Discussion Forums

Reply by Xenia
02 Jan 2015, 6:26 PM

Happy New Year Dear Friends:

Getting back on line after a few harrowing days.  Thanks for the kind words all, Jimmie, old Bat, Nat,Nounce, Jorola and all on this message board.

John is home, for how long I am not sure.  He was in hospital for 4 days, when he fell he banged up his arm and head quite good.  No damage, but they kept him in and of course all the OTs, Liasions, Health Placements, etc. had to talk to us.  We are being kept aprised of all the goings on to have John placed, that is if he cannot stop his wandering at night, Sun Downers, I am so tired and he is so kind and keeps saying please, please, what is wrong.

We had an experience on his release, or do they call it release-that is for prisons insnit, the nurses had told me I should bring in John;s clothes, etc and they would dress him and send him home in the transporter as he did not need the ambulance as he did when he went in.  Because I do not drive I would wait at home for him with the care aide.

Story gets good here.  The entrance phone rings at 10:30 telling me they are the transport and they will be up in a minute.  Good thing the care aide was across the street getting ready to come to our home, she saw them place John on the sidewalk, dressed in a nightgown from hospital, a pair of sox and his clothes in his lap in a bag.  They put the transer board back into the wagon and pushed John to our door and the care aide was livid as it was cold.  6 degrees in B.C. is cold as it is wet, she took a picture of him as he had a thin blanket on his body and up to his head.  She was livid and I asked the attendent what happened, they were too busy at the hospital to dress him.  When the liasion person called I expressed what happened and all she said is that is not her pervue.  What they Hey??

At this time I am too involved in John;s well being but I will get in touch with the hospital with the picture, etc and show them that once again a Senior is dumped when they need beds.  It is so sad as this is going on all the time and it has become a sad moment in our lives when seniors count for so little.

The care aide is here putting John to bed and I will try and have a nap.  My daughters were here with me yesterday when the Nurse came (RN-palliative) and stayed for a long time giving us information on what to expect with John and his future care.  He has to have his name on a waiting list to ensure he gets a care home close to our city.

I am very tired so I will sign off.

Take care

Report this post      
Reply by oldbat
02 Jan 2015, 7:23 PM

Thinking of starting a new discussion:  "What is wrong with people?"  Was just told by someone I have got very close to in the past few months that she didn't want to see me any more.  She feels that Karl and I are "co-dependants", that I get nothing from the relationship and should withdraw, am chronically depressed and need, not what my counsellor at the hospital gives me, but serious psychotherapy.  She says that I "bring her down" and she's got her own issues to deal with.    The strange thing is that, when we were together, we laughed a lot.  She has a great sense of humour and an excellent mind,  But she does have issues - the usual rotten childhood stuff and surviving cancer twice.

This is the third time this, or something similar, has happened to me since Karl had his stroke.  Why is it so hard to make new friends when we most need them? 

Christmas was tough.  Karl had flu and slept through most of it.  On New Year's Eve I watched "The Good Wife" on Netflix and felt some slight degree of optimism for 2015.  Not feeling that now.

Very sad Oldbat

Report this post      
Reply by Nouce
02 Jan 2015, 10:31 PM

Dear, dear Oldbat,

     Let this person go. Somehow people, often close family or friennds, just can't come up with anything helpful to say. Like my step daughter who told me I needed to take Pablo to the gym  to do more leg strengthening exercises, when the progress of the disease actually creates extremity weakness!

     Off your back. You are strong an good. May be an angel will call out to you--as an unknown woman did to me last week as I was wheeling Pablo down the sidewalk--she rolled down her car window and called out, "You're doing a good job taking care of your husband!" If not, let me be your "angel/messsesnger." You are TRULY the Good Wife!!


Report this post      
Reply by Jimmie
03 Jan 2015, 2:26 PM

When I was a kid we lived in a flat in Halifax. We had an old wringer-washer machine shoved into one corner of the hall. When Mom and Dad were not in, my sisters and I would take slices of store bought white bread and feed them through the wringers making them as flat as communion wafers.  Then we would lift the heavy lid on our Kemac kitchen stove and placing the flattened bread on a homemade web of wire coat hangers, "flash" toast the bread on the open flame inside the fire box.  Not a particularly safe ritual, but a tasty one.

Some darker days are like that in their disappointments. It's as if the Fates wake up in particularly foul moods and wanting to squeeze yet another ounce of spirit out of us, decide to put us through the wringer yet another time in yet another way - to flatten us out lest we have a moment of peace or recovery: a critically ill, disoriented man is dumped like a battered old garbage can outside his home; a friend who brought some light and laughter into your life abandons you because you "bring her down" (What did she expect - Mary Poppins sucking on helium balloons?). Is it any wonder the two of you, Xenia/Old Bat are exhausted and saddened.  Sometimes I'd like to grab Life by the throat and just shake the shit out of it!!  God damn it. Those three Bastards never seem to run out of miserable ideas.

And, while I'm talking about celestial beings - mythical or otherwise - I gotta say that I have traditionally had trouble with angels (I used to think they were all called Harold as in "Hark! The Harold angels sing...."), but having said that, I do agree with Nouce.  There ARE moments of grace, moments of light. When I was hospitalized during the treatments for my second cancer, there was a lady from the kitcen staff who brought me my meals every day (meals I never ate), and returned to pick up my untensils an hour later.  She was magnificent!!  She was a free-spirited, uninhibited, full bodied angel who by nature, and probaby nurture, just radiated, RADIATED life, energy, and absolutely genuine affection for those she "served".   What a joy it was for me when she came into my room!  What therapy!!  All the words, all the complex medications could not match her ebullient smile, and the saucy sway of her hips.  Maybe she couldn't cure my body, but she sure did wonders for my spirit.  She in-spired me - breathed life back into me. There ARE people like that!!! There ARE moments like that!

In spite of the indifference and sometimes, lets face it, the incompetence of some health care workers; in spite of the friends who abandon us "because we bring them down", I believe as does Nouce in the existence of such angels, AND, with all due respect and with much, much affection, I believe that the two of you have been such for me and for all the others on this site.  You are two remarkable individuals, two wonderful - wonderful individuals.  Let me say it again in case your hearing is as bad as mine:  YOu are two remarkable, two wonderful individuals who have come to "grace" my life, and the lives of others near and far and for that we are all deeply grateful.

WE have an animated movie we show our grandchildren when they visit and I no longer have the energy to play yet one more game of hide-and-seek.  The movie is called "Happy Feet" - perhaps you've seen it.  It's about penguins and there is a scene towards the start of the movie when there is a fierce blizzard blowing and the penguins gather together in tight circles to protect each other from the bitter wind.  From time to time, those penguins in the center of the circles having been warmed and protected by the shielding bodies of the others, move to the outside, and the outside circle of penguins move to the middle.  In that way of moving from being cared for and then caring, the community survives. WE are the same - gathered together in the bitter wind from time to time desperately in need of being cared for, and from time to time - in moments of strength - offering care.  In that way, we manage to stay standing. IT is an old, old, old story.  What is new is that it is now our turn to play our parts as best we can.

Enough, I am going to make some toast.  I am going to check the snow drift outside our front picture window. If I look pathetic enough standing there - perhaps my neighbour with his snowblower will do me yet another favour.  It's worked before!

I have retired my magic wand.  For years I hoped I could wave it and make all the troubles that have confronted my family and those I cared for vanish.  I am not a very bright person.  It has taken me a long time to realize that such solutions are not within my power.  All I can do is take my turn  in the outer circle, and not be shy of asking to move inside when the winds become too strong and biting, and my reserves too low.  MY hope is that the both of you move to the middle and find some comfort in those who surround you with their love and companionship - including those of us on this site who have come to treasure you.

With affection and gratitude -

Report this post      
Reply by oldbat
03 Jan 2015, 2:46 PM

Oh Jim, oh Nouce how wonderful to know you.  You beamed a little ray of hope into what was a very dark day for me.  After three years of, largely, unadulterated hell, I was just starting to believe that maybe, just maybe, things could get better.  I have so missed dailiness in my life.  No family to chat with on good days and bad.  A  couple of stalwart friends for sure, but they are, rightly, enmeshed in their own lives.  So it really has been just me.  And Karl of course.  He gives me moments of great joy but, as we all know, there are always those dark, seemingly hopeless, days leading to weeks of near despair.

Then, of course, there are my marvellous fellow-travellers on CVH.  I really don't know what I would do without you.  We've shared moments of happiness and more of misery.  But we HAVE shared.  And, to me, that is the key to what enables me to go on now.  You are my angels.

Report this post      
Reply by NatR
04 Jan 2015, 12:53 AM

Good evening all
i do declare that between all your notes I am flabbergasted or feeling for you or laughing with you -  
your story about Johns homecoming was hard to believe - I do hope you write them - the hospital a letter, or better yet an open letter to the newspaper.  That is so shockingly thoughtless - I cany even say how badly they treatEd your John!!

 Jimmie your letters are masterpieces taking us all back in time
and Nouce  hugs to you too!!

you are all in my thoughts
wishing you a warm and trouble free evening / night 

Report this post      
Reply by Xenia
04 Jan 2015, 10:48 PM

Greetings to All:

To-day is a very sad day for me and our family.  John is in hospital and is being placed in a care facility as soon as one can be found.  I have been weepy, crying and angry at life since Friday.

John was discharged from hospital on Wednesday and I noticed some definite changes with him, more anger in his eyes, changes from his quiet nature and speaking to me in a different tone.  He was in and out of bed every few minutes, wandering all night, asking what time and wanting to out the condo door.

I kept everything in check until Friday evening, past, and John went to the condo door and I had to stop him, just then his sister called from Windsor and I was trying to reason with him, all of a sudden he had such strength and I had to hang up, called my daugther and son in law to get them here.  John had no shoes on just his pjs, t shirt and sox and was wanting to get out.  He was testy and then he changed to very angry and began to threaten with his words and actions.

I called 911 and wouldn;t you know it Friday, they tried 3 times to get me to the ambulance and I told them my husband was agitated, angry and threatening, did we have any guns in the house, no.  Then we waited, John still angry ordering me to come back into the condo as I was standing in the doorway.  Got through that somehow and dughter showed up with husband, phone rings and it is the police.  She spoke to them, no ambulance would show up as they were too busy.

Three cop cars show up at the front of the building, I am crying, John is angry, talking to my son in law, in come 2 RCMP trying to reason with him.  He kept telling them she knows what she did, on and on, then another RCMP officer came and offered to take daughter and John down to her car so they could take him to hospital.  No as we were afraid,  RCMP left after 3/4 hour and we were alone with him.  Daughter stayed the night, John refused to take his meds, was looking for me as he was so angry I was in the second bedroom with lites out.  He walked most of the nite, in and out of bed, finally at 3:00a.m. told daughter to give him a banana and his atavan and he ate it and went to sleep until 7:00 a.m.

Other daughter in Vancouver phoned all over trying to find out if there was a room at a care home even if we had to pay $3000.00 as it was not safe for me or them to have John at home.  On this went, John cooled off some, Palliative nurse told us we had to take him into hospital with an ambulance and leave him there once he was checked in and under no circumstances take him home as it take 6-8 weeks to have a case worker assess him.  We all were in shock but waited for son in law from Vancouver to come as the palliative nurse had spoken to him before and knew he had the where with all to deal with the hospital people.  Other daughter and our son came in from Vancouver and we waited for son in law to come.   All plans being made and how we would get John into an ambuldance, etc.

Then at 12:00 noon (do you believe in angels or some higher power) John;s doctor is on the phone, on a Saturday, I knew he did some weekend work at his office but was too wrapped up in all going on at home) he asked about John and his stay at the hospital, I broke down and told him we were taking John to hospital and he said yes, put our son in law from Vancouver on the phone and he told him he was getting in touch with the ER doctor, etc. etc and would call back.  Which he did, spoke to son in law and told him that John was to stay in hospital and they were to find him an insitution to place him.  Then asked to speak to me, I was crying and as I type this I am weepy, Dr. told me you have been a good nurse, wife, caregiver, etc and don;t blame yourself, John might hurt you and it is not safe for you to bewith him at this stage.  

Here I am crying as we will be married 59 years on the 15th and we will be seperated, as if that matters, he asked the kids to-day when they went up to see him where is mom, then said he didn;t want to see me as he knew what I was doing and that I had the RCMP on him and he would get out of the condo sometime and out of the hospital.  What a way to start the new year.  

I was prepared for John;s passing, but I was not and am not prepared for the strange person I see now.  Life hands us a lemon and lord, I tried tomake lemonade but it sure didn;t work this time.  I am just biding my time and have been told by the dr and the family I am not to speak to the social worker from the hospital as I am too upset and they will deal with all the problems and work out the arrangements.  I have the power of attorney for John as does our son in law.  This was a good thing that John and I agreed to a number of years ago and it will be a big help when all else fails.

Sorry I am dumping on you but I am weepy and needed to talk, enough of burdeneing the kids, they had a number of nights with John and understood the heartbreak and how hard it is to live under these conditions.

To all , your recent messages have kept me going even though I did not write so please keep writing we all need the support.

Hugs to all.

Report this post      
Reply by NatR
04 Jan 2015, 11:13 PM

Dear xenia

my heart breaks for you both - john and you / a team for so many years
 Glad you were able to share what happened here with us and so glad your family could come instantly to your aid
there is no easy way to get through this. It has been coming closer and finally john is in a place where he will get the care he needs  

you our my dear lady now have to take care of yourself  
it is so very difficult to  accept this change in your husband and your need to be protected now 
xenia pleaSe keep writing and stay in touch  

you are in my thoughts and I hope you will be able to get through the next few days and weeks . And handle all of this as   as it is - it had to be This way for your safety and for john too

xenia keep us informed and know what a wonderful wife and caregiver you are
sending you thoughts and please listen to the doctir who obviously cares very much about your feelings and well being - as much as johns

Report this post      
Reply by oldbat
04 Jan 2015, 11:36 PM

Dear Xenia,

You are so brave.  My heart bleeds for you and for John.  You are both hurting so much.  Hopefully, once things have calmed down at the hospital or home, he will be more his old loving self.  Is there any possibility that he might have had a stroke in the last few days?  That would account for the drastic change in his behaviour.

As NatR says, please do take care of yourself and let your daughters look after you, too.  Surround yourself with all the love your family and friends have to offer then, when he's settled in a bit, do go see him, with your family.  Your presence will certainly reassure him, which is what he's going to need.  When Karl went into long-term care I was there with him every single day for the first few months.  I'm not sure if either of us would have made it under different circumstances.

Xenia,  please stay in touch with us, as and when you are able.  You are travelling on a very rough road, do let us be there to empathize, sympathize and let you know that we, too, care for you.

Report this post      
Reply by KathCull_admin
04 Jan 2015, 11:36 PM

Dear Xenia

How frightening the weekend must have been for you.  You must be exhausted.   

In the midst of all this turmoil, how wonderful your children and their spouses are able to be there for both you and John physically and emotionally.   

Xenia over the months you have supported so many in our community. I am sending you warm thoughts and wishes, wrapped in understanding and caring.


Report this post