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I am putting my self on the line, putting what I think out there. Care giving sucks.
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Care Giver
Care giver's life or no life?
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#2
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Posted 15 February 2006 - 04:52 AM
Onion,
What's wrong with you? Are you mad to someone else or to yourself? Are you a person with SCI or a care giver? Coz as you've mentioned to your thread..."CARE GIVING SUCKS!" I want to give my gripe on that.Or well maybe were different,"Me as a care giver I love my work and i love all my patient.I'm doing all my best to render all the care.Coz I really care for them.
Well give us some detail...what's wrong?
What's wrong with you? Are you mad to someone else or to yourself? Are you a person with SCI or a care giver? Coz as you've mentioned to your thread..."CARE GIVING SUCKS!" I want to give my gripe on that.Or well maybe were different,"Me as a care giver I love my work and i love all my patient.I'm doing all my best to render all the care.Coz I really care for them.
Well give us some detail...what's wrong?
This post has been edited by carolline: 15 February 2006 - 04:52 AM
Naughty Carer (SKMC)
#3 *onion*
Posted 15 February 2006 - 05:19 AM
Ouch, you are mad at me. There is no way I would be mad at you. I guess we are not on the same page.
#4
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Posted 15 February 2006 - 05:47 AM
Slowdown.... I'm not mad at you.I just mentionedback what you've said.Well if people do'nt happy anymore to one thing,all the problem will be arise and you will feel everyday it's gettin worst and worst.I know we are in different situation.Are you not happy anymore or there's a possibilty to be happy.And you're just focussing to your problem.That's why the other good things happened into your life you didn't notice it.
Ther's some couple here in this forum even their husband is with SCI their relationship still strong and happy.(Well as I've said we are in different situation and has a different way how to handle a situation like this.)As you can read on to their thread and you will get some advice and help regarding to your problem.
Sorry again...if you feel that I felt mad at you.Certainly I'm not.
Ther's some couple here in this forum even their husband is with SCI their relationship still strong and happy.(Well as I've said we are in different situation and has a different way how to handle a situation like this.)As you can read on to their thread and you will get some advice and help regarding to your problem.
Sorry again...if you feel that I felt mad at you.Certainly I'm not.
Naughty Carer (SKMC)
#5 *onion*
Posted 15 February 2006 - 05:54 AM
I drink too much wine. This is my free time...shortly to end. I just wanted to talk to someone.
Sorry I seem cruel
Sorry I seem cruel
#6
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Posted 15 February 2006 - 10:18 AM
With respect Caroline you choose to be a care giver, you get time off and holidays. Many people (most) do not choose to be a care giver but have it forced upon them. They have the job 24/7 and don't get holidays or help or support. For many of these it changes their life completely and not in a positive way. I suspect that the sample of care givers here is a self selecting one in that they are generally those that are positive about their new role. I know for a fact that my wife, who is extremely bitter about being forced to give up her career and having to take on all the extra work that I now can't help with wouldn't ever consider 'wasting' her time on an SCI forum.
Seeing it from the other side I'd definately have to agree that 'Care Giving Sucks'. Lots of people who are forced into becoming care givers through no fault of their own have to give up careers, lose the vast majority of their social lives and end up working two or three times as hard as anyone has any right to expect them to. So unless you are an unpaid 24/7 care giver trying to care full time as well as run a house (and possibly a family) on benefits payments with little or no help and support I doubt you can have any real appreciation of the difficulties encountered by many many people.
Seeing it from the other side I'd definately have to agree that 'Care Giving Sucks'. Lots of people who are forced into becoming care givers through no fault of their own have to give up careers, lose the vast majority of their social lives and end up working two or three times as hard as anyone has any right to expect them to. So unless you are an unpaid 24/7 care giver trying to care full time as well as run a house (and possibly a family) on benefits payments with little or no help and support I doubt you can have any real appreciation of the difficulties encountered by many many people.
Russ - T2complete
#7 *Guest*
Posted 15 February 2006 - 11:03 AM
GOOD REPLY THERE. YOUR TOTALLY RIGHT!!
#8
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Posted 15 February 2006 - 12:09 PM
Before I never knew what is her problem.That's why I asked her if she is an SCI person, or a care giver? And i never thought she's the wife of an SCI person.And this topic was posted earlier than her other previous thread.As she posted another topic...that'ts it..I knew what is going on to her.
Honestly...I thought she's a care giver when I read her thread.I want to tell to her to quit.Coz if you are not happy anymore to your work,what's the sense of being sticking to your job?Resign and look for another job.Coz if you are not happy and satisfied on it...how can you work well?
Me and Onion is in different situation she's on 24/7 while me I'm not.Russ is right I do'nt have any comments on that.But I have a question......
1.IF YOU ARE A CARE PROVIDER TO YOUR LOVE ONES...ARE YOU GETTIN TIRED OF IT? -coz what i read to some story is, if you love someone you will do everything.What ever situation it is,as long as your love one is happy you will feel the same at the end part of the day.You will forget the tiredness and will face another day to come.
2.OR IT DEPENDS ON TIME MANAGEMENT? SO THAT YOU WILL HAVE A TIME FOR YOURSELF.SO THAT YOU WILL TAKE A BREATH FOR A WHILE?AND IT DEPENDS ALSO TO THE PERSON W/ SCI THAT YOU CARE.IF HE/SHE IS NOT HELPING THEIRSELF FOR THEIR OWN GOOD?
3.WHAT YOU WILL DO IF YOUR SPOUSE SHOWS THAT HE/SHE NOT HAPPY ANYMORE AND FED UP TO CARE FOR YOU?
Individual has a different ways or reaction how to deal with the problems.We are only humans that can feel the tiredness to those works for the day.But I mean if it's with love and dedication specially if you're doing it to your loveone.I think you will never give up.To keep the relationship strong and stick together.Beacuse if there's no love to what your doing.Its easilly for us to feel tired and see all the problems around us.
Just asking.....I don't want to hurt someone else about my post.
Peace.....
Honestly...I thought she's a care giver when I read her thread.I want to tell to her to quit.Coz if you are not happy anymore to your work,what's the sense of being sticking to your job?Resign and look for another job.Coz if you are not happy and satisfied on it...how can you work well?
Me and Onion is in different situation she's on 24/7 while me I'm not.Russ is right I do'nt have any comments on that.But I have a question......
1.IF YOU ARE A CARE PROVIDER TO YOUR LOVE ONES...ARE YOU GETTIN TIRED OF IT? -coz what i read to some story is, if you love someone you will do everything.What ever situation it is,as long as your love one is happy you will feel the same at the end part of the day.You will forget the tiredness and will face another day to come.
2.OR IT DEPENDS ON TIME MANAGEMENT? SO THAT YOU WILL HAVE A TIME FOR YOURSELF.SO THAT YOU WILL TAKE A BREATH FOR A WHILE?AND IT DEPENDS ALSO TO THE PERSON W/ SCI THAT YOU CARE.IF HE/SHE IS NOT HELPING THEIRSELF FOR THEIR OWN GOOD?
3.WHAT YOU WILL DO IF YOUR SPOUSE SHOWS THAT HE/SHE NOT HAPPY ANYMORE AND FED UP TO CARE FOR YOU?
Individual has a different ways or reaction how to deal with the problems.We are only humans that can feel the tiredness to those works for the day.But I mean if it's with love and dedication specially if you're doing it to your loveone.I think you will never give up.To keep the relationship strong and stick together.Beacuse if there's no love to what your doing.Its easilly for us to feel tired and see all the problems around us.
Just asking.....I don't want to hurt someone else about my post.
Peace.....
Naughty Carer (SKMC)
#9
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Posted 15 February 2006 - 04:00 PM
Ok I'm going to try this again! I just wrote this novel of a response and it vanished! 
Yes....SCI SUCKS! But I don't believe that anyone here woke up one morning and said to themselves, "today I am going to get into an accident and totally screw with the rest of my family" (well I hope not)
Don's accident was three years ago February 8th. There's not many days that goes by that I don't think about the what if's....I thought that we had life by the ass. I think about the days before and the morning of as if it was yesterday...
February 7th 2003. We had friends over for dinner and drinks..It was getting late into the evening and we both had to be up early. Don to go to his race, I had to get to a hockey game a few hours from our home. We went to bed and Don started rubbing my back (you know what I mean
. I said, "I need to get some sleep." and with a quick peck on the lips, that was the last words I said and rolled over and was out. That is the last time I would have ever made love to the man I married....as I knew it..
In the morning he was up before me, I was in the shower and through the house
he yelled "have a good game", and I said 'you too". I'm sure we said I love you, but it probably was a quick and not heart felt.
At the arena I received the call it was a friend of mine she said, "Kristi there's been an accident" I thought for sure it was my son Chaz. It was his first year racing snowmobiles and like his dad he was FAST WILD AND CRAZY! I asked, is it Chaz? she said, "no Don" For some reason a sigh of relief went through me, probably because Don broke his back once before and came out fine( I always said he had a 4 leaf clover up his ass)
She then said, "it's bad Kristi you need to come." and with that I did. I vaguely remember asking a friend to get my daughter home from the game, I remember freaking out because I couldn't find my keys in my bag. (the endless pit) I drove to the hospital but if someone asked me how I got there I don't think I could tell them. I saw our friends in the lobby and the nurse brought me to the E.R. He was laying there. so still. pail, he all held down by straps and gadgets. His eyes caught mine and he whispered "I screwed up".
I knew I had to be strong. Somehow I managed to hold it together and make the calls I needed to make, get the papers I needed to get. The road was long but I was determined to be the devoted wife.
The next few days were hell to say the least. Don came through his surgery well and of course the doctors don't give you the words you want to hear but I had hope. Don received the best care and rehab. The counselors even prepared him to some extent of how to deal wife his new life.
I the Strong one put on the happy face and made sure that the rest of our lives where as "NORMAL" as possible. I come with some health background so I figured I could do it all by myself.......and I tried.
I'll never forget the first time Don and I tried to make love. I cried. I cried so hard I couldn't stop. I didn't mean to. I didn't want him to see my weakness I wanted him to think I was ok but I was and am are to this day so NOT ok.
When Don returned home and lilfe as we now were getting to know it became routine I became everything but a wife.
Don was and is so focused on getting any recovery he can. (and should)
I just some how lost myself. and now three years later are figuring out I too need help. I never gave my self a chance to grieve. I get mad but I don't know what I'm mad at.
Don and I had martial problems prior to his accident that we were kind of dealing with, but when the accident happened we swept them under the rug....
Guess what? they're back!!!
My rambling on is therapy in itself. I never cried or bitched about how I was feeling...How this effected me. Beside the kids, man the kids! Chaz now 16 got to become the man of the house...and help me with things I always took for grated to get done. (damn light switches in the garage) leaks under the sink....
I finally told Don three years into it I need his help..I want Don back..
In a nother forum someone speaks of wedding vows for better or worse sickness or in health....I wonder sometimes what would have come of us? Was this accident some sign? It certainly has changed our perspectives. I never knew I was as strong as I am or as weak as I am.
It's ok to say this sucks........
What's not ok is to give up.
To enjoy the future you can't live in the past.
Yes....SCI SUCKS! But I don't believe that anyone here woke up one morning and said to themselves, "today I am going to get into an accident and totally screw with the rest of my family" (well I hope not)
Don's accident was three years ago February 8th. There's not many days that goes by that I don't think about the what if's....I thought that we had life by the ass. I think about the days before and the morning of as if it was yesterday...
February 7th 2003. We had friends over for dinner and drinks..It was getting late into the evening and we both had to be up early. Don to go to his race, I had to get to a hockey game a few hours from our home. We went to bed and Don started rubbing my back (you know what I mean
. I said, "I need to get some sleep." and with a quick peck on the lips, that was the last words I said and rolled over and was out. That is the last time I would have ever made love to the man I married....as I knew it..In the morning he was up before me, I was in the shower and through the house
he yelled "have a good game", and I said 'you too". I'm sure we said I love you, but it probably was a quick and not heart felt.
At the arena I received the call it was a friend of mine she said, "Kristi there's been an accident" I thought for sure it was my son Chaz. It was his first year racing snowmobiles and like his dad he was FAST WILD AND CRAZY! I asked, is it Chaz? she said, "no Don" For some reason a sigh of relief went through me, probably because Don broke his back once before and came out fine( I always said he had a 4 leaf clover up his ass)
She then said, "it's bad Kristi you need to come." and with that I did. I vaguely remember asking a friend to get my daughter home from the game, I remember freaking out because I couldn't find my keys in my bag. (the endless pit) I drove to the hospital but if someone asked me how I got there I don't think I could tell them. I saw our friends in the lobby and the nurse brought me to the E.R. He was laying there. so still. pail, he all held down by straps and gadgets. His eyes caught mine and he whispered "I screwed up".
I knew I had to be strong. Somehow I managed to hold it together and make the calls I needed to make, get the papers I needed to get. The road was long but I was determined to be the devoted wife.
The next few days were hell to say the least. Don came through his surgery well and of course the doctors don't give you the words you want to hear but I had hope. Don received the best care and rehab. The counselors even prepared him to some extent of how to deal wife his new life.
I the Strong one put on the happy face and made sure that the rest of our lives where as "NORMAL" as possible. I come with some health background so I figured I could do it all by myself.......and I tried.
I'll never forget the first time Don and I tried to make love. I cried. I cried so hard I couldn't stop. I didn't mean to. I didn't want him to see my weakness I wanted him to think I was ok but I was and am are to this day so NOT ok.
When Don returned home and lilfe as we now were getting to know it became routine I became everything but a wife.
Don was and is so focused on getting any recovery he can. (and should)
I just some how lost myself. and now three years later are figuring out I too need help. I never gave my self a chance to grieve. I get mad but I don't know what I'm mad at.
Don and I had martial problems prior to his accident that we were kind of dealing with, but when the accident happened we swept them under the rug....
Guess what? they're back!!!
My rambling on is therapy in itself. I never cried or bitched about how I was feeling...How this effected me. Beside the kids, man the kids! Chaz now 16 got to become the man of the house...and help me with things I always took for grated to get done. (damn light switches in the garage) leaks under the sink....
I finally told Don three years into it I need his help..I want Don back..
In a nother forum someone speaks of wedding vows for better or worse sickness or in health....I wonder sometimes what would have come of us? Was this accident some sign? It certainly has changed our perspectives. I never knew I was as strong as I am or as weak as I am.
It's ok to say this sucks........
What's not ok is to give up.
To enjoy the future you can't live in the past.
#10 *onion*
Posted 21 February 2006 - 04:15 AM
Hi Caroline, Russ1, and Knovack
Tonight I read the rest of the replies given to this topic. After Caroline, I just gave up, thinking I'm bad, no good, told Joed "guilty" but it was not Joed that made me feel that way. Joed connected to me very kindly. And lo and behold here you are, the people I need to talk to. Do any of you suffer from sleep depredation. I'm here taking my free time, its just about 11 pm. I need to go to bed and sleep. And I do. As soon as I fall asleep, the need disturbs: kathleen, kathleen, please, I'm sorry, I need to pee. Ok move on try to sleep, kathleen, kathleen, I don't want to do this, but please move my arm. It's a dead arm and it needs to be moved. But believe me this lack of sleep has made me a mean crazy person. I get up sobbing, cannot stop crying, curse him out, your a bastard, your mean, your cruel. I cannot give the full attention I need to give you during the day, if I cannot sleep at night. I do not do this every night. But once a week it gets me. And when I do go crazy, I'm very sorry and apologetic some hours later. Any input?
Tonight I read the rest of the replies given to this topic. After Caroline, I just gave up, thinking I'm bad, no good, told Joed "guilty" but it was not Joed that made me feel that way. Joed connected to me very kindly. And lo and behold here you are, the people I need to talk to. Do any of you suffer from sleep depredation. I'm here taking my free time, its just about 11 pm. I need to go to bed and sleep. And I do. As soon as I fall asleep, the need disturbs: kathleen, kathleen, please, I'm sorry, I need to pee. Ok move on try to sleep, kathleen, kathleen, I don't want to do this, but please move my arm. It's a dead arm and it needs to be moved. But believe me this lack of sleep has made me a mean crazy person. I get up sobbing, cannot stop crying, curse him out, your a bastard, your mean, your cruel. I cannot give the full attention I need to give you during the day, if I cannot sleep at night. I do not do this every night. But once a week it gets me. And when I do go crazy, I'm very sorry and apologetic some hours later. Any input?
#11
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Posted 21 February 2006 - 05:35 AM
Hi Onion... 
Human nature being what it is, I think I can safely say that not everyone is cut out to be a caregiver. In some respects, I can compare that to home schooling. I would love to be able to home school my son, and I'm a fairly bright person so I believe I have the knowledge to do it....but a teacher I am not! I would probably do better home schooling someone outside of my immediate family.
Love for someone and a desire to do for that person doesn't always translate into skill. I'm not saying you're not cut out for caregiving, but everyone has different tolerance levels and needs of their own that have to come into play.
I can hear your frustration and guilt, onion. Those are honest and valid feelings. The way you feel is making you feel badly about yourself, because I'm guessing that you'd like to find a way to cope a little better, because of the love you have for your partner.
I would suggest that you search in your community for support groups or respite care...something that might give you some perspective and time for yourself. There's no shame in saying that, for now, it's just too much. And there's certainly no shame in asking for and receiving help. You have so much on you...as do all the caregivers here...you are all nothing short of amazing.
Blessings to you~
Human nature being what it is, I think I can safely say that not everyone is cut out to be a caregiver. In some respects, I can compare that to home schooling. I would love to be able to home school my son, and I'm a fairly bright person so I believe I have the knowledge to do it....but a teacher I am not! I would probably do better home schooling someone outside of my immediate family.
Love for someone and a desire to do for that person doesn't always translate into skill. I'm not saying you're not cut out for caregiving, but everyone has different tolerance levels and needs of their own that have to come into play.
I can hear your frustration and guilt, onion. Those are honest and valid feelings. The way you feel is making you feel badly about yourself, because I'm guessing that you'd like to find a way to cope a little better, because of the love you have for your partner.
I would suggest that you search in your community for support groups or respite care...something that might give you some perspective and time for yourself. There's no shame in saying that, for now, it's just too much. And there's certainly no shame in asking for and receiving help. You have so much on you...as do all the caregivers here...you are all nothing short of amazing.
Blessings to you~
* * * * * * * * *
Female. Incomplete para following a cord stroke in '03. Spina-bifida, severe scoliosis. 18 surgeries total...five spine-related: Three fusions w/hardware, two tethered cord releases.
Female. Incomplete para following a cord stroke in '03. Spina-bifida, severe scoliosis. 18 surgeries total...five spine-related: Three fusions w/hardware, two tethered cord releases.
#12 *onion*
Posted 23 February 2006 - 03:34 AM
Hi Joed,
I read your reply on Tuesday, and Tuesday I was teary eyed all day. There is something about your compassion and understanding that just makes me feel bad. That, of course, is a moxymoron. So be it. My son came Tuesday and stayed until today. And today I took a walk and left the responsibility to him. And I feel good. In the last four months in our lives, there has been an eight hour operation, a stay in ICU, a crisis of lack of oxygen, a rehab that sent him home in need of total assist, the sale of our business, the sale of our home, the move to a small apartment, which I don't like. My guy's my best friend who could soothe and comfort me when I rant and rage. I don't want to feel guilty when I do it. Things are different now, and he's hurt when I do it. But I need my friend back.
I read your reply on Tuesday, and Tuesday I was teary eyed all day. There is something about your compassion and understanding that just makes me feel bad. That, of course, is a moxymoron. So be it. My son came Tuesday and stayed until today. And today I took a walk and left the responsibility to him. And I feel good. In the last four months in our lives, there has been an eight hour operation, a stay in ICU, a crisis of lack of oxygen, a rehab that sent him home in need of total assist, the sale of our business, the sale of our home, the move to a small apartment, which I don't like. My guy's my best friend who could soothe and comfort me when I rant and rage. I don't want to feel guilty when I do it. Things are different now, and he's hurt when I do it. But I need my friend back.
#13
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Posted 23 February 2006 - 05:30 AM
onion...
Everything you've described that's happened in your life recently are major, major life events. It's no wonder you're feeling overwhelmed and frustrated!
I'm glad to hear that your kids are helping when they can...a testament to your parenting and their love for their Dad. And good on you for taking that walk instead of getting the oil changed in the car (mentioned in another post of yours). Do it again...and as often as you can. Too often, I think we treat our vehicles (and other high-maintenance contraptions) better than ourselves!
Sometimes it does have to be about you...and that's okay. The most important thing you can do for your husband is to take care of yourself. Resist the urge to fill up the occasional free time with even more tasks to do. In a normal life, a walk in the park would be indulging in leisure...but for you and other caregivers, it's critical. It's important to remember that difference.
Thank you for your kind words to me. Even though I made you 'feel bad'...I think I know what you mean. I'll take that as a compliment. (?)
Everything you've described that's happened in your life recently are major, major life events. It's no wonder you're feeling overwhelmed and frustrated!
I'm glad to hear that your kids are helping when they can...a testament to your parenting and their love for their Dad. And good on you for taking that walk instead of getting the oil changed in the car (mentioned in another post of yours). Do it again...and as often as you can. Too often, I think we treat our vehicles (and other high-maintenance contraptions) better than ourselves!
Sometimes it does have to be about you...and that's okay. The most important thing you can do for your husband is to take care of yourself. Resist the urge to fill up the occasional free time with even more tasks to do. In a normal life, a walk in the park would be indulging in leisure...but for you and other caregivers, it's critical. It's important to remember that difference.
Thank you for your kind words to me. Even though I made you 'feel bad'...I think I know what you mean. I'll take that as a compliment. (?)
* * * * * * * * *
Female. Incomplete para following a cord stroke in '03. Spina-bifida, severe scoliosis. 18 surgeries total...five spine-related: Three fusions w/hardware, two tethered cord releases.
Female. Incomplete para following a cord stroke in '03. Spina-bifida, severe scoliosis. 18 surgeries total...five spine-related: Three fusions w/hardware, two tethered cord releases.
#14 *Gary*
Posted 23 February 2006 - 10:08 AM
Quote
I know for a fact that my wife, who is extremely bitter about being forced to give up her career and having to take on all the extra work that I now can't help with wouldn't ever consider 'wasting' her time on an SCI forum.
Russ - I could not agree more with your posting. My 1st wife actually left me the week before I was involved in my crippling train crash. However, a few years ago I met my partner Suzy and your sentiments above, are just like hers. We had a good relationship until I was involved in a car crash on New Year's Day which crippled my nephew (previous postings tell the story). I suffered 2 broken legs and a badly broken arm, together with other life threatening injuries. The end result - Suzy had to "go away" to nurse her Mum and I was left in the care of my parents/siblings. Now out of plaster, the outcome is much different.
Suzy is still at her Mum's and I have been left more incapacitated than ever before. End result - relationship flounders. I dont think anyone can fully understand how the 24x7 caregiver feels. My friend's Mum is a 24x7 carer for her hubby who has alzheimers and she should get a medal - as you say, no life, no career, no nothing - just caring.
My partners are gobsmacked that Suzy has gone - yet part of me cannot blame her. WHilst before the crash I was semi-mobile with sticks - I have now gone to being completely dependant on someone. My arm has been so badly broken that it cannot bear my weight when transferring to my chair. So life for us would be very different from previously. I think Suzy just could not take the added pressure.
Anyway, that is my 2p worth. Carers should get more recognition - especially quad carers.
Gary
#15 *Guest*
Posted 23 February 2006 - 02:33 PM
Well, i have just left my partner in Bed wanting to die. I care for him from when i get home from work to when i go back next morning. I have no life of my own anymore and I am expected to cope with the whole situation. I am tired of the constant mood swings and memory loss. 
We people that care for our partners have died inside ourselves when the accident happened, supported through the recovery process and what do we get for it, nothin g but grief, so the next time any of you guys with SCI have a go at your partner, remember what they are going through themselves.
We people that care for our partners have died inside ourselves when the accident happened, supported through the recovery process and what do we get for it, nothin g but grief, so the next time any of you guys with SCI have a go at your partner, remember what they are going through themselves.
#16 *iskwesis*
Posted 23 February 2006 - 07:02 PM
Wow, some really great communication and venting going on here. I think everyone should feel welcome to express whatever they are feeling (ei, it is the purpose of the forum). Onion, your latest post asked about sleep deprivation...my 24yr old daughter is the caregiver to her 24 yr old boyfriend (c-6 injury level) super guy! She has it! (Sleep issues like you.) I wrote about it, in a post about a month ago.
They're young, so they like to stay up late anyway, but she loves the few hours alone after she has put him to bed: to read or do whatever for herself. The first year I was really concerned and pressed her badly to see a doctor or counselor, to get on 'anti-depressants' or something. (I am just a concerned mother.) She finally saw her doctor, they have tried a few things, not much has changed.
I've learned not to worry as much. This is their life and they are still adapting and this is what is working for them right now. I would suggets for you and everyone to keep talking and reading (listening), we all can learn from eachother, not to mention the support we feel.
-iskwesis
#17 *onion*
Posted 24 February 2006 - 03:07 AM
Hello, Caroline, Russ, Knovack, Joed (most definitely a compliment), Gary, and Iskwesis, and some guests,
I've read, reread, and read again all of your responses. And what I've learned from you is: Besides myself, the whole world isn't going to beat down on me because I feel care giving sucks. That some people cannot handle the responsibility of care giving, and that is OK. That it really, really, does not suck all the time. That my guy is still my guy and although he is not totally there for me now, he knows iam totally there for him, even though i rant and rave about it. That i need to take some time for myself, and not feel guilty about it. (But you guys have to give me some advice on how to do this when I'm the only one there.) And that we are all in the same life boat.
(one PS Caroline, you really were on target on some things you said)
I've read, reread, and read again all of your responses. And what I've learned from you is: Besides myself, the whole world isn't going to beat down on me because I feel care giving sucks. That some people cannot handle the responsibility of care giving, and that is OK. That it really, really, does not suck all the time. That my guy is still my guy and although he is not totally there for me now, he knows iam totally there for him, even though i rant and rave about it. That i need to take some time for myself, and not feel guilty about it. (But you guys have to give me some advice on how to do this when I'm the only one there.) And that we are all in the same life boat.
(one PS Caroline, you really were on target on some things you said)
#18 *gARY*
Posted 24 February 2006 - 08:23 AM
Onion
I agree. Caregiving sucks. It is very hard. However, if I had the answers on how to make it easy or how to create "time" I would do it. I know from personal experience that social services, etc, do not have the resources in the UK to give the caregiver "time out."
Anyway, such is this topic it could run and run.
I agree. Caregiving sucks. It is very hard. However, if I had the answers on how to make it easy or how to create "time" I would do it. I know from personal experience that social services, etc, do not have the resources in the UK to give the caregiver "time out."
Anyway, such is this topic it could run and run.
#19
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Posted 24 February 2006 - 06:07 PM
My husband is still in rehab but he'll be coming home soon. And I'll be his care giver. He's a C6 quad. We're both young (23 &24) and this whole situation is proving to be a lot to handle. I worry that we won't be able to and about what will happen then. My husband is wonderful and I love him so much but I don't have children so I've never taken care of anyone like this before. He's very independent - but so am I. My work keeps me out of the house 11 hours on a good day. I'm scared something will happen while I'm gone and no one will be around to help him. How do you spouses handle these feelings and the guilt of not being able to be there 24/7?
#20
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Posted 25 February 2006 - 12:49 AM
Reading these post makes me feel sad sad sad...... 
I am so lucky to be in the position where my guy doesnt need any caregiving but my heart goes out to those of you who do. All the advice I can really give is to remember yourselves. You have a life too and try to not feel too guilty if you lose the plot every so often and need time out or you cant handle it at all. Like Joed said, not everyone is cut out to be a caregiver.
I am so lucky to be in the position where my guy doesnt need any caregiving but my heart goes out to those of you who do. All the advice I can really give is to remember yourselves. You have a life too and try to not feel too guilty if you lose the plot every so often and need time out or you cant handle it at all. Like Joed said, not everyone is cut out to be a caregiver.
#21
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Posted 25 February 2006 - 02:05 AM
Onion, I want to give you a big hug and say thanks for being honest about the situation. Caregiving does suck....and when you have a bad day, you should be able to come onto this forum and get support. The thing about being a caregiver is that we have to support each other. Although, I may not agree with some things that you (or any other caregiver) may say, I will still give you a big hug...because, no one understands like another caregiver!
I have wonderful moments with my husband, and I have those moments when I want to curl up and cry. The hard thing about being a caregiver it that if you are honest about the bad moments, people think you are a bad person. I am a wonderful wife. I love my husband more than anything in the world...but, there are hard moments. If someone were to say that caregiving is easy, they would be lying.
I have wonderful moments with my husband, and I have those moments when I want to curl up and cry. The hard thing about being a caregiver it that if you are honest about the bad moments, people think you are a bad person. I am a wonderful wife. I love my husband more than anything in the world...but, there are hard moments. If someone were to say that caregiving is easy, they would be lying.
#22
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Posted 25 February 2006 - 05:37 AM
I've just read all these great posts and it's been very very helpful! I've been feeling many of the same things ane wondering what the heck is going on in my head. It's good to hear others have the same feelings.
I've also just recently moved to a new state and started a new job (this week!) - I was initially feeling apprehensive and guilty about not being available 24/7 for my partner as I have been, but am sooo happy and psyched about just getting out and being back in my element!! (labor& delivery nursing). And this may seem SO obvious, but the things people have mentioned re: importance of caregivers taking time for themselves, in even just small ways, have been very helpful. A small kick in the pants.
Also, I feel that my partner has become somewhat complacent in knowing that I'm there to pick up the pieces when he doesn't think ahead to schedule aides etc., b/c he knows I'm there. He has a habit of calling people last-minute and expecting them to drop everything and show up. So maybe with me not being available all the time, it will make him think/ plan a little better....?
I've also just recently moved to a new state and started a new job (this week!) - I was initially feeling apprehensive and guilty about not being available 24/7 for my partner as I have been, but am sooo happy and psyched about just getting out and being back in my element!! (labor& delivery nursing). And this may seem SO obvious, but the things people have mentioned re: importance of caregivers taking time for themselves, in even just small ways, have been very helpful. A small kick in the pants.
Also, I feel that my partner has become somewhat complacent in knowing that I'm there to pick up the pieces when he doesn't think ahead to schedule aides etc., b/c he knows I'm there. He has a habit of calling people last-minute and expecting them to drop everything and show up. So maybe with me not being available all the time, it will make him think/ plan a little better....?
#23
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Posted 25 February 2006 - 04:22 PM
Going back to work has been the most wonderful for thing for my husband and I. He is so much more independent now and I feel as if I'm more than just a wife....I'm beginning to remember who I am again.
#24 *Guest_louise*
Posted 13 March 2006 - 12:42 PM
hi
i am my husbands carer and have only been looking after him since august and im really exhausted and run the house and look after our 4 small children with no help,nevertheless i have asked for more help from services in our area and been refused .
no matter how bad things got i would look after him no matter what.
i do everything for my husband and love him dearly and im lucky if i sit down for 5 hours in a 24 hour period thats including my sleep.
we are now on benefits and i struggle everyday but ill live to tell another tale.
I was able to do everything i wanted now i cant but i dont mind he is all that matters.i have no social life wotsoever and if i could i would turn back time and never had gone on that stupid holiday i booked for us all then maybe he would be ok. we have lost something we had but i know deep down i love him and he loves me and thats all that counts .and i must say caring does suck but hey so does life but at least i still have him it could have been so much worse my children could have been left without a father and i could have been left without a husband and i know i couldnt have coped with that
i am my husbands carer and have only been looking after him since august and im really exhausted and run the house and look after our 4 small children with no help,nevertheless i have asked for more help from services in our area and been refused .
no matter how bad things got i would look after him no matter what.
i do everything for my husband and love him dearly and im lucky if i sit down for 5 hours in a 24 hour period thats including my sleep.
we are now on benefits and i struggle everyday but ill live to tell another tale.
I was able to do everything i wanted now i cant but i dont mind he is all that matters.i have no social life wotsoever and if i could i would turn back time and never had gone on that stupid holiday i booked for us all then maybe he would be ok. we have lost something we had but i know deep down i love him and he loves me and thats all that counts .and i must say caring does suck but hey so does life but at least i still have him it could have been so much worse my children could have been left without a father and i could have been left without a husband and i know i couldnt have coped with that
#25 *Guest*
Posted 15 March 2006 - 06:22 AM
hillarymcarter, on Feb 25 2006, 04:22 PM, said:
Going back to work has been the most wonderful for thing for my husband and I. He is so much more independent now and I feel as if I'm more than just a wife....I'm beginning to remember who I am again.
aYes! Thank you for sharing these thoughts....I feel the same, remembering who I am....!! and realizing that my partner can (and needs to!) function on his own as much as he is able. And am so much enjoying my new job!! remembering why I got my education, why I enjoy being productive and helping other people etc!! it's way cool.
A new slant on this for me - switching to working nights, and he not having an aide to help with pm stuff. So I called in at work, since I was not OK with that situation....
ack....
#26
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Posted 30 March 2006 - 07:20 AM
Yeah, caregiving sucks, but you do what you gotta do! Family comes 1st in my books! Been my brother's caregiver since 1982, wouldn't have it any other way!!!!!!!!!
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