And much love back to you Coco. It was so good of you to check in as you and Dado are both still in our hearts. Just keep on going at your own pace and one day the grief may be somewhat easier to bear.
At 4:30 p.m. two years ago today Frank found peace. Two years ---- and some days I still can't find me. I have great projects in my head but with no one to share with they never seem to get started. Grief is hard. I'll never get over the loss of my best friend and companion of 60 years but I've become accustomed to being alone and it is somewhat easier as time passes. This is also the birthday of our second son. I took both my sons to lunch. We talked and laughed and enjoyed our meal and time together. Busy schedules for them so don't get together very often. My birthday boy was very close to his dad and I know misses him greatly. I've told him it was such a happy day the day he was born and we would just remember that. Frank would not have it any other way I know.
I just threw out the last two mini-carnations that I've been nursing along from the last of the floral arrangements. The "greenery" was brown, and the white carnations were starting to discolor. I gave them each a kiss and threw them in the wastebasket and put the glass they were in into the sink to soak. Just another good-bye. But you know, an old friend wrote on her sympathy card to me that, "Your love for each other will get you through this." And I think that's true. Or will be true eventually. I think of how DH had to keep moving forward when his first wife was killed in a car accident, and when his only child--their son--died suddenly at age 36 from a cardiac arrhythmia. I remember saying to him in the early days of our relationship, "I give you a lot of credit for staying sane." He had to re-invent himself and keep going, and if he could do it--I can do it. Somehow. I have a couple rules for myself: I go to bed at 11-ish and get up at 7-ish. I make myself be showered and dressed with hair blown dry by 9 am, whether I feel like it or not, and I put earrings on. I can't get very interested in make-up, manis, pedis, getting a better haircut, or wearing my usual jewelry or nice outfits. But I'm presentable and can answer the door or jump in the car for grocery shopping and errands. So the beat goes on. I am determined to get back to church, if nothing else. I just don't feel like being with people. I like to stay home, read, play my harp and piano, walk in the park, and just think about DH. I am eating right and exercising regularly--absolutely no aches and pains any more--they are seriously gone. So that is a good thing. Now I'm just crossing my fingers that all this extra weight will gradually melt off. DH would want me to go to church, and he would want me to look nice. So I will try…it is hard to care too much…I am sort of defined by missing him…and missing him…and missing him. But I am trying.
elizabeth, It sounds like you are trying and doing a wonderful job moving forward with your life. It is great to hear that all of your physical aches and pains are gone. You are a very disciplined lady to have a daily game plan and are sticking to it. I understand your enjoying the peace and quiet of being alone. I always dread going to the NH to visit and seeing all the suffering. Wearing better outfits and your usual jewelry are not important if you are comfortable the way you are. I am also happy for you that you are getting to go through this at your own pace. I will be rooting for you to be able to lose those extra pounds. That is a task that is much easier said than done. Thanks for the inspiration and calmness you send my way in your posts. A great big ((Hug)) for you.
Elizabeth, reading your daily routine is really an inspiration to me. I wish I could be only half as disciplined as you. Your words make me want to do a better job. Thank you for sharing. Keep up the good work.
Elizabeth - I admire your spunk!! Grief is hard there is no getting around that fact. It seems you have a plan and are working it and I admire you for that. There are still many days I just don't care -- don't care about anything --- but life just seems to go on anyway. Wish you were near I'd fix a cup a something for us and we'd solve all the world problems. Hang in there!! hugs to you.
Well, I cried myself to sleep last night, so I guess my spunkiness, if it exists at all, comes and goes. When the church bereavement person came over before the funeral, he brought a folder with the suggested songs and readings in it for me to pick from, but there was also some material on grief and bereavement, which I could not bear to look at until last night. I read the material in bed--all good stuff--but ended up in tears. Sigh. I'm honestly not much of a crier…but I sure am now. I have to be careful, because it can hit me quite unexpectedly. It's one reason I don't want to be out and about with people very much--it doesn't take much to get me all choked up and for the tears to start. It is so visceral--not anything I have much control over.
Elizabeth, you sound just like I did after my DH passed in April. I didn't, and still don't, want to be around people. I have a few core people, like my sister, my daughter and two or three girlfriends that I see. I am an outgoing person by nature but I understand how one minute you are fine and the next you are not. It takes time. I'm doing better and am doing and saying the same as you. I know our husbands would want us to get on with life. As hard and as simple as it sounds, one foot in front of the other, one day at a time. Sending good wishes to you. Keep eating right and exercising and those pounds will melt off! :)
It is 14 months for me today...It matters not when in a month the dates of his admission to hospital and the day of death fall ( he went in on a Friday at 2 AM and died on the Sunday at 7 AM and ALZ or not, it was not expected, it was from a complication from something else) and then again every weekend...the cloud comes over. Last night I was at a program here in town put on by the Follies...a local group of dancers and singers..lots of fun really and enjoyed the whole program. But near the end of the show, one man was introduced who had been a member for the whole time this group has been together..some 11 years. ( the goal of the shows is to raise money for Parkinson's Disease research) He was introduced and he is a wonderful singer...he sang " If Ever I Would Leave You" it wouldn't be in summer etc...with " no never would I leave you, at all" and then the tears started....as I said to myself.." but you did". Yeah I realize in spirit he is with me and he is big time! But I am sitting among an audience full of couples and with my best friends..who, thank god have always stayed close..They are my blessing...we do lots together but they are together and I am alone.
Yes, Elizabeth, it comes and goes this thing called recovery and it will for a long time to come.
Ouch! Oh, Mimi, how excruciating. At least you got through it--I think I would have been out the door and waiting in the car until the rest of the show was over.
Just wanted to share a nice moment: I had a basement contractor out here this morning (from a company we used last year) to figure out why there is water in a crawlspace…short story is that there is a bit more work to be done on the house. But anyway, I was talking about DH and showed him a couple photos--the contractor had also lived in NY, and we were comparing notes about NY versus the Midwest--, just chatting a bit--he was probably 30 years or so younger than I--just a kid, really--and I mentioned that DD is pushing me to get out more, but that I hadn't made friends in the Heartland yet, due to the situation with DH. He said, "Well, I'll be your friend, " and gave me a nice pat on the shoulder. So sweet--and it shows how isolated I have become that such a simple, ordinary "nothing" kind of a thing has given me a good feeling all day.
I will be going back to NY to see friends and just do a couple things in the Mid-Hudson valley and Manhattan the end of this month. Then for Thanksgiving I will be staying with my niece in Vermont, where one of my brothers and his wife will be there, too, and her fiancé whom I have not met yet. Her two kids (she's a widow--long, tragic story) and his two kids will be there too, plus I think my other niece from Vermont. So a couple of long drives for me, and I'll have to keep a good eye on the weather, but I cannot hole up here in the house with DH's pictures forever.
I can see more and more that DD has just been using me and using the situation with DH to her own advantage--DH had only been gone two weeks when DD filed for divorce against s-i-l, when she had indicated to me previously that they were staying together. You may recall that s-i-l basically functioned as DH's evening aide, so I was devastated to learn that DD was apparently just waiting for DH's death to pull something like this. I never would have bought her a house if I had known this would happen. Now I have to be careful to get on with my own life and not just become the indentured servant to her and the three grands--I love them dearly but certainly don't intend to be the one who makes it possible for her to get divorced because I am always "on deck" and available to help. No way. I made it clear to all that I will stay here one year and can continue with my after school babysitting, but will not be here all the time--will be doing some traveling while making my decision whether to stay or sell up and move somewhere else. I have to say that her getting divorced makes it a lot more likely that I will leave--no way am I getting caught up in this whole situation. It is so unfair to me--this right on top of the loss of DH.
elizabeth - if you want to keep in touch with your SIL, then do it. After my oldest sister divorce after 16 years of marriage, we all still considered her ex as part of the family. We kept in touch with him. I could not imagine him not being part of our family. Can't say the same for some other 'exes' in my family though.
Thanks, Charlotte. I intend to keep in touch with s-i-l, but I'm more worried about being used by DD. In any case, I'm not making any snap decisions, as I feel that I'm extremely vulnerable right now, and need to keep my boundaries firm. Some friends and family members (who were not supportive of me and DH during the Alzheimers journey) are being very kind to me now. Well…..OK. I guess. Right now I need all the help I can get, but I will not forget back in the recesses of my mind that they were not there for me when DH started to slide downhill. I've seen enough--as we all have on this forum--to know that I need to be very careful to safeguard and take care of myself…as no one is going to do it for me. Certainly not DD. Sheesh. I thought we were all building something as a family and would all move forward together after DH died. Yeah, right.
Thanks, Myrtle. You have summarized it perfectly. I would never have believed that internet "strangers" could be so helpful or so caring. You and so many of the others are not internet "strangers", but rather internet friends. God bless you all, and I wish I could have you all over to my house for a big get-together.
This third month today I honor my darling with thinking of him today, as much as I can with happy thoughts. I finally had a dream of him, he was still his good healthy self with his flowered head wrap, his yard clothes for making rock walls, and his jeans having that little bit of grease smell from his tools. I was under the house trying to fix the water pump, and there was a wire that I was scared to loosen. I was all alone and missing his help. Then, out of the blue, there he was under the house with me, and said, "No worry honey, I will do it for you" He then pulled the wire off, and I woke up. I was actually half awake when I had that dream, and I truly wonder if he really came to me.
The funny thing was, I finally had that kind dream after a day of feeling almost happy. It seems the deep grief crying maybe, keeps it at bay.
elizabeth I want to tell you how much I admire you. You just lost your guy and yet you come on here with an open heart and positive words. I know it means alot to everyone including me. I hope soon I will be able to offer more to everyone here, for me I am trying to process what happened over that 3 and a half years, so quickly, so sad, so tragic to lose my Dado. I can still cry at the mention of his name, and it still cuts like a knife. But now, when I have easier days, though I know I said I would never want to feel this pain ever again, when I don't , I feel like I am letting him go and THAT is too hard.
I know this is all normal. Darn I wish it was not a part of life, any my heart cries for God to let me know there is still hope.
Coco, perhaps he did come to you. After I lost my father to suicide I had several vivid dreams of him visiting me. Always he was singing the same song...Ooh Child (things are going to get easier) And always I woke to him brushing the tears from my cheek... I could still smell him, I could almost feel his touch.. and really, I did not care if was real, a mind gone mad from grief or simply a dream. It brought me comfort when I desperately needed it. I hope seeing Dado 'whole' brought you a measure of comfort my friend. Much love ((hugs))
Today is the 3 month mark for me. I have my moments like when I am in bed at night, or when I'm driving , my head goes back to 3 months ago. Mostly, though, I think I am nearly back to normal. Partly I think it's because my DD lives here so I keep to a normal schedule, getting up and going to Curves (exercise) early. I always have dinner ready soon after she gets home and go to bed at my normal time.
I have booked 2 cruises, one for Feb 1st with my sister out of Ft Lauderdale, and the second is Alaska next June with my 2 daughters. That gives me something to look forward to. Ron and I loved cruising, We went on 15 cruises between the time he retired in 1993 and 2008. We had a 35 day cruise booked the next year but had to cancel it because he couldn't handle it. It may seem strange to not be with him, but I did some cruises with the daughters without him, so it should be OK.
Good for you, Mary. I think there is something therapeutic about water…looking out onto all that ocean (both times) will be life-enhancing. I know that when I walk in the park every day, I always go to the bridge over the creek and watch the water flowing for a while before I walk back. There's something soul-nourishing about it…I can't explain why, but I feel it. You are wise to build a normal, healthy structure around yourself: getting up and going to the gym, eating a good dinner, going to bed at a reasonable hour…it can only help you. After all the chaos of Alzheimers care, I think a somewhat scheduled, calm life is more than pleasant. Things that most people would take for granted, (a night's sleep, an exercise session) seem like spa luxuries to an Alzheimers-surviving spouse. (Yes, I'm tap-dancing around the word "widow." Hate that word.)
I've never posted here as a widow and I'm not now. But if I don't post this then I will never have said anything about my life and my ideas about alzheimers afterwards. I've met so many great people here including Carosi where we wrote extensively to each other daily for over a year. Hope you're well Carol. I was blessed with help from many here over the years. There were years where I needed this board so much more than it ever needed me. I tried to give back. I knew what I was doing was different after the nursing home came into our lives three years ago and it's clear to me for some time now that I really should be moving on.
What I went through and what I learned from it still is astounding to me; but, I've talked about it every way I can think of and I have increasingly seen there is little to add further here where for some time I've already known I sound like harping and am aware that hearing how I found my way out can actually be hurtful at the wrong times.
I've already said goodbye to her. Her euology is here buried in the posts and for as long as I live I will know that. So long kid. And hello kid because you're coming with me where my other half can never be expunged in any regard and she will get no rest once she has passed because I not only welcome her - I own almost all of her memories now and I like playing with them.
She gave guided tours through our house for a while to unseen visitors. She lectured the person in the mirror about how things were and weren't. We never said goodbye. We never will. I've never worn a wedding ring and I never will. We never had children and I never will. But we were friends all the way through and that will remain true because I am on watch over her.
I will put into the christmas lodge if it seems to be helping people get through christmas and if I think of anything helpful I will post it; but, just like the disease is a long goodbye, so is this. I will not have just faded away though. I said thanks and goodbye right here.
My fullest, deepest wishes that every single one of us finds a path for ourselves. No need to reply. I'm not going anywhere. I'm fading away. Seems to be the way it is with Alzheimer's. Love you all even though you're strangers because I can promise you one thing with certainty - you're not stranger than me.
Well, I'm going to miss you. I find that when I come up against something difficult or interesting, I say to myself, I wonder what Wolf would say abut this. I don't get an answer, but I am comforted by the thought that if I asked you, I would get your full attention and help.
Wolf I hope you see this. There does, indeed, come a time when we must continue our journey in a different manner. I have met some wonderful people-but we have now gone our separate ways. It is a way of healing. That being said-I will forever remain in touch with some very special people I have met on this wonderful site.
Wolf, I will miss you and your unique way of looking at life and expressing your and Dianne's Alzheimer journey. So many members have moved on, I truly feel a great sense of loss. Hugs to you, thanks for the memories!
LFL, don't feel like that. All things enrich our lives once we accept them. In some ways Alzheimer's was always Dianne's journey and I shared it with her - but it is not my life. Besides I will be at the lodge and as I said, I expect to fade away not burn out.
Don't forget that in my case I had 40 years with my best friend and lover. It was always my opinion that if I couldn't come around to seeing that as the truth, then I was peeing on life because I don't have what I want anymore. All I have is my life and the freedom to live it. She should be here but she isn't and I am. I don't say I want my life. I prove to myself that I'm working for it and go through things that will help me if I can move forward on them. Like disappointing people. Some remain out because I said so. Many though are back in my life because the minute I opened up that was interesting.
In a nutshell, I live every day to learn to appreciate my life and after a couple of years of doing that, I did.
Bama, you know I love you too and hugs to you too.
Mary, I would say actually let it go. Let it all go.
Wolf....Some of us don't post as much as we used to post but lurk we do...... As you say so well and sweetly, be our LO still here but not here or if our LO has now bestowed the *upon some of us, we do get to a point where we have to begin to live our lives. After all, our LO would want and expect nothing less of and for us. It would dishonor the wonderful world we did share while we could. I am finding that to some degree now. No that does not mean there is any special anyone, not even a someone...but I am finding things that give me satisfaction and joy these days. As odd as it may sound, all the funds I rat holed in case a NH was going to be needed are going into the beautification of my house...my new driveway and planter and patio in pavers including a custom feature reflecting his naval aviator wings ( someone mistook it for whale tail tsk tsk looking at it from below..driveway is a slight hill) and now I am working on the front yard...drought is driving many of us to get rid of the grass so I am taking advantage of the cash for grass project sponsored by the city..and it is looking amazing and I am proud of my design....and just day before yesterday ( 30 Oct) my oldest step daughter became a grand mother for the first time...makes me a very young great granny as my step kids are close in age to me....an 8#9oz 21 " tall baby girl...with blonde hair.....:) . As hard as this journey is, as heart breaking as it is to see someone we love decline, when the scab finally shows up we do begin to heal...and find peace. Wolf, I hope you might reconsider and at least continue to lurk and now and then post one of your elegant postings..We are going to miss you and that would be yet another loss we have to endure..( call it a guilt trip if you like) but do drop in from time to time...Phranque does and it is a thrill to read his comments when he comes round... Blessings upon you and those you love..
May the eight pound nine ounce twenty one inch tall baby girl have a long and full life.
I take no satisfaction in what I said. It's one more transition I don't really want. Things are leaving through the out door faster than anything is coming in. I have no prospective life because eight years after AD really entered I have done and thought nothing much except going through it as best I can with her and then three years of trying to get off the floor. I know in my head I'm doing not badly overall now but in the sense that I have a floor to stand on and nothing more.
I'm painting. That's one thing I genuinely have. I've made one friend. I can survive on my income and assets. And I just barely hung on to parts of my earlier life where I'm glad I did. And unbelievably, that makes me come out of this pretty well. That's just sick.
All I did in that post is acknowledge what's happening to me anyway - which frankly is unwelcome. I'm so tired of looking up and realizing I'm losing another thing I could spit blood.
I'll always trade an elequent post for a penetrating one. I happen to know for certain they aren't any happier than I am. I just erased seven specific examples of people around me. Too much detail. Just believe me I have endless detail that supports the theory that my situation on balance is comparable to many around me. It is so by each person's nature and their relationship with their own circumstances.
I'll give one example. My sister called last week and went right into how she could smell mom when she opened the boxes. Mom died five years ago. I want to get her over a childhood abuse memory and she knows I think her keeping those boxes is unhealthy; but, in she launches with how they smell as though nothing has ever been said. She just wants to spend time with her grandchildren who are growing past playing with gammy and is almost equally unsettled that her husband will soon be in her life 24/7.
I can do a sketch like that on everyone I know. I have no motive to put them down. I could actually use a stronger sister. But I have to understand just as I know my SIL phoned to say she was ok that I was seeing another woman which she fabricated out of thin air. It's her authorization to push me away which she's doing anyway.
The point isn't them. It's that this is really my life. Empty of meaning except for pieces because she was my meaning far more than some might consider healthy; but, which was also in retrospect the center of my happiness. If I'd known that I would have annoyed her with my clinging. We both thought it would go on forever and found out otherwise.
Instead I have to push away from her before she is gone where I have lived a ghostly three years just getting up. I can't abide with the talk of wanting to feel better and wishing we find our way and hoping something saves us. I've been there. It's help yourself or waste your life. The mental issues are real you know.
There's no one who can help me because I'm in undiscovered country where someone can point out to me another AS board member saying these things before their spouse has passed. I'm so strange I invented my own religion as a young teenager. I don't want to be different all the time and these days to be honest I'm a little sick of it.
The penetrating part is that even though I feel I do nothing but struggle, when I look over my shoulder I see and can detail lots of things that have gotten better and nothing that has gotten worse. Dianne was dying out of the gate. It's me that is the only variable. Only I can find my own fun unfortunately. And since I can see that I've gotten better these last three years, I don't need a crystal ball to know what the next few years will be like. They'll be better if I keep going.
I'm not afraid of the future but I don't hope anything. Like a spongeball that's been left out all winter. But like I said, I look deeply into other people's lives (wannabe writer) and I can see that the best overall place for people is when they don't realize what they have and instead grind against life like it's going to go on forever. The second best place though is to genuinely appreciate things we do have. That's the one that's done all the heavy lifting so far.
I've said I think I'm a pretty good actor. There's one role I can't play because it would be so fake - a happy person. How sad is that said the clown to the fencepost. Yup. But I have a different question. When you've spent years working hard to change - how do you stop? Which would be weird except I don't know where I'm going anyway so what's the difference?
Last point. Can you be happy in an empty life? And doesn't that mean I have to go out and do new things? Well that just makes me mad because I don't want frigging new things which means I have to learn to frigging like new things and that makes me puke.
Thank you for the good wishes for that tall baby girl...all 8# 9oz of her...somehow long fits snakes better than people babies...
As to much of what you have said, I hear you..especially about your sil seemingly pushing you out of her and maybe the rest of the inlaw family's lives..I too have that going on. While it is what it is ( to use and over used statement) when you think that you have been with a close family, that there have been many great times, or so you thought, in my case, not having to face what you did with placement issues but rather the actual physical death of my spouse, now that the funeral is over, I never hear from my bil who is the father of my god child...and he is up in my area now...yeah he met one of our caregivers and in a short two months of knowing her, was so twitterpated, that his visit then confused my husband even more and even though I asked him to stay with us when he visited his brother to stop this unnecessary confusion and endless 20 questions for me to answer, he never respected that and the caregiver herself should have known better! So now he is in my area and I don't hear from him at all...no I don't call him because he does go south now and then..it is it's own story. But from the brother who spent so much time with my husband and now ignores me....and don't say seeing me reminds me of how ill his brother became and he can't bear it...bunk.
So it is as you say, find our own way is all we have left..we are blessed if we do still have a small handful of friends who rally around us now and then..I am lucky that way...but then one of them is my 5th cousin! We found each other doing genealogy believe it or not..were friends before we even knew there was kinship distant though it is.
It just feels everyone is drifting off...what...we remind them of mortality maybe? Or that oh perish the thought they could end up in this boat too??? shrug shoulders....
And as you imply, figuring out what we all want to do when we grow up again is at times dreary even if we do have hobbies..for some of us it has been a long time since we got to do them and now we have to relearn some of them. I mean if you made stained glass windows and haven't cut glass for some years due to caretaking...well it is a skill you have to learn again...Yeah I used to make small ones....now it is photography but it has been so long since I have gone anywhere...and it is time to change that when funds permit.
Yep it can be a difficult road alright. And you summed it up better than just about anyone could..and not in a pity party way..it just is...
Oh well, gotta go get the cats some Friskies...if you have not googled Dear Kitten to see the Firskies adverts where the adult cat, a Tabby, feels compelled to grudgingly introduce the new kitten, and orange one, to the house or the dog...google it up..if nothing else it can make you smile. Be well, Defy the odds! Let the Force be with you!
Mimi, I was intrigued by your comments about having to relearn your hobbies. I too spent years doing stained glass work. I even had a studio from 1994 to 2001 where we lived in CT. We made small stuff, mostly suncatchers for the tourists, did a bit of commission work, mostly small windows, and taught beginner classes. I still have thousands of dollars worth of equiptment and supplies and haven't touched it in years. Sometimes I think I would like to get back to it and other times I just wish I could get rid of it all.
There is so much to say…so many thoughts and memories…some moments of pure happiness and joy now…when I wake up after a whole night's deep sleep and look out my eastern window at the bright morning with all its possibilities. I've been back to New York, stayed with a girlfriend for two nights, and for nickels and dimes am renting a room in her house. It will give me a "crash pad" in NY, and he house is walking distance to the train to NYC. I went up the Hudson to our old home--all alone--I didn't want company for this. I ate a delicious lunch in the restaurant where we had our first date, walked by the creek where we had our first kiss, and went to our old bank, the post office, and through the car wash. Just everyday, familiar, comfortable "homey" things. I parked by our old house--looking very autumnal with pumpkins and mums on the front steps--and I pulled around to the other side (house is on a corner lot), where I sneaked through the arbor gate and picked one perfect rose that was still in bloom. I brought it home and pressed it in his Bible. It is a Blaze Climber that I had planted years ago to go up and over the arbor. I stayed in the Youth Hostel in the next village down for two more nights--what a hoot! It was fun to be a tourist in the little, historic college town. I ate delicious, sustainable, local food, walked and walked down along the river and past the quaint stone houses on America's oldest street, and prowled through bookstores to my heart's content. I read one of Mary75's books in the Hostel at night (will review it on Amazon--have not got it written yet), and played the piano in the Hostel's living room.I got my hair cut, too. It looks much better. And of course…the cemetery. It was such a comfort to visit him--I went twice--dissolving in tears both times, just leaning against the mausoleum wall where our final resting place is…just putting my hand over his nameplate and crying and crying. It is such a beautiful setting…we are in an outside wall overlooking the Hudson and the mountains across the river, and the cemetery itself is beautifully landscaped and maintained. With more leaves off the trees, the Hudson is even more prominent, and I just could not wish for his mortal remains to be in a nicer place. I know he likes it there, because we picked out this spot in 1997. It was gorgeous then, and it's gorgeous now. The cemetery people are going to put a window box full of Christmas greens in front of our spot starting after Thanksgiving and leaving it there until after the first of the year. So that will be nice, and it was fairly economical. So I feel much better in some ways, having been able to get "home" finally, and feeling such a sense of peace and comfort to go back to the old, familiar places where we had so many good memories. And with my little pied-à-terre in Beacon, I can visit DH whenever I want, can get up to see old friends, get to Manhattan, get up to Montreal in one day, and just not feel so cut-off and isolated down here in the Heartland. DD can put the grands into after school care on just a few days notice, so I am not trapped by childcare. Of course, I need to make an effort here. I attended Mass for the first time since the funeral Mass. I got up, put on a half-way-decent outfit, and went to the 10:45 Mass in the church. (Not the last Mass in the side chapel with ten people--I put myself on public view of a full, big church.) It was hard to control the crying, and some tears did fall, but I was stern with myself and did not let myself crumble. And guess what? He was right there behind me as I walked down the aisle to receive. Yes indeed, he was there. It was the most bittersweet feeling…there are no words. So anyway, I lurk every day, but probably won't post as often as I used to. Wolf, I hope you don't disappear completely. And I'll definitely see everyone at the virtual Christmas Lodge!
elizabeth I loved reading this, which your wrote two months after his passing. You are an amazing person I admire you so, and I know you help so many others by staying here and sharing your positive ways. What a beautiful story and I can just picture those roses.
Elizabeth, What a beautiful story. So descriptive I felt as if I was there with you. Thanks for your update. Like Coco said, your positive ways are a true inspiration.
Oh Elizabeth^, how wonderful you were able to return "home". What a gift that you and he were there together. The pied-a-terre sounds like the perfect solution to both worlds-the heartland and your true "home". You are a wonderful wise and caring woman, I am glad you have contributed to this site and helped all of us with your common sense and direct approach. I have learned much from you and I am still on this journey.
I will plead like a spoiled 3 year old....please, please don't go, we need you.
And wolf, in my best spoiled 3 year old voice pleaseeeeeeeeeeeeeeee don't go. PLEASEEEEEEEEEEEEEEE!
Elizabeth, beautiful story. I was there with you too. See you at the lodge.
Mimi, I think authorization is one of the last hurdles. Not saying it, living it.
Guys, all I can do is explain myself. I feel like I can't stay in stasis any longer. I don't mind sitting here by the phone and being ready to help but I have to let her go in my head to move on in my own life. I hate this. If I hadn't spent the time genuinely learning to focus on my own needs and time I would still be a mess. Because I have done that these last two years I keep feeling better but it means I accept the Dianne I loved passed four years ago and while it is still her, it is her body and trapped soul that I am watching over. We are extremely late stage.
Because I know it will be a miracle (or not) that she is here a year from now and I know what all this has done to me, and I don't know what her passing will do to me - I'm trying to shift to safe enough ground. I was seeing her too often where she has no idea who anybody is or what anyone is saying - and I realized I was becoming attached to the people there.
Alzheimer's has caused me to question so many beliefs. When we call someone a person do we mean the person they are or the body they are in? Why do we hold blameless those who do not have the capacity to operate their personality? Why do AD spouses know so well that the personality is the person? Dianne is here. She is at the Westmount. I know that. But she is not here and hasn't been for years and I know that too. What should I think?
I have chosen. My Dianne died four years ago. I will see Dianne through this but my Dianne died four years ago and if she didn't why did I grieve so long? The mike drops for me when I look in the future. The kindest thing is that she passes without pain where she has no other prospects and can hardly chew and swallow.
When those nice people at the Westmount are suddenly out of my life it's going to hit me. When Dianne passes and I have to go through a funeral for her it's going to hit me. When I go home with her ashes and her self absorbed family are allowed to let go of me completely, it's going to hit me.
I resent deeply a great many things about Alzheimers. I resent we were never allowed hope. I resent I was helpless. I resent what the disease puts us through. I resent that it broke me. I resent that it made me put my wife into a home. Mostly, I resent that I am insufficient to not stay a gerbil at the same wheel over and over because I can't find a balance point.
I seriously considered driving us into a cement bridge. I wasn't thinking straight. I swear it was the bloody cats she wanted that depended on me one night. I came away from that knowing I wouldn't. Then I broke down and put her in a home. Then everybody who hadn't already went away. Then I had to face a life I didn't want but had no choice but to live. You want anger? I've got your anger right here. Trust me.
I walked from that hole to proven balance. It took three years more of my life and I had to let Dianne go as though she has laregly passed already. And I'll tell you something. I want there to be a heaven. If there is I want to be judged. I want to read the text of that judgement. I want to read what actually happened.
So I wrote her goodbye and I'll make funeral arrangements one day and one day thoughts that I should bring her home, that she is in there, that I'm not doing more, that there is nothing to do, and on and on, will have ended and then the final silence and what whithered ramparts remain will break, and crumble, and fade away over time.
Know what? I don't mind what I went through. She's worth it. (that better be in that book)
I chose a road. I can feel myself moving down it. Instead of peeing on everything going by I'm getting a convertible. Sue me. And I'll tell you another thing that better be in that book. "I want you to be happy". I'm on it. It's going to be a while longer. Your cats say hello. Actually they don't give a rats behind the little dears.
elizabeth, There is much to be said for freedom. Your husband is free of the terrible suffering he endured near the end of his life. And you are free not just from the crushing duty of 24/7 caregiving, but also from being bound by geography. I am so hopeful for you.
Wold\f. That was not a rant. You painted ( since you are into painting) a really well defined portrait of what we all go through with this disease called dementia. Yes, the "shell" of our loved one still lives and breathes and maybe eats on their own power, But the "who" that filled that which now looks somewhat like our loved one, i just that...and yes we can see the twinkle in the eye and hear a laugh now and then that can remind us of who they once really were and are not anymore..and that is hard and as each phase changes from one bad stage to another, we begin the grieving process all over again and it doesn't end until we have laid our LO to rest...and then there is that new grieving and growing process we have to face. You have been wise enough to realize this and there is much of this hard sad road you have already travelled and the way you express your journey brings a clearer focus of what so many of us feel but are loathe to express as well as you do. I think that is why so many of us value all you have to say..it is not just what you say but how you say it..with such depth of thought.
Wolf, I also had some crazy thoughts when my husband was diagnosed. Although I was in despair, I never thought about driving into a cement bridge. But I did consider going off the grid, by which I meant taking my husband and moving from southern New England to the North Country of New York State and living in a remote cabin that was heated by wood and lit by oil and battery lanterns, maybe with some solar panels and a windmill. Really a ridiculous idea given my mechanical illiteracy and my enjoyment of modern comforts.
Like you, I rejected the idea because of the cats. I did not want to let them out to hunt in such a wild place because they might get eaten by a coyote but how could I assure they had enough cat food? So we just stayed where we were. I think cats balance us by reminding us that the world does not revolve around us - it revolves around them.
What I see is that I used 34 words to avoid saying I don't care anymore. I love her but the grape has been squeezed dry and is dryer than leather. I've cried over her and felt for her and missed her way over 1,000 times and that is an insane thing for anyone to spend years doing. I don't mind. But I'm done.
Dianne,
I love you kiddo. I'm not going anywhere while you need me. But I have long stopped investing feelings into our relationship and after years of mourning and grieving where when you pass my life doesn't change by a single drop except I no longer go to the NH and I no longer hear from your bush league family. My family hasn't cared yet so don't feel bad.
I hope it doesn't get hard, but whether it does or not I will be there and help you because that IS you; but, I'm being your friend and partner - not us. We ended years ago for which I blame neither.
You got help all the way through. Doctors, specialists, professional caregivers, me, the nursing home. They take you out on trips in your wheelchair to such an extent that we are neck and neck on who has actually gone out and done something this year. No one has done any of those things to help me. Instead I went through such a horrible eight years I earned a string of actual medical conditions even though I don't have any disease. I don't even have a cold.
The idea that only you matter is revolting garbage. For years when we went through it that was true and that's fine. But not lately because you are safely in the professional care available to me where safety is the only thing we can give you. Somewhere as well, it behooves you to take that on to yourself. This is your destiny. We both have backbones and I'm not the only one who has to answer the call.
You can't think and can't take these things on. I'll do it for you. I'm the one who needs help. I have to find ways to live a life I really don't want. I've wrestled with the powerful things this disease brought for years every frigging day. And while you go gently into that goodnight, I will face this the rest of my life. Menu for one. Go ahead knock yourself out.
And ultimately, I know you didn't do anything and aren't even having this conversation. It's all me and my conflicts with getting better by trying to accept it's all happening without turning against humanity or turtling into a shell - never mind feeling good.
I have felt good and I have enjoyed days. I do it by letting you go emotionally. By realizing that is already the truth and my fight is to keep authorizing myself to have more. That's the way it actually is whatever I think. It's ugly and I hate it but as these storms recede my boat is still afloat and that's the only way we can go into the future. I go into the future. You are in my memories.
That's where the real hardship is now. I face it alone. And somewhere the known fact for eight years that you are dying and will have died just has to sink in or we are both doomed to be destroyed by Alzheimer's. And the only way for me not to be is to get over it in real functional ways and the only way to do that is to accept the truth that 'we' (it was great) - have been over for some years and I don't need any more reins in my hand to take ownership of that and live it. And the single key there, my other half, was to really let you go.
This is all about guilt. A nasty, brutish scavenger that is all teeth and dead eyes. That's all in me too but it's real enough. I plan to barbeque it but it's a slipperly thing to catch.
Good for you, Wolf. "My boat is still afloat." It's kind of like we were all on the Titanic, which sunk with our Alzheimer's loved ones on board…and we, the spouses or widows/widowers are out there in the lifeboats, with the Carpathia steaming toward us to take us to Nova Scotia so we can get our feet on dry land and try to move forward after the disaster. Our boats are still afloat, and we are headed for shore and for our futures. We are exhausted, shell-shocked, grief-stricken…shivering in the dark and cold, huddling under those blankets they gave us….looking across the dark waters to those far-off harbor lights. You said it all when you said, "I'm the one who needs help." That's undoubtedly true for each and every one of us. Our ill or deceased spouses are cocooned in care, whether it be home care, an NH, or sleeping peacefully in the cemetery. And here we all are, the walking wounded. It's a good thing we help each other, since so few on the outside of this Alzheimers nightmare can relate to it. From everything I've read about you in your many posts, I would say you have nothing to feel guilty about. Catch that Guilt Critter with a Have a Heart trap, and release him into the woods so he can run free. No need to barbecue him--just let him go.
Wolf, I'll say it again...you put it so well what we all feel and know to be true. Our LOs are wrapped in safety because of us, the caregivers. Looking back, it did come as a shock to realize that things in the news, or family issues that once would have been important to him not only were not any more but that is view now was 180 out of what it would otherwise have been. He didn't have the capacity to compute the depth of the details of an issue. So in those instances, we do begin to feel the awful feeling of our LO drifting away...and they continue on that path in their now happy go lucky way....I found myself at times thinking how oddly blessed he was now not to have to concern himself with the worries of the world in which we live, I still do and how I wished I had someone to share my thoughts with in the way a couple does...and as you so aptly put it...was now on my own to face it and find my way.
Your letter to your beautiful Dianne was heart felt and heart breaking all at the same time..and there is truth in it for all of us..
I love releasing the guilt critter into the woods, re Elizabeth. Done it. She's happy there in the woods. I recommend it. Every so often she wanders into the yard again, and I toss her a bone, but we've worked out our relationship. Life is short. Live it. Wallow a bit if it helps you process...we all need to here and there. But don't get mired. Live. Thought for the day: You never know what or who needs you in this world, so make yourself available.
Thanksgiving coming soon and single son and daughter want me to fix a "Real Meal". Zero interest on my part to spend time cooking. I think I'll look into deli fixings. Feeling guilty -- yet not.
I will be cooking for 7 this year. One DD lives with me, other DD will be bring son and daughter, my handicapped son who lives in a facility and a good friend who also lost her DH this past year will all be here. It sure will be better than last year when I ate Thanksgiving and Christmas dinners off a tray in the bedroom while I fed Ron his meal. I think those were the only times when I really felt sorry for myself (poor me!). I will do it the easy way and buy premade pies. Stuffing I have to make because it has to be gluten free. Keep it simple and I think it be OK for me.
Here I am again - 2nd time today. I just had a heart breaking experience this noon as I was sitting with my sister in the nursing home dining room. A woman with early onset alz lives there also. She came in with a younger woman who was trying to persuade her to sit down and eat the lunch they both had been served. This went on for a few minutes with the older woman not cooperating. When she finally was seated she began loudly protesting about the food. The younger obviously the daughter began to cry and the attendant took her mom out of the room. I felt so sorry for her she kept apologizing to the room. Finally I put my arms around her telling her there was no need for apologies - in fact most others in the room didn't even look up. My heart hurt for her knowing there are many days ahead that will only get worse. Sad