When I retired I had the world by the tail. I was 53 and what I had in mind was thirty years of growing old together. Instead the vast majority of these 11 years were spent in the nightmare that is dementia. My wife Dianne passed away a month ago and I'm 64 and as I look around I see a house that needs work because in the eight years we've been here I haven't even unpacked some of the boxes. I see cats that somehow became old and a car that feels like I bought it yesterday but it's seven years old and has 38,000 miles on it. I see a turkey neck forming and jowls forming. I haven't seen a doctor in seven years. My glasses are falling off they're so old. I badly need to see a dentist. My drivers license expired in 2006. And the reality of how far away I am from any kind of healthy picture is literally stunning - though not as stunning as the mess going on inside me that I'm looking at everything with.
I've had over three years on my own. Nothing really changed in my physical world when my wife passed. I don't go to the nursing home anymore and she is now here in an urn she would have liked ordinarily. Two things have happened though both of which I can feel. The first is that it's over for us, for her, and for me. The decade long horror of Alzheimer's really has ended and I can feel that my anxiety for her and my stress of continuing to face this are finished. The second is that I feel the weight on me lifting. It literally feels like an ice age has left and the entire ground is rising. I think that's going to go on for several years.
The three years I've been here alone I have been on call. I could have used a cell phone and gotten out there a lot more; but, I don't see it that way. Instead I tried to use that time to prepare for this time. I spent a lot of time thinking about guilt for example and ferreting out what was going on inside and what I really did believe about it. In guilt if she was guilty then I was and if she wasn't guilty then I couldn't be either. I also actively looked for where the guilt was and how it was coming out in my thoughts. I couldn't absolve myself; but, when I hardwired them together like that I could absolve both of us. Two sets of rules for one couple doesn't get off the ground around here.
I spent a lot of time trying to accept more fully what was happening and to see more realistically that it was a disease and our experiences were the nature of it. That that experience was very bad for human beings and that's why I had so many problems. I also spent time moving away from Dianne believing that I had to do what I could to prepare for what was coming. My whole world was Dianne which Alzheimer's made very clear to me and that's what I was losing. A glance around on this day confirms that was true.
I called this period The Big Empty earlier and the empty is certainly big. But four years ago I couldn't even face the idea of it and instead had thoughts of suicide or wanting to just drop dead to get out of the nightmare. I had multiple wounds from the horrificly hurtful things close people around me did which were all the same in one way. I don't want to deal with this so you're out. I talked to two cancer survivors in some depth though and both admitted you remember who was supportive and who suddenly disappeared. Well, I was so consumed by so many different betrayals all while we were on our knees - it left indelible marks I can tell you. But in those three years I finally came here too and realized they were all gone and it was only me here punching myself and defending myself. I decided to stop beating myself up, call them the a-holes they were, and let it go for my own internal peace.
When I was in those battles I also realized I had a collection of junk going back to when I was a kid and as part of strangling off beating myself up about what friends and family were doing, I also found and let a bunch of other things go too.
I saw all that and see it still as coming to a point in my life where I go on based on what I believe in. I came to that because what I deeply believed sustained me and helped me when I was emotionally crippled and under mental duress. I took all these steps and I have lived them every day for years because I was desperate, terrified that I was mentally ill, scared by suicide thoughts, and so tired and stretched no word exists in the english language to describe it.
I learned a key thing from the AlzheimersSpouse board. I learned that ability demonstrated out of love and duty are not viewed as power but as suffering. I've known for a very long time that most people can't see themselves in factual ways. Shyness is fear. It isn't cute or anything else. In that same way suffering hardship over years for principle demonstrates character and strength. Measuring your character makes the clowns around you useful because they're miles away and can get away from this quite quickly and still be supportive but even that much smaller test many fail.
Forget your motivation. Understand one fragment of what you demonstrate you do under fire and gain insight into what you are and what you can do. I did that. I'm not a schmuck. I have a degree in unschmuckiness. Getting that neutered the low self esteem I've had all my life which just isn't there anymore. If we don't look and think we never see these things.
How much we change when it's a method we approve of is phenomenal. We can be glum chums full of saddness with no way out and meet someone that we like and suddenly it's a sky full of rainbows. I did that on purpose. Admit that is an approved method of changing how we feel dramatically. And therefore that we can change dramatically quite quickly.
Do you know why? Not because only another person can cause these changes inside you but because you caused these changes inside you. At the wrong moment you wouldn't have given that person a second glance. At the right moment and you change every fundamental thing that was blocking you and turn them into green lights.
That's what this thread is about. The Big Empty looking for the switch I know is around here somewhere because I've seen it work numerous times. And more seriously, looking for the ways to fill my heart with life again where none of the things I had look sufficient and so whatever it is it's somewhere else than where I've been so far.
The general topic is finding things 'afterwards'. All are welcome. I'm doing this to become more easily identified where some of us aren't facing this and some of us are and this makes it easier to avoid such ideas when they're hurtful. The rest of my journey in Alzheimer's is the road back from it and in that I'm not alone at all.
I have no interest in feeling sorry for myself. That will find me anyway. I earned my stripes through Alzheimers so far and I intend to finish that. Also, I'm still researching the same thing I said at the beginning.
Note that I'm in favor of new relationships but I don't agree the other person caused you to be happy. You allowed it by changing inside otherwise it didn't happen. You don't use another person like a battery. You make something a reason.
Well, I think it's going to go in waves, Wolf. You'll be sort of OK for a while, and then all of a sudden have a bad day, or a bad weekend…and then kind of get through it and be fairly well functioning for a while. My really bad time was Mar. 2, the six-month anniversary of his death, and then--big-time bad time--the weekend of Mar. 7 and 8. His birthday would have been Mar. 7, and I literally just hid out in my house for two days in leggings, Uggs, and a tunic…ate junk and watched marathon Star Trek TV episodes and movies, and murder mystery series. I just could not deal with the fact that it was his birthday and he wasn't here. Total wipeout. But then, as the weather improved and the days got longer and lighter…I seemed to be better again. Especially getting back to lots of walking outside has been good for me. When you said about being an Alzheimer caregiver, "..so tired and stretched that no word in the English language describes it."…that could have been me from Apr. 15--Sept. 2, 2014. And that was after watching Larry spiral downhill since the year 2000. It wasn't too bad for several years, but you could see the slow, relentless downward progression. I agree that the other person in the relationship isn't what makes you happy--you have to make yourself happy. And I feel that I do that--I'm generally on an even keel, and like being in my own skin--but that whole Alzheimers bit just about did me in--I literally thought I might drop down dead myself trying to take care of him…and I'm finding that "the road back" as you call it…the recovery period…is going to take a while.
It's been almost 3 years since George died...my journey changes everyday. Some days I am travelling alone, other times I have family or friends with me. And sometimes I make a conscious choice to travel alone as I make this trip. I feel as though I have changed so much since it all started.... I am stronger and more sure of myself in so many situations where I wasn't before. But there are so many other times when I feel fragile and guarded. I will miss him forever I think. I want to be able to share my new self with him and have him be the person he was before Alzheimer's and at the same time I realize that will never be. This makes me sad and I allow myself time to wallow in this self pity for a time until something happens to bring me back to my journey.... My son and grandchildren come over for a visit or my doggie needs to go outside, and I walk in the fresh air and sometimes the sunshine. Now I am visiting with my daughter in San Diego so we are enjoying our time together. I am so fortunate to have support and comfort from my children and my mother to accompany me as we travel.
It's amazing how fresh air and daylight…and sunshine…helps. I have cranked up my walking by an additional 20" per day…try to walk for one solid hour, no matter what…because I missed so much exercise in the bad February weather. I do strength exercises twice a week just here in the house, and I can feel a difference. I kept my hair super-short during the last couple of years with Larry--didn't have time to really take care of it--but now it is growing out longer to where I can just barely get it pulled back out of my face with a bungee. I can't wait to have it long enough so I can get my French braid back in. I am sort of re-creating myself…I've picked out some new eye make-up I'm going to get next month, too. (Expensive stuff…so I'm saving up. Yeah, I know…dumb. But what the hey.) I have that same strange feeling that Bella described. As I'm getting myself back a little bit, I wish Larry could see me now. (Maybe he can!) I feel fragile and guarded a lot of the time, too. It's like I've been in a war, and I'm damaged, and I'm not sure I want people to see me until I really feel more recovered and ready to get back into "normal", non-Alzheimers life. Just one example of how isolated I've been down here in the Heartland…when Mim and I were planning to go for coffee, I was clueless about where to go. For a cup of coffee! After living here for two years and three months! Unbelievable.
Mim looked great, by the way--like a movie star. It was an inspiration to me to do something with myself and quit slouching around looking like something the cat dragged in.
Some days just keeping going seems like a mountain to climb. Some days like today the sick turmoil inside of everything I've lived so long and her actually being dead and gone doesn't care how much I'm trying - it's going to spew it's acidic slime on anything I do or don't do.
I can actually feel the burning inside and can hear my stomach complaining. The heaviness of gloom can make my temples actually ache. I've never had a headache in my adult life but I can feel my left temple throbbing as I type. On days like this my skin crawls and ripples goose pimples over how creepy I feel. The thoughts and feelings are strong and in and amongst all the known parts, there's always something new that burbles up.
At times like this I don't feel strong, I feel that familiar fear that I know so well now and although I do know it, I have deep respect for how powerful it's been at times and how much I was just clinging. A few years ago it was like this most of the time. I was hanging on and didn't know what would happen. I don't want any mental illnesses and I don't want to lose myself and when you've had to just hold on often enough (grab the rope) you've earned your fear and your respect for just how real all this damage is.
Really opening up my feelings about these years makes me want to throw up. Thinking about the dead skeleton I saw which was like having a sledgehammer swung into my face is a horrific memory. I know why I had to go and see but it is a searing image. I've lived 32 days now after she died and that first night I went to sleep I knew there was a very tiny chance I would not wake up.
The raw truth is that what I see around me mostly are cartoon like lives. In my life experience one of the more common things I've heard is "we've never talked about that" or some deflection that what I've just said is uncomfortable in some way. Like mentioning our genitals or talking about intimacy at all. I get asked not to mention the future. I remind people we're talking about the same thing for the third time and they don't seem to be aware of that. I remind people that what was just said leaves out important facts that change the thing.
And yet always when I reach into them and show them a thing about themselves in a helpful way they thank me. That happens regularly in my life where another common phrase I hear is "I never thought about it that way".
I know why. I wouldn't let Dianne change with the door closed. I didn't even let her go to the bathroom with the door closed. I wasn't demanding; just persistent over time and always explaining I wanted zero distance. As a result we both found ways to create a single intimacy where you could fart (everyone does or you die) and laugh and where we learned the honesty and level of reality it takes to be truly 'intimate' far beyond some moron sex act - and where sex evolved because of the value we learned to attach to our intimacy.
People say we were lucky and we said that too; but, we knew why. We blew up steadily the idea of two and always worked towards one. Even our pet name was the same for both of us. That's what I lost after we consciously didn't even want children to intrude. I don't have regrets about having 46 years and 40 or so of those really together. I have respect that I was 'all in' and now I'm all out and I can promise that hurts me so badly I can't accurately speak of it.
"Take a look" I called out yesterday, "this is the other part you never saw. Isn't this great?"
I think you could shoot an arrow through my chest today and I would hardly notice.
But I'm on a rock thats spinning and moving around the sun. There are no days or months or hours. There is only the single tone of time unwavering using now to move the future into the past and if the earth did not spin and did not revolve around the sun everyone would know that.
And on that rock everything I have read, seen, and experienced is exactly the comedy you would expect from beings that are almost as torqued out about time taking away the immortality they need to believe in, as they are torqued out about actually living it more fully where they even get to choose what that means.
Today it beats me up and it's hard. But I don't care what rocks are spinning around the sun. I care where the sun itself is going while the flys buzz around it. You have to tune all the du jour stuff out and look longer term. Months, and seasons, and years. And I have to be able to see myself enough to get information I can believe in. I started this journey where every day was worse than today. I've worked on letting Dianne go and letting Alzheimer's be for a long time now. I've worked at understanding who I am and what I believe in for the same length of time because they're inter-connected.
In my universe the flys that buzz around are called moods. They can hurt you but they always go away and get replaced by other moods which then go away and get replaced and so on. When you include we don't know why and can't control them, the fact they always get replaced anyway makes them unusable for anything - except to get deflected from how grieving and depression are going which are not moods.
If I want life I have to learn to genuinely open my heart to my life. That's not easy, it takes time or an epiphany, and everything else in comparison is like clouds passing. I'll be grieving for my life partner for a long time hopefully less as time goes by. I respect that and don't want to avoid it. But to make grieving itself a thing of value is not sane in my world. And yet, to push now is sane in my understanding of time and the physical world. Not today. Today I get beat up by the powerfully bad things that actually happened to me and to us. I repect that in the same way I respect a tornado or a big storm. It doesn't mean I value them. Alzheimer's can't harm her anymore. It's my job that it also one day is done with me. That I value.
Wolf ......I am continually drawn to your stories. I read them over and over again. They relate so closely to what I've been through, and am still going through. You have a way of spelling it all out and making it simple to understand. .....I want to thank you for giving me something to hang on to.
"If I want life I have to learn to genuinely open my heart to my life." A powerful, true statement Wolf. And it is very difficult to do but I believe we need to strive for this everyday. We need to open ourselves up to the heartaches as well as the happiness in our lives.... It is the only way to fully experience all that life is meant to be.
So Captain Cook or Christopher Columbus don't go on their epic voyages because what if they're not in the mood later. Who gives a flying about moods? I don't even wear a watch. And just like I said the other day, it now being this day, I have had a pretty good day today. I don't care about feeling good today either. I'm on a long voyage and the weather really does swing around - what that has to do with me crossing this ocean escapes me except in how long it takes and like I said I don't even wear a watch so that's not important to me.
Yesterday, I posted what I usually battle myself because I have a screen up here which is the thread topic and here I not only can but should edit less. The reason is anyone here probably has an interest in crossing their own ocean.
What is that ocean? Feeling good. All the demons in Dante's Inferno are inept amateurs compared to that little quest right there even if you start from "go" and not from a deep hole.
And how big is this ocean? You can get 50,000 of them on the head of a pin because this ocean has no size and it has no start or finish, it has no width or depth. You don't even have to move to cross it or even blink. You just have to change how you feel. (and everybody leaves)
Moods change how you feel. It's just momentary but you spin like a weather vane with them. So you're changing how you feel pretty much that often. Look at me the last two days.
Meeting someone is authorizing a change. I call that 'it to you' but it's more complicated. I'm not looking for it to you. I'm only interested in me to it. See, everything else will find me that wants my attention but have I got a course and equipment? Chris could have just blown a lot of hot air but it's better when you actually have a boat. In that same way I can't imagine forgetting what I'm doing. I may tell it to flock off on a particular day because I'm not playing today, or it might be swabbing the decks with me like yesterday, or I might breeze right along like today - and I don't want to be thinking about all this all the time AT ALL. What I HAVE to have though is an actual outlook as part of being me. When I'm dwelling on something too long I can spot it and I do believe in what I'm saying so I do help myself to figure out how I really feel about what I'm dwelling on. That's how I change. Living that is my 'boat'.
I haven't quit smoking even though I hate it because that's a lot of hot air. I don't have that committment to take the responsibility to go through the pain of withdrawal to help myself so instead I continue to hurt myself even though I know that and want to stop. I'm wishing to stop. I'm talking to a hand puppet and answering with another hand puppet which uses up both my hands but I still find a third hand to smoke with while I ponder that and a fourth hand to slap myself upside the head while I do and so on. The only thing an outsider sees is me smoking because in the real world I'm not actually doing anything else however much noise I'm making inside.
It can be like watching a Columbo episode on TV where an obnoxiously loud person stands up between you and the screen saying every which thing while you have to try to see around them except the loud and obnoxious person moves in front of you and goes on about something else. And the less you pay attention to the actual movie and the more you engage bimbo motormouth, the more you're going to be engaging bimbo motormouth. Can you guess who that is? It's us.
Look. Most people stop themselves from being happy. Most people don't know what will make them happy. Some people are afraid to be happy. Many people inately feel it's wrong to step out more although few can answer why that would be. When we get older, bimbo motormouth's constant quality is to talk us out of things. It's also an exquisite fault finder if you ever need a compass.
The thing we're useless at (or insufferable at where the entire middle ground is vacant space), is feeling positive about ourselves and within ourselves; finding what does that; and developing a good relationship with that. Almost everybody has things that are positive where size really doesn't matter. A sunny morning, a good scratch, a pair of slippers, it just doesn't matter what it is one tiny bit. Tell bimbo motormouth to shut up. And give that thing two thumbs up and admit that particular thing is ok. And then let it go and just let it be. Don't expect joy to come shooting out of it like new years eve forever. If you find one of those your mood will probably change. Ignore that. If this was about moods I could have stayed in prison - I mean port.
Another good day. I played one of Dianne's favourite songs I haven't played in many years because it was too painful. "This is for you" I said to no one. But what I'm really doing by that is the 'fighting' I talked about elsewhere. I reclaim 'us' by accepting the pain of things as Bella said as part of the knowledge that to have a full life I must live in the full story. I think it was three or four tries before I could get through You've Got Mail because watching that together was something we did. But I want that to continue in my life (I don't need to explain any example, I just need to find them) and I've seen it three times this year alone on TV usually paired with Sleepless In Seattle just like it was.
When you think about it, our memory is really a collection of moments. It's the moments in our memory that we walk through. That's actual physics too. The physical world is always a still picture of a moment like a photograph and it is only when you add time that experience becomes a movie you are starring in and give meaning to.
Things are happening throughout the universe all the time. Our sister galaxy Andromeda and our Milky Way are headed right for each other. We don't worry about that because we're not aware of it and only assign meaning to things we are aware of. We probably assign a meaning to global warming now which didn't exist as a topic when we were born.
In that same way we battle our tribulations with everything we have and can conceive of where the thing is we could go to the store and get the thing we're missing. Then we would assign meaning to that and fit that into our lives and it wouldn't be missing anymore.
Help teach the worrier not to worry. You're going to help someone. They worry way too much they say and you know they do. Think about this. How could you help them? Stop reading and think about this for a minute. Can you think of something to say to help them?
...... Go back and do this sincerely just for a minute. ......
. . . .
. .
Do you have any more questions on why it makes me so sad that people are the way they are? This willingness and seriousness for someone who doesn't even exist but not for you. Not for you. So it's more bimbo motormouth.
I discovered that I'm making a lot of noise in here but I'm not actually helping almost three years ago. I started the resident thread in April which is where I was then, still in port but knowing I'm going to cast off. I probably should have been in therapy and I was so depressed I didn't know what month it was. I entered a marathon then that's not unlike crossing an ocean because I did have to cast off and become me which I'm still doing now that I'm a seasoned veteran. You worry too much I said to me. Here, I'll help I answered. And I actually did and, God help me, I'm still doing it.
I'm not the butt of happenstance. I'm the guy that flies into the scene calling out "I got you Cindy Lou!". I'm not worried about it being hard, I'm not worried about failing, I'm not worried about not getting up again, I'm not worried about tomorrow. I've learned the difference between shutting my eyes wishing and standing up and facing the bully square on. Facing the very real fear and the very real isolation and all the pain littered everywhere and smiling because try and notice who it is who is still here and doing this now and catch on that the only people who grab any of the rings actually reach for them.
Do you know why a lot of people can't be supportive when we're active caregivers? It's too awful for them. The poor dears. And when we become that same thing because it's too awful for us to help ourselves, then we have met the enemy, and they are us.
Elizabeth, your compliment made me blush! Thank you very much - I don't believe it but thank you!!
To me you seem to be doing fairly well with what life has dealt you, but of course I've only just met you so I don't know what you were like before AD. You seem strong & determined & that is in your favor. But again, we all have things going on inside that nobody else sees.
Tonight I'm going to Toronto to watch the Lakers play with the great tickets I talked about over a month ago. It feels like the same experience almost as when Dianne was here and I went out sometimes and did things partly because I knew I had to.
Those experiences were always similar. Me thinking about whether I really was going to go or not and being involved through some kind of filter or tube where I seemed more to watch myself be there than actually just being there.
I know that I was the same as my cancer widow friend. There were times when I did let go and laughed and talked; but, that's not what I was involved in before or afterwards. The process of getting myself to stay committed to going and my relationship with the fact of me going, being there, and afterwards always dominated my thinking about social engagements.
I have another one planned next Wednesday. I'm meeting five other guys I've known all my life one of which is going to this Lakers game with me tonight. I find I'm having the same kind of relationship with that. Searching for potential conflicts, preparing myself for what I might say, doubting that I should go or want to.
It's been like this for years. Almost no natural me to work with and instead the increasingly defensive thinking and detachment from that which I was taught harshly out of necessity over the years.
It's occuring to me that the clinical damage I keep talking about is staring me in the face and I'm barely able to see it.
I have almost no natural feelings about things such as I might have had before AD. I realized this morning that I have never once looked forward to tonight nor has a thought about me enjoying myself occurred to me. I've learned to get everything ready early to avoid stress so I have my car finally serviced and the low battery replaced, I have a full tank of gas, I have enough cash to cover what comes up, and I have the tickets tucked into my wallet. I'm good at what can go wrong and am still scanning for things. I have no idea and display no ability to look for what can go right because that kind of thinking was burned out of me over many years and the truth of that damage is right in my face if I can see it.
I'm going out tonight with emotions that have been abused for many years where those years have almost no good things in them anywhere and instead are full of most of the worst moments of my life heaped one on top of the other. And whatever I'm doing or wherever I'm going that will continue to be true until I learn how to want things again.
It takes time some say. I agree. We can't change that. I disagree. The person actively helping themselves achieve a goal gets there sooner than a person waiting for time to do what it does. I've already explained I'm going to be pushing all the way through and what I've learned today is that I don't look forward to things because right now I don't know how.
Right now I only know why I don't know how. Because the things I've been through have had real effects on me which is the clinical damage I always speak of. If I want to feel better I'm going to have to help myself learn how to and not just comment.
Note - I said I had killed guilt but there is a new guilt. I have all this and she does not.
I was thinking about whether I know a happy person. I realized I needed some real definition around that because it's all so subjective. I decided that it was something like a person who didn't just always see the positives - they lived that in their own lives. Nobody is completely happy all the time and a human being. Then I realized I had to put an age range because I'm not really thinking about a young child or a young adult so I decided on the age of 55 and the answer is no, I don't know a happy person. And it follows that I'm not going to be that person either.
So what am I looking for? Besides completely aimless, how can I describe what I want so that I have some chance of recognizing it if I stumble across it at the very least? Or better, that I have some understanding of it that I can believe in and use as a guide rather than just hope something better happens eventually.
So I scanned around through people I've known where my tribe still exceeds 50 people today and I'm looking for people who seem to have their ideas about themselves and their goals aligned with their behaviours and how they talk about what's happening in their lives when they're unguarded. I came up with none and that's not a flippant comment. I could fill an entire post about every single one of them and after 50 such posts it would be clear I'm not only fairly unbiased, I'm aware of a thousand nuances and that in each case it's an individual in a similar boat to the one I'm in.
I actually want to learn and I'm not competing because there's no such thing in life except in our own conceits which almost always reinforce a superficiality that is proven by it's own insatiability. Person A has more money or a bigger house or whatever is turning their crank; but, they still don't have enough money or a grand enough house and such concerns creep through their behaviours and their speech whether it's their weight, their knowledge, their accomplishments or any topic across all topics. I don't have to look into them to know that. I can look into myself and know that.
And I do know that real concerns that gnaw at human beings are valid and universal. Whether we have enough money to survive or whether we will be healthy enough are two. So I empathize that I'm looking into a human condition we all share. I also understand humans are the only ones who know for sure that there is such a thing as the future and that self awareness makes such concerns inevitable once we pass 55 as an arbitrary number.
If my topic was readily accessible I would be reading the answers in books and seeing the answers portrayed in all the entertainments. Instead I see the same unpenetrable boundries where all heros and heroines ride off into the sunset to ineffible bliss no one describes because it's the superficiality of arrival and there is no such thing in the human condition. Most stories are overcoming some form of struggle and most stories contain a good outcome. There are exceptions but they prove the main point which is human beings on the whole aren't problem solution driven so much as personal accomodation driven. There's nothing wrong with that and my interest isn't judgemental.
Except that mental judgement is precisely my goal but only if you turn it on it's head. Not them to me but me to it. I'm not researching what humans are with each other. My interest is what I am with other humans and I have that interest because my studied opinion is that what I am has been damaged by life experience which in a way is like an animal who may have been attacked and managed to escape with some damage to themselves. I don't have bite wounds bleeding but what I have is equally serious to my continuance and to any potentially happy outcome.
I know that the majority of the time I had with Dianne we both were all in with each other because it was consistent that whenever we realized we were talking past each other or actually disagreed it was always clear we both believed in the reality of partnership. But there is another truth which is that both Dianne and I had seperate careers almost the entire time we were both mentally all there and that much of the rest of the time we were asleep. We were ourselves evenings where in the last ten to fifteen years even then we often had things we had to get done that night and it was our weekends and holidays we were ourselves.
Most of the time we were in seperate worlds with seperate concerns not shared in order to make the savings that I now live on. While I am now in a seperate world with seperate concerns nothing feels similar for two reasons. Dianne has passed away and I no longer have the partnership. And not only that she died, but how she died did things to me beyond my ability to manage them. Understood; and not understood.
I'm grieving. I'm not avoiding it. I don't see any point in talking about that here where everybody already understands too much about that. I'm not looking to get away or trying to find a way of snapping my fingers. All that is in 'happily ever after' land.
I woke up this morning and I've learned to let my thoughts flow for a while where I had spent years hardly sleeping at all and having nightmares once I wake up (I'm not done) and having years where I seemed to have no say in what I thought when I woke up.
Do you want something to be grateful for? I sleep soundly and I sleep well. I remember my dreams usually and I know why. I don't care. I don't have an idiom I nuture or cling to. I just like more information. And I stitch nothing together knowingly unless you can distinctly see each of the two threads I sewed together and I show my work. Which proves out again and again without fail just like at the basketball game a couple of days ago where I met my friend for dinner first. He told me he had a dream. This is the friend who had mental problems and has since come a long way back to health. He's my best friend and one year many years ago now knowing he couldn't remember his dreams, I wrote down mine and then sent him a small book where I wrote out each dream for him in the sequence I recorded them. He talked about that because he's come to treasure that story. But my interest and my point here is that I knew he dreamed already and I know that he is becoming less self repressed now and is truly getting healthier. He told me the dream a bit later during the dinner and it was the nonsensical things stitched together by our minds in some representation and I know for sure he had that dream. And I am waiting now as one of the many things in my life to hear that he has another. As I said, human beings never arrive.
This morning as I lay there I sensed again how much my in-laws have faded as an issue that consumes me. Almost everywhere I look I can feel the bombs have stopped and I can almost smell what is happening which is that it's quiet now and that alone is going to decompress things with time. But this morning my mind reminded me that even though my nephew and I were arguing an hour before Dianne passed away, it was me that ended it and told him off. I would regret that and at some level I do; but, I also believe our relationship was already over for whatever reasons and that I was human enough to want - and was now realizing I did - have the last word.
It isn't just my friend who's getting better. It took until this morning to think in those juvenile terms that I had the last word on that long battle and I'm smiling as I type this because I'm right in the middle of the opposite of riding off into the perfect sunset so the mind can close and instead galloping around yelling "I won!" for no other reason than it feels great to push that self absorbed lost soul's face into the mud and then dismiss him.
The story is juvenile but the triumph is real and feeling that isn't unlike my friend finally having a dream of his own.
Wolf -- I don't know you but last night I dreamt of you. You were sitting alone across the room. I realized I had just polished off the last donut in a big pink box and felt a little guilty for not offering to share. Next scene -- a lovely young girl was showing you elaborate tiny floral arrangements, orchids arranged in unique and beautiful ways. You were amused that she was so earnest and yet wanted a lot of money for each arrangement, far beyond a reasonable cost. I woke up then, but I have a feeling that somewhere, some place, in some alternate universe you are now the proud owner of a dozen tiny orchid arrangements.
Hi Bunny's Lamb, that's not suprising because I'm not only one of the few males on this board, I'm always saying stuff and I open up a lot more than the average person. Thanks for sharing your dream. Perhaps in some alternate universe there is someone who is the proud owner of those orchids; but it is not me and a lovely young girl I agree is far beyond a reasonable cost. Instead a big pink box and exquisite orchids are both in the eye of the beholder.
One of the dreams I wrote to my friend was when I was being chased by a bear in the woods. I was a little boy in shorts and running shoes and I scrambled up a tree trying to get away from him and as I scrambled higher and higher into the upper branches, I could hear him and feel through the tree that he was gaining on me. I got near the top and stuck my head above the canopy and the propeller on my beanie and cecil hat started twirling gradually starting to lift me above the tree. The bear lunged and was so close he snapped off one of my running shoes but I was now rising and could see his dark shape rustling in the tree top as I began gaining altitude and sailed away. All of which is impossible but that was one of the dreams.
Last night, I was somewhere like Amsterdam lost as usual and not panicking about it as usual but never getting anywhere in finding my car or recognizing where I am. I was getting down about not knowing where I could sleep because I didn't have any shelter when the van I was in driven by a lady I didn't know and her friend pulled down this lane by a river that seemed to be a dead end but she gently drove into the wall of the house at the end of the lane and it swung open revealing the main floor was a garage she drove the van into. I could see the river and other houses through the windows on the other side and noticed the van was some kind of sleeper camper van when I woke up.
I've looked for my car in my dreams for many years and before Dianne had AD. I do notice that having told the story about writing my dreams down and then writing them out later, they're quite accessable to me and there wasn't any car hunting in them. I don't worry about it. They're dreams. Let there be dreams. I think the lost car may be me trying to find who I am and not knowing. That's pretty accurate today just as it was twenty years ago.
I went on a lunch today with six other friends I've known a long time and everything was going fine until I felt everyone was arguing with me and ganging up on me and as the food arrived (finally) I threw my napkin down, paid my share of the bill, and stormed out.
I've talked to one friend who said everyone was stunned by me doing that and they talked about it for quite a while. By the time I was home and had calmed down I realized that whatever gripped me then, I stopped listening and couldn't hear what people were really saying and instead seemed to react more defensively which with this opinionated crowd swamped me. My friend mentioned the phrase 're-socialization' and I think that's pretty close.
I've apologized; but, I have to face the truth that I'm not as ready to face things and I'm not as over any of this as I care to believe. I said I would fall down again and I have. I think that level of normality at the speed everyone talks and we all have so much water under the bridge no quarter is given, swamped me because I'm too fragile for that still and I see no shame or reason to do anything other than learn from it. It's all understandable but it's also a shock to have a meltdown like that and realize afterwards it was all me.
Not ready for prime time. I get another shot at it next month and while they had this lunch out here where I am to get me to go, I'm going to the next one and I'm going to do better. I was looking for fun and instead I couldn't cope with it. I'm coming up to bat again though, so we'll see.
Imagine driving for over an hour to have lunch with someone and they storm out in a huff when the food arrives for no reason that you can understand. I'd be stunned too except it was me who did that. On we go.
True good friends will completely understand. Go again next month and walk again if you feel like it! Am I enabling bad behavior? Probably or maybe not! I think you are moving along just fine.
Let me see…..according to your title the most important person ever in your whole life died a little over one month ago? No matter how much "water under the bridge" happened before it was never the finality that is death of your love.
I snapped at the bank when the third person asked about my husband and when informed that he had passed away in Jan. made the comment, Oh that must be such a relief!" I loudly informed them that while it was probably best for him it was NOT a relief to me. I would take him back in any way shape or form. Then I burst into sobs. People were very uncomfortable and I left. It happens and it happens without you knowing it's coming. I keep trying to be kind to my own self and give myself some slack. I hope you will try to do the same.
They'll forgive everything because they understand right now better than I do I suspect. I went for the first time in a long time looking forward to fun and instead I had some kind of meltdown right there. That's a little stunning to be honest. I also need to be more honest with giving myself a break and with trying to sit back for a while and not just charge in. I don't really know.
Sounds about normal to me. Good Lord, Dianne has only been gone since Feb. 18. You just weren't ready. Friends will understand. And if they don't…they're not your friends. Try again next month if you feel like it. If you don't feel like it, just don't go. One of my relatives insisted on taking me to lunch very shortly after Larry died. It was just her and me, in an almost-empty restaurant just minutes from the house. I was very uncomfortable…just wasn't ready to be out of the house and doing something social, no matter how simple and non-threatening. And also, like jules* said above, I would find myself "losing it" unexpectedly and sometimes for no real reason--overwhelming grief and tears…and the complete inability to function like a normal person--it would just come out of nowhere. A world-renowned bereavement expert spoke at a seminar I attended quite a while back--years before the Alzheimers issues cropped up. He said that grief makes you crazy. He said that if you didn't have a major psychiatric diagnosis before the bereavement, that you would come out at the other end and still not have a major psych. diagnosis--but you could sure exhibit some bizarre behaviors while going through the bereavement process. He spoke in all kinds of scholarly language, showed scientific pictures of the brain, talked about the research,etc., etc.--but then he would just kind of shake his head and say, "Grief makes you crazy."
The first thing is you have to understand that our battle with AD is over and I wouldn't be thinking like this or saying this if it wasn't.
I hate my life. That's the sanest thing I've said in a long time. For most of a decade my life through the illness Dianne got has been abusive to me. I had to learn over the years to keep dumping all the parts of me that mattered to keep going. I learned to allow her not to be responsible for her part. I learned to dump my feelings as she couldn't do things and then didn't know me and then pooped anywhere and then couldn't walk. I learned to ignore the needs screaming inside. I learned to shut off almost all feelings. I learned to keep going when my mind was full of ending it and that large parts of my own personality had cut itself off from what was happening and just hid from everything.
I hate the life I now face and I can prove that that is sane. If I could choose any path, any outcome, this would be about the last one I would choose. She dies like this, dementia does all this, and then from that sh*t, I get to learn how to 're-socialize' with the pieces left. The only insane thing would be to NOT hate that.
Large parts of me are so tired of all this that I can feel it in the marrow of my bones but it goes deeper than anything I can reach with my mind. It sits in the gut like sour acid for the single reason that long term abuse does that to human beings.
I shouldn't have to argue this here but can make a very strong case that dementia caregiving is long term abuse.
What's hard right now is the noxious mixture of feeling that abuse, the grieving, the isolation, the fear, the unknown alone and at the same time trying to find resources inside to now try to overcome those things and open in some way to a 'new' life where the things I have to do that with are things like depression and anxiety. None of these are words. They're all realities I live where I had a serious anxiety thing just this December when Dianne had gone in and out of palliative care.
I spent a weekend with those same guys I went to lunch with back in October. It was fine. It was different. I was still in the long continuum of my marriage. My life had meaning to us and as butchered as that was it was still real and she did still need me.
Now no one needs me and I don't belong with anyone. Not in the way I mean it at that deep human level. I have no 'grands' or children. The most meaning in my life right now is my cats and what I want in life is to not have to face this. What I want is to not have to face this so much I'm tearing up as I type this because that's the real truth which describes the entirety of my life as I sit today.
None of this is news to me. I know these things as part of the 'work' and 'fighting' I have spoken about for years. I know that many of us share large parts of the same thing and I don't believe our uniqueness is the fundamental issue about that. I believe our personal experience of the sameness by the very personality nuances that our spouses lost is what makes it seem that it's a solitary journey when it's not.
I hate what all this has done to me and what all this has cost me so much the extent of that keeps going long after I run out of words. In fact I'm capable of expressing some of that more intensely but there's no point especially here. It's so bad that turning 65 which I promise you I can document is twisting up 'normal' people I care about isn't even on the radar. Make that number 95 then because the point remains the same.
I use metaphors like pollyanna and the valley of death and so forth; but the issues are as real and serious as they are unseen. I'll tell you something in metaphor. God does not need armies. The actual battles aren't the swords and guns men like. Power has nothing to do with this and there is no valley. There is only me and what I choose to believe and how I struggle for it. The evidence I have proves that's always been true for me even though the types of struggles and what I believe changes. I believed in us and now I have to change that to believing in me.
Pollyanna might now stand up and say "I believe in me" but it doesn't work that way IMO. And Alzheimer's really is in the past in every way except what I still carry which is plenty right now still of course. And I really am grieving where Dianne died barely two months ago. But this is a road I chose over three years ago and even though I fell down yesterday and got hurt, I believe that has to happen and I have to be willing to keep going and I think I am.
And what is this noble goal I dedicate myself to? To feel normal again and be able to have some fun. I know. It brings tears to my eyes too.
Just take little steps, Wolf. One step at a time. I don't have any great words of wisdom, because I'm going through the same thing. It has been years of abuse, that's for sure. I still can't believe it when I wake up in the morning and find that I've had seven hours or more of deep, good sleep. I was sleep-deprived, with my nights broken up, literally for years. I didn't even think much about it…it was just normal. And going from day to day without dealing with incontinence, or trying to communicate with someone who was (no matter how well-loved) crazy as a bedbug…it still seems strange, and I think I'm going to like it…but I'm not used to it yet. I guess the new "normal" doesn't seem normal yet, but I'm taking it slow. Alzheimers is just about the only disease that destroys the caregiver as well as the patient. So we are very damaged coming out of this nightmare…or maybe "changed" is the better word. I know that I am. I can't speak for others, but it's taking me a while to find my feet. Perhaps it is the same for you. And by the way, having children or grandchildren is no panacea. Families can do you in.
I don't know about children. We both knew we were ready to be good parents by the time we were about 45 and we talked about that but it was way too late. Those poor kids would have had our noses. I hear you though.
By the way you are more than welcome to use this thread as you please. Part of the journey is to conceptualize in more 'intimate' detail what journey's afterwards are. I can only put my own up which is limiting. Anyone who wants to talk about their own experiences in the afterwards are more than welcome and are actually helping. I think one area that can use shoring up is deeper information about what goes on where people share the experience as well as the fact of it. Frankly, I wouldn't mind reading more about that either.
For example notice the reaction to how you speak here recently on another thread. I suggest that knowing about your intent to pursue historic novels and your move to New York in the future are things already shown to be of interest which can be shared and which adds what I'm calling intimate detail but which is a more looking into other's worlds more deeply in this part of the experience. The widows thread is important and there are stories there too but I would like to follow along more and see more detail in this part that we all go through.
I have always learned and I have always taught when I conceptualize for someone (which is often me). I believe that has value and I could use some help in this myself. Maybe I'm wrong. It wouldn't be the first time.
Those poor kids would have had our noses. I hear you though. (Quote Wolf)
This is what will keep you going Wolf. Your nutty humour. At first, when I laughed too hard after Dado died, I felt guilty. Now I feel his acknowledgement, maybe I just "think" I do, but I always think of him and how he would roll his eyes when I was acting nuts, and say, "Well that's my wife." He was awesome, he loved me for things that no one else ever did. A hard act to follow, as I drive many people crazy.
I was mentioning on another thread how my "journey elsewhere" was so great, then I came home to three days of the saddest most missing him I have had in awhile. However, I have finally learned, that as I am a "normal" person, just wait three days maximum, and this too shall pass. The days did pass, and then the dragon fruits and plumerias and cats and Hawaii, became beloved to me again, such a relief. I also believe God is close to the brokenhearted. We dig so deep in to the reality of what life really is, we accept it if we are lucky, and then hope to find some years of joy ahead.
OK, on this "Off-Topic: Journeys Somewhere Else" thread I will chime in once in a while and update everyone with the riveting details of what I'm doing in this new, strange world of No Alzheimers. And I hope others will do the same.
Here goes: Today so far I straightened up the house, worked on my French, read parts of two books about the French and Indian Wars, played the harp, and now am going to the grocery in order to be home in time for the school bus.
Compartmentalization is a concept/behavior that is probably very useful for a caregiver. Generally, men are better at this; women seem to integrate experiences and emotions in a way that makes compartmentalization difficult. That said, I believe that it can be learned and I believe that I am learning it as a survival tactic.
By learning to "close the door" at times on the pervasive feelings of sadness and loss, it helps us to (as Wolf's friend coined it) resocialize. Maybe we don't close the door, but ask sadness grief to sit quietly in the corner while our concentration is directed at something different. That doesn't mean that we aren't having those feelings, it means that we aren't giving them all of the real estate in our brains.
elizabeth* exemplifies this well and especially how daily structure can facilitate giving other activities (like reading, harp playing, walking) space in our brains, too. Joan is doing it by getting out of her comfort zone and driving to a concert. And, just like playing the piano, it takes practice. Daily practice.
This is a good thread. Some days I don't have the resolve to read another anguished post. Not that I don't care, just that sadness can wear you out. I like this idea of penning examples of how we are dipping our toes back in the pool of life. It gives me ideas.
If I have learned anything it is that 1) I am barreling towards death, no matter what I do or think, 2) that being the case, I might as well live life as richly (experiences and relationships) as I can, 3) and in order to do (2) I have to change my thinking - the only variable in this equation of life.
Three weeks ago I renewed my membership at a small gym and then I didn't go. Yesterday I made a deal with myself that if I went and rowed for twenty minutes I could come home and lay on the couch the rest of the evening. I did go and I did twenty five minutes just to flaunt to myself that I could do it. I have to keep making rules for myself to get through each day but then remember at some point it's okay to change those rules as I need to. Perhaps in a few weeks when the weather might be nicer I won't want to just lay on the couch and I will have to change the incentive to get to the gym. Or maybe I will like to go and won't need the push. I used to like it. That's my strategy.
Coco, how does it feel when others tell you you seem to be doing ok? We know it's all tenuous for some time. What happened to me at lunch is that these are the boys and we've each got so much water under the bridge and have all been completely drunk and passed out at some time or other in the 40 years since we all played basketball together that nobody gets any slack even when Dianne died just a month and a half ago. Leaving like I did is nuts but it was my turn to be nuts. I've washed all their feet so their giant egos are stroked and it's all good. At least, it's all as good as it gets.
I do hate that all this is going on but I agree with Marche that time doesn't care whether I sit here in misery the rest of my life or get somewhere with it because it's barreling along. I also agree with Marche that men are superior. Wait. I'm being told the missing words there are ...'at lifting'. Men are superior at lifting things. I do agree women tend overall to be more integrated and to access their emotions but I disagree women have more emotions in the same way I disagree men make better leaders. They don't. They just crowd women out until sensible people tell them to stop. Great post Marche.
I think this post war period is a time hopefully to begin to move away from caregiving and dementia and to try and figure out each part of what our future holds. I can't do that. One of my breakthroughs was in realizing I've never been like that before where I've never been able to answer the question "where do you want to be five years from now?". My interest in knowing that is only slightly less than my complete lack of interest in the entire topic. Re-learning that's how I am means I don't worry about those answers the way I used to. I need to evolve a life for myself and I get that but concrete answers that have a chance aren't going to come unless I do some of the internal things that also help me meet those moments. It wasn't enough to remember I really don't care to think like that. I had to be ready enough to accept that and have it hold.
I think nobody helped me at lunch and I've paused just now because I get another shoe dropping. Parts of them need me in the same way I need them and these guys aren't good at emotional sharing. They don't want me to be fragile anymore but they do want my butt back in the group. It's really hard to move towards a neutrality in general mood that has it's own momentum and I think that's a journey of many individual steps. Every last thing that I have accepted and learned to value has been helpful to me. I don't want to risk too much and lose more things. But that's the only way I've ever grown or moved forward. My main job these days isn't to 'move forward' except in the sense to begin re-arriving into myself. Only I know what that means but I can see it means more housework and I have had more fresh sheets these last few months than I have in years. The first year alone I slept under a comforter on a mattress because I don't know why but it all seemed inaccessible. This morning I put fresh sheets on again and I'm not lying when I say I look forward to snuggling into bed and reading for a while as my cat rolls around looking for pats. My counters in the kitchen are free of things after many years and are clean. I'm watching a show called Human Universe at 10pm. I want to watch the NCAA tournament on Saturday. I've finally ordered new glasses today after having the first eye exam in just about 10 years. My cataract isn't much and certainly not worth doing anything about and Scleral Buckles (my right eye is held together by a plastic ring inside) should last the rest of my life. I was too afraid to ask how long they last. I was afraid how the catract was doing because I can see the floater in my left eye but was told not to worry and if anything happens I can call them right away.
I was so afraid to face all this because so much has gone wrong for so long and I shrunk a lot these last years. I can call someone now and no, nothing to worry about right now. It isn't just that those facts are like sunshine in my life - it's that I finally did something for my own health and continuance. We each have our own things to face and that was a massive step for me to take. Dreadfully easy of course but that's not how this works. At least not for me.
I remember looking out the window twice in the summer of 2011 when Dianne was an energy bunny tearing the house apart. My life is a mess but I've also come a long way and with any luck I have miles to go.
The difference between being in a hole and coming out I think is right in my own life lessons of the past 24 hours.
The lunch: I got no quarter with that group even though Dianne just died a month and a half a go and that is appalling but that's how they see things. I was asked to thank them for coming out because it would mean a lot to them but no one else has been asked to do that even though other lunches came before that one.
I woke up this morning thinking about all this and realizing I see things the way I just said above. But I was asked to say the word Ferrett and I did. Ferret for coming out I really appreciate it. In other words, it is what it is and I'm not going to change them and my future is about seeing them once in a while but they are not my future. So I said what I was asked to and even though parts of me are upset - I'm healthy enough to know all this is kind of high school really.
The optometrist: I've know for a long time my glasses are scratched, broken, and I have a cataract that my doctor spotted over eight years ago and where I can see the floaters moving around. I've worried about it and felt oppressed by many things, this being one of them and I'm not kidding. I worried that my eye would get worse and I would need an operation and how could I do that when I had no one to drive me and Dianne needed me?
It's in the post above, but I woke up this morning thinking about that and I'm healthy enough now to have gone to an optometrist and faced all that (which took me a few tries), and as a result I'm getting two pairs of new glasses and I now know my cataract is small eight years later and "certainly not worth doing anything about unless it changes and if it seems to change call him right away and WE can look at it right away. My scleral buckle I worried about for years because it's plastic inside me - how long does that last? It lasts as long as I live unless something goes wrong or my retina detaches again. If that happens "call me right away".
....
I know some of what I'm going to face is not going to go well. That's a much harder challenge. My teeth have a split tooth, a chipped tooth, a crown that cracked off and my lower gums are just a memory. I'm going to find a dentist soon though and get started. I'm not going to like what I hear I'm in for.
But none of this in my opinion is about the actual things themselves. It's about how I am in those things. And even though I feel quite lost in my world and I've got lots of issues - I'm ok. My job is to keep working on myself and at the same time being protective of my raw state and my own feelings. That works which the peaceful silence around my x-friends and my x-inlaws proves out. Life is what it is and people are what they are. That will be true whether I'm here or not and actually has nothing to do with me personally.
"My job is to keep working on myself and at the same time being protective of my raw state and my own feelings." That's exactly how I feel, too. Great point, Wolf.
I can't believe your friends expected to be thanked for coming to lunch closer to where you live. After all you've been through? Give me a break. And I also am way behind in routine eye exams and doctor/dentist routine appointments. I don't even go unless I have a problem. That has to change, of course, but I don't quite care enough yet.
The last twelve hours or so have been nice. After supper and dishes I walked in the park for 40 minutes. Cool, quiet, gray…pleasant. Then I watched a funky, sweet 1980's Scottish movie on Netflix called "Gregory's Girl." Then I went to bed and read about the French and Indian Wars for about an hour…turned off the light and slept dreamlessly for seven hours or so. Again, unbelievable for me--but so nice. I had actually forgotten how nice a peaceful, long night's sleep can be. I woke up around 7:20, opened a couple windows (briefly) and misted my bed linens with lavender water like I always do, and sat down with that first good, hot cup of coffee to look at the headlines and see what my colleagues here at Joan's are doing.
This is all so normal, boring, and mundane…you all are saying, "Well, so what?" I guess the "so what" is that for an Alzheimer's caregiver this would not be normal at all. "Normal" for a long time was broken or no sleep, poop, falls, agitation, ambulance calls, body hurting from doing heavy transfers all the time, etc., etc., etc. The new normal has some big advantages, that's for sure. What's bad about it is that Larry isn't here any more. (Of course, he hated walking, and he was a restless sleeper at the best of times, and he would not have watched "Gregory's Girl." And we drank tea in the mornings, not coffee.
My friend has now become a great example. He was the one who asked me to thank everyone. My other friend I talked to last night didn't know anything about it. The first friend has his own problems which are quite serious which I've talked about elsewhere. I woke up this morning put out that he required that.
As you say though Elizabeth what is the point of saying things 'mundane"? Because we are choosing. Because we are in the same boat as Joan. Because my friend is struggling still with something that happened to him closer to 20 years ago - not the ten I remembered recently.
Because my poor friend still doesn't believe but struggles now to, whereas I already believe and still struggle. Next year and the year after will show what I mean because what I believe is that I'm going to heal quite a bit over that time and I hope he does too.
I believe it's me between the two of us that is the more fortunate because I believe life didn't break my bones as severely as it broke his. Those comparatives don't matter. I feel optimism about my future. That's priceless.
The only thing you can change about your friends is the way you think about them. So, be prepared next time. Give a 30 minute "thank you speech." Thank them for every thing you can remember from the last 40-50 years and make some of it funny. Ultimately, have them begging you to sit down so they can move on, and perhaps "the thank you incident" will be put to rest and the ridiculousness of it will be apparent.
And maybe this is why I only have a handful of good friends!
Marche, I think that's right about friends but I keep talking about 'me to it' not 'it to me' and in this case that means I can't look to them to help me heal and have a life. But I can and am looking to myself to do that. That lunch four days ago isn't bothering me anymore because I've chosen to go on the adventure and triviality like that (important in the moment not actually even a blip in the entire sweep) won't stop me from being a pain in the arse in their lives.
I'm much more interested in taking my share of responsibility in things and coming more fully into those things. I want that because I did pay my bills all the way through this and I did grocery shop and cook and I did function fairly normally in appearance to most, most of the time; but, I wasn't here. I do the things I have to so doing the things I have to isn't on my radar. Having feelings I learn to value again and bringing more Wolf into the moments is what I'm after. Also becoming more comfortable with all the moments including Dianne and Alzheimer's because I may visit at first but I'm planning to move in.
That's why I invented the town Seaforth. It's a small town in Northumberland and it's full of odd things like that I don't clean poop anymore and that Dianne is free of this. It's slang from 'and so forth' which is the way I create an actuality in my mind of the concept and give that more importance inside me. One of the things there is that I'm less tired of feeling bad than I am of feeling nothing much at all and another is that ALL who wish to go from one state to another MUST learn how. That's true of every last thing in life in my opinion.
The truth? You want the truth? Just a year ago I would have either not gone or been badly hurt by what happened and there wouldn't have been enough inside to react and resolve and then let go. What happened, who it was, none of that matters that much. It's me that does and living that is what I'm re-learning. The truth is that it's a triumph to have something genuinely upsetting like that happen and then get over it intact. That's a new character in Seaforth. Sometimes a lunch is just a lunch whoever was an arse that day and that's not close to a reason to change things.
Damaged people over-react to outside stimula and under-react to inside desires. That's strictly my opinion. I own my own space and I run the place. That's reality. I want much more. That's my goal. I have no interest in whether it's a harp and fingers that make notes - I'm re-learning to be me there again and even to relish that. Not to skip happily the rest of my life or to turn into a saint or to lash myself. Just to know that I can and do relish moments. When I find them, I move them to Seaforth. And so forth.
Long ago my mother had a jewelery box. It was jet and glossy black and it had a little key underneath that you wound up so that when she opened it a song played and a little ballerina stood up and twirled around and around. Dad was 16 when the war ended and 23 when he immigrated to Canada. He was allowed to bring $50 and he had to find a job before he could bring the rest of us over. It took him a couple of months to find someone who would give a nazi a job. It was a couple I knew as Ma and Pa Kettle because he worked at their service station for a few years while he earned his mechanics license and they kind of adopted us. My first living memory on this planet was on The Prince William on the way over throwing up over the side while my mom held on to me. It could have been the Mayflower I would still have thrown up.
That little boy is inside somewhere screaming. I know the second that started which was the second my mind was seared by the sight of the dead person that used to be Dianne just a few hours before when I told her it was alright to let go but went home to make dinner and get abused by the nephew I was once very close to just before coming back.
The nursing home lost the pictures I had placed in the window case by her room door and the funeral home just caught on that I was in fact right that they never charged me which I pointed out twice to them and had it explained once again how the system that didn't work - worked.
From those early events I always knew who I was. There was a continuity I never questioned which was that all the events of my life felt continuous like one single movie. Alzheimer's broke that in me. All of the worst times of my life are within Alzheimer's. When Dianne started acting strangely, when I found out it was AD and she was going to die, when I put her into a home, when I suddenly saw that I was seriously screwed up, and when she died.
I realized recently that among the many thoughts that run daily there's been a change which is that the quick sketches of interactions imagined are all now willing and opening interchanges always with females in mind. I'm so tired of AD distorting everything but I'm a veteran as well and I looked at all that the same way I wander around everywhere else. Nothing honest is off limits. What flooded in was that warmth and cameraderie that comes with people enjoying each other's company and frankly the fun and good feelings that come with that. I sat right here and called out to Dianne downstairs "hey, look at me" because it's been 50 days exactly and here I am thinking about other women.
(My mind flies to give her lines. She holds up a black Italian mourning outfit and pretending not to have heard says "here, I made this for you, try it on".)
Look, the thing is that I've changed a lot. I'm the same guy I sleep with every night since that stupid boat trip and Ma and Pa Kettle; but, I have dramatically changed. I'm just beginning to move in here and right now it's not that I'm still changing dramatically but that dramatic changes have stopped and with a three year degree in this, I'm catching up. A part of me inside is still screaming and I would describe myself as still dysfunctional but improving. But there is also the new moments of optimism and even confidence which I hadn't felt in a very, very long time.
It wasn't that long ago I finally got up the ability to go to a restaurant alone and eat dinner. Just that, was a real obstacle. I've changed because I had to learn that just that stops me from living and it's not silly. It's very real.
I didn't ask to change. I didn't do anything to cause it. My life turned upside down in ways I never imagined and even though I wasn't sick once in those ten years, I have been seriously harmed not just by what happened to Dianne; but, directly by Alzheimer's.
Alzheimer's existed in Dianne and when she died it's existence ended. I can say my wife died and I get an "I'm sorry". I don't have to say how. I'm mourning my wife's death. I'm not mourning the death of Alzheimer's. Instead, it's imperative that I demark strongly that it ended IMO and make strongly apparent that I need to disentangle from it. There's no cross connection between the disease that did this and my love for her except to blunt the memories in situ as us fighting it's bullsh*t and opening the windows widely on everything else. She would want that too I'm quite sure. Remember me as I truly was. Easier to say than do.
I'm not wearing the black dress. I'm going out, The black dress is a conceit in my case because I don't believe in it one tiny bit. I'm not a widower. I was married yes but that doesn't make me anything now or define anything about me. I make me now and I don't know what that is yet. And by now I mean when I feel like it. I'm wearing the red dress when I do.
I'm an honest reporter. It's changing I think because I spent three years figuring out what I believe down to the core and I recognized that because everything else melted away where only true things held. I don't make this garbage up. That's how it was. I recall one conversation with Vickie well over a year ago saying the hard part is believing again and when I found those things and felt like myself much more - I also saw that it wasn't the same as before.
And do you know what came out of that? I get to be me. Not only that at all. But that if I'm not willing to be me then I'm wasting my life. If I don't have permission to be me I have no life. If I can't say why I don't deserve what life I can get - that just has to be a mental problem I have. That Dianne would want me to be happy and that being happy means living life fully. That if that feels oppressive, and I can't see what's holding me back, then it must be issues. Real ones like grieving. Like loneliness. And artifacts like depression earned from years of denying ourselves while being water boarded by life. Anxiety earned from a decade of stress. You know the drill.
I'll tell you something I believe about therapy. It's good. But until you believe, you're in therapy. And therapy doesn't help - until the very moment you believe. Anyone? Bomp bomp. Chicka-chick-caw.
It's going to be up and down for a while but I know where I'm going. Or at least that's what I believe. Bomp bomp.
I like the way you put this: "Depression earned from years of denying ourselves while being water boarded by life. Anxiety earned from a decade of stress."
I would also add that I think that I have experienced something like a genetic mutation of my psyche. Although this is not understood by people who have not traveled the road with a spouse with dementia, it should not be news to anyone. When a long-time POW is released by the enemy or an inmate is released after many years in prison, nobody expects that the person walking out will be the same person who walked in. It's as if their mind's DNA sequence has changed. I think that is what has happened to me.
That's why I sometimes get impatient with talk about "the grieving process." How about the permanent damage that has been done? No "process" is going to fix that.
Myrtle and Wolf, I feel exactly the same way. Wolf, you said it just right, and Myrtle, you summarized it so clearly. I've been trying to write a post in response, but I truly can't put it any more clearly than the two of you did.
Guys, I agree there is damage and some of that may be permanent. All we have to do is turn into it and it's tough to overstate the power of what has all happened.
But I want what I can get and to me that means all kinds of things and all manner of ranges of things from the very small to life defining things.
I'm not going to listen to any of my own whining because I get that there are tons of things I can't have anymore either which have zero to do with dementia and I just accept those so why am I treating just the things caused by dementia differently?
And the answer there for me is because of what dementia did to me and so I'm like this now. It's right here that I came in and would go around again in this circular door - but, I'm not. What causes what doesn't solve. I just choose and everything else is words.
My first memory really was puking my guts out about life and in so many ways including this thread nothing has changed much. I want it though, and whether I file a thing I can't have anymore under dementia or a thing I can't have anymore under normal doesn't enter into anything except to help remind me I'm an idiot so I might want to keep my eyes on the road. And avoid the roundabouts for now.
Yesterday was a bear of a day. All day long from the moment I woke up I felt that familiar dis-enfranchisement and victimhood. I didn't realize until later in the evening that I hadn't only spent the day mulling old antagonisms - but that I was also making them up so that I could stoke that feeling without seeing that I was doing that. I spent many days like that when I was squeezed almost out of existence by Alzheimer's. My only job was to watch over Dianne which wasn't actually necessary but that's how I thought and I believe that also protected me from facing the big hole that was my not-life.
In fairness of course we don't have much to work with before our spouses pass and I have no regret that I didn't put on a cape and fly out my window to save the world or myself while my wife was dying in a nursing home. I don't feel any pressure to do that now either.
In fairness also, it would be ridiculous for me to think I just have to go out there and figure it all out and rebuild after the tornado all by myself and without any tools.
Oh wait. That is what we're expected to do. Pay both directly and indirectly so that our doomed spouse gets every support they can get and then bye bye thanks for paying where we would be well served to check ourselves into some kind of rehabilitation program that helps the victims of abuse called Alzheimer's but only the quite well off could afford that because we would be paying full tilt.
Doing for ourselves and spending for ourselves the way we did for them doesn't even enter our minds usually. Who thinks clearly during grieving anyway? I don't regret one thing I did for her or what it cost us. I notice a grand canyon sized disjunction which even I, one of the few who talks about this, am also in.
I would never pay the kind of money we paid to help Dianne in Alzheimer's on me to help me in Alzheimer's. What happens instead is that once this is over we don't get to address our own equally real damage because it gets masked by grieving which begins then.
The completely unequipped dementia spouse comes away from the long earned issues with one of the most powerful issues in life beginning to unleash. I doubt the dementia spouse is capable of 'normal' grieving because I believe it's rare for anyone to come out of this undamaged in clinical ways. We can argue that clinical (read: diagnosable by a doctor) conditions such as depression and anxiety don't mix with grieving but I'm not buying.
What's the point of saying these things?
I don't go through my days trying to find my way prima facie. I don't face my day trying to get better. I never wonder why I feel like crap so often, why my thoughts are scared and dark so often, why little things have huge reactions randomly. I know why those things are going to happen for some time to come.
Because otherwise I've solved depression while I'm grieving or worse - I don't want to know about any of this anymore and just want to get somewhere now. You can file that one under anxiety because there's nothing real about having that thought right now. Not in my world.
Or perhaps I'm making life decisions while my grief dominates my depression. That sounds like a great idea. I could guess who I am along the way. That is the opposite of anything that would work for a person like me.
If we're doers - not thinkers, then that stuff does work. Some of us mostly have to plug our hands and faces into something and that does a lot for us. Getting involved in something is usually theraputic regardless and early the one thing may be to not make committments before testing those waters for a while.
For someone like me, I need milestones and markers set in granite who's only purpose is to be reliably accurate. My opinion of the advice around me is suspect because it's all from the kiddie pool and I don't mean to be flippant and can show myself that all advice has reflected the views of those people. Get back in there people advise guess what.
I know I need to re-invent myself somehow and there's a huge part of me that just wants this behind me somehow and to live normally now. The range of thoughts and feelings within a single day at times is stunning and in all honesty within a single hour.
In the background of all this I have my markers and I can see that I'm getting things done, I'm facing the things I need to fine, I'm throwing out things of hers that are brimming with meaning while I'm trying to feel some appreciation for the things I have and am keeping. Mostly I'm still the robot I learned to be and the self-interest and feelings are still largely squished in the corners I pushed them harder and harder for ten years.
But the most closely watched markers are the positives. A nasty word because it's fuzziness distorts that nothing is more valuable in anyone's life than their own 'positives'. I don't sit there anymore dwelling on whether I should go out. I don't know where to go yet the way I hope to. I don't feel oppressed by how dirty the house gets the way I did and I don't imagine I live in a college dorm anymore. Instead I do a lot more and feel that acceptance. I don't feel pride so much yet and I have no cycles yet to imagine what I will do with the house.
While a big part of me is so terribly motivated to be ok right now and put horrible things behind me (not Dianne so much as Alzheimers), I have a patient to take care of for a while yet and my real job is to try and not forget that I have been abused badly by life in the same way I never forgot my cat was. She's not an abused cat anymore and she doesn't flinch anymore and she has become demanding at times and after seven years of having her in silence she began speaking and now loves her voice.
Everybody can do what they want and everybody can think what they want. In fact, I'll defend you in that. Right now I'm healing an abused animal and this isn't the first time. It's just the first time I watch first person - in my own face - prima facie. There, you now speak latin. (That's faw-chi if that's new).
"How long is this going to take Wolf?" Ask Tahia the cat. You'll get an equally meaningful answer which is that she answers, not what she answers, where the real answer is that it's going to take slightly longer than the last time I ask that question since having arrived I won't have it any longer. Years. Here, help carry this, will you?
Yes, Wolf, I will help you carry yours if you will help me carry mine.... That's all we have now isn't it? We (those of us who are surviving and have survived this Dementia Experience) have been forging these trails since our spouses' diagnoses....before that really. I guess there must be millions of those trails out there because each one is as unique as each one of us. Every now and then our paths will cross when we come to this site and post our thoughts and are able to give each other some understanding and compassion....
Hang in there, Wolf. It's not going to be a linear process, and you'll most likely be all over the place, but you Will get through this. Yes, it was abuse. Alzheimers is abusive, and while everybody knows they should leave an abusive relationship, with Alzheimers we can't leave, because we have to stay and take care of the person all through the progress of the disease. They end up dead, and we end up a mess. But I do believe the love we had for our spouses, and them for us, will carry us through to a decent life again on the other side. I am starting to think that anybody who has been an Alzheimers caregiver could probably handle anything life could throw at them. There aren't too many worse things.