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    • CommentAuthorWolf
    • CommentTimeMar 11th 2014
     
    Whatever my darkest hour and wherever my hardships take me I will never lose faith because I can feel in every cell that I am part of the family of life, that I am of this place, and that I am here now and like every other creature we all have our time and we all seek our way through that time for some meaning.

    Never lose faith even in the darkest hour because all share those darkest hours and none are truly alone in them. Never give up however traumatic or tortuous the way because no one here knows the future or when a helping hand may come.

    I am of no known religion yet when I walked through the fire where every aspect of me had given up and thought incessantly of suicide for months, the thing was not allowed to be done; instead my faith in life watched over me steadfast and patiently never letting me give up until I came out of that valley.

    That changes you. It changed me. It taught me that I want to survive. I am part of the thread of life and although no part of me wants what I have and I am still lost, I know what I believe which is that the good exists around us and it's worth fighting for.

    https://www.youtube.com/watch?v=mYg-oEmih3g
  1.  
    I just watched the video. I am in awe of how quickly strangers jumped in to help. Then I thought of us here. All starting as strangers and all willing to help in any way we can. And how important we are to each other.

    Wolf, I don't know what to say, other than I am glad you are here with us. You have helped me so many times. Words fail me right now, just know that you have a place in my heart.
  2.  
    plus 10 points and a big "LIKE" for Wolf's & blue's posts!
  3.  
    Wolf, I too am glad that you have weathered the storm, you have so much to offer our society. I have often been reminded of a song I heard when I was a teenager. It was sung during the first movie "the posiden adventure" it was sang by a young woman,(might have been Karen Carpenter now that I think it thru, it was around 1969) "there's got to be a morning after, if we all make it through the storm." That has now become a mantra for me. Wolf for you and all of us, THERE is a Morning After !!!!!!!
  4.  
    Hi Wolf--I've been thinking about your post since yesterday, and just now watched the video. While our predicament is slow death by Alzheimer's caregiving rather than the situations seen on the video…the fact that we are here for each other all the time, for years, is just as dramatic in a way. Thanks for the post, and I'm sending everyone a virtual hug--wish it was in person.
    •  
      CommentAuthorCharlotte
    • CommentTimeMar 12th 2014
     
    I agree Shell - the words do have some meaning for us.

    MAUREEN MCGOVERN
    The Morning After Lyrics
    There's got to be a morning after
    If we can hold on through the night
    We have a chance to find the sunshine
    Let's keep on looking for the light

    Oh, can't you see the morning after?
    It's waiting right outside the storm
    Why don't we cross the bridge together
    And find a place that's safe and warm?

    It's not too late, we should be giving
    Only with love can we climb
    It's not too late, not while we're living
    Let's put our hands out in time

    There's got to be a morning after
    We're moving closer to the shore
    I know, we'll be there by tomorrow
    And we'll escape the darkness
    We won't be searching anymore

    There's got to be a morning after
    (There's got to be a morning after)
    There's got to be a morning after
    (There's got to be a morning after)
    There's got to be a morning after
    (There's got to be a morning after)

    There's got to be a morning after
    (There's got to be a morning after)
    There's got to be a morning after
    (There's got to be a morning after)
  5.  
    Thanks for looking it up Charlotte. Lets keep on looking for the light.
    • CommentAuthorMim
    • CommentTimeMar 13th 2014
     
    Thank you, Charlotte.
  6.  
    this video has really stuck in my head. Sad and crazy and kind all at the same time.
    • CommentAuthorWolf
    • CommentTimeApr 2nd 2014
     
    You don't know what good thing can happen if you hang in there.

    https://www.youtube.com/watch?v=p2zUf06iy1A
  7.  
    Just tearing up over that video. When you think it is such a nasty world, it is wonderful to see such grace. Thanks Wolf.

    I also have been watching those documentaries on Youtube, the ones you said Wolf. There are so many good ones, and free.
  8.  
    I agree with others Wolf. Thank you for the frequency and depth of your contributions throughout this site.
    Your sharing of your journey and insights truly helps me with mine.
    Great videos!
    LOVE the words to that song Shell and Charlotte.
    Thank you all.
    • CommentAuthorWolf
    • CommentTimeApr 28th 2014
     
    I've been doing so well. But tonight something happened that made it all come crashing down. I went outside to talk to someone and when I got back inside I took my shoes off, hung up my jacket, and going up the stairs went down on my knees pounding the carpet and heard my anguished voice wailing "It's so hard. It's so hard."

    Yes it truly is at times. And it's ok that I break down sometimes. It's important that I not hide that from myself and instead help me to get back up again. There is an unwanted future alone to face and there may be a long time yet of trying to keep her going in her pitiful state.

    It doesn't actually matter what set this off. It matters that what humans are hurt by most is not what they don't have - but what they lose. I have lost a decade, my soulmate, and my way. All I have is my beliefs. And the love. There has been a great deal of love in my life I notice now that so much of that is gone.

    And my beliefs. Which is to look into the blowtorch as I melt. To watch the blade enter me. To feel the cannonball go through my chest. And to rise from carnage and strike again. Time and life will take me but it will take me unbowed, unbroken, and fighting like a banshee to take an eye out before I go down.

    I fight those battles in a surreal and suburban, middle class landscape and the battle metaphors are actually wrestling matches with the heart. That is where the carnage is. In my heart. And that is who I am trying to save on this battlefield. The ability to love and to be hurt and to keep loving. The ability to feel sympathy and empathy and to be hurt and to keep feeling them.

    That is what I mean by looking into the blowtorch and feeling the blade enter. That is the field of truth. That I open my heart to life in the fullness only I know and recognize and be vulnerable. The battlefield is that I remain aware of that and don't give up. Giving up is believing that feeling like this is normal. That I am this.

    No. I'm enduring one of the worst experiences in human existence and it beats me down for that reason. I lose my other half and that is a massive hole for all of us. This is a worthy opponent. Which I will beat through love. That is my truth. It was a casual truth between us as with so many couples. "I want you to be happy." I didn't know back then I would be the one finding that path. I've changed that to wanting a life that feels worthwhile and fully lived. And I've learned the path is through the heart.

    https://www.youtube.com/watch?v=Wl2_knlv_xw
  9.  
    Oh Wolf, again thank you. It is truly so very hard.
    I too find at unexpected times, I truly do break down, sometimes in public. I have come to the place where I experience the despair, grief, or whatever is wanting release and then try to carry on again. Sometimes I feel like I am on a roller coaster ride. And on we plod, the human spirit hopefully wanting survival.
    There have been times I have questioned whether I could go on, endure the ongoing losses inherent in this disease. I am thankful to still be here.
    I am managing and far from a life of joy and living fully. I am working on it though and agree it is our hearts to live life in its fullness.
    I want to keep myself open and not close down out of fear and pain.
    Loved that video and wrote the line in my journal - "We may all look different but our hearts beat with the same dream."
    • CommentAuthorWolf
    • CommentTimeApr 29th 2014
     
    Everyone should watch this one. It's simply fabulous.

    http://www.youtube.com/watch?v=v5XyPryLkSw
  10.  
    Fabulous video is right!
    • CommentAuthorMim
    • CommentTimeMay 1st 2014
     
    Is there a title for the above mentioned video. I don't seem to be able to find which one you're referring to.
    • CommentAuthorWolf
    • CommentTimeMay 1st 2014
     
    Hospital Window - Inspirational Video

    That's the Utube title. You can paste the address in your search engine line and press enter. Or you can click in the current AS address above, backspace out the current AS address, and paste it directly in there and press enter.
    • CommentAuthorWolf
    • CommentTimeMay 1st 2014 edited
     
    edited by wolf
    • CommentAuthorMim
    • CommentTimeMay 1st 2014
     
    Thank you Wolf. I watched two of them - very touching indeed.
  11.  
    Thank you wolf and the rest for the thoughts expressed in this message. I came here tonight looking for a way to express my feelings and find some comfort.

    Today I had the experience of coming in my house after I took my DH to Day Care and just breaking down.
    I could feel the pain you Wolf, speak about when you pounded the stairs saying"it's so hard!"
    I just sobbed in the corner of my couch and thought "I can't do this anymore. It's all too painful"
    I have an acronym for how I feel. . I call it HOLSST for heartbroken overwhelmed, lonely, sad, scared and tired.
    I just closed my eyes and prayed for serenity, peace, strength to carry on.
    Katherine described it as feeling it and then she carries on. I guess that's what happened.

    I slept for an hour, woke up and went to pick up my DH. And carry on I did. Fortunately, he has been in his rare good,
    Calm mood the rest of today. I continue to pray for peace and strength and for all of us affected by this hideous disease.
    T
    • CommentAuthorWolf
    • CommentTimeMay 1st 2014
     
    I suppose I give up my macho image telling people I sit in a closet and cry like a little girl but I really don't care. I'm an incredibly rich man. I endured the hardest trials of my life taking care of my wife until I couldn't anymore. I lost virtually all connections and things I depended on during that time. Then I clung to the edge of despair with my finger nails for months and did not fall. And then I healed myself over two years and feel peace again feeding my poor wife who is still clinging to what she can have.

    It has been very hard and it still is. But now it is hard in the same way it rains sometimes and the truths of those hard moments is the testament to our love which was real and so really hurts.

    I'm picking these videos carefully. I know we are all at different places and I mean for the videos I put here to be a safe place but also that input of ideas at moments can be incredibly important.

    I've spoken in different places about the child within us and that that child hasn't gone anywhere - it has simply grown older and is engaged in different things now. I would describe that as being our true selves and not how we've learned to behave as an adult.

    When I was at my worst it was my true inner self that was concerned about me. My adult was screaming inside and peeing himself. Somebody had to help him and there was only me. I don't care how that sounds either. I happen to know most adults are screwed on so tightly they don't even know what I'm talking about. But many people do know that truth. Beneath the role, behind the marionette, behind the curtain there is you pulling the levers.

    The child we were did not die:

    http://www.youtube.com/watch?v=soTtPSn4iWg

    And being a woman does not make me weak:

    http://www.youtube.com/watch?v=fia4HY9pWuo

    Don't be fooled by the testosterone of men. Strength is in the soul. And true strength never uses a sword. It uses belief.

    And I do not post this thread to be inspirational. I am planting seeds.
  12.  
    Wolf, Lorrie I'm posting now to offer some encouragement. It came from Hospice grief counselors who provided me with the insight that I had to withdraw the emotional energy from my deceased wife and reinvest it a future life.. The made it abundantly clear that like you both I had grieved the loss of my wife for years prior to her physical passing, Their focus was that there was no need for additional penance and grief. Repeatedly I was told that after 7 years of care giving w/o a single respite I should be feeling a sense of relief she was finally free from her tortious pain laden existence and at peace. My counselor stated time and again that it was now time to place my love and former life with Sue in an appropriate place in my psychological and emotional life. They encouraged me to continue living. That It was now my turn! Basically, they advocated that I grant permission to renew a "normal" life. Initially I found their thoughts incomprehensible. I couldn't move on from the loss of my wife and best friend for 53 years until shortly after Sue's passing I discovered this note/poem hidden by Sue in a place she knew I'd never discover before her death (In my Tux storage bag)
    I've posted this before but believe many new members may find it of significance... It was the key that opened to gate to my discovering the joy of living again.

    I'M FREE
    Don't grieve for me, for now I'm free
    I'm following the path G-d laid for me
    I too His hand when I heard him call'

    I could not stay another day.
    'To laugh, to love to work or play
    Tasks left undone must stay that way:
    I found that place at the close of day

    If my parting has left a void,
    then fill it with remembered joy
    A friendship shared, a laugh, a kiss;
    Ah yes, these things, I too will miss,

    Be not burdened with times of sorrow,
    I wish you sunshine of tomorrow.
    My life has been full, I savored much
    Good friends, good time, a loved one's touch

    After reading this poem Sue had tucked away years ago , long before AD ravaged her mind I gave myself permission to move on. It is now six months after her passing I am in a relationship so wonderful I feel as if its a gift, repayment for the sacrifices I made in the past. A relationship where nearly every night one or the other of us says: "I never thought I'd feel this and we again" The hackneyed phrase, "live every moment as it's your last has taken on a whole new relevance, we do it!

    We can survive "the worst experience in human existence" You're right Wolf, the path is through the heart
    • CommentAuthorWolf
    • CommentTimeMay 4th 2014
     
    Thanks for sharing what they told you. It makes sense but they are really just trying to activate us to help ourselves. If we're not listening we don't respond and if we respond we don't need to listen.

    My mother was called the miracle patient by Credit Valley Hospital. She was there for almost a month for what was initially a twisted bowel operation. She didn't recover even though the operation was successful and slipped into a semi comatose state. She spent most of that time in critical care which is highly unusual. My sister and I were brought to a meeting with a variety of doctors and staff and were told she was getting weaker and if she couldn't rouse herself she would likely go into deep coma or slip away.

    We went to her and talked to her as we had before. This time I leaned right up against her ear and told her fairly loudly (she wore hearing aids) that we had just come from a big doctor's meeting where we were told that if she didn't wake up now and start eating she was going to die here. "Wake up! Fight for your life!" We yelled at her.

    The next day I got a call from critical care. My mother was awake. And hungry.

    Don't give up. Mom moved to London, Ontario after that to live near my sister. She did that because when she realized what was happening (because she could hear us), she responded by fighting for it.

    I think Marty and my mom as two different examples both shared what I call an epiphany. Some circumstance and time is like a divider where it's not black and white but it seems materially different on either side of the epiphany.

    An epiphany happens whenever we 'get' something. It can be as simple as a child recognizing themselves in a mirror for the first time and forever after 'getting' it.

    I believe there is such a blend of personalities, tendencies, and idioms that, just as Alzheimer's, when you've seen one case of recovery you've seen one case of recovery. We don't learn anything practical except that it is possible to recover from these experiences.

    Let me give you an example of personality, tendency, and idiom. Strong, combative, and charge ahead. Deeply catholic, extremely uncomfortable in conflict, and a sacrificer for the sake of immediate peace. Try this on characters on weekly television programs and you can help write the scripts. That's because there the subtleties of real people take too long to flesh out.

    The point is though that the more we understand the character the more capable we are of hitting targets and most of us have quite fleshed out ideas about that with the people around us (unless by personality we don't look into people).

    This expertise literally comes apart though when we're talking about ourselves. Then insightful people can best be described as blindfolded children hitting themselves like a piñata hoping magic falls out. Sorry, but those are the facts.

    One of the hardest things I have found to get people to describe is what they really want. Are we afraid to make a choice? Is it because we are afraid or because of the choices? What are those choices really? Have we really looked at them?
    • CommentAuthorWolf
    • CommentTimeMay 4th 2014
     
    -part two

    One of the underlying motifs on this board hasn't been articulated much. The reality and power of resistance and attraction (just like in magnets or electricity).

    When we notice and are diagnosed and go through the decline we are defined by resistance. We can alter the word resist to a variety of other words like fight or help because we're not talking about reasons. We're talking state. We overlook the early changes. We resist the diagnosis because we need time to absorb this. We resist the disease by helping them. We resist by steadily erasing ourselves. We resist by facing more and more challenges to continue. We resist dwelling on future. We resist all creatures' need for hope. We resist our disgust to pee and poop. Is that enough?

    And then they die. And now we shouldn't resist grieving however mangled that deep emotion might be.

    And what do we have to face the future with? A doctorate degree in resistance. An eradication of ourselves which we blowtorched to stubs over the years we couldn't afford to think that way. A lost period in our lives. And a certified period of extremely unhealthy levels of stress.

    The underlying motif not articulated is necessary because the board exists to help people through this. Alzheimer's support is not sufficiently envisioned to include recovery (attraction) which I have said numerous times. That's a crying shame because it's a waste of life.

    I know about support groups which I would describe as people trying to help themselves in groups with common experiences. Everyone who reads the board should understand the value of that. None of those things are at the level you have to reach here in my opinion.

    Imagine a very long but gradually narrowing tube which you walk into for years until you have to hunch over and then bend and then crawl and then slither until you are a widow/widower. You're told that by slithering further the tube will start opening wider (which it does over time at an unknown rate).

    In an epiphany the tube disappears (emotional/mental burdens feel lifted) and the person stands up because it really does feel different. It feels different because feelings are mental states just as the 'tube' is. Both states are equally real or unreal depending on how we look at it.

    That's where personality and seeing ourselves come in. Too many will continue resistance in the form of continuing as best we can and on the physical level that's necessary. But you are not depression and yet you have it. That's what Marty learned IMO in a different guise. It's different for everyone in some ways. But it's also similar enough to what my mother learned that day. She thought her state was normal and then came to believe it wasn't so she woke up.

    Notice that the key is always that we learn something and then change what we believed. For me that's a very long walk through things and I can't help notice that while plaque is covering the synapses (memories of specific things) of my wife's brain, I am actually rewiring mine slowly.

    If the emotional and mental damage we suffer were visible like wounds inflicted on a battlefield no one would treat us this way. Don't you either. Identify one thing you like, one thing you want, one thing you would like to do, and one thing you are proud of. There. That's a start. I'll give you some goals now. Show your work. Feel bored in a good way. Smile at something amusing. Feel sympathy towards something without caving inward. Feel that love is good when you see a couple in love. Care about how well you're doing something. Learn something new. And finally, be nicer to yourself or promise yourself that when you have the chance, you will be.

    "I would want you to be happy" they said. Not a slug. You have to re-learn to want after years of learning not to. That is how the tube widens.
  13.  
    Wolf I have thought of your fabulous metaphor for days...

    "Imagine a very long but gradually narrowing tube which you walk into for years until you have to hunch over and then bend and then crawl and then slither until you are a widow/widower. You're told that by slithering further the tube will start opening wider (which it does over time at an unknown rate).

    In an epiphany the tube disappears (emotional/mental burdens feel lifted) and the person stands up because it really does feel different. It feels different because feelings are mental states just as the 'tube' is. Both states are equally real or unreal depending on how we look at it."

    I copied those lines and read them to my psychologist yesterday. They were the springboard for our visit and incredibly helpful.

    Although I am not yet a widow, I do feel as if I have emerged from the tube and am standing tall with my arms outstretched and the sun shining on me. That is where it stops though as I am unclear of who I am now and how I want to spend this next chapter of my life.

    I am not concerned about the lack of clarity...am trusting it is a process and I will be compassionate with myself to gently figure out now how to care for me. I found tremendous energy and resources to ensure the best care possible for my husband and he is in a great facility. Now to shift focus and try and find me again.

    Someone in another thread mentioned "I miss me." So true. I am a completely different person though since dementia, however, there is a core of me I look forward to reclaiming. I will "re-learn to want after years of learning not to." How welcome is that!
    • CommentAuthorWolf
    • CommentTimeMay 11th 2014
     
    That sounds good Katherine. It's a longer road and get yourself some kneepads. If you're anything like me you'll be down on them every once in a while. Is it ever a goal worth pursuing though.
    • CommentAuthorWolf
    • CommentTimeMay 11th 2014
     
    We don't really know what anyone else goes through. It's only in the last three days that I'm realizing at a deeper level that all my talk and work these last 2 1/4 years has diminished the negatives in my life that were then consuming me - but I have done nothing that I would call living, I have planted no seeds anywhere, and the truth is I am mostly about trying to protect myself from more pain by keeping my world small.

    We don't really know what anyone else goes through. No one knows how little I want life without her. I was given so many gifts I didn't earn. Now I have to work so much harder than ever before to get the thing I have no real interest in. Genuine investment in my future. The elephant in the room I have completely ignored.

    I'm achieving my bucket list. But it is still fake. I do it because I should and doing things does open up new thoughts and conversations. It's one of the main roads I'm quite sure. I'm going to continue to push out because the truth I don't think I've ever told is that I don't know what I would have done if Dianne had passed when I was so overcome. I do know now that I can survive her death. That my friends was the real bucket list and all my antics on the Spouse in Residence thread.

    One of the gifts I was given was an innate understanding that unless you're planning to make babies, it really means squat what another person looks like. Another is that I can spot deceit from a hundred yards. That's relevant to this next video. Meryl Streep could transition the face when told about the $40,000 and then that it's just one year - but few actors could. I always monitor for genuiness and for content. The risk I leave you with is feeling emotion.

    The seeds I'm planting here aren't just for you. They're also for me. In simple terms I fought the bad negatives; but I'm having real trouble with good positives. I can't be the only one which is why I started this.

    https://www.youtube.com/watch?v=lK1vPu6U2B0
    • CommentAuthorWolf
    • CommentTimeMay 25th 2014
     
    Faith. I swim for days in the empty ocean without seeing anything. I don't swim for me. I swim for her still to feed her, and watch over her, and pay the bills knowing her neverending death is harder. I've written volumes about readying myself for my own life and I believe it is faith in it's purest form that powers us forward.

    I believe that any one moment of penetrating faith is like hands lifting our burdens or showing us what we ourselves decide matters and whether it's the Lord, or Allah, or life itself we denominationally belong to the act of placing faith in any thing is in my mind the purest form of being.

    Jennifer Lawrence is IMO an example of such a recent lightning rod. She learned to act watching television and aside from her role in Hunger Games, she is an amazing actor. It shakes all those that have studied hard in recognized schools; but, her talent to convey hundreds of subtle emotions all inherent in her character is stunning. She's othewise a dumb blond from a good family with strong principles.

    One of the places I scan for faith is these talent shows almost every country now has. I feel deeply for those who have the bravery to be called but are not chosen. I can from this also see how deeply we weave our own perception. Some of the contestants really should have been told by someone who cares about them that they stink and it's going to be embarrassing. Instead I've seen dozens of people who did some awful garbage stung by the lack of appreciation. We are all deeply inside ourselves. With what we here are enduring that can be a dangerous and edgy thing.

    Why is this link an example of pure faith for you Wolf? Because she is not afraid. She is here to sing. She knows already she's going to sing well because she's done the work. Her father offstage knows too. Watch her face for a sign of her watching herself on stage. There is none. This is in Holland and they interpret it as "an old soul" continuing on in this child. But their mythology like all understanding is the means by which they interpret continuance. But God by whatever name reveals himself. We are free to look into his universe and how it works. Almost as though the soul is meant to learn. That's just my opinion.

    This was another such moment for me where I place a marker about what life means to me. Like a bouy marking a spot where once again I was in awe of the theatre and the power of life. Not to continue swimming. I'm strong now and am in the moment. In my mind strength has little to do with faith though. I know how to endure. I'm looking for why.

    https://www.youtube.com/watch?v=8LsNJmwH2WA
    • CommentAuthorWolf
    • CommentTimeJun 14th 2014 edited
     
    Friends and family:

    One of the harder things for many of us is the behavior of those around us when dementia strikes.

    About this topic we know two things. One is that it's our lives that are changing drastically from the stable orbits of how things were before. It's us, how we see things, what we need then, and what we can do that is what's changing - not them.

    The second thing we know from being on this board is that almost all of us have this experience, where of those around us many behave in very disappointing ways. That is so consistent that it has to mean that people have a very hard time dealing with this disease wherever we physically are, whatever our religious beliefs, whatever our financial circumstances.

    Being angry at retarded people for not being able to interact normally is as functionless as being angry at the way humans everywhere behave. Humans everywhere behave like this around dementia. It has nothing to do with you that the tribe is pushing you away.

    This is important because it is so hurtful and we go through enough hardship already but the truth is we are also having a very hard time dealing with dementia so it's not suprising that they do. It doesn't excuse anything. It's not a justification. It's still abysmal behavior. It's just that of the half dozen bullet points anyone can give you on diagnosis two of the points would be that it's going to keep getting worse and those around you are going to have serious issues dealing with this. Both are going to happen.

    I have no interest in them. My purpose is to empower you more.

    Gravity happens. It's not personal. Pigs don't fly. It's not personal. People are going to do the opposite of rally around you. It's not personal. You could be Gunga Din and be purple and if you get dementia they will still do that.

    So as the disease becomes evident to others where our hardships have been increasing long before and we are becoming more isolated by their nature (eg: spouse can do less things), our friends and family become increasingly hurtful and disappointing.

    What's more accurate is that dementia damages many things including our relationships with others. It doesn't matter who you are that's what's very likely to happen. Dementia breaks previous trust. That previous trust was likely well founded in normal circumstances but doesn't hold in this much change.

    They are still living in normal circumstance. It's we who are not. They still see the world they way they did last year and five years ago when there has been no catastrophic continuity break. Our world has been transformed. We have no hope with this disease, it gets harder by change and by how long we have to endure, and our legitimate needs go through the roof.

    When I look through my own experiences for intent I can't find it. Was there ever anyone who wanted to hurt me, who was enjoying this, who used it? No, I'm quite certain. It was almost universal that they were protecting themselves from too much information or involvement, that many were very uncomfortable, that some denied it was happening, and that none of them saw themselves doing that. In fact they generally felt the opposite. That they were being supportive. They were outside their comfort zones and that's giving.

    It's also clear this is specific to the type of disease. I've lost 4 friends now to cancer. I was involved with 3 and each time the majority rallied around quite strongly. Only some didn't likely where those didn't want to think about death. But with us it is custom to not ask how my wife is - which would be unbelievable if it was cancer. Everyone always asked each other.

    It took me some time to understand. It did no good to tell them. It had nothing to do with me. It's the limits of humanity we are looking at. Dementia is outside those limits.
    • CommentAuthorWolf
    • CommentTimeJun 14th 2014
     
    - part two

    If we are filled with rage and hurt by how we are treated then we are Don Quiote bashing uselessly at windmills. Almost everyone is treated this way by almost everyone when dementia is involved and it has nothing to do with us specifically or our specific hurt feelings.

    I can fan any one of the old fires where there are many of them and get the coals going but that's just me fixated on old hurts that are infuriating that they can't be resolved because none of the worlds even intersect. What they saw was me telling them they weren't doing enough when they were already long outside their comfort zone.

    I'm not suggesting being mother Teresa. I'm saying with certainty that our battle on this topic is with human limits more than with specific humans. No one is trying to hurt you. This is what most ordinary people do everywhere to everyone who has dementia and it is you transforming to something more by your willingness to stick, your truth in duty, your very real sacrifices, and the facing of so many fears.

    Treat the zoo animals however you like. Come from this field with the truth. They are what they are. And so are you. I'm going to do and say what I please about how I think I was treated. I still have numerous sources of anger. But I don't believe in it's authenticity. I know no one was trying to hurt me. My friends and family don't know any better. They don't in New York either. Or in Australia. Or in Hong Kong. Your friends and family don't know any better either.

    I hate rewrites of history. They stunk period. But that's like saying it storms sometimes. It does. Let the air out of these balloons if you can. Not for the troglodytes. For you. We have enough to deal with without trying to change humanities limits by ourselves.
  14.  
    Thank you, Wolf.

    The timing for me to read these two posts could not have been better.

    I have been staggering around for months wondering about the loss of some, what I had considered great friends. I wonder, over and over, how could this have happened? How could they drop me like this and never inquire about me, let alone my husband. It is like we both died as far as they are concerned, or at least disappeared. I haven't been able to come to grips with the situation.

    I think you hit the nail on the head with, "It's the limits of humanity we are looking at. Dementia is outside those limits."

    Thank you.
    • CommentAuthorBev*
    • CommentTimeJun 14th 2014
     
    Thank you, Wolf.
  15.  
    Wolf
    Well written, insightful, heartfelt wisdom.....thank you for sharing . I've found myself disappointed, angry, resentful
    hurt....by some. I've also been so touched and grateful to those dear friends and family who are walking this path with me, understanding and caring beyond words.

    This is a disease that kills everything in its path..including some relationships. I agree it is beyond the comfort zone limits of many. It is just too painful to watch. Some must disappear for their own emotional survival.
    I struggle to accept this but I try.
    • CommentAuthorbqd*
    • CommentTimeJun 14th 2014
     
    Wolf, as usual your prose is filled with wisdom.

    I understand comfort zones, and phrasing it the way you have puts a much more positive spin on the loss of relationships than what keeps replaying in my mind - the anger and the hurt.
    It is hard to ignore such strong negative emotions, and realize that just as I am only human, so are the friends and family members who have reached their limit and can go no farther on our journey. Like Frodo Baggins on his journey, we might just have to take those final steps alone and hope that in doing so we come out on the other side and that life for us will be different, but that there will still be life.

    I am learning to be more grateful and openly thankful to those friends and family who have not fallen by the wayside but continue on this journey with me. Without them, I would have no hope.
    • CommentAuthorWolf
    • CommentTimeJun 29th 2014
     
    "Don't Let It Bring You Down"


    Old man lying
    by the side of the road
    With the lorries rolling by,
    Blue moon sinking
    from the weight of the load
    And the buildings scrape the sky,
    Cold wind ripping
    down the alley at dawn
    And the morning paper flies,
    Dead man lying
    by the side of the road
    With the daylight in his eyes.

    Don't let it bring you down
    It's only castles burning,
    Find someone who's turning
    And you will come around.

    Blind man running
    through the light
    of the night
    With an answer in his hand,
    Come on down
    to the river of sight
    And you can really understand,
    Red lights flashing
    through the window
    in the rain,
    Can you hear the sirens moan?
    White cane lying
    in a gutter in the lane,
    If you're walking home alone.

    Don't let it bring you down
    It's only castles burning,
    Just find someone who's turning
    And you will come around.

    Don't let it bring you down
    It's only castles burning,
    Just find someone who's turning
    And you will come around.

    It was written by Neil Young but it was done beautifully by Annie Lennox. We all have a limited time. Don't let it bring you down. Find someone who's turning and you will come around.

    https://www.youtube.com/watch?v=xicsALcqoN8
    • CommentAuthorWolf
    • CommentTimeAug 3rd 2014
     
    Short two minute thing filmed at the Budapest zoo. It's called Crow Rescue. Humans are too fragile to get it. Animals don't kill each other unless they have to and can become great friends. Even passersby might help someone down on their luck.

    https://www.youtube.com/watch?v=gJ_3BN0m7S8
    • CommentAuthorWolf
    • CommentTimeOct 4th 2014
     
    I've always said if you're passing a piano, sit down for a few mintues and plunk away. You never know which talents God gave you if you never look.

    https://www.youtube.com/watch?v=PiRPsf3ZolU
    • CommentAuthorWolf
    • CommentTimeMar 14th 2015
     
    "Something To Believe In" - Parachute

    You wake up every morning looking for your answer
    You're waiting for your sign
    While Jeremiah's on his way to tell the people
    But you watch him pass you by

    You walk the streets at night still looking for your reason
    But you don't wanna try
    You swear the world has got you backed into a corner
    But no one holds your hand to walk into a fight

    You swear the light is gonna find you
    But it can't find you when you're waiting all the time

    You say, "keep my head from going down"
    Just for a little, just for a little
    Watch my feet float off the ground
    Just for a little, just for a little
    Love, if you can hear this sound
    Oh, just give me something, something to believe in

    You spend your days alone still hopin' for the truth, oh
    But all you hear are lies
    But no one else is gonna tell you what to do now
    No one else is gonna help you hold the line

    Sometimes it's hard to keep on living
    But you're the one who's got to know just when it's right

    You say, "keep my head from going down"
    Just for a little, just for a little
    Watch my feet float off the ground
    Just for a little, just for a little
    Love, if you can hear this sound
    Oh, just give me something, something to believe in

    Love, come take me now
    Love, come take me now
    Love, come take me now
    Love, come take me, take me now

    Come take me, take me now
    Come take me, take me now
    Come take me, take me now
    Come take me, take me now

    You say, "keep my head from going down"
    Just for a little, just for a little
    Watch my feet float off the ground
    Just for a little, just for a little
    Love, if you can hear this sound
    Oh, just give me something, something to believe in

    https://www.youtube.com/watch?v=zyVZ4uVHYRw&feature=branded
  16.  
    Nice groove.
    • CommentAuthorWolf
    • CommentTimeApr 2nd 2015
     
    Mariana VanHoose. If she can, I can.

    https://www.youtube.com/watch?v=JfOfBbe2Mi0
    • CommentAuthorWolf
    • CommentTimeAug 1st 2016
     
    I know something of the alien land we struggle to survive. Not just to survive, but to continue in the duty that crushes everyone who dares to hold true. And what does that mean? It means that while we are faced with isolation and hardships beyond any normal experience, we keep trying to find ways to go on in it. If what the people who come through these gates do, is not one of the noblest things humans do, then nothing is.

    When I was one of you I feared whether I could make it through. I feared whether I would ever feel like myself or have anything good again. I feared for my own sanity at times and I remember clearly how far caregiving for a long term fatal illness beat me down, took away my hope, and crushed everything as thoroughly as if it had been a very, very slow tornado. The damage to my life and to me in it felt overwhelming.

    Recently we heard of the tragedy of a caregiver hanging themselves in despair. We were reminded of the extreme actions taken in despair. No one has to teach us what despair feels like. No one has to teach our spouses that either, because at some point there was or is a transition point where they also understand that what is faced here has no hope.

    But that's not the whole story. There is another chapter that begins with a funeral where our spouses are released from this disease and we enter a different, also difficult period.

    And that is not the whole story either. Because most caregivers do come away from the worst of this in their time and have stories about how their lives moved on. Life can move on even when we don't remarry or move or travel and just grow out of it anyway.

    What was unimaginable is now all around me and even though I walk on eggshells somewhat and my world is still fragile (too much bad news too soon will evidence that), I live in an ordinary life that feels that way from the minute I wake up in it to the minute my eyes close and I fall asleep. This feels like my life and these feel like my choices and my struggle isn't to make them as much as to figure out how to make better choices for me.

    Can you get through all this and have a meaningful life again? Yes you can, and without any extraordinary powers or actions. I feel detached and lonely and I feel sad and the tug of our grief; but, they don't feel as powerful as I feel and a quick glance around shows that there is only one steering wheel and it's right here in my hands. That's what I know when I get up and when I go to sleep. This is my life. It's mine to do as I see fit and I can do things.

    Wait. It gets better. I keep notes. Those notes show what I thought in all the moments I wrote something down and shows a very clear transition from "I will never feel good again" to "eat more vegetables". You know those storms that knock you down? Not happening anymore for some months now. My future when you extend that line on the graph is brighter still because I am very probably going to feel better next year than I do now.

    I know that it's very hard to believe in such things at times. I lived that and I did give up and I did lose faith. In fact I rolled around on the floor sobbing for myself and went into tirades that would make screaming banshees run and hide. But I am here anyway and so will you be one day. Don't just listen to despair. And if you give up or lose faith, get back up again. It's what you're good at already.
  17.  
    I'm pretty much in the same place Wolf is, I think. (Don't think I ever rolled around on the floor and did tirades--I was more the type to stare sullenly at the Depends and toothettes while eating a whole bag of Lindt assorted truffles and overdosing on tea.) As I read the hair-raising posts now on the different threads by people who are smack dab in the middle of the storm--and no relief in sight--I am wracking my brains for how to help. From my vantage point now, very isolated but working hard with the Julia Cameron book to figure this out and find a way forward...I have just a couple thoughts. First of all, I agree with so much of the good advice about trying to plan as early as you can. Get the finances in order--make sure you have the legal right to control things--and investigate Medicaid in your area, probably by consulting a good family law/estate planning/Medicaid attorney. Start thinking about whether you want paid help in the home, a day program, placement in an assisted living, or wait until they need a nursing home...talk to people, look around, think very carefully about what you can do and what you can't do. Get a definitive diagnosis from a thorough neurology work up. Words like "dementia", "organic brain syndrome", "senile" are just catch all terms that don't mean much. Is it Alzheimers, Lewy Body, Frontal lobe, Parkinsons dementia, multi-infarct, Early-onset...whatever. But this has all been said, and part of your essential planning has to be to plan for yourself, too.

    I think you as the caregiver need to plan as early and well as you can to try to save yourself. The knee-jerk advice from everyone is that we have to take care of ourselves. Yeah, yeah, yeah. We get it. But the problem is, it's almost impossible to do. I think whatever steps you can take to guard your own physical health should be taken--maybe you can still get out of the house for a walk everyday, or a gym session--so do it while you can, because in the future you may not be able to. And I think if you don't already have an interest that you can pursue at home or anywhere really, that it might help to find something. Whether it be mindless and soothing, or something that engages your brain, try to have something. I became a great reader of paperback fiction, because you can pick it up, put it down, take it anywhere--like the ER or the doctor's office. I was able to work on a degree online in the earlier years, but there are online courses like the art, needlework, and different crafts on Craftsy.com that might help...also language courses on sites like Babbel.com. I think, looking back, that if you can hold on to crumbs of yourself while the tsunami is hitting you, you will then have something to build on afterward. (I have computer skills I never would have had otherwise, and actually talked French to a kid on the road last night who said I really spoke well. Not true, but nice of him to say it. And I can do pencil sketches of my coffee cup. Wahoo. Would rather still have Larry around happy and healthy, but hey...since "our good times are all gone, and I'm bound for moving' on" , it's better than nothing.

    I was just looking at my old passport picture from ten years ago, my drivers license picture from three years ago (when he was still alive), and my new passport picture from three weeks ago. God, what a change. I just look like someone who got run over by a truck...not so much my looks, but you can see the grief and unhappiness written all over me in the latest picture. OK, to be expected...but I am determined to smile more, put on brighter colors, makeup and jewelry, and look for happiness and joy. Al Z. Heimer is not...repeat, Not...gonna get me, too. In one month it will be two years since Larry died. I swear to God I am going to make something of my life. It was so about him...and it had to be. So many of you are in that place now that my heart just breaks. But hang in there--it won't be forever. You'll be changed when you come out of it, I think, but no matter how impossible things look now, there is a future with many good things waiting. I just know it...because I'm living it.
    • CommentAuthorCO2*
    • CommentTimeAug 2nd 2016
     
    Amen Elizabeth.
    • CommentAuthorbhv*
    • CommentTimeAug 3rd 2016
     
    Thanks Wolf and Elizabeth. I keep wondering... what if there is no after? But there is nothing I can do about that. I will try to keep thinking there might be an after.
    I am so grateful for the internet. imagine what it was like being a caregiver without it???
    • CommentAuthorCO2*
    • CommentTimeAug 3rd 2016
     
    Bhv, I always wondered too if it would ever end. I finally learned to stop thinking about it because the thought was so depressing that I could hardly function. There is an after and it is true we have no control over that. I think for me it was the control part that was difficult to deal with--the sense of powerlessness. I guess there is a lesson there of some sort for all of us.
    • CommentAuthorWolf
    • CommentTimeJul 24th 2018
     
    Not giving up hope doesn't mean we're not hurt by the things that are happening to us, or that we aren't knocked over or traumatized by them. Even things like senseless spam on our place of community can hurt us when core threads of our meaning are unraveling while more is demanded from us.

    I lost all hope and I even lived for a while with suicidal thoughts. I don't have a faith that supports or comforts me. But I found my way through and with no small part played by the good people on this board (or other such places), and so can you.