We celebrated our 44th wedding anniversary yesterday. Well the staff and I did. In our nursing home the staff from other areas fill in to feed the locked up ward my wife is in. They need the most help where most of the complex is an ordinary old age home. And our last anniversary where she knew what one was occurred in 2010 on our 40th. Fourty great years. She's taking a run at giving us our 50th against all odds. What a trooper.
I'm a trooper too. I didn't come apart like a dropped watch (you've got to be old to get that) although I seem to remember spending years on the floor whimpering and begging for a miracle. Like Dianne suddenly snapping back, laughing, and saying "Just Kidding!!"
That didn't happen. And I'm running out of excuses. They weren't excuses before where in 2011 I didn't have a single day I was normal having transformed from a human being to a 24/7 caregiver and they weren't excuses in 2012 the first year I was alone where I can remember a single hour in the entire year where I didn't feel alien to myself or anything else. But now later in 2014 they are excuses because I know I'm me, I know I use Alzheimer's to avoid things I don't want to do, and the wounds and fears that kept me safe seem dumb and a waste of time.
I thank God, nature, and my parents for the opportunity to be on this rock and pick my nose and I don't want to waste it anymore so I'm announcing that I've chosen what I want to do. Nothing. And where I want to go. Nowhere. I've got everything right here and while my wife is trying to set a record for EOAD over there, I am here finished with licking the wounds, picking the scabs, being done to, feeling powerless, being the vicitim, or worrying about what did and didn't happen to me or what I did and didn't do and what someone else did to someone else.
I was quite smug about who I was, wrapped in a package of things generally being easy and fun. Friends, money, travel, we had it all. I retired when I was 53. And I was happy in that. But Alzheimers made me grow up more. I would still be what I was but I'm not because I had to learn the hard way that truth in life goes deeper than comfortable times.
My god smiles a lot but he's very demanding and always points that finger back at me. If he does it I didn't. I only do it when I do it otherwise there's no point to it. And what I've done is walk all the way back by myself from the abyss of dementia caregiving and the serious effects of that to just being here now. I don't care what the name of what is killing my wife is and I'm not blocking anything out.
I once asked what he needed archangels for. He smiled. He doesn't. I don't either. I said years ago here I was going to do what I have done. Kill Al Zheimer. Violent action and reaction isn't the way. You change to the new reality where I said I only had one weapon but it was a good one. Truth. My truth. My ownership of that.
I lied though. I used my own truths to figure things out eventually but I couldn't be here without the immovable object. The will to want to be fully myself again because as weird as I am, it's the only place I really call home. Not that it magically is given to me but that I earn the ability to let hate go as my focus, to admit the resentments and fears to myself, and to help myself overcome them. And to keep fighting all that until it stands the test of truth. I wish my xfriends well because it all is what it is and I don't pretend to know everything it is or was but I want peace with it all and I have it. I judge that they see what they see and I see what I see and that's all there is there. Harbouring resentment is me bugging myself about the past. I'm done with that which is true only because it stands the test of not caring about this for some time. Only when it passes the tests is it truth.
I've come full circle here. My first post talked about it and I get to see if starting over means you know the place for the first time. I doubt it. I know I've travelled this road because I have deep faith in what I believe. I also know I make that up.
Alzheimer's in it's progression sunders "us" into some things about them and some things about us. Eventually we all arrive at the things about us. I travelled that road guided by the Americans. They have a saying "you've got to want it enough". I learned that is true even when the goal is just to actually feel fairly normal in the life on offer.
Some of this sounds over the top. I say to you that when you turn up the wanting dial enough on anyone anywhere they're doing it. That's why whatever media we jump to advertising is coming with it. Making people want things enough. That's how the mind works. Not your mind. Everybody elses. Next!
Wolf it sounds as if you are finally coming out of this fight with Alz Hiemer. Maybe not the victor but you have survived all the rounds so far and not been knocked out. One final one left.
Ex friends....toxic friends....I just don't have the time nor patience for them any more...Did I tell you I don't mind living on my own. Interesting that there are men coming and talking to me and wanting more than friendship....do you think it has something to do with living in a cabin by a lake. :) Most of them don't have a pot to pi** in or a window to throw it out. So not interested in going back to cooking and cleaning and picking up after anyone.
Wolf, I think that Hebrews 10:17 is buried in there somewhere. The longer we harbor resentment the more miserable WE are. I am so glad to see that you are making your way towards forgiveness. It will make you feel a little lighter on your journey that we have been chosen to make...whether we like it or not. We all reach a point that we have to let some things go because they are just a waste of our energy. We have enough on our plates w/o carrying anything unnecessary along the way.
Amber, you did say you like living on your own which in my case doesn't mean glowing in happiness suddenly and doesn't change that I'm lonely at times and extremely lonely sometimes. I haven't had anybody wanting more than friendship. I'm not in that kind of head space anyways. I want to laugh or at least smile and I have the Pink Panther on TCM channel which still makes me smile. It's downstairs with the TV on full so the whole house is full of their dialogue. "Oh my darling your feet are so cold." and so on.
I probably shouldn't be this honest but speaking as a guy who's always enjoyed the womenfolk I simply do not feel that urge the way I once did and frankly neither did my wife. We talked about everything and tracked her periods together (partly why we don't have children) all our lives until that went away. We once guessed that we made love 4,000 times. It was one of those hot summer days where we had rented a cottage and gone swimming all day. She was reading a book and we got to talking about it and it became obvious that our lovemaking was something that had become less frequent as the years passed but had also gotten more interesting. I nodded in my batman costume that that was true.
Other people can knock themselves out. I applaud them. I have sex regulary with someone I really like and I'll just leave it at that. I do have to cook, clean up, and pick up after him though. Being interested in writing and comedy while fantasizing can be a riot. "Yes, but what's her motiviation. Why is she there in the Heidi outfit?" And I drop what I'm doing so to speak and work out the character development.
Aunt Bea,
That's exactly right. I wasn't familiar with that passage in the bible but that's saying the same thing. I took a long time finding out it was only me that was suffering from my own focus. I have to be honest that I didn't forgive. I tried that for a while but it didn't work because it wasn't the truth. I don't forgive them. I accept we live in different realities so it really is letting go as you say.
I also believe Jesus was right to let the person without sin cast the first stone. I treated my friend with mental problems exactly the same way I was so hurt being treated. When I realized that I immediatly picked up the phone and told him I was sorry. He cried so hard that someone finally admitted we didn't help him when he was desperate. Follow the truths. You can't handle the truth! Oh yes I can.
The truth is that caregving broke me and I put my Dianne into a home never to come back out because I didn't want to anymore. The truth is that learning we had Alzheimer's and that it was hopeless was the single hardest thing about all of it. The truth is that Alzheimer's beat me so badly I thought longingly about suicide for a while.
Getting over that many friends and family turned their backs on us and pretend they didn't is bush league to what I've overcome. I learned how deeply resentment to great hurt roots where the hurt is the primary fact but the resentment is the cancer we create in ourselves. It took a very long time to learn that.
I got very hurt learning that they stink in real life. I did it too as I explained above. So what do you do about that? What I did was grab Gollom by the throat and made it my life's meaning to make him stop talking about the bloody ring. Eventually he did stop talking about the bloody thing and that part has been peaceful for some time.
I washed my kitchen floor two days ago. I've been picking things off it ever since. I washed it last in April. I've learned that if I keep the floor the way I want it I become it's b^tch. Every crumb I dropped cooking today bothered me and I wiped them up in the middle of cooking. That doesn't worry me because in a week I'll forget because I don't actually care. And then after months of little wipes and pick ups I'll wash it again and it will really show up for a little while. Rhythm of life. My rhythm of life.
I believe in forgiveness though. I forgive Ron for being alone now and being forced to learn what he didn't want to know about me. I forgive Rod and Jennifer that they don't see either of their lifelong couples friends either anymore. Poor Rita died before Dianne. I forgive her very strange family for having each other. I forgive myself for beating guilt to death and turning my spirit and focus to my own life. I forgive myself for overcoming my own horrors and learning to comfort her and feel the love for her again after losing my way.
Foregivness is not what I do. Be and let be. That post up there is my testiment. Ten years from now I doubt I will come back here and read any of my posts. That one I will come and read again. I know exactly where it is and I will never forget where it is. It is my testament that I did what I said I would. I put it here on purpose where it will fade quickly into obscurity except for me.
My thoughts and feelings are all over the map and have been since I was a little boy. I know a lot of actors, comedians, and sports people throw up before they play so great. I know all sports players are supersticious(?), most extremely, because they don't know why it comes and goes when they always work hard at it. I know a lot of the great discoveries were made looking for something else. I know that you can turn a corner and your life can change. I know many people are too afraid to pursue or even imagine their dreams. I know many are called and few are chosen.
I just don't care about my comfort zone the way I used to before and I don't believe in comfort zones the way I used to. I'm not impressed with myself. I doubt anyone who survives a war is impressed with themselves. But I like the way that WW2 song echoes through my mind "till we meet again don't know how don't know when". They're not here anymore much but I become black and white and sing it for them.
I'm not easy to read at times. I don't rant the way some can. This is me setting off fireworks. If anyone is here five years or so from now watch me bring this thread up and talk about it. Everyone can choose their own ideas. Mine are just mine. Hardest thing in my life and changed forever by it. Dianne will lose her life by it. I have already become someone else and she is already with me in that and together we are seeing her through what she can have.
The hardest thing in life was learning how to feel my life again the way I normally felt it. What a strange thing to say. It may be zero different from our soldiers coming back from real combat and learning to live in peacetime again. I don't know.
And finally I hope I do something good with this time. I hope everyone finds what it is inside that helps each of us recover when that time is in the cards. I will be here to bug all of you. I'm entering a new chapter in my life this month. It's called W2. It stands for War Two. It also stands for the two W's. What and When. The twin idiots I am now going to raise.
What a strange place this has been in my life among my fellow soldiers in arms. The sincerest place on the planet I've ever heard of or had the privilege of knowing. Where I was welcomed with open arms when I was desperate. We are all warriors my friends. Try and grasp how strong you actually are for one moment. No hero is without fear - that is recklessness - real heroes die inside but see the thing through. I don't see us as heroes. I see myself as true to my vows where the fact of that overcomes my bad reactions at times when I forgot myself and acted like a normal human being with real feelings. Sorry.
What a thing. And thank you for my life. Beat up jalopy that it is. Look the seats have rips in them. Nevermind. I'll take it. And yes I'm out there today. Thanks and my humble apologies to anyone who actually read through this hoping I had something to say.
"You can't handle the truth"....my husband's favorite movie! Is all of the above clear to me? Ha ha, wish I could say "crystal" (also from the movie). But I do enjoy reading your posts and trying the heck to figure you out. Sorry, it's just my nature. The single most encouraging thing I see in all this is, you are on the other side of desparation. Gives me hope that we can all muddle through this muck and come out as survivors. There are times I am not so sure! I do know that there are too many times that I don't like the person that I have become in this role.
"Hardest thing in my life and changed forever by it". Yeah, your post had a lot of universal truths in it, that's for sure. I didn't get everything (the kitchen floor…rhythm of life?), but a lot of it resonated. I'm nauseated and headachy from him yelling all day yesterday for hours, and then having me up all night with him yelling and restless. Oh yeah, and he fell. I actually was able to get him up off the floor. Hospice keeps telling me to re-arrange the Seroquel dosages. Yeah, right. It may be a great med., but it does not work effectively for him. Well, the highlight of the morning was when he started agitatedly trying to jump out of bed at 7:30 (normally I'd be up, but was trying to sleep in because of being up all night)…and I wrestled him onto the bedside commode and he actually pooped in it. When you are thankful and happy that you are dumping poop into the toilet instead of cleaning it off of him and the bed, you have demonstrated a true AD spouse mindset.
Elizabeth, I do my chores when it seems right to me AND I don't give a flying the rest of the time. My life, my rhythm. These things didn't matter to me when I had her because I was permanently zoned out, but they ended up mattering and it was one of the "noises" I turned off. I was celebrating that I've learned how to do that.
Aunt B, I'm the same. Trying to figure stuff out. You're doing better than I did when I was 24/7 because back then I hardly knew what my name was I was so exhausted.
And guys, we do have to keep in mind my Dianne hasn't communicated for 4 years in even the simplest way and is permanently in a wheelchair and that we were considering taking her to semi-solid diet over a year ago already.
Aunt B is right, I'm on the other side of desperation but I'm doing miles better than surviving. That's a big part of my little celebration yesterday.
edit - there's another point to understanding. We are EOAD. I'm not qualified but it does seem quite clear to me that when you get AD when you're noticeably above 65 I believe it moves slower generally than when you're under 65 when you get it. I'm not sure what the right year to pick is but I observe a clear enough consistency while the debate goes on. I have a suggestion to the medical community - measure a very large sample size.
elizabeth, Seroquel may be a "great med" and I realize that many people on this site, including nurses, swear by it. But two years ago, it almost killed a friend of mine who was in the early stages of dementia. She was saved only because her new guardian withdrew legal permission to administer it, so it was gradually reduced to zero. I realize that this is sample of one with its own specific characteristics, but it left a very bad taste in my mouth. I honestly do not know what I would do if it were recommended for my husband.
When I read on this site about the angry and aggressive AD patients, my heart breaks not only for their spouses but for the patients themselves. Who wants to spend years being out of your mind and raging against the very people who are spending their lives caring for you? No wonder so many people say they would rather be dead than have AD -- most people realize that the medical profession is impotent not only in treating AD but also in managing the symptoms. Really, it's like the Middle Ages -- sometimes I wonder if exorcism would work just as well.
Wolf…oh, I see what you mean now. That's a better approach to housework than some rigid schedule, I think. I bet your place is homey and comfortable. I have only two housework rules: I make my bed the minute my feet hit the floor, and I keep the kitchen clean and neat as I go along. Other than that, it's just trying to do what needs done on a flexible, ongoing basis--it would not pass my grandmother's inspection (if she were still alive), but I am not embarrassed to open the door to anybody. And I try to avoid clutter, although that is something of a losing battle. Clutter, like death, taxes, the poor, and Alzheimers, is always with us.
DH started showing symptoms at 75, and is now 89. As you pointed out, later onset seems to go slower.
Wolf, it sounds to me like you are in the process of taking another large stride forward, after having spent a period in lateral or reverse mode. Good for you, and I sincerely mean that!
Yesterday, DH and I spent a delightful day at another couple's cottage on a peaceful lake (no motor boats allowed). And, this couple "get it" because they are on the same journey. It is so nice to see my DH interact with someone else besides me and enjoy it. And we picked the perfect day for the activity - the weather was warm, and sunny. And it was a great day to be away from our lake - a holiday weekend and there was a wedding reception happening all day in the field across from our home - too noisy for us!
However, I figured that I would probably be paying today for our lovely day yesterday, and I am - DH is complaining of headaches and nausea, couldn't eat his breakfast. I did manage to get him to church, but now that we have returned home he has gone back to bed, and he will probably spend most of the day there, or he will be up complaining about how rotten he feels. Or he will be completely zoned out. He had the same reaction the last time we visited these friends, only then we didn't even get home before he started complaining of being sick and having a headache.
I'll take this as a small improvement, and be happy for it!
I'm still on the other side: hurt, angry, lost and lonely. If one more chirpy person tries to explain it all by saying "it is in God's plan" I might deck them. There are absolutely no miracle healings in AD. None. No saintly cures. Nada. It is 100% sure death preceded by ungodly suffering by everyone compounded with emotional, physical, and financial ruin of the nuclear family.
There is no explanation for me in scrambling someone's brain and then killing off the disjointed neurons slowly and painfully over ten plus years. I am not becoming wiser having learned a life's lesson, and my husband never had a chance for any redemptive lessons.
Try as I might, I keep thinking: what did I do to deserve this unending, profound sadness. It is like being in one of Dante's Circles of Hell. No escape. Every day is the the same, only worse. I wish I had never read The Inferno with the cause and effect images (thank you William Blake) burned in my brain.
"You just have to find joy in the life that you have." Really?? Another numbskull token of advice. Try finding joy while listening to gibberish and dealing with poop, knowing that it is all leading to a more final death than the death that has already occurred. "Swing that scythe again today and only claim a few more neurons, Father Death. Don't make it easy for any of us." Why doesn't it matter that he was a good person, a truly good person who cared deeply?
This journey profoundly changes us. Yes, I get that. But in the end, is it good? Do we survive and come out stronger? At this point, I don't think it happens to everyone. I want to talk about it and I don't want to talk about it. For all of the fanfare about ebola, it doesn't have a 100% mortality. People are talking about ebola and you can bet they will be interviewing the survivors and the doctors and the families. Meanwhile, a much worse killer is stalking the world, claiming every one of its more numerous victims, in as terrifying and awful way as ebola, but it (AD) is treated with a ho-hum attitude: take your sick spouse and move to the back of the line; AD is too embarrassing and unglamorous and besides, the family will take care of things. Why worry about this family when there is a devoted spouse to take care of it all. And if the spouse dies too? It is all just expected fallout. Now move to the back of the line, there are more important things going on.
I love you too Bama. Go Tide! It's a part of my lexicon because of you. Crimson Tide. I went and read about it years ago when I first heard you talk about them. I think about you and always hope you're ok in your newish place.
BQD, I always reacted when I got a taste of normal and had to go back to what I faced. I actually went through a period when I didn't think it was worth going somewhere because it was always hard after for a while because I was reminded of just what was taken away. I also still have mixed feelings about doing things with friends who rally around cancer and ignore alzheimers but I do think that's more now because I think that's too shallow for me to invest heavily in.
As we both know talking to someone in the same boat as you is a whole different world. It's our world. So we just talk.
All the pieces are there. We just have to put them together. We're still here and in the right circumstances like with that other couple we get to peek into that because the minute you adjust the world to our world - everything is normal. We're navigating through storms and that's what's actually happening.
No fisherman goes out looking for storms. They avoid them. They're not timid. Embracing storms is not indicated unless we're adrenaline junkies or we've lost our way. Remembering that when the world is adjusted to our world it is we who are normal is important because when you're back at the tiller riding each wave these thoughts don't cross our minds. You aren't the problem and you're not lost. You're in a storm.
It's hard enough dealing with this tragedy without having to listen to platitudes. The one I dislike most is, "Whatever does not kill you makes you stronger." Anyone who really believes that should come over here and look at my swollen left knee and elevated blood pressure, not to mention my diminished bank account and credit rating.
Pop culture is not up to describing what we all go through. We need the weightier stuff of good literature. You're right -- Dante is a good guide. If you are looking for an aphorism for this disease, it should be the words that he described as being on the gate of hell: "Abandon all hope, ye who enter here."
And your reference to Father Death reminds me of the eecummings poem that describes the downfall of a successful man:
Buffalo Bill's defunct who used to ride a watersmooth-silver stallion and break onetwothreefourfive pigeonsjustlikethat Jesus he was a handsome man and what i want to know is how do you like your blueeyed boy Mister Death
Thanks, myrtle, I needed some affirmation that I wasn't bad and had forsaken the high road. Today is a bad day, for no particular reason, other than it is all seems so meaningless. Live a good life; die a wretched death. Live a selfish life and die sleeping. It is all the same. Do we even know anyone who lived 10,000 years ago and what a mark he made on the world? Nope. Swept away with the sands of time just like every other living being.
I think I want to come back in the next life as a moss. Less drama, more staying power. Plus I look good in green.
""This journey profoundly changes us. Yes, I get that. But in the end, is it good? Do we survive and come out stronger? At this point, I don't think it happens to everyone. I want to talk about it and I don't want to talk about it.""
Speaking for me I have to say yes it has profoundly changed me and to the good in that I think I'll never be short sighted or have that take for granted attitude about life again or shallow about the way I look at people and things. I know I will/have gone on to live a fuller and better life now and getting my priorities in better order for me....like screw washing the kitchen floor it's a beautiful day out and I'm going kayaking! I have become more of a loner than before this disease hit us....I'm now really picky about what kind of people I allow into my life. Most are what I call driveway people....I'll stand in the driveway and chat with them for a few minutes but I don't want them coming into my home. I'm more protective of my personal life and who I'll let in. I've learned I'm stronger than I ever thought I was by facing this disease and fought the battle...It may have won by taking my hubby but not me though I have my bumps and scars I'm still standing.
From Wolf: >>I always reacted when I got a taste of normal and had to go back to what I faced. I actually went through a period when I didn't think it was worth going somewhere because it was always hard after for a while because I was reminded of just what was taken away.<<
This made me cry because it answered a question for me; it resonated so strongly. Before FTD "our" social life existed. My husband was more active than I was in community and professional affiliations so most of that life related to his activities. For reasons I'm sure all here understand too well; that part of life as we knew it fizzled and expired.
Last week I had dinner at the home of a couple I knew but my husband had met only once, and briefly. It was a wonderful evening, full of laughter and camaraderie. I came home feeling better that I've felt in years. But in the time since- now five days- I have felt frustrated and sad.
Wolf answered the question I've really been asking myself. Why, why didn't the good feelings hold? Because I had a taste of normal. And then it was back to the life that is now normal for me.
From myrtle: >>When I read on this site about the angry and aggressive AD patients, my heart breaks not only for their spouses but for the patients themselves. Who wants to spend years being out of your mind and raging against the very people who are spending their lives caring for you? <<
Goodness and potential lost forever and beyond restoration.
I prefer Dent's Inferno. Written by Arthur Dent of Shrewsbury describing the seven levels of commuting hell. Instead of plodding his way through hades describing his own morbid fears along the way, this is driving in London and the terrors of the roundabouts. Not as riveting but Dante's Inferno isn't exactly a page turner either. I was there not long ago and bumped into Beelzebub in one of the malls. Dante never mentioned the malls. He was too busy peeing himself about the stuff that he was going to suffer for eternity because he stole a bun. "Well, he had ADD you know." Bill Zebub pointed out. "No. I didn't know that." I said. "And the paranoia of course." he added. We both rolled our eyes. What can you do? "How's business?" I asked politely. "Steady." he answered shrugging. It would be.
I wondered afterwards what I would look like with ripping abs like he had but then there were the horns. Some women liked that kind of thing I've heard say but those hoofs have just got to be murder to listen to thudding around the house. Not my problem really. That's Bettyzebub's problem.
Most of Dante's inferno is a dive. Beggers hanging around begging for your soul. I'm using it. Get a job. Personally I think Dante would have been better off in our times where he could have gotten some good strong medication. I have no idea whether I ever get to meet Lou or not. That's not Cindy Lou from The Grinch Who Stole Christmas. That's Cinder Lou with the forked tale. Another winner storming in all angry because his needs aren't being met by (in this case) not life. Get in line. I tried to perk him up by pointing out Justin Beiber was coming but he shook his head and pointed up. "You're kidding." I said. Apparently thowing eggs at the neighbor's house doesn't get you in.
I prefer trolls in my stories. I bet if Dante had read Lord of the Rings he wouldn't have written The Inferno. Come to think of it Bill Zebub starred in that one too. Different makeup and I'm pretty sure he was wearing black lipstick. Too much information.
I don't mind talking to myself. I do it all the time. I took the car out for a spin this morning at 5:30am. I drive a stick shift and I love taking the tach up to 7000rpm and feeling the car do something it was designed for but is impractical during the day. At 6am there isn't anyone out on these slightly hilly, windy country roads except the occasional farm tractor.
Most of the people on the road in the city are bleary eyed and getting in line to drive to work. It serves them right for being young. I on the other hand am an old fart and I'm just reminding myself that I'm alive and crazy. It's Dianne's birthday today. No need to comment. She gets a massive birthday cake from her sister in la-la land where she has the nursing home go and pick it up. She of the matching tuxedo/gown sets for his and hers on the regular cruises but no dinner for wolf. Not a problem. They all visit Dianne and care about her. That's what I actually want.
I'm in my chrysalis waiting to be transformed into prince charming or I would be if I believed in simplistic garbage like the fairy tales say. I don't believe in scary either. Some people do weird and sick things, I get that but it doesn't make them interesting. Evil is a massive bore and fear of it is for children. Zombies walk the earth. I know. I passed them going to work.
Dianne is my age now for a month or so. Then I become that Beatles song "will you still need me will you still feed me...when I'm sixty four?" Yes I do girlfriend. Yes I will. As the trees zip by I see the ghosts of all the people I knew that are gone and I realize there's room for everyone and I'm taking us all for a little drive to get some wind on our faces or whatever it is they have in the windmills of my mind.
A group of crows is too interested in the thing on the road so I honk my horn and they all scatter complaining loudly. You're welcome. Drop by for birthday cake later.
Count me in (in our virtual world) cause I love cake. Well, actually, I love the icing from the cake. I will scrap it all off and only eat bout half the cake. But, hey! That's OK right? Sounds like you have started the party early!
Yes that's alright. Putting a smile on our face is a good idea. In 2011 when I had Dianne full time I noticed it was summer twice and had no reaction to that then. Not this year.
Wolf....as I was in the car the other day, I truly felt that Dado sent me a song, it just came out of nowhere. "Smile as your heart is breaking" Nat King Cole.
https://www.youtube.com/watch?v=I85ApzR43jU
I feel like the guy sitting on the edge of that rock in the video.
My internet was down since end of July so just got a chance to catch up on discussions.This one is very interesting I like how open others are abouttheir thoughts and how they handle their feelings.It's a hard road to walk ,but this site is so helpful,you know you are not alone in this journey. Wolf, I always love reading your comments.
Hope this is not off topic. Grief comes in unexpected waves resulting in extreme fatigue, sense of hopelessness that I can't shake. Have been through two Grief Share groups - know all the supposed things that will help and still the same thoughts of why him? why me? why us? Goofy thoughts that have pat answers that I've heard. I am overwhelmed by a sick, needy bipolar dd and all the responsibilities of now looking after the welfare of my 93 yr old sister who had to be placed in a nursing home. She has sunk into dementia and it is like living a nightmare all over again. Of course this time she isn't living in my home. Tired of hearing "be sure to take care of yourself". yeah sure -- thanks for listening.
Florence, I'm so sorry you're dealing with all these problems on top of your grief and sadness over losing your husband. It just doesn't seem fair that you're on the Alzheimer's journey again so soon after caregiving for your husband.
I have no advice to lighten your burden but I wanted you to know I am thinking about you and sending support and (((HUGS))) your way.
What a few months this has been. July 3rd would have been our 54th anniversary. Walking the beach that day I picked up numerous white roses. I know in my heart they fell off a boat, but I prefer DW deposited them there for me to find. In June I took my first airline trip in 7 years to attend my grandsons' graduation.(this after a career of logging 750K to Mil air miles a year). Three weeks later, I was on another trip for my granddaughter's Bat Mitzvoth, followed a week later by another trip to my grandson's for his Eagle Scout award ceremony. This was the the end of the cloistered existence I had shared with DW over the last 7 years. It was also the renewal of my life. As the result of Hospice Grief Counseling suggesting that it was "my turn" now. At 71 I had spent enough time grieving as a caregiver for a woman who could no longer recognize me or speak to me. I listened to her words and as a result, I met a lovely lady of similar history last spring. We have been living together for 5 mos. August has completed the circle of introductions; she has now met both of my daughters and all my grandchildren and I have met hers. Our new families say the same thing "we've never seen you look so happy" I keep saying our meeting is Fate is repaying me for all the sacrifices made in the past. While her attitude is; "I never thought it possible to feel this way again. "There are moments of grief over our losses, but we share our inner most feelings and soon return to positive thoughts. We just returned from a "moocher's" vacation spending ten days with friends in Maine, on Cape Cod and on her sister and brother in law's boat out of Boston. Next We have a cruise planned for November another in January.
I fill my days volunteering with Hospice at local hospitals conducting in-patient visits and am about to start home visits next week. I find working with Hospice very fulfilling. (The one year rule can be broken after meeting with one of their psychologists). My G/f fills her days in a much more traditional fashion, tennis 5x's a week and bridge 3x's a week. I can't believe so much has happened so fast and with such depth of feeling, but if you're open to it There is a life after AD. I know after DW's tortures of AD & Cancer and her final weeks suffering with Terminal Restlessness she's too is in a much better place.
Florence, It is very sad that your caregiving must continue with your sister and daughter. That extra burden certainly adds to the overwhelming grief you still feel. I don't blame you for thinking "why me" - it all seems just so unfair. When you feel the need, come here for a sympathetic ear.
Marty, Wonderful reading your good news. I am excited for your new found happiness - you deserve it.
Marty, great to hear some good news - you have been through a lot!
Florence, vent away, we are listening.
DH has a cold. This makes his dementia behavior much more noticeable. Yesterday he tried to brush his teeth with A535. I am moving the tube so he can't get the toothpaste and the A535 confused. The upside to his cold is that he is sleeping a lot more, and that gives me a chance to do some chores around the house that I can't do when he is up and needs attending.
Florence this is the place to vent. We all understand and feel for you. It should be time for you to heal now . But, you are strong and caring. Hope you can find sometime for you.
Marty..how wonderful that you are enjoying your life. All good wishes to you.
The friend I talked about not long ago that I thought kind of got it but turns out she does not, has ended our online friendship. She told me I have a choice about how happy or sad my life is, how I live it, etc. I told her I do not - not now anyway. She told me today that she has tried to get me to change my thinking, to get me to forgive my husband for his adultery (statutory rape is how the courts called it) and I will not be happy until I do. I had a choice to stay or leave back then. I sent her a lengthy letter of what happened, how things went down, why I had no choice back then or when he was diagnosed with AD. How because of his 'detached personality disorder' and now AD, intimacy, romance, relationship is not in his makeup - it is all about him. No amount of forgiveness will change that. I have forgiven but that does not mean I trust him. She has been working on her marriage but she also has a husband that can and wants to make it work. I do not.
With Robin Williams death and their talk about depression - I could really relate. I have battled depression I think for most of my life. Some years are better than others and I have been to the place like Robin where I have felt there was little other choice but death. I bet for Robin this was not the first time he felt this way but this time he felt the most helpless as he ever had. I sure hope this brings attention to depression and take the stigma away from it just like we need to do with dementia.
Charlotte Sorry you have been let down by your friend . Yes, the death of Robin Williams is tragic. It's hard to understand how he could feel he had no other choice. If only he had reached out to someone in his desperation.
It must be frightening to feel as you say you have. I sincerely hope you know that you MUST get help immediately if you should ever feel that desperate again. Choose life and reach out. We are all here for you too. I hope you are getting professional help and medication now. It is a very hard life you are living now.
Hi Charlotte, I woke up much too early this morning and saw your post. I am so sorry to hear that someone who you thought was your friend is not really one at all. From your messages here, I see that you have not had an easy life – either with your own family or with your husband. And now you have to deal with your husband’s AD, plus your own surgery, plus having to make a decision on what part of the state you are going to settle in. Yikes! You are a much stronger person than I am.
We are on opposite ends of the country but if you were here I would tell you to park your motor home in my driveway and I would pamper you, which is what we all need for a while. But I can’t do that, so please just remember that so many of us (including new members on this site, like me) admire you for your persistence, intelligence and wisdom.
As for your sanctimonious friend, don’t get me going . . .
Charlotte, I really feel for you. My DH had depression for years. Medication helped but there would be weeks that he only wanted to sit in his chair with the blinds pulled and not talk to anyone. My oldest daughter is bipolar and cycles in and out of the highs and lows and that has caused her a lot of problems. Her son is also bipolar. As an optimist it was hard sometimes to understand but I have seen first hand what a terrible disease this is.
Charlotte, I am so sorry that your friend has let you down like this. With all you have to contend with, you don't deserve this disappointment. While you are very strong and we admire that about you, it doesn't mean that you shouldn't have someone to support you once in a while; someone you can lean on. We cannot be there in person to pamper you, but you are important to us and we value your friendship. Sending hugs your way.
Charolette - and this is why this web site was created....others just do NOT get it. With a "friend" like that who needs enemies. You deserve better.
Marty - so cool to hear how you are doing.
Yes there is life after this disease.
Cloudy day today and might get some showers then it back into the +30C range. Nice to have a cool day to get things done outside....my To Do list is so long and I've just not had the motivation to get at it. I'm finding that as time passes, and I don't get any more hits, my mental attitude is improving and I'm actually getting happy again.
I also find I can only go into see him once every couple of weeks because it just makes me really sad and puts me back into a funk. I am putting myself first now and though I feel bad not going in more it's just too hard to recover from the visit. I told my daughter if I ever get this to put me some place that gives me good care and only check in once or twice a month....now that I'm going through this I don't want her to ever have to experience it.
Charlotte- what a pretty name. Unless someone has "walked in your shoes" no advice should be offered as I see it. I wonder how you've gotten along so well with all that's in the past. I have admired you simply because you know how to take care of that home you live in. I'd be way out of my element trying to do all you do. I don't think I would have confidence to drive across country. Just know that no one posting here judges - we all know better. ;) hugs to you.
Charlotte, A true friend would listen to your complaints/concerns, but not demand that you heed their advice, or else. Sometimes all we want is a sounding board, not advice. Apparently, In her opinion you should have done (or should do) this or that. It is always easier to pass judgment on others when you have not experienced what they have had to endure. Since I started reading here, I have been impressed with all you have dealt with throughout your life, and yet still manage to have an uplifting spirit. I am so sorry that you have lost the one person who you believed "got it" and who offered some support regardless of its content. You still have us - we care.