Come sit down beside me, I said to myself. And although it doesn’t make sense, I held my own hand as a small sign of trust And together I sat on the fence.
In the movie You've Got Mail, Jean Stapleton works at the bookstore and when Meg Ryan has to close the store, Jean invites her and another worker over. She serves tea while Meg tells her how sorry she is she lost her job. Jean answers, "don't worry about me, I bought Zerox at $8." I love that line. Right behind that line Jean talks about how the young go out into the world "armed with...well, nothing".
That's how this feels. A lost child in an old body. The difference between me and the young that go out into the world, is that they're young and full of vitality. I have a lifetime of rich experiences which isn't that useful when your major occupation is graduating from morose to melancholy.
It's not meant to be funny unless we consider the timeline 'afterwards' to be funny. The truth is it makes me puke that the price of all this is so high. I analyse everything because a wealth of information pours out of that. I have the right to be morose and sullen about being almost two years past and still trying to get my feet back on the ground. That stinks and it's unavoidable so I get to complain.
I've come to understand this is hard beyond what I know so far. I notice that around me are a diverse group of people who all seem stuck in the toffee of their own issues. My friend who lost her husband to cancer almost 4 years ago called and this time I answered and we talked for over an hour. I learned that nothing has changed. She misses him as much as ever and has numerous dates in the year where she misses him even more. Our anniversary is one of those dates. No reason to miss an opportunity.
I have a lot more examples but I won't fill the page with their stories; instead I want to talk about a commonality I have noticed. All the stories contain something the person is resisting and in all of them I can make a case that it is the resisting that is the real problem more than the issue itself.
That's another difference between the young and me starting out in life. They have enthusiasm because everything is new and ahead of them. They haven't put in the decades where we learn a lot and do a lot but where, let's face it, enthusiasm wanes.
I'm also convinced that from the age of 65 onwards, life has a fundamentally different aspect than what comes with being young with everything ahead. I believe that caregivers experience a 'culture shock' when grieving wanes where we come to be more aware of how much time was taken in those years, what state we're in now, and what's ahead. It has taken time to get used to how I look now in the mirror. It has taken time to get past reacting and just seeing myself now.
That brings me to the starkest difference between me and the young (hopefully). They want their lives. I hate my life. It's nearly the last thing I would have wanted. The world I lived in was utterly destroyed except for four people: me, my sister, and two male friends. They all live quite a hike away although not as far as I lived away from me.
I'm not a happy camper and I don't like my life; but, I'm not stupid. I was such a mess that I truly did fear I might never come out and the turmoil and anguish I went through at times felt overwhelming. I truly did worry about being able to stay sane in the long run. It's not like that anymore. I'm still fairly lost and I'm not happy, but I'm very appreciative that somehow I have come away from those states. I'm equally appreciative that I feel more recognizably like myself. I feel as though I'm largely back in the house I know so well - except without hardly any naturally good feelings.
No one is going to deny the great losses. The form of that loss and the feelings and thoughts that come with it - are personal though. The events themselves could be read by a lifeless robot and they would stand. The experience of the events is certainly all over the map and when you add a year or three, that experience becomes deeply personalized.
Some of these things, in my opinion, are material aspects of losing our other half later in life. We come in our own way to the many re-inventions of ourselves and we come to them from a state of damage, duress, and sorrow. What we are leaving is the life we had and where we are going is to the life we do not want. That's why we get angry when we're advised the throw away's as solutions.
I've been really hurt. I hate this. And my job is to learn to like it. I don't know how to do that. I don't really know what that means. But I'm stuck in this and I know that because I live it every day. That in my mind is the core of the truth about 'afterwards'. I do that with serious pieces ripped out of my fundamental core, which is the loss of my long time partner. That missing limb feeling goes on for years I'm pretty sure.
I don't think it's a rigged game, but it certainly is a stacked deck. I'm coming to appreciate more why it's so hard for so many and not just for me. Or as my know-it-all voice explains "This happened. Can you have any fun?" Well, I'm working on it. I think I am. This afterwards has no manual. Not even a brochure. Life would work better if there were brochures.
Welcome to the afterwards!
Here's a brief summary of what you need to know. A short overview of what this experience is. Some do's and don'ts and timetables. To get more information please refer to the manual.
....
As I said. No manual. Just isolated, unconnected experiences all around me.
Your world is what you make it. Nobody else is responsible and nobody else can do anything about it. The only one creating this life is you. The only one who can change it is you. Choose what you want. If you are willing to make a change then do it. If not accept that it is ok it is what you have chosen. you are responsible.
I don't think these things are so black or white. What Wolf says about grief in older people resonates: we don't have our rosy future to look forward to anymore the way we did when we were young and every thing was new and shiny and full of promise.
Yes, life is what you make it, but, darn, some people just plain got the short end of the stick in life. Consider folks living with mental illness, or cerebral palsy, or, or, or, AD? That's a dud hand in the game of life, and while many amazing people make the best of it, others don't or can't. And there is the question: is it don't or can't? I surely have no idea. We are all put together differently. A pragmatic individual may indeed move on to the next thing unscathed, while the dreamer/poet is devastated.
I am devastated and I am trying to move forward. I mourn the loss of youthful opportunity and the irony is that the wisdom I have gained is now lost to the ravages of age. And I take full responsibility in knowing that I am forever damaged by what this disease did not only to my husband but to me. I do not have a switch that I can flip and turn off the pain and loss and turn on the good times. I just don't.
Now that does not mean that I give up. No. I will keep trying to recover, just life Wolf is. But I have changed and I can step back and see what is happening. It is called the Circle of Life because every generation relearns the same lessons, makes the same mistakes, has the same heartaches, and dies in similar ways. Some days it seems that such redundancy is plain madness.
Rona, you are wired to just get on with things and that is a resilient trait that will serve you well. Others of us are of a different ilk. We all tend to deal with life according to the hard-wiring of our personality. And that array of personalities in society is what makes it interesting and keeps the dreamers/poets alive.
Rona, I think your post was a little harsh toward other caregivers.
There are different levels of being able to "create a life". Some people have decent health, adequate finances, and supportive friends and family. Other people are injured, not only from caregiving, but from other life events, the passage of time, their own health issues, financial limitations, and maybe even the betrayal by people they thought cared for them.
As for the statement, "Choose what you want"--I don't think any of us would have chosen this! You don't always get what you would choose. Life happens. This nightmare has happened.
As I read somewhere, when your life burns to the ground, it takes a while to rebuild. The last thing caregivers need as they try to put their life back together is someone who is impatient with their timetable or critical of how they do it. I'm not yet to the "after" part of caregiving, but I'm in awe of the people who have struggled to rebuild a life for themselves. And it helps me to read what they have written about the struggle, and all the many successes and setbacks. It makes me realize that when it's my turn to go through the "after" part, there isn't one "right" way to do it.
Sorry I am trying In my own way don't mean to offend and sometimes I think my posts like you do Jan k may be harsh. Believe me I am not critical of anyone and sorry if you read it that way. I wonder if I should post at all then I think well that is how I feel it may be harsh to some but may motivate others I don't know. Sometimes controversy motivates. Marche I agree with you we are all wired differently, you articulated that very well, I feel guilty sometimes when I post about what I am doing when I hear about others struggles. I am lucky I do not face some of the struggles that others do but I will not feel guilty about that we all face the same challenge here. I think many may be waiting for me to fall on my face and believe me I have been lately. My emotions bounce up and down everyday. What can I say I just keep trying to pick myself up and keep moving on. I am postive excited about the future, that is right now may change three times by tomorrow, just hope I don't hit a wall and really crash.
You know I think it is a positive think to tell you what I think and what I am trying to do it is not a course for everyone not meant to make anybody feel bad. Jan K I understand the need to read about others journeys to help you through, believe me it has helped me, but I don't want to just read about everybody's struggles but what people are doing to rebuild. there have been some posts lately about what others are doing, starting a coffee group, a book club, all great stuff. I may be dreaming but I am trying and I think that is important to share.
I stand by my statement above as harsh as it is we have been dealt a shitty hand and we are the ones that have to deal with it. Whatever you do realize it is up to you to change or to accept the situation. You need to do one or the other to reach some level of contentment.
Perhaps your comments would be more appropriate on other threads, Rona (and they have been ) but here you need to be be less critical as our spouses have died so it is a very different road from the one that you are still on and it worries me that an unkind word just may tip someone over the edge (and it very well could be me!)
cassie*, you made an excellent point. Before I became a widow I did not understand the feelings that would now become a part of me. I thought I had already experienced the whole gamut of feelings through the years intense caregiving. But this, as you said, is different and we are fragile little ice covered branches ready to snap at the least cold breeze.
In fact, I said to my children recently that I am fragile. They looked at me in a strange way as if willing the words back into my mouth. But I do feel fragile.
I appreciate your words of encouragement about writing, cassie*. I do love to write and I do hesitate to post because 1) writing is imperfect - it depends of the reader having a similar vocabulary/experience as the writer, 2) we don't always get it right the first time, or even the tenth time. Recently I perceived a knuckle rap with a ruler for something I posted and the fragile side of me crawled away misunderstood and wounded.
Yes, cassie*, this is a thread for those of us who have passed through the keyhole. And, I loved the poem "Come sit down beside me" that you posted above - economy of words but the thought is so complete. And appropriate.
"That's why we get angry when we're advised the throw away's as solutions."
Your advice given here is the exact advice you're not taking elsewhere at the same time. Your harshness (your word) isn't that harsh but it is directed only at others and never at yourself. For yourself, moving forward isn't easy as your normal posts consistently show. And that's where the truth is. The truth isn't what you said above either for yourself or for almost anyone else unless we're a machine.
I don't think you mean anything by it to others. I think your struggles are around self authorization within internal conflicts. Those conflicts are very understandable as you try to allow your own needs in life while caring for your partner. That's a topic full of contention here, yet it is either supported here or people are quiet to allow you to find your way. No one says you shouldn't follow your own path here. In the meantime you have said in several posts that your situation is also accepted in the circles where you are making contacts. The real struggle may be within yourself in a very difficult situation and resolving that is no easy thing.
In every case you have manned up to what you said and in those cases you have also questioned whether you should shut yourself down and not post. Don't do that. Everyone here is wounded whatever that person says on a particular post. The fact of being here proves that we need each other.
I respect you because you try to tell the truth and you don't hide from that truth. Isn't that what you're trying to resolve? Your own truth. I know that's the heart of my own struggles. This experience is one of the harder things that happen to people in life hands down and that fact is the real source of conflict.
marche, I'm the one who gave you the rap on the knuckles but I did not mean to aim the ruler at you. I knew you were newly bereaved, so I deliberately did not post my comment until three other people scolded the college student. At that point, I could not restrain myself but I aimed the ruler at them, not you. I am so sorry - I should have felt more protective of you than I did of the student, for although we have never met, you are my dear friend and I know you are hurting.
Rona, The topic of this thread is "AD Widows and Widowers" - not exactly the place to go if you don't want to read about other people's grief. Like you, I enjoy the threads about what people are doing to rebuild their lives. I don't think anyone here wants you to fall on your face or feel guilty about trying to rebuild your life. By the same logic, cassie and marche are right. People whose spouses have died should not be made to feel guilty or inadequate because they are grieving.
I'm certain you have a talent for writing. I always read you. Some people have a knack for being personable and accessible while conveying something and I'm quite sure you have that. You also craft thoughts together well so it's clear to follow.
As to fragile, I think everybody is. I would argue that most tough people are afraid to be hurt. We've all got the same human feelings and ours have been on a rough ride.
All points well made. This thread is for widows and widowers, of which I am not. So I will still read but will post my opinions and struggles on more appropriate threads. Marche sometimes I feel full of pravodo but also know I am very fragile a balancing act. Sorry for the intrusion just got carried away.
Rona, as Wolf said, if we jump on you about a comment that you have made you always respond and apologize. That says a lot about you so thank you for doing that. We also understand that you too are "fragile".
Since today was the one month anniversary of DH passing I visited the cemetery. I don't know why. Made me sad. Came home and separated the Christmas cards from the sympathy cards. I don't know why. Just did. I do know that there is a wrinkled old lady living in my bathroom mirror that did not live here a decade ago! I am going to try to become friends with her. I want to wish all of you a happy and peaceful holiday season and for those who celebrate as I do, " Merry Christmas".
AliM, that same wrinkled lady showed up in my bathroom mirror last week and gave me the shock of my life. What an awfult time to be receiving sympathy cards. Or maybe it is that it is an awful time to be receiving Christmas cards . . . My best to you at this heart-wrenching time.
I agree with Rona, this is for Widow and widowers and we are not. Read, express sympathy but keep our advice to ourselves. If we are not a widow or widower how can we comment on how our experience was? We can't. I can tell you how I felt when my brother died last spring but even though we were very close he was not my spouse.
You are all such wonderful people and you have gone through so much careing for your partners with this disease. As you are always telling us , take good care of yourselves. We need your expertise and caring concern.
AliM, I can totally relate to your post. And why would you not go to the cemetery? Of course you should go when you feel like it. Or if you don't feel like it, don't go. It is entirely up to you, and I'm sure your spouse understands perfectly as he watches over you. The first Christmas is rough, rough, rough. I put up a small tree and decorated it "crying all the way", (instead of laughing all the way, like in the jingle bells refrain). Last year I was still kind of "blah" around Christmas, and this year I am enjoying it again and looking back with a smile at all the good Christmas seasons Larry and I had together. So it can take a while, but a happy Christmas does return eventually, I would say.
In terms of aging, yes, it is going to be a real trick to get better, richer, cuter, and smarter, not just older. It has taken me a while, because it was a real shocker to turn 65 the same month Larry died, and have my Medicare start. Because of the 25 year age difference, I had always been so used to being the young, pretty-ish (sort of) wife, and Larry encouraged me to look nice--used to actually send me out to the day spa, or to buy clothes or jewelry for myself. Not in a controlling, criticizing way, but in a genuinely generous, supportive way...hard to describe, but that man did wonders for my self-esteem. He was like my personal cheerleader, mentor, and life coach. He really did like me, and was interested in me. Anyway, after the hellacious caregiving years, I looked like a wreck, and had that same scary experience of catching a glimpse of myself in a plate glass window or something like that, and seeing that I looked very much like my mother or even my grandmother--didn't look like me anymore. Like, OMG, who is that frump? I looked hideous--gray hair, glasses, butt like the broad side of a barn, not wrinkly, but so clearly a frowning misery.
Well, the real short story after two years and three months: I got a good haircut courtesy of me, myself, and I (figured out how to do my own in a cool style) and I wash my hair often enough so it is fluffy and nice--P.S. It looks silver, not gray. If I didn't like it, I would go to the salon and put the color back in.I only wear glasses to drive. (Can't wear contacts anymore--eyes too dry.) I got some more exercise (thank you, dog) and shaped up the rear end a bit. Let's see, what else...somewhat brighter colors in clothing, a little sparkle but not gaudy--a little makeup but only if it is totally flattering--no compromises because I paid money and it didn't look right--Ha! Into the trash! But I really truly think, and yes, this will sound assy and dumb--getting back to smiling at people, being a little interested in them, and having a pleasant attitude has helped my looks a lot. I may be older and a little beaten up by life, I may be still a bit fragile and very protective of myself, but I'm not a sourpuss. I'm hesitantly, cautiously pretty happy (sort of) and looking forward to trying to make something of my life (or whatever's left of it), and I can tell by the occasional glimpses in mirrors that I really am starting to look better and to look more like myself and less like swamp goo from the Planet Neptune.
Thank you Jazzy, Myrtle and Elizabeth. Myrtle if we could get the old ladies to step out of the mirror and help me clean up the debris from the storm that just passed and to help you weather the storm that you are currently in we might be more tolerant. ....... Elizabeth your post gave me lots of "laugh out loud" moments. Your outlook is definitely a positive one and encouraging to me. All of our cyber friends are so understanding. A big hug to all of you.
I'm not be a good male example to speak to these ideas because I'm unusual, but, I can tell you with complete confidence that visual attraction is one of the last things on my mind.
I look at it this way. The attraction for me would be compatibility in our characters where every human in the golden years has their character largely set. And the good stuff is much more possible and likely if both can largely be themselves and have that be largely welcomed. If, as the relationship continues, we both find that we are attracted to spending more time together, and as the facts of our lives and our own quirks become more known we find it's largely fine, then I would continue to invest more into it. Whatever that means would be decided by two life veterans.
I have a friend who went the E Harmony route and he has found someone. They've been together for almost three years now and are planning to get married next spring. He told me something that resonated with me. He said the hardest part wasn't finding someone he liked, it was finding women he liked and as the dates continued realizing it didn't feel right to him and having to tell them that. I don't like hurting people and it's got to hurt to be told that the thing you're still pursuing isn't working out for the other person.
I can take that. I don't really mind being told it's not working because I deeply believe it has to work for both. I agree with my friend though, telling someone who has invested in you, that you want something else, has to be a hard thing to do.
Nothing like that is on the menu because I think the year ahead of me has a good chance of being the year I really do have both feet on the ground in the sense of acting and feeling like the man I've known for about 55 of my 66 years. I'm not looking for any complete changes or epiphanies but I'm thinking the third year is going to have a large stride forwards in settling into myself. It will be the first year I've entered not dominated by my life experiences.
I have no thoughts about being able to attract women by looking good. Everything I do and don't do will be focused on how they engage. In other words, I'm never going to care about what there is until I know how it works. I've never been here in my life before but I know myself and it would be a good relationship I would be looking for which covers easily 90% of what matters to me now.
In my opinion, if I'm not looking for someone I will go through this again with, then I need to understand that. I need to get what I am willing and not willing to give and to do. Equally I need some grip on what it is I want and what it is I don't want in my life now. I've been too busy to think of those things and life and myself have changed so much these last years, I don't trust that any answers I give won't change in another year or two. I do know my opinions and outlook have changed dramatically, then changed again dramatically, and in the last six months have changed again. Guess what my opinions are going to do next year? Different.
If I walk out this door and hunt it won't take long. The world is full of good women. I believe I have good things to offer. That would immediately solve my loneliness and there's nothing bad I can think of saying about two people later in life (or ever really) finding out they really like or love each other. There's just one problem and it's huge. I don't know what I really think right now, I don't know what I want, and I do know I'm on the rebound from a massive nightmare. I'm not doing that to me and I'm not doing that to her.
The truth is that I'm in a deep relationship. I'm learning how to feel human again. I know what that is. Ten years of horror didn't erase my memory. I can prove factually that I've come a long way to being my normal self again; but, I can also argue persuasively that I'm not there yet. I am convinced that what and how I think now is going to be materially different this time next year.
What's my story, she asks. Well, I'm still trying to find myself in a life I don't want, I answer. "Wait! Where are you going? They haven't served the food yet!"
I do think people can fall deeply in love at any time in their lives. More relevantly, I believe lots of people can really like each other. Still more good news. I think most people can get along and make something mutual grow. There are a lot of good people out there and I believe more predicates on the outlooks and the moods of the participants in that particular moment than anything else.
I believe each of us MUST have a deep involvement with relationships inside. The fact of the power of losing what we did without reference to ourselves but by reading the worldwide opinions, guarantees that we have deep feelings about relationships. A new relationship now absolutely will be consuming in the now and thereby is guaranteed to replace the immediate loneliness. People who believe in their hearts they want that should push themselves to get in front of people where that might happen. Remember that being happiER is a good thing and making someone else happy is another good thing. There will be drawbacks in new choices, but there are drawbacks in everything - even in not ever making a choice.
For myself, I hope that I'm capable of something more than I've done so far. I mean to give myself a fair chance at that and if it takes me two more years to come to the field where I believe outlook, capability, and opportunity have met, I'm not concerned. I mean to get more contact next year and I've come up with a few things I can try. Volunteering to help maintain some local trail or park is one thing I wouldn't mind doing. Volunteering at the local food bank is another. I can't be around animals in need. I'll take them all home.
If I can't convince myself I can do something more serious, and I don't come to like being single, then it will be time to accept that and go and find someone mutual. The world is teaming with fine women and if she looks like a shriveled potato, that's not going to be in the top three criteria for me. Mutually liking being around each other after learning a fair bit about each other is going to be number one.
If I'm REALLY lucky, I'm going to work hard at something as a single person and find a female friend or two who has absolutely no interest in moving in either.
I think I'm past the stage of wanting to chase boys--I'm mostly interested in getting the hell out of Dodge, fixing up my apartment, spending a lot of time doing creative things that interest me, and seeing friends for supper or activities here and there. (Manhattan, here I come!) And soaking some training into Bandit...that will take some time and commitment. I want him to sit-stay-heel-come-stand etc. reliably. I mostly want to look good and be in shape for my own satisfaction--not to try to attract guys. I'm looking forward to getting back to my old church--really missed St. Joe's during the Heartland years. I don't think I'll try to get back into choir or cantoring though...my voice such as it was has become another victim of Alzheimers. I'm singing around the house these days though...probably a good sign that I'm getting back to normal. (Well...the new normal.)
Will just do the best I can with dealing with the family over Christmas--DD's movers come tomorrow, and then she and the kids will be staying here with me for three days (so kids can finish school before holidays), then I think they'll go over to their new house. Then Christmas together, of course...back here at my house, I think...and then I'm out of here. Have to watch the roads very carefully, of course, at this time of year. If the roads aren't clear, I'll just hole up here in the Heartland until they are...and then, NY here I come. Going home, folks, although keeping a toe in the Midwest for now. : D
This is the first year where, as I was coming around to turning the calendar, I was having thoughts about next year (now this year). It's the first time I looked months ahead and spent time wondering what I would be doing. It felt strange because it's been so very long since I've looked ahead with the idea of making some plans.
The first thing I decided was to give myself the Courage In Adversity medal of honour. I didn't award myself that in caring for Dianne because that was part of the deal even though it was hard.
The second thing I've done is go on vacation. The hardest part wasn't with Dianne although that was the most painful part. The hardest part was these last two years where I didn't believe in anything, wasn't connected to anything, didn't belong to anything, and still never gave up fighting everything trying to find my way out.
Fighting everything was almost entirely within me. In doing that, I learned that the world not only didn't change one bit, it didn't even notice anything had happened. What I learned from that was that the most accurate barometer I have is how much the world SEEMED to change while all that happened. It's actually the barometer of how much strain I was under.
Yesterday I decided how long this vaction is. It's until the end of the NBA all star break which happens to include the day Dianne passed away - Feb 18. I'm not going anywhere because I'm already here and instead every concern and every worry I'm learning to meet with the same response. I'm on vacation. I haven't had one in ten years.
I had that thought four or five days ago and it's been different reminding myself I'm on vacation. It's actually got a bit of fun to it because it has an aspect of reward instead of struggle. I also have the opinion and belief that I've worked hard and it really has been ten years - so I really have earned one.
I know what I'm doing. I'm trying on new clothes. It's not holistic to always struggle to feel better. It's not even honest to keep talking about it and yet never try putting the burden down.
I chose to take responsibility to end this. That is the experiment. What others do is their choice, but I only have this one path. In graphic simplicity, I kick everything repeatedly in the head until it lets go and I verify it has fallen off. Guilt is an example. I stuck a message to Dianne in the place where guilt used to hound me. It says "you're welcome".
I did things during those years I'm not proud of. I lost my temper at times and I stormed off at times leaving her in her mess. I yelled at her. I forgive myself for breaking under the strain at times. She forgives me too. Everybody does when it's clear that you are a prisoner for years in one of the hardest jobs in the world.
I also know why this is so hard for many. It runs straight through what is called selfish. If you think the world is a mess don't ever look inside people because the world is far more sensible about reality than most human beings. I forgive myself for surviving. I completely agree that if I have to survive then I want it all. I've thought long and hard about this and I've decided that my end goal - is to feel fine.
In my world that means I can answer my own questions or anybody else's. Some time ago I had the thought that I was far enough out of this that I had to accept that looking behind me I could see a lot of things, but looking forward was now all up to me.
It wasn't valid enough to say I was healing anymore and it was time to take responsibility for my own welfare. I agree with that. So who do I fight now? No one. Hang the gloves up. I may need those again. But that's not enough. You don't fight your way to feeling fine. You embrace it in your intimate arms. You create the state of mind that welcomes feeling fine.
OK, I thought so that's the next struggle. No, my thoughts answered, you're not getting this. You need a vacation. And so I thought about what that meant and I came up with the idea that it means I get a vacation from worrying about anything. Yesterday I remembered I'm supposed to be on vacation and I wondered how long that should be. That's when I came up with almost two months instead of two weeks. "Now you're getting it" my mind agreed.
It's a spiritual journey. I said it here at the beginning and longer than Dianne and longer than Alzheimer's, I am still learning what that means. It's not just OK that I survived, it's good that I did. But I'm not going that way; I'm going this way. My life full stop.
You know what this is? It's riding a bike with training wheels on. It turns out there's a long flat spot in the middle where the old stuff has lost most of it's power but the new stuff hasn't had a real chance of existing yet. We're just beginning to have a real chance at them and we're just beginning to find pieces.
I'd worry about that but I'm not allowed to. I'm on vacation. Put it in my in tray and I'll look at it later in February. I have a huge space game waiting for me. I've spent dozens of hours in it already and worried that I was spending too much time in it. Now I'm not allowed to worry so I may as well play. The denizens of Zorgon are threatening my people and they need me to protect them from the evil empire. My destiny awaits!
It truly does await you, Wolf. And don't ever despair as we all know training wheels can be put back on as easily as they are taken off, sometimes when the road is a bit rough they are still needed. Enjoy your well deserved vacation.....
Wolf, you are the voice of reason and the mainstay on this site and always, and I mean always, have exactly the right thing to say at exactly the right time. My posting on this particular category is a bit odd as I am not a widow, yet. But I read this category each time there is a new posting as the information is pertinent in a tilted way. I say tilted because that's how life is, you have to become tilted in order to survive circumventing the caregiver's map of the winding dead end laden route to and around the town of Alzheimer's.
I think about the last five years; the years I have been in the town of Alzheimer's is actually many more, but five years is good enough to make my point. I bought a car, on my own without my husband's input or credit, is my husband dead? No, but in the business world, he might as well be. I sold our home of 20-years, by myself and downsized and purchased a small townhome (no yard and all the things I didn't need to have to deal with) by myself in my own name. The attorney helped me navigate that harrowing detour on legal ways to be not married when you are married (for business purposes). I have not had a two way conversation with my husband, that made any sense for many more than five years. I have navigated my own health issues, by myself, fixed broken things around the house that I can manage to do so without breaking them even more, have pretty much lived as a single person now for many years. Sending out Christmas cards in my name only, that's an odd one to get my teeth into but another tightrope stroll on the things we do as the significant other's of a dementia sufferer.
So, really, in a way I am an Alzheimer's widow and that's why this category is very significant to me many times, just as all of the others.
Thank you. But I do have to point out that I've reached the dizzying heights of trying to take a pretend vacation, so...I think that speaks for itself. Sometimes I think I can see something and then I only believe I do and am never sure and sometimes I'm wrong. That and nothing else is the truth. Sincerely, thank you though. I really do appreciate what you said.
So far that vacation has consisted almost entirely of me saying I'm on vacation and not much else.
Those of us that have or had a spouse in a home have that experience of living on our own. I think it helped me to cope and I do think the time on my own also helped me afterwards because there were aspects I got used to. In my case I found them different. Before I was still focused on us and I never really let go of that until after she passed. There is no 'us' now. That was made as clear as if it had been done with a meat clever. Before. After. Night and day. Make that day and night.
It is since her death that I live in a different world. That is clear as a bell to me. Everything to the day of her death is a continuity for me and everything since began in the largest discontinuity I have ever experienced. I never let go until that day and then I had to. I've done some unusual things with this and I stand by them. I'm having all of it. I mean the good stuff too. Well, that's the plan.
They're all ripples in time. They float through my mind and touch like water droplets on a pond sending ripples that connect to each other and fade away. They're all the thoughts and memories of all the things that were when life was happening to me.
I always had to be somewhere. I was always expected to do things. I always had responsibilities and expectations that were coming up. To be at the meeting, to be home when the lights came on, to have dinner together and go to bed together so the next day could start. Bring work home, go to visit relatives and friends, go on vacation to get a break from the endlessly structured time.
It couldn't be more opposite now. Yesterday I paid two bills and bought groceries and after several months finally gassed up the car. I can quite easily close out the month and only need some fresh vegetables and fruit. No one has any expectations of me and, knock wood, I don't need or want anything happening to me right now. The quiet that used to be painful loneliness a year ago is just what the doctor ordered.
I don't want this life. That has morphed several times from I can't stand to look at my life,to I don't want anything about this life, to I want to make changes to my life.
In all this time my mind and my body have been miles out of synch with me and for a long time that was serious. Suicidal thoughts, debilitating anxiety, depression, PTSD, and who knows what other clinical horrors have been beating on me like a frenzied gang of thugs in a rage. Grief, guilt, isolation, years of denial of my self. It was a mob of things and it felt like an endless nightmare that took everything and left me a burnt out husk without the memory of hope.
Someone made a mistake somewhere. I don't know who or what that was but at some point I got tee'd off and had had enough. I say this like a spectator because I have no idea what really happened. I posted that thought here maybe in July 2014 and I'm as surprised as anybody that I lived that to the hilt. I was fighting myself and I wanted out of the debilitating state I was in and I never once quit on me. I cried like a little girl sometimes but fighting didn't mean guns and brutality - it meant nursing and healing. The feelings have to come along or the enterprise stalls.
I look out at this boring same-old same-old with a sense of wonder that my road has brought me to such places. Nothing about my story is that interesting, yet it feels full of life which, when you stop and think about it, is mostly about survival of all the events that time presents.
"I wish you were here, kiddo." That's what I say out loud when I'm having fun. I miss you is what I think when I feel her absence. Somewhere there is a pool of pain that swirls quietly and powerfully. Those things all happened so they feel as they should - they tell the truths just as honestly as the truth that for me life goes on.
There and back again. What a tale that is to live from the inside where I am that book and that movie is my life and the ending of that is unknown because the story continues apparently. What a place to arrive at, to have that feel real.
Wolf 1: "Would you like to sit here like this the rest of your life?" Wolf 2: "No. But what do I do?" Wolf 1: "Stop just doing. Start connecting and belonging." Wolf 2: "To what?" Wolf 1: "Good question. Well worth answering. Good luck with that."
It helps to understand that if there really was a scripted answer, we would all be puppets. Instead we really are just here and it's over to you Gunga Din. Repetitive things teach us what to do and not do; but, unknowns generally teach us what not to do the next time around.
"I have an announcement!", the Mad Hatter said with glee As he did so, I saw he was looking right at me. Everyone leaned in wondering what it could be. "This actually is your life!" he announced meaningfully,
"What a strange thing to do", I wondered but didn't say Why does he feel he should talk to me this way? I've always been someone who just turns the page. But the Mad Hatter added, "You should act your age."
"Ahhh!" I exclaimed, "I see where you are." "At first what you said seemed rather bizarre." "I can see that how we act might take us far." "But, I'm not an actor. I'm a movie star."
Yesterday was 1 year and 11 months since she passed. I still have over a month of vacation left where I'm not supposed to worry about anything. The end of the NBA all star break is when my vacation ends. I intend to enter my third year hitting the ground running and giving 110% but I don't want to over achieve so I might settle for another vacation. I'd worry about it but I'm not allowed.
I've been thinking about Wolf's post, and about things in general. It's been two years, four months, and three weeks for me. What I've been thinking about is that I'm alone (except for the dog) much more than I ever was before. Even here in NY, with lots of friends floating around the periphery, and lots of things to do even locally--where I can just leave the dog in the apartment for a couple hours and run out--I spend most of my time alone. I've been thinking about this, and frankly, I've decided that I like it. I can do what I want, eat what I want, watch a DVD at 9am if I want...the world belongs to me right now, in a way it hasn't in like...forever. I've asked myself over the past month whether I should be more productive...start projects...write, draw, sew, start a journal...but I can only say what Larry said to me once in his retirement. "I don't have anything to prove."
At the moment, my happy dog is asleep in a sunny spot on the carpet, and I am awaiting delivery of my (much-anticipated) coffee table. At last, a place to put my feet up! I can mentally see a winding path ahead of me for the next fifteen or twenty years...it looks like a brick, paved pathway leading upward into some woods...and I am so looking forward to stepping out on it. For all those still in the miserable throes of Alzheimers caregiving and Alzheimers loss: It will not last forever, even though it seems like it will. And although it takes a while, and the progression is difficult and painful beyond words...yes, there is life waiting for you after Alzheimers. A good life.
Hi Elizabeth, I am so happy you are posting again because I connect on a deeper level with much of what you say. February 3 will be 19 months since his passing. At first I thought I was spending Way too much time alone and sometimes I still do but adjusting to this has been a real journey in itself and I am coming to enjoy my time now. Part of me says I should be spending more time with the grandchildren, my mother, my kids etc but then I back,off knowing that anytime the word should is involved it is a guilt driven thing and not healthy for me. As most of us who are creating new lives can attest, some days are better than others. My mother is in the nursing home now and although I am not power of attorney I am visiting every other weekend as she does not live locally. In a way it does feel like caregiving but not as intense as with Alzheimer's. Sometimes I feel like something is wrong with me because I do not have a huge need to be with the grandchildren or'other members of my family. I also have felt incredibly selfish I think because in my entire life I have not really had the opportunity to focus on me and my needs until now. My mother and I used to be closer than we are now and that is okay. This disease has changed me on so many levels and I am still getting my head around that. It feels like the disease has created an entirely new person and I am still getting to know her. I have been working from home and have made the decision to drop the one company. That was hard because I like the money but I realize that it is preventing me from doing things that I enjoy more. At this point for me it is all about choices that make me happy. I am not ready for a dog yet, but that too may change. I like and enjoy my freedom to come and go and we had dogs for many many years and I know the responsibility that they are. Things that make me happy now are puttering in my house, knitting, reading, praying, exercising, cooking, and talking to a close friend. That is about it. I think that in the beginning I wanted to be with people and told myself I had to get out there as a way to escape the loneliness but as I have begun to embrace the loneliness and make peace with it it is not so bad. My thoughts and prayers go out to everyone here who thinks the nightmare will never end but I assure you it will and sooner than you think. Be strong and be brave and just take one day at a time and you will survive. Blessings to all.
The fact that I haven't done any normal living for many years, and haven't had hardly any life to speak of except suffering, hasn't been a problem because there weren't any cycles to spare with which to think like that. Normal thinking about normal living was unavailable to me.
What I have more recently is a general feeling that the power of the serious things have waned and probably, mostly because of that feeling, I feel more like my old self. What I do not have is any normal thinking about any normal living.
I don't count paying bills, getting supplies, or talking to people you already know, or cleaning the house, or any other routine as normal living. It's the involvement that used to be her and all the things that came along with the fact of her which was the main focus and instigator of what my life was about.
What's changed is that I'm becoming more ready to have more life and of course when I look around me there is nothing here of the old (and missed) life. Instead, the only choice is to begin again either by entering into a new relationship which is immediately consuming or to try and build something out of parts.
It's unfortunately true that nothing new is being revealed. What's true is that I'm catching up more fully with events that happened long ago and to a path to this spot that was set a very long time ago. The fact that parts of me are still arriving here now couldn't be any clearer.
Even if that weren't true, the new reality would always be new in the same way a blank canvas doesn't have anything on it. The world is different. I am different. And this is very clearly starting all over from scratch.
The world is different in many ways and not just in change over ten years. The world doesn't happen to me anymore because I retired from that in part and because so much of my old world was obliterated. The world always happened to me as I explained before, and now it doesn't. Anything happening will be because I initiated it.
What do you want to be when you're old? This is far beyond 'what do you want to be when you grow up?' That mostly meant what job do you want. This is as wide open as it seems unfilled. It's also likely that whatever I do will not be sufficient. I've lost my core here and even a handful of answers isn't likely to sufficiently substitute for that.
Dianne gone hurts the most. How doesn't touch that. I'm going to miss my other half for a long time and I doubt I've opened fully to how much I miss our old life or the nuances of her. This all takes time. I appreciate what I had for most of my life and one day I'll be able to do that without most of those memories hurting.
It turns out remembering her during AD is accessible to me while remembering her before is painful. I get that I guess. Patience. Unfortunately, I'm at a point where it's mostly about effort on my part to build up this new life. I'm working hard on that now and have a very high level of commitment to learning how to enjoy myself more. Boil it all down and a good life is one you enjoy. (overall I'm reading that as)
Wolf's axiom:
1. Learn to get along with yourself more 2. Learn to get along in your life more 3. Time doesn't give a flying 4. There is no four. Refer to 1.
I've been pondering this post since yesterday, and I think I "get" most of it. There are a couple points, though, where I'll have to respectfully disagree. Maybe "disagree" is too strong...I think my view is slightly different, in any case.
"It's also likely that whatever I do will not be sufficient. I've lost my core here..." Well, yes. Our loved spouses were the center of our lives. But I don't understand why the future must be core-less, and why anything we do will be insufficient. I think that we build a new reality, a new identity, a new "core" if you will...as we move forward. We can't "get over" the loss, and I think everybody on this forum realizes that. But we integrate the loss, honor our loved one in our hearts and with the new life we build...and we move forward. If something doesn't work, we try something else until it does work.
"What I do not have is any normal thinking about any normal living." I do understand that life with our loved ones was "normal" for us, and this new life without them is uncharted territory. (Like in Star Trek...'Space--the final frontier.' Widowhood is the final frontier as far as I'm concerned, and while I suppose I'm not really 'going where no one has gone before', it is a whole new experience for me.) So widowhood has to be seen as the new normal. It is the new normal, and we have to sort it out, re-build our lives in whatever way is meaningful for us, and move forward. That is a huge task, in my opinion--at least it is for me.
It isn't just, "Who am I without my spouse, and what am I going to do?", it is "Who am I in this completely changed, upside-down world...and what am I going to do?" And I think that that Is normal, and also that there is no particular time frame for dealing with it.
Well said Elizabeth. Your mention of building a new core rings true with me. I still am not comfortable sharing the building of the new me with my kids because I think I feel that by doing that I am somehow not honoring their father's memory. I know that is crazy but it only reinforces the fact that I am not yet comfortable in my own new skin so to speak. How long this process will take is unclear although I know I am making progress because I am feeling better and instead of dreading each new day, I have some joy that bubbles up and am finding purpose and enjoyment in just the normal activities of daily life. When I look back and see how far I have come in just a year, it is pretty amazing to me. My best to all those still trying to find the new normal., we will get there but it takes time and the ability to trust in the process.
I didn't read this thread before. I was a caregiver and now I'm not. I'm a widow. It happened onJanuary 31, 2016. It's been one week since he died and I'm still in my pajamas every day, except for yesterday when I had to go for an MRI of my knee, which I injured on December 30. I'll be reading this thread more now, knowing there will be help when I'm feeling grief, which seems to come in waves right out of the blue. I thought I'd feel more relief than grief because of the length of his illness and watching him deteriorate in the nursing home for almost 2-1/2 years but I should have known better.
I read some of the posts here before I began writing and was sad to see Alim's spouse passed away. So sorry Alim. I now know what you're going through.
Yes, no matter how much you think you are ready for their death, you are never ready. And while it seems like the relief should make you feel better, it really doesn't. There is just no comparison between that last breath...and then no breaths. You must focus on yourself now, Bev. You've been through a lot, and now it's like you've been hit by a Mack truck. Nothing wrong with staying in your pajamas and not doing anything. Grieving is exhausting...it sucks away your energy. Just take the time you need. I had the same experience of it coming in waves, and sometimes when least expected. The process is not at all linear--it zigs and zags. Forward, backward, sideways, onward. Hugs. (((((( ))))))
Bev, Thank you for extending your sympathy and I send my heartfelt sympathy to you. It is difficult to change my routine after being caregiver/manager for so long. With all the support on this site we will eventually get through our nightmare. As Elizabeth suggested we can stay in our pj's all day and without feeling guilty. A big cyber (Hug) to you and we shall go forth one day at a time.
I watch the most beautiful sunsets. My desk is right in front of a big window facing west. I'm on the second floor and the city to the west is somewhat lower than me. The sun sets at the extreme left of my window on winter solstice and it sets just north of my window when summer starts. Tonight it set in the one of the crocks of my honey locust tree where the two limbs meet just below the tree line. The sky right now is pink and orange and turquoise blue with a few purples and whites in the cloud bands.
The roofs are all white and smoke is coming out of some chimneys. I can see people in their kitchen three rows of houses over and some twinkling lights here and there in what in the summer is a wall of trees but in the winter shows the houses in a haze of branches.
It was the moment I looked out this window that I knew I would buy the house. Things have turned out so differently than I thought back then. But my love affair with my window has never felt as rewarding.
I've looked up and seen hot air balloons floating by or a full moon or a lineup of blue jays all sitting outside my window. And the male cardinal who learned the last few months to come to the window too and wait until the noisy aggressive jays have taken off with the peanuts and watch for the little white things that fling out then. I shell one and throw him the pieces. On New Year's Eve I watched a large fireworks display about a mile away. I turned the lights off and put my feet up and had a ringside seat.
Every morning when I get up the cats are waiting at the bottom of the stairs. "Morning guys." I say and they start prancing around. I serve 19 different kinds of tinned cat food which I buy in a specialty store. I figured it out once and the premium prices were costing me about $11 a month. I get Hagen Daaz and chocolate eclairs. They get this
They also get real tuna, salmon, chicken, bacon, and a little pork. When I make hamburgers now I make them out of ground pork. Before I put in the wooster sauce and onions and spices, I make a tiny baby burger out of straight ground pork which I add to the pan after I turn my HAMburgers over. One of the cats has decided she wants to sleep with me now and circles around once in a while like a dog before flopping against me and putting her head on my thigh and settling in.
God opens a window when he shuts a door they say. My best friend was my constant talking buddy these years until last June. He suddenly stopped calling or wanting to talk. Nothing to do with me. He's seeing an analyst and I think he would be better off seeing three of them. He wrestled trying to get away from himself for 23 years now and what he does next is anybody's guess. It hurt me. A lot. I had no one else I could really talk with. But it was then I opened to my sister more and that has blossomed. And it was in July I first went on a trip with my neighbour who has become a friend. I never thought last year I would make a new friend after some 30 years of having the same friends (I was flush). Well, I've made two new friends. They're each as crazy as I am which is great for me.
I went grocery shopping today. It was unusually busy. I was three away in our line when the cashier looked up and noticed me. She smiled because I'm a regular. "They just keep coming" I announced loudly. "As long as they're happy." she called back, "No unhappy people allowed." I answered in my theatre voice where I'm sure they can hear me in the back, "Don't worry. We're all just here basking in our rich and fulfilled lives." I tried to get that Walter Matthau bored lilt in it but I don't know how well.
I'm using a $3200 cheque/check as my coffee mug coaster. It's got lovely brown rings all over it and it's a mess. I got a letter last week from the government telling me if I didn't file within 30 days they would double any penalties and interest that applied. That filing includes Dianne's last return because it's for the 2015 year. I did the work a year ago and came up with the answer that I owed them about $3100 so I wrote the cheque but I never mailed it and even though I had done the calculations, I never filled out or sent the returns. I don't know why. I was nuts in 2015.
This time I downloaded the small book on how to file a last return. It had a few eye openers and so I went through it and found I hadn't paid enough attention. Dianne died early in the year and didn't need the nursing home expenses as an offset and they could be claimed by me. She made so little in her 49 days of life that I could claim the spousal deduction which I hadn't glanced at in over 40 years. I filled it all in and found out you don't send checks anymore - you pay online by debit card. So I did that and then phoned them to let them know the returns were in the mail. "What reason should I put down for the delay?" The cheeky brat asked me. "I'm an idiot." I answered. She laughed. I transferred them $274.77. Dianne owed them nothing and is getting $51.34 back. It was then I opened the sealed check on top of my fridge and decided it would make a good coaster. Charge me the penalties. Knock yourself out.
Tomorrow is the second anniversary of her passing and on Sunday I enter my third year. Today I asked myself what I've learned. One soundbite only. The answer is, I learned that reality is personal.
One week of vacation left. Then I start my new job. I've been promoted. I'm the new janitor. My job as nursemaid became redundant. So I applied for this and got the job by acclamation. The pay is exactly the same. Barely adequate. That's all right though because that's exactly how I expect to perform. What am I going to do? Fire myself?
I think about my poor friend who is so tangled up. I hate how he is but he's as irreplaceable as I am. I know why I'm coming around. I was already crazy. I've never really fit anywhere except inside this tupperware skull with two holes in it I look out of. Well, just my right eye is made out of tupperware. I have a scleral buckle holding it together after my retina detached. It was detached for a week and the internet said after just a day or two sight would be unlikely to be restored. But I pulled a favor and got in front of the head of optomology at one of the big Toronto hospitals. He put that buckle in. I was awake the entire operation. It took the better part of a year for the gas bubble to break. Once the bubble broke up I spent months trying to look around the constantly dancing bubbles in my eye at the blurry light beyond. He was suprised by how my eye responded and called me one of his star operations. For years looking closely at something meant seeing thousands of tiny light particles dancing around stopping me from seeing fine detail. My pupil froze and has never budged again. My first tear came out of that eye a few years ago. It never felt dry but when I cried (thanks Alzheimer's) it was only from one eye. Steadily over the years it has improved to the point where I can see from it almost as well as with the other. Two slightly different colour pallettes. To this day I sometimes call out his name thanking him, grateful that he was a genius at what he did.
It may be a little crazy to go through life seeing yourself as a temp worker the way I do; but my friend thinks his life must be important and the fact of his existence must mean something - which is crazy too. "It means you're here right now." I've said to him. That's the signal of a sentient being. They're aware they're here right now.
I'm not upset that my eye went and that I spent years recovering. I'm grateful I got this much and for this long. That's how I genuinely feel. It's not disimilar with Dianne. That was her time and I drew a short stick but I don't feel regret. This is my time still and I believe I can do something with it. I already have. I don't give a flying about Alzheimer's anymore. I only care about the people. I want my life and I want all the weird stuff and the pain and the hurts and the memories that come with it. That's what this is about. Living my life. If my friend could believe that, he would have been free of his log jam long ago. But reality is personal for a human being. It comes with the territory .
I offer a proof. No God you don't believe in has any power over you. No devil you don't believe in has any power over you. Only the gods and devils we personally believe in have power over us. They only have that power if we give it to them.
It's like the idea of reincarnation. We come back reincarnated some people think. If that's true then many of those around us have been reincarnated. Yet no one starts talking about their previous lives. If you can't remember your previous incarnation then how could I possibly give a flying about it.
"Happy Anniversary Dianne", I said this morning. "I'm in an urn here" I answered back for her. Right. Right. Life's like that sometimes. Take now for instance.
Wolf, I always enjoy reading your posts. Your window view sounds amazing. Glad your eye has recovered enough for you to enjoy all the beauty that surrounds you.
Don't. It's good to hear you start talking about this. I'm sure I'm not alone in that.
Peace, eventually, is not just peace for us. It is peace for them also. Couples who love each other want that for the person who remains. Whatever we believe about life, that is the only plausible script that comes from that thought.
I believe that talking about it is not only healing, but also creates respect within us for the stories of our lives. It's hard to do.
- edit
Change don't to I wouldn't. You do what you think best.
cassie, Thank you for sharing your memories of such a difficult and emotional time. It has been three months since DH was released from his mental torture. I am still finding it difficult to believe he is gone. The Tuesday morning of November 15, 2016 does not seem real. It was and still is just a nightmare. I know I am in a state of denial just like I was when he first started showing signs of the monster. I sure hope This denial does not last years. Just a short time, I hope. I have got to be my own caregiver! Take care and thanks again for sharing.