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#1 | |||
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Member
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What can you contribute Trekker?
The answer to that is heaps! It is often so much harder for loved ones coping with this monster than it is for the patient. I am sure that your care, wisdom, and patience will be really valued by lots of people on here - another side of it so to speak. In return, I am sure that we can be here for you when you need some support. It sounds like you have been through more than your fair share of misery with all this. It is really nice to meet you - looking forward to getting to know you better. Cheers Lyn ![]() |
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#2 | |||
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Member
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LOL Patience! The only reason I appear to have patience is I'm too gosh darn tired to react with any speed. I'm actually very impatient with "the system", drives me nuts. I'm so tired of dealing with uncaring beaurocrats, poorly trained techs, and companies that will only deal with us long enough to get paid and then we are invisible to them.
Wisdom? Most days I just simply put on foot in front of the other. The brain is barely functioning on those days ![]() Care. Ok I'll give you that one. Although part of me just wants to prove to "the powers that be" that if you do what is [U]right[U] it is actually cheaper to care for a disabled person. Hubby is stable because for the last 22 years I have worked hard and trained the people who work for us properly. No one expected DH to live this long and be in such good physical shape...e.g. in those 22 years the only skin breakdowns he has had were caused by the "care" he got while in the hospital. If he's in there for any length of time he comes home with a breakdown...and I stay with him 24/7 when he's there so I can direct his daily care....actually have a hard time getting aides to spend anymore than 15 minutes in his room. They fight me on his meds, his care, his ability to understand, what his needs are and I always have to fight for a special mattress...they always want to wait until he gets worse because he's not being supported properly or until he breaks down. They'd rather have the already overburdened nurses come in to turn him every two hours than to get the right mattress....stupid, wasteful, and most of all hard on DH. Sorry this turned into a rant but I'm having trouble getting tires for DH's wheelchair..why? because we kept the chair longer than they like and no ones knows what size tires we need...and the wheelchair company refuses to co-operate. How dare we not buy a new chair that we don't need! LOL I should start a thread...what's the stupidest thing that you've had to deal with in the system? |
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#3 | ||
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Junior Member
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Hi I'm firefly
![]() I feel that my husband has been essential to my recovery!! ![]() ![]() ![]() ![]() Your doing more than you can imagine hun!! ![]() Here is a poem I wrote for all the caretakers!! We know it is just as hard on you too!!! We are so sorry We are so sorry, to all of our family and friends We know the "Annie" has altered your life too See the distress & fear while you try to pretend We all wish there was something we could do We are so sorry to have placed this in your lap Know it's a magnitude for someone to take on Wish we could complete, these enormous gaps We're so lucky to have all of you to lean upon We are so sorry though know it is not our fault Know that this is physical, but feels so mental We do not mean to be malicious, or even insult Sorry but our brain can be a bit uncontrollable We are so sorry, know it is just as hard on you Know we have a long road ahead so hold fast We know lacking you we could not get through Together we know this will be a thing of past We are so sorry, our recovery is of such length Know a number of us are extremely depending Recognize your support, devotion & strength Vital to our recovery by the love your sending We are so sorry, but so grateful to have you all Know that life can teach us a lot about kinship We couldn't get through this without you to call Your patience, love, attention, care, friendship FireflyR7 4/3/06 Thank you to all the spouses, family & friends Who have helped take care of an "Annie" Survivor! 8) |
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#4 | |||
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Member
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Wow firefly! Thanks for taking the time to write a poem for caregivers even with all you have to deal with.
Where was your "annie"? Hubby's was in right temporal lobe but of course the bleed damaged other areas of the brain as well. Hubby is very light sensitive too. This is the first time I have heard another survivor mention the light problem. Are you still going to therapy? Your DH sounds wonderful. Tell him I said Hi. Hubby didn't co-operate with his therapists much..long story. We still have to "sneak" in his physical therapy. If we tell him we are going to do some he starts saying ow even before we start LOL. Makes people feel so bad they don't want to do the therapy. But when we sneak it in he doesn't complain at all. |
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#5 | ||
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Junior Member
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