Just hobbling in to report I'm on the upswing. The ankle is still swollen. And I still have to ice. Today I went to the PT who also does deep tissue massage and is certified for lymph edema therapy. She worked on ma ankle and believe it or not, it was heaven!!! She used lymph edema massage on it.
For those who are still slugging it out figuring out what the new normal is one thing to put on your to do list is find a massage therapist with a PT background for massage therapy. I've been going for at least 18 months. Finally even I can feel the muscle relax and massage no longer hurts. I go every two weeks for a tune up. My doctor gave me a prescription for it!!!
When the caregiving chores are behind us we then diacover how broken we became physically. It's worth every penny.
I agree with you, Mimi. I've had great help from physiotherapists, too. They can vary in skill, as do doctors, and I've found the ones trained in Australia and England seem to help me the most.
This entire experience start to finish from the very first odd behaviors of Dianne way back in 2003 right to now thirteen years later, has been one kind of weirdness after another.
It took time to work it's way in that something was wrong and that that something was serious and then it took time to work it's damage to the point where Dianne was clearly having trouble speaking and thinking and being mostly like herself and that's when most of the kiddie pool of friends and family ran for the hills in droves.
What that meant in a nutshell is that the tribe felt they shouldn't have to look at it and that any kind of behavior to get away was more than justified. It was only ever Dianne and me anyway in our world and that's how it played out to the end.
I had no questions about sticking with her where it never occurred to me to do otherwise, but I did have issues with her being released from her pain; but, not me being released from mine. I have zero interest in continuing to suffer afterwards and I had no tolerance that anything would be sticking to me. Instead, to eradicate Mr AZ and undo all effects was what I lived for.
I mostly did that by whimpering where the onslaught of grief was overdone taking into account the contributions I'd already made and my arsenal consisted mostly of resentment, fear, dread, depression, anxiety, isolation, and I can't be bothered going on through the list. I feared for my sanity and I felt so beat up I couldn't even look at my future.
The second your spouse dies you are no longer an alzheimerspouse, you no longer are welcome to talk about your ongoing experience even though that is continuous for every single person, and you get a star and are directed to the widow thread where it was no shock whatever that there was almost nothing going on there related to what I faced now.
I was the first person to break that taboo and I got push back so I shut it down and moved to this widower thread where I continued firing the artillery into the unspoken without let up because in my world she is free of it and if I want it enough so will I be.
I was surprised though because what I expected was to keep on fighting to feel better which I thought was some combination of getting over what happened more and becoming more familiar with the future I didn't want. I still think that's true but that doesn't tell the story.
Instead I learned that the operation of the full blown personality is directly proportional to the extent of duress you're under. Put someone under more and more duress and their performance capabilities keep going down. What never occurred to me was take more and more duress off someone and their performance capabilities go up.
What is a full blown personality? Well for one thing they have their normal level of confidence as part of their outlook. People under duress don't. I'll tell you another thing I've learned. Confidence is the antidote to anxiety.
Grief hasn't shown it's ugly mug for many months where it was rampant at first which is fine but it ran out of gas which is also fine because I'm long at peace there. In fact, I believe it was on me to do that and help turn grief into sadness and missing, while at the same time never giving grief residency. It's unhealthy to avoid grief after they pass and in my world it's even more unhealthy to dwell on things that happened too long. It's just as unhealthy to dwell on my age like that as it is to dwell on her being gone.
I offer no one an explanation of the esteem and the respect I hold Dianne in or about the tears that come once in a while expressing our truths. She can't express those things but I can for both of us. But she is also gone going on two years and I am here and in that statement there is only one important fact in reality: I am here.
I don't blame people where I don't need a disease or a death to know that many people want something more meaningful for themselves and many want to change things in their life and what I don't blame them for is not seeing that it is they who have a death grip on the very things that prevent that.
I'm 66 now and my friend who's husband died four years ago called to wish me a happy birthday but mostly to talk about how sad everything is now and how hard it is to go on without her husband. She can't see that she won't let go and instead grips that tightly. He died many years ago. That happened. Let it go and get past it.
My best friend phoned. He's the one in analysis and on meds who still portrays what actually happened 23 years ago as something it wasn't while carefully avoiding what it was. You screwed up and then you couldn't face that and you still can't face that which is why you'll be in analysis and on meds until you do. It happened. Let it go and get past it.
Instead it's a cacophony of people who say they want to feel better but when you say the 'wrong' words like 'get past it' they react that it's a bad thing to say. That happened to me right here years ago. If people want to build a shrine and dwell where the loss was, I've said all along that I support that. Those people would be better off accepting their choice but most of them talk about their struggles in moving on in life. That's because they're not struggling to move on - they're talking about it while doing the opposite.
My sister is getting this and she feels so rewarded that she thanks me quite a few times when she points out I taught her that. She is long down the road of being OK with our mom's passing 7 years ago after being stuck so horribly. She is learning to let go of being the matriarch and getting mad that the kids and grand kids aren't doing things right. And she now talks about her husband coming home and has gotten my promise that what we say about that remains in Vegas. She's moving forwards she feels into her own new reality and I agree that she is.
I'm glad to hear when I helped but I also get help so it goes around just as it goes around who needs that right now. And right now I'm most please to say that I don't.
I talked about moving into something that feels more neutral but I am still surprised by the extent of what happened and how it did. I looked up one day and it was gone. It must have been like a log jam where there was some key log that moved and the whole thing came apart. I didn't see it go. I didn't sense or hear anything. I looked up and it was all gone.
Four months ago something happened that made me trigger a series of events in my life. That was mostly centered around things I needed to attend to and was triggered when my health card was rejected because I was dead. I felt overwhelmed that here was another serious thing going wrong where life seemed to have me pegged as a victim. Instead I made a list and I'm nearly at the end of that list. I don't know if that's related but I suspect it is. It marks when I decided I wasn't a victim after talking about that for months.
There's more. When the feeling of oppression and anxiety and the need to fight everything broke up and washed away (it went somewhere I suppose), it was part of that same event that I could feel suddenly that I was playing with a full deck. Anxiety shrunk like Honey I Shrunk The Kids and feels like normal thoughts of possible concerns which my normal confidence and normal eagerness to solve has lots of answers for. For many years anxiety about things seemed to be the dominant voice inside. I'd lost too many things and still felt the sting of too many hurts I guess and protect me was the order of the day.
I don't pretend to know what caused what. All I can do is put the cards I'm aware of on the table. The upshot is that I'm not a widower anymore and instead am unencumbered by my past, which doesn't just mean Dianne but also mom passing and retiring or any of the things that have happened to me so far.
I said all along that the entire journey is within and that all other references are metaphors. All of my comments about my family and friends are real and if any of them take umbrage with what I've said here I will face them. I have spoken my truth and only hide things I think might be more hurtful than helpful.
We're such liars and I say that with a great deal of empathy. We understand and even value the stories of sports people or others who fall down in circumstances but keep getting up and trying again while we talk about our own lives as though someone else steers that. Unwanted facts drop into blind spots where we lament the slings and arrows with our right hand while keeping a death grip on the solution with our left. I've known for a long time that I am my own deceit because I have self awareness which is both a blessing and a curse.
I said long ago I know what I want to do and that has stood many tests and yet remains. I will live and die alone and open to the arts and sciences of life. I can have all the people I want in my life without any conflicts with that. I have no real fear of either dying or whether something comes next. I invented my own religion because any god that needs me to kowtow isn't one, and should see a good analyst. I also recommend considering doing better work in the first place. Either I do have free will or whatever god out of the dozens of gods that turned out to be the one plays with puppets. Either way I'm coming in feet first.
It isn't like that. The universe is elegant and universal and egalitarian and so big it goes beyond what we can detect in all directions. No one knows how big the universe is and we're never going to which the physics of reality dictates. One thing we do know is that the composition of chemicals in our bodies is the same as in the earth and the solar system and the galaxy and the universe. The same four elements are everywhere in roughly the same proportions which means sacrificing the virgin to appease the volcano god is useless against plate tectonics. Hopefully it would be that religion that is the one truth because I don't even have a vagina.
Hi I know this is a long established thread on Widow/Widowers. I am kind of interrupting. Sorry. This is a quick Reintroduction. I joined this site in 2007, my spouse and I had a Ranch and he started having serious memory problems. He went down that horrible dementia road, mixing in a bit of cancer, COPD, and oxygen dependency. I learned how to run a ranch (and hide the rifles), take care of a desperately sick man, pay bills, etc. and then he died. My world stopped. The ranch is gone. I moved to the state where my children live (incase I break a hip they said). I am in a new town. I am making new friends, but oh so slowly. I look in the mirror and a 65yr old woman looks back. How did that happen? I still have "exCaregiver PTSD" and freak out if someone raises their voice. Wolfs insights are such a comfort. Don't look back, look forward. Don't just sit, move, build. Move thru the grief. Other's insights are huge too: Its going to take years so don't be so hard on yourself... I am a widow. Thanks for letting me interrupt. This is me. Hope it's okay if I begin to share a bit. Sue
Hello again, MsAbby, I do remember you well and I can relate to all of that! All I would say, is just keep putting one foot in front of the other and one day it won't be as bad as it is now. Take care.
Hi MsAbby. I mean Sue. You're not interrupting at all. I understand about looking into a mirror and seeing an old person looking back. I also know about post traumatic UNBELIEVABLY NEVER ENDING PILE ON MORE STRESS BECAUSE I CAN STILL BREATHE syndrome.
Now this may be more information than you require but these days I'm liable to look up from the Sears & Roebuck catalogue, see myself in the mirror and either do Gene Wilder in Young Frankensteen (Hello Handsome!) or Ricardo Montalbalmy Billy Crystal (You. Look. Mawvellous.) or I might just grin like Deliverance (I'm missing a tooth and look like them there hill folk yup yup) or I might just go back to reading why Tailor Swift has dumped yet another jerk and written a song about him because that girl is having a lineup of those. I almost start to wonder where the problem might be except I care about as much as she does (air kiss air kiss). When you move to tinsel town sincerity leaves on the first train out according to Dennis Miller, I nod knowingly on my throne and turn the page. It's good to be king said Mel Brooks directly into the camera in History Of The World which wasn't much of a movie but then everything can't be a Maserati. So I flip the page and read that water conservation has been so successful in our region that the city has to raise our water rates to keep city revenue up. That makes as much sense as anything else I suppose when you're using a block of wood to think with. Or that the French were banning Burka-bikinis because only real bikinis or topless is truly French, until their supreme court asked them to stop standing so close to their own exhaust fumes. And I saw that headless Britain is still running around in the barnyard and would be screaming that this can't be happening except everybody in power ran away. Nobody has started formal anything with the EU which has read in the papers that Britain voted to leave but they never call and they never write anymore. I leave the unread parts of the newspaper on the floor because I will almost certainly be back and sometimes, sometimes I wave at the guy in the mirror when I leave the way the dumpy little queen waves at her loyal subjects in such a detached and uninvolved fashion that her hand seems to belong to someone else. Sincerity is a valuable commodity because there's always been a shortage. Tell me about it. But I'm glad I buy the three ply and that's no lie. Click.
Wolf, I will not even pretend to understand all your words. Funny thing is, after reading, I sense that you only began to claw your way back after you received the notice that you had been declared dead. I am so glad that you did NOT "rest in peace".
Wolf, I don't understand all of what you say, either, but I completely understand what you said about confidence - that people under great stress don't have their normal level of confidence and also that confidence is the antidote to anxiety. I just realized this a few days ago, when it came to me why I could not seem to get most things done, whether household tasks or work-related jobs. It's also why I don't like to leave the house, except to visit my husband in LTC. It came to me that I had lost all my confidence. This long, hard slog has eroded the confidence I had in myself to do things I've been doing for decades. True, I've learned lost of other things -- how to deal with someone in the advanced stages of dementia, details about personal care and health issues, how to communicate with nursing staff, etc. -- all things that were never part of my repertoire. But in acquiring these skills, I lost my confidence in the things I have always been good at doing - prepping and painting a room, moving a piece of heavy furniture all by myself, putting together a detailed written presentation under a tight timeline, etc. It's up to me now to regain faith in my ability to do the things that somehow got away as I was focusing on Alzheimer's care. I'm glad that you are getting your confidence back.
P.S. I also don't understand why we don't hear more about Brexit. As far as the Queen goes, I love that she carries her purse on her arm even when she's in her own living room.
Myrtle, speaking of that handbag, here is a link to a lovely photo of the Queen and her grandchildren, including said handbag! http://i4.mirror.co.uk/incoming/article7799334.ece/ALTERNATES/s615b/Queen-Elizabeth-II-with-her-five-great-grandchildren-and-her-two-youngest-grandchildren.jpg
Oh, that is so cute - she let the little girl hold her handbag!
Here is a photo of the new PM curtseying to the Queen, who has her handbag on her arm. http://www.people.com/people/package/article/0,,20395222_21018181,
That is so funny, leopard print heels and all! Maybe the Queen will drop it one day and we will actually see whatever is inside! I think that I may have lost the plot because I find many things funny now and after reading the latest Wolf, every time I pass a mirror I look and say, "You look marvelous" ( Billy Crystal) and I crack up. Who knows!
You have to realize that you HAVEN'T lost your confidence - it is pushed away and kept away by the strain of these serious and ongoing events.
We can do things that help us. We can build confidence by learning how to create, manage, or hold moments. It sounds Zen but learning how to relax for just thirty seconds or five mintes about anything creates confidence that we can do it. Learning to sit out in the sun or under the shade and just listen to the birds or the children or the normal traffic sounds for just thirty seconds or a minute or two is a bridgehead in more of the reality penetrating that we are doing wonderous things just staying upright and not dragging our knuckles on the ground (too much).
About leaving the house, I happen to know you do leave the house to go to your shed. And for me it didn't matter where I was because a good image of my efforts and success during my Prometheus time for duty (which sank even lower into Prometheus time for doody), is a shaking hand trying to light a bonfire with a paper match in a windstorm. Didn't work much. I found screaming shrilly at the dust bunnies and bludgeoning the teflon frying pan worked better. Sometimes you have to get your yaya's out.
I'm afraid The Queen is inbred. It has to be said. The need to keep the royal blood lines pure you know even when you mostly get dribbling idiots with big noses (oh, sorry Prince Charles I didn't see you there behind the cow, I mean Camilla). That story of Charles marrying Diana and then going back to Camilla is one I care to know nothing about. What ghastly people. It reminds me of my first job hearing that the VP of finance had left his wife and left town with his secretary. Two of the ugliest people you ever imagined and yet neither ever showed up at work again. Ow! My eyes!
Brexit is a word invented by The Economist. They're a bunch of Eton schoolboys really. Brexit is what happens when you think your protest vote won't count or more like waking up in Los Vegas with a ring on your finger and a strange looking person in your bed. Ahhh! That's not supposed to happen! It's been a Monty Python skit watching everyone shrink away from it and the EU really hasn't heard from them yet. The Economist speculated that they have to hire a staff of 10,000 people to get the endless treaties and agreements and mutual accomodations and pretty much everything completely redone.
For example at the moment Britain is automatically invited to every discussion the EU is having about it's own future and having Britain - the jilted lover who has announced they're leaving but shows no sign of moving - in those rooms is not on. It's probably not being covered as much because it's being trumped by something.
As for that mirror. It's MAW - VEL - US. Try it beat, beat, beat. Three equal weights. Now try it three beats, one beat, one beat. Mawwwww Velus. Not southern. Spanish. Squint your eyes a bit first and think of Ricardo Montalban saying Cordoba. Then ooze that out where it's impossible to overdo it. You..............look..............mawwwwwvelous. Mawvelous, I'm telling you right now. And you know. You know. It's better to look good. Than feel good. I'm telling you. On the other hand I apparently drive a Cordoba so what do I know.
Reminds me of one of my favorite scenes in films. When Harry Met Sally. Not a great movie but fun. In it there's a scene with his friend who ends up with Carrie Fisher and they're at a batting cage hitting baseballs. Billy Crystal is talking about how he's growing and he doesn't need a woman in his life when a little kid complains that they're taking too long. Billy Crystal laces into the little kid that he's going to take as long as he wants sounding about the same age as the little kid. Then he looks up at his friend and asks "what was I talking about?"
"You were growing" his friend answers deadpan. You gotta love it.
Wolf makes a lot of sense! We get swollowed up in grief and for each one the evolution of gaining strength and finding the confidence and courage to try and move on is a very individual thing. The support of family, your medical team, and friends help a great deal. I think lack of family support, however, for whatever reason makes the transition harder. With our kids, they go home to their lives and support network. What they and others don't fully realize is that unless we move, we return after every errand or appointment to the home we shared a life with with the other half of ourselves. That is why some of us may recoil still, maybe always will, to some of the really deplorable things that can be said to us regardless of the years gone by.
My real ah ha came when I got hurt 3 weeks ago. I learned that I have to rely on myself for my care. Medical or otherwise. It means trimming the sails in other areas so I can continue to afford my LTC ins and live within my budget. It also means the kids ( well 2 of them) are not going to be able to look to me for financial help.
And even though I don't get to the cemetery to visit my Ozzie as often as I would like, there is never a day I don't think of him and miss him. And keeping his clothes as the were ( over time I have given a lot away) isn't him. So I just want to keep a few of my favorite things he wore and let the rest go to those who need help.
There is a line in the movie The Shawshank Redemption that is a motto that works in situations like ours. " Get busy living or get busy dying". We only have one go at it. Our loved ones made the most of the life they had, however hard it became and within their limitations. To honor them, we should strive to the same.
I'm trying to put my money where my mouth is. I hope I can be a success at it. All I can do is try. It's all any of us can do❣
Yes, Mimi, it seems I need to learn to Trim the Sales. LTC Ins is a must have ( and it is pricey), as are other insurances. But the trip to Denver's American Girl Doll Shop with granddaughters to "Look at dolls" left me $150. shorter. Cute stuff, great time, great memories. They were very appreciative. But I no longer have piles of money for grandchildren. Some, but not like before. The problem is spending less without looking like a total failure and disappointment. Will figure it out. And as for getting sick or injured; I can't. Period. None of us can (okay, I'm still living in a transitional fantasy). But, Mimi, do hope you heal fast. So beginning to look in the mirror in the morning, smile, admire that my hair is only 15% gray (hmmm, I'll take it...), and then head to my car for some incredible adventure (library? coffee? walk by lake)? And life goes on...
Last week I joined ranks here. I know you all care and are supportive, but I didn't and don't want space taken up with condolences that I would prefer be used for information sharing. And that is just me, so no judgments either way.
DH was in a dementia facility and as he was dying I wanted him moved to a hospice home. It was a nightmare of Medicare regulations; they wanted him to stay in the unit, I realized through the double talk, because it was cheaper. After pleading with hospice for almost an entire day, I finally thought to offer to pay out of pocket (the rooms are about $220/day). No one had suggested this option and they acted like it had never been asked, but within an hour he was moved. And it turned out, after he got to hospice home they said his condition was much worse than reported by the field nurse and so he qualified after all.
Hospice home was wonderful. They immediately set about controlling his almost constant seizures and pain, turned him every two hours, assessed him for pain constantly and were kind and supportive of the family. There were family rooms, a garden to walk in, family could come and go . . .
I did not think that the dementia unit had adequate staff to care for DH, nor did they have the skills to care for someone dying. His meds were ordered PRN so I would have to keep a chart as ASK for them, doing his seizure and pain assessment myself. His room was situated so there was no comfortable place for more than one person to sit. Although I was paying for the facility and Medicare was paying for hospice it became clear that I was to be the nurse who cared for DH in this situation.
We had to be buzzed in and out of the dementia facility, a process which can take sometimes up to 20 minutes to get in or out. In the unit there was no place for the family to gather in quiet or private, and the only vending machine for drinks was located so we had to be buzzed in and out. Outside his room was the activity area so we had to keep the door locked to prevent confused residents from entering.
Dealing with all of this when one's spouse is a resident is one thing; dealing with it while one's spouse is dying is another. For me, a dementia unit is no place to die (if there are other options). If DH had been home or in the hospital, transfer to hospice home would have been easier, but being in a facility immediately invokes a whole different set of regulations whose purpose is to let the family pay for the facility while Medicare through hospice only pays for meds, bed and some help.
My words of wisdom here are to research and have a plan for palliative care at end of life and know where you want it to take place. I thought I had it all planned out but did not know about all of the Medicare stipulations on inpatients in ALFs. Beware, folks. I think I have PTSD from the terrible physical condition that DH was allowed suffer and my inability to get him the care that I wanted him to have and that he desperately needed.
marche, Thank you for letting us know about your husband's death and also thank you for your observations about why it is better for a person who is dying to be in a hospice facility than a dementia unit. As it happens, I asked this very question last week. My husband is in a locked dementia unit but his facility also has an in-house hospice unit. (I have not seen it but I've heard it is very comfortable and that the care is outstanding.) Sometimes when people in the dementia unit are dying, they stay in the unit and other times they are transferred to hospice. I asked a nurse why this was and she said that the normal procedure was to transfer them to the hospice unit but sometimes the family asks that they stay in the dementia unit. Based on what you have said, I know what choice I will make.
My sympathy to you and your children. Please continue to let us know how you are doing.
You did get him the care that he needed, Marche. It may have nearly killed you and taken far too long you but you did make it better for your DH. Take care Marche and as always, thank you for sharing your knowledge.
How sad that I can search this database of years of experience and find no reference to anyone announcing their arrival out the other side. So few expressing the freedom and joy that the weight and the oppression of those years is gone.
It's so often the same whatever the arena. What is said and believed is not what I find when I get there.
I stand on a hill and see the two cities below me. In one I take the memories of life and live in the sadness of Dianne being gone. In the other I take the sadness of Dianne being gone and live in life.
Every single site of the many dozens I read said that the worst thing you can do is deny grief because bad things will happen. I kicked grief around the room and used it as a footstool as many posts document. I deemed it unjust and there was no chink in my armor, no spot on my hull, that it could cling on to because I did not believe.
All those sites were wrong. I did not have to accept their fortellings that we must feel like victims and must anguish over what is lost. I refuse to pick up whitewash or blackwash and paint with a mop. All the pains and the horror moments and the delights and the amounts we gave each other come with me.
The costs were a fair price for the most meaningful experience of my life and I had that for 16,484 days and that is a long time to have anything. I would have more but I will not stamp my feet and refuse my life because I can't.
I would spend my remaining days by her grave. She is worthy and part of me wants that. But I don't believe in that either and so I have brought her and the deep reservoir of sadness with me. Not as a shrine. As a living memory that tags along.
Alzheimer's was a nightmare. It killed Dianne and in that same, one, real world, it damaged me greatly. If I had been more honest about those years I would have crawled through them. But that is already long over. There I have done what I said I would and it can all now lay in the peace of it's truth.
My story litters this place although it is summarized in the three page post above where the comments were I am hard to understand. I've heard that my whole life and accept that it is me.
I am free of the encumbrances I lived in that I have listed so often. Anxiety and depression, and fear of survival, or ability to live are gone. In the brief window I have before it becomes insufferable, I celebrate that. My life is here and I welcome it.
I feel for Marche who has just joined and Anchor20 who is stuck, and all, but if we are going to truly heal then we must show that such a thing is possible once we know it is.
At any rate, I've told my truth, and now that I'm here, this is no place for people going on about their lives. Struggling to have one, yes. Talking about how they're enjoying it, no.
My journey here as I was has ended because my struggle has ended and I don't feel I'm that person anymore. It's all me of course but that was Wolf under duress the entire time and while I have the memory of it, I don't think the way I did under duress and have instead discovered that when that goes the fully nuanced personality returns.
This is the hard part as I've said. Where you return to the limits of the full you and discover you want new things which can only be had by growth. It would be the hard part if I cared. But the fully nuanced me is an irreverent SOB and just as I threw the 'rules' out in the afterwards, I'm throwing them out here in my new life too.
We don't last you see. We just don't. So my salad days are right now and my best day physically was yesterday, not tomorrow. I'm not afraid. I'm focused. I've filled up my calendar for the rest of the year and every day says the same thing. Play. Play. Play. Play. Play. Play.
Try and guess what I'm going to do next.
ps - I'm not saying goodbye. I'm saying my life has changed. Therefore my role here and what I say will also change. Those are the bits about me. The main thing that I'm saying is you can come out the other side feeling whole because I do.
Wolf, I glad you're not saying goodbye because having lost Elizabeth and marge78, I could not take another defection from this site. I'm glad you feel whole now because it gives me hope. I look forward to hearing about your playful exploits now that you have come out the other side. It gives me hope.
Wolf, I can truly say that I have moved on. I'm not saying that I don't think about my 55 years of marriage to Ron, but they are mostly pleasant thoughts now. I am enjoying my life now. I have lost weight (30 lbs), walk 10,000 steps (a little over 4 miles) most days, go to the gym 3 days a week, enjoy going on cruises with friends or relatives, and generally feel good for a 79 year old lady. I don't see any love interest in the future but "never say never". I an happy with my life now and feel "the weight and oppression of those years is gone".
marche, I agree...Hospice is a Godsend. Such compassion and support. I am glad you were able to come up with a solution to get him there. Blessings to you!
One of the striking things about now is that the disparate moments feel disjointed. There isn't a single coherence.
That's mostly because for over ten years I was too occupied to think about myself or the things happening in life and so it shouldn't be that surprising or disconcerting that I have these compartments of things that don't connect into a whole.
I spent yesterday with someone new (a male) where once again the flow of conversation took on a life of it's own and by the time we got back we were having fun doing Monty Python lines and Jack Nicholson lines (sell stupid someplace else) and we worked together to remember Steve Carrell's name (the guy in that Will Ferrell movie who couldn't speak in sentences, used to be on Jon Stewart etc). I got to look around again because he drove. It was fun.
The night before my university phoned where they always want money and this time they took notes on what I'd done and what advice I might have and when I gave that advice the student said no one had ever given advice like this. So I gave some more and I did pledge but I also told him he was going to do fine in life. When he passed me to his supervisor to confirm my pledge I told her he was good and he had talked me into it. She asked if she could print my comments. Yup.
When I look at myself in real interactions afterwards I can see that I'm pretty normal. When I catch some of the thoughts going through my mind I'm far less convinced. The niggly and prickly things that I still focus on at times and my reactions to some things are still all over the map.
I'm not interested in a woman in my life I say but then I catch myself zooming in on a face or an expression or a voice and without meaning to, I'm imagining myself with that person like I'm trying on shoes in my mind. I'm lonely is an understatement, but at least I'm not lonely and married. This loneliness is real and I earned it.
The biggest causes of my disjointed life are Dianne and Alzheimer's of course, but, right behind those is the ten years where I was too busy to notice or keep up with the world changing and all the people I knew changing over a period I had virtually skipped.
Another component is that whichever section of the total chores we used to have in our partnership, we have them all now. I can't imagine learning how to cook in grief. I do know exactly what it's like to learn to do laundry in grief. Folding fitted sheets still gives me fits.
Living alone. Wide topic. I don't fill a garbage bag a week normally. But for several months now I find things to throw out. This week was an old jacket, two old dress shirts, an old watering can, the electric kettle, and a few other things. I'm steadily moving into the dump is a joke I tell myself, but, I'm really just getting rid of stuff I don't want or need and don't want to deal with later. Is that thinking normal?
There's still a huffy resentment inside that people don't reach out to me more. I've gotten that, if I want to, I can pick up the phone and talk or make plans. I still have moments where I imagine them saying they don't have time for me or don't want to. It takes real time to really get over being hurt too badly too often.
I know I need new interests and while I'm not easily bored, I don't have sustaining things which I get up to do. Some of that is retirement where everybody I know both faces that and pretends they don't. "I haven't had a chance to look at them" says the person who gets at most a dozen or so emails in a day and has all day to read them.
"Take it easy" and "relax"; those are the two things I say to myself most often these days. I've come to a point where I don't avoid AD or Dianne where they feel as much a part of me as my name does. Yesterday with that new person I hardly mentioned either just as I hardly mentioned where I'd worked. It's afterwards when I look at these things that made me put up a post a few days ago that said I was out the other side where yesterday again showed that it's so.
The best way I've put it was that I had been lugging a very heavy backpack for a long time and finally got to put it down. That doesn't solve the problems I have, but it's better. I'm finding it a lot easier in the present figuring out my future without the burdens of my past dominating me. Dianne agrees wholeheartedly. She liked me and she would be happy to see me content.
Well, it's been a very long and weary road for almost all of us. Until recently the dominant things in my outlook have been the passing of my spouse and how screwed up those thirteen years made me. Now I would like to start settling into my life in a genuine and integrated way and all of that is ahead of me because in no way am I settled into anything just because I would have no use for anti depressants anymore.
I have to agree with how messed up I am after all the years of Caregiving. Went to a Primary Physician for the first time in ages, time to get established, and my stress level was off the charts. So many memories of office visits gone bad. Will take time to rebuild again. I think it begins with recognizing the problem, then slowly moving on.
For thirteen years life has been teaching me without any let up, that it was going to keep bitch slapping me harder and harder until I abandoned thoughts of myself determining anything in my life and capitulated to the single role it gave me - to endure.
It obscures this fact to include my wife and the disease because all that is already clear and real as the very personal tragedy we did have to endure. The topic instead is the only person left after it is over and what now happens to him.
And since it is me that is here, I have a single question. Can I unlearn to endure what happens to me and relearn to determine what happens?
My rearview mirror shows all kinds of serious reasons why this has taken so much out of me and that mirror serves to remind me that the situation actually is serious. Looking anywhere but the rearview is largely undiscovered country that feels difficult to access in my soul.
Can I learn that it feels difficult to access because of the serious reasons those years brought and not because ordinary life is difficult? My tasks have almost nothing to do with the facts around me and have everything to do with bringing this beaten up hulk back to life.
I don't know, Wolf. I do think that years of enduring the effects of this nasty disease changes us in ways that are not good, maybe even killing some of our previous attributes. I suppose that if we are given enough time and the right circumstances, we might recover some of the things we have lost. But many of us will have the time or circumstances.
Go back to the basics, Wolf and just do it one day at a time. If you can find one thing to make you smile today, you are doing ok. We have lost so very much but here we still are, who would have thought??
I can see that we are changed but I can also see that we are the same. I don't believe that it's a question of maybe recovering some of the things we have lost. The real things that are lost ARE lost and can't be recovered; but, my sense of humor is me and I laugh at the same things I did before; also my reactions and opinions about the things that come to my attention are the same recognizable me.
I just stopped in to visit with as many of my past friends who still come to the site. I think of all of you often. Especially Joan, bluedaze,Jang, divvi, and many many more.
And yes, I remember Wolfe
I don't thinkI could have gone through this journey without all of my little family here. You are what kept me going. My husband passed away on December 24th 2012 and was two months into his 13th year living with this sad disease.
My thoughts are with those now living and caregiving and with those spouses now trying to pick up the pieces of their life I was 59 when my husband was diagnosed. He was stage 5 at that time and lived over 12 years after diagnoses. Yes I looked in the mirror and time had passed me by. I was OLD and wondered how in the world it happened
Gourdchipper thank you for asking although I have to say not very much. I volunteer sometime with our local VA hospital and it does help with the lonely feelings but almost 4 years have now passed since I lost my husband and the grief is still very great
We have only one child and one year after I lost my husband my daughter was diagnosed with stage 3 breast cancer soi began another journey. She is doing good at this time so all is fine
I am trying to make up for lost time doing as much as I can on my so called bucket list as I have witnessed so much with this sad Alzheimer's disease.
When a spouse has this disease it takes both of you with it. The disease wins in the end and if I only knew then what I know now I would have not tried so hard to make him remember things that he could not
I remember trying so hard to help him remember how to tell time, how to write his name, how to learn all the things he had forgotten just trying not to let him go.
This forum was the most helpful to me. I still talk to two of the ladies I met way back then. We talk often on the phone still to this very day. There is a bond like no other when you have gone through this disease together.
As for divvi, yes I remember she called herself the queen of poop. I think of her often and wonder if she ever stops by
This was written in 2013 I was describing this site to a friend. I came across it when deleting old mail:
My posts ranged from the depths of depression this disease invariably affects all caregivers at one time or another, the descriptive horrors and tortuous existence of my DWs end stage when even Hospice couldn't control her agony, to the death of the love my life, passing with her hand in mine. Then on to grieving, counseling and somehow, attributable to luck, fate, and good advice I was able to start life anew all in within one year! The resilience of the human psyche is incredible.
Tomorrow is my birthday. The special lady in my life has the whole day planned out. From breakfast in bed, an exercise session, a spa tub soak, a masseuse. cooking my favorite meal served with my favorite wine etc all of life's sensual pleasures being catered too. It's been so long since I been able to think in terms of someone caring about my happiness, I will admit, it's a bit overwhelming, almost embarrassing
For all still traveling the Alzheimer's journey know that there is a life to had after what we've all gone thru. Just seek it and permit it to happen! I consider every day of my life today a reward for all the past sacrifices I chose to make and it's been a fair exchange !!
I've written reams trying to understand. I write about it almost every day because the whole point of being what I called my own experiment was to learn about what and how things happen. I can't post them because there is no topic here about this and that makes perfect sense because what I'm going through has very little to do with Alzheimer's. I have to accept that I got what I wanted but learned little that isn't already known. I'm talking about afterwards as we call it because about caregiving I know absolutely nothing. Endure. That's it.
Yesterday I wrote about my dream the night before where Dianne bought a bunch of things at a market that looked like it was in Amsterdam. I had watched a couple of hours of some guy on a walking tour through Amsterdam so I'm not surprised. We left all those bags and walked off together which is when I woke up.
This morning I woke up from another dream where Dianne and I were in bed together (and I was back on the left side of the bed where I spent most of my life). We heard a noise and I got out of bed and went downstairs to check. All the lights were on down there but half way up the stairs already was a female lion. I realized I was dreaming and went back to sleep except I was still in the dream because the next instant we woke up again because we heard a noise and this time there were two cans of Coke on my side of the bed. One on the night table and one on it's side on the bed (unopened). That was impossible because we never took anything like that to bed ever. I struggled to get up but I couldn't and I thought to myself in my dream "use your old man strength" and I struggled harder and this time I woke up.
I had been trying to get the blankets off as though I was on the left side of the bed but I was on the right side now and the real me must have been struggling to get out of the wrong side of the queen sized bed.
I lay there in my real world in the dark shaking my head. I had long ago decided that I would welcome her back in my dreams and was laying here just the night before thinking how that was true with the Amsterdam dream and now there was no doubt that my mind was fine with playing these games. All my dreams have the nonsensical in them going all the way back. I wrote a book for a friend years ago where I wrote down my dreams for a year and then sent them to my friend who never remembered his dreams. There were over 300 because I often remember parts of more than one dream. That is I did until Alzheimer's. Then I went through years without remembering a single one and never noticed that happened until 'afterwards'. They are gradually coming back now which makes sense on some level.
My kitchen looks like the back of a busy restaurant. Stacks of dishes and cutlery (all rinsed) and stacks of pots and pans (all rinsed). Today I will likely do them all and load the dishwasher but I might not. It's not important to me these days. If my whole house was going backwards I would be concerned but my laundry hamper is empty, my sheets are fresh, my bathroom is clean, and my rugs and floors desperately need me to care. I still haven't bought a vacumn cleaner and occasionally use the taped up, wheel off, tired old thing with a bag that has been emptied so often, it holds together on faith where I likely have more sucking power than it does. I should buy a new one which has been true for years and I'm planning to care more about that down the road.
I still have a short list of things I really should get done. I'm still avoiding all the 'should's' and I don't know why. I got a lot done a couple of months ago and then I stopped again. It's not as important to me to be up to date as it is to keep settling in emotionally. I've had a fair number of people telling me I need to get 'out there' again but that's pointless activity and not well thought out to be honest. What does it matter that the person who can't bear the life they're in is well exercised?
When you do things that engage you and take your mind off of pain that's a good thing but it's pointless unless you plan to do that for years. You're treating the symptom not the cause.
In my world everything depends on what goals I have - and whether by the word goals I mean hopes and dreams or what I can demonstrate I'm working at. My goals were never to survive which all my posts show. My goal is to not struggle with my past which I've noticed is more dibilitating than an iron lung. Well, that's a lot of work because I can't snap my fingers or digest those years wholesale. It's every last frigging detail I have to own and that's why in so many posts I complained about how absurdly tired I was.
I should have picked up that call on our anniversary date but I heard in the message I was right that she was pre-saddened by her husband dying almost four years ago and wanted to commiserate. "They're dead", I wanted to say, "Accept it. Get over it. And move on." I doubt that would have been very helpful. How do I know I've done that? When I don't get torqued out that what happened, happened anymore. When I've changed enough that I have peace inside about...whatever it is I'm trying to get over.
I'll tell you what I know. My sister is less unhappy now that she can celebrate mom's life with me in more genuine ways and not just be stuck by her death going through the boxes of her things 'smelling' her. I pushed her steadily these last years and she was finally able to let mom be. Now I can tell stories about mom because she can enjoy them and even laugh. Why would I stop loving mom just because she's dead?
My best friend listens to these things and welcomes the good things. He clings to them desperately hoping they will hold him up. They never do forever because that's not what's real. What's real is that he believes something about himself he can't let go of or resolve inside and so is stuck between periods of fantasy and periods of reality.
"Accepting something happened means getting over it. Accepting doesn't mean anything else. Not accepting what happens means we're stuck by it and that means internal wrestling which isn't the same experience as making genuine peace. Making genuine peace inside requires equally genuine work if we set and live by the goal of earning it." - Wolf Krause
All of my years here related to afterwards are distilled into that one paragraph.
After I sang Happy Birthday to my lawyer friend who was born on the exact same day as Dianne, he said it was too bad Dianne wasn't here. "That's true and nice of you to say", I answered, "But they're not here anymore and we are and that's worth celebrating."
I would never have chosen this but qualifiers like that are ridiculous. I would have chosen a rich womb as I've said many times and never would have been this person, the son of two immigrants wading into the new world without a clue. I'm lucky I was never offered a choice and I did well by the loving (and weird) parents I had. Dianne and I never had a plan either except to live our lives and I feel lucky there too.
Now I have a third so-called life and like the first one, I don't have to do anything in this one. I have a list of things I should do but I've talked about that. I was a millionaire once (well, we were together) but I squandered that because I'm really smart. Dianne didn't care about money as long as there was enough. "Are you ok?" was all she said when I told her I lost most of our money. We had to sell the 'big house' though and move out into a less expensive area which was when Alzheimer's unleashed and all of that is spread in the annals of Joan's board here. I'm lucky I have just enough. That's because of Dianne.
It's not great around here but it's mine. What's great is that I feel like I'm here again on the other side and I would be grateful but that would be self serving. I would whoop it up and plant my flag but I haven't arrived anywhere. I dumped the crap and kept Dianne. What I do with this remains undiscovered country. Nice country though I'm noticing. Not the same as peace inside which when you're a short lived, sentient being is the motherlode.
warning - I am insane. Don't try this at home. Results may vary. Not applicable in some states.
Well said Wolf. I have pretty much given up looking back. I know I did the absolute best I could given the extreme fear, anxiety, and grief I was under. I have come to realize that I will have good and not so good days and to justified out the not so good ones. I recently made the decision to get my condo painted. Somehow just the task of picking colors was actually enjoyable. Just learned 2 weeks ago my dear mother has cancer and is on hospice. She is ready to go at 94 and will,pass in her own bed. I can only hope for the same for me. Somehow having gone through the Alz journey makes this a bit easier. The big difference is she has her mind and will not need to be placed and I am not the power of attorney. Makes all the difference.
Hi CO2. Thanks. I don't look back much anymore either. I think I drained that swamp except a few things that still nag or hang on. I'm sorry about your mother and hope she passes in her time in her sleep in her bed - just like we will.
I've never looked for my own future before. What I've always done is look at my situation and make a decision. The situations felt like they found me. As a teenager I thought I might become an artist or a marine biologist. I did neither. I spent my high school years being in love with one girl who I never even went out with. I never went into the world with a plan or even an idea. Instead I fell in love with Dianne and went to college because it was expected. When I married Dianne it was because I wanted to be with her not because we had a clue. Once I did we needed a place to live and off we went. When I needed a job I found one. We never chose our friends. We fell into them.
I talked about undiscovered country and here it is: I'm 66, in a new life, and have zero experience or idea of understanding what I want for myself in the future. That has literally never come up before in all my time and the only thing I know about that is I know nothing about it.
I've got some things that work. I like myself fine and I can work with myself and even talk to myself in meaningful ways. I understand that I've paid my dues and I see these years as bonus years where getting older isn't particularly great for anyone but everyone shares that. Those are decisions about situations though - not plans about what I want.
What I want has never been an issue before and certainly has never been so important as now. I don't have endless unsatisfiable needs, I don't care about display, I don't get off on owning stuff, and I'm comfortable that there is a level of sufficiency. Those aspects are going to pay off in reaching a zone I can operate well enough in. They're not exactly real meaning though.
It's made me realize my meaning really was going through life with Dianne. I would have had that if I died first but it was Dianne who was married and had me all her life. I get these 'bonus' years. It's also made me realize that life has stopped coming at me the way it did. That's because of my age when I find myself here. At 66 there is no job or relationship or clock ticking that I have any 'must do's' whatsoever. When I pay my bills and eat, another month slips by.
That's one of the stranger things about now. When I look backwards it all makes sense and tells the stories but when I look forwards it's almost a completely different planet. It's not that inviting to wrap my head around the idea of where I am in life where I'm not growing into anything much these days and my best physical year is likely this year; but, if I don't find a way to wrap my head around choosing deeper meanings (where I first have to understand what those are), I will have chosen my path regardless. This isn't an endless window.
It's as interesting as it is important and I find I arrive in the same condition as always which is completely stupid. Resolution of one thing has always marked the arrival of another thing. There is only an arrival level at my airport where I've never needed a departure level because those just disappear. And the next thing has now arrived.
I'm stuck in this unless I change it, and if I'm going to change it, it would be good to know what I want. But I don't. I couldn't answer that to my parents, I couldn't to my guidance councellor in high school, I couldn't (honestly) in my job interviews, and I can't now either.
I remember feeling that way when I was in my early 60's, even before Alzheimer's entered the picture. Volunteering seemed to be the the answer for me. It gave me a purpose; it got me out with interesting and wonderful people; the feedback was positive. You certainly have many gifts to offer. Any organization would be lucky to get you. Volunteer opportunities are varied and many, and you could find one that would give you back even more than you give.