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    • CommentAuthorWolf
    • CommentTimeFeb 10th 2018
    Hi myrtle, my Raptors slipped into first place in the east last night without playing when Indiana beat the Boston Celtics. My relationship with the Raptors may be an accessible metaphor for everything else we talk about.

    I've been in a nasty mood for about two years now. I believe it is a form of backlash from when I couldn't afford to be anything resembling or feeling like a human being. My issues go deeper in that everywhere (friends and family) when I DID try to act normal and talk about AD, I got torched and was abandoned. I know how Lepers felt. There's a long, long string of issues where I went back in my own mind and after the shrill and hysteria died down enough, I ripped through those issues until I had killed the echoes of what was said and done.

    That was a long lineup of actual things that happened mostly centered around me no longer willing to be the victim - which is good because I'm long out of people I care enough about to remotely be willing to be such a victim again. Within that lies my resolute unwillingness to remember her damaged without being labelled. Those are memories of what it did to her. They are useless in describing her and are their own false positives in remembering her.

    One of the many reality transformations x-caregivers face is the reversal of the commitment not to care about ourselves whatever we feel or face to keep going. Caregivers have to do that while in one of their weakest states; otherwise, they remain in victim mentality without function. Almost no one recognizes or admits this - as though not having conscious realization of a thing means there must not be a thing.

    To demonstrate what I mean, I sometimes ask in a religious discussion whether the person thinks Hindu beliefs apply to them. Of course not they protest. Then I ask the person if they think last judgement day applies to Hindus and they get mad because Hinduism is just a funny word but their beliefs are serious.

    Transforming from a victimized widower to a male living single requires barrier breaking redefinition of fundamentalism. Surviving widowerhood as a widower requires nothing more from me than to get through the days until they stop. Those are two very different things which only look similar from the outside but define what is going on inside.

    I've never done anything harder, more serious, more complicated, and less understandable in my life. I wrote here how indescribably tired I got of it all. I never felt hope or desire or faith that I might succeed but guile that I would survive my hated everything was resolute. That just kept me going. It was the labour of love, kindness, and endless patience that mattered. Getting the little puppy out alive and whole is still paramount to this day - even when all that garbage flying around at once has long been recycled or absorbed into the earth.
    • CommentAuthorWolf
    • CommentTimeFeb 10th 2018

    My only real advice to anyone wishing to change is that they're almost certainly confusing wrestling in life du jour with the fundamental and foundational requirements that produce core change. It's analogous to the overweight and the smokers who cast some thoughts out about what they think about that and come away knowing they're taking it seriously. I require no dementia to go around the compass of everyone I know and read about and watch who speak about change but can't show their work because it's commentary while they're up to their neck wrestling with life du jour. I wish every single one of them well. I know how that is.

    I said my relationship with the Raptors may be an accessible metaphor. I'm a fan. That means I get caught up when I watch them play. It took time to realize that meant I cared about something. I wanted more and learned I can watch other teams play and see the game differently. I learned that knowing more about those teams gave me more context and felt like more involvement. I started paying more attention to the theatre including the media pundits and the general manager's role and drafting and trade rules and it all seemed to enrich my long familiarity with basketball. I used to be a hockey fan. I became a Raptors fan while Dianne had Alzheimer's. Now I can see anyone on any team and it's 98% that I will know who it is and some of their history. My poor mother couldn't tell one black person from another. I don't even see that anymore and have no issues whatever recognizing one of the families to which I richly belong.

    Both Dianne and Dianne with Alzheimers are rich in stories about my life. Just as her wingnut parents are. Not were - are. Their stories ARE a rich part of my life. The fact that they're long dead is inconsequential to their continuing role as the stories of my life.

    So is Cora Lee Nichols. She lent me her fancy pencil case in grade two and then a few days later let me know she didn't like me chumming around with one of the other girls the way I was. I gave her the pencil case back and told her I should never have accepted it and that didn't mean she owned me. I felt used and frankly like a whore. I had taken the shiny thing as my due without consequence. Life isn't like that I found out. I was in love with Louise who was in that same class as Cora Lee. I didn't give a flying about Cora Lee. I took the case though and that's the reason I got into that conflict. Nothing to do with poor Cora Lee.

    Remembering the Cora Lee incident is life du jour. Understanding the lesson is fundamentalism.
    • CommentTimeFeb 10th 2018
    Wolf, it's good to see you back. I missed you. I'd started an email to you, but have been frustrated out of my mind with an erratic curser.
    • CommentAuthormyrtle*
    • CommentTime7 days ago
    mary75*, I take offense at that. I may be unpredictable, but I carefully watch my language when I'm on this site.
    • CommentAuthormyrtle*
    • CommentTime7 days ago edited
    Today is my 70th birthday and I woke up crying. After a bit of self-analysis, I realized that I see this day this as marking the end of the decade that was lost to Alzheimer's. What I'm mourning is that as a result of this disease, I'm a physical and emotional wreck and that my husband is not here to take care of me. He was clueless when it came to birthdays, etc., but before lost his mind to Alzheimer's, he took loving care of me every single day we were together. So I'm feeling sorry for myself. But I'm not going to apologize for the self-pity. I'm just going to wallow in it for a while. "It's my [birthday] and I'll cry if I want to. . . You would cry too if it happened to you."
    • CommentTime7 days ago edited
    Congratulations on your birthday, dear Myrtle. I'd take you out for dinner if I lived closer to you.
    Seventy is quite young (says she who'll be 88 on the 20th). You've many good years ahead of you. Hope to enjoy some of them with you.
    • CommentAuthorWolf
    • CommentTime7 days ago
    Happy Birthday Myrtle!
    Happy birthday, dear Myrtle--the unpredictable curser.

    It takes a while, but I think you'll find that you get very good at taking care of yourself...and building networks of support and back-up. Hang in there.
    • CommentAuthorRodstar43
    • CommentTime7 days ago
    Happy Birthday Myrtle. Enjoy it. One of my gransons birthday is Feb 12th too., his 24th.
    wish i could be 70 again, Ride my kabota and round up cows. No longsr can do that. AD took that away.

    The 70's, remember the music, now you can make some new moves your self.
    • CommentAuthorSass
    • CommentTime6 days ago
    Happy Birthday Myrtle!! I'm still in the fight but I remember my DH taking care of me too. He doesn't know how to do that anymore but I remember how it made me feel, so I can relate. Others who know better than me are also letting you know things can get better. I hope you did something that makes you happy today. Even if it was just a walk, watching a movie or just sipping on a nice cup of coffee. :)
    • CommentAuthormyrtle*
    • CommentTime6 days ago
    Well, thanks, everyone. Your messages really helped and I feel a lot better. Two friends emailed me that they're coming into town to take me to lunch on Wednesday and my sister wants to meet for dinner later this week. So I guess it's a good thing I got this out of my system today.
    • CommentAuthorNicky
    • CommentTime6 days ago
    Happy birthday Myrtle. Hope you have a nice day & glad to hear friends are taking care of you & sharing your birthday.

    My birthday is also this month & it will be the first time in 45 years that he's not in the house with me. I'll visit him at the facility & even if I tell him I know he won't really know.
    • CommentAuthorWolf
    • CommentTime6 days ago edited
    I had a strange experience today. I haven't used the car hardly at all these years and in the winter I'm only making short hops. Today my battery wouldn't turn over. I hadn't driven it in a couple of weeks and it could hardly turn over at all.

    In an instant I jumped back to my 'everythings going wrong' disbelief and felt that panic/anxiety Alzheimer's caregiving gave me. I slumped over the wheel feeling the dreadful alone-ness I've known so well and which still clings around all the edges.

    I came in strongly reminded of the insulation I live in which seemed necessary in the early afterward years, but have for part of a year now been revealed as my own barriers. I'm scared deep down to get hurt too much too soon because in all truthfullness I don't think I escaped more serious damage by more than the skin of my teeth. I was broken/kaput in every sense of that there is and when something unforseen slaps me hard in the face, I can jump right back into Klingon mode.

    But I phoned my next door neighbour whom I haven't seen hide nor hair of for well over a month and I know he's trying to find a job and is depressed, but I phoned an left a message that I could use some help. Minutes later he called me back and said he'd be over in half an hour.

    Let me explain. Half an hour means there's half a chance in two hours. I learned quickly with him to stop checking at the window because I was just getting exercise. Sure enough two hours later he phoned to say it would still be a while and then explained he and Tomato lady were putting his resume together - so we talked about that.

    Two hours later Tomato lady phoned to see if I had a computer. She needed to use word and I have that. I don't let anyone touch my computer. I said yes and the minute I did I had an unbelievable reaction. "We'll be right over", she said. About an hour later she called again and said she was coming. Half an hour after that she was at my door and I let her know that she was not to use any other programs or even save. I would do that for her because I was extremely fussy about my PC. No sign of my neighbour who was going to help me.

    To recap, I had phoned him at 10:30 am. It was now 3:30 pm and I was hosting Tomato lady who chattered all the way through but was fortunately obviously very comfortable on the keyboard. A bit later Tom showed up and we hooked up his battery charger to my car. We went inside and I heard his long tangled story about what he'd all been through and that he was hiring a lawyer for wrongful dismissal. It sounded like he has a case.

    A couple of times tomato lady came down to be reminded of what they agreed to say despite her notes. We went through some of the wording together and he asked me to be a reference. We talked about the prospect he has at the company he's applying to. Soon enough she was finished and I saved it for her and attached it to an email and sent it to him, her, and the neighbour across the street who has a good printer.

    By then, my battery had about an hour of charging and I started it up. While I let it idle for a few minutes, I remember that I also own a battery charger and even know where it is in the basement. When we were alone because Patti (tomato lady) was putting her boots on, I told him I saw the eyes rolling but that he was actually lucky and pointed at myself. He nodded and unplugged his charger. They waved walking back next door.

    While we sat in the kitchen talking, I sat where I never sit and noticed things I never notice. "Look, I'm part of the community", I joked to myself after I had this wave of disbelief that they would ever leave. Listening to either of them is like standing in front of a fire hose of stream of consciousness hoping some of the bits form some kind of narrative.

    As the garage door set I smiled at myself that that was exhausting, but I'm not alone out here. I'm surrounded by other wingnuts and I fit right in. I really did feel that bite of being so alone in everything. I really did feel that panic. I really did reach out and along with the battery boost I needed, got to rent a family for the day. And then I got to give them back. And when that garage door shut, it wasn't a lonely world. It was wonderfully peaceful.
    • CommentAuthorWolf
    • CommentTime2 days ago
    I woke up this morning and remembered I've been through something like this before.

    When I was 17, half way through grade 12 (1-8 was public school, 9-13 was high school, and 3 years for a basic bacelor), the catholic school board decided to build where our house was and expropriated us. Mom and dad bought a new house many miles away from the Toronto street I grew up on.

    It was a nice house up from semi-detached but had no trees because it was a new suburban development. Going there was like my alzheimer experience because that one thing pushed me way out of my normal life into something completely alien.

    Want to come over and play? Sure. I'll take the Kipling bus from one end of it's run down to the subway, take the subway over to Jane street, and take the Jane street bus up to the old neighbourhood. I'll be right there.

    That's exactly what I had to do every morning and every night just to finish grade 12. I spent three hours on buses and subways every day to complete that year and was told I had to transfer to the local high school to finish grade 13. Except Dick Aldridge, a local sports hero in the CFL (Canadian Football League) was the senior basketball coach and he knew I didn't want to switch high schools in my last year, pulled some strings and got me exempted. I'll never forget his phone call telling me I was going to play for him.

    So, when I exchanged valentines with Dianne on Feb 14 1969 both in grade 13, the only reason that had a chance of happening was because I was travelling 3 hours a day to play basketball because my coach wanted me on his team and took steps himself to make that possible.

    That summer between grade 12 and 13 felt like this. DIsconnected, alienated, a fish out of water, and powerless to change anything I faced. Until I got that phone call asking if I wanted to finish high school in my old world. YES!!!!

    Thus Dianne, thus Alzheimers, and all the rest. She died tomorrow three years ago which I think is why I remembered this now. It was all well worth it. That summer dad bought me an old car he fixed up so I could get to university and getting around improved immeasurably.
    • CommentAuthormyrtle*
    • CommentTime2 days ago edited
    Wolf, My condolences on the third anniversary of Diane's death. I hope you'll be able to get out a little more frequently in the coming year, if for no other reason than the fact that your car clearly needs it.

    I can hardly believe it's been almost a year for me. The time has seemed to go by like a flash but my own life has not progressed much at all. I seem stuck back in the time when it all happened. His picture is still on the fireplace mantle next to the folded-up flag and a lot of his clothes are still in the closet. Yet I see others on this board moving ahead with their lives, traveling, moving to different areas, etc.
    • CommentAuthorCO2*
    • CommentTime1 day ago
    Wolf, congratulations on reaching this milestone. It will be 3years for me in May of this year. As I tell everyone who asks how I am, I tell them some days are better than others. Myrtle, it sounds like you are exactly where yiou need to be in your grieving journey. Every persons story and journey is different and unique to them. The first year I was pretty much numb and stayed in my house— it was hard to go the family gatherings and I pretty much did not want to be around people. you may want to check out bereavement groups in your area. I attended a 5 week group the fall after he passed through hospice and a 6 week group the following spring through my church. They helped immensely. Just being around people who understood what I was going though was just what I needed. Also being in a bereavement group is a place where you have permission to share your pain. What they did for me was unlock my heart as I felt frozen on the inside. This in turn helped me to move on. God bless
    • CommentAuthorWolf
    • CommentTime1 day ago edited
    Finding Waldo

    That's what I might call year four. I've never named a particular year but this seems like a good place to start.

    Thanks Myrtle, but as CO2 implies, it's more like a milestone story about my life and doesn't have any residual remorse because it's been bereaved out over enough time. I have her framed picture up in my bedroom and my fridge is plastered with pictures of us. Her remains are in the living room in that urn. Thoughts and memories tend to be of the real her without disease and that period of disease has been meticulously plastered with asterisks. I don't dwell there by conscious choice and I take no meaning from that period except our fight together through it.

    I have faced the reality of my situation somehow over these last two years where my first year was a lot like CO2's. I know I have, because I have no residual concerns about my life coming from a state where I had little but residual concerns. I know what getting up in the morning feeling natural inside is because I've even passed the period where I noticed I was doing that and just accept it. I don't think of myself in terms of anything except being here now and figuring my life out.

    One interesting part of that was when depression split in two like a cell dividing, revealing the differentiation between depression and depressing. It answered the dichotomy of feeling a lot better but rarely good. In simple terms, it feels good that depression seems to have evaporated but it's still depressing because being faced with putting Humpty Dumpty together again by starting over late in life alone is depressing - and that's not a mood thing, it's inherent in the reality of those facts.

    I wondered about that for quite a while. Feeling better and better leads to feeling good, right?? No. It signals that bereavement and healing are progressing which is very important but doesn't affect the fact that the reality on hand is a depressing one.

    I have some people around me still who continue to comment that I'm not moving forward because there are no visible signs of travelling or moving or new relationships or romance. I understand that just as I understand that some people hate to be alone and so they must form new relationships.

    That reminds me of a joke I wrote once where the person is on the phone saying "Have you heard? Wolf passed away." And the other person says "Oh that's terrible. Well, he did smoke." And the first person answers "I know. But he was eaten by a shark."

    I'm happy. How many people have said that? I have my boundless curiosity, and endless energy to satisfy that, back. I've never been happy the way some people seem to be. When I feel like myself throughout it's all in harmony and for me, that's both as good as it gets and more than enough.