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Reply by oldbat
11 Sep 2014, 2:21 AM

Hi Xenia, Jim and all you other special care-givers.

I'm wondering If anyone else experiences what I call the "full tilt or no-go" syndrome?  From what I've read here, most of you are caring for someone from home.  And I imagine that's pretty much full-tilt all the time?  For me, because I'm handicapped and Karl is in a nursing home, it seems that he needs ALL of my attention at a given time, or none of it.  My days, or a great part of them, are spent either talking to or about him over the phone.  Doctors, pharmacists, specialists, dentists, you name it, it's all done through me, and by me.  And I wouldn't want it any other way. He calls me anywhere from five to 10 times a day,  sometimes that many times in a half hour period.  One day he called me 30 times in the space of 1/2 hour (yes I did the math!) to ask me what city we live in.  Sometimes he's happy or at least contented - those are the good times - others he's in tears because of something that's happened - or hasn't.  One day he called me in great delight because he'd smacked his then-room-mate, a very unpleasant gentleman known for beating other residents up.  I told him "well, good for you", whereupon he told me, with great glee, that he'd smacked him "three times."  I explained that his could get him kicked out of the residence, so he promised not to do it again.  Three days later, he called me in tears, to tell me that the room-mate had died, and he felt he'd killed him.  That took some sorting out!

When I'm not taking phone calls, I'm getting stuff he needs, books from the library, toothpaste, kleenex, goodies, etc. and trying to sort out taxes, pensions, stuff like that.  Probably, from where you sit, it doesn't sound like much, but because the only grocery store is a 20-minute hobble for me, one way, it can be quite a chore.  He comes here on Thursdays and Sundays, and I take him to all of his medical/dental, whatever appointments.

Wherever I go, I take my cell phone, just in case.  And I also sleep with it at night.  I'm terrified if I receive a call from the home.  Mostly it's routine stuff, but he does have a habit of falling out of bed, usually on to his head.  He gets out of bed by himself, using a pole at the side.  I refer to this as Karl's pole dancing!  I've even offered to sell tickets!

This probably sounds like a piece of cake to those of you struggling at home.  But it does mean that, at least during the day,, I can't really do much for myself and, by the evening, I'm really exhausted.  Dishes stay in the sink, the bed goes unmade, sometimes for days, and meals are just a rumour!  I told one of Karl's daughter that I feel I'm his upaid care-giver, on-call 365 days a year, and that I needed help.  Her response:  "You're simply fulfilling your marriage vows."

I've lived like this for three years, with no help from anyone.  No family.  No friends willing to pitch in.  This is why I finally decided to take on social services, and also why I felt so glad to stumble on this site.  There are days and weeks when I don't talk to anyone except neighbours, when I'm in the corridor.  The isolation has been, at times, totally overwhelming.  I'd love to do some volunteer work, perhaps on a help line, but until i see how the new regime works out, can't even contemplate it.  

I have a double-fractured femur, which has never healed properly, osteoporosis. osteoarthritis. peripheral neuropathy crawling up my legs - even though I'm not diabetic,  and, as I've just disovered, something called brittle bone disease - which apparently has a large genetic component.  I walk most of the time with a cane and,  sometimes, much to my disgust, use a walker.  the latter is definitely NOT in keeping with my image.  What's left of it! I have also struggled all my life with clinical depression.  

All this is NOT how I saw my life ending.  Karl and I travelled together, skiied together, hiked, played tennis. swam and moved to downtown TO just so we could be within walking district of theatre, concerts, movies, restaurants, etc.  Hah!  We also both had our own little companies and I taught at community college, something I was truly passionate about.

Sorry, as usual, i've gone on and on.  I'm so used to NOT talking about what's happening with us, that I'm struggling to find a balance, now that I'm aware of people struggling in situations similar to and, in many cases, much worse, than the one I face.

Please forgive the whine.  I'd so much rather have wine!


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Reply by NatR
11 Sep 2014, 3:21 AM

Dear Oldbat!

i picture you hanging upside down sleeping with your wings folded around you.  Funny how nicknames send a mental image.

truly I had to respond to your note before ending my day - because I get what you are saying - and I appreciated your long explanation of all you go through.

you are pretty amazing to be accomplishing all that you need to do while struggling to be mobile and deal with millions of tiny details all day long - ( and all night too since you keep your phone on all night too)

just to update you on my experience - I have been a caregiver in nursing homes off and on throughout my adult life - it was my first job in the 1960s as a teen, no training - then a couple kids a couple businesses and part time caregiving in between - then divorce and the need to support myself got me back into training to be a personal support worker.
i did that til I turned 60, then feeling like I was going to kill myself with working nights, double shifts, etc etc - I decided to shift my lifestyle in order to save myself from the heavy work of long term care - I took on voluntarily the duty of caring for a family member who was total care.

it may seem like it was a better situation as far as work goes - but my caregiving and heart collided and I threw myself into the work which seemed unlike work.

but Oldbat like you I understand the being on standby, on call, listening, sleeping with one eye open   Etc. Which is draining also.  It seems like a snap but it does take a toll.

i no longer do those duties but I wished I could have - it's impossible to be the Energizer Bin by forever.
i think it has taken me all this time - a year and a half at this point - to detach myself from the routine, listening, planning all the details meds, clothing, morning and evening routines - meals, and on and on it goes.

the worst thing was not being able to sleep.  Always thinking you need to be aware - it kind of infiltrated my nervous system...so I really do understand what you must be going through.

sorry for getting carried away / but I wanted to say at some point you will also need to focus agaim on your need to recharge the batteries and do things that are about just You.

i don't think you and I are in the same stage of caring but I am learning that the caregiver also deserves Care, Rest, Peace of mind;) and not to feel guilty about it.
ok so I am still working on some of this and I am slowly but surely moving on after the caregiving.
(does it count that I still think about my loved one every day?)
and yes I visit  but it's not the same - but it can't be the same - life changes and we have to change with it.

i just wanted to share a bit of my feelings with you and let you know I understand your situation and in time - things will change for you as well.  You sound very lovely, energized, caring  as I see in almost all the forum members.

we are all on a Caregiving journey - some of us just hopped on the bus, some of us Would like to get off and stretch our legs - others would like to sit behind the driver and see where we go next!

i admire you all, dear readers caregivers - we are all helping each other through the journey;)
now I will submit this and sign off wishing you a good night
don't know if I helped or not - but it helped me to say it:)
best wishes Oldbat and company!
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Reply by oldbat
11 Sep 2014, 3:51 AM

Dear NatR,

Thank you so much for you thoughtful and kind response.  I can't speak for others, obviously, but it was a HUGE help for me.  I'm so not used to any recognition, let alone praise, for what I'm trying to do for Karl, that what you wrote made me feel both understood and appreciated.

Please don't misunderstand, Karl does appreciate everything I do, even if he can't always understand why I get so tired.  He's the only person in my life who has ever given me unconditional love, and I return that fully for him.

I tend to try to dismiss "problems" with humour and decided, for a change, to try the honest approach.

I do so appreciate your understanding.  And I also "get" your heartbreak over having to give up your own particular task.  Except you haven't.  Every word you write is full of love.  And that is the care-giver's greatest gift.

oldbat - who's folding her wings around her 'phone and hobbling off to bed! 
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Reply by NatR
11 Sep 2014, 2:54 PM

Dear Oldbat1, 
thank you for getting what I was trying to say - yes I was addressing your note and it's important to say that we each have a totally unique story, a unified set of tasks, stresses. We each love and care for the person or persons we are Caregiving for

its to support us all as we each share our story  that matters!
to Xenia, Jim and anyone else I left out - please know how valuable each of you are - to your loved one, to the extended family who doesn't always understand or offer to help, who says - you've got it covered - well you do - but here at the forum we all Get it just a bit better - from our inside vuew
hugd and thanks  
feeling the love back;)
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Reply by Xenia
11 Sep 2014, 3:45 PM

Dear Bat and Nat:

Sounds like a pair on stage and a stage you have presented to anyone who is a caregiver and has travelled the same road you both describe.

At times it is despair, other times loneliness, no one understanding you, friends who think you read too much into the illness of the person you are caring for.  Then there is the guilt of having feelings of resentment when you are tired at the end of the day and you sit alone with a book half read and not remembering what you read, or dozing off in front of the tv and not realizing you have had an hours much needed sleep, then getting up in a panic that perhaps you didn;t hear your loved one calling you.  So it goes, however, as Nat has stated we need recognition and praise from one and all.  

I am so glad you received the praise you needed from Nat, Old Bat, I too do not know how to take praise.  When John's doctor tells me I am a good nurse and he depends on me to carry on John's care I feel sad and want to cry as if I am not entitled to the criteria for praise.  I've asked myself why can I not accept praise, is it because I feel I have not done enough or that I really deserve praise. However, reading your email and Nats' I begin to see some of the problems I have.

Good news, the local Newspaper printed my letter to the Editor regarding "Support for Better Home Care", it was edited for shortness but not too much and I do think this will bring some information to the many seniors who live in our city.  We have a lot of Assisted living and other types of housing however I have spoken with the Palliative care nurses and they are overworked and decry the need for more care as patients are discharged from hospital with no one to look after them or not knowing what care is going to be provided for them.  So, this may bring about some changes, lets hope that the Federal government does respond to the request of the Canadian Medical Association and put more dollars into palliative care.

John's asleep so I will go about doing some of my chores before he gets up, I try to do all this so I can spend his waking hours with him and not behind a pile of laundry, etc.

To all cheers for all the work you do for your loved one and be good to yourself as much as you can.

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Reply by AdoptedSon
11 Sep 2014, 3:55 PM

To Oldbat/NatR and others

What is the old saying?  Until you walk a mile in my shoes?

Truly I don't think many people realize just how consuming being the primary caregiver can be, and is, whether a loved one is in a care home, or at their own home.

It is all consuming, and unfortunately family, friends, fail to understand just how consuming that is, until they too go thru the process.  I can relate to the phone by the bed, and how you never truly sleep a deep sleep, for fear that you will miss a bump, a groan, that might need quick attention.

You feel trapped, and yet guilty for thinking that way, and then too, you may not even fully realize it, until suddenly the 24 hour/ 7 day grind is snatched from you.

All I can really say, is that sharing these tidbits, with others, does help, and you all should be commended for having the courage to bear your souls, so others can take strength from it, from knowing that they aren't alone.

I wish I had found this place, before, it would have helped but what's the other saying, 'better late than never'?

hugs to you all 
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Reply by oldbat
11 Sep 2014, 4:11 PM

Dear Xenia and Adopted Son,

You have both, obviously, walked many miles in our communal shoes and have the empathy to prove it.  Thank you so much for sharing.

And, Xenia, a big high five for getting your letter published.  Now, keep the momentum going.  Move from that newspaper to another, same song, different lyrics.  Then try magazines - Chatelaine, Home-makers (they're probably a good bet), local radio stations, etc.  I know, I know, that's a whole campaign - which you certainly don't have the time, energy or heart for. Start small, locally - then branch out.  It's like water wearing away stone.  At some point one of those pointy-heads in the government will realize something's up out there in care-giver land. 

You've got some fantastic material to work with on this site and I'm pretty sure you'll get a lot of support for requests to use quotes.  And, speaking as one writer to another, bring it on.  I give good words, too, and would be happy to help.

Adopted Son, I'm so glad you're finding us helpful.  I cannot express how much your comment about "the phone by the bed" meant to me.  Even though, neurotically, I bury mine beneath the blankets!

Hugs to each and every one of you.


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Reply by NatR
11 Sep 2014, 6:35 PM

To all of you 
Thank you for caring and sharing your stories!
just the few lines we all wrote each other here has obviously hit home for everyone :)

i  am glad I can Listen in to you all - and also tell a bit of my story 
we are creating a safe and understanding place for others to join us 
you are all appreciated;)

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Reply by Jimmie
12 Sep 2014, 12:56 PM

Stormy day inside and outside the household.  Sometimes the cupboards are bare of humour and equanimity. The day's wheel turns slowly, slowly - grinding away at your spirit - grinding away at patience and affection and endurance. 

Sorrow and more sorrow.  Sometimes the weight of the day is too heavy to lift.  Sometimes we need to be carried, to put our heads down and rest. 

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Reply by KathCull_admin
12 Sep 2014, 2:01 PM

Carrying you in my thoughts today Jim. 
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