Hi myrtle, my Raptors slipped into first place in the east last night without playing when Indiana beat the Boston Celtics. My relationship with the Raptors may be an accessible metaphor for everything else we talk about.
I've been in a nasty mood for about two years now. I believe it is a form of backlash from when I couldn't afford to be anything resembling or feeling like a human being. My issues go deeper in that everywhere (friends and family) when I DID try to act normal and talk about AD, I got torched and was abandoned. I know how Lepers felt. There's a long, long string of issues where I went back in my own mind and after the shrill and hysteria died down enough, I ripped through those issues until I had killed the echoes of what was said and done.
That was a long lineup of actual things that happened mostly centered around me no longer willing to be the victim - which is good because I'm long out of people I care enough about to remotely be willing to be such a victim again. Within that lies my resolute unwillingness to remember her damaged without being labelled. Those are memories of what it did to her. They are useless in describing her and are their own false positives in remembering her.
One of the many reality transformations x-caregivers face is the reversal of the commitment not to care about ourselves whatever we feel or face to keep going. Caregivers have to do that while in one of their weakest states; otherwise, they remain in victim mentality without function. Almost no one recognizes or admits this - as though not having conscious realization of a thing means there must not be a thing.
To demonstrate what I mean, I sometimes ask in a religious discussion whether the person thinks Hindu beliefs apply to them. Of course not they protest. Then I ask the person if they think last judgement day applies to Hindus and they get mad because Hinduism is just a funny word but their beliefs are serious.
Transforming from a victimized widower to a male living single requires barrier breaking redefinition of fundamentalism. Surviving widowerhood as a widower requires nothing more from me than to get through the days until they stop. Those are two very different things which only look similar from the outside but define what is going on inside.
I've never done anything harder, more serious, more complicated, and less understandable in my life. I wrote here how indescribably tired I got of it all. I never felt hope or desire or faith that I might succeed but guile that I would survive my hated everything was resolute. That just kept me going. It was the labour of love, kindness, and endless patience that mattered. Getting the little puppy out alive and whole is still paramount to this day - even when all that garbage flying around at once has long been recycled or absorbed into the earth.
My only real advice to anyone wishing to change is that they're almost certainly confusing wrestling in life du jour with the fundamental and foundational requirements that produce core change. It's analogous to the overweight and the smokers who cast some thoughts out about what they think about that and come away knowing they're taking it seriously. I require no dementia to go around the compass of everyone I know and read about and watch who speak about change but can't show their work because it's commentary while they're up to their neck wrestling with life du jour. I wish every single one of them well. I know how that is.
I said my relationship with the Raptors may be an accessible metaphor. I'm a fan. That means I get caught up when I watch them play. It took time to realize that meant I cared about something. I wanted more and learned I can watch other teams play and see the game differently. I learned that knowing more about those teams gave me more context and felt like more involvement. I started paying more attention to the theatre including the media pundits and the general manager's role and drafting and trade rules and it all seemed to enrich my long familiarity with basketball. I used to be a hockey fan. I became a Raptors fan while Dianne had Alzheimer's. Now I can see anyone on any team and it's 98% that I will know who it is and some of their history. My poor mother couldn't tell one black person from another. I don't even see that anymore and have no issues whatever recognizing one of the families to which I richly belong.
Both Dianne and Dianne with Alzheimers are rich in stories about my life. Just as her wingnut parents are. Not were - are. Their stories ARE a rich part of my life. The fact that they're long dead is inconsequential to their continuing role as the stories of my life.
So is Cora Lee Nichols. She lent me her fancy pencil case in grade two and then a few days later let me know she didn't like me chumming around with one of the other girls the way I was. I gave her the pencil case back and told her I should never have accepted it and that didn't mean she owned me. I felt used and frankly like a whore. I had taken the shiny thing as my due without consequence. Life isn't like that I found out. I was in love with Louise who was in that same class as Cora Lee. I didn't give a flying about Cora Lee. I took the case though and that's the reason I got into that conflict. Nothing to do with poor Cora Lee.
Remembering the Cora Lee incident is life du jour. Understanding the lesson is fundamentalism.
Today is my 70th birthday and I woke up crying. After a bit of self-analysis, I realized that I see this day this as marking the end of the decade that was lost to Alzheimer's. What I'm mourning is that as a result of this disease, I'm a physical and emotional wreck and that my husband is not here to take care of me. He was clueless when it came to birthdays, etc., but before lost his mind to Alzheimer's, he took loving care of me every single day we were together. So I'm feeling sorry for myself. But I'm not going to apologize for the self-pity. I'm just going to wallow in it for a while. "It's my [birthday] and I'll cry if I want to. . . You would cry too if it happened to you."
Congratulations on your birthday, dear Myrtle. I'd take you out for dinner if I lived closer to you. Seventy is quite young (says she who'll be 88 on the 20th). You've many good years ahead of you. Hope to enjoy some of them with you.
It takes a while, but I think you'll find that you get very good at taking care of yourself...and building networks of support and back-up. Hang in there.
Happy Birthday Myrtle. Enjoy it. One of my gransons birthday is Feb 12th too., his 24th. wish i could be 70 again, Ride my kabota and round up cows. No longsr can do that. AD took that away.
The 70's, remember the music, now you can make some new moves your self.
Happy Birthday Myrtle!! I'm still in the fight but I remember my DH taking care of me too. He doesn't know how to do that anymore but I remember how it made me feel, so I can relate. Others who know better than me are also letting you know things can get better. I hope you did something that makes you happy today. Even if it was just a walk, watching a movie or just sipping on a nice cup of coffee. :)
Well, thanks, everyone. Your messages really helped and I feel a lot better. Two friends emailed me that they're coming into town to take me to lunch on Wednesday and my sister wants to meet for dinner later this week. So I guess it's a good thing I got this out of my system today.
Happy birthday Myrtle. Hope you have a nice day & glad to hear friends are taking care of you & sharing your birthday.
My birthday is also this month & it will be the first time in 45 years that he's not in the house with me. I'll visit him at the facility & even if I tell him I know he won't really know.
I had a strange experience today. I haven't used the car hardly at all these years and in the winter I'm only making short hops. Today my battery wouldn't turn over. I hadn't driven it in a couple of weeks and it could hardly turn over at all.
In an instant I jumped back to my 'everythings going wrong' disbelief and felt that panic/anxiety Alzheimer's caregiving gave me. I slumped over the wheel feeling the dreadful alone-ness I've known so well and which still clings around all the edges.
I came in strongly reminded of the insulation I live in which seemed necessary in the early afterward years, but have for part of a year now been revealed as my own barriers. I'm scared deep down to get hurt too much too soon because in all truthfullness I don't think I escaped more serious damage by more than the skin of my teeth. I was broken/kaput in every sense of that there is and when something unforseen slaps me hard in the face, I can jump right back into Klingon mode.
But I phoned my next door neighbour whom I haven't seen hide nor hair of for well over a month and I know he's trying to find a job and is depressed, but I phoned an left a message that I could use some help. Minutes later he called me back and said he'd be over in half an hour.
Let me explain. Half an hour means there's half a chance in two hours. I learned quickly with him to stop checking at the window because I was just getting exercise. Sure enough two hours later he phoned to say it would still be a while and then explained he and Tomato lady were putting his resume together - so we talked about that.
Two hours later Tomato lady phoned to see if I had a computer. She needed to use word and I have that. I don't let anyone touch my computer. I said yes and the minute I did I had an unbelievable reaction. "We'll be right over", she said. About an hour later she called again and said she was coming. Half an hour after that she was at my door and I let her know that she was not to use any other programs or even save. I would do that for her because I was extremely fussy about my PC. No sign of my neighbour who was going to help me.
To recap, I had phoned him at 10:30 am. It was now 3:30 pm and I was hosting Tomato lady who chattered all the way through but was fortunately obviously very comfortable on the keyboard. A bit later Tom showed up and we hooked up his battery charger to my car. We went inside and I heard his long tangled story about what he'd all been through and that he was hiring a lawyer for wrongful dismissal. It sounded like he has a case.
A couple of times tomato lady came down to be reminded of what they agreed to say despite her notes. We went through some of the wording together and he asked me to be a reference. We talked about the prospect he has at the company he's applying to. Soon enough she was finished and I saved it for her and attached it to an email and sent it to him, her, and the neighbour across the street who has a good printer.
By then, my battery had about an hour of charging and I started it up. While I let it idle for a few minutes, I remember that I also own a battery charger and even know where it is in the basement. When we were alone because Patti (tomato lady) was putting her boots on, I told him I saw the eyes rolling but that he was actually lucky and pointed at myself. He nodded and unplugged his charger. They waved walking back next door.
While we sat in the kitchen talking, I sat where I never sit and noticed things I never notice. "Look, I'm part of the community", I joked to myself after I had this wave of disbelief that they would ever leave. Listening to either of them is like standing in front of a fire hose of stream of consciousness hoping some of the bits form some kind of narrative.
As the garage door set I smiled at myself that that was exhausting, but I'm not alone out here. I'm surrounded by other wingnuts and I fit right in. I really did feel that bite of being so alone in everything. I really did feel that panic. I really did reach out and along with the battery boost I needed, got to rent a family for the day. And then I got to give them back. And when that garage door shut, it wasn't a lonely world. It was wonderfully peaceful.
I woke up this morning and remembered I've been through something like this before.
When I was 17, half way through grade 12 (1-8 was public school, 9-13 was high school, and 3 years for a basic bacelor), the catholic school board decided to build where our house was and expropriated us. Mom and dad bought a new house many miles away from the Toronto street I grew up on.
It was a nice house up from semi-detached but had no trees because it was a new suburban development. Going there was like my alzheimer experience because that one thing pushed me way out of my normal life into something completely alien.
Want to come over and play? Sure. I'll take the Kipling bus from one end of it's run down to the subway, take the subway over to Jane street, and take the Jane street bus up to the old neighbourhood. I'll be right there.
That's exactly what I had to do every morning and every night just to finish grade 12. I spent three hours on buses and subways every day to complete that year and was told I had to transfer to the local high school to finish grade 13. Except Dick Aldridge, a local sports hero in the CFL (Canadian Football League) was the senior basketball coach and he knew I didn't want to switch high schools in my last year, pulled some strings and got me exempted. I'll never forget his phone call telling me I was going to play for him.
So, when I exchanged valentines with Dianne on Feb 14 1969 both in grade 13, the only reason that had a chance of happening was because I was travelling 3 hours a day to play basketball because my coach wanted me on his team and took steps himself to make that possible.
That summer between grade 12 and 13 felt like this. DIsconnected, alienated, a fish out of water, and powerless to change anything I faced. Until I got that phone call asking if I wanted to finish high school in my old world. YES!!!!
Thus Dianne, thus Alzheimers, and all the rest. She died tomorrow three years ago which I think is why I remembered this now. It was all well worth it. That summer dad bought me an old car he fixed up so I could get to university and getting around improved immeasurably.
Wolf, My condolences on the third anniversary of Diane's death. I hope you'll be able to get out a little more frequently in the coming year, if for no other reason than the fact that your car clearly needs it.
I can hardly believe it's been almost a year for me. The time has seemed to go by like a flash but my own life has not progressed much at all. I seem stuck back in the time when it all happened. His picture is still on the fireplace mantle next to the folded-up flag and a lot of his clothes are still in the closet. Yet I see others on this board moving ahead with their lives, traveling, moving to different areas, etc.
Wolf, congratulations on reaching this milestone. It will be 3years for me in May of this year. As I tell everyone who asks how I am, I tell them some days are better than others. Myrtle, it sounds like you are exactly where yiou need to be in your grieving journey. Every persons story and journey is different and unique to them. The first year I was pretty much numb and stayed in my house— it was hard to go the family gatherings and I pretty much did not want to be around people. you may want to check out bereavement groups in your area. I attended a 5 week group the fall after he passed through hospice and a 6 week group the following spring through my church. They helped immensely. Just being around people who understood what I was going though was just what I needed. Also being in a bereavement group is a place where you have permission to share your pain. What they did for me was unlock my heart as I felt frozen on the inside. This in turn helped me to move on. God bless
That's what I might call year four. I've never named a particular year but this seems like a good place to start.
Thanks Myrtle, but as CO2 implies, it's more like a milestone story about my life and doesn't have any residual remorse because it's been bereaved out over enough time. I have her framed picture up in my bedroom and my fridge is plastered with pictures of us. Her remains are in the living room in that urn. Thoughts and memories tend to be of the real her without disease and that period of disease has been meticulously plastered with asterisks. I don't dwell there by conscious choice and I take no meaning from that period except our fight together through it.
I have faced the reality of my situation somehow over these last two years where my first year was a lot like CO2's. I know I have, because I have no residual concerns about my life coming from a state where I had little but residual concerns. I know what getting up in the morning feeling natural inside is because I've even passed the period where I noticed I was doing that and just accept it. I don't think of myself in terms of anything except being here now and figuring my life out.
One interesting part of that was when depression split in two like a cell dividing, revealing the differentiation between depression and depressing. It answered the dichotomy of feeling a lot better but rarely good. In simple terms, it feels good that depression seems to have evaporated but it's still depressing because being faced with putting Humpty Dumpty together again by starting over late in life alone is depressing - and that's not a mood thing, it's inherent in the reality of those facts.
I wondered about that for quite a while. Feeling better and better leads to feeling good, right?? No. It signals that bereavement and healing are progressing which is very important but doesn't affect the fact that the reality on hand is a depressing one.
I have some people around me still who continue to comment that I'm not moving forward because there are no visible signs of travelling or moving or new relationships or romance. I understand that just as I understand that some people hate to be alone and so they must form new relationships.
That reminds me of a joke I wrote once where the person is on the phone saying "Have you heard? Wolf passed away." And the other person says "Oh that's terrible. Well, he did smoke." And the first person answers "I know. But he was eaten by a shark."
I'm happy. How many people have said that? I have my boundless curiosity, and endless energy to satisfy that, back. I've never been happy the way some people seem to be. When I feel like myself throughout it's all in harmony and for me, that's both as good as it gets and more than enough.
For me, it has been 8 years now. My mind says "how can it be???" I've been through the dark days when I couldn't move, not really, and when I did, I moved with great effort even though I was only 47. How can it be that I was only 47??? I felt far older then than I do now. Through those long hard years with Mike, it was like a living torture, like the idea of being cut by a thousand knives would have been so much easier. I remember odd times when "I" thought I shouldn't be hurting or down or depressed, but "I" didn't get a vote. I tried to talk with people and it was like I had learned a whole new language of grief and loss, one so few (you) understood. I made it through the days when even seeing my grandkids couldn't get my happiness meter to move above zero (truth be told, I am sure my meter was in the negative zone so far that there isn't a number). I remember ever so well those days and weeks and months just going through the motions. I was never suicidal, but I was not going to complain if God decided to take me. I saw no purpose in my continued existence and it seemed that my kids didn't appear to miss their Dad very much so they likely wouldn't miss me either. Such silly, sad silly thoughts. Of course, they missed and still miss him; they just express it differently.
I remember those months and years of coming alive, of forcing myself to "get out of the house" and "go have fun." I didn't feel it, not often, and more often, I would break down inside. Once, when a particularly sad song (Neon Moon ... when you lose your one and only) came on, I actually bolted from the building, going who knows where ... I ran into a fence and just had to stop and cry and cry and cry. I could not understand why I am still here or what I am supposed to do with this life. All of the future plans we had made, none would ever come true ... how could I live through that life that would not be?
I continued to try, often despite my general lack of desire to try. Eventually, I don't know when it happened, I started to actually enjoy going out ... some and then some more. Eventually, I started to feel joy when I got to spend time with my grandkids. Eventually, I even started to date. At first, that was horrible because I wasn't well and I didn't attract well people.
But now, I am alive and I am happy or capable of being happy most of the time. That, my friends, is a miracle!
Sharan, It's awful to think that you were so young when your husband died, and probably much younger when he was stricken. Your passage from grief to having the capacity for happiness is inspiring.
Sharan - What a well written post. I was not as young as you were when the nightmare began - I was in my early 60's, but when I read your post I said OMG, that's exactly how I've felt & still feel - especially when you said "I was never suicidal, but I was not going to complain if God decided to take me". That feeling was very strong a few years ago - it's still there, but to a lesser degree. My husband hasn't passed away, he's in a long-term care facility, so I'm still struggling emotionally. I've also felt the grand kids couldn't make me happy - made me feel so sad & guilty, since we moved to be near them. I was just wondering if you took antidepressants during those dark times?
I'm so happy to hear you're feeling much better now - you certainly deserve to be happy - it gives us all hope... I know we've all heard it gets better, but I think the more we hear it, the better we feel - well for me anyway.
sharan, one of the best posts I have read here and from someone who has been there. It is coming up 3 years and wonder why I still feel conflicted feelings around my grandchildren. Happy to know I am not crazy. I still have a ways to go. God bless
I was not going to post anymore, but I have to say that these comments couldn't have come at a better time. I am 18 months a widow and cannot motivate myself to do anything and I have similar conflicting feelings about my grandchildren. I don't want the responsibility of being responsible for them for even one hour. I am so fearful of having to be responsible for another soul, yet again. . . be it watching grandchildren, having a child develop an illness, or having to take in an adult child. Every activity that I thought I would eventually have time for now seems pointless. Dust to dust. so why do it? Sharan* I can only hope that what happened to you. . . is a possibility.
marche, Like you, I thought about not posting but I continued to read the posts. I have just about come to the conclusion that the kind folks on this board are my only real friends. Everyone else moved on in their lives while I remained frozen in agony. It has been 17 months of being a widow for me. I was going strong for the first 6 months in the after but then I just stopped. Can't get motivated to do much of anything. We really are a small blip on earth. In another post Elizabeth said it was okay to flitter if we choose and that helped me. At age 70 I feel like all my caregiving abilities have been used up. I will just flit along in life and hope that I someday have an uplifting story to tell like Sharan* has. Until that happens I shall just mosey along one day at a time and keep hoping. Take care.
It dawned on me that I can now post on this thread because I am a widow now too. My experience with grief is so different and I feel like I am not like everyone else. I loved my husband with all my heart and we had a good relationship and it was torture to watch him just wither away in front of me everyday and not be able to do anything about it. I am sad and I miss him, but I've missed him for more than 3 years because "he" hasn't been here, just the shell of him. Hos power of speech left him very early so it was only the first year or so that you could even have any sort of conversation with him. Thankfully his journey (if one can really call it that, since it's really more like a prison sentence) lasted 5 1/2 before he died on 3/15. I can't cry, I've only cried a little. I cried a few times during the disease stage, but I'm not typically a big crier. I don't feel normal with my grief because all I feel is numb. Like I'm devoid of feeling anything when it comes to him and grieving. My children and my grandchildren do bring me joy and I like to be around them. I was very depressed while going through these last 2 years. My doctor increased my depression medication a couple times so I could function and get out of bed so I could go to work, since I was carrying the load. Has all that medicine made me numb? Am I in denial? But I know he is gone. I've had his funeral service. I have his death certificate. I have his cremated remains in an urn and we will put his remains in a niche at the cemetery where his parents are buried on Saturday. I feel like maybe it's all been stuffed down for so long maybe it's never going to come out. Is it self preservation? Is it my need to stay in control because I've always had to? I don't know. I did take time off work after he died. I only recently went back to work. Leading up to the funeral was all the planning that just caused me to have a migraine for a week and a half. Then I just wanted to get away from all people. People coming up to me constantly to say "I'm sorry for your loss". While I know they were being supportive, I was just sick of hearing it and wanted to crawl into my bed and escape. Sometimes I still do. i'm forced to go to work, as I'm too young to retire and not enough money either. I don't know. Maybe this is all part of it for me. I just don't know. I know I have a long history of keeping my emotions to myself. He was my outlet and he's gone. My friends can only help so much because their husbands are still here. This place is somewhere where people understand, but I seem like I'm handling or experiencing it so differently. Maybe I've just turned to stone.
About 18 months later I could relate to everything marche and AliM said. That's just about where I started noticing that things were slowly changing which for the next year was almost equal amounts of relief that I could see the long oppression was easing replaced by an increasing sense of unwanted reality emerging of where and what I was.
With Sass, I can relate to a great deal of what she said. I loved my wife with all my heart. We had a good relationship and it was torture to watch her wither away in front of me and not be able to do anything about it. I also had more of a numb reaction to grief and I didn't cry a lot either. It was very much like being devoid of feeling anything and instead navigating through events like a tourist in my own skin. I can relate to all of that and I didn't turn into stone.
In fact, my stay in widowhood was hard earned I believe in my own way. It was transitional because I believe fundamentally that this part was always about facing the very real damage and heartache that was itself hard earned, with the conviction that I needed my own help and understanding to keep me going, and that I had to work with the issues and the whole thing patiently.
I knew I had to do that because I wanted this life I actually hated if only out of guile, and then came to learn that the final scene of this act of love was that I become OK with the price and embrace the opportunity to have this time - even without any feelings for it inside or real ideas about what it might be. I wanted peace inside and that was only over there.
It helped me to be patient and stay on the road of going ahead without a shred of hope or thought of anything - purely to keep going. It helped me to recognize milestones and markers where something improved or was less bad. I learned that I was getting better when my sister commented I wasn't trying to get away so much and was speaking in complete sentences. That page is mussed because I had to go back often to remind myself that she said that. A lot of things get swallowed up in years of near desperate survival and it takes time for them to come back. It took me years to feel like myself again.
The biggest transitions were when I could actually feel I was less under strain and that things were gradually becoming less burdened. That gave me hope. Another big transition was when I realized I felt that I was more fully here and not back there, where 'back there' had lost it's power over me. Another transition was to accept that it's me that builds this - it all comes from inside me, and that it takes effort to change and to open and to relearn to enjoy myself.
The best thing I think I did was not get ahead of myself. I'm exhausted. I've been 13 years so far going into that vortex and coming back out and I am still settling down and moving in.
My widow friend took four years to get to that neutral point. I took about three years. It's not a race although it feels like a marathon. When you pass the neutral point you still remember everything and you still refer to it and you're not suddenly happy although you're far more capable of having happier times. The real evidence that you're past the neutral point is that you're not talking and thinking about having a life - you're engaged trying to have it and build on it.
When we stop and think about it, the years ahead are just years. It's in the rear view that all the wreckage and pain occurred. Moving into this part was the hardest for me where those years start from a deep hole and move into what we least wanted - to lose so much and have to keep going towards starting over later in life. Respect for my own situation came from keeping that truth front and center. It's only in my fourth year that I can not only feel that I've come out the other side, but that I'm starting to have more real and deeper feelings.
I don't believe there are any tips. Everybody is so different and means such different things with the same words that every size is a custom size. I do think you have to want it. And I think the more we can be patient that such serious life events need their time to process, the less we are agitated without explanation as to why things are the way they are right now.
Confidence left. Optimism left. Tenderness left. Felt empathy left. Laughing out loud left. Expansive thoughts left. It's only when these stragglers started showing up again that I gained a deep respect for what this disease truly cost us.
Sass, my heart goes out to you. Believe me the numbness you experience is very normal. my priest told me I had lost half my heart and the other half has to grow back. That takes time. Someone told me the first year just focus on eating, sleeping and talking. I worked from home while he was ill and still do. For me it is a diversion and helped me to have a routine. May 3 will be 3 years and it still hurts but not as bad. When the grief comes I know what it is and realize it will lift. I still,am dealing with conflicted feelings about my grandchildren and am hoping that will lift in time. Just remember u r never alone and we understand.
MY wife die from Alzheimer's disease 1/25/2018. I am having trouble coping. I have a therapist, psychiatrist, meds, grief groups, but nothing seems to help but I am too often alone in my small place. I have recurring bouts of anxiety, depression, and exhaustion. I don't know how to handle it. I never know what I will wake up feeling like. I wonder if I will ever have a "normal" life, or something like it again. We were married forty five years. thomp360
One day at a time, thomp360--breathe deep and just take it one day at a time. Every day will be a little different, but you will get your life back, and the joy of having had your wife for those 45 years. It just takes the time it takes--there is no formula--just keep putting one foot in front of the other on the journey down the path. The fog and mists will gradually start to lift.
thomp360, what are you using as a measuring tool to rediscover "normal"? It will never be like it was. It will be A NEW changing normal. You can decide how that will be. No one will give it to you. I will have 56 years logged in our journy next month. norman now for my wife and I is different, really different than the normal a year ago. It is just the way it is.
Thomp360 - I'm so sorry for your loss. I can't give you any advice since my husband is still in long term care, but there are others here who can help you. I hope you can find some peace soon.
thomp360, Your life, at this early stage since losing your dear wife, is normal. My husband died on 11-15-16. We had been married for 50 years. I felt extreme sadness and was so lonely for several months. For others it takes longer. I now feel at peace that he is no longer here and no longer suffering. I still feel sad occasionally but not often. I don't think our spouses would want us to be sad and depressed. Anyone that goes through being a caregiver to a spouse with Alzheimers deserves the peace of mind in knowing we did all we could do. I hope in the not to distant future you will be able to come here and drop us a line about doing something you enjoyed. Until then drop in as often as you like to tell us whatever is on your mind. We have been there so we do understand. I hope tomorrow you can hear the birds singing. We care.
Thomp360, My thoughts and prayers are with you for the loss of your wife and for your grief. Give yourself permission to just experience it. It is real. Give yourself permission to have no expectations for a while. Then maybe start making plans. For myself I called making plans "throwing an anchor into the future". I'd make plans that required follow thru. Eventually I've found the pain begin to release. But in the beginning, and you are in the beginning give yourself a period of time without expectations of yourself. Take good care, and like AliM says do touch bases with us. This is a most supportive community that really does care. So you are not alone.
In these parts, the time to prune the roses is when the forsythia blooms. Yesterday I checked my old garden journals to see if the forsythia are blooming late this year. (They are not.) I found this entry in the 1996 book: "Paul's birthday. His wish - to UMass library for research on Mussolini paper, then to Joe's Cafe for pizza." That is so typical of the life we led.
Myrtle, Forsythia just came in bloom these past few days. Your memory of the time to prune roses reminded me of when to go look for May Flowers. It was when the forsythia was in bloom and the leaves on maple trees were the size of mouse's ears. Just about now I guess. We used to take walks around Quabbin Reservoir to look for them.
I would like to comment on something Myrtle said recently on another thread explaining how the spam was removed and what she was and wasn't like.
First I need to comment that I've put up a lot of information about my own experiences and they keep changing in different ways. From where I am now, I can see that the vast majority of these three plus years have really been about recovering and taking in and settling down where almost nothing physical has changed like people or houses or activities. It's all inside.
What I perceive in my life about myself and my life has never stopped transforming where recovery from Alzheimer's doesn't feel like something real anymore, even though aspects of that are still things I'm dealing with - as opposed to being overwhelmed by, oppressed by, or dominated by - all of which are transitions I was in and then moved out of.
More recently, as I've said, my world and my day and myself all feel ordinary and normal. Those are good things but they don't provide me with answers so much as take away roadblocks. The truth is that feeling 'normal' brings it's own and very real version of my perception of what my situation now is.
On that topic, it is taking effort to keep the perspective that I have just come out of a very long hell and so, of course, I'm not brimming with enthusiasm nor do I have solutions and plans. I just got here where the only thing in my way (and the only path of opportunity) is me and what I can and will do or not.
The point is that there is a basic set of options of entering another relationship, remaining a widower, taking it as it comes, getting busy with something, or changing myself.
Whatever I do, the more I understand myself in what I'm like and what I think about that, and what I do and don't want, what I do and don't believe, the more empowered I am with every single aspect of the choices I have - including the choices I'm aware I have.
So I was glad to see Myrtle's post because it sounds familiar in the steps along the road of discovering and empowering ourselves to be ourselves - whatever that may be.
Here is part of that post:
"(The reason I could not sleep is that I am a worrier and the reason I emailed Joan is that my knee-jerk response to a problem is to solve it.
The reason I have these traits is that they are part of my nature. An engineer might say that's the way I'm wired. A pious Christian might say that's the way God made me. Being neither of those things, what I believe is that each person is an individual, with their own strengths and weaknesses. Everyone is different by nature and also by their unique upbringing and experience. That's why different people respond to the death of a spouse in different ways. So there is no point in being impatient with or disappointed in or critical of someone who you think is stuck in their grief or cannot or will not "move on." ) "
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I've always been self-critical. I still believe in being that way. But I have managed to learn more about what being myself means and more importantly I've learned to be more supportive and even appreciative of myself, and most importantly in that, I've learned how to be better company for myself.
Don't get me wrong. I don't have a life. I'm lonely but don't want much company. I have no idea what I'm going to do with this time. I don't really have any big answers yet. I used to be terrified of that. Then I worried about it. Now I wonder about it. It's different because all those thoughts used to be way over there in unobtainium. Now they're real to me and right here.
Wolf, I was always self-critical but when I was in my forties, a switch flipped or something and I realized I'd had enough. I'm still introspective, but I no longer have any patience for guilt or for trying to meet others' expectations of how to be. It's as though I'm a grizzly bear that has been poked too many times.
If our grief is due in large part to our nature, as tempered by our upbringing and experience (as I think it is), then criticizing someone for grieving too deeply or too long is not really taking issue with their behavior, it's faulting them for being who they are.
"I feel I won't be completely emotionally "stable" until my husband passes away - I won't be at peace until he's at peace. Just wondering if that's the case for the widows/widowers out there? Would like to know if once your spouses passed away, was that state of limbo gone? Was there a sense of "freedom"? I realize it will be difficult after his death, but hoping it will be a bit easier moving forward - I feel stuck right now."
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I don't believe that is the common experience where the state of limbo actually does end when they pass, but that's not on peoples' minds at that time from what people here have shared. It wasn't my experience either. I did have that very feeling earlier when she followed me around and stalked me in the way a lemur in the forest might follow me around, looking at me in an almost unhuman state. The face and features of my wife but more like an unrecognizable creature. I believe that horrible experience, even though I knew everything about what was happening, was part of the estrangement that led to my tortured decision to place her in a NH.
I believe we really do all go through a unique experience even though so many of the elements are the same. For myself, trying to put aside my own concerns and just keep going while she became a strange thing I used to love who was still the person I loved but wasn't really in there anymore - may well have been the single most oppressive part of caregiving. The endless and never ending slow decay into an existence of madness was a close second though. Watching her sit in the chair for her breakfast, and quick as a bunny, pull her pants down and start peeing on the chair like she was on a toilet where I scrambled to deal with it, and the eggs on the stove burning, while she left and got into something else - is just one of hundreds of examples of becoming worn out by repetitive shocks.
I had no rational grasp of what was what even though rationality is my bedrock before I had to dance like Nureyev on a hot tin roof while having my insides ripped out continuously. Fuck Prometheus and his boring liver.
The state of limbo also applied to the three years she was in that NH. I had little to do besides visit and decide things about her care, but, I was too engrossed in the horrors that continued like being told she was too aggressive to keep and watching her go into a wheelchair and watching her become a hundred year old lady even though she died when she was just 64.
Thoughts like you are having in a similar situation (husband in NH) did not occur to me. I was not strong enough to do more than endure all the nightmares while, unknowingly at the time, continuing to tighten up into a little ball that might wink out of existence with a blink at any time. Others are stronger or more practical than I was.
Instead it has taken me three years of serious resolve to invent a new superglue and a new sledgehammer and put the pieces together even while I felt like I was still fully in that emotional/mental storm. I felt SO BAD at putting her in there and was in such a state that that guilt alone overpowered even the reality of the disease for some time. Then she died and I found out that I hadn't dealt inside with any of it, right back to the beginning, and it was all backed up and all unleashed by the reality that she wasn't even here anymore. That should have resolved some things, but it had no effect on the backed up, spit out mess I was then.
I know these things now with certainty because I've gone through every blessed inch and burrowed through every nook and cranny and have turned every stubborn thing inside out. I have never gone through a more intense time in my entire life than the three years afterwards. Surviving was a kiddie pool compared to digesting all that and reclaiming myself. No advice, no help, no information, no guidelines, no examples, and no useful feedback for quite some time.
I think every person is very different and yet I see that almost everyone who speaks about it has their own suite of issues that affects them. That's why I've encouraged everyone who has a grasp of what they want or what they believe - to pursue that. One of the common aspects to this experience is that your old world ended in most meaningful ways, and we seriously need a new world to start taking on meaning.
With that same conviction, I've also cautioned everyone that you absolutely will be changing in new ways as time goes on, which is why I've always said that I would make no change in my life except the necessary, while I wait for my changing self to start settling down.
But the bottom line is that we are all different and one person moving may be a mistake while another person moving may be a good thing. The only thing we can do is follow our heart. I believe the answers for most lie beyond where we are even as some of the answers for some are exactly moving somewhere else.
I might remarry. I would likely be in my 70's though. I saw myself as a widower, now I see myself as single. I saw myself as alone, now I see myself as me. Those are simplistic statements because there's a ton more to it. I'm still going through changes that are far less charged with feelings, but are just as fundamental in nature.
For example, my outlook about life and about me in my life are both changing as my opinions on how things are and why they are that way continue to change. It took time to realize and become comfortable with the fact that all the assets are now rightfully mine. It is still taking time caring about myself never mind taking care of my assets. I am still discovering what I think and feel in a full and truthful way. I'm still learning that my store of patience and ability are equal to most of the things that happen in life - and I'm still gaining confidence by examples that that is true. I'm still learning how to entertain myself, get along with myself, understand what I want and don't want, and it's only in this year that I'm starting to feel genuine interests for their own sake again.
In summary, I did know that the state of limbo was gone immediately. In my case that didn't matter because I had years of things to deal with before that fact became an actionable aspect of my life. For some that is not the case while for some it is a much harder road.
<<I feel I won't be completely emotionally "stable" until my husband passes away - I won't be at peace until he's at peace. Just wondering if that's the case for the widows/widowers out there? Would like to know if once your spouses passed away, was that state of limbo gone? Was there a sense of "freedom"? I realize it will be difficult after his death, but hoping it will be a bit easier moving forward - I fell stuck right now.>>
Nicky, I never allowed myself to linger in a state of limbo, but it took conscious effort on my part. What worked for me was to stay busy. As to that sense of "freedom" you mention, well I guess I would describe what I felt as more like "floating" and "rudderless" with nobody now depending on me. I'll paste in a few excerpts from things I had posted in the days and weeks after my precious Frances passed away:
<<Old Gourdchipper is doing fine -- I don't need any rope or anything, although hugs are always appreciated. Tears were just below the surface for much of the time during the past couple of weeks as I sat at her bedside, and I'm still misting up frequently when I try talking about Frances, but other than that I feel almost guilty at the relief I feel -- for both Frances and myself. I've been able to sleep, mow the lawn, etc. for hours at a time without thinking about "my loss". Within the next few weeks I plan to begin the dreary business of cleaning out closets and drawers of Frances's effects, and also expect to throw myself into lots of hot and hard work outside -- reclaiming our yard from the jungle that has been encroaching on us during the past few years when I've been more or less house bound. >>
<<Truth be known, I’d probably rather still be caregiving, as bad as that was, because at least my life had purpose then. I know that’s a selfish viewpoint, and for Frances’s sake I’m glad, of course, that her struggle is over and she’s at peace – but now, with nobody depending on me, I’m feeling useless and rudderless and not so sure of myself. With her at my side and depending on me, I HAD to muscle up and do whatever needed doing and get things right, but now there’s nothing that HAS to be done and nothing I HAVE to get right. So I’m afraid I’ve been sort of floating. The first week or two were easier because there were things that just had to be done, like contacting folks and planning a memorial service, and then later writing notes acknowledging flowers and memorial gifts to the Alzheimer’s Association and Vitas Hospice. Then after that I found some “busy work” to do in acknowledging every one of the many scores of sympathy cards and notes – and making a personal pitch for future support of Alzheimer’s research in the process. >>
<<I’m casting around now, looking for some appropriate local volunteer activity in support of Alzheimer’s activity that I can get involved with, and in the meantime planning a short RV trip back to Mississippi a couple of weeks from now to spread a portion of Frances’s ashes on her parents’ graves and, in the process, hopefully give some “closure” to two of Frances’s sisters who weren’t able to make the trip down here for her memorial service. I’m getting out socially a little bit, but it’s still not much fun. Today I may take my “second best sweetheart”, Joyce, to a movie and dinner, but I’m afraid I’m just sort of going through the motions at this point. But they say time heals everything, so I’m looking forward to better times later.>>
This is a bit off topic, even for this thread. I am of the mind that the word "widower" should be retired, in the same way that the word "actress" has been.
Nicky, A sense of freedom is what I felt after my husband died, but it took awhile, maybe 6 months to a year. While he was alive, I was totally within his orbit and every day revolved around him, even though he was in LTC.
Myrtle - I also feel that I'm within my husband's orbit & everyday revolves around him & I find at times it's making me unhappy & stressed. I enjoy visiting him every day, but I'm working at trying to have a normal life without him. I've finally accepted he no longer fits into my normal life, he has his Alzheimer life. When I visit him, I'm entering his life & I'm part of it while I visit. It's very difficult to leave him knowing I'll be alone once I walk out those doors. I plan my appointments or outings around his visits & I'm OK with that. He's close by, so it's not difficult to plan. And visiting him daily is now part of my normal life - it's living in between those visits without him that's hard to deal with.
I'm glad to hear you eventually felt a sense of freedom. It makes me hopeful that I will also.
Wolf & Gourdchipper - thank you for sharing your personal experiences. Everyone reacts differently & I'll just have to wait & see how I will handle it.
I've always been a planner, so sometimes I try to prepare the ground work so I can be better prepared when the time comes.....but I know that's futile. I proved that when he entered long-term care. I was sure I was mentally ready for him to enter LTC, especially knowing that was a better place for him. After putting him in a private residence, which was the most difficult thing I ever had to do, I assumed entering LTC would be a bit easier - after all how could it be worse than the first time placing him. Wow, was I wrong - definitely not easier & certainly was not ready for the flood of emotions..... Seven weeks later, he was transferred to a 2nd LTC because the 1st one didn't work out & again I was not expecting to feel all those emotions. I don't think we can ever be emotionally ready.
I think Myrtle meant talking about the term "widower" not being on the topic of widowhood; however, in the same way that actresses and actors now call themselves all actors, it follows that all widows would call themselves widowers - selecting the male version for everyone just like they did in actress/actor.
That doesn't work as I've shown because widower is such an afterthought in the english language that the term widow works when we say someone has been 'widowed', but it doesn't work with widower when we say someone has been 'widowered'.
Revenue Canada has decided this in Myrtle's favour and only offers me the box 'widowed' to check in reporting my official status when filling out my tax return. In another year or two I might write in there "not your business" and see what happens.
I'm neither anymore anyway. For me the term is transitory. It means my wife died recently and my definition is affected by that. As I said, "not your business". I'm not married either. And as for Revenue Canada, next year will be the fourth year I file after she passed away, and next year I will be ticking the 'single' box - and again see if anyone either gives a flying or says anything.
I'm not user ready out of the box. I come partly assembled. I had my sister laughing hard recently when we touched on end-of-life choices where I had updated her that Amsterdam was so yesterday because Switzerland doesn't ask questions outside basic self determination. I'm talking about what the english world calls 'assisted suicide'. I told her I figured out a way to save the plane fare and not leave the comfort of my home. All I have to do is draw a picture of Mohammed with my name and address written on it and push it out into the ether. They will be lined up outside my door. If I have time, I'll cough out that it isn't 72 virgins they get, it's 72 Virginians. In with a whimper. Out with a bang. Probably make the evening news too, although I can't imagine caring about any posthumous fifteen minutes of fame.
One place you won't be lonely this weekend is a cemetery. I visited two today and there were quite a few people putting out pots of flowers. The more interesting one was the old Catholic cemetery where my grandparents are buried. That graveyard was founded during the industrial revolution and many of the deceased must have been very rich, since their markers are large and elaborate. Of course, for every factory owner, there were many workers and their markers are small and flush with the ground. My grandparents' graves are hard to spot because they are like that. Near where they're buried I noticed the headstone of a girl who lived from 1901 to 1917. More than 100 years later, there was a pot of fresh flowers on it! The other cemetery is the newer one, where my husband and parents are buried. I didn't linger - I just said hello and left my flowers there.
The family in West Virginia still puts flowers on my great-grandparents graves--Great grand-dad died in 1898, and Great grandma in 1945. Very well-loved people--I've heard all the old stories, and wish I could have known them.
I am now a widow. When I went to social security he said my marriage ended when he died. Wasn't ready to wrap my head around that. Hadn't even had the funeral yet. I am wearing his wedding ring and St Christopher's medal.
Every day has been confusing. There is not one thing that feels "normal". There are a lot of things I've put back - like I can hang car keys by the door and I put my knife block back next to the stove. A lot of things I don't have to be annoyedor scared about any more. That's nice. I had remodeled his bathroom for safety. Now I am showering there. It is so much prettier, easier to clean, and I love the safety bars.
Fortunately I still have lots of action items to complete. Keeps me busy and then I nap. Keep waking up in severe startle response unable to breathe for a few seconds.
Can't decide if I want to put an asterisk by my name . How do you do that?