[GettingTired]

Hi. I just found this website today, and thought maybe I could find a little bit of comfort here. I'll be 44 this month.
My husband, who just turned 50 on 11/07, was injured in a vehicle accident five years ago, in March of 2003. As a result, he's a C2 Quadriplegic, (tetraplegia, as it's commonly referred to these days), and vent dependent. He was in ICU for six weeks, and in rehab for six months. We had only been married for 3 years in December before the accident in March.
We came home together in Sept of 03, and since that time, even with what's supposed to be full time nursing service, I have provided his cares, technically, from 3pm to 11pm, 7 days a week. I cover every shift that any Nurse or Aide calls in for, or simply isn't scheduled for, due to there being a lack of people willing to do home care in our area. I get very few nights of full sleep. Even if there is a nurse & aide on duty, I'm woken up for any problems with the him, the vent, the air bed, the feeding pump, etc. I'm not complaining. Just stating the facts of life as they are. I keep track of all the supplies that are needed, and do the ordering and storing after delivery. I keep track of all meds, ordering, set up, etc. In order to keep risk of infection at a minimum, I do the monthly trache change and foley change. And knock on wood, it seems to have worked. No infection of any kind, including UTI's in the five years since he's been home. In addition to caring for my husband, there is also the normal household chores. Cooking, laundry, dishes, house mainenance, etc and feeding him. I rarely let anyone else feed him due to the choking risk. He has a set routine, and has ROM for an hour and a half everyday before being dressed and being transferred to his recliner in the living room till 11pm at night. I've done everything humanly possible to make his quality of life the best it can possibly be. He has every new release movie there is, most new release books on CD, and recently got a computer that he's able to control, with a quad mouse and dragon speech. He's utterly thrilled at his new found independence, and having him happy makes me happy, BUT....he's gotten to the point of completely ignoring me due to the computer. I can stand right beside him, talking, or asking him something, and he doesn't even acknowledge my existence. The computer is literally in front of him, for the entire time he's not in bed, except for his meal, which he's started eating less of and hurrying through to get to the computer.
He has family close by, who have been here to visit him, MAYBE five times in the whole five hears since the accident. None of them offer to help me in any way. Not a single meal. Not shoveling off the sidewalk or driveway in the middle of a MN winter. Nothing. They don't stop in just to say hello to him, or visit. Again, nothing. Since he got the computer though, he spends quite a bit of time emailing them. The same people who don't do anything to help our situation, let alone make time to BE with him, yet he ignores me completely to spend his time talking to them on the computer.
Maybe I'm simply feeling left out or jealous or both. I really don't know. I just know that I'm tired all the time, and have no quality time with our 13 year old daughter, who now he barely says hello to when she gets home from school. There's a lot more to this whole story, and maybe I'm not on the right site to deal with what I'm going through. Maybe I just need a blog or to write it all down and get it out. I know I'm tired, and lonely and crying all the time. And wondering how my life ever got to this point....

[kewlcatkez]

GettingTired, on Mar 5 2008, 06:46 PM, said:

Hi. I just found this website today, and thought maybe I could find a little bit of comfort here. I'll be 44 this month.
My husband, who just turned 50 on 11/07, was injured in a vehicle accident five years ago, in March of 2003. As a result, he's a C2 Quadriplegic, (tetraplegia, as it's commonly referred to these days), and vent dependent. He was in ICU for six weeks, and in rehab for six months. We had only been married for 3 years in December before the accident in March.
We came home together in Sept of 03, and since that time, even with what's supposed to be full time nursing service, I have provided his cares, technically, from 3pm to 11pm, 7 days a week. I cover every shift that any Nurse or Aide calls in for, or simply isn't scheduled for, due to there being a lack of people willing to do home care in our area. I get very few nights of full sleep. Even if there is a nurse & aide on duty, I'm woken up for any problems with the him, the vent, the air bed, the feeding pump, etc. I'm not complaining. Just stating the facts of life as they are. I keep track of all the supplies that are needed, and do the ordering and storing after delivery. I keep track of all meds, ordering, set up, etc. In order to keep risk of infection at a minimum, I do the monthly trache change and foley change. And knock on wood, it seems to have worked. No infection of any kind, including UTI's in the five years since he's been home. In addition to caring for my husband, there is also the normal household chores. Cooking, laundry, dishes, house mainenance, etc and feeding him. I rarely let anyone else feed him due to the choking risk. He has a set routine, and has ROM for an hour and a half everyday before being dressed and being transferred to his recliner in the living room till 11pm at night. I've done everything humanly possible to make his quality of life the best it can possibly be. He has every new release movie there is, most new release books on CD, and recently got a computer that he's able to control, with a quad mouse and dragon speech. He's utterly thrilled at his new found independence, and having him happy makes me happy, BUT....he's gotten to the point of completely ignoring me due to the computer. I can stand right beside him, talking, or asking him something, and he doesn't even acknowledge my existence. The computer is literally in front of him, for the entire time he's not in bed, except for his meal, which he's started eating less of and hurrying through to get to the computer.
He has family close by, who have been here to visit him, MAYBE five times in the whole five hears since the accident. None of them offer to help me in any way. Not a single meal. Not shoveling off the sidewalk or driveway in the middle of a MN winter. Nothing. They don't stop in just to say hello to him, or visit. Again, nothing. Since he got the computer though, he spends quite a bit of time emailing them. The same people who don't do anything to help our situation, let alone make time to BE with him, yet he ignores me completely to spend his time talking to them on the computer.
Maybe I'm simply feeling left out or jealous or both. I really don't know. I just know that I'm tired all the time, and have no quality time with our 13 year old daughter, who now he barely says hello to when she gets home from school. There's a lot more to this whole story, and maybe I'm not on the right site to deal with what I'm going through. Maybe I just need a blog or to write it all down and get it out. I know I'm tired, and lonely and crying all the time. And wondering how my life ever got to this point....

Hello Gettingtired,

Welcome to the forums and good to meet you so to speak, Sorry that it has to be under these circumstances, but welcome all the same.

I saw this message a wee while ago, but I have been having issues accessing the threads today ( I have emailed Apparelyzed/Simon so hopefully it will be sorted soon).

I am in a different situation to your husband, in that although I am paralysed, its at a lower level.
Just for introduction purposes, I am paralysed (chair user for around about 3 years) and have severe dislocating EDS ( means I dislocated multiple joints, multiple times daily - which although were present before, were not every day..now they are as a result of hormonal influence, an accident and the fact that it usually progresses due to the trauma of the proceeding dislocations etc etc.- has gotten worse over last few years). I also have the other stuff which goes with all of this ( pain, POTS, Autonomic dysfunction etc). I am a Mother to 2 beautiful children (5 and under) and wife to some bloke, lol...I am also a qualified RN who is no longer working in a clinical setting. I hope that it is ok for me to reply with a few thoughts on your post. I hope they are of some use,

First off,I didn't know whether to reply or not really, since I think that you perhaps need to hear from other Carers/Spouses. However, in my role as an RN ( in a former life! ) I have to say that I saw people who were tired and at the end of their 'tether' so to speak whilst caring for their spouses/loved ones, etc. Every situation was different. Some would be caring out of love and others out of dedication, still others out of necessity and others because they were the only person the person with the disability would trust/allow too.

I am not about to judge and say what, why etc category which you and your hubby fit into. What I will say though is that you are obviously totally worn out and when that happens it often means that everything seems more daunting and overwhelming than it otherwise may do - and lets face it, looking after someone 24/7 IS daunting, so you are bound to feel the way you do right now. I have only been a carer Career wise as an RN, but I do not sleep (due to pain and dislocations) and so I can relate to the sleep deprivation side - the having to 'get up' and sort out looking after others (my lil kids).. I mean, thats why Sleep deprivation was/is a form of barbaric Torture!


Then there is the fact that your hubby's family occupy so much of his time and attention. That must feel very difficult when you are the one attending to his ADLs (activities of Daily Living) and ensuring that his needs are met. Like I said I don't know you nor your situation, but no one can ever be exhaustable/infallable or it is disasterous if anything ever happened to you. You have to care for you as well as him and of course your daughter. By this, I mean that you *need* to arrange for some respite carers or perhaps there is something in your area to help with this. I can see this from both sides in that obviously he trusts you wholly and yet you need to be able to have a bit of "me" time once in a while. Who knows perhaps his family relationships will lead to them coming over more and perhaps learning how to help with his vent etc. As for having the RNs there and them waking you to sort it out, I would be asking questions of their qualifications! I mean, do they have appropriate training? I am sure you have ensured they have, but they are obviously not very confident so perhaps the Agency/state whoever is responsible for sending them ( I am in the UK) should send them on a refresher course/update?

Like I said I am unaware of specifics, but from what you write the way in which hubby is saying little to you and your daughter, well this sounds a bit depressive. Its easy to say these things, but thats how it sounds, reading it. I was wondering if, now that Hubby is on the computer so much, could he now take over the ordering responsibility for his supplies? Perhaps his renewed relationship with his family will also help with this? I know that you feel that they have dropped him metaphorically in the past, but perhaps life is too short and this may be eating away at hubby and his family? I don;t know... I do know that the computer is liberating to me so I can imagine that to your hubby this will be compounded due to his injury level. It is easy to get engrossed much like you do with a book. Perhpas it would be good to discuss this with him? to tell him that you feel shut out and perhaps have a night or so a week where you spend quality time together ( as far as possible)...

You end by saying that you don't know if this is the right site for your situation - it has got many active posters who are spouses and long term ones too, so if anything, 'walking' in similar shoes' may help, and for people to listen and let you talk. You seem so unhappy, I know that you feel that your husband is shutting you out, and that must hurt since you are assisting him with his care and them - nothing...Perhaps you should speak with a counsellor? alone or together? perhaps you need to speak to hubby and tell him how you feel..Obviously its easier said than done...but if you are so unhappy, perhaps this is the way to go. Men being men ( no offense guys) perhaps he isn't aware of the extent of the situation, or he is pretending he isn't, or maybe even he is getting lost at the computer and not realising the time? But you both need to talk like adults and you need some time to sleep..

I hope that those in your situation will reply and be of more help.use than me. I hope this helped even if only a bit,

Take care,

K

[nomis]

Hi GettingTired

I’m very taken by your story. Your family finds itself in a somewhat extreme situation and I have a mix of concern and admiration for you.

I’m not in a position to offer any useful help. I wish I was. I do wonder if it’s time you took a break for yourself, or you with your daughter. In addition to restoring your own energies, a brief time away from the usual routines can create openings for changes.

Maybe if you took a brief holiday your husband’s family would be more aware of what they could contribute (he can tell them by email). Maybe your husband would realise he’s taking some things for granted and reset his priorities.

If he’s anything like me, I can understand your husband getting over-enthused being relatively new to the world of computers and the internet. From his situation it must have dramatically opened up a freedom that was previously taken away. So I can forgive him that but he maybe needs to be reminded of the world closest to him.

How does he react when you point out that you’re feeling ignored? How clearly are you spelling that out to him?

But I think the big question for you to answer is how well are you treating yourself? You deserve a good life, too, and in your circumstances I think you need to work at that.

So, if you haven’t given yourself a good laugh today, I’d like you to really get a strong belly laugh at how ludicrous it is for someone like me to give you suggestions.

[YYZ]

Sorry to hear about your situation. Maybe the computer is the one thing that your hubby has left that he can control. I'm sure that you can probably see the underlying reason he spends most of his time on the computer.

That being said, it sounds like a pretty selfish habit he's gotten into. You will find this theme common on this forum. Although his situation is tough, he still has a mouth and a brain and could probably be doing more in the way of delegating his needs. The computer could be used to order supplies, for example.

Bottom line, you need to get that family more active in his life. That is just unacceptable in my book. Heck, just reading your story, I would pick up groceries or anything to help you out if you were close by.

YYZ

[kewlcatkez]

YYZ, on Mar 6 2008, 02:38 PM, said:

... could probably be doing more in the way of delegating his needs. The computer could be used to order supplies, for example.

yes, great minds think alike.... mine got lost in the blurp above lol..

Also, I have been thinking about this thread. GettingTired, if the reason that he can not order the supplies is because he doesn't know the details of them etc, you could write a list of them and where he has to go online whatever etc..It will likely feel strange to be doing so, but as an adult, and given that he has his computer which he is able to access now, it may help for him to take this over, even if partially at first..

Take care,

K

[qbounce]

Depression among long-term caregivers is, unfortunately a very common topic in the SCI world. Especially where family members are concerned. Are there any close family members you can train to help you take the burden off you a few nights a week? Are you putting too much pressure on yourself, afraid to let the reigns go a little for the other caregivers to feed, or do other chores around the house?

I had a caregiver who did the supplies, cleaned the house, cooked, while my wife worked during the day.

These are just suggestions, not sure if they pertain to your situation. I wish you all the best. . . and stop being so hard on yourself!! Your only human, and you deserve a break too, as all others here have pointed out.

[cate]

You need a break, take yourself and your daughter away for a few days, at half term or something. Also contact his family, invite them over for supper and asks them directly for help. and finally, as your husband is obsessed with computer, and you also have access, email him with your thoughts and tell him what you have told us, ask him to help out with the ordering etc, and to talk to you, but try on line first.

Also sort out the other carers as to what they are finding difficult, that they have to keep calling on you. Lookafter yourself and your daughter and if you cannot manage a few days away, then take the day off completely and go out with your daughter.

Lets us know how things are going, and look to this site for support.

Cate.

[GettingTired]

Hello,
Thank you all, so much, for all the replies. I have to say that everyone pretty much has the same ideas. Good ones at that. This man is spoiled totally rotten, and it's completely my fault. *smiling*
We've talked and talked and talked for the last few days, as I finally decided that if he was going to ignore me while I'm standing beside him, I'd simply instant message him, and interrupt whatever he was doing. He finally got tired enough of it, that he had no choice but to "listen" to me...it ended up with the Aide being sent away for the afternoon shift. I cover the Nurse shift, so for the very first time in 5 years, the three of us were alone in the house! It was heavenly!!! That was the first time that I've been able to freely have a converstation with him where someone wasn't standing behind me, or listening!! And did I mention the computer was turned off!!! Our 13 year old daughter, who usually stays in her room most every evening, sat with us, helped me cook, TALKED to her Dad, snuggled with me on the couch right beside him. Etc I can't tell you what that meant to me!! Almost brings me to tears just repeating it.
I do realize how important the computer is to him. the freedom it represents, and I'm going to have to learn how to deal with that. As for his family, I gave up. Nothing is ever going to change the way they are. The few times they've been here, they act like they know nothing about what he can or cant' do...such as talking and eating. It amazes me sometimes. I wasn't "good enough" persay, before the accident, and don't expect them to change their attitudes now. Sometimes I just don't believe they THINK about reality...or maybe they don't want to?? A lot of people are like that I guess.
Taking him out is a major chore, but believe me, if he wants to go, anywhere, I take him. His family reunion is in August, and I'm NOT looking forward to it. Temp reg is going to be a huge deal. Not to mention the transfers, batteries, etc...I'm sure you all know how much work is involved and how many supplies have to be carted along. You should have seen us when I took him to see NickleBack in concert! LOL...
I do what I do because he's my husband, and I love him. The accident may have changed some things, but not everything. He's been really focused on his cares, which is normal, but it's time to start paying some attention to his crabby wife...*grinning*
Thank you all!! SO much!! For letting me vent, listening, and being so supportive! I do appreciate it!!
Tammy

[nomis]

All the best for another good day, Tammy, and another and another...

[cate]

Good you talked, keep being strong, and hope things get a bit easier for you and your daughter, she must have felt very much out of the loop.
Cate

[Brindabella]

Hey,

Sounds like your life sucks. You didn't plan on being a lifetime carer (and responsible for someone else's life).. sickness and in health - wasn't that before people could survive quadraplegia?

You'd think the guy would have some sort of insight, some sort of emotional maturity to have been through so much, and yet he takes you for granted. I guess appreciating you every day would get tiring, but your life sounds like a joke. Perhaps it's time to take care of yourself, and stop looking for appreciation and validation from him.

I'm not American, so I don't know what it's like there, but surely there are other people that can care for him. It's time for you to stop uber-managing - take a step back so he can see you as you are. Perhaps you're just around way too much. Absence makes the heart grow founder, and we like people much more when they're fulfilling their own potential. Good luck.

[Stacia]

Brindabella, on Mar 10 2008, 11:18 AM, said:

Hey,

Sounds like your life sucks. You didn't plan on being a lifetime carer (and responsible for someone else's life).. sickness and in health - wasn't that before people could survive quadraplegia?

You'd think the guy would have some sort of insight, some sort of emotional maturity to have been through so much, and yet he takes you for granted. I guess appreciating you every day would get tiring, but your life sounds like a joke. Perhaps it's time to take care of yourself, and stop looking for appreciation and validation from him.

I'm not American, so I don't know what it's like there, but surely there are other people that can care for him. It's time for you to stop uber-managing - take a step back so he can see you as you are. Perhaps you're just around way too much. Absence makes the heart grow founder, and we like people much more when they're fulfilling their own potential. Good luck.

So you think that "in sickness and health" thing is just words? Not to be takes seriously? What if you were the injured party? Would you handle things in just the perfect way to make everyone else comfortable? Who knows how you would act, but lets not forget that this man is a C-2 on a vent. I dare say anyone who is not in his shoes really appreciates what he has lost.
Tired , I am so sorry you are feeling so down. It can not be easy for you or your daughter. You really do have to get some kind of a break. My husband is also C-2 , on a vent, peg tube and he cant speak any more. I met him after his injury and he had pretty much worked out a schedule that works for him. He has never let me do his personal care unless someone reported off and there was no backup, but he is the one who manages his staff, supplies, insurance info, bill paying and the such. He wants to be in control of everything he can, and he also hold down a good job. I wish you could hit more of a happy medium with your husband. Let him do what he can do for himself.

As for his family, it seems it would be either confront them frankly about their lack of help, or just let it go. If you continue to let it eat at you, it will do nothing but cause more harm. Have you talked frankly to your husband about how much this bothers you?

I understand when you say it is nice to have some time to yourselves. Jon has staff 24/7, and at first I felt gulity or sneaky about wanting private time with him. It was like they know what we are doing. lol and we are not teenagers ! I feel bad about your daughter too. She probably has deep feelings of loss because she has really missed out on having her dad to do things with. It is just a terrible situation for everyone isnt it?

I dont think for one second that your life is a joke because what you are doing is what we all hope someone we love would do for us in that boat, but you do deserve to be happy and content in that life too. Any time you want to vent you can pm me here, or my husband could maybe meet yours and they could share war stories. The computer is Jon's connection with the world now, and he is on it all the time also, but we always have time together during the day and evening, and I would miss that terribly.

i know I have just rambled on, but I just dont know what to say to make your life easier. I wish I did. I have a strong shoulder tho. I really hope things get better for all of you.

Staci

[Emmy]

GettingTired, on Mar 5 2008, 01:46 PM, said:

Hi. I just found this website today, and thought maybe I could find a little bit of comfort here. I'll be 44 this month.
My husband, who just turned 50 on 11/07, was injured in a vehicle accident five years ago, in March of 2003. As a result, he's a C2 Quadriplegic, (tetraplegia, as it's commonly referred to these days), and vent dependent. He was in ICU for six weeks, and in rehab for six months. We had only been married for 3 years in December before the accident in March.
We came home together in Sept of 03, and since that time, even with what's supposed to be full time nursing service, I have provided his cares, technically, from 3pm to 11pm, 7 days a week. I cover every shift that any Nurse or Aide calls in for, or simply isn't scheduled for, due to there being a lack of people willing to do home care in our area. I get very few nights of full sleep. Even if there is a nurse & aide on duty, I'm woken up for any problems with the him, the vent, the air bed, the feeding pump, etc. I'm not complaining. Just stating the facts of life as they are. I keep track of all the supplies that are needed, and do the ordering and storing after delivery. I keep track of all meds, ordering, set up, etc. In order to keep risk of infection at a minimum, I do the monthly trache change and foley change. And knock on wood, it seems to have worked. No infection of any kind, including UTI's in the five years since he's been home. In addition to caring for my husband, there is also the normal household chores. Cooking, laundry, dishes, house mainenance, etc and feeding him. I rarely let anyone else feed him due to the choking risk. He has a set routine, and has ROM for an hour and a half everyday before being dressed and being transferred to his recliner in the living room till 11pm at night. I've done everything humanly possible to make his quality of life the best it can possibly be. He has every new release movie there is, most new release books on CD, and recently got a computer that he's able to control, with a quad mouse and dragon speech. He's utterly thrilled at his new found independence, and having him happy makes me happy, BUT....he's gotten to the point of completely ignoring me due to the computer. I can stand right beside him, talking, or asking him something, and he doesn't even acknowledge my existence. The computer is literally in front of him, for the entire time he's not in bed, except for his meal, which he's started eating less of and hurrying through to get to the computer.
He has family close by, who have been here to visit him, MAYBE five times in the whole five hears since the accident. None of them offer to help me in any way. Not a single meal. Not shoveling off the sidewalk or driveway in the middle of a MN winter. Nothing. They don't stop in just to say hello to him, or visit. Again, nothing. Since he got the computer though, he spends quite a bit of time emailing them. The same people who don't do anything to help our situation, let alone make time to BE with him, yet he ignores me completely to spend his time talking to them on the computer.
Maybe I'm simply feeling left out or jealous or both. I really don't know. I just know that I'm tired all the time, and have no quality time with our 13 year old daughter, who now he barely says hello to when she gets home from school. There's a lot more to this whole story, and maybe I'm not on the right site to deal with what I'm going through. Maybe I just need a blog or to write it all down and get it out. I know I'm tired, and lonely and crying all the time. And wondering how my life ever got to this point....

HI Getting Tired- I know the feeling. My husband is a C6/quad. I we are 27 and have been married for 3 years. I love him more than anything, but it does get so hard. We do have the support of his family and it helps, but there are times they get in the way too. But I think we are better off with the help. I can't imagine not having them. I know how tough it is for me, so I know you are having a hard time.

I would talk to him and let him know how you feel. It is hard to do sometimes, but we have learned that we are better off being upfront and honest. This sounds bad, but sometimes it is good to fight and yell. It seems like every now and then I loose it, and yell and tell him how I feel. (Sometimes that is the only way to let it out) Then I see how much he means to me and how much we need eachother. It is rare for me to do, but really the times I did he understood how hard it was for me.

Time apart is a good thing. We live by it. Every Saturday we are apart. I go see my family or hang out with just my son and he visits family. I know in your husbands situation it will be harder, but it is worth finding a way to make it work.

Anyways- I hope everything gets better. I find this site to be filled with so much info and it is good to just let it out and not be judged.

Take care!
Emmy

[Brindabella]

Stacia, on Mar 25 2008, 08:03 AM, said:

So you think that "in sickness and health" thing is just words? Not to be takes seriously? What if you were the injured party? Would you handle things in just the perfect way to make everyone else comfortable? Who knows how you would act, but lets not forget that this man is a C-2 on a vent. I dare say anyone who is not in his shoes really appreciates what he has lost.

Being a quad doesn't give you the right to be a selfish twat, no matter what you've lost.

[Stacia]

Brindabella, on Mar 25 2008, 11:19 AM, said:

Stacia, on Mar 25 2008, 08:03 AM, said:

So you think that "in sickness and health" thing is just words? Not to be takes seriously? What if you were the injured party? Would you handle things in just the perfect way to make everyone else comfortable? Who knows how you would act, but lets not forget that this man is a C-2 on a vent. I dare say anyone who is not in his shoes really appreciates what he has lost.

Being a quad doesn't give you the right to be a selfish twat, no matter what you've lost.

Just like being able bodied gives you the right to be a judgemental biotch.

I am sorry that this family is having trouble, and she came here looking for advice and support, not to have her husband called names. I am so glad that you are full of the milk of human kindness. I know my husband never planned on becoming a quad. If it happened to you , I wonder how well you would handle it.

[qbounce]

Brindabella, on Mar 25 2008, 04:19 AM, said:

Stacia, on Mar 25 2008, 08:03 AM, said:

So you think that "in sickness and health" thing is just words? Not to be takes seriously? What if you were the injured party? Would you handle things in just the perfect way to make everyone else comfortable? Who knows how you would act, but lets not forget that this man is a C-2 on a vent. I dare say anyone who is not in his shoes really appreciates what he has lost.

Being a quad doesn't give you the right to be a selfish twat, no matter what you've lost.

I think Brinda is just being honest. . . maybe blunt, but honest.
Hopefully things have gotten better since you've talked a bit.

This post has been edited by qbounce: 26 March 2008 - 11:44 PM

[GettingTired2]

Hi Everyone,
I don't know what happened, but I couldn't login on to my account and had to open a new one.
Anyway, I've been implementing some new things around here. The afternoon that the Aide was sent away, leaving us alone together, as a family, for the first time in five years, was absolutely WONDERFUL! I ran with it! NOW, we have THREE evenings a week together! Nobody but us in the house! It's truly amazing! We all love it! We've done a lot of talking and crying and then more talking, that we desperately needed.
I've been planning a vacation for July. For my daughter, Amanda & I. We're going to be flying to West Virginia to visit my Mom and Brother for TWO WEEKS. I'm SO nervous about leaving him that long, but I have to do something. I need a break. I need time to run around with my sweet little girl, and not have to be "doing" something. And I don't mean for that to sound selfish. It's taking an act of congress to arrange nursing service, but hopefully it'll all work out.
I read somewhere else on these boards, where someone said that SCI changes everybody. The injured and everyone else. And their roles...and I have to agree. I do love my husband with all my heart, but neither of us are the same people we were pre-injury. I don't think it's possible to remain the same person, regardless of which side of the injury a person happens to be on. Yes, his life changed drastically, in ways I'll never be able to fully grasp, but then again, so did mine. And so did our daughters. But we muddle through...the best way we can. Isn't that what everyone does?
Jack isn't able to move at all, so he relies on someone, to do everything for him. He could take a more active part in ordering meds, etc, but I'm going to have to work on that. LOL And I think it's going to take a while. . .
If any of you want to contact me, to talk or offer advice, my email is tamnjax@mchsi.com
I'd add more, but have to go change the trache, order meds, etc etc.
And again, thank you ALL for listening...and being here.
Tammy

[Quadman's Wife]

Wow! What changes in only 6 weeks. That is great. I am happy for you. Just think where you will be in 3 months, 6 months and a year. Keep creating a life for yourself, your daughter and your husband.

I'm impressed.

[GettingTired2]

Hi! Don't be impressed... we're struggling through every day. Jack is my life, and Amanda. We do what we have to, to survive. You have no idea how much I appreciate your reply...everyone's replies.I haven't really talked to anyone since the accident. And, for some reason, I felt the need to tell Jack about what I posted here, and why.... I was worried that he'd be upset with me, or disappointed in me, but he wasn't. ... My husband is an amazing man! I only wish that everyone could see & know the brilliant, wonderful man he is! I suggested that he reply to Mama J...about her son, and he DID! He has SO much to offer to everyone, and I hope that sharing the knowledge he's accumulated over the last 5 years, will actually help him in some way.
I'm sorry for sounding like such a whiny baby in the first post, about the computer. But again, I DO appreciate your understanding....and the comfort offered... It means a LOT to me. ( I think I'm way too emotional, and always have been)...but is that a bad thing?
If you, or anyone else, ever wants to talk, please feel free to contact me... or Jack. I read these boards everyday... just to feel a closeness with everyone who's feeling the same things we do... or that I do?
Love to All...
Tammy

[Stacia]

GettingTired2, on Apr 24 2008, 08:38 AM, said:

Hi! Don't be impressed... we're struggling through every day. Jack is my life, and Amanda. We do what we have to, to survive. You have no idea how much I appreciate your reply...everyone's replies.I haven't really talked to anyone since the accident. And, for some reason, I felt the need to tell Jack about what I posted here, and why.... I was worried that he'd be upset with me, or disappointed in me, but he wasn't. ... My husband is an amazing man! I only wish that everyone could see & know the brilliant, wonderful man he is! I suggested that he reply to Mama J...about her son, and he DID! He has SO much to offer to everyone, and I hope that sharing the knowledge he's accumulated over the last 5 years, will actually help him in some way.
I'm sorry for sounding like such a whiny baby in the first post, about the computer. But again, I DO appreciate your understanding....and the comfort offered... It means a LOT to me. ( I think I'm way too emotional, and always have been)...but is that a bad thing?
If you, or anyone else, ever wants to talk, please feel free to contact me... or Jack. I read these boards everyday... just to feel a closeness with everyone who's feeling the same things we do... or that I do?
Love to All...
Tammy

Hi Tammy and Jack,

I hope things are better for all three of you. I feel for you all, but I can't say I know what you have been through because I didnt meet Jon until after his accident. I never knew him before, and there was never that comparison of what was and what is. He was a year post when we met, and he still had a lot of issues he had to work through. When we met , it was as friends, and I was in a relationship with another guy. Romance was the last thing on my mind. Those feelings just snuck up on me. The guy I was dating was a gem. A nice man, good job, lots of good qualities, but I found myself wanting to spend more and more time with Jon. I had liked him from the first time we met, but one day I realized I LOVED him. I knew the restrictions his physical condition put on our lives. There is very little spontinaity with a C-2. We were never going to just jump on a plane and take off for an island in the Pacific, and I also had to consider that children were perhaps not in our future. I had to put up with a lot of resistance to staying with Jon, and that didnt come from friends or relatives as much as it came from him. It was just something we both had to work out, and he had to learn to trust that he was still attractive and sexy and could make me happier than I thought possible.

If I had anything to complain about, it would be lack of privacy. We have discussed this at great lengths , and when we move, Jon has agreed to do away with one shift to see how it goes. Like I told him, nothing is written in granite, and if it doesnt work, he can hire on. He doesnt require that much care really...he does need suctioning, and needs to be turned, but I am always here, and I want to do that for him. He can be stubborn, did I tell you that? lol

The only major problems in our life are the medical problems that have come up. Last year was horrid, but he is doing so much better now. He had one thing after another , and it just got so old. He had pneumonia, infections, and pressure sores to deal with, and it was almost too much. For the first time I thought his spark was going out, but things turned around thank God, and he is back to his old self again.

When I was a little girl, I used to dream of the man I would marry, and the adventures we would have. I never dreamed that this would be the life I would choose, but I have never had a regret.

I hope you are doing better, and if you ever want to talk to either of us, just dash off a note. We are thinking of you and pulling for you!

Staci

[getting tired's other half]

Yes, it's me... the husband of “getting tired”... and I am a self proclaimed selfish jerk ... maybe even a “twat” in some circles. To start, some of my history:

I am a C2 quad, and have been since March 18, 2003. I have no function below my neck, and limited mobility as far as head movement. I can move my head possibly 5° left to right and 15° up-and-down. It truly feels like I am encased in concrete.

I was in a way “fortunate” that I was hurt on the job and qualified for Workers Compensation insurance. So, many of my needs were met as far as the physical aspects. My wife did her more than her best to keep my mind occupied by buying most of the new release videos, and numerous audio books for when I was in bed.

Regardless, I had way too much time to think. To think of all the things I would never be able to do again. Having gone through years feeling inadequate; I felt that the future, in this condition, was going to be unbearable. I, like many others, had feelings that life was not worth living!

It took 4 1/2 years for my lawyer to finally convince a judge that a computer would be a medical necessity... to help ward off depression.

Well, the moment I did have a computer that was handicapped equipped, I was in heaven. I was able to reach out to friends and family once again. And to use my mind, which had felt dormant, in many new and exciting ways was wonderful. I could only see that it improved my quality of life, but not that of my wife's, my daughters, or the people around me.

The computer only revealed, and exaggerated, a problem in our relationship; a lack of communication! It is true what the wife said about my family. Suddenly, after getting the computer, there was a flurry of correspondence that had subsided over the years. I got involved in the planning of a family reunion that is going to happen this August. I even designed a T-shirt. It was all-consuming; at the expense of my relationships at home. since I let off on my involvement, it seems like my family has retreated back to the woodwork.

My wife can be quite passionate on certain issues, and our initial approach to the situation was needless to say; somewhat volatile and rightly so. It was figuratively, a”slap in the face” which I rightly deserved. It opened my eyes to what had been going on in the past, was going on in the present, and what needed to be corrected in the future. We had some heart-wrenching conversations to follow... that cleaned up years of relationship neglect.

We really talked and shared deep emotions that had been bottled inside each of us all those years... how refreshing! I know that I had been keeping my feelings to myself... and she, to herself. To have everything all in the open, enabled plans for a new course for the future; much of which, you have already heard the details.

In the end, I hope that revealing our life story, as it has played out post-accident, can help even one relationship out of thousands which I know have been hard. I am finally ready to move on; with an acceptance of the real future... and leave behind a beleaguered past, working together with my wonderful wife.

This post has been edited by getting tired's other half: 26 April 2008 - 02:37 AM

[GettingTired2]

Hey Husband.
First of all, have I told you lately that I Love You? *grinning*
And second, have I told you lately that you write like a college professor? *laughing*
Seriously, thank you Darlin'. For listening, for validating how I felt, good, bad, right, wrong or indifferent...and thank you for loving me!! And thank you for being you! Are you sufficiently adored and appreciated yet? *grinning again*
Communication is THE biggest factor in any relationship, injury or no injury. Is everyone here tired of us now? LOL
Thank you, to ALL of you! Posting on a web board was the farthest thing from my mind at any time, but I have to say, that it helped to write it all down, and it helped to know there were people who were willing to listen, and offer advice. That means a lot!

Tammy

[nomis]

Hi GettingTired2 both halves

You guys are fun. I'm sure all of us who are or have been in committed relationships can identify with your process. All good relationships need to be worked at and I know for myself I regularly needed a good prod.
Thanks for the drama and the open way you're prepared to share yourselves with us. Oh shucks, it feels like we're all family.

This post has been edited by nomis: 26 April 2008 - 09:42 AM

[GettingTired2]

Hi Nomis!
You sure make me smile, whether it's answering us or anyone else! Love your sense of humor!
And if you want Drama, boy oh boy, I can deliver you some major drama! *laughing*

Between us, Jack and I have 8 kids. He has 3 girls from a previous marriage, I have 4 boys from a previous marriage and then there's Amanda. She's 13, the others are all over 21. So believe me when I say I could keep your mind reeling from everything the older 7 do!

AS for being open, well, what other way is there TO be? It simply doesn't do any good to not be honest and put the truth out there. Although I do try not to say things in a way that would offend or hurt anyone.

If nothing else, the accident taught me that life can change in a nano-second, and not to take anything for granted. Especially not the people who mean the most in my life, and life itself. I've learned to laugh a lot. That seems to help when things get totally out of control. (Which seems to happen an awful lot around here!)

Jack is the brain in our operation....*laughing*.... as I'm sure everyone will discover as he posts more. And I'm the emotional baggage he got stuck with! He was being diplomatic when he said that I can be quite passionate about certain issues! *laughing again*

Anyway, didn't mean to get off track... but then again, that's ME...*grinning*

Take care and talk to you later!
Tammy