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robbed of Rob


Pim

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In February 2018 my (gay) partner Rob was diagnosed with Progressive Muscular Atrophy (PMA) which is like ALS disease. On August 8th of that same year he died when I was holding him in my arms in a nursing home.

Words cannot describe what we have gone through and what I am feeling since he died.

My poor darling Rob. I loved him so much. We had this kind of intimacy, this feeling of complete understanding, and full acceptance of each other. We loved each other so much.

It was not just the two of us, it was all the activities we did together as well: walking, cycling, planning and having holidays, and then on quiet nights, sitting and cuddling on the couch and reminiscing on those wonderful activities.

Every moment spent was Rob was kind of magical. I don't make this up now, we experienced it then. We were so happy and so fortunate, and we did appreciate this. Often we told each other how blessed we were, to have found such a love.

The life expectancy for PMA was to be between 6 months and 20 years. Rob was right at the lower end of the scale. He deteriorated so fast. We even tried stem cell based therapy in Germany (which we had to pay for ourselves) but Rob went from home to hospital to nursing home. Me and our friends and our families, have done everything to make life as pleasant for him as we could, and he enjoyed life almost until the end because that was how he was. But on that fateful Wednesday he died of respiratory failure, a common thing for PMA and ALS patients.

And now alone. And I am so sorry, so upset, so non-accepting. And I am not just grieving for myself. I am grieving for him as well. Despite the fact that either he is dead and dead is dead, or that he is in a much better place, I am so sorry for Rob. He deserved so much more. We were partners for 15 years but only lived together for less than 7 years. I mean, you sign all these documents: a wedding certificate, the deed of the apartment, with the intention to live together for decades. I find myself walking through the apartment, crying and saying out loud: "Didn't Rob have a right to live here as well?".

Of course he had this right, but this disease does not take into account those things or the fact that Rob was the most gentle, kind, loving person you could wish for.

I miss him so much. I cannot stomach it. I cannot accept it. My poor darling. You deserved so much more. How on earth can I come to terms with this loss? All these memories, also when I walk around in the neighbourhood where we walked and cycled so much, they are beautiful but also so very painful.

I consulted a medium. I think she was a fraud (either wittingly or unwittingly). I did get some kind of energy boost though. Well, 90 Euro's is not too much for such an experiment. A professional psychologist would charge you more.

So here I am, feeling sorry for Rob and feeling sorry for myself. A little over five months now. I have lost Rob, I have lost everything we did together, and I have lost my future. I cannot envision serious dating again. I am 50! This is the time when I wanted to be settled and spending years and years in boring bliss with Rob on the couch, watching the same old detective DVD's again and again.

Sure there are friends and family who support me. And I joined a Dutch grieving forum. And I am grateful to all these people. But it's not the same, is it. It never is.

Yes, it is better to have loved and lost, than to have never loved. But it hurts so much.

 

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What you wrote is heart so wrenching and I can relate so well to what you are saying. I’m a woman about your age and lost my companion only several weeks ago. He was, in my opinion, way too young to die. He also suffered struggled with an illness, but it had a high recovery rate, but not for him. It seems so unfair, and I grieve for him, because he had spent the last two years on a magnificent project that he never had time to complete. He lived for it. That’s why I feel so bad for him and also because his death was especially physically brutal and painful. I also grieve for myself, because our relationship of 12 years was always so magical. I’ve loved very deeply before, but never have stayed “in love” this long. Usually that feeling wears off quickly and I’m a creative person who thrives off such “magic.” Where every conversation gave me wings and everything we did had that touch of the extraordinary. I’m the kind of person who needs that in my life to thrive, even in my work (creative) and am now desperately trying to figure out where to find it outside of romance. Because, at my age, I just don’t want to be with anyone new. I, too, had very comfortable visions of spending “Golden Years” with him (now that I’m approaching old age). We had just been talking about that. Everything now feels completely shattered. And it is. Life will never be the same and I see years of depression ahead of me. I never did take loss too well.  I’m in a very deep dark abyss haunted by memories, but, just as you say, especially by memories that will never be. Just completely so lost and in constant agony. I catch the scent of him in the air, hear his beautiful voice, remember his lofty thoughts. He was such a philosopher. I lost faith in religion a long time ago and have lost faith in life, too. I know what you are going through. I can’t see ahead of me, just keep blindly walking on. It is just one long, grey, monotonous day after another, pierced only by spasms of pain.

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3 hours ago, Pim said:

And I am not just grieving for myself. I am grieving for him as well. Despite the fact that either he is dead and dead is dead, or that he is in a much better place, I am so sorry for Rob. He deserved so much more.

 

47 minutes ago, Pmarie said:

I’m in a very deep dark abyss haunted by memories, but, just as you say, especially by memories that will never be.

I get the feeling that a lot of family and friends that have reached out to me and even my wife's family... they are focused on what they lost and what they think I lost more so than the person that was actually lost.  The "I'm sorry for _your_ loss" and the "thoughts and prayers are with you (me)" comments put the focus on the person and people grieving.

My grief has significantly more to do with the fact that I believe my wife "deserved so much more" and the "memories that will never be" than what I lost.  Yes I did lose my precious wife bu what hurts me most is what SHE lost.  Everything that she wanted to do especially motherhood, the places she wanted to go visit, the hard work she did most of her life, all the money she saved for her future, all of that is lost.  I wish people, that are currently not grieving, understood the depth of that sadness.

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So very, very true, and a subject never really touched on, or discussed, even in counseling or published books about grief! Most of all, I feel a bitter rage that my lost loved  one was cheated out of so much. He had retired early to work on what was to be his life’s work, the “real work” of his existence, something he believed in and had wanted to do since youth. Finally, after so many long years of working,  he had enough money saved and time (he thought) to do this. The last several years of his life he spent hours and hours each and every day, so disciplined, to make this dream come true. It was no small dream, he was brilliant, and it would have been a gift to the world. All he ever did was talk about it. He envisioned himself speaking about his project at universities all over the world. And he would have done it! He was so close to being there. I can’t imagine what he felt like on his deathbed, it was his reason for living. And almost finished. No one else will ever be able to continue on with his project like him, as he had done years and years of research. It would have been of great benefit to humanity. That, and our future memories that he and I will now never share, hurt me most. Death is a destroyer of dreams. So, I perfectly understand how you feel, because your wife really was cheated of her personal dreams that meant so much to her. One can feel how much you deeply love her, because you are putting her own losses even above your own. My deepest condolences, this is a hard walk.

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@Pim..i am touched by ur story..it moved me to tears...its almost like i could see Rob and the wonderful person that he was - by the way u described him and ur beautiful relationship. Saying a prayer for u and Rob - that is something that we..the broken ones left behind can do...

Sent from my vivo 1802 using Tapatalk

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12 hours ago, loveboo said:

Everything that she wanted to do especially motherhood, the places she wanted to go visit, the hard work she did most of her life, all the money she saved for her future, all of that is lost.

This is so true, so many dreams lost.

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17 hours ago, Pim said:

Yes, it is better to have loved and lost, than to have never loved. But it hurts so much.

No truer words.  I am so sorry you lost your partner...my husband and I were cut short all too soon also, it's been 13 1/2 years since it happened.  I'm glad he didn't suffer longer but it seems the suffering transfers to us, doesn't it.

It took me ten years to write this...when he first died, I didn't see how I could live a week, let alone the whole rest of my life, and in my family, we live into our 90s.  The best piece of advice I got was to take a day at a time.  Whenever I find myself worrying about the whole "rest of my life", I go back to TODAY, and that helps, otherwise my anxiety would stay through the roof.

TIPS TO MAKE YOUR WAY THROUGH GRIEF

There's no way to sum up how to go on in a simple easy answer, but I encourage you to read the other threads here, little by little you will learn how to make your way through this.  I do want to give you some pointers though, of some things I've learned on my journey.

  • Take one day at a time.  The Bible says each day has enough trouble of it's own, I've found that to be true, so don't bite off more than you can chew.  It can be challenging enough just to tackle today.  I tell myself, I only have to get through today.  Then I get up tomorrow and do it all over again.  To think about the "rest of my life" invites anxiety.
  • Don't be afraid, grief may not end but it evolves.  The intensity lessens eventually.
  • Visit your doctor.  Tell them about your loss, any troubles sleeping, suicidal thoughts, anxiety attacks.  They need to know these things in order to help you through it...this is all part of grief.
  • Suicidal thoughts are common in early grief.  If they're reoccurring, call a suicide hotline.  I felt that way early on, but then realized it wasn't that I wanted to die so much as I didn't want to go through what I'd have to face if I lived.  Back to taking a day at a time.  Suicide Hotline - Call 1-800-273-8255
  • Give yourself permission to smile.  It is not our grief that binds us to them, but our love, and that continues still.
  • Try not to isolate too much.  
  • There's a balance to reach between taking time to process our grief, and avoiding it...it's good to find that balance for yourself.  We can't keep so busy as to avoid our grief, it has a way of haunting us, finding us, and demanding we pay attention to it!  Some people set aside time every day to grieve.  I didn't have to, it searched and found me!
  • Self-care is extremely important, more so than ever.  That person that would have cared for you is gone, now you're it...learn to be your own best friend, your own advocate, practice self-care.  You'll need it more than ever.
  • Recognize that your doctor isn't trained in grief, find a professional grief counselor that is.  We need help finding ourselves through this maze of grief, knowing where to start, etc.  They have not only the knowledge, but the resources.
  • In time, consider a grief support group.  If your friends have not been through it themselves, they may not understand what you're going through, it helps to find someone somewhere who DOES "get it". 
  • Be patient, give yourself time.  There's no hurry or timetable about cleaning out belongings, etc.  They can wait, you can take a year, ten years, or never deal with it.  It's okay, it's what YOU are comfortable with that matters.  
  • Know that what we are comfortable with may change from time to time.  That first couple of years I put his pictures up, took them down, up, down, depending on whether it made me feel better or worse.  Finally, they were up to stay.
  • Consider a pet.  Not everyone is a pet fan, but I've found that my dog helps immensely.  It's someone to love, someone to come home to, someone happy to see me, someone that gives me a purpose...I have to come home and feed him.  Besides, they're known to relieve stress.  Well maybe not in the puppy stage when they're chewing up everything, but there's older ones to adopt if you don't relish that stage.
  • Make yourself get out now and then.  You may not feel interest in anything, things that interested you before seem to feel flat now.  That's normal.  Push yourself out of your comfort zone just a wee bit now and then.  Eating out alone, going to a movie alone or church alone, all of these things are hard to do at first.  You may feel you flunked at it, cried throughout, that's okay, you did it, you tried, and eventually you get a little better at it.  If I waited until I had someone to do things with I'd be stuck at home a lot.
  • Keep coming here.  We've been through it and we're all going through this together.
  • Look for joy in every day.  It will be hard to find at first, but in practicing this, it will change your focus so you can embrace what IS rather than merely focusing on what ISN'T.  It teaches you to live in the present and appreciate fully.  You have lost your big joy in life, and all other small joys may seem insignificant in comparison, but rather than compare what used to be to what is, learn the ability to appreciate each and every small thing that comes your way...a rainbow, a phone call from a friend, unexpected money, a stranger smiling at you, whatever the small joy, embrace it.  It's an art that takes practice and is life changing if you continue it.
  • Eventually consider volunteering.  It helps us when we're outward focused, it's a win/win.

(((hugs))) Praying for you today.

 

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On 1/13/2019 at 11:57 PM, Pmarie said:

What you wrote is heart so wrenching and I can relate so well to what you are saying.

My dearest Pmarie, thank you so much for your reply. I think I understand a lot of what you wrote: you feeling bad for him not just for yourself, how you also had such a magical relationship, and being a creative person yourself how you thrived on this once in a lifetime love. Isn't is grossly unfair that such loves are shattered by death. There should be a law against it...

From what I read, I understand that your husband was really a remarkable person, a gift to the world. Why oh why was that gift taken away? It saddens me to tears.

On 1/14/2019 at 1:14 AM, loveboo said:

I get the feeling that a lot of family and friends that have reached out to me and even my wife's family... they are focused on what they lost and what they think I lost more so than the person that was actually lost.

This ties in with the above. It never ceases to surprise me that people are just sorry for me. And I think to myself: "Yes but what about Rob!? Is he not important anymore?"

I read your story loveboo. It's so sad how your wife passed away after childbirth. You must miss her terribly. I am so very very very sorry for you and for your wife. And for your baby girl who will never meet her mother. It's just too sad.
I also read about your guilt feelings. As you will most likely know by now, this is normal. I too had my share of feeling guilty. But in the end we both knew, deep down, how much we loved each other and I have no doubt that this was also true for you and your wife.

 

I am glad to be on this forum, being able to write these sentences and read your stories. There were more replies than the ones which I just touched upon, but please understand that I am still very tired from grieving and trying to write in English to my best abilities is also tiring (and it's the end of the day in my timezone). So I will come back to all those who were so kind to read my story and post a reply. Please know that it is highly appreciated.

Love, Pim

 

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Thank you for your reply, Pim, and your English is excellent. One would just presume it’s your Native language, you write very eloquently and with such deep emotion. You speak straight from the heart. Not only has my reality been suddenly altered, a very surreal experience within itself, but my whole future has also been completely erased. And I know it’s not just a feeling, but all that I was expecting (and looking so forward to) is definitely gone. Now the future seems unfamiliar, cold, and unwanted. Scary, too. I have beautiful past memories that I will keep forever, but the end of their road is right here. At the dead-end (pardon the pun). I don’t know where to go. Having him in my life was so psychologically healthy for me  — even when I was off doing something alone — I never for one moment felt alone, as long as he was living. I guess I was very lucky to have what I did, some never do. How long we search for such special relationships in our life, which are so few. Only to have it vanish and disappear like a dream. Whenever I think of the horrendous physical pain he endured in the end, or how cheated he must have felt knowing his life was over (while he had almost — almost —  touched his lifelong dream), I feel a rage towards fate and the universe. His eyes looked so sad and shocked. His expression never leaves me. He tried so hard, had gone through so many painful procedures, fought so valiantly and thought he was going to survive  — as he rightly deserved. What a HUGE loss for HIM!!! You are so right about how many people who try to console are only thinking of the griever, but leaving out the deceased. Just one week after his unexpected passing. a friend told me I now need to “move on!” That just felt so very very disrespectful to the one I’ve lost, like he means nothing in this world anymore. I think you’ve brought up a major point that’s been largely overlooked in society. What about the deceased? What about THEIR loss???

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16 hours ago, Pmarie said:

Just one week after his unexpected passing. a friend told me I now need to “move on!”

That's insane!  People in our society just haven't a clue how to respond to death.  You're right, what about HIS loss, too!

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On 1/14/2019 at 9:56 AM, brynel said:

@Pim..i am touched by ur story..it moved me to tears...its almost like i could see Rob and the wonderful person that he was - by the way u described him and ur beautiful relationship. Saying a prayer for u and Rob - that is something that we..the broken ones left behind can do...

Dear brynel,

thank you for your sensitive comments. I read your posts and I am truly sorry that you lost your husband and as you put it, your best friend. I can identify with that statement so much.
Your prayer is more than welcome. I am touched by your remark that this is something that we, the broken ones left behind, can do.

 

On 1/14/2019 at 2:47 PM, KayC said:

No truer words.  I am so sorry you lost your partner...my husband and I were cut short all too soon also, it's been 13 1/2 years since it happened.  I'm glad he didn't suffer longer but it seems the suffering transfers to us, doesn't it.

It took me ten years to write this...when he first died, I didn't see how I could live a week, let alone the whole rest of my life, and in my family, we live into our 90s.  The best piece of advice I got was to take a day at a time.  Whenever I find myself worrying about the whole "rest of my life", I go back to TODAY, and that helps, otherwise my anxiety would stay through the roof.

Dear KayC,

you have been active on this forum for quite some time which I applaud. It took me some time to find your post containing your story but I managed to find it. Your most beloved George passed away and then on top of that you had all these other bad things happen to you.
Now, it's 13 1/2 years later and here you are on this forum, helping others, not letting the grievers down. I take my hat off for you.

As you state in one of your posts, the missing him part never ends, but the journey evolves. Beautifully written.

Sometimes I thought when going to bed, please God, don't let me wake up in the morning. But now I feel I will continue the journey, to honor Rob, to honor myself, to honor all of us here on this forum and to honor their loved ones who so sadly passed away.

Please KayC, give me some more strength.

 

Love, Pim

 

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Usually you can find someone's backstory by going to their profile page, then going to the very beginning of their activity, it should be a post or two in.

This is such an evolutionary process...in the beginning I wanted to die, didn't see how I could live and I figured nothing would change...the circumstances don't change, but we can get better at dealing with them as we begin to learn and adjust.  These forums really do make a difference, people share what has helped them, we share our thoughts and feelings, and it all helps.  We share books and articles, websites, things that have spoken to us, but most of all, we share our hearts, our journeys, sometimes we think, if they can make it, maybe I can.  It helps, going through this, knowing we aren't alone in it.  Others know how we feel, they're living it too.

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My Dearest Pim,

I read your post and my heart aches for you in so many ways. I am sorry for the loss of your beloved, Rob. I am sorry for the pain of having to continue alone and for the pain of the loss of what you thought the future would be. I think that it the hardest—losing that “picture” of what we thought our future was going to look like.  

I lost the love of my life in August 2018.  We were married 18 years.  He was a kind, caring and beautiful man. We loved the outdoors.  We gardened, fished, hunted, traveled.  I had just retired in January and he had just retired in June. We were looking forward to a life without schedules.   He had been healthy, took no medications, no high blood pressure, walked daily. He died very suddenly and unexpectedly. I woke up at 4:30 am and he was not in bed. Thought he was up reading but went to check on him.  Found him sitting on couch, cold.  Just like that.......he was gone.  Massive “widow maker” heart attack.  Our future was suddenly gone. Our travel plans were cancelled. The list of things he wanted to do in 2019....will not be.  My heart is broken. I hate living alone again. I think of the grand babies who will never know him.  

Thru all of the heartache, I have learned these things:  Life is a gift; it is not promised; it is not guaranteed. The pain of grief is caused by great love and if I had to do it all over again...I would. My life with him was worth it.  He influenced who I am today and I am a better me because of him. That is one of the greatest truths there is.  We are all heading toward death and because of this, I must live a life that is intentional! I believe there is a God and he will use our grieving hearts to touch others. I look for a Godly purpose in everyone I come in contact with now. I take life one day at a time. Some days I am strong! Some days I miss him and am weepy. That is okay. I know he would want me to go on, to find joy in life. 

I have a picture on my refrigerator. It is of a beach and the sea washing in over the sand.  It says: “Sometimes you have to let go of the picture of what you thought life would be like and learn to find the joy in the story you are actually living.” 

Even though you are hurting, make it a priority to connect to people. We need each other. We need community. We need to strengthen one another and build one another up. Your life still has a purpose.

Laurie

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5 hours ago, LaurieB58 said:

“Sometimes you have to let go of the picture of what you thought life would be like and learn to find the joy in the story you are actually living.” 

I like that, and good advice for us all.

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“Sometimes you have to let go of the picture of what you thought life would be like and learn to find the joy in the story you are actually living.” 

Besides knowing my partner suffered a brutally painful death and that ALL of his own dreams were taken away forever, the paragraph above best describes what truly haunts me. I had finally imagined I had it figured out, knew exactly what I wanted for the rest of my future, and felt so very grateful for it. Now everything is suddenly completely erased and permanently over, before I even started. Where to go from here, without fear?

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Is it erased and completely over, or is it just continuing in a different way?  That brought to mind a discussion we had in our grief support group a while back on this very topic, which came from What's Your Grief.

What it Means to ‘Change Your Relationship With Grief’

 

There are things that you get over in life. For example a cold, your first breakup, or an argument with a good friend. More often than not, these things happen, they cause temporary misery, maybe you learn from it, and then you let bygones be bygones. Many experiences follow a similar pattern and with good reason. There are things we can and should leave in the past for the benefit of everyone, just imagine how much pain and negativity we’d all carry around if we could never forget and move on.

That said, it is a mistake to think that all painful experiences can and should be gotten over. There are times when such a shift simply isn’t possible – people can’t always change the way they think, feel, and behave simply because they want to. It’s common to think that, in these instances, one can go to therapy or take medication and be cured of these problems, but many people who’ve experienced things like serious hardship, trauma, addiction, and psychological disorder will tell you that healing isn’t about putting these experiences in the past, rather it’s about changing their relationship to the related thoughts, memories, behaviors, and emotions that exist in the present.

There are also times when ‘getting over’ something or ‘forgetting’ isn’t even desirable, such as getting over or forgetting about a deceased loved one and their ongoing absence. Still, many people mistakenly think that grief is something that can and should end at some point. Those who understand grief in hindsight may think this is a foolish mistake, but I would argue it’s common and understandable considering how little people know about grief before experiencing it. Especially those who live in societies where people are quick to believe that grief runs a linear and finite course and, as a consequence, encourage grieving people to push forward and let the woes of the past disappear like water under the bridge.

The reality of grief is that it often stays with you until the day you, yourself, die. For those who think of grief as being all negative emotion, I can see where this may seem unmanageable, but rest assured the impact of grief changes over time. As you change your relationship with grief – by changing how you respond to, cope with, and conceptualize grief – you will likely also find hope and healing. If you think about it, grief is one instance where there is a strong benefit to accepting its ongoing presence in your life because doing so creates more room for comfort, positive memories, and an ongoing connection with the person who died.

I understand this progression because I’ve experienced it, but I’m sure it can be difficult to believe if you haven’t. Initially, I thought about writing a post titled something like ‘5 Ways Your Relationship With Grief Changes Overtime’, but then I changed my mind. Grief is unique, relationships are unique and so your relationship with grief and with the person who died will evolve in a complex and nuanced way.  So, instead of generalizing and categorizing, I’m going to share how my relationship with grief changed over time.  At the end, please share your own insights about how your relationship with grief has or has not changed in the comment’s section.

At first I tried to outrun, wait out, hide from, and ignore grief.

Eventually, I realized my grief wasn’t going anywhere so I could either run from it forever or give in and experience it.  Once the cloud of grief consumed me, it was hard to see or feel anything else.  This sucked but only slightly more than the running.

In the early days of grief, it felt like all the light had been drained from the world and everything was dark.  But as the fog of acute grief thinned, a little bit of light crept in and things started to look a little less scary and a little more manageable.

I grew less intimidated by my grief and increasingly confident in my ability to handle its ups and downs, twists, and turns.  Once I was able to look grief head on, I realized it’s made up of both good things and bad.  Grief grows from the same seeds as love so after someone dies, one seldom exists without the other.

Over time my relationship with grief has changed.  I see it now as something as nuanced, complex, and beautiful as my relationships with those who have died.  Though its ongoing presence is sometimes challenging, I embrace it because it’s a source of love and connection with those who have died.

---What’s Your Grief

 

My Footnote:

At first I was in shock, terrified, anxious.  Friends disappeared, adding to the hurt and confusion.  I felt alone, abandoned and didn’t know a roadmap through this.  I tried rebuilding my life but was thick in grief fog, no clarity of thought and everything I tried was disastrous.  It took much time to process my grief, but I did, through allowing myself to feel the emotions, pain and all, and not trying to cover them up or rush through this.

I found that grief is not 100% negative, but there’s benefits to having gone through this.  I began to look at life and death differently.  Rather than hating my loss and grief, I began to see the benefits of  having experienced this.  I became more empathetic, more able to help someone else going through it (comforting with the same comfort God has comforted us), I began to appreciate each day and value life as a gift and live in the present moment.  I found purpose again. 

I’ve discovered that grief isn’t for a set period of time, but is with me for life, although it evolves throughout my journey and changes form.  I’m no longer afraid of it, it has become my constant companion as I’ve learned to coexist with grief.

Little by little I’ve built a life I can live.  Finding balance, interaction with others, and solitude, time with my furry family.  Activities, not to crowd out the pain, but to experience life even with its changes.

One of the benefits as I’ve had to tackle life and its decisions on my own is the confidence its built.

I’ve given myself permission to smile and realized that it is not my grief that binds me to him, but our love, and that continues still.

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KayC,

Very beautifully written.  My grief is still new and fresh but I allow myself to feel it whenever and wherever it surfaces. I will not hide it. I will not be ashamed of it. Grief is a process and I know it will change and evolve over time.  Like you, I believe my grief will continue, along with my love, until my life here is done. There is no shame in grieving a great loss for life. 

The first month, I couldn’t sleep at night. I was fearful of living alone in our home. But God has been good and has given me strength to no longer fear living alone. Relationships have changed. I don’t exactly fit in with our married friends anymore. A lot of women that I friendships with seem to already have an established “group” of women that they do things with, so I am hesitant to ask to join in. But I am blessed to have children, stepson, grandchildren, sister, mother living close by. My family has now become my focus.

Like you, I have become more epathetic. I now easily approach or contact those who have experienced loss. My perspective on life....and on death...has changed. Maybe I fear death less....because I know I will again be with my husband, my soulmate. I look forward to that.

I take every opportunity to tell those I love how much they mean to me. I take time to focus on living in today.

We all believe we know what our future holds. We have our dreams. We make our plans. But we truly are not in control of the future. 

 

 

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On 1/16/2019 at 12:07 AM, Pmarie said:

Thank you for your reply, Pim, and your English is excellent. One would just presume it’s your Native language, you write very eloquently and with such deep emotion. You speak straight from the heart. Not only has my reality been suddenly altered, a very surreal experience within itself, but my whole future has also been completely erased. And I know it’s not just a feeling, but all that I was expecting (and looking so forward to) is definitely gone. Now the future seems unfamiliar, cold, and unwanted. Scary, too. I have beautiful past memories that I will keep forever, but the end of their road is right here. At the dead-end (pardon the pun). I don’t know where to go. Having him in my life was so psychologically healthy for me  — even when I was off doing something alone — I never for one moment felt alone, as long as he was living. I guess I was very lucky to have what I did, some never do. How long we search for such special relationships in our life, which are so few. Only to have it vanish and disappear like a dream. Whenever I think of the horrendous physical pain he endured in the end, or how cheated he must have felt knowing his life was over (while he had almost — almost —  touched his lifelong dream), I feel a rage towards fate and the universe. His eyes looked so sad and shocked. His expression never leaves me. He tried so hard, had gone through so many painful procedures, fought so valiantly and thought he was going to survive  — as he rightly deserved. What a HUGE loss for HIM!!! You are so right about how many people who try to console are only thinking of the griever, but leaving out the deceased. Just one week after his unexpected passing. a friend told me I now need to “move on!” That just felt so very very disrespectful to the one I’ve lost, like he means nothing in this world anymore. I think you’ve brought up a major point that’s been largely overlooked in society. What about the deceased? What about THEIR loss???

Dear Pmairie,

thanks for your compliment. As for the rest of your text: every single word of it makes sense to me. May be Rob was not in pain (because Progressive Muscular Atrophy is not like that) but I too remember the sadness in his eyes, and, like your beloved, he fought and tried so hard. I do think that at the end there was acceptance on his side. But not on mine and I still cannot accept, cannot digest, what happened.

That someone told you to move on, is ridiculous. You loved your companion so much and he gave such meaning to your life. Then to say move on, it's like your love is to be left behind while you start to enjoy life again (which is rather hard after one week methinks).

Our loved ones will stay with us forever and that is how it should be.

Love, Pim

 

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On 1/20/2019 at 7:48 PM, LaurieB58 said:

I read your post and my heart aches for you in so many ways. I am sorry for the loss of your beloved, Rob. I am sorry for the pain of having to continue alone and for the pain of the loss of what you thought the future would be. I think that it the hardest—losing that “picture” of what we thought our future was going to look like.  

I lost the love of my life in August 2018.  We were married 18 years.  He was a kind, caring and beautiful man. We loved the outdoors.  We gardened, fished, hunted, traveled.  I had just retired in January and he had just retired in June. We were looking forward to a life without schedules.   He had been healthy, took no medications, no high blood pressure, walked daily. He died very suddenly and unexpectedly. I woke up at 4:30 am and he was not in bed. Thought he was up reading but went to check on him.  Found him sitting on couch, cold.  Just like that.......he was gone.  Massive “widow maker” heart attack.  Our future was suddenly gone. Our travel plans were cancelled. The list of things he wanted to do in 2019....will not be.  My heart is broken. I hate living alone again. I think of the grand babies who will never know him.  

Thru all of the heartache, I have learned these things:  Life is a gift; it is not promised; it is not guaranteed. The pain of grief is caused by great love and if I had to do it all over again...I would. My life with him was worth it.  He influenced who I am today and I am a better me because of him. That is one of the greatest truths there is.  We are all heading toward death and because of this, I must live a life that is intentional! I believe there is a God and he will use our grieving hearts to touch others. I look for a Godly purpose in everyone I come in contact with now. I take life one day at a time. Some days I am strong! Some days I miss him and am weepy. That is okay. I know he would want me to go on, to find joy in life. 

I have a picture on my refrigerator. It is of a beach and the sea washing in over the sand.  It says: “Sometimes you have to let go of the picture of what you thought life would be like and learn to find the joy in the story you are actually living.” 

Even though you are hurting, make it a priority to connect to people. We need each other. We need community. We need to strengthen one another and build one another up. Your life still has a purpose.

Laurie

Dear Laurie,

thanks for your beautiful comment and for sharing your story with us.

There are many similarities: the loss in August 2018, the kind, caring and beautiful man that your husband was, the love for the outdoors. I am so sorry that you expected to enjoy so many more good things with him and then suddenly he was taken away.

I respect you for your insight about life being a gift. Yes, the pain is the direct consequence of the great love you had. And like you, I would do it all over again and I think I am a better person thanks to having had Rob in my life for 15 years.

You are absolutely right that we have to connect to people. I try to do this as much as I can and as time allows.

Still looking for my purpose in life but maybe I will find it sometime in the future.

Love, Pim

 

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Dear Pmairie,

thanks for your compliment. As for the rest of your text: every single word of it makes sense to me. May be Rob was not in pain (because Progressive Muscular Atrophy is not like that) but I too remember the sadness in his eyes, and, like your beloved, he fought and tried so hard. I do think that at the end there was acceptance on his side. But not on mine and I still cannot accept, cannot digest, what happened.

That someone told you to move on, is ridiculous. You loved your companion so much and he gave such meaning to your life. Then to say move on, it's like your love is to be left behind while you start to enjoy life again (which is rather hard after one week methinks).

Our loved ones will stay with us forever and that is how it should be.

Love, Pim

 

Hello Pim,

Thank you for your kind response. I was told last night, yet again, in so many words to “move on” by yet another person... why should I sit in sadness, he said, when my beloved would not want that for me. Well, for one thing, he has been gone for less than one month!! I’m still deeply in love with him. One months time is certainly not going to make me suddenly “fall out of love!” It’s not strange at all to be in love with a dead person. What I find strange is the opposite. I still have all these wonderful and powerful feelings of love for him, but I just don’t know what to do with them, as he is forever gone. But the feelings are undeniably still there. How could they not be?  I wish people who have never lost someone like this would just finally understand and “get it.”  I have no “off” button that I can just press. This is a very long and slow process. How do we get others to understand and leave us in peace, to mourn in our own right way?

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I had an article addressing that but alas the website has been moved.  :(  I did find this one though and I think you'll find that the idea of moving on is quite preposterous!  Rather than moving on we learn to incorporate our loved one in a new way into our lives, but even just processing all of the changes it means to our lives is one that can take quite a while!  This is a hard concept for us to wrap our heads around, let alone adjust to!

https://www.lifeline.org.au/get-help/topics/loss-grief

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“ I'm glad he didn't suffer longer but it seems the suffering transfers to us, doesn't it.”

So, so true!!! 

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On 1/20/2019 at 1:48 PM, LaurieB58 said:

Thru all of the heartache, I have learned these things:  Life is a gift; it is not promised; it is not guaranteed. The pain of grief is caused by great love and if I had to do it all over again...I would. My life with him was worth it.  He influenced who I am today and I am a better me because of him. That is one of the greatest truths there is.  We are all heading toward death and because of this,

My husband and dad passed away a month ago (within 24 hrs of each other)   the words you wrote ring so true. I would not be the person I am without either of them.  I try to be grateful for the time I did have. My husband worked in the world trade center and had a schedule change on September 11th. So you see I had him a lot longer than I should have and I have a beautiful daughter who never would have been born - my older daughter was only months old on 9/11.  I try to focus on the time we did have and the many many memories we made rather than focus on the  plans we made for our future thatvwill never happen. 

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On 1/15/2019 at 6:07 PM, Pmarie said:

Having him in my life was so psychologically healthy for me  — even when I was off doing something alone — I never for one moment felt alone, as long as he was living. I guess I was very lucky to have what I did, some never do. How long we search for such special relationships in our life, which are so few. Only to have it vanish and disappear like a dream

So true and beautifully expressed. There was a contentment knowing we had each other that was always with me, even when apart. To have it vanish is uncomprehendable and so very hard to accept. Makes me question if there is a point to working to build a life and dream when it can be stolen in an instant. And looking back I was foolish to not appreciate every second more. It was so familiar I didnt see just how precious every moment together was. 

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Laurieb58 what beautiful,inspiring words!What each of you has expressed hits my heart.No we don't move on!We learn to relate and have a different relationship with the one we lost,but that takes time and different time for all of us,no one has a right to tell us how long or how to grieve.Pim,what a special and dear relationship you had and have with Rob that is yours forever.And for those of you with children and grandchildren,always remember they carry your loved ones DNA so a part of them is still living so love them well and in time you will see your loved one in them.
My love to all.may we find one minutes peace.
Billie

Sent from my LG-TP260 using Grieving.com mobile app

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1 hour ago, Fmf said:

My husband and dad passed away a month ago (within 24 hrs of each other)   the words you wrote ring so true. I would not be the person I am without either of them.  I try to be grateful for the time I did have. My husband worked in the world trade center and had a schedule change on September 11th. So you see I had him a lot longer than I should have and I have a beautiful daughter who never would have been born - my older daughter was only months old on 9/11.  I try to focus on the time we did have and the many many memories we made rather than focus on the  plans we made for our future thatvwill never happen. 

Fmf, 

Losing what is probably the two most important men in your lIfe a month apart must have been a lot to bear. Sorrow...multiplied. I am so sorry. 

I am sure your focus on the time you had with them brings back joy and love. And the daughter who was born as a result of your husband’s schedule change is a blessing as well. 

Thank you for sharing your grief story. Your loss is still fresh but it seems you have chosen to look at the joy of those relationships...and that is the beginning of healing. 

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@LaurieB58 they actually died less than 24 hours apart. -the 29th and 30th of January this year. I feel I need to focus on the joy they both brought to me. It certainly doesn’t mean I don’t miss the terribly every day but I know I can’t ball myself up into a corner. I love to speak about both of them to whoever will listen. Ultimately I believe that they had some unspoken bond as if they both knew they were going to die and therefore went together. My dad waiting for my husband. In life they were  very close and now so in death they are too. 

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On 3/4/2019 at 7:40 AM, ccoflove said:

So true and beautifully expressed. There was a contentment knowing we had each other that was always with me, even when apart. To have it vanish is uncomprehendable and so very hard to accept. Makes me question if there is a point to working to build a life and dream when it can be stolen in an instant. And looking back I was foolish to not appreciate every second more. It was so familiar I didnt see just how precious every moment together was. 

I have a close friend who lost her husband a few years after I lost mine.  One day she met another who she wanted to be with but was afraid to because she was afraid of going through loss all over again. I told her, You made your way through this once and will again if you have to, but don't let yourself be robbed of the joy of love because of FEAR of what may or may not happen.  Today she is happily married and enjoying life.  Will she suffer this loss again?  Will her husband?  I don't know.  I only know she would have been robbed of these years if she had not gone for it, and God gave her the grace to get through it once, He will again if need be...secretly I hope they can go together someday...a long ways off.

I have only learned the value of living in the present and appreciating what IS rather than merely lamenting what isn't.  That was an art I didn't learn until I lost my George.  Fortunately we DID love and appreciate each other to the fullest while he was still alive.  I just never dreamed I'd lose him so soon.  But I wouldn't change a thing, I would love him to the fullest all over again, even if it meant going through this loss.

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Thanks to you all for your ongoing contributions to this topic.

Your wisdom and kind words touch my soul.

I have not been very active on this forum lately but this is because I am SO TIRED. Grieving takes a lot of energy, doesn't it?

Love, Pim

 

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1 hour ago, Pim said:

Thanks to you all for your ongoing contributions to this topic.

Your wisdom and kind words touch my soul.

I have not been very active on this forum lately but this is because I am SO TIRED. Grieving takes a lot of energy, doesn't it?

Love, Pim

 

Pim,

It is rather interesting...I was rereading this topic this past week and I was thinking about you and how you were getting along. I almost posted to you to ask because I felt like somehow you needed it.....then this morning I read your post. 

Understand about feeling tired. Grieving absolutely drains you physically, as well as emotionally. 

I look forward to the arrival of spring. A renewal of life and the beauty of the outdoors once again. 

Hugs to you

Laurie 

 

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On 3/4/2019 at 2:56 PM, Fmf said:

@LaurieB58 they actually died less than 24 hours apart. -the 29th and 30th of January this year. I feel I need to focus on the joy they both brought to me. It certainly doesn’t mean I don’t miss the terribly every day but I know I can’t ball myself up into a corner. I love to speak about both of them to whoever will listen. Ultimately I believe that they had some unspoken bond as if they both knew they were going to die and therefore went together. My dad waiting for my husband. In life they were  very close and now so in death they are too. 

Fmf

...so sorry I missed in your first post that they had died less than 24 hours apart. 

I understand focusing on the joy that each brought to your life. For me, it has taken some time to speak about my husband without getting choked up...but it is happening more and more as I continue to navigate grief and grow thru it. 

Blessings and prayers for all who grieve 

 

 

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1 hour ago, Pim said:

I am SO TIRED. Grieving takes a lot of energy, doesn't it?

Yes it does.  It's exhausting.

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15 hours ago, LaurieB58 said:

It is rather interesting...I was rereading this topic this past week and I was thinking about you and how you were getting along. I almost posted to you to ask because I felt like somehow you needed it.....then this morning I read your post.

Thanks Laurie,

I appreciate it so much.

Everything is so dual... on the one hand I notice that some days are now better. On the other hand, this morning I was filling out my income tax forms (well, you have to do it sometime) and when I filled in the figure for the stem cell based treatment that Rob had in 2018, the cold harsh reality hit me full force. Because no matter how much money I will get back, how much money I will ever have, whatever I achieve in the rest of my life,

my poor darling Rob has died and it's just too much to bear.

It's so unfair and I miss him so much.
Tears in my eyes when I type these very words.

Big hugs, to you and all the wonderful people here on this forum.

Pim

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Income taxes are hard because we face things filling it out that are hard....

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Me, too! The fatigue I feel is almost disabling. I slept 11 hours last night and no matter how much sleep I get, I still wake up exhausted. Grief is indeed a mental strain.

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Yeah, I was awake at 1 am (or should I say 2 am as Daylight Savings Time just kicked in), couldn't go back to sleep, going to be a dragging day.  When George was here I'd just fall back into his arms and drift back to sleep...

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On 3/9/2019 at 12:18 AM, Pim said:

Because no matter how much money I will get back, how much money I will ever have, whatever I achieve in the rest of my life,

That is such a harsh truth for me too.  I would have given every penny we owned if I could have had my husband well again.  I would have lived in a darn tent for the rest of our lives if we could only have had the rest of our lives together.

 

On 3/8/2019 at 7:09 AM, Pim said:

I have not been very active on this forum lately but this is because I am SO TIRED. Grieving takes a lot of energy, doesn't it?

Yes, it sure does.  I go to bed with plans for the next day, but rarely get much of "the list" accomplished.  I'm so fatigued, on top of the fatigue from my medical conditions, that I sometimes feel like all I can do is sit and stare into space until I fade away.

What's worse is that I have such a hard time sleeping.  I have not been able to just "go to bed" in the bed we shared for 35 years, so I let myself fall asleep on the sofa when I can and then stagger up to bed in the middle of the night hoping to get a few more hours of uninterrupted sleep.  Not a particularly healthy sleep pattern, but it's all I've got at this point.

 

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Ah yes,I've always had insomnia but now it's as if sleep is a dream.Go to bed at 9,fall asleep at 11:30wake at 1 again at 2 and etc until 4:30 when I gratefully get out of bed more tired than I was.Grief is basically unhealthy,we don't sleep right or eat right and sporadic exercise if at all.Then our desire to withdraw.No wonder grievers have a higher mortality rate.

Sent from my LG-TP260 using Grieving.com mobile app

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When George died, the doctor offered me a sleeping pill because I was not sleeping.  I turned him down, figuring it was a temporary solution to a permanent situation.

I regret that.  I made it harder on myself than it had to be.  It was hard to function and work on little to no sleep.  Looking back I should have accepted his help.  What I didn't realize is that grief doesn't always stay in the same intensity that it is in the beginning and that little by little we begin to adjust and learn to cope, and eventually I could have weaned off the sleeping pills.  But alas now I find myself in older age that also carries with it sleeping problems...I get to sleep but wake up in the middle of the night and can't get back to sleep, my mind going, unable to shut off.  I may go to sleeping pills yet!  He'd wanted to prescribe Trazodone 50 mg, which is the low dose for sleeping, higher does is for anti-depressant.  He said it was safe and he takes it himself.

My sister bought me Luna for Christmas, I haven't tried it yet, it's expensive, but natural.  Melatonin doesn't do it for me.  Problem is, if I take it at 1-3 am when I realize I'm not getting back to sleep, then it'll make me sleepy when I need to be waking up!

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I too have the low energy, just tired, not so much head tired, but body fatigue.  I know Ive been eating more junk food (especially potato chips) since Kevin passed away. Who wants to cook for one?  I still take melatonin and tylenol at night but had to up melatonin to get it to help at all and I only take before bed. Still up  and down every couple hrs. also, my mind keeps going.  @KayC I was recently given the trazone 50mg at the vet for my male dog, 1 or 2 before stressful event for anxiety.  Mostly vet appts. or haircuts,  now my Hazel prob. needs also.  Kevin always took them to appts. or helped, its me alone now. Anyways it worked well for Harry the one time I used..we' ll see how haircuts go next week.  I am trying to eat healthier lately, and drinking more water instead of Mt.Dew ( my addiction) so we' ll see how thats goes too.  Thinking of all. Hugs

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17 hours ago, JES said:

@KayC  If you try the Luna, could you let us know how it works.  Thanks.

Will do.  The only reason I haven't yet is I don't have a hard time going to sleep, it's when I wake up in the early hours I have a hard time getting back to sleep.  I'm an early to bed early to rise person, so if I wake up at 1 instead of 4, I'm getting 3 hours too little sleep...but if I spend two hours trying to get to sleep and realize it's not happening, it's too late to take something because then I'll be sleepy all day!  My sister swears by Luna (can get on Amazon or eBay).

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