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Reply by NatR
16 Sep 2014, 3:56 PM

Good morning Xenia and all the old bats and old bags readinh this - please don't take offence - it is meant as a form of endearment and friendship as you at talking to each other with great stories and humour!

Xenia my heart goes out to you as well as everyone else - your description of walking  down the street  and seeing your reflection - not really feeling like the person you see there - I totally get that

yestrrdsy I met a friend for coffee a couple blocks from my apartment and due to a health upset of my own - I took my cane for support !  I didn't look like myself in the glass windows I passed
I hear you - inside we are still so full of life and still feeling much younger despite our need to. "Lean" on some assistive  device  - we still have so much to give and offer to those around us .

xenia I am sorry you needed to call and talk  to a crisis line - I really wish (madam moderator) that there was a personal voice or instant chat connection for those moments of crisis. just to air your worries and  have someone listen on the other end / that's an important connection too!

Xenia it has to be so hard to see your beloved John as each day takes a bit more of his energy
I hope that you accomplished the shave for him and I hope today will be less stressful
I want to say  that I wish for you / someone to be with you during this very difficult time. are there any hospice volunteers in your community who could spend time with you both? You need the support as much as John does - that's my thought anyway.

congrats Xenia on getting your letter published and some attention drawn to the need for more support for families and patients at home

thats a wonderful opportunity for you to share your feelings with others
take caretoday 
sending my thoughts to you and everyone
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Reply by oldbat
16 Sep 2014, 6:11 PM

Hi everyone - with a special shout-out to Xenia and Jimmie.

Xenia:  I, too, understand the not always welcome sight of our mirror image.  But that image does NOT reflect the caring, supportive person you are now.  So, next time that happens, give the mirror a big kick - add another one or two for me - then dance your way down the street.  You are who you are inside and we all know that mirrors lie.  In my experience, anyway.  And,btw, i haven't done the crisis line thing yet, but have been SO tempted to on occasion.  In fact when I  was at my doctor's yesterday, bronchitis has morphed into pneumonia, she told me I should, given the total lack of support from family and friends here.   i honestly could not believe, whe I emailed Ugly Sister #! - his daugher) asking for help yesterday, that her reply was:  "Well of course we-ll do what we can when we can (they don't!), but we-re' both so busy with family and work."  I, of course, l am sittting around reading chick-lit and gorging on bon-bons.  I'm sorely tempted to e-mail them both, the next time this happens and say "well you have two choices:  "either someone in the family picks up the slack when I'm too ill to cope, or you can pay someone to do what I do 365 Days of the year - for free.

Sorry for the  rant, everybody.  I'm just a tad irate today!  (Sound of hand beating chest!)

And Jimmie, ah Jimmie.  You're a broth of a boy,so you are.  Broken heart and all.  And I"m not making fun here.  I feel for you and what you're going through so  deeply, so don't be misled by some of my sillier posts.  As you said:  "Good belly laughs needed."  And sometimes, like now, needed more than ever.

I am familiar with the progress of Huntingdon's and so can truly empathize with you and grieve with you and your wife and family.

Like you, I long for someone to share the physical side of this, the hugs, the intimacy that can help if not totally take the pain away.  Paralyzed side keeps Karl from giving me the all-embracing hugs we both yearn for.

Please continue to share with us.  Laughter, tears, virtual beer/wine/vodka and any silly songs we can all think of.  We'll send them your way, you keep 'em coming back, Bye!

A mythical "jar" and BIG" virtual hug to you.

Bitchy Oldbat

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Reply by AdoptedSon
16 Sep 2014, 6:28 PM

@ Oldabt    

Sorry but you can't use the title 'bitchy' as that one was given to me by the lovely private home care outfit, and a title I wear with absolute Pride.  

But you did hit on something that I never thought about, which is the sudden isolation many of us may feel, the loss of those hugs, those soft touches of holding hands, of others who care.

I think many of us, wind up feeling like we are under appreciated, by 'others' but you know, the one we care/cared for, do appreciate us, and I think that is what kept it together for me.  THey were/are the one constant, that despite all their pain, their suffering, their fear, they knew we were/are there right with them.

And that did/does help one get through the day, so hang tough all of you, it may not get easier, others may seem to distant themselves from us, may seem unwilling to lift a finger, but we can take comfort in the one thing, they can't.

We are doing something that shows we care, that isn't just empty words, because we do it, every blessed moment of every single day, with deeds, with action, not with empty words or condescending excuses.

Hugs to you all,  
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Reply by oldbat
16 Sep 2014, 6:33 PM

Thank you Adopted Son,

I needed to hear that today.  

I know that Karl needs and loves me, he tells me that in so many ways every day.

No-longer-bitchy Oldbat 
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Reply by Jimmie
16 Sep 2014, 10:54 PM

Sarah is in bed watching a Neil Diamond DVD.  She knows every song and though she has always felt she couldn't sing, I can hear little snippets of her thin voice from time to time - which is lovely.

I have been sitting here for a while now quietly considering the remarkable lives I have  come to know (however slightly) through this thread. I am sorry that we don't have the pleasure of meeting in person.  It would be good to fill in some of the gaps - I hear your voices (actually, my version of your voices) as I read your posts.  But I am missing the tone, the sound of you, and the look of you as you speak.  I understand all too well the profound need - at critical moments -   to actually speak with an embodied voice as my two lady friends have so poignantly noted. I believe that the comforting presence of another is a fundamental  need regardless of our age. Those of you who hold another under such trying circumstances, need to be held as wsell.  It is staggering to hear how such support is missing in some of your lives.  Staggering and outrageous. 

It feels like a Sunday night.  Neil has stopped singing "Sweet Caroline" in our bedroom.  Sarah has probably fallen asleep.  The house is still.  Is it possible, without being found guilty of blasphemy, to quietly note and commend the sacredness of each one of you.  To honour the struggles - the grief, the anger, the weariness, the loneliness.  Is it possible - without falling into cliche or platitude - to convey my admiration for each one of you - your unvarnished, broken holiness.  I know how shallow such words can sound  and hesitate to use them, but  I can find no better ones to convey my feelings tonight with the house as quiet as it has become.

It will not get easier, certainly not in this house and probably not in yours.  There is no perfection to be sought or claimed.  Only stumbling, falling, and struggling to our feet once more - again and again - as others have before us. 

I am writing to honour all of you tonight.  Having said that, I am content.

With respect and affection -

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Reply by oldbat
17 Sep 2014, 12:38 AM

Well Jimmie you could never, never , never be accused of writing shallow words.  Yours are as deep and as crystal clear as a sunlit pond, which reflects the kind nature living within it.  I take comfort every time I see your name on a post, knowing that I will either be immeasurably touched or enjoy a rousing belly laugh.  And either is just fine by me.

You are an excellent writer.  Is that what you taught?  I taught in a design college - marketing, writing, creative concepts, like that.  Loved teaching passionately and was devastated when the college was sold.    I also have my own little writing company (www.the-right-words.com).  Obviously I'm not doing much with that right now, haven't since Karl had his stroke.  But, this summer, Karl and I "starred" in a 4-minute video featuring part of his treatment.  If you're interested, check out this link:  http://phantamedia.com/client-files/1145-IAMKARL/v2  I also wrote a small book this summer based on Karl' journey through stroke.  It will be translated into seven languages and published around Christmas, or so they say.  My doctor told me that I had "over-extended" myself.  But you know, writing has always brought me so much pure pleasure that I couldn't resist when I was asked to do both  Now of course I'm paying for it i- bloody bronchitis!  But I'm told this, too, shall pass.  And everything was worth it, I just look at the pure joy on Karl's face when he watches the video.  Not so sure about the book.  He has no memory of much of that time, and I found some of it incredibly hard to write.  But there was humour, even in writing something like that.  Fleeting moments of sheer giddiness that I thought I had forgotten about.  So we can share those together, whenever he feels strong enough to read it.  So far he's resisting, but I don't think that will last once has has an actual copy to hold.

(Sidebar:  Colleen and you other godesses of this site:  If I've infringed on privacy boundaries, please forgive me and delete.  I'm still learning!)

Had one of those "small pleasure" moments this afternoon.  An incredibly introverted woman, who lives on my floor, knocked timidly on my floor.  A multi-time cancer survivor who looks like she could be blown away like an autumn leaf.  I invited her in and we sat and chatted for an hour or so and then she disappeared like thistledown. She refused to have as much as a cup of tea, but it didn't matter.  She had made that incredibly difficult (for her) effort and was happy just to perch.  And I was just as happy to sit and be with her.

So tomorrow, this is for you Xenia, I am once again taking on social services - but this time in person.  A case worker is dropping in to see what else they can help me with.  time to bring out the alphabeticized list!  Which I have yet to write.   And my doctor told me yesterday that if I don't get everything I need (HAH!) to let her know.  She has someone who can, and will, help me further.  She also mentioned, LISTEN UP XENIA, that she has been to a number of conferences in the last couple of years focused on the concerns of care givers.  She really believes that changes are coming.  So hang in there, y'all!  I'll tell you one thing though, they won't be coming from humanoid Harper.  He doesn't do empathy!  I'd like to buy him and our fabulous Fords - have you heard about what they're up to now - on that one-way trip to Mars being sold, I believe, by Rupert Murdoch - or someone of that ilk.

O.K.  that's me done for the day.  

I wish you peace, rest and a modicum or more of joy.

oldbat - who certainly does run off at the mouth! 
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Reply by moderator | modératrice
17 Sep 2014, 1:35 AM

Hi OldBat,

You have not infringed on any privacy rules or terms of use. How much each member chooses to share and disclose is up to the individual. We recommend not sharing email addresses or phone numbers because this could lead to unwanted spam. From time to time members share blog posts, photos and videos.

The video "I am Karl" is priceless. Thank you!!
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Reply by Xenia
17 Sep 2014, 4:28 PM

Good MOrning from the Cloudy Wet Coast of Canada:

To-day is my respite day and am going out with a friend who used to go swimming with me, she is originally from New Brunswick and was afraid of the water, myself I was born and raised in land locked Saskatchewan and the only water we had to plunge into was sloughs (if you know what these are...water holes with muddy edges and slippery as old get out) then there was the pool at the park.  Depth, up to a teenagers ankles, no problem as the girls usually never went looking for water, had to stay with mother and learn to can and can and preserve some more while the boys snuck off to the watering holes coming back refreshed.

Oh well, I digress.  My sister who was a registered nurse many moons ago and not too familiar with the new medical terns but very good as a friend, etc.  However, she called on Monday asking me how I dealt with John and it has been going on so long.  You don;t seem depressed, you are not crying...well I guess it must be my higher power I replied and I have learned to help myself, being a person who wont take it sitting down I believe my living with a palliative husband I found virtual hospice and with emailing I get more help then I would going to a counsellor or psychatrist as my friends on the virtual hospice have been there, done that and are going through all the same problems I have or had.  My sister panics a lot and looks at the negative more than I do and living with one day at a time has helped me.  Guess AA loves us all using their moto.

John has been having some mental changes, I am not saying he is losing it more, however, yesterday he became very adamant that I told him his haircut was at 9:30 and not 10:00 a.m.  Just let it go, then he asked me if I had my hair cut as well.  He was aware that I had my haircut last week but doesn;t seem to remember.   Also, he asks more of the same questions and if I answer in a manner he thinks I told him otherwise he seem to get angry.  I know his illness is frustrating and his meds, morphine may be affecting his memory more and more.  

Oldbat and Jimmie:  You speak of missing the hugs of your partner, yes, that is so true, now that John has his bed next to mine, I find I look for him in the middle of the night.  With him going to bed so early I go to bed alone about 10:00 p.m.  We used to laugh before we went to sleep as I would say:  John, do you love me, No he would reply, I would then retort I would have a fit if you said yes. We have been doing this for years and I miss this bit of humour and I sang to him at night.  The oldies, Sentimental Journey, etc.  so went our lives.  I do sing for him but the kids tell me not to sing when they are around so you get the drift of my voice.

Old bat>  Loved the video "I am Karl".  Will have to have my son in law view it as he had a stroke 6 years ago, he was 53 and had to quit work, etc.  He recovered well but still feels he is disabled and doesn;t seem to try to help himself as much as he could.  Mind you he is a great son in law but it has been a hard time for daughter as they are both so young.

Now that I have given you our family history I must put pen in the ink bottle, use the blotter and seal this missive and get on with the days schedule.  Make John;s lunch, get his meds ready and get myself out of the door before I think I have to stay home.

Hugs to all and be good to yourself, yes I know this has been said by everyone but do try it.


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Reply by NatR
17 Sep 2014, 6:44 PM

Well ;) thank you Oldbat for sharing that very touching video -really heartfelt and loving connection you and Karl have :) it was very sweet ;)
Jim you  have a wonderful way with words.... And you are bringing so much to the chat thread.... I appreciate you and I know everyone else does too!

xenia - you are also a rare treasure and have warmed my heart : )

carry on and have a good day - no matter how it unfolds - wishing you all the best

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Reply by oldbat
17 Sep 2014, 7:55 PM

Has anyone ever noticed that, when you most need it, technoliogy will surely fail?  Because my doctor has sentenced me to solitary confinement for at leasst two weeks, I thought "ah ha!  Catch up with Netflix!  Nope.  I watch on-line, and get the blue screen of death every time it gets to one of the really, really interesting (read gory!) parts of Breaking Bad.  Hmm!  Well, lets get one of my treasured CDs  on.  Maybe Mozart can make my day.  No way.  CD player doesn't work.  Hate watching TV during the day, but may be forced to now.  Guess what, TV dead, tooI  Is there a metaphor folr my life lurking in here?

Just asking!

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