The part of this journey where we try to heal our own alzheimers/dementia effects from all the years we went through is far too often done alone.
Most everybody goes through it alone because we give up the connections we made here, the trust we built here, the miles we put on together here at the very time they can help us. Us, the spouses that made their journey as safe as possible at great cost.
Right afterwards, there is mourning and for some time grief and I am certain for some time there is alzheimer's damage. We face massive changes in our lives. We don't know ourselves because we've repressed ourselves for so long and the world changed in the meantime.
This is a period in our lives we feel unconnected and isolated while we're under seige.
This thread where everyone is welcome and belongs is an ongoing and continuous thread with the topic - 'afterwards'. All kinds of things happen afterwards. Days come up where grabbing that rope still applies or looking to hear other ideas still applies or talking about something we can't decide or have questions about.
Afterwards for most is tough especially in how isolated we feel. You are't alone and you belong here among the people you went through this with to name one place where you truly are a full member exactly like the rest of us.
Who's beach house is it? It's Joan's and her rules apply. And why is it a beach house? Because there aren't any tests and you graduate yourself when you feel like it. The beach house is more food fight than black plague. It would have to be; but, that's not as easy as it might sound. May this enterprise be an instrument of healing.
unconnected...... This is how I feel, not all the time but often. I find jobs that should take hours now take days. Recaulking the tub, should of been done in a day. (Hours) Now on day 5 and still no new caulk on. And I don't care. Taking birdbaths and shampooing hair in the sink.
Was invited to a wedding, told the bride to be that I would come to the wedding and not the reception. She informed me there would be many single people at the reception. I am not single, I am widowed. Big difference. Why don't people understand or care. My own sister does not care to hear of my sorrow.
I want to sit with my dear friends from our group and listen to the waves wash up on the shore. I want to cry, still have not been able to. Why???
Be there soon! I am packing lots of extra sunscreen cause this September sun can still burn! I so hope we have a screened in porch area where we can sit in the early am and in the evenings to just relax and listen to the sound of the waves. Gotta keep the bugs at bay. Anybody remember what relaxing is all about? I will also bring some vanilla vodka and some orange sherbet for some frozen drink refreshment! See you all soon!
I'm not really a beach person either, more of a green, woodsy, tree kind of person, but I'll stop by for a little socialization. This summer I read somewhere (probably Pinterest) about a vodka rootbeer float. Now that sounds good on a hot day, sitting on the screened in porch, listening to the waves & the buzz of insects (that can't reach us because of the screening!).
I'm not that worried what anybody calls anything. I'm trying to learn how to relax enough to feel like a human being again. One of the ways to do that, I've been starting to notice is to get that I'm actually quite defensive and vulnerable. I'm sick of that but I'm even more sick of being the victim of everything for so long.
I don't believe in the world I live in right now because it's dominated by my reactions to all the pain I've now lived through. Even though I'm clearly me, little feels or seems normal. Instead it feels that it's more will and determination to keep going.
It's not all bad and some has been good these seven months. It really is quiet now. The stress is gradually letting up. My strong mourning seems largely spent. I do feel a little more like myself.
But I also know that too many things happening or certain things happening can shatter me or have major affects on me. I'm fragile and weird right now. It comes with the territory and is legally mine. It also goes with the territory. So they say.
I brought my foldout lawnchair. The rest of my stuff is coming later. I hear there are campfires along the beach. I'm going to sleep under the stars. I want to listen to the chatter and laughter of ordinary and optimistic people and fall asleep and dream.
I agree Elizabeth. Helping ourselves means trying to have forms of coping and one of those is reminding myself that it's ok that I feel unsettled afterwards because there actually is a lot going on. Patience grasshopper kind of thing maybe.
This morning I've had an unbelievable experience. It's the annual boy's weekend coming up which is the one thing I never missed where someone always managed to step in and help me have that weekend. I was a walking zombie at those weekends but something inside wanted desperately to have that one continuity.
I called my friend this morning who owns the cottage. Calling people is something I'm still learning to do. I found out he's going up today to fix a few things around the cottage and he asked me if I wanted to come up early. He was planning to get the groceries in Port Carling on thursday and I suddenly said we could do that together. We've done that before long ago and this is the first time I really do want to go there and go into town together and just be me.
The first time my reaction to something is to feel real enthusiasm for it in a long, long time. I'm looking forward to something. How about that? Well, I shed some tears of gratitude. And then I felt sorry for Dianne. But wow does it ever feel good to just actually feel that feeling.
So glad to hear Wolf! I know what you mean. I still remember the day I was walking at the Y and I suddenly realized that I had a spring in my step. I hadn't been aware that it was gone and I was just trudging from one day into the next. It was only after I felt it again that I realized it had been missing. It was a good feeling!
I think having something to look forward to that is outside of our daily humdrum life helps build the enthusiasm level. Mostly getting out of the house and away from all the chores that I don't have any interest in doing helps me.
Well...we've played baseball and nude horseshoes and we stood on top of a hill in a big thunderstorm and play killer hearts for tequila shots and we used to run around in the dark in a field of cows trying not to get run over while laughing. We had a private beer label one year where the eight of us are on the label. I still have one bottle. We competed in two teams for total points and the losing team did the dishes all weekend the following year. We often go swimming although it's brisk.
One morning Jim and I woke up really early. The mist on the lake was thick. The air was dead still and the sky was clear. We slipped out in a canoe just as the sun broke over the horizon and floated through this white mist up to our shoulders with our heads largely clear and looking at the huge, red, round sun. We paddled around an island looking at frogs and turtles and a great blue heron we startled silently slipping by. When we got back everyone else was still asleep. That was a morning to remember.
Most of us used to play on a basketball team together. That was mostly in the fall and winter. One year some of us were sitting in a van behind the hotel inhaling a substance even Ohio sounds like it might legalize. The smoke in that van was thick. There was a loud rap on the window. It was the police. They told us - I mean them - to get out and then one of the officers leaned in with his flashlight and looked around. Our friend standing there suddenly commented "lovely buns sargent" because his butt was sticking out while he looked around inside with his flashlight. He stood up and turned around giving our friend a priceless look. "We're staying in the hotel and won't be driving anywhere." he explained. The officer let us off. My friend became a lawyer.
Oh, wow. The canoe experience is really one for the archives. That is sort of why I like to get into the park...went out and walked last night as soon as I got home from the airport. And as I came back toward my house, there was a deer on my lawn munching on the grass...like it was welcoming me home.
It was very pleasant to visit with my daughter. She is very reclusive and doesn't travel, so if we want to see her, we have to go there. We did a lot of chatting, went out to eat one meal per day (breakfast and supper in, lunch out), played her keyboard a lot and socialized with her cat. She has an extensive doll collection, so we spent a lot of time monkeying around with the dolls. (Girl thing...guys won't relate.) She had picked up the DVD of Cinderella, so we watched that. Let's see...hung a new shower curtain...took some nice walks. She was very hospitable and solicitous of me...fixed me tea, made sure my bed was comfortable, etc. Nice to be pampered, that's for sure. Little things mean a lot, especially when you have not had that for a while.
Just a word on Section 8 apartments. Hers is a really nice, spacious, light, airy, one-bedroom. Her first efficiency in Colorado was not all that great (I never saw that one), but her case managers helped her move into a better complex, and this apartment would go for $1,000 per month market rent. (I looked it up online.) Her Section 8 rent is a little under $150 per month. So a very good deal. I would live in an apartment like hers in a heartbeat. It is in a very nice complex on the good side of town...she faces the pool and the hot tub, but she says that's not necessarily a good location...gets noisy. So if anyone on this forum is considering Section 8 at any time in the future, I would say that some apartments are good and some are not. Larry and I had helped a nephew get Section 8 housing in New York, and it was the same thing...he turned at least one apartment down, and waited a little longer on the list until a better one came up.
Wolf, I believe you definitely are a "young man". Going on an escapade with you BFF makes it so. Hope you and your gentlemen friends have a blast. There is life out there, Wolf, go get it.
When a teenager in Girl Scouts, we liked to stand on the edges of the canoe bouncing to see who was last standing! One time while backpacking in the wilderness, thought it was safe so we all went skinny dipping when her comes some Boy Scouts over the hill!! We cleared out and thankfully had our tents up already so we could dive in!!
Laughing and screaming all the way into the tents no doubt. Back then it would have been dumb luck to have a Kodak Brownie packed as one of the boy scouts.
I leave today. I spent a few days up there two weeks ago but this time I get to stay in the big house. Usually by end september Muskoka, like New England, is turning into a riot of colours. This year we're a bit early and autumn is a bit late so we might have great weather unless it rains. I never look at weather reports and I don't care.
It sounds like I'm doing well but it's a struggle. I said elsewhere that getting better still leaves the overall dial in the red zone and feeling better still means that overall I live in heavy (and displaced) gloom. It's all work to not talk myself out of it, to not get frazzled by it, to not get resentful because of it, and to stay and participate as long as I can. Not the boy's weekend - but everything else.
As I get better I get rewarded by seeing the complete mess I've allowed this house to become. Everything I clean shows me something else not done for years. Throwing out some old relishes and pickles from the fridge shows me that no one has cleaned the glass shelves in years which shows me the outside is covered in little bits of things which shows me the floor around and behind the fridge is filthy.
As I get better I get rewarded by seeing that I do have a list of things still from her passing I have to attend to like getting her RSP/401K stuff cleaned up. I see that life after alzheimers is still empty, lonely, and without much meaning except continuing and that filling that is going to take real time and effort. I really have lost trust and am fragile and I am bloody exhausted from just always pep talking and keeping going. I haven't arrived anywhere yet and I have been fighting for years now to keep going and keep going and keep going.
Grief: "You don't pay attention to me." Wolf: "Get over yourself. I AM you. Here, carry this."
I just got an estimate yesterday, and am having the whole interior of the house and garage freshly painted in early November. It needs it just in terms of a paint job, but there's a symbolic element to the project, too. (Fresh, new, clean, clean slate, etc.)
Wolf, your canoe story painted a word picture in my mind - I was there! Lovely...
Elizabeth, glad you are home, safe & recharged. Our livingroom, diningroom & hallway surely need painted. The kitchen needs work too - I just feel like everything is going downhill, becoming shabby & slightly dirty. I know what I want to do, but when or how is another question.
Right, Mim. That's exactly how I felt when Larry was going downhill. Like the house was going downhill, too. It's partly that they take so much time and attention, which is tiring in and of itself...but also that depressed, blah...yet anxious feeling all the time...is not conducive to keeping the house attractive.
From what I read it is mainly for people whose significant other has passed. I am going to pop in here daily though as I feel so much of what is being expressed.
My husband is in a special facility quite a distance away due to his behavioral issues which can't be managed in a regular long term care place. For me to have a hour and a half visit with him means a 11 hour day of travel and ferries. When I saw him on Monday, for the first time, my very presence caused him increased agitation. It became evident I needed to leave and had to have the staff help me because my husband was determined to come with me (he is in a locked unit). It was an awful experience for both of us. My husband got increasingly agitated after I left and even though he took some meds intended to calm they did not work. He looked for me all day - how devastating is that. He hit a man later and didn't sleep at all.
The health care team has asked that I not visit for the next while as my husband's paranoia and delusions have really increased and he is trusting no one including me.
So I am in a limbo and know this beach house will be a great place as I read how others are managing and engaging in various activities.
I would not have made it through Christmas the last couple of years without the Lodge. Now I can delight in sharing with all of you at our beach house year round.
Going outside now to continue to try and level my new raised garden bed. Been working on that the last couple of days and do you think I can get that darn thing level.
Katherine - in one respect we all have lost our spouse, our spouse as we knew them.
I am sorry that they asked you not come, that his paranoia and delusions are getting worse. How horrible and heart breaking to do all the traveling just to have to leave. (((hugs)))
Maybe we can all gather on the beach tonight and watch the blood moon and eclipse. I know when i took the dog out at 3:30 it was so bright and beautiful out - you could probably drive a car without lights on and be able to see the road fine (being aware the other drivers might not see you). I hated coming in. I can just see that bright moon reflecting off water whether lake, river or ocean.
katherine, all of us have an afterwards we have to deal with so everyone is welcome here,
About 10:30 is when the lunar eclipse starts. By 11pm it should be clear. That is roughly EST times but this is a continuous event in real time and artificial time zones don't apply. It should last several hours.
It's called a blood moon because the earth is between the sun and the moon. The earth's atmosphere reflects blue and the moon during this time is lit up by sunlight that has gone through the earth's atmosphere while direct sunlight is blocked by the earth itself. That's why it appears reddish.
The moon's orbit is not circular even though it's not far out. At times the moon is somewhat closer and somewhat further away from earth. That variation is about 14% from it's normal size. So right now the moon appears 14% larger from average.
edit - when you see the red tinge then you are looking at recycled light. It's gone through the earth's atmosphere twice. Once on the way through where the somewhat scattered sunlight lights up the moon dimly while the earth blocks the real sunlight and then reflected back to you through the atmosphere a second time.
10:40 p.m. EDT. I just went out and looked at the lunar eclipse. Although it's a full moon, I can hardly see it at all -- it looks like it's obscured behind a cloud (but it isn't) -- and what I can see is more of a yellow-orange blur than red, but definitely not the clear white it usually is.
11:20 p.m. EDT. A tiny, thin slice of white and the rest of it a reddish blur.
11:50 p.m. EDT. A clear bright white crescent-like fat "quotation mark" on the edge of a reddish blur.
12:30 p.m. EDT. The moon is almost full again. Clear bright white light, illuminating the patio and back yard.
Here is a moon poem for all you cat Iovers:
THE CAT AND THE MOON by: W. B. Yeats
The cat went here and there And the moon spun round like a top, And the nearest kin of the moon, The creeping cat, looked up. Black Minnaloushe stared at the moon, For, wander and wail as he would, The pure cold light in the sky Troubled his animal blood. Minnaloushe runs in the grass Lifting his delicate feet. Do you dance, Minnaloushe, do you dance? When two close kindred meet, What better than call a dance? Maybe the moon may learn, Tired of that courtly fashion, A new dance turn. Minnaloushe creeps through the grass From moonlit place to place, The sacred moon overhead Has taken a new phase. Does Minnaloushe know that his pupils Will pass from change to change, And that from round to crescent, From crescent to round they range? Minnaloushe creeps through the grass Alone, important and wise, And lifts to the changing moon His changing eyes.
Thanks for the cat poem, Myrtle. Last night we had clouds and rain...didn't see a thing. Oh well. I am going to look for pictures of it on the Internet. But I had an interesting evening anyway...will post on the Widows/Widowers thread. A new experience for me.
Katherine, meant to post yesterday that of course you must come to the beach house. I am just cringing for what you are going through. Sending support by ESP, and virtual hugs. ((()))
You're welcome, Elizabeth. In case anyone mistakenly thinks I have some vast knowledge of poetry, let me confess that I have a book called, "A Little Book of Cat Poems," which I bought at a Hallmark store a long time ago. So if anyone ever needs a cat poem for a special occasion (or even just to read a poem to your cat), please let me know and I will look one up for you.
There's an article in the New York Times International September 26 edition called A Grief That Won't Go Away. Here is an excerpt:
"She had taken care of her husband for the last eight years of his life, through his blindness, cancer and heart failure. After he died in 2002, she sold the house they'd shared, finding it too filled with memories, and moved to their country home in upstate New York.
Friends thought Anne Schomaker was coping well with her loss, she reaclled. "I volunteered, to get myself out and doing things, to fill the gaps," she said. "I had many interests." She traveled and even tried dating again.
"But I wasn't really doing well, said Ms.Schomaker, 73. "I had terrible pangs of sadness and despondency. I was missing my husband so badly."
Even after seeing a therapist, which helped, she suffered from nightmares and couldn't bear to hear arias from their favorite operas. "The pain just didn't go away," she said.
The death of someone beloved often brings deep sadness. Usually, however, the intense grief of early mourning begins to ebb as months pass, and people alternate between continuing sorrow and a growing ability to rediscover life's pleasures."
Ms Schomaker entered a program for 'complicated grief' and "she is grateful for the complicated grief therapy she received"
"It gets you thinking about your loss in a different way," she said. "It encourages you to move on, because there's happiness ahead of you."
...
Is it alright for me to feel happy? Yes. Is it alright for me to let go of Dianne? Yes. Is it alright for me to try and find ways to do those things? Yes.
In my world the last threat from Alzheimer's is that I remain a prisoner when the cell that was locked no longer is. The journey through healing from those years while mourning is what I called a blind spot and the NY Times article called 'complicated grief'. I'm glad to see evidence that it's beginning to be recognized as an actual thing. Approaching it that way has broken Ms Schomaker's inability to get up and walk out of the cell. She still loves her husband just as much I bet. And is glad to be out of the psychological quandry I bet.
I agree with Wolf's three "Is it alright..." questions. I'm not sure that I'm "letting go" of Larry exactly, but he's with me in a different way, and he's not really interfering with my ability to move forward. I feel him as a sort of benign, very subtle "vibe"...definitely a positive, good kind of thing...I think Joan is having that experience with Sid, too. (The new apt., etc.) It just about killed me taking care of Lar and then losing him, but I've got to say that having a close and happy marriage all those years was a gift and a blessing that still seems to keep on giving. It just puts my head into a good place to know that I had that. (Especially now that I don't have anything like that anymore...DD and the grands are not even close...but it's encouraging to know that anything's possible.)
So one thing I'm going to do for fun is try to learn three dances that the group was doing the other night: The Electric Slide, the Cuban Shuffle, and the Boot Scoot. They are probably on Youtube--I think I can just have the laptop on the kitchen table and turn on the videos and try to learn the dances by myself, so if I go to another Singles Club dance, I can just get up and do them. (Heel-toe, there ya go, doing' the Boot Scoot Booooooooogie! Hee-hee.)
Now there's an activity for us at the Beach House!
I've been thinking about how much almost anybody could have stood in for me those last five years because of how little of me there was in them. I know that may sound overdone but I honestly don't believe it is. The guy sitting here watching the approaching storm way over there isn't the guy that dreaded the phone ringing and seeing the nightmare environment she was in (they were great but it was one flew over the cuckoo's nest some days) when I went to see her. I would describe myself in those years largely as hollowed out. Someone overstressed and over wrought so long I was basically a shell.
This summer felt so different because it was better. I like better. No. I'm desperate for better. She just died in February and I have notes that show in May still I was doubting that I could do this - which is that I might ever be even just mostly neutral again. This summer was much more discrete and full of things. I didn't skip out and do them all but they crossed my mind more and I did some of them. Doing some things. Getting some things. Enjoying some things. Almost unbelievable.
I live in saddness. I know why. I live in the after effects of war. I know why. I see around me the worry of growing older and of diminishment. I don't feel diminishment and instead the changes this peacetime brings instills confidence and enthusiasm that even though I live in the saddness of massive loss and in the afterworld of alzheimers - I can see and feel the gradual transformation.
I have to remind myself almost daily that alzheimers was. I don't block it out. I just look everywhere else. I surgically removed Dianne from that in my mind and even though she doesn't answer my occassional comments, I see her as whole. "I'm sorry" is what I say the most. I'm sorry you don't have this.
It's tricky stuff because I'm trying to get past dementia and trying to move 'forward'. There isn't any alzheimers forward for me. It's all behind me. It's the source of a lot of pain. So the usual scene is that I remind myself and then authorize myself to look elsewhere and that I will remind myself then again. The last thing I want to do or believe I should do is dwell on AD and the hundreds of horrible moments for both of us in that. Far better that I keep wondering why I feel so bad and then slapping myself upside the head.
It's tricky stuff because I'm so $*#&#@!! afraid of being hurt more. I got scalded. I got third degree burns. No more please. And yet I have to risk in even simple things and certainly if I'm to have feelings that aren't just careful and defensive and protective and suspicious because I have all of those. (If you need any of those for your set, call me, and I'll ship you some)
Everything that I did which feels like something involved risk of some kind and that risk was always to my feelings and my lack of comfort zone.
These are all parts of the truth but I'm not sure they tell the story. I came through this like Patton with tanks. You're welcome. There are times you want to come in slowly and scout out the territory first. This isn't one of them.
[George C Scott voice in the General Patton tone]
Now hear this! Now hear this! We're here to take fun back. Give 'em h*ll. That is all. Move out!
How am I? Can I have ANY fun? Those are different questions. I focus on the second. And the answer is yes I can. Not every one is a Maserati and some are Lemons and sting but I want more please. Take no prisoners!
(I'm playing a deeply immersive new wargame full of reams of stuff to learn. Going to watch the Yankees play tonight. Two salmon sandwiches are all I'm eating. Plus a gallon of strong coffee with 10% cream and I smoke all day. Hey! You! Get off of my cloud.)
Hey Wolf...yes, so much of this sounds familiar... "a deeply immersive new war-game full of reams of stuff to learn." Well, I hope it isn't really a war-game, but it is kind of anxiety-producing. So much is somewhat new...nothing in my life is the old tried-and-true routines of job, husband, NY...it's not just that everything is different now, but that I'm not exactly sure in and of myself what I want to be doing. If that makes any sense. Like I seem to be doing more and more child care, getting more and more involved socially in the Ohio life...but I'm not sure this is what I want, and with a lot of the grieving energy dissipated into a sort of blank calmness...I'm not in total misery all the time...but I can't quite define my mood or my happiness level...I just feel kind of empty...like a blank slate. Like you said...it's been and is a gradual transformation. I'm just not sure what I'm transforming into. I know I have to shape my own life or others will shape it for me...but I'm still in a state where I like to do a lot of just "being" rather than doing. My mind is in kind of a "Zen" place...not sure I'm ready to commit to anybody else's agenda at the moment...or ever. Well, stay tuned. I guess our Beachhouse is a good place to veg out with likeminded people and get our acts together.
Hi Elizabeth, I hear you and can see the same considerations which in a nutshell for me is that I'm sure I'm not myself enough or connected to what I actually want enough to make any seriously considered life decision (like moving to another city). That wouldn't stop me from trying something I think might work.
There are a lot of different threads that run simultaneously and I find it helpful to think of a loom where the different threads change colours and thicknesses but what comes out in the mind looks like a rug. That's true I think because we make singular decisions and depending how in touch with ourselves we are we might have more confidence in it. But that's where the second part comes in where we take a chance and go with the gut.
I find one of my big hurdles is that I always try to solve. There is no solving this except with effort and time. I'll give a couple of hypothetical examples.
The power of grieving for a life partner. I have no idea but I would say something like 100% day one down to perhaps 20% in year three. Progress is when spikes and plunges start dominating the middle stretch (move forward/move back/feel strong/feel lost). It's something roughly like that.
The power of alzheimers effects. This is different for everybody but I would say definitely present in the months and year or two afterwards. When I first felt confidence and seperately when I first felt enthusiasm, I felt like doing cartwheels. Until I really felt that I didn't really understand how much they were missing for years. That's alzheimers effect IMO.
The thread of looking forward I would call it. I came to understand why AD patients don't look up to see the locks high on the door. I had developed a bent over mentality because there was so much incoming for so long. I think there are a lot of specific things like this.
Try combining just those three ideas into a weighted average graph of you. That's what we're doing when we consider our options knowing they come to singular points. Move. Not move.
Look at what you said about being in the Zen place. I get that. I also believe the walls of my Zen are fragile in the engineering sense and it works because I manage and protect myself. That's a positive forward thing though. Feeling a growing comfort zone has to be positive.
From a practical point of view (and this is just talking), I would weigh the need to be part of that scene you know versus the probability that you will do the work to establish yourself into somewhere else. On the other hand, I'm staying here for a while and just this month found out two of my neighbours are moving. Things change anyway.
One thing you can do is list the pros and cons on two sides of a paper with a line down the middle (one or the other). No babysitting. No family right there. Lose the Ohio stuff. Make sure one line is your worst and best outcomes on each side. When I take great pain to put down the truths, that can help me sometimes to look at the whole thing. Throw it out later if you like.
I was having a bit of fun above but I can tell you something I've learned these last months. When I don't make changes things tend to stay the same and when I do change then they tend not to. Wherever I'm going it ain't where I've been and so you jump in the jalopy and go somewhere else. Physically or not. They come with us wherever that is.
You said it all, Wolf. You just described my life. And writing pros and cons on two sides of a paper is something that I have not actually done, but was thinking I should do.
I agree that recovering from being an Alzheimers caregiver is entirely different from a recovery from...let's say...the death of a spouse from heart disease or cancer. The Alzheimers has harmed us as well as our spouses...in a way that other physical ailments don't. I was just thinking about what my life would have been like if Larry had dropped dead suddenly from a heart attack. (Which is what I would have expected...much more likely than a long, slow mental decline.) I would have been devastated and blown away...but that long-term, insidious damage...the exhaustion, the isolation, the loss of self, even the financial costs...would not have been there. Sigh. Well, we don't get to choose, do we?