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Reply by Xenia
12 Jun 2015, 4:33 PM

Good Morning All:

The day has begun from the East to the West, early this a.m. 12:00 the wind was rattling the venetians and I got up, shut the window, went to bed about 1:00 a.m. then again the wind was howling and up I get..2:00 a.m. hit the sofa/chesterield and spend the remainder of the night there.  The wind is still howling, what a change from a day or so ago when the temperature ranged from 25 to 30 in the province. Looking forward to a cooler few days and get some well needed rest.

Jimmie, my heart goes out to you with regard to friends whom you feel have abondoned you.  This has been a theme our family has gone through with John being predicted to pass at any time, then recovery and on to passing that friends  who were supportive the first year or two were great then when it finally came to the palliative side we saw and felt the retreat of our friends.  My daughter, who works in an office downtown Vancouver, had a very hard time as a few or her work mates bluntly told her that they didn't believe her dad was dying.  She never spoke again about Dad and if asked would just reply.  Thanks for asking, he is doing fine.  

As I have written before I do believe that everyone is afraid for their own feelings on dementia, illness or dying and they waltz around it by being very supportive then backing off as they feel uncomfortable knowing that one of their friends is in this position and as the saying goes: But for God - go I" and they retreat into their comfort zone and give out the perfunturary salutations of "how are you doing..yes I know, but they had a good life, etc." and then go onto small talk as they cannot face the reality of their friend in a dire situation and retreat into the safety of their sheltered lives until the day that they face the same situation and problems you and I and those on CVH are facing or have faced.

I feel your anger and this is not you.  I recall and reread many of your messages and they are uplifting, full of support and understanding of all of us who have messaged with you and others.  Talking or is it speaking with others who have faced the same dilema and a counsellor at Hospice we are told it is okay to feel anger and as one Churchgoing, understanding gentleman told me a number of years ago.  It is alright to feel righteous anger.  It is okay to be angry about a situation and express it rather than have it boil inside and change our personality by having the anger fester until we literally explode.

I appreciate the words I have written may not be a comfort to you and that we all deal with anger in our own way, however, I just could not sit back and not respond to your dilema and support you in your time of need.  I am sure all who are on this message board have been through the same situaitons as you and I (or is it Me) and have felt the anger and need to express it.

The wind is blowing very hard now so I have to get off the computer and adjust the windows and blinds.  Wonder if we are going to have some big rain storm.

I send you hugs and understanding of the pain you are now feeling.  Please keep in touch and let out your anger so we can support you in our own little way.

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Reply by frustrated
12 Jun 2015, 5:30 PM

Hi Jimmie,

I to felt I must respond. I totally agree with Xenia. At first my friends were very supportive, but as mu husband's illness as gone on and on, they have fallen by the wayside.


My husband never wnated visitors as he didn't want anyone to see how his mind had deteriorated, he was embarrassed that he was ill, and never really acceptd that he wouldn't get better.

Our family to has gone through the almost dying to recovery and on andon so many times Ihave lost count.

So you aren't alone at all. But those of us here do understand and it is ok to be angry and rant and all of that. It is normal. You wouldn't be normal if you weren't angry with all that has happened to you. So vent and rant, I sure have.

Take care and know that we all are here for you.


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Reply by Nouce
12 Jun 2015, 6:58 PM

Greetings to you all! I haven't been in the chat because of all the Canadian policy matters you are discussing. But I hear the rant! I feel the rant. Pablo is see-sawing between some functionality and almost none. I'm (trying to) pick him off the floor when he doesn't make it.

We still have friends visiting, he rises to the occasion, and then they say to me: "He's right as rain." Come over this evening, I want to say. And how to decide? I know I can't care for him anymore, and am spending a lot of money on folks coming into our home, hwere he wants to stay. Would nursing care "complete living care," they call it, be better? All self pay? How long can that last.

And it goes on and on...

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Reply by oldbat
12 Jun 2015, 7:08 PM

Hello dear Jimmie,

I want to add my voice to Xenia's and Vj's.   This is one of the hardest things to acknowledge and accept for those in our situations.  We long for, care for and deeply love those we are tending.  But it is cruelly hard to accept that we will probably never receive the same in return.  Some of you have families, who may not be cherishing you.  Others have friends, people we actually chose to accompany us on our journey.  And, so it seems, one by one they vanish, melt into the backgrounds of their own lives. 

Karl and I always enjoyed a wide circle of friends.  As we got older, we tended to actually do a little less with everyone, but they were still an important part of our lives.  And we thought we were in theirs.  Not so.  As you so poignantly noted, afte the initial rush to call, e-mail, empathize, sympathize, erosion set in.  I can count three, possibly four, friends who have been there for me throughout.  For Karl, it's even worse.  there is one couple who see him relatively frequently; another man who met him through one of his earlier room-mates, a wonderful university professor who sadly died last year.  So his friend has, in a manner of speaking, been deeded to us.  Then there is the man with whom we did the video, and I wrote the book, to be printed later this year.  He has literally adopted us.  He's also given us our "legacy":  the video has been seen around the world, dubbed in many languages, as will the book.

As for Karl's daughters.  I believe I've expressed my feelings on that issue, quite vehemently at times!  One of them is going to be majorly pissed off when she sees there are only passing references to her and her sister in the book.  She's already told me off because there were no "family! photos" in the video.

You are so right to give voice to your justified anger and hurt.  Hopefully doing so gave you a little, much needed, relief.  Please come here to do just that, when you need to.  You have a safe and understanding audience.

Give yourself a big virtual HUG from me, Jimmie.



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Reply by AdoptedSon
12 Jun 2015, 8:05 PM

Dear Jimmie and All

Here I thought it was something I did, the way Mom's so called friends simply vanished, without a trace. Over her last remaining years, no one she counted as a friend bothered to call, to show up for a cup of tea, even when I offerred to pick them up, to take them home.

It is like we suddenly became Lepers, and were unclean to be around.  Even in her passing, no one showed up, not a single soul she knew bothered to take the time out of their routine, to pay their last respects.

Over the year, I looked back, wondered what I did, that alienated them, that made them refuse to drop on by.  Even the Rabbie who administered the service, had to 'dash off' after the service.

Thing is, it wasn't our fault, but for the longest time I believed it was. I suppose we simply don't want to be reminded, that eventually we too, shall be in that person's position, of dwindling time left.

I never truly gasped the phrase, out of sight, out of mind, until I stared out the few souls who showed up to say goodbye to Mom.  Life truly sucks at times, and to see how so many, simply have forgotten what they were taught, were raised to believe in, like having compassion, like simply doing what is right, is a bitter pill to swallow, but it is life, sadly.

Though I think, there might be the odd glimmer of hope, least here in this forum, it seems so. I wish more could see this, to listen to the pleas, to the need for just a friendly smile. I wish things would be different too, but that requires work, requires actually going out of our comfort zone, I suppose.  

It is hopeful, to see so many who have gone through all this, and who still keep on going forward. Maybe in our lifetime, we will see things change, will see people return to their roots, and at least one thing about being here, is there is Hope, for tomorrow.

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Reply by Xenia
14 Jun 2015, 11:39 PM

Hi All:

Feeling sad and worried and somewhat surprised at what has happened to-day.  I thought all the feelings of John's passing was over with the family, that is until this morning while speaking to our youngest daughter.

Her dear friend died a very horrific death last nite, lung cancer, and she had been to visit her with her friends sister from Toronto.  There was a lot of family problems and the mother was angry, etc. etc.  Gayle, our daughter was with her until late in the evening then went home as Debbies (friend) brother came from Kitimat to be with her.  She was very ill and thin and Gayle was very upset.

This morning she called and said Debbie died at 2:00 a.m. and she was palliative and dad (John) was not palliative as she stated, I saw what palliative means.  I was robbed of having dad given morphone and he didn;t need it, we should have put him in a care home and they would have put him in a wheel chair, taken him out of bed, taken him to the activity room.  Look what they did for Stephen(my brother who lived with her and I wrote about this a while back) he is doing well and they thought he was palliative.

She went on about John's doctor and he was responsible for her not having dad around for another year or the year he was so ill.  I tried to tell her dad didn;t want to go to a home and we all knew his wishes, even though he may not have had the care he would get in a care home.  I know he would be looked after, however, I also know, having worked in one years ago, many sit in their wheel chairs, vacant stares in their eyes, etc . etc.  Somehow, I know she is striking out at all as she has always been the strong one and I do believe and have known that all her bravery is bravado and she keeps it in and as to-day she mentioned : I know you cared for dad but he would have been better of being cared in a rest home."  

I swalloed my feelings, let her vent and we agreed not to speak of this anymore and I know she is worn out from all she has tried to do and she often takes on more than she should and perhaps feel she is not appreciated enough even though she never says anything.   I feel sad and know she is angry, she is sad at the loss of her friend, she is wiped out and has had to vent her feelings and as such I let her go and know she didn't mean to hurt me.

Good thing she is going to Pender Island in a week and she can get some rest as she has a weeks' holiday and she will have time to recuperate as she has been under a lot of strain.

Thanks for listening.  I need to vent and get this off my chest knowing her love for her dad was so strong her feelings of anger are directed at John's doctor and why I didn;t put dad in care so he would have been there for her another year.

Hugs to all.

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Reply by oldbat
14 Jun 2015, 11:58 PM

Oh Xenia, what a lot you've had to bear.  And now this, with your daughter.  As usual, your wisdom got you through.  She is obviously totally exhausted, as you say, and whoever she spoke to at that particular point in time, was going to "get it'.  

I'm sure that, when she is less tired, perhaps after her holiday, she will be able to put everything into proper perspective.  Her friend dying so soon after she'd lost her Dad must have been totally traumatic.

You know, rightly, that you did EVERYTHING humanly possible for John.  You listened to him, heard and acted on his wishes, always with the greatest love and concern.  Turn some of that on yourself now, dear Xenia.  Rest in the knowledge that you gave your very best.  Your daughter will realize that again, once she herself is rested. 

My prescription for you:  a little wine, good music, escapist t.v. or a really interesting book, then a long, peaceful night of sleep.

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Reply by NatR
15 Jun 2015, 12:09 AM

Dear Xenia,

i agree with oldbat
a lot of feelings surfacing - guilt, regret, grief.  So difficult😞

each situation is different and your daughter has had a lot to deal with
as a member of this forum listening to your notes and your daily journey with John - I commend you for your dedication love and care

hugs and no regrets 
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Reply by AdoptedSon
15 Jun 2015, 12:17 AM

Oldbat forgot to add   "And copious amounts of chocolate"

It is always hard when someone close lashes out, but that is all they doing, as you noted. You sure have had your hands full, so extra chocolate, nice day at a spa or something special, just for you. You DO deserve it, as do so many of you.

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Reply by oldbat
15 Jun 2015, 12:30 AM

OMG Ian, how could I have forgotten chocolate.  What goes better with wine, music and a good book? 

Definitely heading into dotage!  Karl and I had Black Forest torte today.  Maybe I'm just chocolated out?  Nah!

Copious apologies all 'round,

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