feels very good and I feel incredibly disconnected from anything. I have not cried much since the funeral but I believe I did most of my sobbing when I placed him. In the beginning I did feel a great deal of relief of not having to deal with any of it anymore. It is amazing as I look back just how much of my life was involved with his care. On the grieving days, it is hard to concentrate on anything. I tend to misplace things--went to Wal-Mart and lost my car key. Thankfully they found it and I got it back.

    I did order his grave marker and it was not as difficult as I thought but still not easy. I know many people put this off but I am choosing to move forward and bring a sort of closure. I have only been to his grave once since the funeral but plan on going more once they get the grave marker down. I went to a late stage Alz support group on Wednesday for people who are at the end or have lost their loved ones. It was okay--I find I just need to talk with people who get it. I am not planning anything big this year. I spoke with the Pastoral person with Hospice and he said I will need to find a new purpose and it will be by trial and error.

    A lot of my depression and sadness comes with the thought that maybe I could have done more but I know realistically I could not have and anything that I could have done would not have changed the ultimate outcome. I worked so hard to him for him to have the best possible care and I hated the fact that I had to place him but I knew that keeping him home would have killed me. I am still having flashbacks of the last few hours but not was much as in the beginning. I spend a lot of idle time on my IPad and sometimes stay in bed a long time before getting up in the morning. I give myself permission to do that. I too am thinking about what now. Have thought about getting a part time job but as I said nothing feels right now so I think your suggestion of "going with the flow" is the best advice. Thank you.
    I had to chuckle (sorry, just couldn't help it) when you spoke about losing things. For a while there, that was happening to me, too. I would put something down and then didn't have a clue where I had left it. My glasses, my car keys, the book I was reading…it was because I really was only thinking about Larry…my mind was always focused on him, even when I was seemingly doing something else. Fortunately the "loser" phase didn't last too long. I still think about him all the time, but seem to be able to hold onto my possessions while doing it.

    In terms of thinking up what we should do with our new, post-Alzheimers life…here is a quote that I like that I actually copied down and keep in my prayerbook. It is actually from a blogger on frugal living…but it resonated with me, for some reason.

    "Life is not a contest to see who can accomplish the most. It is simply a series of days where your goal is to wake up, have a great time, and go to bed even happier than when you woke up."

    Now for me, that is a profound quote, because I tend to define myself by my accomplishments…or I did. Post-Alzheimers, I just don't think that way anymore. I'm more just trying to enjoy the days (hours, moments, whatever), go with the flow as we said above, and just "be." Moments of happiness, random acts of kindness, going a little Zen and enjoying nature…I am pretty sure that I'll recapture some purpose and direction at some point, but right now…well, I'm still in recovery mode, I guess.
    • CommentAuthorWolf
    • CommentTimeJun 13th 2015 edited
    Those are transformations and fundamental ones where ours to mine, and we to I, and how I see myself, and what I think, were in my opinion actually already transformed by what happened. This part of those is the back half and more moving in which isn't ownership in the sense of owning the chair but ownership in the sense of moving in to the truth of our lives.

    None of it's easy but if I push away the hardest parts then I'm neither honest (I need as much truth as I can find because those are never the first to blow away in a storm), nor am I whole in my feelings about losing and missing my soulmate because the truth is that I miss her very much. Allowing the hard times when all that hits is the real shrine for me. I have a place I've put some of her favourite things around as a place of honor for her; but, my relationship with Dianne continues in the real world because my half of that relationship is still here and still pines for her and still mourns for our tribulations. Enduring that honestly in my opinion is respect for the truth of us.

    It's so easy to lose our way when we're in this state. When we were all healthy it was easy to say that if one of us passed early then we would VERY much want the other person to be happy again. And we meant that I believe. But we didn't understand then that the survivor would be struggling in a sea of loss with plenty of power to overcome us.

    When I say I'm going to fight and to push - I mean I'm trying to honor the real truths of our partnership which isn't just how great it was but also what gave it integrity. Dianne desperately wants me to find my way and even though I don't feel that yet and am not suprised that I don't feel that - I think it's one of the mainsprings of what I believe.

    edit - I would very much want her to be happy again with no restrictions to that and that can only be truth in the partnership if it's also true for me
    • CommentAuthorWolf
    • CommentTimeJun 19th 2015
    I would never be able to say how much of my doing this was my own fears knowing her death would hit me hard or how much was bravado and pep talk. I've found in life that the tiresome work of seperating all the threads is almost directly proportional to the general lack of interest in those answers.

    It reminds me of a joke. A frustrated driver has been circling the block for 20 minutes trying to find a parking spot. They turn to prayer: "please God help me find a parking spot because I really need to deliver this report". Suddenly a car pulls out from it's parking spot just ahead. "Never mind!", the driver whoops, "I just found one!"

    Grieving - not exactly like a crabby and bitter relative moving in but not altogether different either. Not exactly like a team of retarded horses trying to trample you but not altogether different from that either. Not exactly like being chased by a troll with a cattle prod but...well, you know the rest.

    I should get a big discount off grieving because this grieving has already been used; but no, I have to pay retail because this grieving isn't that grieving apparently. I've noticed that whatever the arguments are, somehow I carry all the luggage. And I can promise you that the second I get an arm free, I'm going to complain.
    • CommentAuthorWolf
    • CommentTimeJun 20th 2015
    Along with the others listed on June 12, I have a new one. It isn't just the things that stopped which changed.

    When Dianne died, I became an alien in an unknown world like a fish suddenly out of water. It happened in an instant but it took time to spot even though I've been talked all around it. The many things I still know and that I have in my life I may have been listing partly to shore up that it's not all alien. It hit home when I simply explained my situation.

    "My wife of 46 years recently died after a long and fatal illness."

    And how am I doing? I still know how to dress myself and I still know how to drive and some familiar people are still in my face; but, I have no idea what a widower is or does or what a single person is or does. I've lived in silence for years now but still in the 46 years of us. Still with purpose to see that through for us. The last scenes of a life I understood.

    I've been busy. I went out on a date. I went out with relatives. I went out with friends. I went away with friends and I went away by myself. All in the last two weeks. I've had long talks about it because as I explained friends and family are moving closer now that AD has gone away. I got a letter that a large group of them contributed to a tree planting in her name when they had a celebration of her life last Saturday and I wrote down a number of memories for them when I thanked them. That led to other conversations and emails back and forth. I have numerous open invitations offered. I should be feeling something about all that.

    What I feel is my skin crawl. I know myself reasonably well and even though I'm doing all this stuff with both old and new, the thing that keeps dominating is how very tired I am of continuously having to change in powerful things but never arriving anywhere.

    There is evidence that other things are changing for the better. I have half a dozen annual get togethers which have remained on offer. Last year I went to two of them and it was a challenge. Two years ago I went to one. All those years were dominated by my victimhood by Alzheimer's. This year is distinctly different by miles. They have transformed back into just people I've known a long time and I appear to have more normal feelings about how I think about things on their own merit.

    I wake up pretty much every day after sleeping well and I often lay there for a while and let thoughts drift through. So many mornings when I did this two years ago I was already arguing and battling against the things I was facing. Last year I could see on many mornings that the old arguments seemed less important. This year for months it's quiet and peaceful. Lonely and alien - but quiet and peaceful. I can't even be bothered listing the old complaints that have become unimportant.

    I've also come to notice that I have trouble doing anything for me (sugar treats excepted). I haven't bought new clothes I could use. I haven't gone to the dentist. I haven't bought the new pots, pillows, vacumn cleaner, or computer I really should get. I can't get myself some takeout or go out to dinner without real determination. I haven't gone anywhere spontaneously to have fun by myself. I haven't had anything done to the house. I can see my years of denial and self neglect are going to take some effort to begin to turn around.

    I've also noticed that time is speeding up. In the first year home alone I couldn't have told you what month it was. I've written about this. It's changing quickly since she died just over four months ago. Now I'm suprised so little time has passed when I check. I've been using the stove timer extensively these years. If I need to stir something or turn something over in the oven or start boiling the water at a certain time I always use the stove timer. These days it often doesn't go off because I've come into the kitchen on my own timer which means I'm more aware of time and where I am in it.

    Underneath all of these things though is the new thing that started when she died. I don't know who I am anymore or why. I can't invent that overnight. And I'm so bone tired of staying strong and keeping going that I don't want to start walking through another long alien valley of oppression where I'm isolated not by Alzheimer's but by the truth that I'm a stranger in a strange land.

    Even I can see they're all necessary elements in the change I must undergo. I'm just tired that's all.
    • CommentAuthorWolf
    • CommentTimeJun 21st 2015
    Throughout recorded history and from archeological evidence, grieving for lost loved ones has been one of the most powerful drivers of human behaviour.

    One of the key things to understand about the mountain of global evidence for that is that at every moment for thousands of years it has always been modern times. Just as we do not think of ourselves as someone's future history or our ideas about reality as archaic - all people in all times and all places saw their thoughts as the same modern thought which we do today. That will be true of the many generations to come as well.

    Our modern thought is tomorrow's old ideas. All people were property at one time of the tribe, then the 'king' wasn't, then some barons weren't, then white guys weren't, then women weren't, and someday perhaps no person will be property. On every day in every place what was being done was the proper thing and the latest thinking even though we can all see the latest thinking changing in our own lifetimes.

    Two things that are common everywhere that talks about grieving are that it is a very powerful experience and that what we experience is personal and ranges widely which is why there is no rigidity in the advise these days.

    Ultimately, that means that while grieving generally has always been understood to be a powerful part of our experience equal in some ways to child births - our grieving specifically has never been understood because it may as well be unique.

    One part of the reason that's true is because each person's grief happens in each person's personality and beliefs and fears and strengths and current circumstances. For my part I'm coming to understand that my own grief is more powerful than Al Zheimer ever was and why that is. I did it for her which I accepted as purpose I believed in. This is different. For one thing the entire thing is inside me.

    I continue to believe that our dementia experiences and other life experiences building up to the moment grieving triggers are obliterated but did not go anywhere. It turns my stomach to try to make myself keep those issues visible while I'm learning how powerful bereavement truly is. If I don't though then my major anxiety attack in the last months when Dianne went in and out of palliative care which I can prove still affects me today - will be swept under the rug and obscured by this large, new, and proven powerful thing.

    As a result of my new respect for what bereavement is like for me I have to help myself with an interim and more immediate goal. While I continue to try and figure out what a life for myself would look like and continue to try to help myself get over what dementia did to me - I'm seriously going to have to figure out now how to live with this enormous, new condition.

    I don't have a new life. In order I have: a new state (grieving), existing issues (years of dementia caregiving affects), and a new life (as undeveloped as a newborn).
    • CommentAuthorWolf
    • CommentTimeJun 21st 2015
    A man walks into his doctor's office for his first appointment after his wife died. The doctor says he's sorry because she was his patient too and then asks how he's getting along with the issues they discussed the last time which were that caregiving was taking a huge toll on his health and his emotional well being. The patient who welcomed talking about it the last time now stares at the doctor blankly. "Everything has changed." he answers.

    I leave it to you to decide which way the doctor shakes his head.

    For myself I need a way to begin to try to understand the more complicated me now where the things that are changing in my experiences far outweigh the things that are not. My goal isn't to solve anything which I deem impossible these days. My goal is to help myself.

    A lot of this is about the state I am in. A lot of this is about the life changes I am in. Grieving is a state I am in - not my life. I have listed some of the key aspects of each for me:

    The state:

    New reality
    Unresolved issues
    Self image

    The life:


    Grieving as m-mman said is a state we have to go through. Isolation comes from the AD years. I am already in a new reality so it's a state. I have unresolved things that were very important until the second she died. How I actually think of myself now is going to be part of this.

    My life is what I do, how I'm involved with it, what relationships I have, that I get feedback from other places which isn't just my thoughts, and the bedrock of any person's life - my beliefs and my opinions about everything.

    I've also looked around and can't see anyone talking about a third shoe to drop. I think caregivers of long term fatal illnesses should get a bye in grieving. As usual nobody asked me my opinion. All righty then.