hopefully this mood you are in will pass by tomorrow. You are an excellent role model for us, because when you have a good day, which, for the most part, you seem to be having more often, we see how you are moving forward – a few bumps as you try to make decisions about very important things affecting your future, but you are very brave and positive and smart. You are always willing to share your advice and experience, and that makes a huge difference to those of us walking behind you.
The song by Enya is so beautiful – it says what many of us feel, and for me listening to it and looking at my DH’s photos brings tears, but it also releases feelings that we need to be able to feel and that can allow us to mourn. At least for me. Sarah MacLachlan’s “I Will Remember You” is also beautiful.
Maybe tomorrow you will be inspired about where and what to hang in your living room.
Do NOT hang even one picture of an old freighter on your wall unless you really love it. (Do you remember the song about "The Wreck of the Edmund Fitzgerald"? It was really gloomy.) In fact, you should not hang anything on your walls unless you really like it. It sounds like you need to read Marie Kondo's book.
I've always been kind of fascinated with the Edmund Fitzgerald--I was born in the Cleveland area, and several of the crew were from there. And believe it or not, I like the song--find it emotional and evocative. I usually find my EF pictures kind of uplifting--like memorializing the courage and fortitude of the crew, whom I think must have absolutely done their very best against impossible odds--just like Alzheimers spouses do.
But before I read Myrtle's post above, I had come to the same conclusion--that only what I really like--what is happy, or uplifting, or attuned to nature--is going up on these walls. With that in mind, my "Happily Ever After" country sign will be the first thing I put back up...and after that, I'll take it one picture at a time...starting with what makes me feel good, and working my way through. Anything doubtful just won't go up. I do have a yen for "Earth Rising Over the Moon", which is the photo taken by the Apollo 8 astronauts from behind the far side of the moon...but I'm finding that nice prints are expensive. I read that it is the most frequently purchased space photo.
Am feeling better tonight--went out and bought a big chocolate bar and had it with a piping hot cup of tea with sugar in it...then went outside for a 25- minute walk in the park. Heaven. Should have pitched the lettuce and just had some chocolate a lot earlier...and quit the whining and started the walking. Nothing like fresh air to calm you down and lift the spirits.
Forgot to say that I do own Marie Kondo's book, The Life-Changing Magic of Tidying Up. It really, really helps me sort out my books and select those to be donated. But I can't fold clothes her way. My clothes refuse to be folded properly--just sit there in messy, irregularly-shaped lumps and sneer at my efforts. The trick is to shine a flashlight into the dresser drawers to find things--don't tell Marie Kondo I said that!
Sorry for all the stupidness I've been posting above. Slept eight hours and woke up realizing how shallow it is to be worrying about how to hang the pictures and sort the books, when others "downstairs" are still dealing with sleep deprivation, worry and uncertainty, not knowing when the next poop cleanup will come, etc., driving on icy roads to nursing homes, etc.
Dreamt about Larry all night long. Realized that we are both in much better places now, and I for one, don't want to let the Alzheimers shadow mess up the whole rest of my life.
I agree with Mary and Paul. I also believe these things manifest themselves in their own way to each of us. Sometimes hanging a picture is not just hanging a picture. It's a viseral experience that represents things to us. Notice that they painted but you are hanging the pictures.
I don't think it's the pictures themselves you were actually talking about.
You are right, Wolf. I'm not the world's deepest thinker, but I know that with my choices of pictures and wall art I'm saying goodbye to certain things, and embracing clarity and a new direction. I'm taking a ridiculous amount of time over it, but my bedroom is already looking much better and much more like "me"--it's a little more bare, with some natural touches added--I took down the crucifix over the bed, and got a different, more natural looking one--a St. Brigid's cross made of reeds from the River Shannon in Ireland. I wound a winterberry garland of red berries and leaves (silk, not real) around the headboard. There is a green plant in there, and a red poinsettia. It still feels homey and like "our" room, but it makes me feel good to go in there...not sad. And I did put "Happily Ever After" back up above the kitchen sink. Larry and I had our "Happily Ever After" together, but I don't see why I can't continue to live "Happily Ever After" by myself. Anyway, that sign cheers me up. I put up one picture of the Edmund Fitzgerald--the calm, nice painting where the boat is cruising down the St. Mary's river. I'm not going to put up the one where the ship is in wind and waves...not sure what I'll do with that one...probably just store it for awhile and think about it. And I did order a big framed print of the Apollo 8 astronauts' photo "Earth Rising Over the Moon" from 1968. That is one of my favorite photos of all time, and I hope it looks nice where I'm planning to put it. DD is complaining that the house looks too bare, but I don't care--I am taking my time and feeling my way--it isn't just my house, it's my life--and the old familiar pictures and objects aren't always a good fit anymore.
While my wife is alive she is in a locked down ALF 90 minutes from home and she is very unlikely to ever come to the house again. Some stuff I am slowly willing to change (just boxed up some of her books so I can use the book shelves) other stuff I won't even though it is in my way. Doesn't help that my wife seemed to abhor white space on walls and surfaces, photos everywhere.
While most of us would probably agree that "things" are not important...people are important, "things" are not...I'm finding that "things" are remarkably evocative in making me feel comfortable in this woodsy little house in the Heartland. I'm doing a much better job of working on the public spaces than on the private things. I still have not cleared out "his" top drawer in "his" nightstand...with his wallet, tobacco pouch, shoehorn, eyeglasses, comb, rosary, NYPD badge in the leather case, , etc., etc. The dresser drawer where I put all the funeral stuff--paperwork, death certificate, all the sympathy and mass cards, those little remembrance cards that you give people, the nice wooden memory box that came along with the casket...I just keep it closed. Now after 16 months I think I'm ready to go through and re-organize that stuff.
This is beyond weird, but while I had this screen open and felt supported by the group, I just went and threw away his toothbrush and deodorant that I was keeping. I took the lid off the Old Spice and smelled it, then put it up to my cheek so where it had touched his arm, it touched my face. Then into the wastebasket. OK, tears now. I am beyond pathetic. Thank you all, I could not have done that without you guys at my side.
OK, end of bizarro behavior. I'm signing off to make some tea.
I used to be hurt by seeing romance. I used to have to look up what day it was. I used to forget how many days since I'd shaved or changed my sheets. I used to have piles of laundry in corners. I used to have real problems going out. I would sit on the stairs with my keys in my hand not sure why. I used to swing at people in my mind because it was stunning how much it hurt to be outcast yet again. I hardly looked outside and when I was outside I hardly looked up. The amount I blocked thoughts out of my mind is only now starting to show itself.
I used to live in a little ball that was so tight I had no room to scream. I used to crumple suddenly because feelings were bursting through and I would yell or cry and then go on and I didn't realize that wasn't normal because having any thoughts about me was just cruel and I was taught just as cruelly to not have them - for many years while the vice grip kept being tightened by deteriorating everything.
So when I realize I'm nearly out of cream and could use some cooking oil and I grab my keys and slip into my sneakers and am in the car pulling out just thinking about what else I could use and that it looks like rain and I wave at my neighbour as I drive past - I know that things are getting better.
When I hear the radio or the television guy say something and answer him out loud while I'm cooking dinner which I want to have ready when the game starts and I open a letter from the bank to Dianne thinking "what do you want now?" instead of anxiety or concern and I notice that it's sunny or windy - I know that things are getting better.
Do I feel happy? No. I don't think normally yet either. Not my job. My job is not being a patient or a victim or a sufferer even though I am all three. Like all people everywhere who want to learn something new - I start and then I keep trying and time passes and if I really am trying then I'm getting somewhere even though that's still a subset within a larger malaise.
"Are you freaking kidding me????" I screamed when the dust bunnies came back in five minutes. I spend my life bent over picking things up. I make dirt so I have to clean dirt. I keep reminding myself that's it's zen - not accomplishment. I'm never done - instead I learn the art of doing it forever. I'm getting better at it and have no loads of laundry anywhere.
One of the most helpful things I did was realize I need input and so I now read the newspaper and my weekly magazine and I watch some progams on TV and the internet that are on subjects that interest me, and I listen to the radio for a while and I spend some time patting both of the cats (two thumbs up from them) and talking more to them.
As a result, I have things going through my mind that are now and real. Syria is real and the American elections coming are real and the economies are real and climate change and Ricky Gervais hosting the grammys and so on. The truth is many things are happening and no one has ever had such a capacity to tap into what we want as we do today.
In all cases I believe it swings on our ability to find things within that we can come to and to begin collecting those into the new nest that increasingly over time becomes the changed us.
I've done absolutely nothing about new people in my life. Sooner or later I need more of that than I have. But I'm fighting several fires at once. I entered grieving already a very earned bloody mess and with both of those going on, I'm to find new people to know and new people to hang out with while I discover what decade it is and where I live.
Charming. But also my real world. The world that I own lock, stock, and barrel and the world that I will eventually run like a swiss watch in that no watch is allowed. I've never worn a watch and was often asked how I knew what time it was. "You're all wearing one." I answered. Now what time it is rarely matters. What time I'm having is the focus.
It takes time to heal from what we went through. That statement encompasses many things and then summarizes just like when someone asks us how we are. But real healing is a myriad of specific things and specific blocks and specific triggers and specific reactions that likely all have to change in some way to return to a calmer and more balanced state of mood.
In the vast majority of cases, all this goes on alone. The majority of us are alone in the immediate afterwards. That means we have to change and we have to initiate that if we want to move faster than time does. We don't have to. Just if we want to change faster.
Eventually, our own initiatives may not be noticed as fighting or pushing, We may feel well enough with enough time. I don't shop there. Grieving around here is more like a navy seal operation. Or like getting the thirty year old to move out of the basement. Pick your metaphor.
I've got reasons to complain but I just don't want to hear it. The problem is that life has been seriously abusive and I'm not floundering because I'm an idiot anymore than a person staggering out of a torture chamber for years is a laggard for not dancing right away.
But I have that same person's problems. I have to regrow and believe where dances in their real sense and real vitality may be a bit down the road but I will never go to them and never enjoy them if I don't change to believing I am free - and that carrying the spirit of meaning and carrying the plethora of memories doesn't change that truth one bit.
One step at a time they say. Yes, but I also have to show my work to myself in some way and know some of the steps I have taken, am taking, and want. That's not a military exercise although it takes force of will. That's discovery. Of me. Not a waste of time because if it doesn't come into play yet - it is likely to some day.
Can I have a little fun? Can I relax? Can I engage in some things? Can I care? Can I want? Can I move out of the basement?
We're all trying to move out of the basement. I'm just sitting here this morning (fighting off a cold that started yesterday--booooo) thinking about the incalculable damage this disease does to people. I didn't watch Obama's State of the Union speech, but I know that he's being praised for setting Joe Biden on to a mission to cure cancer. There's room for a whole discussion about that in and of itself, but anyway...since Alzheimers has been identified as the biggest public health threat facing the new millennium, I thought that would have been the more sensible way to go. Of course, we're making lots of inroads against cancer. It's an easier target.
But anyway, keep on truckin', Wolf. I think we are getting somewhere, but it is going to take a while and be a gradual process. If you can stand one more sentence about my pictures on the wall...I am liking the more spartan look of the house, without a picture on every wall and a memory with every picture. Not having all the "home" stuff displayed...with some freshly-painted walls left bare...just seems clean and new...perhaps a metaphor for a life that is swept bare of the old ways, but that is clean and empty and ready for new possibilities.
What you're doing is what I advocated. That we talk as openly about this part of the alzheimers experience as we did when we were active caregivers. It's not the main event which is to help get through but it's not only equally valid to caregiving for our spouses - it's the thing every one of us faces whether it's lewy body or early onset or any other form.
I don't mean that's why you're talking about afterwards but that it must be clear I support doing that 100%. There are far more people reading this board than post. I did some work recently to see and many continue to look. That's because there is a deep connection with people/places where something like this happens to us in our lives.
The important part is when we read something that we can relate to and ideally when we get someone else to talk. If we are stuck and we begin talking about it with others that know - watch yourself get somewhere.
You talk about the pictures all you like. You may not realize you're the only other person doing this and you are far more accessable and relatable than I am. Continue to share your journey because you are changing the conception of how we should be helping each other about 'afterwards'. That it's alright to talk about it and help each other now too.
We are so cruel to ourselves and so blind to it because it's us now that need almost as much help as our poor spouses did and even the society here doesn't believe that the greater good is to help each other out afterwards as much as through.
What a planet. How ineffable that the beasts love and sacrifice for each other and show kindness at times. What do we suppose a God would be doing other than infusing meaning into matter. It takes time. Yes.
My first point is to understand why I compare with my old world so much. My new world is unknown. I can sketch some fantasies into it but it's unknown. My old world is what I have as frames of reference. That's why I compare.
I have two friends who didn't do anything wrong all the way through both of whom I repeatedly dress down mentally with a suprising amount of venom. In part they're risk points because they can hurt me badly by turning on me now. In a larger part though, I believe, they are what is left of those I really knew and I have masses of unresolvable conflicts where I must have some kind of foil that makes 'sense' to me.
What I'm saying is that very deep feelings find an outlet. If that isn't externally envisioned it will be internally envisioned. After eleven months I'm finding those that are still in my life draw far more displaced feelings than those who are long gone from my life.
Those that are still in my life represent the other side of the chasm created in my life by alzheimers. They remind me of that other life by their existence and many from there hurt me badly - so it's not hard to understand, just hard to resolve.
I can also understand that I seek hope or something to hang on to or something to lean on (God forbid), and I need far more than they could hope to provide me. Just as I can understand that parts of me are desperate for such a thing.
I always say we are so cruel to ourselves and I can tell you it takes resolve to remind myself that what I went through NO ONE wants to go through and I seriously need to be understanding to myself here. Of course I'm doing all these things. Try to resolve specific things and take those out of the log jam.
It is only when I accept what has happened as truth that I begin to accept it as living fact. I believe that when we don't, we often wonder why things are so hard or why we are so negative or why we have so little going on. Our will to survive operates by moving the transfixing horrors away from the conscious mind. It does more. It tries to feed the conscious mind bits that seem digestible because our minds know clearly the great big ball of mess that should be attended to - but the spirit has been tortured beyond recognition and our mind is on our side.
Even when the opera in our mind is bad memories you can believe me that they are the memories about this you can deal with right now. Remember also that if you have always been hard on yourself or easy on yourself or neglectful of yourself - that has not changed. The kit of what you developed that became you is what you have now plus dementia caregiving and serious mental duress experience.
You need new skills. Cooking for one while in depression and grieving. Now there's a book that would sell well in a narrow target audience. Discover yourself while isolated in a deep hole. Am I exaggerating? I'm just scratching the surface.
There are at least two sides to all things. Anything that takes on dimension takes on perspective. Everything with dimension has sides.
If I cannot take away negative then I might be able to add positive. That is sensible because balance is a measure of positive and negative - or the net effect of at least two sides. Our spirit experiences all sides of things, and what we think of as ourselves is the expression of the balance of all that. We call them moments because we experience them directly.
My job is to help myself as I can and part of that simply has to be learning to carve out moments where I am not the victim but the aggressor. That sounds male but think of it as getting up to help a bunny in trouble and making sure that gets real effort.
We sit motionless but we are really the panicked swimmer that is trying to climb out of the water. Want the definition of tortured and abused in real life? You.
You change with new eyes and new perspective. You stop the rut running for a moment and look with open eyes to find a thing you choose. I keep Dianne's cross stitch hanging and her shadow box on the wall because that is still Dianne in my life in real ways I choose but I am almost done throwing out her clothes, and boots, and toilet things, and hats, and shoes. I am also keeping some things like a few dresses and a coat and a pair of shoes. That is my art in the life I now live in and am learning to choose and express in.
With each positive no matter how small, I place one thing into my orchestra which we all have and might benefit from recognizing as such and appreciating. By recognizing those things as things I value then I appreciate them. I am simply looking from a different side. But they are real and as such they play that way in my thinking. And they cumulate just as bad things do.
You may not be convinced that all things have sides and that reality is dominated by the sides you choose; but, I am. When I look with fresh eyes and allow myself to feel, I often find something that then changes and becomes mine more.
I'm ruthless on my targets; I'm not talking pollyanna. There's a real you here in the now and time is passing whatever is going through your mind. Change what is going through your mind for a moment, shut it off and listen. Touch the strength that sees you through these things and look around and change something.
We are both cluesless and sublimly capable. That's why we make good television. Remember that the hero everyone needs sunglasses around they shine so brightly felt only one thing when they were doing the heroic deed. Fear. When you grow, when you learn, when you change, you always feel the same thing. Fear. Well, don't for a minute. Instead shut it down for a minute. You can do that. After what you got through - are you kidding me?
There are a lot of good nuggets in there, Wolf. I could address any of several points, but what's speaking to me the most is, "There's a real you here in the now and time is passing whatever is going through your mind." It's easier to grasp if the sentence is divided and punctuated. 1. There's a real you here, in the now. 2. Time is passing, whatever is going through your mind.
For myself, I have to figure out who I really am without Larry. I was never one of those people who subsume their identity with their spouse's, but boy, did his loss ever tear apart the fabric of my life. Putting together an authentic life that feels right and gives me real joy and satisfaction is not an easy thing to do. It isn't possible to just pick up the threads of where I used to be, because so much of that is gone with the wind. And I am so different now. The AD process has twisted and changed me, that's for sure. (I don't mean twisted in a bad way...just that the whole "shape" of me is different now.) Where I used to be a bred-in-the-bone caregiver, now I am much more interested in seeing if I can do something a little more skilled and creative with my music and writing. I will never really be a musician...lack a gene somewhere, I think...but I enjoy just putting together playlists (i.e. played by me, lol) to illustrate my own life, so to speak. It isn't that "good" and probably wouldn't mean much to anybody except me, but I like the stuff I play, and am playing a lot more since now I am by myself with nobody around that my deplorable practice sounds can disturb. But it is writing that I really want to pursue--and I am--and this speaks to the second part of Wolf's sentence.
"Time is passing...whatever is going through your mind." To me this says that even if I'm not totally ready, mentally and emotionally, I have to try to make the most of the time that is left in my life...when I'm not yet frail and fragile, when I'm not yet forgetful or confused or laid up in the hospital with God knows what--when nothing too dire has happened to my health yet. Because, let's face it, at 66 there may not be that many fruitful years left. We just lost David Bowie and Alan Rickman in their sixties, just to mention two well-known examples. So I need to keep the post-Alzheimers-stress-depression--isolation--blah---so what---blah to manageable levels and try to function anyway. I think I would feel bad if I got diagnosed with cancer or something in a year or two and had not even tried to make a creative contribution when I was still able. My whole life can't be defined by caregiving and AD caregiving.
So my "Earth Rising Over the Moon" framed picture arrived, and I hung it right up on the wall. I love it--it suits my mood to perfection. The fragile, beautiful blue Earth seen from Space...with the feeling that as fragile and ephemeral as life can be, it is worth living no matter what...and it is full of unexplored possibilities...is just calling my name right now. So...onward!
I agree with you wolf...at least the parts that I understand...ha! One year today for me. I have made great strides...I think! Today I was in a neighboring city that I only frequent very rarely. As I drove along I passed approx. 100-150 motorcycles going the opposite direction. Many folks would have paid little attention to them. A few were probably annoyed by them and the noise. I felt like they were placed in my path today just for me. Ya see, my guy was a motorcycle enthusiast. We had one of those big Harley dressers. We did a lot of traveling on that thing. I think I was placed there just as they were to be a "wink" from God today. I know they were probably going to a rally somewhere or perhaps attending the procession of a fallen fellow rider. But, in the unlikely circumstance of me even being in that location...I choose to believe that it was just for me. I like your "cooking for one" reference. I have actually cooked a meal a total of 4 times in the past year. A pot of spaghetti sauce for my grandsons, 2 pots of chili and a complete meal just 2 evenings ago for my daughter and her kids cause she has been sick and particularly loves the meal I planned. But, I really do feel that I am climbing up from that deep hole and although I keep my head low (for fear of what may come my way next) I know that after what we have all endured....we are really capable of handling about anything else that comes our way. Just not sure I want to anytime soon!
I am enjoying seeing everyone's progress out of Alzheimer's. Like others have stated, this dang disease changes one on a very deep level. It is 8-1/2 months and I am definitely having more good days than bad. The other day tho I got the mail and had a huge bill from the hospital and it freaked me out and sent me into a grief attack. It just brought up all the feelings again-- Horrible. Had to call the hospital and Medicaid but took care it is. On a positive note, I replaced my toilets which was long over do and I got myself a new I phone for my birthday. Having fun playing with it. I have a new granddaughter due Feb 13 and am planning a vacation in May. Some of the changes I have noticed in me is that I am a lot more appreciative of life and what I have now than ever before. I also notice I am better able to,take each day and am not so focused on the future. Today was a good day.
Good thoughts, CO2. I have just been sitting here by my fireplace enjoying the evening and looking at my new "Earth Rise" picture. It has no memories whatsoever of anything--it is just something I like that has nothing whatsoever to do with Larry, with Alzheimers, or with any of that old yang.
This morning while reading the NY Times I came across this thought . The article was nothing to do with AD, but I thought this sentence really spoke to us as AD widows/widowers:
"Let go of who you were and focus on who you'll become."
Today I picked up one of those Himalayan salt crystal lamps and put it in the foyer instead of the small crystal lamp that my mother had wanted me to have when she died. I like the crystal lamp, but it held such memories of my mom. The salt crystal lamp is warm looking and kind of "new age", feels very "natural." It is one more things that makes the house look different than when Larry was alive. Last night I went to a once-a-month writers' group that meets just two or three minutes away from my house. It is made up of serious writers, some published, some not...some published in one genre but trying something new...it was a very interesting meeting. Again, a step forward and away from the old life. We all set writing goals to meet before our next meeting, so I will have to quit moping and meet some daily page goals.
Being almost flat on my back with a bad cold for the past five days (I was just barely well enough to go to the meeting) has actually been good for me. I realize it's not so much Ohio that I'm unhappy with...I really don't enjoy so much involvment with DD and the kids. When I'm alone...sick or not...I really enjoy my time to myself and not feeling constrained by cooking and babysitting. Hmmmm. And in having time to crunch the numbers: It will cost me an easy $10,000 to $12,000 more per year to live in NY, no matter whether I buy something and pay taxes, or pay rent every month on an apartment. It isn't that I can't do it, but it's a matter of what I choose to do. I still have to get up to NY, talk to my friends, take a look around, and probably will just go with my gut. But it's easy enough to get up to NY from here--an easy one-day drive in good weather--eat breakfast in OH, get on the road...sandwich in the car...and have supper with my friends in NY. And with the money I can save living in this low-cost-of-living area, I could visit NY and stay at the Waldorf Astoria if I wanted to. (Joke.) It's more likely I would save the money to pay for a nice senior ghetto later on. I can see that I am a Bad Grandma, don't want to be the Nanny, and need to set some huge boundaries. My other DD in Colorado, who is very smart, disabled or not, said to me that I shouldn't let myself be pushed out of Ohio by DD and the grands if I want to live here. She's right too. Disabled DD also said if I decide to stay in OH and just travel to NY, that I should set boundaries on what I'll do for DD/the grands, and that I should carve out enough freedom to be able to go to NY, Montreal, or Ireland whenever I want.
Forgot to say that when I think about what I really dislike in OH, it's that I have so much involvement with DD and the grands. It's not like anything is reciprocal. I could have been dead in this house for three days and she wouldn't have known it. She lives around the corner and let all my front stoop containers of mums die while I was in Ireland. That's petty, of course, but doesn't bode well for the future. The "feel" of the relationship isn't right, as I've said a time or two. It's embarrassing to say I've let myself be exploited while kind of run down and at a low ebb because of losing Larry...I don't exactly want to say that she took full advantage...but I just was at a vulnerable point, and not really being as assertive as I should have been. Not anymore, though. I think I'm getting some of my mojo back.
Elizabeth, Based on what you have posted about redecorating the house and joining the writers' group, I'm not at all surprised that Ohio is feeling more like home.
Right, Myrtle. This subject has really progressed beyond the Alzheimer spouse/widow issue...it's kind of a universal grandparent issue, I suppose. But I never would have moved to Ohio in the first place if it hadn't been for the Alzheimers issues becoming so dire.
It is just amazing how deeply Alzheimers affects your life, even long after (16 months now) the disease is "gone." The pebble in the pond effect. The nuclear bomb strikes (i.e. your spouse dies), and you suffer the radiation poisoning effects for a long time. Maybe forever. Yikes.
I have a friend who is good at dealing with this kind of situation. She says to requests, "I'm sorry I'm just not up to it." She never explains, but when pressured, repeats calmly that she is "just not up to it."
I don't think that makes you a bad grandma at all. I think if you offer to help out if one is sick or if school is cancelled at the last minute then you have been a tremendous help to your daughter. Then any other time you spend with them could be when YOU choose to and you would enjoy it so much more. You need the freedom to travel and just do what YOU want to do for a change.
Elizabeth, For what it is worth, I am reading a good book by Brene Brown called Rising Strong. She talks a lot about boundaries, which is something I have always had trouble with, although I am getting better. I quote from the book, "the trick to stay out of resentment is maintaining better boundaries, blaming less and holding myself accountable for what I need and want." My kids have not asked me to babysit that often, only in emergencies. But if they did, I think I am at the point where I could decide what I need and want and refrain from saying yes when I really mean no. Setting boundaries with loved ones takes practice and it does get easier but I still struggle with it. So much of my personal identity was tied up with care taking. It may be that setting firm boundaries may be the answer rather than moving. Moving is something that occupies us and I have thought about it myself and like travel it takes the focus off having to face ourselves and dealing with personal growth. I have not made any big decisions yet. Right now It is still hard to make decisions. I go through all these mental gymnastics back and forth. It is exhausting so I tell myself it is not time to make any decisions. Although I am getting better since his passing I realize I am not "there" yet. I am realizing that i probably will never be the way I was--a person who could juggle multiple balls in the air and one who never had trouble taking risks or making decisions. You sound like you are making great progress post Alzheimer's.
I can't cope with the way things are. I have to get back up on my feet and even though nobody's done anything wrong and there's no one to blame, that's just not happening with the way things are.
I know how important my babysitting was and I've been glad to help but I just can't do it any more. I'm sorry.
You know what? I could use some real help too. Your mother has gone through a seriously hard time and while you deserve a life, I do too.
I wish that I could wave a magic wand but I can't. Going through all that took too much out of me and I'm getting older. I'm a senior citizen. I can't do what I used to be able to.
I want to be there for you just as I know you want to be there for me. I just don't have the energy any more and it's taken me some time to realize I have to face that.
I can still (your terms and conditions here) but I'm afraid that's all I can do right now in my life.
.......
I wonder how a scene like that would be written? For all we know more of the play hinges on that scene than a casual observer might suspect. It's a hard scene to write and a harder scene to act out.
I would never write it mentioning my own life, my own needs, the grandchildren, family, or any other topic like my own space that could easily be dragged in. I can't do it anymore because I'm getting old.
Always back to there and never anywhere else. I just can't do it anymore. That's likely to take a couple of rounds. But it is the tenable position on the strategic map. And it is true. I can't do this anymore like this (and have the cycles I need to grow into a life). The words in the brackets are silent.
.....
Call me wrong fellow traveller, but that's what I see.
Conflict is an art, learned in battles. Strategy is an art, learned in study.
If the reason is that you can't anymore there is no tenable comeback. Every other reason is full of argument and the more reasons the more there is to argue through.
I can't do this anymore. I'm sorry.
.......
And as an acting wannabe, I would never memorize any of the lines. I would live the part which happens to be the truth.
You could also drop hints with the grandchildren that it takes a lot of energy to keep up with them because you're getting older. It's not their fault, just part of life. That lays the foundation for understanding for them.
I beg your pardon for being so outspoken. I think it would be disgraceful of me to believe what I do about this and be silent.
(disclaimer - no actual persons were portrayed in this post, any resemblance is purely coincidental and almost completely unintentional)
Thanks, Wolf. You expressed it so well. I've said to DD that the children are just getting to be too much for me, which is the simple truth--related more to their acting out following the divorce than to the fact that I'm getting older. We both agreed last night after yet more misbehavior from the eight and the six-year-old that they probably should just go to their after school program and that DD will pick them up on her way home from work. I will still pick up the five-year-old three days a week at 4pm. He is completing his last year of pre-K, and not on the same schedule as the older two. And I'll continue to cook suppers from the pooled dinner money, although I may do something like leave casseroles in her refrigerator rather than actually trying to eat with them at suppertime. The short story is that they don't sit down to the table for the meal...there has never been any expectation from either parent that the kids sit at the table--they just run around --and for me, I'd rather eat by myself with a book at home. It's just getting too chaotic and lonely. Larry and I didn't live like that, and I'm finding that, alone or not, I sit down to my table and eat the meal at mealtime.
I don't mean to hijack the thread with my own personal family issues. But here's the thing--I would never, ever, in a million years have got myself into this situation without the Alzheimers Black Hole destroying my and Larry's life. I hate Alzheimers. It is worse than the Black Plague. At least with the plague, you died quick. (And still sometimes do--it isn't totally eradicated.)
I guess I didn't exactly do anything wrong--just turned to family out of desperation when everything was going to Hades in a handbasket--and the family of today is not the same as the family I was raised in. Culture and values are very different, as I've said a time or two. What's done is done, and at least I know...so I can get my shields up and be much more protective of myself in the years to come. It would have haunted me forever if I hadn't at least tried to be the same grandma that both my grandmothers were to me and my brothers. And of course in retrospect I wish I hadn't bought DD a five-bedroom, three-bath house cash on the barrelhead. Oh well, at least it's all in the family--I didn't give it away to the government or to some scammer from Nigeria.
Woulda, coulda, shoulda . . . We all experience it. And we are likely to forget that luck has a lot to do with it, beginning with the bad luck that our spouse got Alzheimer's. What I feel especially bad about is that on top of your sorrow about Larry's sickness and death, you had to experience the pain of your daughter's disrespect and ingratitude. IMO, you deserve to be respected and treated as an honored elder, not taken advantage of as a source of labor. But I am very confident you will find the right way out of this, wherever you choose to live.
And I think your comments are perfectly fitting on this thread. Isn't what it is here for - to express the circumstances people find themselves in after their spouses have died?
Thanks, Myrtle, you always come up with great common sense and wise counsel.
Yeah, instead of "Widows/Widowers," we should call this thread, "Annals of Those Who Are Now Toast." Hahahahahahahahahaha
I totally could not have made it through these experiences without this group. Thanks again to all, and especially to Joan for starting this website. I know she's missing in action at the moment, but I'm sending lots of hugs and support over to her house per ESP.
In case you had any doubts, Elizabeth, you can see that everyone wants you to have your life back and to be happy doing what YOU want to do with it. As Myrtle said, you will find the right way. This is a big bump in the road on your way to better days. You deserve this, and Larry would certainly want you to be happy, so don't falter now.
It was one of those days where it feels like I'm not human so much as a sand pile gradually blowing away, already hardly recognizable with as much chance of feeling an epiphany or a revelation as any sand would.
And all day long it was gloomy and overcast until I looked out at the western sky thinking exactly the thought above and how I didn't want to get up and make dinner and just then -and I swear this is exact - a bright red band broke through and opened into a bright red and orange crack that spread halfway across the sky. It didn't last ten minutes but it bathed me in an orange glow in a way I could never have orchestrated. I don't believe in omens unless it's someone telling me I'm rich as they hand me the money. But it was just what I needed then.
Getting 'better' in the afterwards doesn't mean getting over it and moving on. It means it's somewhat less creepy, somewhat less powerful, and there's more me in more days. There's nothing linear to that and it's not replacement theory. Good moments have not made bad moments go away. But it begins confusing the abuse a shivering animal feels and it adds a moment of light to a dark landscape and it adds a reason to hope that if you have one good moment you can find another good moment.
There are many types of moments that aren't bad. Things I get accustomed to and things I take ownership of and things I change (and even change back) also influence how I think and feel. I don't see empty chairs here anymore, and I do feel like I'm entitled to this time; but, I'm also aware that as I've been getting further away from that long nightmare, it's as though my returning senses see what actually happened more clearly and differently. Some things about what happened hurt more sharply now in more nuanced ways than when I was stunned and staggered by the overload. The nuances of my loneliness for example.
I don't just remember those years now, I empathize and see perspective in ways that are new even though the events are years old. But I've also learned things about how this works, and by that how I have power.
I've had a memory that stuck with me all my life. I was eight or so brushing my teeth with the bathroom door open and spit the toothpaste goop into the sink when I was done. I was reaching for the water to rinse my mouth when I heard my great-aunt ask me in a very offended voice if I had just spit into the sink. I denyed it I remember, but she was so outraged that moment has stuck with me my whole life. (what was I supposed to do? swallow it?)
She was my aunt Gretel. Her parents came over in the 1880`s and she was still living in them. I have no idea what she had in mind but I didn`t get into any trouble. It has stuck with me my whole life.
As part of looking around in my afterwards, when I came across that memory yet again I held on to it this time and asked questions. She was obviously a neandertal throwback and I had grafted her problems onto my view of myself. I, hereafter known as the idiot, had carried that turd for over fifty years without ever bothering to do any housecleaning. So I told the memory to take a hike and disappear. It did because that was half a year ago.
I did that with screaming lady too. She was our lifelong couple friend who ran screaming out of our house that she didn`t want to hear about alzheimers. She never did own up to that. I got rid of a lot of garbage like my nephew and other things, but this was dug in. I found myself coming back to it the way I did with other hurts I couldn't stop.
A few months ago I remembered she had also had Dianne and I over for thanksgiving dinner where her son had brought his friend for the first time. Dianne stuck both palms on the turkey on the table feeling it. I intervened and Kathy (the same lady) told me to leave her alone and that if Dianne wanted to touch her turkey she could.
I welded those together. I attached screaming lady to turkey lady and it all went away.
Learn, people say. Learn things. Learn in school. Learn in life. And do you know how you do that? You change how you think about that thing. That's what learning means. Change how you think about something either from a blank or from a previous version.
Life does not require us to tap the powers we have. Find out more about yourself, come to understand and accept yourself, come to know some of your real strengths and weaknesses, be able to name a dozen things you like or enjoy because you've thought about it and know, discover a talent - not so much. Society is not at that stage because everyone spends much of their life trying to earn enough money to live on.
This is that time like it or not where we discover some of those things life didn't prepare us for. And what you have going for you is the same as the kid leaving home to strike out on their own. Nothing. Just like always when we start.
"When we discover some of those things life didn't prepare us for." Yes indeed. Life after AD is really the uncharted territory. I am constantly working on re-building and figuring things out. I would not have expected in a million years that it would be this lonely, scary, and hard. Not complaining or whining...just saying.
That sunset last night was incredible, Wolf. I happened to be at DD's kitchen sink washing dishes...the sink is under a western window. I actually called DD and the grands over to the window to look at the colors--it was awe-inspiring.
Hi Elizabeth, I wasn't going to put these up but helping each other to find a path is the goal - and at that hyphen I heard the blue jays calling and I threw out some peanuts and the cardinal came and took one just like the blue jays. That doesn't make sense yet - but it will in a few minutes.
I live in a 1960 sidesplit about 1600 square feet, three bedroom suburban home. Nothing unusual. But I don't. I have a studio. It's littered in canvases. I have a five by six US army work table right in front of the big window. When I look up from my computer, I'm looking out that window. Today for the first time, the resident Cardinal came to the branch, I threw the peanut, he dove and got it and flew away. He's been watching the many blue jays closely and I saw him come down and take one when I threw multiples out - but this is the first time that he knew what to do to get his own peanut. Birds are dinosaurs and even they learn.
My bedroom is not a bedroom. It is an attic in Rivendale and there is magic about it. I sometimes sleep on the hardwood floor. It relaxes my bones. But in my bed everything is about comfort and what I call snuggiliness. If I can't snuggle into my bed and get cozy and relaxed then I would just as soon live in a cave. I keep the house at 69 and I sleep in my birthday suit. When I get into those sheets it's cool. But I have a thin flannel blanket and a light thermal blanket plus a loosely woven throw that's just big enough to cover me with room for Bandit to sleep on it beside me. She likes rolling around and coming up staring over my magazine at night.
It took me a long time to get it right. I never sweat, am never too hot, the throw is well short of my feet which get too warm fast, and tucks right up to my chin. I use two pillows where I went through every combination of pillows we own including two I found that were still wrapped in plastic. I've cycled out the sheets I don't like as much for the spare bedroom and I only use the ones I like the most.
I have potpourri out on Dianne's bureau beside the bed. I stripped the rugs off and polished up the hardwood. I brought in the two white wicker chairs with carribean bright pillows and put one on each side of the room.
I'm just getting started. I really am learning to care about cleaning and really am opening my heart to it's lifelong committment (we had cleaning ladies for over 30 years). I'm learning to care and take pride in my own way. The inside of my microwave, my toaster, the floor behind the fridge and stove, the dustbunnies that used to roam the kitchen, my silverware tray, the cupboards, the showers, the toilets, the laundry - it's all cleaned. I have a lot still to do but I changed and then so did it.
My future has never been my past and my past has never helped all that much with my future. Childhood didn't prepare me for teenage years which didn't prepare me for marriage which didn't prepare anyone for parenthood in the same way that degrees don't prepare you for jobs and training doesn't prepare you for war. You live the thing. There is no other way.
I haven't moved into anything new because I don't believe it. I'm so busy changing I couldn't possibly predict exactly what I'll feel in a year or two but I know with certainty that it will be materially different from what I feel today. That is true looking backwards and is very likely to be true looking forwards.
I'm a collector now. I collect things I like. All kinds of things without any limit. This involves throwing out trash - such as ideas that other people are shallow. They're not, but it's ok for me to feel like that a while longer because I'm busy with a mass of garbage of my own that I have to get through.
I told a nephew a few weeks ago I'd found the car I want. The only problem is that it's not available in North America. I would have to move to Strasbourg which is France but it's German speaking and about 40km from the autobahn where there are no speed limits. If your car can go 250kph/160mph, then be my guest. Also near there is a large racetrack open to the public. He offered to visit. I qualify for a dual citizenship which means I can live most anywhere in europe as a 'native'. I gave up on Paris as too 19th century. But just like the lodge, and the beachouse, and the villa, I'm collecting ideas I like.
And just like everywhere else on this rock, there's no brochure. That's the first job. You have to make your own brochure. Mine has an unusual title:
Attention WOLF! You are in a deep hole on a miserable planet. You got old while you were away. You have two choices. Crawl out of this hole and go somewhere else or don't.
(I'm still working on that title). Here's the full text of the brochure:
It's been tough. Can I enjoy life again? Do I want to? Then what am I doing?
And finally, a small game. Find a collection of things that you truly value and do have or can have. Try and feel and appreciate each one and acknowledge them to be genuine and meaningful to you. The reason is not some affirmation gibberish. The reason is you're trying to learn these things exist around you when they are genuine to you and you open to them. You're learning how to feel and invest, choosing first things that are rock solid for you.
If you play this game truly to yourself then you may have opened your feelings to things you treasure now and in the future and that is a lighthouse that survives storms and is a beacon in the dark.
I love ice cream. I love animals. I love basketball. I love expressing. I love humor. I love chinese food. I love the sun. I love this rock believe it or not. I love movies. I love my life although this isn't my favourite year.
It reminds me of the Groucho Marx joke as he's leaving the boring party: "I've had a really great time. But this wasn't it."
Learning means to change how we think. People who say life isn't what we think are wrong. Life is exactly what we think. Change that and you change your life. The world is littered with stories that prove that over and over and over.
I just read these posts again this morning. Great stuff. I'm wondering if Bandit is a dog or a cat.
When my girls were small, we invented our own word that translated into cosiness, warmth, comfort, security, etc. We called it being "wubby." To this day a down comforter, a fleecy throw, a new woolen hat...is "wubby." Just like Wolf increased the "snuggllness" of his bed, I increased the "wubbiness" of mine. And I'm sitting here waiting for my heat to come up wearing my down coat at the table. It is 'wubby." I think having wubbiness or snuggliness helps in the recovery from AD caregiving.
(It's been murder typing the above non-words, as the autocorrect keeps trying to change them to something else.)
Here in my world a wubby is a pacifier for my grands. They only get them when they are sleeping now that they are a little older. Same purpose tho...comfort, security etc.
I hear that and one concern I have is that the baby goes out with the bathwater. The word is completely unimportant where I used snuggiliness which is going to put some people off but does capture that you have to come to the thing so you can enjoy it.
I went to Toronto yesterday to watch a D-league basketball game with a friend. I'm getting better at this. It's still a military operation because frankly, I still struggle with it all; but it is getting easier and is changing.
I've learned that not only am I wary of others hurting me which I knew, but that my basic outlook is that things will go wrong. That I did not know. I only think of things that will go wrong. I don't think of things that will go right. I don't think of it in a balanced way.
My entire outlook has been reviewing things that can go wrong. Like too much traffic and I'll be late or too little traffic and I'll be too early (I was). I've learned to solve the things I can which seem to prey on my mind like getting gas the day before and making sure I have enough cash in my wallet and spending time making sure I understand how to get there and what options I have in route.
It's like constant self management to make these things happen which is a pain because it's hard enough already. It's getting better though because I accept (mostly) that I have to manage myself even though I'm sick to death of that. I have to remind myself that my friend who comes from the other side of the city can also get caught in traffic because the mindset is fixation on what can go wrong with me - not him where I would the one inconvenienced. That's all it is, isn't it? One of us might be a bit late.
I was 50 minutes early. Part of that was it was unsual how the traffic flowed. Part of that was that I overcompensated my overcompensation. But I want to learn and I absolutely (not to say desperately) need to learn how to settle down much more.
So when I was that early I decided not to stop at a coffee shop and instead just look around in the car and relax. I watched the people filling the parking lot and going in. I watched the school buses pull up letting gaggles of kids out. I watched the teachers and their different styles of herding and keeping control in chaos. I watched the bored bus drivers get in each others way. We watched most of the game and then went to a burger joint we used to go to 20 years ago. We talked for a while and when I drove home I felt the reward that I say 'yes' now when I'm half interested and even though it's all still weird, it's also more ordinary than I've been in a long time. The glacier is gradually melting and bits are falling away. It's a big glacier though.
When I got back I discovered that screaming/turkey lady above had been to a wedding. She lives in the downstairs apartment in the house her daughter owns and they told her she had an hour to get ready to come along to the ceremony. They'd been together 17 years and suddenly wanted to do it right away. Nice pictures.
I also had a message that my neighbour wanted me to come over. He's the ninety year old that used to plow my driveway. They're going to their place in Florida and want me to baby sit the house for a month. Yup.
I had the usual mood swings. But coming back to Kitchener and passing the little ski hill, I felt like this is my city now and zipping around the corner on the ice into my driveway, I felt like this is my home, and walking into the house seeing the cats come looking for their late lunch - well, it's getting less hard gradually and the big empty is going to take some time to fill but I'm getting somewhere. So lets go through the mood swings. My poor freaking self has been through so much grief and pain I am so glad I'm so unusual I can take myself into my own bosom.
Or, if you prefer, cut myself some slack and genuinely give myself a break. Go ahead. Make your day.
All of this, all of it, occurs within the cloud of down that still permeates my reality. As it should. I loved her. I loved my life. I loved my friends and what we all did. I loved us. All of that is gone and I respect that the pain is proving to be just as real. I still want a good life and I know I now have to work for that. Not what I do. I can do most anything. How I feel. I believe that how we feel and how we think are completely inter-related.
Hmmmm. I hate to keep saying that Wolf keeps hitting the nail on the head, but in terms of the W/W post-AD journey, I do find his experiences reflect what I am going through, too. Any outing is a military operation, because you have to take care of every little detail yourself, and I find that it's best to do it the day before. Gas in the car? Yeah.Snow brushes, a clean rag, extra eyeglasses in the car? Yeah. Cash from the ATM? Yeah. Directions obtained from Mapquest and checked against real map, and are they in the car? Yeah. (There's a GPS on my phone, and I know it works fine, but I don't like it.) Clothes lined up, purse organized, yeah, yeah, yeah.
Like so many here, I did love my old life, and one thing that I liked about it was it seemed so seamless. We both liked to live the same way, we had our routines, "we" did things "our" way. I miss having that special someone with me in my inside orbit. Now there is no one. I'm not special to anybody like I was to Larry. Whine, whine, whine. But it is a loneliness like no other. I always in the past thought loneliness was kind of self-indulgent, like if you just pulled up your socks and got on with things you could defeat it. Boy, is that not true. I am one who is used to a whole network of husband, friends, relatives, and co-workers--for years I've had a lot of people around and nice groups of friends--but here, I swear to God I have never been so isolated in my life.
A couple updates. I did something I had not done before, but thought was only fair, and sat down with the three grandchildren and discussed Grandma moving back to New York. Oh my goodness. The short story is that they unequivocally want me to stay here. Moving is not an option. Sigh. So what can I do? I have to stay and do the Grandma thing...really don't think I can do anything else. There's no way I can nail those kids to the wall. I will set big boundaries and insist on my rules at my house...and if they can't get with the program they can spend more time in after school care. But I'll be generally available, for all the usual grandmotherly yang. The situation reminds me a lot of when my own very special and much-loved grandmother wanted to move back to England in her retirement years (she was born there)...but she didn't...because of us. She must have been so conflicted and torn...I am really only starting to understand it now.
So I did something new, and got myself a small dog. I do like the name "Bandit" for a male, and the kids also voted for "Bandit", so "Bandit" he is. (Honestly we weren't copying Wolf.) It's been a long time since I've had a dog, because going out to work everyday I wouldn't have been able to really enjoy it and spend the time training it and whatnot. But I was in 4-H Dog Club for years as a kid, and we always had dogs at home. So we'll see how it goes. This one looks more like a powderpuff than a dog, and at 3 months old there are all the puppy issues of course. At least I don't need a manure fork to clean up after him like I did when I had horses. But anyway, I wanted a young animal that I could train and that I hope will live a long dog's life. We shall see, but so far so good. He slept better last night than Larry ever did. (Gave him the kids fleecy throw to sleep on--I think it made all the difference.)
Hi Elizabeth, Congratulations on making a decision about your future home. The part of Ohio you live in sounds lovely and you must feel good about the changes you've made to your house. Bandit sound cute. What kind of dog is he?
"I'm not special to anybody like I was to Larry." That will not be true for long with Bandit in your life now.
That's interesting about your grandmother. I think when we're in tune with the cycle of things more that we get a richer appreciation. So many of the things in life are like wheels within wheels where one thing affects another. Perhaps your grandmother staying made your life richer and perhaps your grandmother going back is a journey she never took and always dreamed about. I would like at times to be able to go back and ask a question and hear the story; but, I'm in this cycle where they're not here and I can't get those answers anymore.
I hope that Bandit works out and that you both end up being lucky you have each other.
Bandit is a Yorkipoo, mostly black with a little white on his chest. Today was his first day in the park--he is figuring out that "outside" is great--wonderful dirt, leaves, plant parts, and sticks...and so much to stop and sniff at. He is sociable, doesn't mind being handled, enjoys playing with the kids. He's catching on to house training fairly quickly, and after the second time in the car, learned to be content in his carrier. First vet visit (routine) is Monday. Cross your fingers--I'm not sentimental about animals, and I realize it's not a perfect world. But so far so good. He does keep me hopping.
I have made up my mind to keep looking forwards--not backwards--and to be as happy and content as possible under the circumstances of not having Larry. I wear my wedding rings as a memorium, and that's what I'm comfortable with--it doesn't mean I'm living in the past or clinging to it. And as I said to Colorado DD tonight on the phone, I'm setting good boundaries--getting my shields up--in terms of local DD (who has her pros and cons, as you all know...but I can stand up to her), and I'm just going to live my own life and butt anybody out of my house who disturbs my karma or crosses my lines. I've made a full commitment to living here in the Heartland as a grandma for the foreseeable future anyway, and just happily being one more New York State retiree who doesn't live in New York , but who is always tooling up there to visit in the good weather. lol
Dear Elizabeth, I feel so sad that the dreams you had have to be revised. I dreamed along with you of your writing your novel, of the freedom to travel, of the freedom to express yourself fully, and to hope for a different future which would include companionship and love. You paid your dues. I fully understand, also, that sometimes we have to made decisions (especially where grandchildren are concerned) that we must sacrifice for. I’m sure you showered them with love, and I only hope that they will remember and reciprocate. You are a ‘safe place’ of them, and a safe harbour when things go wrong. I only hope that your daughter understands what you have given up, and appreciates and is there for you. In my opinion, if you can keep to your boundaries you can make it. Sounds like you will have fun with Bandit. God bless!