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My Beloved Is Not With Me Anymore


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Dear Mary,

Talking about the 'trek' we were on - my Jim was not a small man – 6' and he was Irish so he loved my cooking. This pains me to even think about our journey to his death. I think I told you this in E-mails. I was very fortunate that Jim only became unsteady around the last six months of his life. The falls were terrifying for me. And he had many of them. I hated it when people would tell me that I couldn't keep doing this and I should find a good care facility for him. I know this and if I had to do it then I'd do it. Showers were always so scary because I feared he'd fall. I was on first name basis with our fire department. When I finally called Hospice and they started to work with us it was not until the last month of his life. I felt so comforted with our HOV Team. They truly were our angels. I was able to become his partner and love again and not only his caretaker. I will always be so grateful for that. I started with my HOV grief counselor in September. I see her this Wednesday. She comes to the house because that is where I am most comfortable. And anyway, that's much more cozy than meeting at a coffee shop! I took to her right away. She is so caring. We are very fortunate here in AZ to have access to a specialized grief counselor for the first year of Jim's death. The first months I was just numb so I'm getting a late start. I am reading and reading and reading. I allow myself only a few hours a day for self-pity because it is just to exhausting. I do find comfort and caring and help from all of you on our grief support site. I have always been a spiritual person but as you mentioned taking care of a loved one puts pretty much everything on hold. I found that I had to store everything in my heart because when it was time for sleep I slept. I am journaling. It is so painful but I just pour my heart to Jim as though he were sitting here with me – I know he is not – at least not in the way I want him to be. Perhaps now that the light is beginning to dawn I'll be able to process what happened the last five years of my life. Thank you for the links on meditation I'll check them out. I have always meditated and I know that that is why I had the strength to do what I did. Relaxing is another story. I'll put a little more effort into that one. Anne

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Hi NATS,

Good for you for working out. Remember what I said about our hearts - we only have so many beats in our lifetime and I'm not going to waste them on exercising. But I was only kidding. We need to stay healthy. Tell me more about the steps you are taking on your meditation. 54 is so young. I don't know how I'm going to react when I turn the big 70!!:o Anne

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Dear Mary,

I took a nap this afternoon and came on our site to see this beautiful quote you sent out. Wow! Thank you. You get a hug right now. Our journey will just keep on keeping on. Thank you for YOU. You are indeed a caring person. I'm sure many appreciate how you have our hand helping us on our journey. And I truly hope, Mary, that you know we are here for you also. We hear the quiet pain in your heart. Anne

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Dear Marty,

I have always been a spiritual person. I do read and meditate. Relaxation was never in my vocabulary when taking care of Jim. He never knew I wasn't relaxed though because I always had a smile when near him. Yes, Wednesday is my time with my HOV bereavement counselor. She is such a caring person. I sent a picture of Jim for the 'Light up a Life Event'. I will go but with someone. I will ask about that referral for a HOV massage therapist. I think my experience today was funny. I continue to have a protected casing around me and only let my true feelings out to a very few people. Our grief support group has helped me. Some things are still just too painful to put out on the board. In time. Anne

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Anne,

I love your sense of humor too!

Nats,

I admire your ability to try something new and not let age box you in. I wouldn't know where to start exercising...I'd be embarrassed to go to a gym...never having been in one, I wouldn't know what anything was or how to use it. I'd be intimidated to be surrounded by young people with fit bodies. But I walk every day religiously, twice a day. And I keep active as I have to take care of my place, no one else to do it! :) I guess shoveling snow, stacking wood, mowing the lawn, pruning trees, and chopping kindling are exercise. In the 1800s they had hard work and noone ever heard of a gym...they kept fit just getting through the day.

A couple nights ago I dreamed I bought a horse and learned how to ride him. It was very vivid and it felt weird to wake up and find out it wasn't true. Maybe it was my bodies way of telling me not to let my age limit what I do, that at my age I can still learn and try new things. Except skiing...I'm not taking up skiing at my age. :)

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Dear Kay,

I think that you are doing a great deal of exercising - reminds me of 'Little House on the Prairie" - you indeed are exercising. I like horses also. They are so majestic and so powerful yet gentle to be with. I used to love riding - I rode a horse called Buttercup when I was younger -much younger. :) I hope you are on Pinterest. I sent you an invite to visit me on the site. The site is very relaxing and I really like seeing what others have posted.

Tomorrow I see my HOV grief counselor for the second time. You see, I am very new to this grief journey even though it has been almost five months. Our HOV here in AZ has a service memorial that honors all those who have passed during the last year. We send in a picture of our loved one in and then they run a video during a service. I am somewhat afraid of going but I also am drawn to it. I will not go alone because it will be too painful. I really don't know what I would do if we did not have this grief forum. It has helped me. My heart breaks when I follow some of the posts to see what others are going through. I so admire the courage that is present. I believe that we do not survive as single people on this earth - remember 'No Man is an Island?' by Thomas Melton? I truly believe that we do not live here alone but need others. This site brings us together in a single purpose - we are all grieving and we all need to be heard. I think dreams are what keep us human. We can believe what we want to and yes, sometimes they do seem so real and that is all right. Anne

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Anne,

I did get your invite and hope to visit it later on today. I still need to view the white video you sent to me...sometimes I have time on my work break but I don't have a sound card at work, so need to view it at home. Last weekend was super busy as it was my birthday...I will still be celebrating this next week, in my family it goes quite a while! (Maybe because we didn't celebrate as kids, we do now.)

I agree with all that you just wrote. I honestly would have been lost, like out on a limb, if not for this place. It has been here for me time and again, and if I can pay it forward in any way, I want to. This place is a lifeline! I live so far from everything, many of you can take advantage of grief counselors, etc. but I live in the country with a sleepy little town nearby, and no city for 50-60 miles. With my long commute to work, the last thing I feel like doing is commuting for something else when I'm off. It is part of the price I pay for "country living"...but worth it to me. I derive so much from being around nature, seeing the trees, animals, it is incredible, it feeds my soul. I know that big cities have the museums, art, culture, and everything known to man, but I couldn't live there, without my beloved nature and animals. I LIKE having to stop for a horse or cow in the road! I LIKE being around all of the beauty nature provides and being five minutes away from a forest service trail. When my son was a kid, he got to build his own trail, how many kids get to do that? This place is so special to me...George got it, and felt as I did, another thing we connected on. I realize I won't get to live here forever, but I intend to enjoy the hilt out of it while I can!

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Hi NATS,

Good for you for working out. Remember what I said about our hearts - we only have so many beats in our lifetime and I'm not going to waste them on exercising. But I was only kidding. We need to stay healthy. Tell me more about the steps you are taking on your meditation. 54 is so young. I don't know how I'm going to react when I turn the big 70!!:o Anne

Enna,

I'm very surprised what working out has done for me, it gives me a new confidence I didn't have before and it surely helps with the daily stress this life places on us...many times while at the gym the younger people are not even close to the "being fit" as this "old guy" as they call me sometimes, I hear and see the reactions from many as I tone and workout, many seem puzzled at how my body has transformed since February when Brenda and I joined, we both were not overweight but as we all know as we age things go south and doing these routines we have both regained some of the youth we had, I sent my youngest son a picture the other day and he was amazed his "old man Dad" is almost in as good a shape as him, and I have had some of the youth ask me how I do it, then I explain it has taken dedication and hard work with a "no pain, no gain" attitude, many can not believe I'm 54 and Brenda is 58.

As for the meditation, this has became an interest to both of us as we have "signs" and "contact" with our spouses in suttle little ways, also watching a show on TV has drawn us to explore this phenomena. I have read we all have this gift many just have it more than others and it needs to be developed. I read material on this both in print and on-line and have made this part of my daily routine, it has became very intense at times. I will PM you with a few links to this type of meditation as I'm unsure about posting them on the forum as I do not want to offend anyone or stray from the guidelines here, if Marty reads this and approves of me posting public I will.

May Peace Be With You...

NATS

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I have gone to Marty's link on Grief Healing: After-Death Communication, NATS, and I have found several links to be helpful to me at this time in my journey. The medium, John Edwards, has some interesting readings. I have used his Lighthouse Meditations to relax me when I'm trying to place myself in a state of mind that will allow me to be open to whatever! I find that I am a very impatient human being. I want something, anything to happen right now. I so miss Jim that my mind just won't accept the fact that I'll never connect with him again until I leave my body to join him. I am a Christian so there are many factors that prevent me from accepting some of the theories that others believe in but that is ok. We are all individuals. Reading provides us with knowledge so I am spending much more time reading. Nurturing the mind and body is/has always been important to me. I will not allow myself to accept that I will not connect with Jim while I am physically here on this earth.

I am taking an online class from a renowned Hypnotherapist , Steve G. Jones, who is skilled in astral projection. We shall see.

For those of you who are interested in how my 2nd session with the HOV Grief Counselor went yesterday - will – all I can say is that if crying is cathartic well then I am healing. :D It is good to sit with someone who understands and listens and is just present. I have opened myself to the pain as so many of you before me have all ready done – I know I will get through this because this is what I am choosing.

One observation that I'd like to make about our grief web site - one never knows what words of encouragement mean to those who grieve – no matter what we are grieving or how long we have been grieving – words DO comfort and heal. Anne

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For those of you who are interested in how my 2nd session with the HOV Grief Counselor went yesterday - will – all I can say is that if crying is cathartic well then I am healing.

That's what I love about you Anne, your wonderful humor!

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My thoughts during Jim's last days with me . . . suffering with Alzheimer's disease –

One thing I need to say about this disease - if you know one person who has Alzheimer's disease then you know only one person. This disease is unique to each person who has has been diagnosed with it.

Alzheimer's disease robs us of what we've worked so hard to build our entire lives: our intellect, our personalities and our memories - those who have it are alive… but not really living.

"Dusk is just an illusion because the sun is either above the horizon or below it. And that means that day and night are linked in a way that few things are there cannot be one without the other yet they cannot exist at the same time. How would it feel I remember wondering to be always together yet forever apart?"

― Nicholas Sparks, The Notebook

This movie had a message for me and that message is expressed in my feelings here:

During his last few weeks on this earth I would look at Jim, feeling utterly empty. I didn't know what I was supposed to say to him. My life was in that bed. Please let him stay. Please let him stay.

At the end of the day it was about how much I could bear, how much I could endure.

Jim kept slipping, going away and coming back – going – coming. Actually he had been doing this for several years already. This is what Alzheimer's disease does to you. It is so cruel. I hate it.

Being together, we harmed nobody; being apart, we extinguish ourselves. So we stayed always close and together. This loss was slow and painful for me – over five years of decline. I never ever wanted it to end. I was happy for any moments with him whether it was in reality or not – to me he was still with me. And that is all that ever mattered.

I was right in the thick of grief watching Jim as he slipped in and out of reality. He would look at me with such loving eyes not being aware that anything was wrong. So we talked like nothing was wrong – if he wanted it to be summer – it was summer – if he thought he was in IL where he grew up and spent most of his life – then we were in IL. If he thought it was Christmas then we sang carols. His reality was not my reality but he did not know this only I did. So my grief was in full swing. It was always ok with me because he was still with me and I could touch him and he could look and me and tell me how pretty I was. I cried and thanked him.

Now he is gone. He slipped away with no pain, looking at people who visited with a smile, not really knowing that anything was wrong. He placed his hand on my face and told me I was pretty the last time he was speaking. I said thank you and I love you. That night I remember I cried for hours.

Death forces us to look back and acceptance involves slowly turning our bodies around to look forward. I know that is going to be my journey now. I am afraid and I do not know where I'm going but somehow I do not feel alone. This grief support group has helped me express my feelings. I only hope I'm not expecting too much from you. I know you 'get it.' I have etched that in my mind. And I do not feel ashamed to place this all out on your shoulders and help me along. Hugs are good for me. I know I am not the only one who is/has taken this journey.

Forgot to add this link – it was one of the songs I used when I put together a picture video for all the kids celebrating the life of their father. When he was still alive. This song was written by Glen Campbell after he found out he had Alzheimer’s disease. Needless to say it spoke to me.

"If you begin a new chapter of life, you carry the person you lost along with you." This is what I'm going to hold on to.

Jan and Kay - thank you for your kind words. I know you 'get it.' Anne

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Anne (Enna)

What a wonderful post. It is 7 am here in the UK and I'm on a mini holiday at Center Parcs with my little family. I have just made a coffee and am in bed with the wo year old. No one else s stirring. I can't respond right now but I just wanted to reach out to you and say how much that post meant to me. Since arriving here I have had many ( private) stabs of pain because Pete should be here with his family. I don't share them with the others as what is the point in bringing them grief too. But here in this wonderful community I know I can. Must fly now as I should get people a morning cuppa. But thanks Anne. Jan

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Anne,

Beautifully written. I know it's not the same, losing your mother to Dementia, as it is losing your husband to it, that must be the hardest thing in the world. But as I watch my mom deteriorate, I can relate to what you speak of. I felt jealous yesterday because my sister went to visit her and she knew her. The last two times she either thought I was my sister, or didn't know who I was. That hurts. I know it's not her fault, it's this blasted disorder! But the human side of me wonders why she knows my sister and not me. I've always been there for her, I live 1 1/2 hours from her, not two like my siters, so have been able to see her more often. I know this disorder knows no rhyme or reason, and it's futile to try and make sense of it, but still, there it is.

You say your husband didn't know anything was wrong. I think my mom knows something is wrong. I had a friend die from this and in the beginning, she knew something was wrong. When at last she reached the further stages, she didn't seem to know and it was easier on her. I wonder...I hope, that is how it'll be for my mom. Not having her here with me, we don't float in and out of the knowing/not knowing/knowing/not knowing...she either knows me when I visit, or she doesn't. It's weird. I hope this doesn't go another five years, that seems unbearable to think about. I know you can't look at the whole of the future, you have to stay in the now, one day at a time. I know that theoretically, but today that seems hard...the future is so uncertain, really, for all of us, and it's both hard to look at, and hard to ignore.

I don't know how any of you got through Alzheimers...even though my mom'd Dementia is Lewy Bodies, it's very similar. Only they don't have medicine to help it like Alz., the med. that helps Alz. patients actually worsens Lewy Bodies patients in 1/2 the cases so they don't administer it. So maybe it'll escalate and end sooner, I don't know, no one talks about that.

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My dear Kay,

I would like to respond to your kindness about my thoughts about Jim during his journey with Alzheimer's disease. Thank you.

Remember, if you know one person who has ALZ then you know only one person. It is a disease that is unique to each person.

I am so sorry that you felt 'jealous' because your mom knew your sister and she did not recognize you, I am so sorry that you are 'hurting.' I have come to know you through this web site as a caring, loving person and I can't imagine how much it must hurt you that your mom does not recognize you. Our minds are complicated. We only will know the answer to what exactly goes on in the mind when we are no longer here in this world. You know, the only way that anyone can know if someone really does have Alzheimer's disease in through a biopsy. I have read all your posts and I hear the struggle you have had all your life with your relationship with your mother. I am sorry that she was not capable of giving you the love that you so deserved as her child. And I know you say that you understand that she has had a sickness – never-the-less, it still must tear you apart knowing that she will not be long for this world and you still have not felt the love from a mother that you so deserve. I am so sorry for that. I truly hope that what you believe about Alzheimer's disease is what it is. I can only tell from first hand experience that I think a loved one really does not know what is happening to them in the later stages of Alzheimer's disease. To them, all is well in the world; to them, the world is just fine and there are no problems; to them everything is all right; to them there are no worries; to them, their reality is all that matters because they can't reason, discuss, or even understand that something is really wrong. I am grateful for that with my Jim. He had the diagnosis of 'age related' Alzheimer's. This is the most benign and simple form we were told. I was grateful for that. Jim remained a gentle, loving person - no anger, no outbursts. I will always be grateful for that. I would much rather suffer the pain than have him be aware that something is really wrong and not be able to understand it!! It is so easy for us to rationalize about 'staying in the now' but in reality – that just doesn't happen. Lewey Bodies as you know is a form of dementia. I am sorry that your mom has been diagnosed with this form of dementia. This type of Alzheimer's can show mental decline, there can be hallucinations and the fluctuation of being in and out of alertness are present. Muscles can become rigid and tremors can be present. It is as unique as each individual. All that is going on in your mom's health today has NOTHING to do with you. You do not have to second-guess yourself about what a loving daughter you have been. All of us who have read your posts know that you are a kind, caring, loving, and beautiful human being. Thank you for sharing your person with those of us on this web site. We are here for you just as you have been for others on this site for many years. Our arms will continue to be around you just as yours have been around us during our journey through grief. It matters NOT what the loss – we all grieve and deserve hugs. Mine to you, Kay. Anne

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Anne, it is as I thought then, they're aware something is wrong in the beginning, and the it progresses to where they aren't aware, and it's a blessing for them...hard for us, but easier on them by then.

I long ago accepted that my mom was not capable of being a proper mother or human being to any of us. Yes, I would have like things different, but it is what it is. Recently I have come to terms with it more since learning about her Lewy Bodies and realizing this is just a person that has been plagued with something or another all of her life, and it does suck to be her, and I have to have pity and compassion for her in these latter days of her life. It does no good to get angry over the things she's said and done over the years, it doesn't change anything and I have no idea what she could or could not have helped, I have learned to just leave that up to God. I am thankful I am not her judge or anyone else's!

I have come to appreciate your friendship, you are a very caring person who has been through a lot, I'm sure that has impacted your perception and heart!

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I have come to appreciate your friendship, you are a very caring person who has been through a lot, I'm sure that has impacted your perception and heart!

Thank you for being you. I am a much more sensitive person for having lost the love of my life. Nothing has been so painful in my life. Anne

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Days leading up to October 25th – five months – 'shaping my new existence' as author Lou LaGrand writes about in the article Marty sent out this morning. How fitting. I'm choosing to 'reinvest' in my new life. And I will learn to 'love in separation' as I 'adapt to this different environment.' My journal entry coming up to five months: My pain is so raw my Love – I am in full pain – I miss you so much – how am I to go on – what words are there to heal? I do not want you to be DEAD but I know you are – my heart is BROKEN. Words do not comfort me. I must decide to accept this pain and slowly move on in my life – I DO feel your presence – you ARE with me - at times I am very CALM – and other times I am hurried – to do something – anything – I am searching - I think what I am searching for will come to me in meditation, poetry, and music – I will come out of this darkness because that is what I choose. I choose to move on to a new beginning because what we had is gone but you will always be with me breathing on me, helping me to know that you are near. I am AFRAID of the triggers that I now know will come and go. I want to be strong – that is what you would want of me. I am not the same person. There are people who know what this journey is all about. I hope I can accept their hand and gain strength from them. We are assured that we will NOT have to go on this journey alone. I am counting on that. I demand it for as I've said before, "No Man Is An Island." :)

I have ever so slowly gotten off the treadmill I have been on for the five years of your illness. I am slowly entering into another phase of this journey – I will keep searching this – I need to believe that we WILL be together again – only in a different dimension.

I am doing a few positive things to move on – you know how much I'm attached to the computer! <ahttp://www.griefhealingdiscussiongroups.com/uploads/emoticons/default_smile.png' alt=':)'> I have started to piece together several Author-Streamed videos with the main theme being loosing a loved one. This seems to help me since I'm always thinking of you. I hope to upload them to YouTube soon in hopes that my journey will help someone else through theirs. I love you and miss you so much. Your Anne

There are many of us on this grief journey coming up to the FIRSTS this year – first holiday, first anniversary, first birthday, first, first, first… I almost hate that word. Again we struggle with WORDS. Many people here on this web site (fellow grievers) have shared suggestions as to what we will be facing. I know everyone remembers their FIRSTS - The pain and anguish - It seems to me that you and I have to do what is in our hearts. If we want to stay home and cry then that is what we do. If we want to do something different then that is what we do. If we want to pretend that our loved one really isn't dead than we do just that. What harm will it do to pretend for a moment that the one we love so dearly is still with us – as long as we remember that…

I am rambling, but I think you 'GET IT'!! You are all beautiful people and each one of us WILL come through this tunnel. It just might take some of us a bit longer.

PS – I really don't know where this post is coming from – I am not this person – I share with very few people and I know that most people have long moved on with their lives and some even think that we should too. However, I think I have found a place that allows me to grieve with others and does not judge me or tell me to move on with life. You are all in my heart. Anne

Please take a minute to read Marty's post on the main page under 'new content.'

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Dear Anne, I know that Thursday feels like a huge day...those one month anniversaries, especially early on, open the wound again...especially since the thin thin membrane protecting it is so fragile. I still in month 31 am very aware of the 27th of every month. Sadly (or not), I am also even more aware of the 22nd of each month as we were married on the 22nd and celebrated every single month for all the years of our marriage with cards, dinner out, etc. I will be thinking of you on Thursday. You have really shared a lot of yourself on this site and I honor that especially since you said this is not who you are. Yes, you have found a place where you can grieve as you wish and as long as you wish. NO one will tell you to move on.

Peace,

Mary

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Mary,

You always know just what to say. Thank you for the rays of hope you send my way. They are so appreciated. Today I finally sat out on the patio and had coffee. Those of you who know how I've been struggling with this one will understand. I removed the link because too many were checking it out. So we have to watch it on YouTube. I'll send the link later. Anne

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Anne,

Thinking of you today...

Some people say the second year is the hardest...perhaps because they had expectations that the first year with all of its firsts was over and they expected it to be better than it was. But I found the first year the hardest. Once I made it through the year of "firsts without" I felt a sense of triumph that I had made it that far! Esp. since I hadn't realized I would make it through it at all, not at first...when I learned he was dead, it was such a shock, it affected every avenue of my being and I did not see how I would survive it at all...or even if I wanted to. But the sense of survivor in all of us is strong, even if we aren't at first aware of it, and we do make it through it, little by little, with the help of these folks here and all of the other supports we incorporate into our lives. We begin to learn and grow as people and find inner strength we never knew we had. We learn to reach inside of ourselves and find the loved one we lost is still with us, only in a new form.

The first birthday without him, first anniversary, first Thanksgiving, first Christmas, first New Years, etc. etc. they are all a feat to get through...but we do. Some people here share what they did to get through the day and those ideas help us form our avenue of approach. Releasing balloons, writing a message, lighting candles, carrying on same traditions, starting new ones, whatever we feel is the best way for us...that to us is the best way.

My heart is with you today.

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Anne

I agree with EVERY word of this. I wish we weren't separated by so many miles of ocean and land but in a way we are not. We speak to each others hearts. I've looked at other forums but none can match this one for being populated by people who connect so well. Thanks. Oh well, another day. It's seven am here. I'll be back later but that's. I shall keep that in my ever expanding grief folder. Jan

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