Sometimes I want to run away from home myself, believe me! But we always find a way of coping, as you have.
I do find inspiration in all of your posts. Always looking forward to them, to what you do, and I think we all feel the same way. We are all in your corner, and learn from you on this journey.
Elizabeth, I kind of figured you were on top of things but perhaps the suggestions will be helpful to others. When I post, I always run through in my mind how my words might be misconstrued by any and all who come across this site.
I have enjoyed so much the posts from other widows. We are all in the same boat and I think are all experiencing the same feelings as we move on alone and single. As Elizabeth has said I am finding that trying to find my new place in the family seems to be my biggest challenge. I am starting to,go out more socially but this week has been more alone time than I wanted. I still am not real comfortable doing things by myself. I went on one bus trip when he was in the assisted living and it was full of lonely women and only reinforced my situation. It has only been 13 months so I guess I need to put things into perspective and realize I am making good progress in adjusting to my new life and realize that my new normal has not arrived yet.
The hardship of recovery from this is serious. During was dominated by endurance but afterwards is dominated by suffering. During, I wouldn't allow myself to see my own misery because how does that help me? My misery only mattered when it got the best of me because it was always there 24/7 and I learned in those years that if I allowed myself to listen to my own feelings screaming, then my little boat was in even more trouble.
In law (in the few countries that actually have largely functioning law), there is the concept of duress. A confession made under duress is highly suspect as it should be. Caregiving our spouse with a fatal illness for years is top drawer, full out, and serious duress.
I might describe duress as life becoming so hard in some way that it pushed us out of our normal state. I believe that murder committed on the spouse after years of such duress won't exonerate the crime, but will hugely factor in as mitigating circumstance and would hugely factor in the form of punishment. I would agree with that generally and believe I would whether we'd had AD or whether Dianne was reading that to me out of the newspaper.
Afterwards, when it's safe, and in the midst of grieving, I believe duress begins transformation from endurance to suffering. Long pent up feelings need to come out and they do not come out when you are still in the situation causing them. Those were overspills and reactions that had to be shut down in some way to prevent flinging off the deep end.
The reality of the price paid for Alzheimer's is those years, her death, and how it has changed me now that I'm ok with moving ahead is yet to be revealed. Being healthy in terms of healing in my opinion must be a state where the realities of Dianne & me and the realities of my experiences here both seem smaller than the realities of my experience now.
Nothing is clear cut here. There are too many powerful things happening at the same time. But it is becoming clear that the first feelings growing out of my garden are sad and that, if I were normal, I might have understood that beforehand. The more I can feel, the more I'm going to feel suffering for a while. For example, I have never invested in the empathetic thoughts of what it must have been like for her, as I have these last few months. I have never invested so openly in the thoughts of what it would be like if she were still here. We lost close friends during her illness. We would then be grieving for their losses where we would have been invested in their pain - instead of my having cut them out of my life for sins committed.
I have enough feelings to sit here and look at and feel the different pain points and the different realities with some empathy. I'm finding that all stories cross my mind in more tangible ways than they have for years - especially my own.
Yesterday I went out in the morning to get the paper and carelessly, I fell on the stone steps. One moment I was caught up in my thoughts, and the next second I was down on the ground and when I looked at my arm and elbow and wrist and hand, I had seriously ripped myself up and when I stood up I found out I had also sprained my big toe badly. It's purple and blue today. I just changed all the large bandaids and washed and re-medicated the wounds.
It reminds me of one of my friends who fell just four steps down off a landing and did serious damage including cracked ribs. He is still not back to his former self and spent two years in treatment and pain. What happened? Exactly what happened to me.
These years the cost of Alzheimer's is the reality of my life and the more normal I am and the more natural feelings I have both allow me to suffer more fully that truth because that IS the truth of what is happening and it will be for some time to come by all indications. Rats!
I'm considerably more operational, more myself, and less oppressed than I was and that keeps puttering along. I'm going to have to learn to stop thinking in terms of solutions or epiphanies and just keep trying to solve specifics and find moments.
Along the way, I am sure there are gear changes that come in the afterwards. At some point different aspects have had enough time and thought and their domination gears down. We feel changed to different parts of this as our mind and spirit move away from where it ended. It ended where 'grieving' began. Nothing is straightforward about this experience.
Wolf 1: "It was you that said grief has a long tail. What the heck did you think that meant?" Wolf 2: "I know. I know." Wolf 1: "Look, lets just keep going. It's gradually working." Wolf 2: "Yippee." [eyes roll]
"Being healthy in terms of healing in my opinion must be a state where the realities of Dianne & me and the realities of my experiences here both seem smaller than the realities of my experience now." I haven't found that to be true for me. The two co-exit, side-by-side. No, not true. My present reality is still shadowed by the past. I don't expect that to change.
Mary, if I knew how to get over things I would try and patent that or at least copyright it.
I created art yesterday. I keep my throne sparkling and always have, but yesterday I really cleaned. The faucet sparkled, the mirror was spotless, the counter and dish soap were spotless. And then I put the cleaning things away and pulled out a new box of tissues from up high in the bathroom cupboard. Instead of getting the box out, I pushed it further back and had to really reach up to get that box from the deep cupboard. Then I turned and beat that new box of tissues repeatedly against the door frame leading into the bathroom declaring loudly "this is what I really think!" and the cardboard box disintegrated sending plumes of fanned tissues everywhere like an elegant snow fall. I dropped the tattered remains of the box and left my spotless bathroom. I left it like that for the day because it was the living art of my current reality. There's nothing abstract about it. It's objective expressionism.
So now I've invented tissues in a bag. I folded that long accordion of white into a jumbled mess and dropped that handful of eider into a small bag I had. It's not as good as a box of them until that box is three quarters empty and now when you reach for a tissue quickly, the entire box bounces around.
I would joke about being shadowed by the past but I've experienced a lot of pain watching what that's done to people I love. I have issues with what I went through and that has been more than enough personal education about what life can do to our sensibilities and how easily it can mess with our fragility. Everyone is fragile because everyone breaks with enough force and denial of that is simply a philosophy which includes self deceit for appearance.
My life experiences taught me irreverence over and over and over. I can count on one hand the things in reality which are not selective point of view. Almost every experience in life bar none has been managing myself through that, often arbitrary, selectivity. People try to do what they want and they always have and always will. It's called free willy or something like that. Who cares what it's called when everybody remembers their personal version of facts?
I wish I could help and I've said that before. It's hard to come away from outrageous slings and arrows. It's even harder to change our foundational outlook about our lives. That's what a lot of this is about and the one thing everyone agrees on is that it's very hard.
I agree Mary, but I'm trying to understand myself better.
What if I came up to myself as a management consultant and asked myself "how can I help you? What can I do for you? How can I change things for you?"
What would I answer? I can tell you. I would behave exactly like you'd expect someone with real problems to behave. Disjointed, unclear, irritated, and without any real answer to that question.
Step way back and the first truth is that I hate this life right now. I'm living in a nested and opposing reality where I want my life because I have to. But that truth only exists because the first one does. I hate this life right now because any other feeling would be insane. I'm TRYING to learn to live in something I HATE because choosing to live without Dianne would always have been the most hated choice.
Step way back and I can see similar conflict in a different but simultaneous war. I want to accept what happened to Dianne and move on from traumatic things; but, the deeper truth is that I can't stand what happened to her, I can't stand what it turned her into for her sake, and I HATE that she is gone.
Throw in lesser things like the painfully hurtful behaviour by the trolls that used to be big parts of our meaning. The things Dianne herself did and said which were very hurtful. It doesn't matter here what was what - it matters that it was very hurtful. That is a fact by itself. Add the horrors that I endured from being made to watch all the pieces of her go until I was reduced to the cleaner of her toxic excrement.
I know I'm under real stress because I not only feel those conflicts 24/7, I live in their compounding and conflicting deceit every day. I have to. But how do I help myself? How do I answer this life coach's offer to help me? I'm asking because I don't know an answer.
What do I actually want now? I wish I knew. To feel better and more normal.
I'm being directed by how I feel - which is scary. My old joke about running my own insane asylum still has bite. Patient heal thyself. It's like a sick joke. It's nothing less than the patient making up psychology while the doctor nods at every thing.
Look, I either became a whack job because of Alzheimer's or these experiences have the sort of dramatic effects I go on about. I'm going with 'b' there. The experience though is that I feel like I'm mentally ill. I'm not my normal so I must be mentally ill.
It's my life that became insane - not me. I have lived with fears of actually going crazy and I haven't even recognized myself for multi-year periods. When I list the things that have occupied my mind for a decade, it's a nightmare in ways no book or movie touches. That's because no book or movie becomes your living reality - but this long horror did become mine.
We all know all this. There isn't any answer to that consultant/life coach. Make me feel better now would be the most honest answer I could give. That's why I get up in this lie every day where the real truth is the honesty of all the truly bad things, but in which I can't afford to dwell or even listen to them much because I have to piece together bits of things that create my new world and I'll give you another example of conflict here - the pressure of looking into the void for answers because I need those answers to survive in the long run, and all I have are these pieces.
I've been scowling the entire time I've put this together. I have long felt a mixture of frustration and weariness growing out past grief. I...am...so tired of all this. Struggling to not scream. Struggling to not collapse. Struggling to everything, including being creeped out about how little I felt anything like myself whatsoever and instead actually felt alien to myself. That's frigging creepy beyond Stephen King.
So now years later, I don't worry about going crazy and I don't feel alien to me and I'm not hanging on by my finger tips anymore; but...well, you know the rest. I have no choices I can see but to keep going and keep blustering and keep whacking the undergrowth because I can tell you that however excessively long journey this is to wherever - I'm not going quietly.
I've known for some time what I want. We don't last. The oldest person in our entire clan died at 80. My sister and I have a few years to bop around in and I want those years and I want the moments in them. I also hate these years and want nothing to do with them. Some call that range. I call this a royal pain.
Anyway, I do agree with the part about contrast. I live it.
If I ever see that wanker Robert Frost in that snowfall I'm going to walk right up and say "get over yourself".
"I've known for some time what I want. We don't last. The oldest person in our entire clan died at 80. My sister and I have a few years to bop around in and I want those years and I want the moments in them."
Wolf, Since time is of the essence, it might be worth it to give antidepressants a try. They would not spare you from blustering and whacking the undergrowth but they might give you some respite. I take them and although they have not been a miracle drug, they have allowed me to function at a somewhat crabby level, with brief moments of contentment.
Thank you Myrtle for the suggestion. I can't take them for personal reasons but I appreciate the thought especially in that context. Having come all this way without them, it would be odd for me to start taking them now.
I'll tell you something I haven't told anyone. In the few years running up to the diagnosis, Dianne's behaviour to me became intolerably uncaring after a lifetime of the opposite. I told her we were heading for a divorce where I thought I was facing one of those incomprehensible changes people undergo at any age. I was beside myself because I couldn't find out a reason or a motivation. Our marriage was under serious strain where she was oblivious to that and I was looking at what I would come away with in my half of the assets. I was miserable I thought but it was just a warm up game.
When it became clear it was a disease and the diagnosis came on July 31, 2008, the night before my unwanted anniversary - I told her I would see it through with her because in the subsequent months I came to understand there was nothing happening between us. It was Alzheimer's. That was a stunning night for me because I was taking in both that we were screwed and that we were fine. I also am quite sure that I told her often enough not to worry about all the garbage that had been happening because I understood that nothing was going on and that I would be standing by her - that she got that we were OK now even though I bet she never really understood what was wrong in the first place. Doesn't matter. We died as the same us that started together. Price that.
Listen, Wolf, I think you are a stand-up guy and Dianne was beyond lucky to have you. But you've got to stop beating yourself up and start nurturing yourself and making a better life for yourself. It all takes time, and the melancholy comes and goes...coming a little less often, lasting a shorter time, coming in a more mild form. I think that as time goes by you will feel more and more happy, with a warm glowing feeling, that you and Dianne had what you had. But here's the thing, especially if you think it possible that you will not have a long life...(and who among us has any idea, really, how long they will live?). You have to start giving yourself some positive experiences...start by thinking in a perfect world, what would your perfect day be? And start trying to plug in some of those experiences, and just live your life with more happier moments. I find that it is far easier said than done, and it takes a good deal of trial and error...but things do start to percolate towards a new and more meaningful life, tailored by you and just for you. I think antidepressants could be a helpful tool, but if not, I'd suggest the old standbys of just getting outside for a little exercise and fresh air--go out and take a good walk every morning, preferably in a pretty place. It almost sounds so simple that it's silly, but believe me, it helps. And sometimes when the sadness just envelopes you like a damp, wet mist, I think escape into reading entertaining books (have you read S.A.Corey's "The Expanse" series? Best science fiction ever.) or binge-watching multi-season TV series on DVDs or streaming video can take you out of yourself. (I just spent three or four days watching seasons 2-6 of Downton Abbey--had only ever seen season 1--wow--never realized that show was so good.) So be kind to yourself, doing what brings you peace, relaxation, and escape in reasonably healthy ways. It probably will be very individualistic, and perhaps not what books and articles on bereavement say you "should" do. I never read anything that says you should memorize poetry--but I can recite "The Lake Isle of Innisfree" start to finish, and it puts my head in a good place. Took me over three weeks to memorize that thing. I go online to the National Library of Ireland's Yeats Exhibition, and say it out loud with W.B. Yeats. Weirdly fun--I feel a great sense of accomplishment--reciting a poem with W.B. Yeats--it does me a lot of good--and I have no idea why. So there are probably some strange (or not) things out there that will help you, too. Anyway, hugs. Hang in there, kid.
For any trauma suffered, it is a fine line we walk between self-examination and rumination. The difference between the two is that self-examination should lead to enlightenment while rumination reinforces the trauma. Who can really see that line for himself? I doubt very few.
That is why it is important to have some sort of feedback from someone and a strategy for reining in the rumination, if nothing more than snapping the wrist with a rubber band and scolding the self. I am weak and prone to ruminate these injustices of life so it is a Sisphean task to constantly herd the thoughts. But if I don't try to control the maverick ways of my mind, the thoughts go to places of intense suffering and hopelessness.
Should we all weigh in on coping skills? My eyes are burning from looking at the pain under the microscope for too long this week.
Wow did I ever need to hear those things. Wherever the line between self-examination and rumination is, I wandered all over it. I've always been like this in the sense that half of me is yelling out the answers while the other half of me walks into fence posts. I'm saying it. But I can't hear.
Thank you all for helping me.
My coping skills were really bad. I had trouble going to new places because bad things might happen. Everything turned out to be much easier than I made it out as, but the extent to which I went in the gutter on even simple things is amazing. You're talking to someone who literally sat on the steps by the garage door trying to get up the momentum and ability to open that door and go and get groceries. I really did get my guts kicked out by all this and however weird I am today, I'm nowhere near as damaged a human being as I was and thank God that is clear to me and accessible in the longer view. It's also clear though, that a depressed person forgets about the exit in the sense that I have found periods where I even felt confident if not enthusiastic, but I have to start over because I had my head down and wasn't looking there anymore. What a strange thing this all is.
Great differentiation, marche. I do wonder if snapping a rubber band or scolding oneself is strictly necessary under our circumstances. I tend to think that with rumination it just takes the time it takes. But when perhaps the shadows lift just a little, or there is the tiniest gap of sunshine and blue sky in the clouds, that maybe we could try...just a little...for the self-examination.
I do think that something is necessary to break the cyclical and habitual cycle of rumination.
Snapping a rubber band or other means of a startle focuses attention to this destructive habit we are trying to break. A moment of pain causes pain aversion. I have a little wrist band thingie that delivers a slight shock. It also makes me aversive to wearing it, so the jury is still out as to whether that works.
I found a summary of grief that seems to hit a lot of points. Maybe I'm starting to be more open to this. I looked in dozens and dozens of places and I came away frustrated at the lack of what seemed like helpful information. Maybe I was closed to it. I don't know.
....
Helping Yourself Heal When Your Spouse Dies
by Alan D. Wolfelt, Ph.D.
Few events in life are as painful as the death of your spouse. You may be uncertain you will survive this overwhelming loss. At times, you may be uncertain you even have the energy or desire to try to heal.
You are beginning a journey that is often frightening, overwhelming and sometimes lonely. This article provides practical suggestions to help you move toward healing in your personal grief experience.
Allow Yourself to Mourn
Your husband or wife has died. This was your companion, the person you shared your life with. If right now you are not sure of who you are, and you feel confused, that is appropriate because you have lost a part of yourself. When you experience the death of someone you love, live with, and depend on, feeling disoriented is natural.
You are now faced with the difficult but important need to mourn. Mourning is the open expression of your thoughts and feelings regarding the death of your spouse. It is an essential part of healing.
Recognize Your Grief is Unique
Your grief is unique because no one else had the same relationship you had with your spouse. Your experience will also be influenced by the circumstances surrounding the death, other losses you have experienced, your emotional support system and your cultural and religious background.
As a result, you will grieve in your own special way. Don't try to compare your experience with that of others or to adopt assumptions about just how long your grief should last. Consider taking a "one-day-at-a-time" approach that allows you to grieve at your own pace.
Talk Out Your Thought and Feelings
Express your grief openly. When you share your grief outside yourself, healing occurs. Allow yourself to talk about the circumstances of the death, your feelings of loss and loneliness, and the special things you miss about your spouse. Talk about the type of person your husband or wife was, activities that you enjoyed together, and memories that bring both laughter and tears.
Whatever you do, don't ignore your grief. You have been wounded by this loss, and your wound needs to be attended to. Allow yourself to speak from your heart, not just your head. Doing so doesn't mean you are losing control, or going "crazy." It is a normal part of your grief journey.
Expect to Feel a Multitude of Emotions
Experiencing the death of your spouse affects your head, heart and spirit, so you may experience a variety of emotions as part of your grief work. It is called work because it takes a great deal of energy and effort to heal. Confusion, disorientation, fear, guilt, relief and anger are just a few of the emotions you may feel. Sometimes these emotions will follow each other within a short period of time. Or they may occur simultaneously.
As strange as some of these emotions may seem, they are normal and healthy. Allow yourself to learn from these feelings. And don't be surprised if out of nowhere you suddenly experience surges of grief, even at the most unexpected times. These grief attacks can be frightening and leave you feeling overwhelmed. They are, however, a natural response to the death of someone loved. Find someone who understands your feelings and will allow you to talk about them.
Reaching out to others and accepting support is often difficult, particularly when you hurt so much. But the most compassionate self-action you can take at this difficult time is to find a support system of caring friends and relatives who will provide the understanding you need. Seek out those persons who will "walk with," not "in front of" or "behind" you in your journey through grief. Find out if there is a support group in your area that you might want to attend. There is no substitute for learning from other persons who have experienced the death of their spouse.
Avoid people who are critical or who try to steal your grief from you. They may tell you "time heals all wounds" or "you will get over it" or "keep your chin up." While these comments may be well-intended, you do not have to accept them. Find those people who encourage you to be yourself. You have a right to express your grief; no one has the right to take it away.
Be tolerant of Your Physical and Emotional Limits
Your feelings of loss and sadness will probably leave you fatigued. Your ability to think clearly and make decisions may be impaired. And your low energy level may naturally slow you down. Respect what your body and mind are telling you. Get daily rest. Eat balanced meals. Lighten your schedule as much as possible.
Ask yourself: Am I treating myself better or worse than I would treat a good friend? Am I being too hard on myself? You may think you should be more capable, more in control, and "getting over" your grief. These are inappropriate expectations and may complicate your healing. Think of it this way: caring for yourself doesn't mean feeling sorry for yourself; it means you are using your survival skills.
Take Your Time With Your Spouse's Personal Belongings
You, and only you, should decide what is done when with your spouse's clothes and personal belongings. Don't force yourself to go through these things until you are ready to. Take your time. Right now you may not have the energy or desire to do anything with them.
Remember that some people may try to measure your healing by how quickly they can get you to do something with these belongings. Don't let them make decisions for you. It isn't hurting anything to leave your spouse's belongings right where they are for now.
Be Compassionate With Yourself During Holidays, Anniversaries and Special Occasions
You will probably find that some days make you miss your spouse more than others. Days and events that held special meaning for you as a couple, such as your birthday, your spouse's birthday, your wedding anniversary or holidays, may be more difficult to go through by yourself.
These events emphasize the absence of your husband or wife. The reawakening of painful emotions may leave you feeling drained. Learn from these feelings and never try to take away the hurt.
Treasure Your Memories
Memories are one of the best legacies that exist after your spouse dies. Treasure those memories that comfort you, but also explore those that may trouble you. Even difficult memories find healing in expression. Share memories with those who listen well and support you. Recognize that your memories may make you laugh or cry. In either case, they are a lasting part of the relationship you had with a very special person in your life.
You may also find comfort in finding a way to commemorate your spouse's life. If your spouse liked nature, plant a tree you know he or she would have liked. If your spouse liked a certain piece of music, play it often while you embrace some of your favorite memories. Or, you may want to create a memory book of photos that portray your life together as a couple. Remember-healing in grief doesn't mean forgetting your spouse and the life you shared together.
Embrace Your Spirituality
If faith is part of your life, express it in ways that seem appropriate to you. Allow yourself to be around people who understand and support your religious beliefs. If you are angry at God because your spouse died, accept this feeling as a normal part of your grief work. Find someone to talk with who won't be critical of whatever thoughts and feelings you need to explore.
You may hear someone say, "With faith, you don't need to grieve." Don't believe it. Having your personal faith does not mean you don't have to talk out and explore your thought and feelings. To deny your grief is to invite problems to build up inside you. Express your faith, but express your grief as well.
Move Toward Your Grief and Heal
Remember, grief is a process, not an event. Be patient and tolerant with yourself. Be compassionate with yourself as you work to relinquish old roles and establish new ones. No, your life isn't the same, but you deserve to go on living while always remembering the one you loved.
It's pretty sensible in that it's littered with enough actual advice even though it also doesn't give a clue what 'don't resist grieving because it can make it worse' actually means in any semi useful way. They all say that, nobody explains what that means and so nobody gives any examples. How is a person supposed to tell what that's about?
Grieving for my spouse is the main thing and I'm not arguing that. I also want to thank everyone again Mary, Myrtle, Marsh, and Elizabeth because I really did get help from that feedback and I stand ready to offer it in return.
I think it means that when you just need to be alone, or cry, or go into apathetic days of accomplishing absolutely nothing...or when you're just exhausted and blah and don't want to do anything...that it's not only OK--it's absolutely necessary. There have been days (fortunately in the past) where it just seemed like too much trouble to brush my teeth. Like, so what? Who cares? I'm too tired. And so forth.
Hi Elizabeth, I'm thinking along similar lines. I hope to open to more patience and understanding.
....
"You deserve to go on living." Now there's a ringing endorsement.
I am very unhappy. I have many solid reasons why. I know them mostly.
My life today is less bad, less traumatic, less stressful than it was and my feelings are less torqued out and overwhelming than they were. My life is not as hard and my feelings are somewhat less fried and it is only in those important ways in which my life is 'better'.
I get up every day feeling like I'm in a partially alien world because all the loose wires dangling out don't connect to anything anymore. On the one end are still all my genuine deep needs but on the other end are all the stripped wires not attaching to any of the frames of reference that I spent my life developing.
My yearning to share deeper things with persons of meaning in my life is pitiful. I understand most everything about this - but I still get up every day with massive yearning that can't be connected and can't (and mustn't) be silenced. Surely that is part of grief.
I can't have my normal relationship with my best friend. I'm not healthy emotionally enough yet to stop myself from trying to connect my yearning wire to him. I want him to become everything I lost and that's insane really and I can't stop thinking like that yet. I know I'm projecting my yearning most of the time now and I suppose that's 'better'.
For myself I have more problems than that. These experiences damaged my outlook and my abilities to cope with normal things. I'm quite sure I'm still an emotionally/mentally damaged human being aside from grief. My thoughts for a long time have been neither normal nor 'me' in the lifetime of experience I have with both of those.
Weirdness has scared me at times by the extent; but I don't have a brain imbalance - I have stark cause and effect. The cause ended and the effects take time apparently. My point is I don't believe I'm just grieving. I'm quite sure I'm also gradually coming away from trauma I'll call it, that had a real impact on my thinking and still does.
I think in some ways I have recently been screaming for help. Not much help, just the kind a rope to hang on to at the right time provides, where you can see you are not actually alone, but are around some people that get it and can answer. I stand by my ideas of that and am living proof of it's value.
I need to develop a better relationship with my grief and I need to develop respect for it's presence. I wonder how important patience is as something to try to develop as we get one foot on the ground because if anybody has a spare case of that, I could use some.
Learn to know thyself. I'm obviously very big on that. Learn to entertain thyself. That might be a way of looking at what I could be trying to do in this time where the intial waves of grief seem to have passed and I'm now only up to my chest in it's malaise.
Stripped of reasons the function is to learn to live in this and I can call that entertainment or interest or any other word because it's a variety of those things; but, in it's essence it is learning how to engage better with this world now.
I've never given books a chance in hell. I used to love reading. If I could find a way to open to reading, it would open up an entire world. Mary's book is still on my night table.
Between the paragraph above and the one two up, I went outside in my backyard and walked around looking. My elegant lawn chairs have been stacked together behind my house for about six years now. I put them out on the stone patio also unused for six years. As I type this I realize I could sit out there and have a coffee - and read. When I walked around picking up twigs that fell from the wind we had and felt the sun on me, it was poignant how Alzheimer's has deprived me of even this simple pleasure. It's experience alone reduced me to struggling with simple and meaningful things like this.
The specifics of betterment along this road consist of what I've been able to connect to. I think some of that is vicarious and some is hands on. Learning to care about my house more has meant a lot to me in ways that have nothing to do with a house. I do care and try to do the work and I also don't care and try to accept what I'm like. Both have become something real I connect to now every day and have helped me form a working relationship with my immediate world.
I have come to love the Toronto Raptors. I love the sound of the squeaks of the shoes in the gym. Two years ago I had a tortuous relationship with them. I would turn it off because they weren't playing well or leave because it was too intense. I had to help myself get to where I just care about them. I've become a real fan of basketball again and I couldn't possibly be honest enough how important that truth is. I don't know what I'll be doing in the fall, but I am waiting for October 31 when the season starts and I can't think of anything else I'm looking forward to like that. Don't underestimate what a vicarious interest can do for you.
For travel go on Utube and look up Rick Steves travel tips. He's a good host and it's captivating to see his videos of europe - especially in full screen. Here's a consecutive collection of 84 of them. They take me somewhere.
Wolf, I’m sorry that you aren’t able to take those drugs because I thought they might force your depression to back off a bit so you could attend to your grief. I like marche’s distinction between between self-examination and rumination and I think many of us can identify with her statement that her “eyes are burning from looking at the pain under the microscope for too long.”
I agree with you that vicarious interests can carry us through some hard times. I have become fascinated with the Brexit vote - not the reasons that motivated the voters, but the cascading effects, including all the permutations, ramifications, and unintended consequences. I would love to be a participant (or even a fly on the wall) during the “divorce” negotiations between Great Britain and the EU. I’ve just printed out a bunch of articles from the net about this and they will be my bedtime reading tonight.
BTW, elizabeth, the surname of the First Minister of Scotland is “Sturgeon”!
Wolf, I think one thing that helps is to find something you enjoy doing...that really feels "right", is a good fit, and has nothing to do with what you or others think you "should" be doing. And when you find it (or them, can be more than one thing)...do more of it.
And also, getting outside in nature is a good thing to do. (As I keep harping to everybody.)
Is anyone else having thoughts about where to sleep? I changed rooms to the guest bedroom for years where I never noticed I switched sides then. As far back as I can remember I slept on the left side looking from the foot of the bed. When years later I moved back into the main bedroom, I stayed on the right side. Recently I went to bed on the left side, put on that night lamp - and it all felt wrong. Even my cat tried to stay on my right side and do her flopping routine but there wasn't enough room and she looked at me like 'fix it'. So I shuffled across the bed, turned the other night light on and have been here ever since. Mental note to self: next lifetime pick this side of the bed. If I hadn't noticed this, it would be another thing that improved in my life I was too busy to notice. I turned 65 before I understood that I have a side of the bed I PREFER to sleep on.
In that same sort of vein of stuff I haven't noticed is happening to me - I have mentioned but never spent an hour thinking about a major change in my life I've completely ignored. I've been 'retired' for some time now and I've never even comprehended that - let alone accommodated that in any way. And what are all my friends talking about? Their difficult transition to being retired. That's normally true in life. My father and all kinds of people I know wrestled with that major change in life. I haven't had the wellness yet to understand that major life change is part of what I'm going through right now. Not just grief. Retirement.
Another thing I've thought about is that lately my two friends haven't been phoning me as much. One phoned me weekly or so all the way through and the other started phoning about four years ago and has also called about once a week. And when I go through my notes (a day timer I record stuff on), I can see that there is no real drop off in how often they phone me. There is an increase in my need and desire to do stuff and so it's my time frames that are changing. It still comes across to me first that they are ignoring me or avoiding me which is all part of the victimhood mentality I thoroughly earned and am trying to journey out of. That damaged outlook that things are against me isn't normal for me. Instead I've been transitioning from not being aware of any of this and just answering a ringing phone, to becoming aware of my communication with my friends, to thinking about what this all means to me, and very recently to realizing it's me that wants to talk and that I can initiate the calls, and that I can do that for years to come before we ever even out in who calls who. And finally, a little healing tenderness for me here that the wrong point is that I got weird and still am, and the right point is that I can call them if I want to reach out.
My world is littered with these things I'm just beginning to notice. My outlook on grief. I really have recently realized that I shouldn't just push. I should accommodate the truth. Whatever I call it there is a cloud of doom or a sea of dread that I lived in and still is here and it's certain that I've repressed my sorrow for my Dianne but that dread came with Alzheimer's and was long and deeply entrenched when Dianne was stable in the NH. Grief distorted a massive malfunction that already existed and didn't go anywhere the day after she passed. I knew that and said it, but I never respected or opened to it. I never helped myself with any understanding. Instead I pushed everything to get out of here.
There are answers for everyone on things we can learn to open up to and make meaningful. That is what retired people face. In order to have a fair chance at that, we can't be immersed in grief and stress. I feel stress that I don't know what my life will be. I feel stress that I'm a fish out of water. I feel stress that I can't see any real answers yet. Don't tell me I don't have the kind of stress that interferes strongly with my chances of finding answers. You have to come a certain distance down this road just to have a chance of even seeing these things with some semblance of your own self in the picture.
I agree that getting outside and feeling nature is a good thing to do and that Elizabeth has said this all along. I feel that whatever contact doesn't feel painful, we should try to have more of, and when things settle down a bit, feeling nature around us is a good feeling for almost anyone. Part of my own personal challenge is to get outside more because I don't yet. I hope to open up to it more soon because I agree strongly with Elizabeth that it's good and it's available in some form nearby.
Wolf, I still sleep in "our" bedroom, because the bed is so comfortable. But as I posted a while back, I had made some changes to try to make it "my" bedroom instead of "ours." The room was re-painted, of course, when I had the whole interior of the house re-painted. I took the TV out of the room--he was one who had to have TV in the bedroom--I am one who is happier without. I hung different pictures on the walls, only leaving one up that he liked and that we had always had in the bedroom. I put a different cross above the bed, and strung a garland of leaves and berries on the headboard. I've kind of gravitated to sleeping on "his" side of the bed, but I do stretch out and actually use both sides. And of course, now the dog sleeps in the bedroom with me, in his crate at the foot of the bed, so that is a change and it helps not to be so alone. I am comfortable in there emotionally as well as physically--it is comforting to drift off to sleep every night in the room where he died. I have a large portrait of him on the dresser, and the folded American flag from his funeral is in a nice case on top of the other dresser. I sleep like a top--have not slept all night like this for years.
I think these things just take the time they take. Try to make your life nice for yourself and don't beat yourself up. Enjoy the moments. It isn't a contest or competition to see how well or how fast we can do the grief work and get through bereavement. In terms of friends, I don't have any good answers there. I am far more isolated than I've ever been in my life--the Heartland is just not clicking for me socially. But I just try to treat myself like an honored acquaintance and have pleasant days doing interesting things...albeit mostly alone except for the dog.
I also believe in the exercising and getting out in nature daily. Many many times I don't want to do it. I do it anyway and I always feel better for having done it...every! single! time! I just feel refreshed, more energetic and I know it is not only good for the soul, but also for my overall health and well being. Come on Wolf....put some earbuds in, plug 'em up to some great music and get moving!
Wolf and Elizabeth, I too am feeling more isolated than I have ever been. I have ventured out to a few things mostly groups at my church and mostly to just meet and interact with people not associated with the disease of dementia/Alz. Some days are better than others but have come to the conclusion that is pretty much how life is. Visited a friend in the hospital last week--the same hospital where he spent his last 10 days of life. A lot of memories came flooding back but still glad I went. Came away being very grateful for the health I have. I find that sticking to a routine works best for me--exercising in the morning, doing my little job from home, etc. I have specific days for cleaning, and shopping and am now finding myself getting up earlier and going to bed earlier. For many months after he passed I stayed up very late and slept in--so I look at my sleep pattern and realize it is progress. Am currently reading Julia Cameron 's new book, It's Never Too Late to Begin Again. I was big into her earlier book, The Artist's Way and she uses many of the same tools.
Aunt B, I'm going to start calling you Becky. I did a half hour brisk walk today. I did a lot of walking last year but it didn't make me feel anything. I'll try it again.
CO2, I'm not more isolated and I feel less overwhelmed by it than I did earlier, but I do feel the effects more tangibly and more personally. I'm not sure what the right words are but it seems there's more of my normal feelings around these days to feel those well known facts with. That's looking backwards. Looking forwards, a similar thing is happening. The world in every way is becoming less alien and threatening than it seemed for years there. But once again, my sense of this actually being my life and my state seems more tangible and penetrating because there's more of me and my normal thoughts and feelings to experience that with.
I prefer quiet, and going kind of Zen. When I close my computer for the night, the last thing I do before heading for bed is to key in something like "Youtube Soothing harp music" or "Youtube harp music for relaxation"...and listen to some of that type of thing--" harp music for meditation"...whatever--before I go to bed. For wake-up music, I usually just bang out "English Country Gardens" as loud and fast as I can on the piano--not even sitting down-- on my way to the kitchen to make my coffee. (The Muppets do a cute version on Youtube.) During the day, whether in the house, yard, or park, I just don't listen to any music. I like to hear the birds, wind, rain, etc. In the car, it is whatever I'm in the mood for--varies a lot--Irish music, American country music, soundtracks from Harry Potter and/or Lord of the Rings movies, soundtracks from weird science fiction--Firefly, Crusade.
I think the point is to enhance your life and help the healing by inserting music where it nourishes you in whatever way you need. (I need to do some housework...probably need Jerry Lee Lewis doing Great Balls of Fire. Hee-hee.)
Elizabeth...I get that. Sounds very soothing. I used to be a runner. I had to have music blaring with a great beat to run to. I still like my music loud and find it hard to sit still when I hear a good beat. And...YES I do have hearing loss!
I wasn't going to share this, as it sounds so totally bonkers. Also, it was a very personal, wonderful experience. But after thinking about it for a few days, I think I am going to tell the group about it after all. I was just out in the back yard walking around with Bandit last week, on one of those glorious, perfect summer days--breezy and warm, but not hot, with a blue sky and golden sunlight, with the light wind just blowing through the trees and soft on my face--you know--one of those days that if you were cooped up working in an office or driving somewhere in a car but on the job you would think how you wished you could just be off of work and out enjoying that beautiful day. Well, anyway, I was facing the back of the house and looking at the screened porch and the back patio where Larry used to love to sit in his wheelchair those last few months and catch a lot of sun. He was such a total sun-worshipper--the aide would let him sit out there and she would sit just inside on the screened porch, as would I, because it was just too sunny for us. (We all know too much sun is bad, but Good Lord, in his case, and by that point....who cared? Let him enjoy it if he wanted to. ) Anyway, I just thought of that for a minute, when suddenly...now this is the weird part...so get ready:
It was as if I was just enveloped in a wonderful feeling of happiness, love, a feeling of golden light--it was coming from all directions in a wonderful, warm, happy, loving feeling--it wasn't coming from me--it was coming from all around me outside of myself--like it was coming out of the sky and the air and the trees. Very hard to explain or quantify, but it was the most wonderful thing. I know it was Larry, but in some different form...like light? energy? some kind of magnetic field? Well, I don't know. But it made me feel so happy and loved and secure. You all know that I'm not one bit psychic...don't have one iota of ESP capability or anything like that. I don't know what this was, but it was definitely Larry, and somehow I just knew that he was there for me and that he was happy and at peace...and over the past few days I've felt at peace and much happier, too.
I know...woo-woo-woo. Sounds like a Twilight Zone episode. But it happened, and I feel so good about it.
Not woo-woo-woo at all. I completely believe in that stuff, ever since my Dad passed and I felt his warm, loving and comforting presence surrounding me. What a gift for you Elizabeth - I am so happy for you.
So happy that you experienced this, Elizabeth. I read a verse that could have been from Larry to you:
The butterfly that hovered around you today? That was me. The feather you found at your feet? That was me. The robin in the garden? That was me, too. I am still around you, loving and protecting you, Until we meet again.
Elizabeth, I know what you are talking about because I experienced it when my father died. My mother and sister were at the hospital and I was in my apartment with my (yet to be) husband, who had come down from Vermont to be with me. My sister called about 5:30 in the morning to tell me our father had died. It was not unexpected. One of my out-of-town sisters was staying overnight at our parents’ house but she did not answer the phone there when they called her from the hospital – it turns out she had woken early and was on her way to the hospital – so I was asked to go to my parents’ house to tell her the news.
As soon as I went outside, I felt I was surrounded by a great light. As you described, it was coming from the sky and the air and the trees, from all directions. I knew at once it was my dad, but in a different form. What was astonishing was that he was strong and powerful; he no longer had Alzheimer’s or any infirmities. A sense of awe and peace enveloped me.
I only told a few people about this. My husband was skeptical but my mother believed that my father had come to say goodbye to me. I did not know what to think. Unlike my mother and in contradiction to my religious upbringing, I did not believe in the saints and angels and the souls of the faithful departed, and this experience did not change my beliefs. Nevertheless, I am confident about what I experienced; I still believe that for a moment I was in the presence of my father's spirit, or energy, or soul.
No offense taken, Margaret. And I loved the poem. It was such a profound experience for me that it is hard to talk about it--I am still stunned. And so happy. And I am very glad that others have had the same type of experience. Some things are almost too deep for words.
Dear Elizabeth, So happy that you had this wonderful experience, and I'm so incredibly glad that you experienced Larry's presence and his absolute love. I also appreciate your grace in all things. I have followed your journey and it has helped in my own journey more than you know!
Rene passed on July 8th, 2015, and this year has been incredibly hard. I loved him without reservation, and miss him so much. He is never far from my thoughts, but I know I have to move on, pass the bitterness and anger about what happened at the end, and remember the good times, which overshadowed the bad times. I am so grateful that my health allowed me to spend the time with him when he needed me.
Thank you, Elizabeth for your compassion and understanding when I have misspoken. I have been passionate, but very naive is so many ways. I'm signing off now, because I don't want to 'taint the waters', but I wish all the best in this so difficult journey. Kindest regards to all.
Marg78*, I certainly did not take offense at what you wrote. It was a welcome response to my story. Anyhow, I've always thought you were one of the most gracious people on this site so I would never infer a bad intention from a comment you made. I know some would say that what I experienced was just a hallucination induced by grief or exhaustion. I think this is a matter of belief, not logic. To me, it was real. The best part of it was the strength, power, and intelligence of my father's presence. That memory now gives me hope.
I did not visit this site much this weekend because I was working so hard outside. Sometimes I check the site on my cell phone but it's very difficult for me to post comments using that so I wait until I can get to my desktop. On Saturday, a friend brought over 4 bottles of Portuguese wine – both red and white – to go in the wine holders of the baker’s rack in my shed. I wish you lived nearby so we could sit in the shed together and drink some of it. I know that this will be a difficult week for you since it is the anniversary of Rene’s death. Please know that I will be thinking of you.
Myrtle, As I mentioned, I am working on putting the anger and disappointment about what happened to Rene behind – for me, his dignity and the invasion of his privacy was most upsetting. He so valued it. But I know he’s safe now, and that helps so much. Your struggle is still ongoing, and watching your dear husband decline is incredibly difficult, so my heart goes out to you, sincerely.
I believe, absolutely, in the experiences you and Elizabeth described – an incredible gift to both of you.
It would be nice if we could sit in your shed and have a glass of wine together – last week I did a bit too much wine, but things are settling down again, and I have reversed myself this week, and am trying to be better. I’ve started walking and meditating, which also helps.
Thank you for your kindness to me and to all on the board. You come through for everyone. Kindest regards.
A few years ago a friend of ours was having a heart transplant. It didn't go well. We had taken his little dog to live with us. He loved both his dog and ours and they loved him. The morning after his surgery my Kevan was out on the deck with the dogs and all if a sudden they started to dance around and jump up in the air. They were looking up and were so happy. Kevan looked up but nothing was there but he sensed a presence and just felt peaceful. He told us his friend came to say goodbye to his friends. This lasted for a few minutes then they were alone. Minutes later we got a call that broke our hearts. Our friend had passed away minutes before. Did he come to say goodbye? I believe he did.
A lot of things are changing but nothing is what I would have thought. It's only now that I realize I've had no thoughts or goals like that in mind except 'feeling better'.
That isn't even the truth. I'm looking and measuring all the time but I can't say one thing that I want or how I want that thing. No more bad. Please. So, in actual fact I've been 'looking' for the absence of things because the only thing I've known so far is what I DON'T want.
The simplest example might be that I don't want to be alone and I don't want to be with someone either.
But I've got handfuls of examples like that. As though I've only looked at everything from one side and somehow lost the ability to understand that coins have two sides and if I turn it over - it looks all different but it's still the same thing.
I don't want to be working out the intricacies of a new relationship with a completely different person during this time. I want a Dianne replacement - plug and play.
The landscape is littered with these one sided ideas. I don't want to go into the worlds of those left close to me and make the efforts of developing that into something more - I want them to come here and care about me. I don't say that. I'm not lying either. I just don't turn any of the coins over and look from the other side. That is something I lost in these years of strain.
I've been really odd compared to me I was before. It's been a struggle to make myself go anywhere even when it's people I like who didn't do anything wrong during AD and have invited me to a cottage I love where they said clearly I'm not expected to do anything. Just come and take the guest cottage (bunkie) and relax.
To which my reaction one, or two, or three, or four, or five years ago was that this was all so hard. And it was. I had to make myself say yes and force myself to go and then everything they did or didn't do and say were things I went through, and then it was too much and I would go home early. When I got 'home', it often felt like the struggle wasn't worth it because of the post event crash and the reality that my life was so awful.
Well, I defy anyone to look at my life these last ten years and say it hasn't been gut wrenchingly awful. That is true. But that outlook as the motif of my future is exactly what I want changed. I want that plug and play too, just like my Dianne replacement. I know that because the very person who keeps inviting me to visit his world is the same person I resent for not being a better friend. I don't mean to and I know it doesn't make sense, but when I look up that's what I'm doing.
Trauma. That's a word you don't hear used much to describe us. It's the perfect word though. It's used to describe a person with seriously bad physical wounds where it's actually about psychological trauma. Deeply distressing and disturbing events cause trauma in the human being's mind. We don't use that word on, for example, a car engine that has too many problems to work like a car engine. We don't say it has trauma. We say it when we understand that a person has gone through events that are so serious - they are known to be able to stop that person from functioning. That's serious and it's treated that way. But only if it doesn't take years for that to happen. Then it's not even a thing.
I had trauma. I couldn't function. I talked about my existence in the abstract like it was somebody else's life - and I wasn't making that up because no part of me could relate to what my life was. I can't imagine not seeing that as an external horror that inflicted itself on us, zero different from a car accident that does the same kind of damage except by the time scale.
It's grief they say and it was but it hasn't been for some time. It must be abundantly clear from my posts that I'm OK there. "You got screwed" is my verdict and I've had all the crying and all the thoughts and all the awful memories. I'm actually glad that she wasn't turning away from me so much that I was talking to her about divorce and instead it wasn't her at all that did and said those things - it was Alzheimer's rusting out her brain. I think she understood when I told her it was OK now and that I understood and that we were good. I said it often enough I hope.
I don't have trouble doing normal things because of grief. I have trouble doing normal things because of anxiety and psychological damage which are as real as the nose on my face. This experience did things to me that everyone would understand if it happened quickly because I would have been sent to a trauma unit. They don't tell the survivor that their spouse died in the accident and then assume all reactions to that are grief. They treat the trauma and they are right to do so.
I outlined on George's Friends thread some stages I think we go through and how I recognized them. I've lived in real fear for a long time; that I couldn't do it, that I couldn't survive it, that I couldn't live in the future, that it would swallow me up. Everywhere I looked I was surrounded by horror. I have truly lived in a world full of fears any one of which was known to take human beings down. Nothing was made up or exaggerated; it was all real for me.
And it's not anymore, which has been just as real for a few months now. Where those things went I can't say. I would like to say because I would like to understand but I don't. I've watched the dread not come back day after day for some time now but I haven't had a reaction. My future isn't scary - it's ordinary and it's full of everything I do and don't do because that's what everyone's life is.
It's not cause for celebration even though I'm extremely grateful to get to here. I do have lots of issues that remain like more anxiety about everything than I had before although not as much as in December 2014 when she went in and out of palliative care and I stressed out. I have no answers about my life. I don't expect to, to be honest, because it feels like after an unbelievably long train journey, this is the end of the line where I get off. I don't know where I am really but it's up to me to figure it out and after what I've been through - I'm not afraid of this. I'll figure it all out in time.
I'll give you one clear example of two sides of a coin. I haven't heard from her family since she died when I phoned them and told them. That hurt me because that's awful and I was desperate for any contact with family. But the other side of the truth on this coin is that I have no interest in hearing from any of them and never have had. Both are true but one side is transference and the other side is me. Until I saw that I didn't 'know' that. And until I was secure enough in myself, I couldn't flip it over to where I choose.
This all may sound like the world is now my oyster; but the world is now my problem. The only thing that's really changed is that I don't have unreasonable fears and reactions to ordinary life. I have the same weird and unbelievable reactions to things every other knuckle dragging troll has. Because finally I can.
This is easy to test. Stare into your past, stare into your present, stare into your future. [Take getting older out of this] If you have unreasonable reactions to any of those then you know exactly what I've talked about here.