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    CO2* I am very happy to hear that things are improving for you. For me it is the emptiness of his presence, but I am so glad that his confusion and suffering are done and he can rest at peace. There are so many of us on this board who have gone through this this year, and, as you say, I have a lot of company on this journey. On thinking back, I could not deal with the sadness in order to deal with the problems with the home and the police and the city. There are times when I have tried to let go and feel the sadness, but the pain of it makes me think I will have a stroke or a heart attack, so I have to get busy with something. I have started a grief counselling group, and that should help. As you say, one day at a time.

    Elizabeth - thanks for the (((((( ))))))).
    • CommentAuthormyrtle*
    • CommentTimeFeb 22nd 2016
    Elizabeth, What are you going to do with the dog when you take your trips to NY, Ireland, and Montreal?
    • CommentAuthormyrtle*
    • CommentTimeFeb 22nd 2016
    Oh dear! The limitations on travel are a disappointment - I was planning to live vicariously through you for the next several years.
    • CommentAuthormyrtle*
    • CommentTimeFeb 24th 2016 edited
    Elizabeth, Traveling somewhere else will not be possible for several years, as my husband is still here and I'm still working. Anyhow, staying put for so long has diminished my desire for travel. I know what you mean about having an animal in the house and I think "companionable" is a good description. My cat recognizes the TV remote and when I reach for it, she settles down near me and faces the TV. She has told me that her previous human mother watched a lot of TV. (On another thread I hypocritically said I thought it was strange to talk to inanimate objects but I talk to my cat all the time and even hold up her side of the conversation.)
    Myrtle, I talk to my dogs (particularly Missy) all the time and answer for them too :-).

    • CommentAuthormyrtle*
    • CommentTimeFeb 24th 2016
    Like you, redbud*, I have found that some animals are more talkative than others. My two orange boys (now gone from this world) were not nearly as talkative as this new cat is. (Of course, that may have had something to do with the fact that I had my husband to talk to for much of their lives!)
    • CommentTimeFeb 26th 2016
    A few thoughts:
    A historical novel would be easier to sell.
    Many major publishing houses are interested in acquiring them.
    You pretty well have to have a real-live contact person in Hollywood to even get your screenplay read. Not all accepted screenplays go on to production.
    You can use what you learn about screenwriting to better your novel.
    A best-selling historical novel could always go on to be a screenplay.
    None of my business, I know. Just thoughts.
    • CommentTimeFeb 27th 2016 edited
    They won't sell in the drawer. I'd choose a publisher whose books I liked, or who publishes books similar to mine, and get it out there. So much depends on a good editor. You know you have something of value there — a good editor will help you bring it out. Note the repetition of the words "out" and "there." Best of luck.
    • CommentAuthorWolf
    • CommentTimeApr 17th 2016
    I've just read through it all start to finish. It's all here in it's raw form like reading someone's diary as intended. My last post was December 31 and I'm ready to put down some thoughts now that it's clear to me this experiment ended some time ago.

    I was right that I didn't have to approach grief as a victim or an accomplice.

    I was right that caregiving made me more than before and that I can access that and use it regardless of what state I'm in.

    I was right that caregiving made me think like a victim and that that, and not grief, was the greater threat to me.

    I was right that the smartest thing to do was not make decisions and that a year later I would be thinking very differently. I do think very differently and it is a year later.

    I was right that I could identify caregiver effects from bereavement and that I could and should address those with a sincere healing goal.

    I was right that this experience is like any other in life where we have to face a very serious loss and that the type of loss is quite irrelevant in that and doesn't even have to involve death.

    I was right that it was my own personality that was at risk because caregiving is long term harsh abuse and that ultimately, that would be the most serious threat to me.

    I was right to listen to no one but myself even when it meant breaking almost every norm. I never listened that people didn't know what I was doing on this thread, didn't understand what I was saying, tried to talk me out of it, or challenged me that I was wasting my time.

    I was right that the hardest part is when you come up against the old limits of yourself and further change isn't rebounding - it's growth. Growing is more like losing weight or getting in good shape than waiting to feel better.

    I was right that all the things I could do during grieving wouldn't make me feel good and instead that the entire exercise was trying to reduce negatives in real ways while feeling bad regardless.

    • CommentAuthorWolf
    • CommentTimeApr 17th 2016

    The sad part is that none of this translates into a solution that works for others. I want that but I don't see it. It's all too inter-wired in our personalities, our outlooks, our own fear sets, the personal things we want and need, our own perceptions of what we go through, what it was worth, what this does to us financially, emotionally, and even how honest we are with ourselves or how bent or distorted our own self perceptions are. Everyone has these things and everyone's soup is unique because there are tons of things in the soups.

    I loved Dianne and our life together beyond any reasonable measure. Even if I just tolerated her it would still be a huge hole ripped out of the plane for some time. I don't really care whether others went through what I did. I was stripped of everything except wanting this to end and I spent several years as an empty shelled imbecile.

    I live to engage and always have. I didn't even miss that or realize it was gone. I'm sure squirrels were much more aware. I'm not kidding. EOAD never let up. I live now knowing that can happen to me. I prize the instrument of my mind above all else and somewhere inside me is a piece of real terror that I lived the nightmare of having that stripped away.

    I wrote about my experience in June of 2012 after putting Dianne into a nursing home in January where I finally went out to a cottage I've known all my life and could actually feel myself returning to me. I have an excellent memory and I can see the moment and what I said "so, you're still here are you?". Personality nuance hides under long duress and that's not a secret. Experiencing it so starkly was astonishing.

    I would still advise keeping notes about specific days and how you feel now if you are an active caregiver. I believe much of that is instantly transformed when they pass and becomes hard to access for many. I always found my memory vastly understated what my notes clearly showed. It took a change in thinking to realize I shouldn't rip at the thing my mind had a protective scab over. What I needed was a sniper rifle to pick off specific targets at safe range.

    For me guilt was a great battlefield. I wonder who can understand the sentence that I will never forgive myself for putting Dianne into a home to save myself, but I don't feel guilty about it. I hated that moment in Sophie's choice and I use it. She did not put her daughter to death - the Germans did that - she saved one and it didn't actually matter which one. We know this argument. I'm allowed to hate the choice I had to make even though I would make it every time.

    The behaviour of those around us was even more interesting with guilt. I still harbor both scars and resentments and I accept most go through this because we become lepers where it's ok to be outrageous and there's no need to address that during or afterwards when the Leprosy is safely gone. It's unfortunate that this experience moved what I always knew to what I now navigate with - that people everywhere are great but they're not that great.

    The truth as I know it is that my experiences made them behave a certain way and made me see their behaviour in a different way. Alzheimer's anywhere makes them squirm and run but just in my case it was all deeply personal and meant to wound when I was down. Nope. The truth of caregiving for alzheimers is that it sucks you personally into it's vortex because you are the only other person directly connected to the disease. That exacts a heavy price and turns you into a victim over years. That's why this role is always near the top of lists of things people don't want to do. You see things as the victim you are. Our family and friends stepping up would make it all more bearable, but it wouldn't change that much. No one tried to hurt me. They love me. Humans suck large at this and that is the only functional truth.

    They aren't the enemy. And throwing them away plays into the disease's hands. Set a date of two years after your partner passes and if you still feel the same way - then blast them. You won't and that comes with a guarantee 19 times out of 20.
    • CommentAuthorWolf
    • CommentTimeApr 17th 2016 edited

    The dearth of this type of work done to this date is appalling to me. It's simply dreadful. I have been put out about this for some time. Shame on this planet. It's inexcusable.

    How long on average do people stay on anti depressants? How many take pills specifically because of these experiences? How long did people feel they were grieving? How much shock was there and how long did that last? What stood out as being powerful influences that helped get you back on your feet. WTF does back on your feet mean or any other throwaway phrase.

    How much did opening this thread and talking a lot in the weeks and months after she passed help me? A ton even though I was mostly talking to thin air. "I'm not sure what we're doing here" someone wrote. Well I was. You talk to like, and you share bits of experience, and you are not alone - and there is no more healing balm in the year or two 'afterards' my opinion.

    Nobody asked me but if I were asked what the hardest part was I wouldn't hesitate. Active caregiving wasn't the hardest part. Afterwards was. Active caregiving hurt more because it was the active losing of so much. It was where my deep painpoints of all the moments we truly were betrayed and abandoned are. It was were all the moments we shared all her losses are. It was where 'we' died slowly. It was where I became isolated. It was terrible. Afterwards is more powerful for many I believe. It starts with shock and grief either of which incapacitates you. It trumpets finality you can't even hear at first through the din. Now they are here, then they have died. No brilliant mind imagines that.

    The need to endure cracks and shatters and all your purpose spills out. Whatever support there was to keep you going ends abruptly when you come home from the funeral. And in the maelestrom of one of the most powerful emotions humans endure the facts of our lives and the realities of our issues that oppressed us unendingly until a few days ago and the legal things to be faced and the impact on our lives yet to be fully realized all go floating by like cows in a tornado.

    Armed with Stockholm Syndrome and PTSD, anxiety and severe repression, we enter our single life the way a bag goes down the chute in a high rise. You can't even spot the depression you've had so long it's more ship than barnacle because grief is a roller coaster and makes even a phone call an emotional experience. Grief lasts for months and even years and nobody gets past mumbo jumbo telling you what you're going to face. You're going on a roller coaster though and no you can't get off.

    Caregiving sucks you in. Afterwards spits you out. You leave a world where everybody can meet a payment and enter one where nobody makes a deposit. You break down looking at furniture and clothes and bathroom utensils while your terror filled thoughts of the future go floating by like cows in a tornado.

    And for months every braincell you recover is swamped by the crowd of things that want to be resolved. Some people live in grief for years. Did you know that? Do you know why? Did anyone help? What can we do to avoid that? Who cares? It's your 'afterwards' and nobody makes a deposit. And you, my dear reader, are coming here to live - not visit, not endure - to live in whatever you make of it for the rest of your life.

    What if what I'm saying isn't true? How would you know? What other detailed testimonials will you compare this thread to? None. Elizabeth is also reaching into this blind spot. After that there are none. The sum total of information available to help you when you get here is nearly zero anywhere on the planet.

    What you are going to need to come out of this whole is a lot. The most knowledgable and trusted resource is right here. If it was me, I would open the category tab to include a recovery from caregiving tab and open that to topics. I would cover the spectrum of this experience but that is clearly just me and I've already made this argument. I know that many would be helped having a place of connectivity and belonging in the now where whatever trust there is anywhere has already been earned here.
    • CommentAuthorWolf
    • CommentTimeApr 17th 2016

    As for me, I feel like myself through and through. Not the happiest self I've ever been but this is me. I get where I am, I think. The serious stuff is gone, most of the negatives are gone or identified, and this time feels like now where the fact of Dianne gone and the fact that I'm old now are real but not oppressive. I value love. I don't mind shedding a tear here and there for years to come. I even like it. The fact that I miss it doesn't override the fact that I know intimately what it is because I lived it. I don't mind the thorns on the roses.

    Ultimately, I believe afterwards brings with it a test of our values and our principles and our outlooks in deeper ways than we speak of these things. We come to wrestle with them because they are the real things inside us that are wrestling with the tornado filled with cows floating by. I may have worn that out just now.

    I believe that facing ourselves and knowing ourselves are two things we tend not to do well or easily. I would include facing myself in facing that I'm here now and I would include wanting to know what I can do in knowing myself as examples. If we don't understand these things then we have more layers between us and our path to solving something. Just because I understand the truth doesn't change that I have the power to choose. I'm strong enough to be kind to myself at times and I'm strong enough to be supportive of myself. Offering healing and guidance to anyone is not a sign of weakness - even if it is to ourselves and even if it were exercised in full seriousness. I can get you pitch perfect on what level of seriousness is required. Exactly the same level of power as the voice that chides you. You would of course have to admit so you can hear that voice.

    I believe that wanting plays less of a role than learning what we want. I believe that all solutions you seek are inside you and none are outside of you. I believe you find things you believe all the way down and you stand on them. I believe every positive thing you do cumulates because the mind knows there are positive things increasing. I don't think it matters how small they are. I think it helps to keep the knowledge that you are a recovering caregiver grieving and that is a serious thing so a little tenderness for yourself. Kindness is one level but tenderness is a deeper level. I think it's important to absorb some things and let some things go no matter how small at first. I think it's important to want my life even by principle at first. I think it's important to learn to calm down and learn to manage moments better. I think it's important to have some milestones so that in the constancy of longer term grief, we can see some things are improving. And finally that my goal is to feel fine and try and have a little fun. First you get some feelings, plant them, add a little water and then tend. By all these things I came out and with that I'm wrapped up here. Good luck.
    • CommentTimeApr 17th 2016
    After our brief exchange of emails yesterday, you have been much on my mind. Your post today carries through and strengthens me. So I will “ride it out.”
    A thought of my own: whenever I’ve had to get down to basics, to the truth of a matter, and then have acted on it, there is a high price to pay. Or to put it another way, integrity is not cheap.
    Elizabeth I know there is not an option on this site to exchange private messages and if there were I would be sending you a lengthy note. Since this is public, please can I say briefly how much your posts mean to me and how incredibly helpful they are. I can relate in so many ways and thank you for sharing your life's journey with us.
    • CommentAuthorWolf
    • CommentTimeMay 19th 2016 edited
    Sorry about your daughter Elizabeth. The watercolors sound good.

    The thing about a hobby is it has a chance of drawing us in and becoming immersive if two things happen: we open up to it, and we keep wanting to open up to it. A good hobby draws us in when we allow it. Call it an interest then.

    It sounds pretty good overall. I'm sure it's hard.
    • CommentAuthormyrtle*
    • CommentTimeJun 2nd 2016
    elizabeth, Are you just staying in NY for two nights?
    • CommentAuthormyrtle*
    • CommentTimeJun 3rd 2016 edited
    By coincidence, this morning some people from Kingston, NY, were guests on a radio program on the NPR station out of Albany (which I prefer to our local NPR station). They were talking about many up-and-coming things in that area, including something called "Smorgasburg," which is a weekly open-air flea and food market. Apparently there is one in the Williamsburg section of Brooklyn and it's all the rage there.

    I have not been to Kingston, but years ago my husband and I spend a long weekend in that area. We went to the Dutchess County Fair, the FDR museum at Hyde Park, and the Rhinebeck Aerodrome, where they were flying antique aircraft. I could hardly drag my husband away from that. I'm a big fan of rivers and although I have a soft spot for my home river (the Connecticut), it doesn't compare with Hudson, which is magnificent in the mid to upper valley. My sister-in-law and her husband are on a cruise now of the St. Lawrence. That must be beautiful, too.

    I hope that Bandit had a nice stay at the dog hotel. It’s probably a good idea to get him used to staying there if you’re planning on traveling.
    SO great to read about your trip and home coming Elizabeth. I was wondering how Bandit did. Great!
    You and Bandit make me want to get a dog.
    Katherine, there are definitely pros and cons. For me, this is the perfect time and place to have a dog, but he takes huge amounts of time and energy, and of course is an added expense, too. I just find that the house is so much homier with a dog in it. (Also dirtier and smellier--he must have piddled on the den carpet somewhere and it dried before I could find it--the den smells like puppy piddle--and of course we must tear up every piece of paper we can find into little pieces--and chew on our sticks all over the place so little pieces of bark and wood litter the floor. lol)

    I was amazed yesterday evening when we went into the park for our walk, and he was simply refusing to walk. He was obviously nervous and antsy and wanted to go home. Very unusual. It was damp and a bit drizzly, but we walk in that kind of weather all the time. Anyway, there was a little rumbly thunder in the distance, so I said, "Oh, OK, I'll take you home." I carried him home (figured we'd get there faster, just in case) and checkd online--turned out there was a huge thunderstorm with winds up to 40 mph hitting just north of us. He must have known.

    I thought that was pretty good for a seven-month-old puppy--trying to keep both of us safe.
    • CommentAuthormyrtle*
    • CommentTimeJun 8th 2016
    Hi elizabeth, Moving over to this thread . . . I wanted to let you know that I took out a leaf out of your book and started to go down to my shed in the morning to get a peaceful start to the day. It's quiet and shady down there in the morning (like your porch, I'm thinking) and I'm really enjoying it. Of course, I don't play a musical instrument (although I suppose I could take up the air guitar, as my husband recently has) but I have some garden books down there which I can peruse.
    Is anyone watching the sky at night? Jupiter is extremely bright and beautiful...look for the moon, and then the bright planet just west of it. And Mars is still looking pretty good in the southeast, although not as huge and bright as last month.
    I am elizabeth*. I think one of the benefits of having a dog is getting outside morning, noon, and night, and all of the seasons. I survey the sky every night although I don't know astronomy very well.
    The ISS schedule is often printed out and taped to the refrigerator for reference. It fills me with wonder every time I see it speed across the sky.
    The night sky reminds me of the enormous size of the universe and how very insignificant my problems and I are. It helps to put my life back in perspective, I think, sort of like a chiropractic adjustment for the soul.
    Well, I'm off on a real journey "somewhere else". Tomorrow I get on a plane to Amsterdam and Thursday I'll board a cruise ship that will go to the top of Norway and back to Amsterdam in 20 days. Home late evening on July 6. I've been to Amsterdam a couple times briefly with Ron but this will be strange. I am traveling with a woman I met at dinner on my Alaska cruise last year. It will be "The land of the midnight sun" so no excuse for not enjoying the scenery in the Norwegian fjords. I have packed lots of layers.
    • CommentAuthormyrtle*
    • CommentTimeJun 13th 2016
    Elizabeth, By coincidence, I'm reading a Jan Karon book right now (the one set in Ireland) after years of forgetting about them. Your stories sound interesting. I have always liked books that have a little map in the front.
    Well, my scritchy-scratchy little map is in a wide rule, 70-sheet school notebook. I am placing my little houses there, with all my made-up people. There is Mary Ann Lindsey, the well-meaning but bewildered everywoman, the environmentalist Philomela Morel and her hippy tenants, Dorcas Duboise, one of the last of the Hudson river aristocrats, living in in her decaying mansion, the Limburg clan, shockingly full of social problems and spread out among several deteriorating mobile homes...oh, let's see...there is a young family, a senior facility...places of business, a library, a couple of churches, a gas station, a grocery...and so on. All just slightly funky and quaint, but very, very scenic in the beautiful month of June in Bard county. Right now Bearkill is a joy, with the golden morning sun lighting the yellow-green of the leaves and dappling the grasses underneath with shadows as the cool breezes blow across the lawns...just like here. lol

    Last night around 11pm I watched the space station rise up above the woods in the southwest, zip past the Moon and Jupiter, and keep going across the sky toward Mars--then disappear past Mars into the southeast. Wonderful to see.

    You can go on and click on the tab for the International Space Station, and then on the tab for Spot the Station Or maybe just key in
    I really like getting the emails for when it will be going over this location. It is a round, shining, white ball--the third brightest object in the sky when it goes over. It is just nice to see--feels sociable and friendly. Some of the neighbors said that they always go out and watch it, too.

    MaryinPA, will you be taking the Hurtigruten line?
    I have put together a "work day" that I am pretty happy with. It involves a lot of puppy interaction, of course, but I think I've finally been able to mentally feel that I've separated "work" from around 9 to 5 from "leisure" which is anytime from suppertime onward. So my "workday" must include memorizing one line of a poem every day (I've almost got "Lake Isle of Innisfree" perfect), and drawing at least one sketch in my sketchbook. (Most current is my picture of the garbage can in the park. lol) My harp must be tuned, fingernails filed short if need be, and a difficult "practice" tune played once or twice. Same thing on piano. So my poetry, drawing, and music takes no more than an hour...very quick...but it makes me happy. Then the bulk of my "work" time is spent on Bard County Chronicles. My sweet spot seems to be about four pages a day, written in longhand in a college notebook...with another college notebook for the notes that I make as I think of them. The next morning, I type the pages into the computer, and the cycle continues. I only do these things during the "business day." Around 5 or 5:30 I am "done" and while I may read, write, draw, or recite my poem to myself, it is only for pure enjoyment. I try to play music every night, but only easy, old pieces that I can do in my sleep without looking at the music book or sheet music. By 8 o'clock or so, Bandit and I are on the couch. My new guilty pleasure is Downton Abbey, which I've not seen except for season 1. Yes, I am totally hooked. It is like heroin. I finished season 2 last night on my Amazon Prime, and season 3 here I come! Wahoo! So days filled with puppy and my work, and evenings filled with fun relaxation. It's not too bad of a life, and even though I'm alone, I like my dog and everything I do. Yes, my "Journey Somewhere Else" is going somewhere!
    You are always a source of inspiration to me ... what a great thought to 'work', and then time off. Rene was like that ... when he left work, he LEFT it, and home time began. I forgot about that ... thanks for the reminder.
    If I was younger I would get a dog, but it's now past that time.
    Please know that, as you reinvent yourself, you inspire us.
    Just read a helpful book called "How to Be Idle" by Tom Hodgkinson. It is meant to be humorous--an antidote for our always-busy-go-go-go-must do-must work culture. It extols the virtues of getting lots of rest and sleep, doing pleasurable things, and spending a lot of time dreaming and doing nothing--a great way to relax, de-stress, and just savor life. It occurred to me that this book would be useful for many of us trying to de-toxify from the horrors of AD caregiving and bereavement, and trying to move forward into a new way of life. It is extremely well-researched and literate, while being funny and easy to read.

    Not everything in the book appealed to me--Hodgkinson likes to smoke, for instance...but so much of it was wise and self-nurturing--and there is a nine-page bibliography for further reading at the end. I felt it was worth the $5.00 I spent for a used copy on Amazon.
    • CommentAuthormyrtle*
    • CommentTimeJul 1st 2016 edited
    That's great, Elizabeth. I'm sorry you're so isolated, though. BTW, have you read the book, "World Made by Hand," by James Kunstler? It's set in the Hudson Valley in the near future but it describes a world without modern technology or conveniences. It might give you some ideas for details to put into "Bard County Chronicles." It's also interesting to read.

    I am still trying to avoid real life, which is just too painful. My focus every day is visiting my husband in the dementia unit. Except for those visits, my work, and my gardening activities, I live in another world. Right now, that world is "Brexit," which I have come to love. The subject is perfect for me - it is all-consuming and complicated and it requires me to learn so many unfamiliar facts, that it takes me away from my own sorry world.

    I don't know how I will survive after this is over. Something happened yesterday that stunned me. A medical professional suggested to me that after my husband dies, I might want to volunteer my time visiting people with Alzheimer's who live in dementia units. I was so stunned that I said nothing. In fact, I am still stunned.
    • CommentTimeJul 1st 2016
    Myrtle, I'm stunned reading this. So stunned I don't trust myself to say anything, either. You will survive, but not by following this *#*&*#$@+^ suggestion.
    • CommentTimeJul 1st 2016
    I don't know how to indicate swearing on the computer. I think Charlotte does. If not, forgive me, Charlotte. I figure that anyone who can handle repairs on a motorhome can do anything.
    • CommentAuthormyrtle*
    • CommentTimeJul 1st 2016
    mary75*, I think you did it correctly. Anyhow, I understood it.
    I'm stunned too. And angry. You are great with words, myrtle, and this jerk needs a wake-up call AND a kick in the seat. I will gladly offer my services for the latter.
    • CommentAuthorWolf
    • CommentTimeJul 1st 2016
    Stay strong Myrtle. I believe you can find your way through this misery and eventually to the other side.

    There are moments that feel overwhelming no matter how resolute we are and the thing about those horrible moments is that they pass too.

    I have spent a great deal of time these past five years avoiding 'reality'. I also spent years alone at home visiting Dianne and not much else. They both were reality and together they made perfect sense. I could not move on or turn in any way. I could only pass the time between the visits and the issues that came up. That was my job as I saw it and I still believe in that today.

    I was not escaping reality. What nonsense. I sought the balm that soothed the strain of my horrible real job. So are you.

    During all that time my sensibility was flayed raw. I over reacted to everything and fretted to death about everything and gnawed on every bone just like the terribly abused little beast I was. The cell door is always open. We choose this for greater cause.

    Besides, we've got your back. Look who's coming for dinner!
    Good grief, Myrtle, as many times as we've all agreed that most outsiders don't "get it", this is one of the most flagrant examples of stupidity and insensitivity I've seen in a long time.
    @#$%^&*@#$%^&* indeed.
    • CommentAuthorJazzy
    • CommentTimeJul 1st 2016
    What a jerk!!

    Right now my hubby doesn't want me visiting him at his residence. I am to take him out for coffee twice a week and I'm so happy to do it as I I have a terrible time when I go on the floor and watch this heartbreaking disease affect the other residents. I just don't know what I will do when I can no longer take him out. I keep praying for the strength to do it when the time comes. My heat just breaks for them every time I go on the floor.
    • CommentAuthorWolf
    • CommentTimeJul 2nd 2016 edited