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Loss Of A Spouse Leaves Us Asking Who We Are.


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I have been, for about six months, finally unpacking from our 2009 move (we moved here 9 months before Bill died so he could walk to the General Store, friends' shops, post office. It lasted 2 months.). I am also looking at paint colors, blinds for my art studio, trees to replace the ones I lost last summer, and on and on...it is quite a list. I guess it is time to move into this house now. Anyway, today I was sorting some boxes and came across the following poem that a friend had framed for me back in 1970ish. Pretty fresh out of a religious order back then, I really had no clue who I was. Here I am again doing a bit of looking again.

She's craning her neck, Lord

almost breaking it trying to find out

who she is...

It looks painful, that craning

to see around a hope or under a fear.

Sometimes I guess

a person has to turn inside out

to gain self-knowledge.

I wish it weren't so awkward for her

and painful.

How can I say to her that I like her neck,

the way it is?

Right now she's beautiful to me.

She doesn't have to crane her neck for me.

But then it isn't for me she's craning.

It's for herself.

She won't be happy

until she finds out for herself

who she is

even if she breaks her neck

craning.

Take care of that lovely neck, Lord.

I read this today a few times and was reminded of how so many of us are asking who we are without our partners/spouses/soul mates. The poem reminded me that I am just me, the same person I have always been but stronger, more compassionate, more aware, with some new priorities and more and yes...I am still Bill's beloved. I thought some of you might like this poem. I have no clue who wrote it.

Peace, Mary

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I think I said that very thing elsewhere this week, that I am still me, the same person I've always been and George's entering my life or dying does not change that, but the journey I am on has inscribed it's lessons on me.

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So true that we are still ourselves, but over time we also became so much more because of our beloved. Partners/spouses/soul mates they helped us to grow and change from our original self, just as other life experiences do over time. After the loss, we still have ourselves, but with a large empty whole.

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They've been a very big part of our journey, and yes, we'll always carry that hole inside of us.

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Oh Mary, as it did with Harry, reading the poem did bring tears to my eyes. I am no longer able to see who ‘just me’ is at this time. About the only thing I know for sure is that I am still Jim’s beloved.

I think I lost who I was during the constant care of Jim as he journeyed through ALZ. I entered his world and we lived in a fairy tale. Mostly I pretended to join him in his world. Days, months had no timetable for me. Christmas could be in March. Birthdays didn’t have meaning. Familiar people were no longer familiar. As hard as I tried, I could not just be myself. I loved Jim so much that his world was mine. Now, I have to rediscover who I am. I know I was a good person. I know that I was compassionate. I know that I was truly in love with Jim. I know that I have to find out who I am now. That is one of the big questions I have as I go through this painful journey – who am I now?

Why so much pain? And why am I whining so much when there are others who have so much more pain than I? I am ashamed to be so selfish in my need for compassion. Anne

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Harry, I am so glad you liked it.

Anne, I do know what you mean when you said you lost your self in the caregiving years. I did also. I paid no attention to my needs, my body pain, and the fact that I was disappearing. I got into a numb habit (new, i must say) and I still struggle with listening to my body even when it screams. I have done well with this recent round of pneumonia and then wham...I revert back to that habit. If there is an area that I need to really focus on that is it...I learned this weekend that I am not as good at it as I hoped i was.

I do want to say, Anne, that I do not see you as the least bit selfish. You are in deep pain including all the pain you (and I) ignored for those many caregiving years. That is all stored up waiting for our attention. I became some one I do not know. Since then I have slowly retrieved myself to a large degree but it is very fragile. I see you reaching out to people (including myself) all the time. It is time for you to be a receiver. So hard after a lifetime and especially long period of Intense giving. Patience, my friend. My big lesson right now.

Peace,

Mary

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Mary that reminds me of the seven months after Pete had the stroke when I became totally focused on travelling to the hospital, sitting with him, feeding him via tube, stroking his arm, talking to him, reading his writing (he couldn't speak), coming home to an empty house, and then the six weeks when I had him home before he died in the nursing home when I had to be away from him for our daughters new baby, and it was a time when I didn't need to ask who I was because I just responded to the situation. It was the most awful period but I knew then what I was for. I knew what I needed to do. I didn't get ill. I was a rock. Now I am lost. I need to find myself. I'm not sure who I am without Pete because we were one person after fifty years together. I don't want to be one person, I want to be a composite Pete and Jan person. I think this is the hardest thing I'm struggling with. And I don't know how to do it right now. Mary, you cast light on this feeling. You have struggled with it and are still struggling. I read your words and I listen and try to follow. Anne you are pretty much where I am.

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I did caretaking for nearly three years when my MIL was dying of cancer. She was completely bedridden so it meant attending all of her needs. At the time my son was age 1-3 and my daughter age 3-5 so they were with me. I took care of family that visited on the weekends. I cooked, tended her personal needs, cleaned, and I was her link to the outside world...although how, I don't know, because I don't think I had an "outside" life then. It was hard. It was also very special. I was told about this group and that group, yet who could commute 100+ miles to attend a group when it was hard enough finding time to go to the bathroom? Ha! I thought doctors were out of touch with reality to suggest it. I loved Home Health, their workers were like angels to me, giving shots, teaching me how to do things, they were wonderful.

It is easy to lose yourself when you are caretaking. I wouldn't change any of it for a moment. It's something I can't describe. How I would have gladly taken care of George if I could have had that option! But that wasn't to be, for the weekend he got his diagnosis was the weekend he died, he never left the hospital. My husband was ripped away from me before I had time to digest the information. But back to the caretaking...when they pass, you're left with time on your hands for the first time in years and you no longer know your purpose. You've lost sight of who you are and what life was like "before". I don't remember the return to normalcy, I do remember wondering my purpose. Fortunately, I had young children to take care of so I still had some sense of purpose with them...I can't imagine what it'd be like if I was older and alone, the adjustment would be huge and impacting.

Right now my mom is in Dementia care, and she doesn't need me to take care of her, they do all of that for me. But I felt I could bring her a sense of caring, a link to the outside world, I could get her out and for a moment in time, bring her some relief, perhaps even a sense of normalcy. But that is not the case. She is lost in her own horrible world. It is not a good world, and there is nothing fairy tale about it...she is spewing hate and venom and won't relinquish it for even a moment so we can enjoy being together. I don't know how to deal with it. I'm having a hard enough time just surviving myself, with no one to care, no one to help...I have to take care of me and right now there is a huge snow storm moving in today and tomorrow and I'm concerned about getting to work in it...the timing couldn't be worse. I wish it had come at the beginning of the weekend instead of the end, so I could shovel on my time off, but alas the weather doesn't ask us when it's convenient, it comes when it will and demands our full attention.

My mom is fortunate in that she has always been taken care of. She hasn't had to work outside the home, has always had her needs met, and had plenty of children that cared about her and tried to help her. And she appreciates none of that. It is one thing to take care of someone sweet, like my dear sweet MIL, or your husbands, but how do you attend to someone so mean-spirited? What is our obligation? How much do you protect yourself and how much do you muddle through, ignoring their venom? Where is the balance? On my income taxes this year, they ask a question they have never asked before...they ask if we have a live parent as of the end of the year. You know what they are getting at...they are moving towards making us responsible for them. Oregon already has that law in place, they have only to implement it. I don't have $4,000/month to cover my mom...I barely live, most of the time eating beans because I can't afford meat. If my mom was someone I could live with, I would have taken her in already...yet in her state, there is no way I could work outside the home and watch her at the same time. Even if a person could give up their job to take care of someone, what do you do when they die? How do you suddenly return to the work world when you have been out of it for a few years? I went through the job hunting venture last year...nada. They say 1/2 of the Office Mgt. jobs are gone, never to return. If I were out of the work force, I would likely never return. How do people live through that?

I have no answers, only questions. I don't even concern myself with what my purpose is any more, I don't have that luxury. My life has been reduced to something much more base and elementary...that of survival. And I am finding it hard enough to just do that. It's funny, laughable to me, that some people my age are taking trips and cruises! There is such disparity in people's outcome in life! While some people have a husband sleeping next to them, a husband that brings in income, does chores, holds you every night, loves you, shares LIFE with you...others are alone, struggling, lonely...always alone. I don't begrudge some people their good fortune, I just don't understand why there seems to be such disparity. Some people, like my sister, have someone to take care of them when they break their arm...but others like myself have to find a way to take care of themselves. It's interesting, this disparity.

Purpose? My purpose right now, I guess, is just to survive.

Sorry, I didn't mean to get carried away, it just poured out.

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I agree, Kay, I would do it all over again in a heartbeat...with greater awareness and hence, better presence. I have done a lot of pondering about those care giving years, believe me and I think I have identified the pieces of the puzzle that led to things I did not do well. How grateful I am that Bill and I had an opportunity (a window opened in his diminishing ability to be present and communicate) to talk about our life and his illness and how it impacted both of us...It was not a long talk, those windows, rare as they were, did not stay open long. I am not certain how long I took care of Bill. It crept in slowly. I started taking over small tasks that would confuse him, then the finances that he showed me how to do before he was no longer able. He did them, and actually enjoyed it and then each time (twice a month) we sat down to go over things as needed so I was always in the loop. Gradually Bill's needs escalated and we went forward...a day at a time. I know it all started in 2003 but his needs were minimal until 2006 and then they really escalated. I was not sick one day in all that time. I just kept going, seeing clients full time, publishing the Voice, taking care of him and the house and Bentley. It was so hard on him... so very hard to watch himself disappear. and yes, horrific for both of us.

and I agree with you...getting to support groups (which are extremely minimal in rural areas) is a trick. I had to hire someone who could come at that time and then I am at a poorly run support group, so I dropped out.

I am not sure you know that your purpose is well beyond your own survival. First, your Arlie has to adore you because you adore him. And then there is this forum. You pour yourself out to people here and yes, I know in giving we receive but truly you help so many and share of your own pain in order to help them. I call that purpose. Do not underestimate its value. Your 110 mile trek to do any volunteer work has been cut to a matter of feet as you go to your computer and reach out to those in pain here.

I am pretty clear that my purpose is what it has always been...to assist those in pain. I am just not exactly sure of what shape I want that to take now. I see two clients right now who sought me out and as I saw with them on Friday, I also found myself asking if this is how I want to help. This is not heavy intense therapy right now as I have done a lot in the past. Just not sure of the road. What I do know for sure is that before I start down any new roads, I need to come to terms with self care or I will create a monster :)

Freezing rain, snow, sleet, ice coming today. I am in for the day. Tomorrow it will ironically, be 40 degrees, so I can keep Bentley's grooming appointment. I will post a picture of him in his new therapy dog vest which came this week. I am still waiting for paperwork from Dogs on Call and did not pursue calling the gal since I was sick so it will come when I am ready. One gal said she suspects my email got lost on a cell phone. It is fine. What will be, will be.

Finally, no apologies are ever needed when you pour yourself out here. We are all here for you, too, Kay. Gladly here.

Peace to your heart

Mary

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Dear Kay,

I am hearing you and I'm glad that you poured out your thoughts. Like I said, I feel so ashamed to be complaining about my life. I have nothing to complain about. I have always wondered about the word 'disparity' and I have lived many years to see it in my life.

I will say it again, Kay, I admire you for your survival skills. Here I go again always trying to emulate others instead of just being who I am. So the question - who am I now that Jim is dead? Your thoughts about your life keep me somewhat grounded. Anne

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Kay, you and I are living pretty much the same life. I'm so tired of eating a bowl of cereal for a meal, stretching my one dog's food to last longer, making one roll of toilet paper have to go way to far. Survival, that's what is has been since Larry's death. Friends just turn away now. I rarely talk to anyone, Larry's mom will drop by but not like she used to, her life is full of remodeling, cruises, etc. It might sound like I'm resentful or jealous, its not that really, its like you said, the disparity of it all. I have friends houses I could throw a rock at they are so close but never see them, they have their lives, husbands, money. My mother fell before

Christmas and is unable to walk without aid now, my brother is helping her. She's mean, angry and very difficult to deal with so I can relate. One of my precious beagles died right before Christmas. I didn't have thanksgiving, nor Christmas this year.

It just stings really badly when you've lost the one person in the world that meant so much to you and the grief is in itself so hard but to now fight to survive daily on top of the loss, sorry but it doesn't seen fair. (I know, life isn't fair.) please don't tell me that until you've been here. I'm doing all I can, I work at night customer service, I paint and sell my items but it's not enough. I'm so tired. I dream of Larry often and it is so tempting to end the struggle now, who knows, maybe I'll get to see him again.

I wish there was something I could do for you Kay, I've said to you before, too bad we are on opposite sites of the country. If there is something you need maybe I could figure out a way to help, I hate that you are suffering too. Love to you, Deborah

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Dear Kay,

Mary has said so well what I feel here. You cannot count the people you inspire here. We love you and cherish you.

For the rest, I don't understand the disparity most seem to accept so readily. It is not right. And I wish to God the fools in Washington--and the fools I deal with in the outside world too often--could read what you and Deborah have written and understand what is going on out here in the real world among real people who are truly hurting--not only emotionally but financially as well.

But like everything else, people do not understand things until they have experienced them. Deborah, what you say about toilet paper is the most graphic representation of the "disparity" we all perceive I can recall reading. It makes me so angry I want to spit.

And if I am not careful I will start a political rant that has no place here. So I'll shut up and write that rant elsewhere at a later point.

Peace,

Harry

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Dear Mary,

That was a wonderful piece you posted. As a long term care giver. I mean 11 years I started cutting back on my working hours to take care of Pauline. She went in a wheel chair in 1999. I gave all I am and all I was to provide the best care for her I could. Like you I would not change one thing. As the years went by, my work hours went down until I knew I had to be home 24/7 with her. In 2008 I made a gross income of just over $9,000. In 1999 my gross income was over $40,000. I know what it takes to feel the pain of loss of income while caring for your loved one.Our Faith in the Lord pulled us though the hard times. It took a toll on me, but once again my Faith has healed me from the inside out. I am still healing everyday, but I know I am in good hands. I can smile, laugh, enjoy a sunrise in the mornings. Do I still have a hole in my heart for Pauline? You bet I do.

Learning to start over is the hardest part.

God Bless,

Dwayne

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Deborah, call me any time, yes I do understand.

Harry, I know, and I don't think I've ever felt the way I do right now about our government. The fact is, they are out of touch with reality and don't care about the little people. Middle class, low class, we don't matter. Special interest groups, that's all there is., that's how they control us and reach their objectives.

I only hope to survive all of this. I think that's all Deborah hopes for either. I'm sorry you didn't have Christmas, Deborah, that really sucks. I don't mind stretching food for me, but for my dog...well that's too hard. I'll pray your art sells. I have listings on eBay, I pray they sell as well. Isn't it funny that our gov't even wants a chunk of that and eBay raises their fees, now charging us on shipping? Apparently their trillions isn't enough, greed says they want more. It wouldn't be so bad if they'd even be honest about it, but they insult us with their deception...they tell us false reasons why they do what they do. They insult us, just like our government does.

Oh well, we'll get through this a day at a time like we always have.

Dwayne, I know your faith is strong, I'm glad for you, I'm glad it's carried you. My only problem with faith is it doesn't save innocent people, babies die without help, sick people die without care, there is much injustice in the world and sometimes an ascribed faith isn't enough...sometimes it takes actions to match the words and faith. I hope you touch many lives with your faith and it truly makes a difference to others. You've worked hard along the way and deserve great results.

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1/28/2013

I want to respond to Marty’s post sent to us today titled: “Teach Your Daughter’s Wailing: The Power of Mourning Women.” As with so many pieces of information we are inundated with in our grief journeys this is another one of those articles to reflect upon.

I enjoyed the imagery in the opening paragraph. Allowing the sacred tears that flow from our innermost beings to be witnessed by other mourners. That is what we are doing on this forum. Grieving openly and without any judgments. We have no need to fear that we might step on someone’s toes because all here know that we are all gathered for the same reason – to openly grieve. Allowing others to witness our mourning says that it is all right to do so. Whether it be male or female grieving we all deserve to to heard and allowed to mourn.

The word ‘disparity’ has been used over the last few days. It is a harsh reality that our country is broken. I think we have become so self-absorbed to what is going on in the world unless it is a major horror that we fail to see the poor, the sick, the broken hearted, or the grievers who are all around us. Our eyes are open but our minds are closed. It would be good for us if we could attend to these life situations just as we try to take care of our daily needs.

Most times I fail to see that what we do is really up to each one of us. If we are going to conquer this ‘disparity’ we will have to do it one person at a time. We will have to really understand that each one of us is important in our world and that we can make a difference. Each person deserves to have his/her needs met just as each one of us deserves to grieve for as long as it takes and without guilt.

I believe the quote from the Bible: ‘teach your daughters wailing’ could very well be linked to the word ‘disparity.’ Teach our fellow human beings how to reach out and care for one another. Cry openly, demand that we be heard, stay on a subject until someone hears us, beat down the doors of opposition, make people hear our cries, and most of all display that empathy that is buried deep in our innermost beings. Anne

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Anne,

So very true, you've given us much to ponder on. We live in a world where it seems people are out for themselves and there has been over-saturation due to media that we cannot handle so we shut it off, as a result we leave everyone to work out their own problems instead of caring for one another. However, every once in a while, a tragedy strikes the chords of people and they get involved and reach out to others...we saw that happen in the recent shootings. I don't think people are bad or uncaring, but more it's a sign of the times we're in, there are too many problems and we're on overload, so we shut off. If we'd make it our concern to care about just one person in this week and demonstrate it...it'd be a start.

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I've been busy and also our son came round last night to help sort out Pete's will. I wish he had done it earlier but he has his life to lead. Can't say his company helped much because I keep still expecting that somehow some people might fill one of the Pete holes in my life (I don't expect more than a little tiny Pete hole) but I think I have to come to terms with the fact that the huge hole can never be filled in any way and I have to accept that. Our son can never be his Dad in any shape or form. So onward and upward alone, but while I have this community of people showing me that I'm not alone I am helped. We all have to come to terms somehow and it's going to take me a long time because I don't even want to. I don't wish to move forward and how ever many times I read that it doesn't mean leaving Pete behind I can't beleive that. Maybe this will come. Kay you are such a brave person. I love to read what you write and I feel really close to you whatever you say. I have to finish off a tribute to Pete that will appear in a magazine he used to edit. It's so painful because its an acknowledgement that he has died and even now I find that so hard.

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Jan, I love how you put it (a little tiny Pete hole)! You are so new at this, I know it's hard to imagine moving forward...I used to hate that term, as if somehow it meant "forward without George" but it doesn't mean that at all. It means, simply, continuing, surviving, another breath for me! George would want that. I remember how proud he was of me, of course, he was biased, but he used to say I could be or do anything...I wish sometimes I could believe that or see me the way he did, but I can still accept his encouragement even now, even though he died. His voice lives on inside of me, I can hear him any time I choose to!

Sometimes it amazes me that he's been gone this long, it's hard to believe, but at the same time it seems forever since he's held me. I imagine his arms around me and remember...

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Kay, I like this quote of yours: ''His voice lives on inside me, I can hear him any time I choose to.'

Here I go again quoting Marty from her lectures and book: Finding Your Way Through Grief – A Guide for the First Year - ‘We can use our imaginations and let them go where they will.’ Jan, you brought a smile to my face when talking about your Pete and used the term ‘a little tiny Pete hole.’ I am beginning to realize why you and I and others who are so new in our loses resist the term ‘moving forward.’ It’s like going in one direction and not looking back. I want to look back just as you do. Actually, I want to BE back where I was before May 2012. So I guess we have to try to understand a little more just what that phrase ‘moving forward’ really means in our lives now that our spouses are dead.

I like Kay’s comments about ‘continuing, surviving another breath for me.’ You see, Jan, we are learning from others who have been on this journey longer then we have been. I for one find it encouraging when we have those who are moving forward nudge us ever so gently and say just the right thing to help us in our journeys. I have mentioned before that words are so comforting and most people who use the kind, empathic, and positive words on us are doing so not even being aware how much they help us as we grieve.

Harry’s post on the positives have helped me in my journey.

Mary’s continued comments have brought me along when I didn’t feel like ‘moving forward’ at all.

Others have assisted me in my journey when I felt like giving up but they kept saying that ‘you don’t want to get stuck’ in your grief.

I have not been very courageous in this pain I am in so I continue to be here in this forum and remember what Marty said to me a while back that ‘we will hold your courage for you until you are ready.’ I still am not ready, but I think I’m ‘moving forward’ maybe an inch or two. Anne

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Yes Anne. Remember we both lost our beloved husbands in May 2012 (though had already lost bits of them before that). Actually as I wrote the word 'lost' it seemed not the right one but I can't think of another. A lot of our conversations are about words, have you noticed? We struggle for the right way to express these deep important things and no words really get it. I don't want to move at all, whether onward, forward, upward (oh maybe upward if Pete were there). I do of course want to go backwards but one thing I know is I can't do that except in memories. We struggle to express the inexpressible and considering our situation we do pretty well but never well enough. I love the way Kay talks of George. It comforts me enormously to know that she feels that way. He is still with her, in her heart and that is where Pete will be as long as I live. I dreamed two nights Ago that I was with a quite large group of people and Pete was alongside me as a sort of shadowy presence. And I woke thinking either I or he told me to write the dream down or record it but I was too tired to do so and I so wish I had. Maybe I will dream it again? Peace.

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Anne, I think you have been very courageous. And I love the mental image that Marty suggested of all of us holding your courage until you are ready. I do see you taking lots of risks and I honor that. This is a tough journey. You do it well. Peace to your heart.

Jan, I do agree...there just are no words and we search for the closest we can find...and we all know it is just the best there is but yet...no words can say what our feelings are. I am sorry you did not write your dream but it seems you remembered a very important part...i.e. that Pete was there with you in a sort of shadowy presence....they come in dreams...I just know that.

Love

Mary

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I remember Marty saying things like that to me somewhere along the way, and it really helped, it made me feel "carried".

Jan, I think the dream does it's good, even if you can't remember it all, it serves its purpose. And maybe that's what it means, that Pete IS still with you.

Anne, I don't think you are getting stuck in your grief, the first year is still so very fresh, you are probably doing better than you realize. This is just such a hard thing.

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