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Réponse de frustrated
15 avr. 2015, 11 h 28

Oh Jimmie,


How I wish I could reach out and hug you. You do understand as some of my firneds who I have shared with don't. One of my firends even found his accusations amusing. They are not amusing. I certianly will not share with that friend again. Until you have experienced it you can;t understand how totally exhausting it is.


Our children have limited their visits because they can't handle the abuse. It is hard to walk away, and I do feel guilty, and it is hard not to take the abuse personnally. I am trying.


It has been easier, because the Dr has finally put him on medications that leave him subdued. He has slept a lot the last few days. He doesn't communicate much, but it isn't abusive when he does. It makes it easier to spend time with him.


I don't know about recovering, but I try to. I just feel as you said battered. My emotions are numb.


I think what I need is 6 weeks on a beach in the sun having someone wait on me and lots of chooclates.


Thank you Jimmie for caring.


vj 
 
Réponse de Xenia
19 avr. 2015, 17 h 50

Good Morning All:

Sunday morning and all is still and quiet in our condo.  The koi pond is being visited by the gulls, the ducks and Canada Geese.  Green grass all around trimmed and trees in leaf, daffodils, etc in bloom.  It is spring in B.C., west coast at least.  Sun Run topday, that is Vancouver's Boston Marathon.  41,000 people running and walking.

All is well with the world when you look at it this way.  Myself I am beginning to think that Jimmies words, Leave,recover and return can be used for grieving as well.  I left behind some items that kept me in tears whenever I looked at them. too much of a reminder of John, recovered and returned.  Yes, the pain was there but liveable.  

There is a lot of excitement in our family as we prepare for the only grandson, son and nephew[s marriage.  I go along with the planning and keep up with the turmoil and good news that this has been found, this has been approved, the venu has been scheduled and a new family begins.  Oh how, John would have liked to have been part of this but he will be there in spirit so our grandson tells me.

Jimmie, Neil Diamond is coming to Vancouver and I sure would have loved to see him but it is a busy time and I cannot keep asking the family to take me all over.  While I was listening to some of his songs I thought of your Sarah.  "I Am I cried".  what a song and I can see why she loved it.  Another song I have played lately is "Sound of Silence"  not with the words but by James Last on You Tube.  What a piece of music and the accompanying videos are breath taking.  Especially the one showing a freighter pushing through the ocean.  Reminded me of John when he worked the freighters when he was a young man in Ontario.  Yes, they ship goods up and down the locks and it is always a wonder to me of all the different work in Canada.  

Sunday morning coming down by Johnny Cash keeps playing in my mind so off I go to finish off some of the chores I put aside yesterday when my daughter (here I go again is she mine or ours still) came from Vancouver to spend time with me.  She is off to be with her friend who has cancer and is very ill, seems she is the friend Debbie can turn to as she has shunned so many other.  Gayle, our daughter seems to be the person one turns to in need and she is caring, loveable and funny so she brings much to the relationship.  The hardest thing in this friendship for her is to be able to spend a night with her as she is so frail that she feels she is not capable of caring for her should something happen in the night.  She will make the decision to do this when the time is right and all I do is support her through these difficult times.

All for now.  Hugs to All and I miss you.  I think of the song "Am I losing You"  I hope not.

Xenia 
 
Réponse de Jimmie
19 avr. 2015, 22 h 38


Dear Xenia:

I don't want to hear about daffodils in bloom when our lawn is still covered in snow and the few croci silly enough to have sprouted are huddled miserably together against out basement wall in a vain attempt to find shelter from the icy wind off the Strait. It is not only Mr. Harper who has given my part of Canada the cold shoulder (though I have more patience with the weather than I do with himself)

I am just back from the nursing home.  I spent the last hour sitting in Sarah's darkened room waiting for her to fall asleep.  I was thinikng as I sat there how strange it is to find myself, within my family,  bereft of parants and any surviving member of their generation.  By some subtle sleight of fate's hand, my sisters and I have now become the "old ones" - no one in our family being older.  I am wondering what our function is now, our "calling", now that we are numbered among the old.

In the nursing home where Sarah now resides, the care takers refer to the residents as "elders".  I have always been fond of that word.  My son teaches in a remote, northern First Nations community where the term "elder" remains a culturally significant, historically rich term, a culturally honoured way of being in the world, a significant way of contributing to the continuity and deep health of the community  The focus of our daughter, Caitlin's, doctoral thesis was "Mothers as Memory Keepers".  Seems to me one of the sacred responsibilities of elders, traditional or otherwise, is to be exactly that -  memory keepers. Seems to me that you, Xenia, are in the process of becoming an elder for your family and for us - a keeper of sacred memories.  

Elders connect generations.  They carry with them the lives of those who have gone before.  They speak on behalf of those who no longer can.  It is an honourable way to live, an honourable way to be though it is not always recognized as such.  I wonder about the stories, the lives, the suffering and celebrations of those honeycombed tonight in the rooms beside Sarah's.  I wonder about the lives within lives they carry with them while awake or dreaming.  I wonder about mothers as memory keepers.  I wonder about you and the memories provoked each day as you move about your world.  I wonder about wisdom in the clutter of the age of information.  I wonder about my friends and family who have died, and are dead to most others, but remain alive within me.  I carry them with me and bring them to life for my grandchildren to the pleasure of both.

Nourish your memories, Xenia, though they are coloured by grief.  It is the privilege and burden of an elder to do so.  It is an honourable way to live, a sacred way to live.  It is an ancient and noble way to live.  It is a way of blessing our mourning - of rendering it meaningful and precious.  It is a gift we give to those who follow.

With affection and respect -

Jim  


 
Réponse de Xenia
20 avr. 2015, 15 h 10

Dear Jimmie:

Thank you for a wonderful message.  Your understanding of human nature is outstanding and your way of presenting this made my day.

You speak of being the elders.  I come from a family where tradition and respect was outmost for the elders (older relatives)in our family.  Like the French we never said Tu to our older relatives or friends, we had to say Vous, this was respect.  We listened to all they had to say, quietly of course, and learn from them.  I am Canadian of Ukrainian descent and life could be very hard and we learned much from our older relatives and friends.

With a large family of 14 we are now down to 5 living- 2 brothers and 3 girls, including me in the 3 girls.  Our father was a teacher however during the 2nd world war he didn't teach and that is along story. However, poor as we were money wise, we were rich in family, tradition and of course mom and dad insisted we get an education as dad lamented the fact that his older brother and sister never got educated as his parents paid off the local people with a couple of chickens so they could stay home and help with the farming, etc. when they first came to Canada.  He always said"For the price of a couple of chickens my sister and brother never got an education"

Yesterday was another chapter in my life.  My youngest brother, 68, is a schizophreniac, and had been a very successful stone mason, helped build a number of dams in B.C., then he became very ill, etc.  We lost him for a number of years as he just disappeared and our son in law found him living in Stanley Park.  Long story, our son in law and daughter brought him home and he has lived with them for 8 years now.

Yesterday Gayle, daughter, called to tell me it is time to have Stephen put into care as they are unable to provide the extra care he is needing.  He has COPD, cannot walk without assistance and many other health problems.  Poor Gayle, she feels so bad as she had promised Stephen he would not be put into a care facility.  I had to reassure her that the time has come and it must be done, just as I had to look at putting Dad into hospital as I was no longer able to care for him and it was detremental to my health. This is the Uncle who used to look after her when she was a child, her husband has to be a saint as here he is looking after his wife's relatives.  He sure deserves a medal as he welcomed this man into his home and made him welcome, took him to drs, helped him bath, prepared his meals and all that goes with caring for an ill person, ill in mind and body.

My son in law and I are committeship for Stephen so today I have to call the Public trustee and check out the protocol of further care for him.  As a family we have learned all the ins and outs of Government, federal, provincial, municipal and any other government policies that happen to turn up.  Like you my feelings to Harper are unmentionable.

With regard to the daffodils, I apologize, I forget that sometimes we who are living on the West Coast forget that spring comes a bit later on the prairies and further East.  I have a sister in Saskatchewan who tells me to stuff it when I tell her the flowers are out and we are walking around in shorts.  

Thank you once again for your understanding and being there when I needed reassurance.  I will nourish my memories and share them with my family as like you we have a history of 3 generations that helped mold us into the people we have become, proud of our heritage and proud of being Canadians.

With fond regards

Xenia 

 
 
Réponse de KathCull_admin
20 avr. 2015, 15 h 32

Dear Frustrated


I just read a little quote on the Virtual Hospice site and thought of you, "Sometimes we need someone to simply be there. Not to say anything or fix anything, but to let us know they are on our side, and that they care for us."


I wish I could do more to help you and ease your load, but I am on your side and I care for you. 


Katherine
 
Réponse de oldbat
20 avr. 2015, 16 h 33

Being a care-giver …

My husband has been in long-term care for three years.  I am often asked what that has meant for me. 

It has meant excruciating loneliness.

The unremitting recognition of losses to come.

Hard-won acceptance that I don’t have a life without him.  Along with the realization that I lack the energy, emotional and physical, to make one.

It has meant learning to live, one phone call at a time.  One visit at a time. 

Consoling him when, as often, he sees just how limited he is.  And cries for the man he used to be.

Crying with and for him.

Helping him accept the fact that he can never ever come home again.  Something he will never accept.

Accepting that fact myself.

Seeing friendships wither.  Having so little time and energy to give to anyone other than him.

Missing “dailyness”.  There is no longer anyone with whom I can share:  a meal, an article in the newspaper, a t.v. show, my bed.  Yes, that too.

Giving our beloved cat away, shortly after Karl had his stroke.  She couldn’t handle his absence either.  Cried and fouled.  Fouled and cried.  And I had nothing left with which to console her.

Cursing fate which gave me four abusive families, all of whom I divorced. This has left me with no-one, other than Karl. 

Living, loving, sleeping, caring alone.  Always alone.  Fearing that this is the way I’ll die.

Sorry all for the downer.  Karl's home has been in quarantine for the past two weeks.  No-one in or out.  And I've had a preview of life without him.

oldbat
 
Réponse de frustrated
20 avr. 2015, 17 h 04

Oldbat,


You have stated it so well. Thanks to all of you for caring.


vj
 
Réponse de oldbat
20 avr. 2015, 17 h 43

Here's the other side of the coin:

Karl gives me reasons to rejoice:

He’s still alive.

He feels joy as well as pain.  Laughs as much as he cries.

We can enjoy a meal together.

We can hug and cuddle and kiss.

He still loves to get dressed up and go out to a good restaurant.

We celebrate birthdays and Christmas together.

He reads.  Watches t.v. 

We listen to the same radio station, not together, but at least we can share our thoughts on the music they play.

He loves going to the Aphasia Institute.  Does this by himself twice a week.

Goes on outings planned by his home.

Learned to swim at the age of 84.

Learned to write with his left hand. 

Wrote me a love letter at Christmas.

Is “walking” even though we were told he never would.

Loves, love, loves people.

Loves me most of all.

I'll try to keep all this in mind next time the black dog of depression bites me you know where!

oldbat
 
Réponse de Xenia
22 avr. 2015, 16 h 20

Good Morning All:

And a great big thank you Old Bat voicing your thoughts on being a caregiver, pro and con.

Today I am on the band wagon again. Our government's budget has provided 6 months compassionate care for persons who take time off caring for a dying family member.  I applaud this move but am angry that spouses are denyed any help by being allowed the tax credit  for caring for a sick family member.

What is the difference, just because we took vows for better or worse, or did not take vows but are living with and are caring and have cared for a spouse who is dying. Does marriage mean we are not family members. 

I have written so many letters but to no avail and to-day I am on the band wagon again.  We all have to write and voice our righteous anger at being discriminated  against when there are stats that show spouses and family members are taking the burden off the health care system by being the caregivers for dying family members.

Once again we as caregivers must unite and let our MPs know of our concerns about being denied any help from the government and the election is coming up shortly.  You know where to vote and for what.

Regards

Xenia 
 
Réponse de Xenia
22 avr. 2015, 22 h 49

Dear All:

Further to my message above, I found this incredible item in the the Fact Sheet:Hospice Palliatve Care in Canada by the Canadian Hospice Palliatve Care Association.
CHPCA Fact Sheet-Hospice Plliative Care in Canada Updated March 2013.

 Harvey Chochinov-Distinguished Professor of Psychiatry at the University of Manitoba and Director of Manitoba Palliative Care Research Unit wrote:

"Unfortunatley, in end-of-life care, we do not have a vocal consituency:  The dead are no longer here to speak, the dying often cannot speak, and the bereaved are often too overcome by their loss to speak." 

Ihave composed, or is the word, written numerous letters to various MPs and to-day my package is going to Prime Minister Harper with these words and suggesting that his parents may also be looking for palliative care sometime in the future as do many of our aging parents, husbands or others. It may seem untoward but reality is reality whether we are peasants or Prime Ministers.

I have enclosed articles, to all, from various newsarticles regarding the need for palliative care and the report from the Canadian Palliative Care Association showing the research, etc.

This keeps me busy and idle hands make mischief so I have decided to use up some of my idle time to speak for myself and others who have gone through caring for a dying loved one. 

Hugs to all:

Xenia 


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