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Reply by KathCull_admin
06 Sep 2014, 3:15 AM

Hello everyone,
A new thread was posted this evening by OldBat, But who advocates for me?  I thought members on this thread might be interested in reading and responding.  Here is a short quote from the post


Oh, we’ve all heard the warnings:  “Take care of yourself first.”….Right.  So in between the in-home care-giving, the visits to the hospital or nursing home, the management of money, medicine, information, appointments, the cooking, cleaning, running errands, the whole apparatus of living for two, who may or may not be living together, you might manage to find time to read a chapter or two; watch part of a t.v. show you’ve always enjoyed before nodding off; think about a swim or a walk or even spending time with a friend, only to realize that there is something so much more important to be done for someone who certainly is not you.”

Take care all

Katherine

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Reply by Nouce
06 Sep 2014, 5:07 PM

Yes, it's kind of odd. My hospice social worker sent me a flier about events for caregivers, such as an evening where we could prepare gifts for the holidays!  But I'm now under doctor's orders to provide 24/7 coverage for my partner. And many of those hours are my own.

But I just came from the funeral of the husband of a close friend. And since I did have someone at home covering, I took a bit of time to have a cup of coffee and cry by myself before returning. 15 minutes. It helped.

Nouce
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Reply by oldbat
06 Sep 2014, 8:09 PM

Now I'm just angry.  What kind of "doctor" would order you to provide 24/7  coverage for your partner?  And you just got back from a funeral and managed to have a 15-minute break for coffee.

My God!  What kind of world do we live in?  Is everyone turning turning into thoughtless, heartless automatons? 

You, and so many others, deserve so much more than this, Nouce.  I'm not just angry.  I'm heart-broken.  For you.  For me.  For us all. 

oldbat 
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Reply by Jimmie
10 Sep 2014, 12:20 PM

Dear Nouce:

I was thinking about you this morning and wondering how you are?

Jim
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Reply by Nouce
10 Sep 2014, 1:14 PM

Thanks, Jim,


     I have a calendar nearly arranged for daytime care during the weekdays. It's a bear trying to organize this, but I'm so thankful for the friends and family who are ready to help. So I'm breathing a little bit easier. My fear is how I will manage if this coverage-care need goes on for a long, long time.


Nouce    


 


 

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Reply by eKIM
11 Sep 2014, 12:39 AM

Hi Nouce

I can't add anything useful to what has been said, but I just wanted to let you know that you are in the hearts and minds of all of us here at Virtual Hospice.  I hope that this fact brings you a small measure of peace.

You are in our hearts and minds.

eKim 
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Reply by Jimmie
12 Sep 2014, 12:35 PM


Dear Nouce:

I am happy to hear that your friends and family are going to help provide some much needed respite for you.  I know it can be difficult to organize such support especially when you are already weary from the challenges of providing care. Hopefully, you will be able to find some time to rest as a result of this help.  You might also find that just having regular company in the house provides comfort for you. Being the prime care giver can be a very lonely and isolating experience. I know I often appreciate being able to get out when my respite care arrives; however, there are also days when I just stay home when they come and spend the time in quiet conversation with the respite providers.   

Take care

Jim
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Reply by Nouce
12 Sep 2014, 3:01 PM

Thanks, Jim,


These sound like wise words. I'd also welcome any thoughts about how to deal with the occasional panic that caregiving will go on forever. It seems to hit whenever we have to make a transition to a new pattern of caregiving. 


 


Nouce

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Reply by Jimmie
17 Sep 2014, 6:59 PM


Dear Nouce:

I was wondering if the scheduled respite your freinds and family were graciously going to provide has begun yet.  I hope so.  Perhaps if it has, you will find more time to care for yourself, and maybe it will also create a deeper sense of understanding among those volunteers, and in so doing increase your sense of living within a community of care, rather than in isolation.

If you find a free moment some time, perhaps you could write and let me know how you are.

Jim

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Reply by Nouce
17 Sep 2014, 11:51 PM

Thanks, Jim,
     My sin-in-law is here all week, and that has been a wonderful comfort and break for me. I'm takin some time to work on a longer-term care plan that won't have so many little pieces--although it will cost more (I'm in the US).

Nouce
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