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I'm a Caregiver...


arogers

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"Bless (his) her heart." It's a comment we hear alot in the south. Usually I hear it when the person has done something we don't think is exactly appropriate. After having read the posts to Sue's blog I decided I'd have a try at getting everybody's blood boiling.

 

I won't try to speak for Sue, let's just say that if I were writing her message I would not have meant it to be chastising to caregivers in any way. I don't think Sue did either. I would not have meant caregivers should neglect other responsibilities in order to be seen on the board. I don't think Sue did either. I believe Sue's comments were an innocent observation that caregivers need support from other caregivers just as survivor need the support of other survivors.

 

I remember posting to a survivor's thread once and receiving a sort of chastisement that I am not a survivor and really don't have much right to post to a survivor's topic. I decided I should be a little more selective about my posting because maybe my comments aren't received very well from stroke survivors. I still post to survivor's topics, but not as often.

 

Burn out? The last time Bill was in the hospital (third time in a month) a nurse told me, one more time, how good it was that Bill has me to take care of him and how I just need to remember that. Honestly, I was rather irritated after another comment she had made that I won't go into here. I looked at her and told her I am well aware of my husband's need for me to care for him. Then I asked, "what about me? Who is here to care for me when I am tired, when I am ill, when I need a day off?" She looked at me as though I had three eyes. The nurse care manager who was standing with her just nodded her head in agreement. She had NO response. This is an RN who deals with cardiac care patients everyday and she had no idea h

ow to give a caregiver a hug or a word of encouragement. She did comment later when my husband was getting ready to come home how concerned she is that her 25 year old daughter is close to having a baby and she just doesn't know whether she is ready to care for a baby or not. I just found it curious but I'm not sure whether I'm a bit "weird" or not.

 

When I am feeling more than burned out, when I'm feeling like a pile of ashes left by a bonfire, I find strength, love and care at the Stroke Network. I am invigorated anew when I read a post by a bewildered caregiver just beginning our journey. I'm comforted when I read responses posted by stroke survivors supporting one another or thanking the caregiver once again for giving to another without condition.

 

I wonder and worry when I haven't seen a post anywhere by one of the names I've come to know as "caregiver". In my heart I know though the reason for their absence. I know there are 24 hours in a day and some days there just aren't enough hours to find our way "home". Believe me, if anybody "gets it" about caregiving we do. Four years, deteriorating cognitive ability due to vascular demntion, incontinency, inability to carry on a conversation or make decisions...yes, we caregivers get it. You see, we caregivers are the ones to care for those unable to post and be an active part of The Stroke Network. We are those who know the road the "newbie" will travel and we are the ones who want to provide the encouragement, strength and hope only we can provide.

 

Merry, Merry Christmas to all!

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Guest lwisman

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Ann,

 

Thanks for your post. As a survivor, I do not think about caregivers enough. Anyone who takes on caregiving as you and Sue and so many others on this board have done is a saint in my book. It is a thankless job.

 

Survivrors, especially new survivors, sometimes have a difficult time when they hear someone showing concern for the caregiver. They may feel like they got the rougher end of the deal. Hard to say.

 

One of the things this board has done for me is to make me more aware of caregiver problems. I have a neighbor who has cancer and has been in and out of the hospital for the last six months. I find myself reminding his wife to care for herself. The other day she showed up at my door because she was making a cake and discovered she was out of eggs. I found myself glad that I could show her the kindness of an egg. Strange.

 

Take care of yourself and have a Merry Christmas.

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Ann:

 

luckily I saw Sue's post & chastised reply to the post to understand where you are coming from & what you are talking about. As we all know no two strokes are alike neither is caregiving alike. yes agreed in the begining months fighting the insurance company, advocating patients needs all these things are common for all caregivers. but as survivor doing more for himself or herself caregiving differs, & at that time I will take offense to someone calling my hubby my caregiver. please don't get me wrong. I aprreciate all the caregivers who chose to stay by their spouses in their hour of need. but I still think you can not call all the spouses caregivers. you, Sue, Sarah & Jean I can understand being caregivers. yes today my hubby does have to drive me on highways, but just for that fact he is not my caregiver. I make my own decisions. we are team together. I think stroknet is best place to give & receive support. I get so much out of Sue's blogs, I realize what more I can do to improve life of my hubby.

 

 

I want to wish you Merry christmas & happy New year

 

Asha

 

 

 

 

 

 

 

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I am making snow angels for all you caregivers..

 

I am a survivor that does not need a caregiver now, only for a short time. I count my blessngs. :)

 

You all have a bushel fful of hugs from me. when its empty let me know.. I will send more.. there is an un-ending supply.

 

HUGS (((((((((((((((((((((((((((((((((oodles of them)))))))))))))))))))))))))))))))))))))))) Bonnie

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Asha,

 

Let there be no mistake, I agree with you that all spouses are not caregivers. At some point the spouse may have been a caregiver, however, I think we can all agree that most of the survivors who post here are not in the need for a full time caregiver as Bill and Ray and....you know who I mean. In no way did I want to insinuate that all spouses are caregivers and I give each survivor much, much credit or recovering to self sufficiency!!

 

Love,

 

Ann

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Ann,

 

From how I see the message board you reply or make a comment on a topic you feel you can add something or maybe learn something, or as I do, just add conversation as it applies to me in some way, form, or fashion. I put my two cent in no matter who the topic starter is when I got something to add, interject or want to know.

 

On the other hand I've been on site for so long I know about everybody, but my thoughts are, reply when you feel the need, that's what I do, I don't suppose anyone really cares one way or the other and in many cases people are looking for answers, that's what I give them.

 

That's like some Bloggers have the comments from others blocked until they approve them. I'm too dumb to see the reason but it doesn't bother me.

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