These ailments and compromises come with the territory of the golden years I notice. I'm the same type as oakridge was mentioning, I just want to sit and absorb things and catch up with myself.
When a friend came and visited me earlier this week, we drove to a nearby city and had lunch at a hamburger joint in a park we both knew of. I noticed he was walking a bit more stiffly at times and commented on it. He explained that it was his new shoes and he even showed me one. But it wasn't the shoes. It was him, where he also got into the car bum first and then spun around - something I've never seen him do before and another thing that was flying under his radar.
I see these things in myself. Something I call 'old man walking' where the stride is not full but chopped. Three months ago I noticed my left elbow hurt. That became sharper like a bone spur or anyone's guess so that I could hardly lift the stack of plates out of the dishwasher and up into the cupboard or swing around a pot full of boiling water to drain the pasta. Now it's almost gone but that's been months. I have some deadening of feeling in my feet where they're clearly somewhat swollen at times. I have a red mole on my right arm that has itched for several years now. My ears constantly ring with a high pitch so I have tinitus or whatever that's called. I can open a jar and get shooting pains through my wrist or I can walk right into the side of a doorway suddenly. My teeth are racing to break up and fall out where I've cut out things I've loved eating all my life as too sweet. Those are just some highlights.
My sister and I talk about absolutely everything, she's one year older and is going through exactly the same things. Almost nobody else talks about the trials and tribulations of the golden years around me even though the joke is that older people talk about nothing but. I get that. After baby boomer life there seems to be some kind of resistance to the idea that we're actually getting old.
(disclaimer - if you're older than me at 67 and want to make comments about how young I am, you can shove that in your ear. everybody younger than me's experience isn't invalidated just because I'm older)
I don't subscribe to the medical theory that finding out what's wrong with us as senior citizens as soon as possible is the best thing to do. I don't even have a doctor and haven't seen a doctor in 14 years now. I haven't had a serious cold in that time although I've had depression, anxiety, a touch of insanity, and more emotional pain than I thought could exist in one person. We all know why.
I've changed a lot. I would have pointed out that it couldn't just be the shoes to my friend thinking I was helping. Now I feel I understand that we need our coping mechanisms where I've learned with certainty that I need mine.
This is the friend who's wife got inoperable lung cancer last year with a tumor larger than a golf ball, but it died with a single round of chemo and radiation and within one year she was cancer free. Or my x-best friend who told me I was too sedentary and is now recovering from a triple bypass. He once raved to his wife about having my baby back ribs which I made "from scratch". She was impressed. I didn't know what that meant - except they don't even make their own hamburgers, buy salads out of the bag, and think cooking means heating things up. Or my female friend who lives in her daughter's basement and has to work because there isn't enough money - except she's needed and involved now that the daughter has a baby and they both work, and her son Dan is taking her to Amsterdam and Paris next month along with his married partner Dan. You never know what fork is coming up in the road - or any other utensils for that matter.
I've lost interest in assessing and judging what other people do. That's quite a turnaround from being infuriated and hurt by what other people do. I would call that acceptance but I think it's more a sign of actual healing. Maybe it's both. Maybe some actual healing makes acceptance more possible. They're just words shoehorned into situations anyway.
Personally, I believe the single best thing I'm getting back (through much struggle) is the ability to genuinely appreciate. That wasn't genuinely possible when I was skewered and turning on the spit, and it isn't some religious experience or dancing in the street, instead it's the experience of seeing more things as fine more often.
I know that my operating range is limited and fragile. That will be evidenced when something I think is serious happens. I can still easily react with strong anxiety over things that shouldn't really draw such a reaction. I can also sometimes feel the loneliness right in the marrow of my bones. It's what it is which is that it's all changing in unknown ways. I used to feel oppressed as though I was struggling just to be. Now it feels more like unaddressed issues with uncertain outcomes anyway.
How long can I operate the house by myself? I have no idea and I know that limit is coming as these days race by. I know that but don't worry about it because it will be what it will be and I am clueless to predict what that is. I hate getting older which I'm pretty sure is sane, but I'm not absorbed by it. I've wasted a lot of time in my life worrying about things that never came about and the school of hard knocks seems to have helped me to both see and believe that.
"Do not go gentle into that good night." I thought that was Byron but it turns out to be Dylan Thomas. Rage, rage against the dying of the light. I get that. But I don't shop there. It can find me just fine with my feet up relaxing, gnawing on back ribs I still have teeth to gnaw with. Later, I'll have my new invention - pineapple ice cream. That's fresh pineapple bits from the pineapple I cut up covered in Hagen Daas vanilla ice cream. My one cat who wants to lick the bowl afterwards hates that - so I put a dab of ice cream into a small glass bowl and when it's melted, I put it down for her while I continue inhaling. When the train comes in, everybody rides. My world. My rules. Don't worry, be happy. Yessir, I believe that. and I'm on it until the wheels come off. That's the way of it and it always has been. It's not the dying that holds the meaning IMO, it's the living. I want my share.
Yeah, me too. I want my share. Today I went to the Kayak Festival, and tomorrow I'm going to the Strawberry Festival. And on the way home today, I stopped and bought myself one of those ice cream sandwiches made of vanilla ice cream between two big chocolate chip cookies. 510 calories--and worth every calorie! Last Sunday I sang in our massed choirs concert at church--sang for one and a half hours without a cough. Hey, no prob. So for years I didn't even have a doctor--now I have four. Good Lord. I don't really know what that signifies--I'm not as philosophical as Wolf--but I'm not letting them get in the way of me having fun. (And I really do feel fine--I'm not a martyr--if I was having any symptoms of anything, I'd let the group know about it.
Elizabeth, thank you for the update. I hope they can soon get to the bottom of whatever this is. (Is it being snarky to say that maybe the doctor would think it was more dire if he were the one dealing with it?)
Well, so much for the Strawberry Festival--I couldn't even get Bandit through the parking lot to the riverfront where it was being held--he was just too afraid. Ever since I took him to the Revolutionary War re-enactment in our town last October--and the militia fired off their muskets--he has been afraid of going anyplace where scary guns might possibly be fired. Sigh. I just took him home. When I do the Corn Festival and the Pumpkin Festival later in the year, he will Not be coming with me. I will be taking him for very short outings near home to see if I can build up his confidence again--but if he prefers to be a little stay-at-home dog, that is fine, too. He gets tons of outside activity walking around our complex--we walk along the edge of the woods, and he sees lots of other people and dogs--sniffs everything, chews grass, etc.--but not in a noisy, crowded setting. He leads a very outdoorsy, doggie life--looks like a black powder puff, but trust me, is all dog--so if he prefers to be a bit more conservative in his activities, and avoid those terrifying (potential) colonial muskets--that is fine with me.
I wish we could post photos here. My Heartland neighbor texted me a photo from my the back yard of my Heartland house this morning. There is a little fawn lying right in the middle of my back yard in the grass. The doe delivered him in my neighbor's vegetable garden a couple days ago, and has been leaving him either there or very close-by. I notified my lawn care guys to be careful in case they do the lawn--to watch out for the fawn, just in case. I'm assuming the doe must be very close by--she could have gone into the park across the road, of course, or may be hiding behind the big over-arching cedars that shield my shed. Fingers crossed. It is an adorable little fawn, and looks healthy.
Saw my Primary this morning. He admitted they had been worried about lung cancer...well, duh, as if I didn't realize that, too. Anyway, he agrees with the pulmonologist that it just looks like an infectious process that is taking its sweet time about going away. If it were cancer or black lung disease or some dire thing, I would not be getting better, I'd be getting worse. So hey.
I've had the most incredible three days full of stories of great sadness and of joy so strong I could almost feel it. Moments so stark it felt like I'd stepped out of myself and actually saw me and knew instantly that I was looking at a person with depression. Dreams so real, I woke up and wondered about what I'd just seen. Unheralded, it's apparently suddenly time for revelations.
My poor friend's wife was just told she was cancer free but a scheduled scan revealed a small brain tumor even though the lung tumor is gone. I told my old neighbours to go fly a kite. I told my other neighbour that he was a stubborn Irishman and it was time to get out of his depression in his basement and stop looking like Jesus Christ. I bought an air conditioner after avoiding it last (hot) summer. That got me to the bank where I ran into a couple that moved away five years ago where we got along great. Then I got news that the ship I've waited six years for has come in, in a big way. I sat in the living room for the first time since she went into the NH six years ago and watched the sunrise through the picture window. The cats wondered what was going on. This window faces east and in the twelve years I've lived here, I've never sat here just normally and I watched a very, very red sunrise until the top tip of the yellow sun grew out of one of the roofs across the court. I looked at her urn and the things I put around it. I looked at the dead plants drooped over the pots dry as corn husks. I looked at the clowns and santas and elephants I put together on the corner table with the christmas bulbs scattered around them. I need to spend more time in here and all kinds of places I don't.
It made me think of the time my mother told me she understood I was going through puberty. I asked her how she knew and she told me she does the laundry. I'm sure my mom had other ideas about what my silent, strange face meant, but that was the moment I realized there was such a thing as laundry. I had up till then thought I lived in a personal bubble and that clean clothes in the drawer were just there. That reminds me of that scene in Raiders Of The Lost Ark where he's a famous professor and we watch one of the saftig young things blinking at him where she's written on her eyelids "I love you". My blinking eyelids would read "clueless" in stereo because that's my natural state with what happens next.
I did invent a new game with the Blue Jays though. They're on the overhanging eves looking down at me and I throw the peanut up but beyond the eves and they swoop after it and pick it out of mid air. The squirrels below hate this new game. Jays have their own pecking order and manners. Including one Jay that is a hell raiser and does nothing but chase the others and be a complete nuisance. I look further out now and have thoughts about the rivers and brooks and lakes and trails and places to go that I know.
It's summer now and I can feel that creeping slowly back into my reality. I've been away but maybe it's like riding a bike. I'm not so sure it's just depression and probably safe behavioral mechanisms. I think it may be true that I need this time for another reason along with the others - that I have to come through my own ideas of what is proper and what is not.
I do have some form of depression but I can understand why and it has to be taken in context with the fact I no longer feel a compulsion to scream out my window into the night. I did that once but I was quite strange then. This is close to normal strange in the same way a guitar might be close to tuned instead of randomly whatever and you don't need a degree in music or psychology when it's so obvious.
The thing about deep pain is that it's there and part of the landscape. You learn to live with it and whether it's banshee wailing fresh or bone gnawingly old, it just is what it is in the same way the moon just is and it's no good screaming at it or getting your shorts in a knot about it.
The greatest hurt in my life taking up 98% of all hurt space available, making all other hurts so tiny you need an electron microscope to make out what they are. My other half was ripped out and nothing, including me, is the same. Obvious; and the story nobody wants to know, but which is my life. To know that I do not look into the future but look at my long road on which I've been for fourteen years now without a vacation or a coffee break. I have visions of finding Job of bible fame and throwing a pie in his face. Patience of Job my behind.
I know why the deepest memories come slowly. Because for some time they hurt more than they are beautiful. They come out when they are beautiful but still hurt. The balance change is the access like pulling the curtain and becoming Oz running the levers. It's innocence lost in some ways where the very hard things and the very painful things we live through change us as all the things we live through do. In some ways the piano gains more keys and in some ways it changes the player just as it always has such as the day you walked away from your toys because playing with them had changed.
In these last days I remembered we used to put a concert tape into the machine some weekends and while we were doing whatever we were doing, the television was blaring out a U2 concert or any of the dozens we had. One of our favourites was the Pink Floyd concert in Berlin. A lot of big names played in that and even though we weren't Pink Floyd fans so much, we loved that concert. I could feel the pain and the joy together with the memories of us when I listened to it today.
https://www.youtube.com/watch?v=weg5OkMJ_J8
Joni Mitchell, Goodbye Blue Sky -from the Pink Floyd Berlin concert
Saw the thoracic surgeon today--she is the chief of thoracic surgery at Westchester Medical Center, and teaches surgery at New York Medical College. Wow. But very down to earth and nice--spent a lot of time with me hashing over my case. Says since the CT scan is improving and I feel fine and have no symptoms of illness whatsoever, that she is not going to do a lung biopsy. She wants me to get another CT scan of the chest on July 31...this one without IV contrast--yay!--no needles. The hope and expectation is that the "patchy airspace disease" as they are calling it (i.e. they have no idea what it is) will continue to clear on its own.
She says it could have been a virus. She has seen only one patient who presented with my same symptoms and had a similar CT scan. This person got very ill and septic and had to be hospitalized. As it was here in my town, there is a possibility that it was just some rare, funky, local virus that I happened to be unlucky enough to pick up--as did the other person. The test results were slightly abnormal for myco....something....a fungus. If it was that, then the anti-fungal medication probably got rid of it.
Riveting stuff, I know. Are you all asleep yet? Ha-ha.
Sounds hopeful Elizabeth. Thanks for the update. Continuing to be concerned but hopeful.
Wolf, I like that you can feel.the pain and joy together. It is so difficult. Right now I am feeling the pain. And it is experienced as physical pain. I was scanning some photos trying to put together a package for hb's sons. Still haven't told them. There are houses I remember living in. There is a picture of me in a swimming pool. I know it is me. But I don't remember what those days.were.like. I don't remember why on earth I decided to get married. I have a.collage of photos of our wedding and honeymoon. I believe I enjoyed that week. I see it is me in the pictures. I can't remember the feeling. I walked around my property the other day. I know I used to like it here. I used to say every evening that it is so much like a favorite camping place all the way back in Virginia. We had to skrimp.and save all.year to be able to go camping every summer. Now I live in a place like that all the time. And I sleep in a real.bed. But now it feels like a prison. I picked up a tool that has been laying in my way.for 20 years! The one time I moved it hb had a temper tantrum. Yesterday I hurled it into the ravine. I am getting more willing to get rid of every annoying thing. Exept for the most annoying thing that is. Legally can't do that. Have to either take care of him here or pay someone else to do it.
I like the new bluejay game. Especially how it taunts the squirrels. When I look out my secnd floor bedroom I often remember you talking about rolling the peanuts for the bluejays. I'd have to remove the screen. For years we had only one blue jay here. This year we have three I think. Actually they are scrub jays here. Look different but sound and behave the same. My Grandpa used to stand at the back door with some peanuts and the squirrels would come sit on his shoulder and eat them there. My Aunt Mary, when she lived in Fl, had an egret that would come into the kitchen for some bread and cheese. That bird was about 5 feet tall. Would only come for Mary. Didn't want anything to do with Uncle Charlie or anyone else.
I am going to see if I can listen to that song now.
Wow, lucky day. The link worked on first try ... on my tablet! She's so young. Interesting to do that song with that video playing in Berlin. Talk.about pain and joy together. That must be early 1970s right? The wounds would still be too fresh in Berlin. How did the audience receive.that? Were you there? That orchestra is awesome. Must have been a terrific concert.
bhv, I can easily relate to the way you feel because I had no balanced outlook or ideas of any kind. All good things were 'over there' and unreachable including the inability to remember the same memories the way I usually did. Add in that I was trapped in the thing that kept getting worse unlike everybody and everything good that I had known which left immediately because they could.
I lost touch with us, with me, with life, and with the memories and the nuances that made my life and our life what it was before this disease.
One of the harsher things that happened is that when lifelong friends and relatives from different parts of my life all turned on us, I thought it was our fault. I'd been beaten down for so long by the long, slow death that I couldn't think normally anymore and went through months and months of wanting to explain or understand, as though their public defecating was my shame.
Three of them have died since and in each case the remaining dears have been kind enough to inform me - because of course that is about their pain so it's important enough to communicate with me. Then there were the snakes who came back when Alzheimer's was safely gone and assumed everything was fine now. And of course, the Christmas cards that keep on coming in the way a robot gets through a job distributing cardboard. I await further news.
As you can hear, I'm over it all. I still put their group pictures up around Dianne's urn because with any luck she wasn't aware of any of that or her own hardships that she caused me both early and late in this disease. She had the disease so I forgive her completely, as I do completely myself for the times I wanted to kick her into next week. I can tell you one of the joys now is to swing around the ideas without the fragility of the wounded animal I was.
An example of that is when my 87 year old neighbour phoned at 6:30 in the morning telling me she needed me to come over and help, and scolded me that I should be up by now when it was obvious she had woken me up. I had offered to help in the way any decent neighbour might but she didn't even remember my name until she realized she needed me. Would I take Jack out to lunch she kept asking me when I'd explained numerous times that I don't eat lunch. For years I was in here alone taking care of Dianne and she knew that but never once offered to help. Yet no help from me was unaccompanied by a comment like the fact that I hadn't shaved. When I began pointing out that when you wake your neighbour up asking for help you should have an apologetic tone, she told me she didn't want to hear this. So I said "fine goodbye" and hung up.
The couple I met at the bank I mentioned above were their next door neighbour on the other side from me. When I told them a couple of days ago what had happened, they both admitted that they were terrible neighbours always demanding and criticising.
What were the odds that just a couple of days after I finally complained instead of just trying to fit in anywhere, that I would meet their other next door neighbours and find out they had exactly the same experience with them? I hadn't seen them in five years.
I've gone from feeling miserable and not facing anything to feeling not too bad and not facing anything voluntarily. This year I did phone about getting an air conditioner and that's why I went to the bank and met that couple and that very evening handed over the money and signed the agreement. The next morning I came in here and turned on the computer and read that the company I invested in heavily six years ago had hit the bullseye and the markets strongly agreed materially changing my economic state and outlook.
btw - my next door neighbour got his hair cut, has come out of the basement, cut his grass, and been outside every day including now in the rain. I know because I just came back from there in the middle of typing this to confirm we're not going on this trip today because of the rain and maybe tomorrow. He hasn't mentioned my comments and I'm not going to either. I know how these things work and have the equipment back to operate within normal operating parameters.
No one has ever asked what this precious package is I keep referring to as something I've been trying to protect for years now. It's the knowledge that, like you, I'm going to make it because I'm not easy to take down. I blubber a lot and scream a lot and make a lot of noise, but I don't stay down and I'm just going to keep coming. That's not the same as fun or joy or laughter or relaxation or playfulness. You can't protect that stuff with an Uzzi. You can only protect that stuff with vulnerability and trust. Not easy when you're up to your butt in alligators to remember that the objective was to drain the swamp.
I can always get a laugh from my sister when she's explaining some thing she's facing and I impersonate our mother saying "Sing! Sing!" Mom is right out of Sound Of Music and the world portrayed by MGM musicals. She loved Lawrence Welk and Mitch Miller and so on and she loved to sing. Which is fine. I never minded. But let me explain something. I don't sing. Leave me alone, you're stunting my growth. My sister was there and she remembers.
The point there is that our happy places may vary but they matter whether that means we're singing or playing music in our head (me) or any flavor of anything whatsoever - and they are almost always in the places where you trust and make yourself vulnerable. Having fun, feeling joy, laughing, and playing are those types of things for me and for a lot of people.
My eye has always been fixed here from shortly after 7:32 pm on the evening of July 31, 2008 when I was told our future in a phone call from our GP that all the tests confirm Alzheimer's. Seeing it through was never in any real doubt where the survival rate of caregivers while caregiving is extremely high, it was always after which is why in my second post in 2010, I asked if anyone truly recovered from this and came out intact.
So. If you know from the start you want to come out the other side whole and you work the whole time to remember and honor that, can it be done? I'll let you know. By 'work' I mean things like spend years arguing against the entrenchment of validity that those that hurt me are evil and bad instead of disappointing and sad. Allright. Back into the kiddie pool, you little scamps.
Thanks to Alzheimer's my wife and I got to experience being a victim and being powerless and being trapped and being broken and even killed. Thanks for the memories. It was never in doubt that I would eventually walk out of that valley of death - but as what?
And given that we must be a wreck and a mess and a ball of tormented grief and/or backed up nightmares when we come home from the funeral - how and when do we judge what we truly are now afterwards? Spin it, Bob.
That Pink Floyd concert was held in July 1990, months after the Berlin Wall came down. I wasn't there but we were told by real Pink Floyd fans that it was a very good concert so we bought the tape and fell in love with it. I had blocked it from my mind. Tears fell when I listened to Comfortably Numb which was the song she liked the best. Not today. I've listened to it already this morning and I'm not nostalgic about it. I'm Comfortably Numb.
Wolf, you wrote, " By 'work' I mean things like spend years arguing against the entrenchment of validity that those that hurt me are evil and bad instead of disappointing and sad." Did you reach a conclusion? Bad or sad? Or is it sad that it's bad?
Hi Mary. I can go both ways on that. It's sad that it's bad (and their self authorization obliterates that question within them), and it's bad that it's sad (that their garbage affects me). The operating function is that it really did hurt badly beyond any words.
Notice that none of this has much to do with them. We've already decided the circumstances and given weights to them and manage some sort of neutrality point about it all. But underneath, in the deeper recesses, is hurt and hurt is as much a word as it is a deeply real effect.
One line of reason holds benefit to me. There is no requirement for me to judge or decide anything about it. I can separate out the welfare of the abused and take that as a subject on it's own.
I will however say that I've had a number of occasions where someone drunk said something to me that was (I'll call it) revealing. They were drunk but did what they said reveal something about them? Yes it did. Just as the person who tells you dirt about others guarantees that they tell dirt about you. That you know, as the thing is happening, that the person who panics is about to panic. What does it all mean? It means these are some of the things people are.
DJ had a dream last night. In it, my family was all together, but in three separate side by side houses. My mind kept telling me that I had had the same dream the night before. But it was probably déjà vu. My parents were there, my favourite aunt and uncle were there. My sister and her husband were there. I remember discussing fishing licences with my parents, and cooking bacon and eggs with my brother, with his former wife looking on. The only ones not present were my hubby who we had left alone with the dog we had when we were first married. The group of us would go on outings and leave hubby and the dog behind. I woke up thinking that when hubby passes, everyone would forget that hubby even existed, including me. My aunt and uncle, my parents, and the dog are long gone, and my brother has remarried. I do not have a close relationship with my siblings - their choice not mine. But how could I forget? Or was the dream telling me that hubby is in his own world, remembering things from the past for as long as he is able?
I've set some goals for myself. All by itself that's something. It isn't that I'm not aware I need goals. I've known that for over a year. I need things I care about and want to achieve which everyone does who wants a better life for themselves. That's what goals are - wanting to make your life better. What that is only has meaning for the goal setter.
I still need to take a moment and point out to myself how far I've come because it's easy to lose the context when you've transitioned from feeling like you're surviving and then struggling against oppressive feelings when those feelings have been largely assimilated. That runs parallel with how unwanted and initially hated my situation is. I had to separate those because they aren't the same thing. Getting over what happened doesn't solve how I feel about starting over alone late in life. For one thing, getting over is going away from but starting over is what I'm entering into.
Here it might make things clearer to point out that up until recently my 3 1/2 years have been dominated by what happened and getting over; whereas the feeling inside that I want more in my life for it's own sake and that's up to me has come to dominate my thinking by far mostly this year and somewhat into last year. I might say that most of the time I was struggling and unhappy whereas now I'm much more natural and unhappy.
I live on a planet where thinking extends to rich people being happy, or famous people being smart, or good looking people being confident. I'm not the only one who's stupid about things. It's easy not to get down on myself for taking so long to figure things out. I expect to take just about as long as anybody else - a lifetime. In my world, skimming is it's own reward and genuine substance takes real effort to achieve - or luck, never discount luck.
It's all in how we see things. I keep saying that, but I can tell you that somebody in Charlotte's motor home is very lucky. Very lucky indeed. What is Charlotte's hard road is her husband's great fortune. It's not our great fortune. That's why it's called 'giver'. We give at prices we all know and all that giving isn't dumped over a cliff - it's received by them and usually in a clueless fashion though just as hard when they're thanking you (right Lindylou?).
I was substantiating that life is how we see it. I wasn't changing the subject. That subject is the recovering from caregiving and one of the milestones along that road IMO is when you start setting goals for yourself you believe you might be able to care about and want to achieve.
We want answers and complete solutions but this experience doesn't seem much different from what a would be athlete or musician or electrician faces. Learning something we don't know how to do well yet. Like enjoying ourselves as a single person or feeling good about what we have or feeling energy or passion in our lives.
I bring to these goals an almost complete lack of enthusiasm, a deeply seated reluctance, a tired body and spirit, and an absolute vacuum of ideas. Wish me luck.
This is very interesting, Wolf. I am not out of it yet but I am struggling to set goals for myself anyway. I find myself in the middle of the day, when ranting and railing against the inhumanity of this situation, thinking... if I was by myself what would I do today?
Not only am I caring for hb but also have been supporting my sister, and, to some extent, her two adult children. It is complicated. It feels like dumping hard earned assets over a cliff. Yesterday my niece died. I don't have children. I don't have a twin. I have not yet lost a sibling. Have no way to imagine how they feel. Would like to not be involved. But my father kept making me responsible for her starting half a century ago. That kind of thing is difficult to stop. Last night my brother says I shouldnt pay for her funeral. I've been "enabling" her all this time. I should teach her to fish instead of giving her the fish. REALLY? Like I haven't been trying to teach her to fish for half a.century?
Back to the subject at hand. I realized I need to set goals for myself to find ways to use my assets to make myself happy, even while taking care of hb. I spent my life scrimping and saving to be able to take care of us in our old age. It is difficult to turn a lifetime of habits around. I need to gibe my sails. Just peacefully coming about is not hacking it. I have set a goal to get the property ready to sell in case I decide to go elsewhere. There is a lot of deferred maintenance to catch up on. Have made huge progress. Still lots to do. That consumes quite a bit of time but doesn't really lead to happiness or enjoyment.
That's where that vacuum of ideas comes in. I am actively searching. You are too. I wish us all luck. As you said above - never discount luck.
On Facebook a few minutes ago Kiplinger had a warm and fuzzy article about how people are now "living with dementia" as opposed to suffering.... And some health professionals are.saying we should use the term CARE PARTNER instead of Care Giver to more accurately describe the relationship. ARE YOU KIDDING ME?????
There is no partner here! Good grief just what I needed today.
Bhv if you decide to help with the funeral, do the bare bones minimum. If they want more tell them they will have to pay for it. To me bare bones is either cremation or cheap pine box with no embalming.
That's what everyone is saying. But that's not what generally happens. They.are.likely to.decide.what they want and then tell me how much with much sobbing and hand wringing. I just don't know what I am going to do but can't rush it. Gotta be fair and let it play out no matter how much I think I know.what they are going to do. They don't like it when I make assumptions about them no matter how many times over a 60 year history it just keeps repeating. I can't tell you how many times I have decided to completely withdraw from this extremely toxic "relationship" and keep being sucked back in. They will cremate so there is no need for cemetary plots at least. I am hoping they do a memorial at their church with pictures and no casket. But haven't heard from them. Can't decide if they are thinking I should call them. Kinda hoping I don't hear from them.
Bonnie, I suggest that you withdraw from all plans of involvement with funeral of niece or any other of your family’s problems. You need to calmly say, and repeat if necessary, “I’m sorry. I’m just not up to it.”
Bonnie, withdraw if you can from any relative that gives you stress. I told my sister and brother that my DH was in his last stages. That was a month ago. Their responses were underwhelming in terms of empathy, so I decided that when he did pass I wouldn't even bother to tell them. If they find out, fine. I'm not going to worry about it.
Charlotte, they don't care enough to " hit me with both barrels" and if they did I am strong enough to tell them what I think. My daughter and nephew are friends on fb. She posted a lovely tribute to her father. If my nephew didn't tell his mother, or if he did and she didn't respond, then it's not likely to happen now, a week out from his passing. As for me, I feel a sense of closure on a very long journey, and now I can concentrate on my own health
I spoke with my sister and niece last night and it was a good conversation. They are keeping things simple and my niece has a lot of friends who are helping. I feel much better about the whole thing. Now a little guilty for assuming the worst but not too guilty.
Bonnie, in answer to your question of a day ago, at the moment I’m in between a rock and a hard place. The second surgery has failed (it has been coming on for the last two months). I’m not sure there is a solution — it may be that I will have to live with it. I’ve been referred back to the original surgeon and have an appointment to see him in mid-August. That's good news about your sister and niece. I'm glad for you. There's already enough on your plate.
I've been busy in the same way a Wildebeest trying to shake off a chasing lion is busy. Busy surviving, busy recovering my breath, busy watching my teeth fall out, busy wringing my hands. I did notice everybody left and I was playing all the parts, but I never really understood what all that meant when I was ready to buy the replacement parts and plug and play. Uh uh.
The extent of change is even visible in advertising. Whether on the computer or on TV, I'm well beyond all normal target markets now with a few exceptions like dentures, depends, and the cool life on offer at old age homes. That's partly because advertising people understand better than anyone that the vast majority of senior citizens do not borrow or spend so much as save - with the exception of the anomaly of old men and new cars.
I was still relevant when Alzheimer's hit the beaches of our shores. Great wife, great job, great house, great friends, both parents, and a great life I had by the tail. I volunteered to hang up the spurs and become a great painter and writer. The rest is herstory. I can draw a straight line from that time to this without hitting a single Alzheimer's thing - except no wife, no job, no friends, no parents, and no life.
Well everybody faces most of that anyway say some and that's true but most people aren't being waterboarded for a decade or so while facing that. That's like taking your final exams on a roller coaster while things are thrown at you. Good luck with that. And good luck with this too.
Don't get me wrong. I've achieved marvelous things. I don't intensely hate my life anymore. I'm not a tense ball of anxiety with massive depression anymore. I have some residual tendency to become anxious and some residual depression where I still have no new positives - except that the hordes of negatives that consumed me three years ago are largely gone and that can be seen as a positive if you squint a little.
Part of the problem is that you only get one shot at this. Nobody anywhere would set up a system where the participants aren't allowed to study or practice before the final exams. Except here. Life here doesn't care how good you are at it. You go through it and you're done. Shut up.
What a shock it is that every religious theme throughout history describes life here as preparatory for something else. Having this brain to pick berries is nuts and most get that intuitively. Having a large claw coming out of your chest or lazer beams shooting out of your eyes would have been more apparently useful when taking on woolly mammoths.
In all that philosophy, I don't actually have to study it to understand it's fundamentals. I just have to see that the punishments are spelled out in great detail while the rewards are nebulous things over there somewhere. To understand authorship of concept, I only have to know that most humans worry about getting one of the hundreds of forms of cancer, but almost no human spends time in their day celebrating they don't have one of those. It's human nature to discount what we have and wring our hands over what we don't.
Human nature also has a lot of great qualities too. I'm one of the beneficiaries of it's resilience. It's not as though not wanting to get stuck in bad things or have great sorrow become the drumbeat of all future things does anything. Understanding is not solving. Understanding anything is just your personal concept of that thing. Discuss anything in enough detail with anyone and you learn that your exact understanding differs. Follow enough discussions down into detail and what you learn is that everyone is pretty much unique. We can thank our completely over-engineered brains for that. On the other hand that's why there seems to be so much nuance in everything. There isn't. It's you. The physics of the actual event are the same for everyone. Detailed experience is unique.
Take boredom. Not on the radar of most caregivers. Definitely on the radar of most caregivers in it's time. Boredom can be countered by activity. It is only solved, however, by interest. Entertain me will keep you busy. Wanting to do it instead of talking about it enough makes the topic itself disappear. It's you that's boring, not life. Skimmers will miss this insult along with whole paragraphs but they get through it far more quickly. The question you want to answer is how do you stop shopping outside yourself and start buying and moving in.
That's exactly the question I'm trying to answer. Not where do I go and what do I do. Those answers are easy to achieve now. I can list them and not solve a thing inside. That's a fact for me but it may not be a fact for someone else. Certain activities might be the solution for some. Certainly all solutions involve activities of some kind. I would like to find genuine interest.
It helps for me to step way back and put some basic definition around myself so I can 'understand' where I am. I've survived horrible things and I've managed to come away from a cesspool of mental and emotional genuine traumas. I'm managing to turn a completely hated and unwanted reality into something I can live in. I'm so unhappy even my tears are bitter. And I've been on this hard road longer than most people can stand to hear about even briefly. Now I'm trying to care about better things such as deeper feelings and more genuine interest. That's pretty accurate. I've spent more effort trying to be fair and understanding with myself while trying to also push against my own obstacles than I've read about including such comedies as Withering Heights, Bleak House, and Brothers Karamazov. This isn't a competition. It's my perspective.
The answer to why we fail is always the same. We're not trying hard enough. While you're disagreeing with me right now, you're about to prove me right when you face the next test where you will be trying harder. Keeping going in the face of greater exhaustion and tougher circumstances takes trying harder unless you've invented new physical laws. Whatever else you do, make sure you're hard on yourself, you don't give yourself credit, and you never allow yourself real empathy with your situation.
That's because, with an astonishingly high probability, you will come to a place where those are exactly the things that will be tremendously useful. It's too bad that it's human nature to see these things we call virtues applied to ourselves as 'selfish'. Helping others is a virtue. Helping yourself is selfish. It's not. But that's how screwed up human nature is. It's not you. The cards actually are stacked.
My favourite icon is me on my knees face in the basement floor, drooling and wailing that I want to die. That's not a movie I watched; I lived that moment. It's on my trophy wall. On my fridge is an assortment of pictures of Dianne (my wife) laughing. I have range now. One day I hope to have more feelings about all these things - or anything. It's something I'll be helping myself try to have. After all, I'm not crazy. Or maybe I am. Uh uh girlfriend. Look at the icon. That's crazy. This is just life.
Wolf ........ You certainly have a way of telling it like it is. I can't imagine how all of that enters your head. I read your stories and those thoughts are stuck in my head and I can't rid of them. Especially when you mention your Dear Dianne.
Just jumping back in for a minute to answer the question of why don't I just tell my daughter I can't babysit after all, the last week of this month. I feel I was stupid and let myself be manipulated into something that is inconvenient and a royal pain in the neck to say the least--but now that I said "yes" I don't feel like it's the right thing to do to back out. She is going to a mandatory, week-long, out-of-state training that they have told her for years she was required to attend. She is one of the few in her agency who have not attended this training, as she never wanted to leave her three little kids for that long. Now the government is pretty much giving an ultimatum to those who have not attended yet--threatening career implications. So I do not want to leave her in the lurch. It's more than annoying that she is planning to attend with the new boyfriend, a co-worker, who also needs the training. They are planning to do the minimum in terms of "filling the square", but are planning to do fun things as tourists in the evenings. Sigh. Hey, whatever. After this, I will "just not be up to it." Ha-ha, love that phrase, Mary75.
I started this topic for the central reason that I refused to accept that the caregivers supported during were discarded after the funeral. Widows thread or support the current caregivers or go away. Yes.
I started this topic with the idea that the caregiver spouse up to the point of the funeral has only gone down into a harder situation and a more demanding situation all that way and that the actual experience of caregiving should take into account that truth - that the spouse's experience because of caregiving is only partially complete by that date.
I started this topic because I saw that there is no help for caregivers anywhere that actually focuses on the recovery from caregiving. Most don't believe that's a valid topic in caregiving but I don't agree that the spouses themselves are not a valid topic.
I started this topic to fight one of the blind spots life is littered with where even the dementia spouses who give this care, don't care about this part of it - and this is a part of it for absolutely everyone here.
They died so I'm fine now must be the theory and that theory is supported by nothing whatsoever anywhere and is instead littered with evidence of the opposite.
I refused to accept that and I admit that initially that was because of my own needs. I decided to at least talk about my own journey ALL THE WAY through the ALZHEIMERSPOUSE experience. Only Joan would have stopped me or shut me down but she never did.
Why do boards like this exist? To support and share with people in like situations. What do doctors often recommend? To join a support group so you can share with others who are in a similar situation. What is one of the most important things in all of this? That you are not alone and that you belong somewhere and can 'talk' to others about it - whether your spouse has passed on or not because it's sheer fantasy that you will not need that then.
Instead what is true is that it's very likely and almost certain that after the funeral is the Alzheimerspouse's most desperate time and that that is too often true for years.
I believed that by demonstrating that first on the Widow thread and then here, I would be addressing a need I am still sure is there, but I was wrong in what I thought and in complete honesty I can't tell why.
I have made it. I'm certain that even talking largely to no interactive responses but where I knew everyone had to be in a similar boat, has helped me a great deal. It may be that such a forum as part of the dementia spouses' experiences is viewed as not authorized or not entitled. That part is true because I resisted push back when I started this. I doubt that explains the dearth of participants where this was never envisioned as just me, and without interaction, just me telling my story about the second half of dementia caregiving.
We're probably within ten years of the societal benefits being appreciated for the financial implications to society alone, but also the burden it saves from the overstrain the baby boomer bulge has just started to create. That will help provide the impetus that we have to help them get over those burdens as well. The recovered PTSD soldier tends to pay more taxes and tends to cost less overall to support.
I come away satisfied that I pushed this blind spot to reasonable limits. I'm satisfied that it's idiotic to view all value in helping them die and helping ourselves achieve their release, while never giving a rat's behind about what happens to ourselves. We are in the state we are because of this experience for God's sake. Imbecilic. Moronic. Worthy of a Stephen King type novel.
I'm not mad at anyone here. Quite the opposite. But I'm mad that such grotesque thinking is the orthodoxy of the day. I put it in the same category as not giving a flying about human beings in wheelchairs because they're in wheelchairs. Every single one of you has lived in both states. People in wheelchairs are gimps. People in wheelchairs are valuable human beings that are entitled to some breaks so they can get around. And pay more taxes not to mention costing less. Caregiving is a leprosy of our time. I have every chance of living long enough to see that change largely thanks to the baby boomer bulge. We'll see.
George has said at times that he can't imagine what goes on in a head so full of ideas. Well it never stops and it's easily as much a burden as anything else. I'm always out there by myself which I've said on this board for many years and this is only one topic among many others in my life. But I get to see for as long as I have and that is rewarding in ways that are indescribable.
Some examples:
I've known by obvious deduction that God's universe is full of planets full of life and that this one isn't meaningfully different from any of His other ones. I've known since I was a child that thinking otherwise was just one more example of human nature to make things literal and orthodox. That the world is flat is as obvious as it is wrong.
And I have the joy of getting to live in a time where the monkey makes better instrumentation and is astounded that there are planets around most stars and some of them are earthlike (solid and in the liquid water zone). We're in the thousands already in how many we've detected. With more time and better equipment it's going to seem like they're everywhere. What a shock.
It's going to take more than the evidence that God has made billions of galaxies and trillions of stars to pry from the monkey's fingers that he is the chosen one, unique and special in the universe. It's going to take even longer to understand that the universe works and can only work within the laws of physics - the true and undeniable evidence of how God does it. And what that physics means is that nobody's going anywhere and no aliens are coming here. You can look and you can talk, but sending a can of beans to the nearest star is a massive undertaking that will take years just for light to come back and tell you whether the beans arrived. Sending a biological creature there that's alive when it arrives is such a mind numbingly hard and expensive thing to do that it's virtually impossible.
Going faster than the speed of light and maintaining molecular integrity are both impossible not because they haven't been done before but because the laws of physics by which the universe works refutes it. There aren't any aliens here and there never has been because the physics of space/time makes that nearly impossible. The most persuasive argument that intelligent life exists out there is that they've never tried to contact us out-of-control yahoos.
Writing, talking, and thinking about things for me is never a question of looking so much as sipping at a fire hose. I get to see things and understand them sometimes. Or maybe I'm just crazy. Either way it's it's own reward. In the same way that having fun using 'it's it's' in a sentence is. Dangling participle that. I'm sorry I wasn't able to find a functional way to tap into the need I talked about above.
The NYTimes had an obituary today for Anya Krugovoy Silver. "Anya Krugovoy Silver, the poet who, after receiving a diagnosis of advanced breast cancer in 2004, wrote lyrical verse that gave readers an exquisite, intimate and sometimes angry account of her illness, died on Monday in Macon, Ga. She was 49."
When I read these poignant lines, I couldn't help but think that they described us as well.
Marche, that poem is right on. Exactly what we do here.
Wolf, not sure why you say this topic didn't take off. There's 9 pages. I love this topic.
In your most recent post you spoke of sipping from a fire hose. Took me right back to Freshman year in college. At registration there was a huge room full of clueless people who couldn't seem to find five courses to take that first semester. I was absolutely furious! I said I am only going to be here four years. I can't see how I can fit ALL of the courses I find interesting in that short period of time! How could anyone not be able to find five???
I took a very interesting psych course. The prof was explaining this study involving fighting fish, which was interesting just to see the fish. But I kept puzzling with it because the theory just didn't seem plausible to me at all. I started asking questions and it kept being even less plausible. After about five or six such questions I turned to the class and asked if they all understood it - cause, if so, I'd meet with the prof after class. Room full of blank stares. That was when the prof said, " Of course this doesn't work. But that's the point. Because there were so many people who got riled up about this it led to all kinds of studies that revealed lots of ideas that do work!" That prof and I became pretty good friends after that class. He said no one had got that point before.
And, of course, now there are all those Ted courses etc available online for free. I haven't had time to explore YET.
Yes, but it's pretty much nine pages of me talking about me with a mention to Elizabeth. It's supposed to be interactive which I tried more on the widow thread than here where the experience here wasn't much different. Elizabeth has talked about her experiences and I've talked about mine and after that it drops way off. All you have to do is count the posts with the subject matter in them to see that. The point there is that's not what I think the need is. There's no way I'm unique and there's every reason to believe that what I see in myself and I read in others - needs interactive dialogue with others who are on this road or know this road to promote healing and to affirm belonging to life.
All of those understanding doctors and the ambulance and the ICU are there for him. Not you. When our spouse passes depending on our make up there is a wide range of reactions to the shock and grief and pent up everything - but there is one wave that hits everybody and that is that you are now alone. It's nice when children or anyone helps for a while but that aloneness is going to hit. Some people can go through all that much better than others. Some simply seal off various feelings where AD caregivers have way too much experience with that already.
This isn't even my business. I said several times that even though it didn't latch on, it's going to help somebody and except for certain blogs out there, I'm pretty sure it's one of the more detailed views into one experience with the other part of the dementia spouse's life.
Now I have three pages of this board open. This one, the one where I was writing about my dream on the cottage thread, and the one I just opened to see if your talking on your thread.
I like the "Journeys Somewhere Else" discussion. There are times when I really want to post something, but it doesn't seem appropriate in the ongoing threads about those who are still in the trenches. I am still profoundly affected by the Alzheimer caregiving experience, even though I've been getting healthier, happier, and more of my own person--(who knew?)--with every passing year. There are still things I want to say, even though for me, the bad old days described so well by bhv, Charlotte, oakridge, sedgley...and so many others...are thank God now in my rear view mirror. There's no question that being an Alzheimer caregiver is very bad for you, but that recovery is waiting for you . It may or may not take a while, but there is happiness, peace, light, life...still out there and it will be within your grasp. So when I read the hellacious posts and the misery that others are going through (Yes, I've been there--boy, have I ever been there.)--I feel that this Journeys discussion is a good place to talk about some of what the future may hold--and it can be a very good future. I know, because I'm living it.
Then I am glad I butted in on the widows thread awhile ago. Because I am so proud of you with the steps you have taken so far on this after journey! You can articulate some of those feelings like how we submerged ourselves so much because the world says we are caregivers - it is all about them. Like when someone told me it wasn't really abuse because it was the disease punching me. Didn't make me less abused. Actually more abused because no one was responsible.
And you can articulate the things that most would think were mundane. Like discovering that you were the proud owner of a chicken carcass... I still love that line. And the idea that we were unable to discover the potential in that carcass in the "during" time, but, in the "after" it can magically change everything.
I need to go back to that dream one too. I wanted to respond to that but got called away. There was something there I wanted to think more about.
Elizabeth, in a class at office on aging they said Don't lose hope. I fell on the floor laughing. You and others who have stuck with us give hope. For a long time I didn't dare dream. But recently I started exploring the "after" questions even if prematurely.
Ah. But it's not possible to respond to the dream post I have half written out but not posted yet. That would be time travel. I understand you mean an earlier dream post.
And, as you can see by Elizabeth's last post and earlier comments by me. She is still affected by the Alzheimer's experience even though she is also getting somewhere good. And, as I have said, I'm free at last but I'm not a happy camper. I'm fine with a chance of meatballs.
wolf, I can't imagine how fast your mind whirls, and what wonderful conversations you must have had with your wife. You have a way with words that can lift my spirits faster than anything....see the light at the end of the tunnel a little brighter.
Life is a quite the strange experience and it always has been. I don't think life needs human beings to be this strange, but it helps. A planet that throws up dinosaurs, neon colored fish, dodo birds that can't fly, flying squirrels, and talking parrots just to name a few is exactly the kind of planet that would give us brains that can figure out how to build and land space ships on other planets while foraging for nuts and berries. Ok Ok. While fitting item A onto assembly B and then getting a pension.
Once you get to know a species quite well you see that pretty much everyone has a personality. Multiple cat or dog owners know this well. Along with our natural personality, we also get a fairly random, roll of the dice set of traits some of which get called talents or aptitudes and some of which are the opposite of talents and those have no name yet. Some people can pick up a musical instrument and everybody can tell they're a natural. Other people take music lessons for years (me) and it never stops being steeply uphill.
Take my memory. I can 'see' in my mind's eye what I'm remembering and I can describe it because I'm 'looking' at it. My sister can too and sometimes she disagrees with what I'm seeing because she's seeing something else. Nowhere is the randomness of how what I have and don't have clearer than remembering numbers versus names. I can remember numbers after hearing them once and can usefully recall them months later. With names I'm struggling 100% of the time and always have. Now I have senior moments about names I know but even as a young adult I always had to work to remember names. No problem remembering words but if the word is a name all bets are off.
Then there's a whole nother set of traits that you could argue are personality but I would argue they're nature. One person can't stand conflict another is an adrenaline junkie another is nice to a fault another can't tell other's have feelings another is always worried another competes with everything, and so on and so on.
There are numerous others like quirks and foibles which are minor to major 'not working right' areas. They have quite a range mentioning ADD as one and low endorphine production as a second.
And finally in my criteria for this topic is experience. If we have zero experience we might not even be aware that a certain topic exists. I have zero direct experience with raising children but I have all the experience in alzheimerspouse I need or want.
I believe everyone can help themselves a little bit by looking at and understanding themselves better. It's a matter of choice to do that where choosing that none of this is interesting is one of those choices.
I can tell people they've shown they're strong till I'm blue in the face. It's only when we take delivery of information that we take on change. Compared to the changes we've already taken delivery of (eg: not partners, it's all you), looking at ourselves and getting to know more about what and who we are is a far easier and more positive experience.
It can help in numerous ways. If we feel overcome on a day, knowing we've had days like this before but we've always come through them and knowing that on a day like that we're not going to change it but we can help ourselves through it. Letting some things slide on that day or knowing what might help us a bit or even realizing more tangibly we just have to get through it like the other days we had like this could make a difference.
It can help if we have no idea what we're going to do to have that fact established and accepted. When the unknowns are reaching for our throats we can remind ourselves that we already know that we don't know what we're going to do; but, we don't have to figure that out today and we will figure it out in due course.
The fact is that spending some time understanding myself better has helped me many times and I believe is helping me move from my old world to my the new one I never wanted. Just knowing this is the last thing I wanted helps me to accept I don't love it - I just want to get better at it.
The central points are learning to increase our self empowerment and helping to increase our sense of ourself in our life at a time when that can be very useful both defensively and offensively. I had my sister and BIL over last week and we talked for seven hours. I told my BIL a version of this where nobody passed away in his world but he's freshly retired and has no idea how to do that. I offered to move in and beat him endlessly with a nerf bat while he's figuring it out, but he didn't want to have the alzheimerspouse experience.
Wolf, I think you just need to keep putting one foot in front of the other--one day at a time--but try to make them good days. I think that eventually you will find a new world that you love. It just takes a while, and sometimes you need to try new things that seem promising...and don't do things that don't seem like a good fit, even if conventional wisdom says you should. It's hard to figure out how to have a new life when your spouse (like mine) Was your life.
In other news, my Heartland house transaction closed successfully yesterday morning, and there is a Whole Lot Of Money in my checking account. Yay, yay, super-Yay!!! It won't do me much good in NY, of course, where the same house would cost twice as much...but hey, I'll take anything.
My Earthrise Over the Moon (photographed by the astronauts during the Apollo 8 mission) poster went in the auction, and I found that I really missed it. So I bought a fabulous 30" by 40" gallery-wrapped canvas print of the same photo from skyimagelab.com in California, and it arrived yesterday. I hung it last night, and wow, just wow. It is on one of the living room walls, as the other one was in the Heartland--is just so evocative of wonder and awe and new possibilities. Makes me smile every time I look at it. : D
This is good, Wolf. Had me laughing. I like, will figure it out in due course. And, I just want to get better at it. Cracked up remembering the nerf bat. Imagine that, he doesnt want the alzheimerspouse experience! ROFLOL.