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Reply by Xenia
07 Nov 2015, 5:06 PM

Good Morning Old Bat, Jimmie and All:

The fight we go through each day is so different for all of us.  OldBat your circumstances are overbearing and seems as if the fight will never end.  I can only say you are on brave woman who has been fighting the fight alone without support from those who should be holding out their hand and support you through this whole ordeal. The depression I can understand having been through it with John but not to the extent you are going through.

Your needs are so great and the help you require for Karl are overwhelming to you and I am sure you have been in touch with his counsellors, doctors, etc.  I wish I could offer you some kind of respite and direction to turn to but can only say I feel all you are going through, I understand the anger, the need to vent, the isolation and the absolute lonelines dealing with your illness and caring for your loved one, Karl.

I continue to think of you and all on this web site, knowing that all of us are going through tremoundous changes in our lives, daily and often we feel like we are adrift in a small boat on the largest ocean and no one hears our cries for help and find there is no one who can or is willing to reach ot their hand in support.  I keep you in my prayers and thoughts daily trusting there is someone who will be there for you soon.

Jimmie, the pain of losing John is what one calls "bittersweet".  I miss him but the memories that come up are a reminder of what we shared together, the good times, the laughs, the quiet times, the misunderstandings, working together to achieve the same goals of a home, having the children and watchng them grow up into adults together and being proud of them and being happy and proud we were able to spend 59 years together keeps me going daily. 

Yes, there are days when it is hard to get through the length of a day but some inner strength rears up and I get through and know the thoughts are with me all the time, the pain and the tears will get less but as I speak to the ladies who share dinners and lunches with me, time may heal but the memories are always there and as one said to me. "I miss him so much...even 10 years later" so the loss never goes away if one has shared a deep love for their husband or wife and life goes on with a bit of a hollow in our lives.

All for now, it is pouring rain and I am going out regardless, need a Tilley hat and gum boots and a boat....winter has come to the wet coast with a vengeance so off I go to face the elements and find a few more books to read...there are plenty in the library on my floor but I feel like going to the books store and see what they can offer.

Take care.

Fond regards and hugs

Xenia


 
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Reply by Xenia
10 Nov 2015, 11:58 PM

Greetings All:

Old Bat you have been on my mind for so many days since you last contacted us on Who Advocates for Me.  I put my thinking cap on trying to think where you can get help, where you can find relief from all your needs.  But to no avail as I live in British Columbia and you are in Ontario, it may as well be another country as Health services are so different in each province and one thing I know even though we call it Universal Health Care, there is no plan that is Universal for all Canadians and one should not have to spend hours, days or months searching for medical help especially in a time of need as you are now.

I share your anger, your pain and all that you are going through and feel somewhat frustracted that I can offer nothing except my caring for you.  I recall going through some of the things you are going through with Kar during the time John was under palliative care.  The support I received from John's doctor was what helped me through the trying times.

Today is10 months since John died and I find myself hurting very much..It will be one year in January and my sister spoke to me to-day telling me how brave I am and seeming to be able to carry on with all I have been through these past months.  If she only knew the pain I have learned to  hide, I read somewhere that losing someone and grief becomes part of our DNA, it is there and becomes part of us.

Reading has been comforting to me and to-day I have finished reading another book and as I finished the last few pages tears kept pouring out and the words became clouded and almost impossible to read.  Kleenex is strewn around my chair, tear drops are on the pages and I am weeping more to-day then I did the day John died, why, have I been holding back the tears and now a torrent is being released.  I believe it is a relief for me when I feel the pain of the person I am reading about, a person who could be makebelieve but the author has presented her pain and bravery in such a manner I can feel the pain of this person and I am sure the author was writing about the pain of life, losing a loved one and sharing this with her readers.

Jimmie, thank you for your words of understanding.  Across Canada we offer our words of comfort and as such we are comforted ourselves in sharing.

Katherine, how are you doing?  You have been such a help to all of us on CVH caring for us and I trust we are able to be of help to you through your time of grieving and missing your husband.  

Time is moving on this afternoon, dinner notice will be pealing through speaker reminding us that dinner is now being held.  From 4:00 pm to 6:00 pm.  How strange to hear someone telling us what is happening in our home, exercise at 9:30 a.m., lunch at 11:00 a.m. to 1:00 p.m., all the activities, etc.  Independent livng is somewhat different from living at home but I am adjusting...choosing what I want to do, what time I want to dine, what I want to do with my day, going out with my children or just staying in and reading and doing what I care to do.  I find the days can go quickly and I am quite happy here, mind, I do at times have a voice asking me:  Did you do the right thing by moving and I put that away knowing that I would have had to move from my condo soon and I was fortunate to have the kids help me with my decision and the move.

Thank you one and all for your support and understanding.  Hugs to all.
 
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Reply by Jimmie
11 Nov 2015, 1:07 PM

Dear Xenia and Old Bat:

Our grandaughter was hospitalized again and I have just returned from spending  ten days up there helping out at best I could.  The strain on my daughter and her husband is heart breaking to witness.  I return from such trips exhausted physically and emotionally.

I woke this morning to a dull grey Remembrance Day.  I will spend the day with Sarah in the nursing home and then head for Halifax to pick up our oldest, who has been away as well, and bring her back home.

I share your frustration Xenia at not being able to offer any pragmatic help to you, Old Bat.  I am entagled myself in the typical bureaucratic red tape which accompanies the transitions we are moving through.  But, my issues do not compare with yours, Old Bat, in terms of their stress and consequence.  You sound exhausted and  enraged - and understandably so. During  my various cancer treatments, I had the benefit of a "cancer patient navigator"  a professional health care expert who helped me navigate my way through not just the practical aspects of my treatments and care, but helped me as well through the emtional issues which arose.  She took my side and made things happen  when I didn't have the emotional or physical energies to get ot of bed let alone find a way through the exasperating and seemingly indifferent maze of the health care system.  Perhaps there should be similar professional care givers serving as advocates for those who find themselves in situations like your own, Old Bat.  I know there are social workers often assigned to such work, but sometimes you need someone to help you deal with THEM too. At times it seems like it is all papers, and forms, and plans which don't pan out.  You need a dedicated ally with energy, and savvy, and fire in their belly. 

While I am preaching, let me state the obvious.  I believe one of the more debilitating challenges of people in circumstances such as ours is loneliness.  Xenia, you have lost your husband - an interesting phrase when you consider it - "lost your husband".  I suspect it feels like that at times - as if you just turned around and somehow, inexplicably, "lost" him as you might lose a child in a crowd, as if in that susepended, surreal state, you might turn around once more and somehow find him there again, familiar, in his favourite chair.  There are so many clues to his continued presence, how is it he could be "lost".  Life becomes a kind of twilight zone, a iving in two worlds - the waking one of practical needs and issues and the dreamlike one where we still and perhaps alwasy will find ourselves, in poignant, solitary moments looking for the ones we have "lost" -.

Old Bat, you and I are alone in a different way - we are in a state of "losing", of meeting each morning a person who is disappearing from us and though we "know better", we, or at least I, find myself still expecting, or hoping, or wishing, or insisting, they be the way they once were.  And I  am constantly, irrationally disappointed frustrated, broken, emptied  when they are not.  WE are constantly adjusting or trying to adjust to the stranger who is replacing the person we once knew, we once had as a companion.  Each day is a day of mourning for what was lost overnight and a day of struggle to sustain a nourishing relations while the sands relentlessly shift under our feet.

It is a lonely enterprise.  This business.  And lonelier yet when friends grow weary of our weariness or are caught in the tenacious and isolating grip of their own traumas.

If I have a Christmas wish for you, it would be that you be blessed with companions - nurturing, warm, worldly, well worn  companons - companions who understand without explanations,  companions willing to band together with you to bar, as best they can, the cold and darkness of the winter.  Such ones are hard to find and to keep.  Nevertheless, they are the gift of life and joy and the promise of a spring of one kind or another.  May you be blessed with such comforts and such friends, my dears.

Jim    
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Reply by Xenia
11 Nov 2015, 6:39 PM

Dear Jimmie and all on CVH:

I had to respond to Jimmie's insight on "losing" a husband, loved one, wife, etc. as this morning I once again shared the grief of a wife who was losing her husband day by day.

I had gone to the laundry room this morning and there was Lillian, again, washing her husband's clothes and she was upset and angry.  We spoke and she told me how tired she is of caring for her beloved husband of 63 years marrige, he is 90 and she is worn out.  Once again she states her anger is not at him but at what he has become and he is slowly losing more of his facilties and she is caring for him, she is tired not of caring for him as such but she is literally tired.  She helps him dress, helps him into the dining room, he is going blind and she says she is slowly losing it.  She is tired of him waking up at 5:00 a.m. and wandering and she is unable to give up.  Her love keeps her going for another day and so she soldiers on.

What is the "it" we are losing?  Is it all the changes we are or were seeing in our loved ones?  Where has this person gone or is going? Are we losing our compassion caring for our loved ones or are we losing the partner we knew and our loss comes out as anger?  Why do we blame ourselves and think we are selfish when we speak of how tired we are, how lonely we are, how neglected we are by friends, family and the health services we need?

I sat here thinking and wondering and thinking I am being selfish when I think, is it for the best that John died before he could no longer be the person I knew before he became so ill.  Was I better off having to grieve for him while he still had his facilties and I was able to care for him and converse with him?  Did he will himself to let go as he often said he did not want me to have to care for him when he became too ill, even though the last week of his life when we had planned to place him in care and he said to myself and my daughter "please take me home and let me try again and I will be better and if not then I will go to a home care".  

These words haunt me at times and I wonder, should I have taken John home?  Yet in my heart I knew as the doctor had told me, "you can no longer care for John and it is dangerous for you".   There will never be a good answer to this question as I ponder so many "if's and should or could" I have done this or that.  All I know is that I was there for John loving him no matter what was right or wrong.  I did what I could and have the memory of him saying goodbye to me when he still could speak and knew me and his onset dementia had not taken that from me and my children. 

I share this with you as so many of us have doubts, anger, sorrow and regrets which really should not be felt as we have tried our best and did our best in caring for our loved ones.  Just putting this down on paper, or whatever, I can feel and see that, yes, we all do the best we can and not blame ourselves for the anger or shortness and know we did the caring in love for the person who we knew and are caring for the person we really do not know but love keeps us caring as we cannot give up and turn away.

As you said Jimmie, losing a loved one ....one finds memories that keep us grounded and we do find that lost husband, wife, child, or other and the loss is bearable.

Hugs to all.

Xenia 
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Reply by NatR
11 Nov 2015, 7:38 PM

Hello Xenia

i have seen your notes go by and I apprecare them - as I appreciate all the innermost  thoughts our members share

my instinct is to tell you - don't feel guilty at the way everything's played out for john and you
i believe IT all happened in the best way - and that you should not feel guilt or worry any about the "what ifs"

it it was done for john and you / in his best interest and yours
feel at peace about how things happened / I believe you did your very best for as long as you possibly could - and in the end it was too much, no longer safe for either of you - and it's all over.
johN had a remarkable wife, partner and friend-
he would have done the same for you

 sending  you hugs and encouragement  
NatR👍💕 
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Reply by KathCull_admin
11 Nov 2015, 9:46 PM

Hello everyone,
Well the sun came out briefly but now overcast - as I always think it should be on November 11. My mother always called it Armistice Day. We just came back from some rather delicious Vietnamese food - with Vietnamese coffee - one of my favourites!

Thank you for your warm thoughts Xenia. This thread and others (by that I mean the members posts) have been such a support for me. 

These conversations (although I admit I have not been an active participant) are so welcome for me. I have been missing talking with Henry. We talked about anything and everything. He loved a good debate and playing the devil's advocate. I miss that.  I know I am not alone in my missing as all of us on this thread and in this community have experienced loss and loneliness.  That is such great comfort for me. I am not alone. 

Your idea about a 'navigator' Jimmie is a great one - someone to navigate and help when you just don't have the wherewithall to do it - nor the 'insiders' knowledge to tap the resources needed. It is so tiring and frustrating trying to find help and answers. Oldbat have you tried Ask A Professional?  They might be able to suggest something - or direct you to someone you have not met.

Thinking of you all with great affection.
Katherine 
 


 
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Reply by oldbat
11 Nov 2015, 9:55 PM

Dear Xenia,

The last, the very last thing anyone oould accuse you of is selfishness.  You cared for John with heartfelt love and tenderness, right up to and beyond his end.  You were the reason he kept going.  Just as you are the reason so many of us keep coming back to CVH.  Oh, there are other wonderful people here, too.  Many, many.  But you are a shining star.  You are a-brim with love and caringness.  Those are burned into the very fibre of your body and soul.  Your responses to everything you've had to endure, and are still enduring, are beacons of light and truth to us all.  

And Jimmie, ah Jimmie.  I think of you so often.  I feel for you so much.  The pain and loneliness and exhaustion you are experiencing, and have experienced for so long, are truly devastating.  And yet you find the time and the heart to share your wonder words with us.  Words, I have to tell you, that have kept me going on many occasions.  Not just for their loving kindness, but for the sheer beauty of the way you work them.  Magic, Jimmie, magic.

And to everyone here, take heart from this wonderful company we share.  Take joy in the tiniest pleasure.  It is true that some of them sometimes feel so tiny they're almost overlooked.  But they're there.   And they can make a world of difference.

Thoughts. Love.  Hugs.  And prayers.

oldbat


 
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Reply by Nouce
11 Nov 2015, 10:06 PM

Greetings to all,


I've been out of touch but I'm so glad to hear from you all. Jim, you are a prophet. The business of working full time and making space for ongoing care for Pablo in the nursing home environment has been exhausting. I am so grateful for your words and reminders. Yesterday he fell, and after getting hiim settled, I went home because I was so tired. Selfish? or self care? Today he's a bit sharper. We went out for a walk on a warmish late fall day, me pushing the wheelchair. Most of the leaves are down, but the buckeyes are still a brilliant deep red.


So I drink in that beauty, remember your wise words and honest sharing (thanks, Oldbat!).


Love and prayers to all,


Nouce
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Reply by Xenia
20 Nov 2015, 6:37 PM

Good Morning From the Cold and Snowy West:

Rereading all the messages for the past week has made me so much more greatful for the words of wisdom so many of you have passed on to all on CFH.  

Nounce, I understandhow tired you must be having to work and then caring for Pablo.  You have and are a very brave woman and Pablo is fortunate to have you caring for him.  The walk outside must have been very exciting for you both.  Fall is such a great time of year, the trees changing colours, etc.  I wish you both peace and tranquility during this very hard time dealing with the pain and all that is part of caring for a loved one.

Jimmie:  Once again you have written the most comforting words that help me and others understand the meaning of losing a loved one.  So often we hear the words, "we share your loss".  Your explanation hit the nail on the head.  Thank You.

Old Bat and Nat:  I understand you both are busy ladies and appreciate any message you send.  I do miss your messages and am so greatful when I receive notice of a message from both of you.  Thanks so much.

To-day would have been John's 87th birthday.  The first birthday I will not have him here for the party with the family.  We are going out for dinner, the family and have this time to remember John and celebrate his life as time has moved on so quickly and soon it will be a year...12 months since John died.  

On a lighter note, last night, at my residence one of the ladies at my table celebrated her 95th birthday.  I am the youngest at the table,  the other 2 ladies are 93 and 94 respectively.  I had gone to the $1.00 store a few weeks ago and purchased some party hats and napkins, my daughter sent a small bouquet of posie flowers and another daughter had a small cake made and we had the best party in the place.  One of the ladies - the 93 year, called for wine for all and we had a ball.

 Blanche, whose birthday we celebrated was so happy and delighted as was her daughter who had come from the island (Victoria, etc) to help mom celebrate her 95th.  We sat around laughing and talking till after 6:00 p.m and had to leave the table as the staff needed to clear up and reset the tables.  We all slowly left the dining room to return to our suites with words of "we have to do this again"".  Yes, we will and as we were leaving the dining room many of the residents came up to us letting us know they had enjoyed watching our table and seeing the party hats on our greying heads, the laughter and partying.  Seems, this does not take place very often.  Perhaps, it is that I do things spontanously as one of the residents had approached me at lunch and asked "What are you up to", why I asked...I saw the flowers your son was bringing to you.  I had to explain to her what I had planned and the flowers were for Blanche.  All in all it was a great day. Having this party helped lift my spirits and was helpful in facing today knowing John would have had similar birthday party at home with all the family however, now we celebrate his birthday with him in spirit and memories of past birthdays.

Getting on to time to get ready for lunch so I will sign off, hugs to all and keepmessaging.

Xenia 
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Reply by Jimmie
22 Nov 2015, 12:50 PM

Xenia and all:

The ether monster just gobbled up an earlier version of my response to your post and mockingly disappeared out of sight forever. Gone.  I wil try again.

I wanted to write to you to celebrate and champion the birthday party you inspired.  I have spent everyday for the past nine months in the local nursing home helping to care for my wife, Sarah.  To the causal observer the home can appear to be a place of sadness, loneliness, despondent resignation - and often that would not be far off the mark in terms of my own experience.  However, familiarity has a way of educating your vision allowng you to also witness genuine moments of joy, tenderness, life.  Leonard Cohen writes:

Ring the bells that still can ring
Forget your perfect offering
There s a crack, a crack in everything
That's how the light gets in      

There is a crack in everything - that's how the light gets in - a crack in the mantle of grief, of mourning, of weariness - and the light gets in however momentarily. Party hats - a call for wine - singing.  Spirits rise.  The room grows brighter. Hearts lighten.  Gifts are given.  RIvers however humbly run anew - water, the source of life - we feel refreshed for just a moment perhaps - but such moments should not be denigrated because of their brevity.  They should be accepted as gifts - life's tenderness, life's balm, life's care.  We need tablemates; we need to be tablemates - however imperfect, broken we may be - "that's how the light gets in..."   


AS I read your account of the birthday celebration I was reminded of a poem I used to use in class.  It's called Warning by Jenny Joseph.  There is a society in town for women of a certain age. It's called the "Red Hat Society".  I suspect it exists everywhere in Canada.  The title of that society is taken from a line in Joseph's poem.  Here's the poem:

Warnng - Jenny Joseph

When I am an old woman I shall wear purple
With a red hat which doesn't go, and doesn't suit me.
And I shall spend my pension on brandy and summer gloves
And satin sandals, and say we've no money for butter.
I shall sit down on the pavement when I'm tired
And gobble up samples in shops and press alarm bells
And run my stick along the public railings
And make up for the sobriety of my youth.
I shall go out in my slippers in the rain
And pick flowers in other people's gardens
And learn to spit.

You can wear terrible shirts and grow more fat
And eat three pounds of sausages at a go
Or only bread and pickle for a week
And hoard pens and pencils and beermats and things in boxes.

But now we must have clothes that keep us dry
And pay our rent and not swear in the street
And set a good example for the children.
We must have friends to dinner and read the papers.

But maybe I ought to practice a little now?
So people who know me are not too shocked and surprised
When suddenly I am old, and start to wear purple.



I love the lines about learning how to spit and making up for the sobriety of youth....running the stick along the public railings...pressing alarm bells.   Spirits rising... fragile cracks where the light, energy, life gets in...

Not easy, not easy, not easy.  I know, I know,I know.  How could it be otherwise.  The world breaks your heart.  Not easy.  I sometimes, out of deep spite and anger, find myself REFUSING to let the light come in. REFUSING. I will not have it!!!! That resistance and rage remains a part of my life.  STill, the cracks appear - in the letters posted on this site - in the infrequent but suddenly real smiles of Sarah, in the waters of the bay, in the unanticipated kindness of strangers, in the comfort of trees and the consolation of friends...It is not all lost, not all lost... we live with loss... it becomes a living part of who we are and swallows us at times ...but... the cracks remain. the cracks remain and from tme to time...the light gets in.

Thank you Xenia for your spontaneous foolishness and for bringing that light to your tablemates - near and far.

Jim   

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