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Reply by NatR
15 Feb 2015, 5:40 PM
Dear Xenia,

I read your note and felt so strongly - I wished I could give you a hug.
 
You are sharing the journey after losing your beloved husband, partner, friend and so much the "other half" of you.

thank you for your vivid details, they will resonate with many others - going through a similar loss
your words help us all understand and learn to consider how to help and support others we know who have lost their spouse.

i hope you will give yourself time to grieve and re-learn how to "walk forward " again.
you are truly an inspiration and a friend on this forum.
we, (I) and I am sure others will continue to support and encourage you as often as you need it.
sending you love from across the miles,
sincerely,
NatR 💕
 
 
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Reply by oldbat
15 Feb 2015, 10:56 PM
Dear, dear Xenia,

I stand byt my earlier analogy of the mighty oak.  You truly are remarkable.  In the midst of all your pain and  grief you take time to empathize with everyone here. 

I think, no I know, that each of us on CVH is on a journey.  For each of us it is different, but the destination remains the same.   You have reached that destination, dear Xenia, but we are still travelling that long, lonely road.  The one that you walked for so long and so well.

I feel your pain.  The pain you described so well today.  The pain of John's absence.  I know that feeling of expectation.  That "oh, i guess he's still in the other room" sense.  It's been three years since Karl was so brutally snatched from our life.  His absence still haunts me.  Yes, I'm lucky in that he's still around and does come home once a week.  But it is not the same.  It can never be.  Like you, I am in mourning for what can never be again.

You write so expressively, Xenia.  that's a true gift and it is so rewarding to know that sharing your feelings here helps to alleviate some of your suffering.  At least for a while.

Please let us know how you are doing, and how you are feeling.  We care about you.

BIG virtual hugs from

oldbat

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Reply by Jimmie
16 Feb 2015, 1:01 AM
Such a time of absence and of grief.  Such a heavy weariness. 
The heart breaks in the disappearing.  Each day a lonely ritual of mourning and of loss. There is nothing to be done but to sit with you.   
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Reply by KathCull_admin
16 Feb 2015, 2:25 AM

And what great comfort is found in knowing that friends - whether virtual or next door - sit with us.  

As Colleen quoted in the thread Support Groups (online & off) - Your recommendations please "If someone told me that I would feel comforted and supported from a voice on a page, [from] someone I have never met, I would have been skeptical, but now I realise how it means so much to feel the caring spirit of the human voice as we have here in Virtual Hospice!” ~community member, CarolynMarie

Katherine 


 

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Reply by AdoptedSon
16 Feb 2015, 5:21 AM
Life is such an arduous journey, that we all seem to have embarked on. Often times it is filled with pain and sorrow, and there are the glimers of sun, the rays of light that keep us trudging forward. We make this journey, with loved ones, with dear partners, and yet as the journey goes, some seem to fall by the wayside, to never hold our hands, to help share the burden we carry on our shoulders, as we move along this journey we call Life.  It brings heartache, tears and anger, but it also brings resolve, it brings those brief rays of light, to cast their light on our troubled souls, as we keep putting one foot forward, one single step at a time.  It is life, a journey that never seems to end, and yet it does, or does it?

Is it an end or merely a change of path, along a new and less painful journey into the life ahead?

So much pain, as we journey along with loved ones no longer at our side, whether it be a Mother, Father, Brother, Sister, Husband or Wife, we miss them as we trudge forward, turning now and then to share a glimpse of a flower to the side, a light show up among the stars, forgetting in that brief moment of joy, that our partner, our mentor, our love, is not there, or are they?

Are they perhaps the ones showing us the light, when our hearts lay heavy with our sorrow, our lonliness?  

Maybe they are the ones who have directed the wind to blow gently across our cheeks, to dry the rolling flood of tears that spring up from deep within, I dont know, but then I don't know that it isn't them either.

I know the journey is longer now, that it appears more lonely, but the moments do come, when the journey seems almost like a casual walk in the woods, the light flickering through the heavy covering of leaves and tree limbs.  It is as it was when we started this journey, called Life, albeit one more shy walking besides us, than it was at first, when we started this adventure, this journey we call Life. 

And yet, with all that has passed, will pass, strangers have come our way, that have helped pierce the gloom of the dark, that have helped hold the sorrow, the grief and the fear, at bay, to help us overcome that mind numbing pain, that all encompassing fear, that deep emptiness we feel deep inside where our souls rest, that tries to hold our feet in place, to keep us from going onwards, in our lonely journey.  It doesn't take the place of those we have lost, along the way, but it does help us remember, that our journey is never truly, a lonely journey of just us, it is a journey we share, with so many others.

All that one sees, here, only helps bring back the good memories, helps keep one from losing heart totally, for the loss of one we cherished, one who was a part of us,it is nearly too much, but it is through everyone's strength here, that helps us keep our feet firmly on the ground, keeps them moving just that one more step forward in that journey we call Life.

I thank you all, for your courage, your strength, because it is from that simple act of caring, that lets us all, make it through to taking that next step forward, in our own journey. 

Hugs to you all
Ian 
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Reply by oldbat
16 Feb 2015, 2:43 PM
Oh Ian, what a wonderful tribute.  You have expressed so eloquently what so many of us here live every day.

You have certainly given me hope and faith at the beginning of yet another long, lonely day.  I willl move forward welcoming the shots of sunlight that dispel the gloom:  a phone call from a friend, a date to meet another, communication with my co-travellers on CVH.

Thank you.

oldbat

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Reply by frustrated
22 Feb 2015, 9:26 PM
Hi everyone,
All of you are such a support. I am desperate, so I am reaching out to all of you for help. My husband has who is in a cre center, has improved some. He has dementia along with a lot of other thins. His mind has clered enough that he is very articualte, but there isn't any reasoning there. He makes unrealistic demands and gets upset when I can't "fix" everything to his liking. He is convinced he can walk and that they are holding him captive and we are all conspiring to keep him there. He is confined to a wheelchair and it takes two people and a lift to move him.

It is totally draining to visit with him and I leave very depressed every day. My kids dread visiting. He is upset that I won't stay with him 24/7. His mind is functioning enough that he know where he is and know everyone. ANd he hates being there.

I was so depressed last week that for the first time in 3 years I took three days off and drove to visit my brother and his wife. So that really upset him that I loved them more than him. There is no way I or anyone can care on a conversation with him. If we try to divert his attention to something else , he yells and says to listen to him and that it is about him and nothing else.

I just don't know how to get through this right now and am hoping someone out there has some ideas that will help.

Thank you all for listening and all the support you give.
vj
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Reply by NatR
22 Feb 2015, 9:49 PM
Dear vj, frustrated 

i had to respond.... 
you are  doing exactly what you need to do...taking care of you.

let me explain what it's like to work in a nursing home with residents who have dementia

I recall walking into work, fresh and clean with my uniform, my name tag and my attitude  ready to take care of people and make them feel better.

walking to the nursing station to get report with my fellow PSWs ( personal support workers) I passed by a wheelchair with a sweet little lady who we treat to chocolate on night shift,  we spend time with her, talking and including her.

well many a time this little lady who was restrained in a tabletop chair for her own safety....she would spew many colourful words into the air, calling us all names, swearing and angry.
she could not  help it,  she did not "get it" that we were protecting her, that doctors orders were being followed, that her family knew and understood why all safety rules were in place....

i often got overwhelmed by the verbal abuse, despite being told while on course that all these comments were not directly aimed at me.
i worried that visitors would think we actually hurt our residents...and that hurt the most

its upsetting to have visitors in the nursing home see this kind of attack on staff.  I always wanted to explain to onlookers that we were doing the right thing, that the resident was not able to understand why she was restrained  

in in your case, vj, you are taking the comments personally because this is your loved one, this comes from a person you have always been able to count on - he was always there for you.

its so hard to stand back, stand firm, and not take it personally....but in time you will.  It's just what you have to do.

caregiving isn't easy.  Caregiving is not for the faint of heart.
i am convinced that is why many residents are abandoned in nursing homes - thur families can't bear to see their loved one reduced to a shell, or change to an angry person....it's so very painful.

i hope this helps you to be strong, to keep on making good decisions for yourself and your loved one....you are going to be assaulted for your stand...but anyone who walks in your shoes understands.

i still deal with tremendous guilt that I cannot be there 24/7 for my loved one....you are not alone.
i support you from my corner:)  
Take care of you....no one else will do it better:) 

best wishes,
NatR 
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Reply by oldbat
22 Feb 2015, 10:11 PM
Hi VJ,

So glad you posted!  I deeply wish  I had some solution, however small, to your enormous problem.  It takes great courage to endure what you are going through.  I know a little bit about it.  Although Karl does not have dementia, he has moments when he turns into a six-year-old having tantrums.  Sometimes I don't even know what has set him off and, as he loses all rational speech at those times, he can't tell me.  The best I can do is hug him tight, if he'll let me, give him lots of kisses and tell him often how much I love him.  Chocolate bars don't work any more - sadly!

My sense of what you're facing now is your husband's fear of abondonment.  A fear that can amount to terror.  I went through that with Karl and can only say "hang in there", it does get better.  Once he is reassured that you will always be there for him, his fear should be somewhat allayed.  Because he is unable to reason you may have to repeat your promise to never leave him many, many times, but in my experience this does work.  He will continue to be disappointed about any time you take off for some respite - essential by the way - and I'm so glad you've made a start on that - but he will recover.  Today I had to cancel Karl's trip home because of the ***!!!! weather here.  He cried when I told him but, after a nap seemed to accept it.  I hope I don't have to do the same tomorrow.  We have a long trip scheduled to a new opthamologist for him and more ***! (again!) snow is forecast.

Keep on being good to you, VJ.   It doesn't have to be major.  Curl up with a good book, watch some escapist TV, listen to music you love, have some hot chocolate (one of my favourite "escapes"!) or a drink and enjoy your "you" time.  It will help you feel more relaxed when you do visit him.  He will sense your serenity and, hopefully, be able to relax a little himself.

BIG cyber hugs to you and all our friends on CVH.

oldbat
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Reply by oldbat
22 Feb 2015, 10:16 PM
This is a shout-out to Jimmie:  Jimmie I wanted you to know that I and, I'm sure, all your friends here miss you very much.  We share your sorrow and grief for the huge losses you and your family are enduring. 

We think about you a lot and want you to know that our thoughts and prayers are always with you.

May angels keep you company on your sorrowful journey and lighten your load.

Many hugs from me and all of us,

Oldbat
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