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Thread: looking for someone to talk to

  1. #21
    Hi Kcbug. I echo WM's comments almost to the letter, with a few more:

    My wife & best friend (same person), C2 incomplete nearly 20 yrs ago. Life has been challenging for both of us, and lot of it boils down to your attitudes. It could be sooo much worse! We have each other and that alone is huge. It would be far worse if we weren't together.

    I now relish the brief commute to/from work, mowing the lawn, the occasional time to wash the car...and am so thankful that I am healthy enough to do things.

    SCI's are life changers for all involved. Accept it, pray for strength, and don't be selfish until you feel like you really have to. Try to build in some time for yourself if you can. I help my wife exercise and have learned to use this as a way to exercise myself. Her (our) condition helps me see what is really important in life every day and use my time wisely.

    I lead a manufacturing team of 130 people, which runs 24 x 7. It isn't easy, but I've found a way to be very happy in life.

    Welcome to our strange world. I'm a newbie to this board too and find it helpful!

  2. #22
    Senior Member zillazangel's Avatar
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    Hi

    I think that I'm in a very similar position to you KC - I am the wife of a C4 complete quad, a mother to a five year old, run my own business, and we don't have a PCA or any housecleaners to help. The reasons for the latter are logistical mainly, although I just need to get someone to clean and be done with it, that's alot easier to find than a PCA. But on the other hand, with running my own business, recently moving to a much larger house, Christmas, etc, I am reluctant to spend money you know?

    Anyway, first things first .... anything your husband *can* but won't, MAKE HIM. It is completely unacceptable for you to have to get his drinks, do his cathing, etc when he can do it himself. I mean, you can always get a glass of something to drink just to be a nice person, but 90% of the time, he should be doing it himself. In other words, don't do more than you would do for an AB husband.

    I too have struggled with depression for over 5 years now. Try NOT to feel like there is a stigma about meds, or that you have to "resort" to them, or it's a weakness to rely on meds. Depression, while often caused by circumstances, literally alters the chemical makeup of your brain and medication treats this imbalance. But I do know how HARD things can be when you are depressed (I cycle in and out of depression) and you are caring for a disabled spouse. I have been taking antidepressants for 5 years and there is not a single thing wrong with it. In fact, I am proud of myself for taking positive steps to improve my mental health.

    So I guess my advice is to be more assertive and make him fend for himself more, which should give you more time. When you do have to care for him, try to think of it as time you spend together - try to laugh, talk, etc. Half the time I shower Chad we end up in a fit of giggles because he farts unvoluntarily, I drop the soap for the 23rd time, I squirt him in the face accidentally, etc. We try to laugh at that stuff instead of stressing out. BUT ... with that said, when I drop the soap for the 24th time sometimes I think I'm gonna lose it!! ....

    Welcome, and know that I am in a very, very similar position and that I am here to talk anytime.

    Ami
    Wife of Chad (C4/5 since 1988), mom of a great teenager

  3. #23
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    I understand your situation exactly. My husband was injured 3 years age, C5. I work as a nurse full-time. We have six children, most of them teenagers. I get down very often. There just isn't enough hours in the day to have time to myself. It sounds as though your husband does try to do things for himself. You're lucky. My husband depends on me for almost everything. I think I made a mistake in the beginning not getting outside help. Being a nurse myself, I felt that no one could care for him as well as I could, so I have always taken care of him alone. Now he would never let anyone else come in. I'm tired and burnt out beyond reason but that's just the way things are. I have no choice so I just get up every day and do what has to be done. What gets me through is a fantasy of going away ALONE even for a night and being able to take a bath, watch what I want on tv, and go to bed and sleep for eight hours straight . That dream keeps me going. I've forgotten what it's like to be able to go to bed when I like. Anyhow, just wanted to let you know I understand. Family and friends mean well, they just don't get it. People always like to tell me what I should do, what, tell him to do for himself, let the kids take care of the house, etc. Easier said than done especially for a control freak like me.

  4. #24
    You caregivers MUST take some time out for yourselves. Even God needed to rest on the 7th day! And since you are only angels on earth giving so much of yourselves to those you love you need a break too. And soon... don't keep putting it off.

    Here's what Nurse KLD wrote in another thread.

    If family members say they will not or cannot help in a situation like this, I recommend that you tell them that you cannot (and should not) be his full time caregiver, and if they are unwilling to help, then they can chip in money for a PCA. That way they are still doing their share in a way.

    You need a break. We rarely recommend that spouses take on full-time caregiving as it is so emotionally stressful, can interfere with the marital relationship, and studies have shown that your health is likely to suffer. Please talk to your husband and family about making arrangements for you to get a break...and take that time for yourself, whether it is going back to work part time, sleeping, playing tennis with an old friend or whatever.
    There was a "Caregivers Bill of Rights" posted here before but I can't find it. Maybe someone knows where it can be found.
    "Be kind, for everyone you meet is fighting a great battle." - Philo of Alexandria

  5. #25
    Caregiver's Bill of Rights

    -I have the right to take care of myself. This is not an act of selfishness. It will give me the ability to take better care of my loved one.

    -I have the right to seek help from others even though my loved one may object. I recognize the limits of my own endurance and strength.

    -I have the right to maintain facets of my own life that do not include the person I care for just as I would if he or she were healthy.I know that I do everything that I reasonably can do for this person and I have the right to do some things just for myself.

    -I have the right to get angry, be depressed, and express difficult feelings occasionally.

    -I have the right to reject any attempt by my loved one (either conscious or unconscious) to manipulate me through guilt or anger.

    -I have the right to receive considerations, affection, forgiveness, and acceptance for what I do for my loved one as I offer these attributes in return.

    -I have the right to take pride in what I am accomplishing and to applaud the courage it has taken to meet the needs of my loved one.

    -I have the right to protect my individuality and my right to make a life for myself that will sustain me in times when my loved one no longer needs my full-time help.

    -I have the right to expect and demand that as new strides are made in finding resources to aid physically and mentally impaired older persons in our country, similar strides will be made toward aiding and supporting caregivers.

    Reprinted from AARP

    (KLD)

  6. #26
    Senior Member zillazangel's Avatar
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    avatar ...

    unrelated to this post .... I love the new avatar sci-nurse!
    Wife of Chad (C4/5 since 1988), mom of a great teenager

  7. #27
    Thanks...we looked quite a while to find something that was both uni-sex and more modern than the old one (nurse with a cap)!

    (KLD)

  8. #28
    ~My husband depends on me for almost everything. I think I made a mistake in the beginning not getting outside help. Being a nurse myself, I felt that no one could care for him as well as I could, so I have always taken care of him alone. Now he would never let anyone else come in.~

    "let"... hmmm... maybe it shouldn't be an option. Some aspects of caregiving are not 'overly' personal... maybe a PCA could do that stuff.... or maybe your husband could make the effort to build a knowledge base or PCA relationship, so that you aren't the only one who knows how to take care of your husband properly. Let him teach them. Take a step back... breathe. smell the roses, take the time to sleep in that day, or if you can't then wake up and make an amazing cup of coffee or tea and read the paper, a book, it doesn't matter... Otherwise, you wo't be any good to your husband on the level that he needs you the most... wife, mother to his children, confidant, friend... you deserve it and maybe some of this responsibility needs to be placed a bit more on him. Yes, there will be a learning curve and growing pains suck, but in the long run you and he both need it. It sounds like you are in the perfect position to teach...

    I'm tired and burnt out beyond reason but that's just the way things are. I have no choice

    (MAKE IT A CHOICE, MAKE IT AN OPTION IN YOUR LIFE. THINK OF WHAT YOUR KIDS SEE. THEY SEE A MOTHER WHO IS NOT MAKING HERSELF HAPPY. A mother who works hard, so deserves happiness, too. THEY NEED TO SEE THAT. Just like they need to see you and your husband happy together, and burned out is not happy. )

    ... so I just get up every day and do what has to be done. What gets me through is a fantasy of going away ALONE even for a night and being able to take a bath, watch what I want on tv, and go to bed and sleep for eight hours straight . That dream keeps me going. I've forgotten what it's like to be able to go to bed when I like. Anyhow, just wanted to let you know I understand. Family and friends mean well, they just don't get it. People always like to tell me what I should do, what, tell him to do for himself, let the kids take care of the house, etc.

    "Easier said than done especially for a control freak like me."

    THAT SAYS IT... let go of some of the control. Nothing is going to fall apart or break... yes, it might change a bit. you never know...someone might even pick up the slack...BUT STOP... pass the buck,... ok, maybe not the whole buck... hell, pass 20 cents... you deserve it. Your kids are teenagers... just ask them... they are almost adults, they understand the need for a break, hell, make a deal with them... they do this, you give them this... etc... one night off,... two nights at a friend's house... whatever ever the bargaining chips are on you... but WHY NOT?!!! It is their father... so it's not like they don't care.

    All I'm saying is that they need you to be the best you that you can be... and if one night off a week is designated as the "mom sanity night"... THEN TAKE IT. Think of it like a diet... one day a week you can splurge on a bath or a cheap glass of champagne or... maybe just going to bed early.

    Tell your husband (for all i know you have... ) impress upon him that you're really fried... that you're hurt that no one steps up to the plate... that you took a load on that is wearing you down and you need a bit of a breather... You don't want to snap or get totally burned out... Do something while you still know that just a little bit will help...
    Do it before your family sees you break down or get so depressed that the whole family crumbles around you as you crash.

    I guess all i'm saying is that maybe you can't/won't get total relief, BUT find a halfway step and give yourself a breather to rejuvenate. Since so many things are dependant on you, then that means so many more things will fall down if you end up breaking down...


    I'm not trying to dictate to you, I just think that there might be a middle step to things vs just stepping out of the picture totally....

    Either way, I guess my point is that you deserve a break... see if there is some other option... maybe a halfway point to rejuvenation....

    Take care.
    "Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body, but rather to skid in sideways, margarita in one hand - chocolate in the other, body thoroughly used up, totally worn out and screaming WOO HOO - What a Ride!"

  9. #29
    I'm in fear that my mother, who is my primary care-giver, will feel the way KC does. I never want to put that kinda stress on anyone. so, i make it a duty that I do as much as possible for mysedlf. Afterall It's MY life. Sometimes I worry about my mom because she is such a control freak. She does a lot of my business matters, since I'm in school and rarely have enough time in the day. I still offer to do some of these matters, but being the person who likes control, she insists that she takes care of these matters. I just keep myself as organized as I can, so there is less work for her to do with me. Over time, she notices it and often say's "remember when I used to do (fill-in)?" we appreciate each other. BUT, I must admit, I don't help take care of me for her, but I do it for ME. and even though it's tuff initially, it gets easier after a few tries. One thing that motivates me is that I get mad when people dont do things they way i would normaly do it, so It forces me to attempt to do it on my own. which is a good thing I guess --> it seems to be working out in everyones favor
    "People Will Forget What You've Said, They'll Forget What You've did, but They'll Never Forget How You Made Them Feel" -Maya Angelou

  10. #30
    Hi KC, I'm 48 and a T9 complete. I had a car accident. I've never had an acc. in my life but the first one was a dusy. Welcome to CC and as I see you have had lots of responses.
    Anytime you want to talk just private topic me. I'd love it.
    Mary
    I want to Rock you Gypsy soul and together we will flow into the Mystic.
    Van Morrison

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