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It's Too Hard - Unable To Cope


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#1 nickandnora

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Posted 11 April 2010 - 09:47 PM

Hello all. I am the primary caregiver to an incomplete C5. We were together about a year and a half before an at-home accident resulted in his quadriplegia on Dec. 16, 2009. Since his accident and homecoming in February, I have to say it's almost too hard. I have a background in nursing, but after the death of my daughter I lost all my passion for that particular career. Now, 6 years later, I find myself taking care of another loved one. Only this time, it's a grown man, not a baby. One of the problems we are dealing with is that we do not live in a handicapped apt. due to our finances before and since his accident. He used to be a chef and did all of our cooking (yum!) and now I do it (no good). I quit my job to take a lesser paying one right across the street from our home. Our families are financially supportive somewhat, but not very hands-on. His father is deceased and his mother told him outright she would put him in a nursing home rather than quit her job to take care of him. My parents just went through a nasty divorce and now reside in other states. We haven't had much luck finding a doctor to prescribe home health care so we can get someone just to help us get his medical supplies (catheters, etc.). He rarely wants to go anywhere or do very much, partly because it tires him out and partly because he just doesn't want to go in public. Since he's a new quad I can understand how he would feel this way; I can't imagine I would feel much differently if it were me. I do hate that I can't go anywhere or do much without him. If I take too long grocery shopping, he'll call me to find out what's going on. I know he feels alone all day, since I can only come check on him every couple of hours. I've had mono throughout his hospital stay and since he's been home, and when I tried to catch some extra sleep on the weekend, he accused me of not wanting to spend time with him. I'm home!! I'm not going anywhere. I love him, and I want to take the best care of him that I can, but I'm beginning to think that it's all too much. Working full time, going to conferences to keep my teacher certification, taking care of him, doing all the housework. Am I just being too selfish or am I right in thinking that this as hard for me as it is for him? Maybe not as hard, but it's not easy now, is it? What do I do? I feel like I'm on the verge of a nervous breakdown. I cry easily, I get so angry easily, I'm always tired, I can't get over being sick, and I never seem to be able to get on top of everything he needs.

#2 E-DOG

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Posted 12 April 2010 - 03:35 AM

Hey babe, let me be the first to welcome you to our little slice of heavenly insanity. Sargent Simon's home for wayward gimps 'n gimpettes let loose to reak havock upon a society unworthy of our obviously advanced state of enlightenment and overall coolness.

OK. Of course you understand your ol' man is fresh out of rehab and anxiety ridden. Scared to death you might leave him abandoned tossed to a curb somewhere on skid row, or worse.

Then there's you having to make all sorts of wierd adjustments to your life, which like it or not will have a subtle effect on your attitude. And that's projected back to him, and of course he magnifies it, making it that much worse.

Jeezus H. babe, ya'll got a lot to deal with here. You need to find a way to get someone in there to do the majority of the caregiving. All that pressure and something has to give somewhere. and when it does, whew, it's gonna be ugly.

It's still really early in the game. Have patience. A little gentle prodding and he'll start getting out more. Show him our site. He belongs here even more than you.

Of course you're on the verge of a break-down. Consider the pressure yer under.
Hell, it's a frigging miracle you ain't left him altogether. or worse, shot him and THEN left.
This shit is gonna take some time. COMMUNICATE. Let him know just what's up with you. Then listen to his side.
Remain calm, deep breath, and relax. Believe me, All will be OK.

It's gonna take time. Just keep comin' back.

E-dog
when it absolutely, positively, has to be destroyed overnight, call the Marines.

I will nevah, EVAH take a pinch from a greasy muddahf*@kah like you!

How 'bout if I spell it out for ya. D-I-L-L-I-G-A-F

#3 jscott92064

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Posted 12 April 2010 - 04:42 AM

Those are good words, E-Dog. It's like you wrote those also for me. My husband is a recent para too and it's one crazy ride. I imagine things will settle in a year or two.....just have to hang in there.

#4 allis53ca

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Posted 12 April 2010 - 06:41 AM

welcome Nora...get Nick on here to communicate some..he needs some attitude adjustment, cryin times over and he needs to get up n get on with life...shit, hes home already..most of us were so effed after our accidents that we weren't off our respirators yet much less home...hell, some of us still haven't made it home years later....get him on here, it'll help him to see he's far from the bottom.




....Ian, did you change meds ?...that was an awful sane sounding reply.

#5 greybeard

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Posted 12 April 2010 - 09:35 AM

In the UK every local authority has a Social Services department that is set up to help in circumstances like this. Do you have anything similar in the US that you can approach? You sound as though you need to get some help before you crack up completely.
........and get your man on here. He won't find a better place to help him put things into perspective.

Edited by greybeard, 12 April 2010 - 09:37 AM.

Carpe Diem


#6 gordonr

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Posted 12 April 2010 - 01:26 PM

Quote

We haven't had much luck finding a doctor to prescribe home health care so we can get someone just to help us get his medical supplies (catheters, etc

Nora,

This is where you have to put your priority.

You have to find out every bit of assistance that you qualify for, either with your own insurance or with medicare or whatever.

The first step would be to find whatever counselling they have at the hospital he was at, or whatever organization for paras and quads, or just general social services. And then you will find what is available. I know this seems daunting, and you don't know where to go, but knocking on the wrong doors will quickly lead you to the right ones. And there may be more for you than you think.

Lot's of people on here have home care assistance. So whatever is available, you must get.

And beyond that, you need to be in contact with people who know what you need to think about.

Like here, but in real life, in your community.

Next.

It is very important that he not be getting into serious health trouble right now because of your inexperience.

What I am thinking about is pressure sores.

He MUST not get pressure sores, because your life will then get suddenly much more complicated.

The good news is sores are NOT inevitable.

Don't be shy.

Ask and ye shall receive, right here, state of the art advice and instruction on the care and feeding of the quad.

And for him: detailed instruction on how to overcome his limits, and to the extent possible, care for himself.

Welcome.

Don't panic.

There is much to be learned. Much progress to be made. You guys can do this.

Best Regards,

Gordon

#7 cowgirl

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Posted 12 April 2010 - 04:41 PM

Hi Nora,

E-dog has really good points! This is a rough time for you, your husband, but it will get better, and better for you both, it takes some time.

Maybe you can get a housekeeper for 4 hours or so a week, just to help with the big projects, like floors, dishes, laundry. That may be possible and take a bit off your shoulders. Maybe declare a certain time, even an hour, just for you, no calls, just you, read, sleep, etc. If you can not take care of you, it is hard to take care of anyone else. So your needs are a priority also, so you can help each other through the begining months which are hardest.

Keep up your courage and strength and take care of you and your husband. The founder of this site is a C-5 I think, read about him, he goes and does a lot of things, just takes time to get stronger and your husband will. As he improves, he will do more and that will help you.

Good books out there, Wheelchairs on the go, some for some states, gives great places with wheelchair access and plan to go somewhere out, not real public to start may help. But it is early. BUT THINGS WILL GET BETTER!!!!!!!

He should get on this site and talk to somepeople, he can vent, get advise, etc.

There are medical supply companies that will help you order the supplies you need every 30 days. They will at times fax your DR. for the needed forms. Insist on the forms you need to help yourself.

Do not know where you are, I am in Frida and the Brain and Spinal Injury group was a tremendous help.

Check with churches, maybe someone will help you with what you need.

Well, you hang in there and your husband too. Life is just great and will be again for you both!!

You can always send me a message, been injured at T6-7 for 61/2 years. Take care of my self and live on my own. But, took me a while to get things together, and gain more strength.

HANG TOUGH, USE YOUR COURAGE AND LOVE AND PRESS ON, GET THE HELP YOU NEED, CALL ON FRIENDS AND FAMILY, IF THEY CAN ONLY GIVE A FEW HOURS EACH WEEK. BE STRONG SMILE AND MAYBE A LITTLE PUSHY FOR YOUR NEEDS NOW.

Kay (cowgirl)
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#8 cowgirl

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Posted 12 April 2010 - 04:50 PM

View Postjscott92064, on Apr 12 2010, 05:42 AM, said:

Those are good words, E-Dog. It's like you wrote those also for me. My husband is a recent para too and it's one crazy ride. I imagine things will settle in a year or two.....just have to hang in there.
I am a para, live alone, travel alone or with friends, shoot pool, swim, ride my horse, grocery shop and unload (yuck) myself. But time to get stronger and better at what you try is needed. But try until you get it, your husband that is, because one month you can't do it, but the next month you can, you get stronger and do not know you can now do more that you could before.
cowgirl
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#9 nickandnora

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Posted 12 April 2010 - 11:43 PM

"What I am thinking about is pressure sores.
He MUST not get pressure sores, because your life will then get suddenly much more complicated.
Best Regards,

Gordon"

Unfortunately, he got a pressure sore while in the first three weeks of his hospital stay. The physical therapist at the first hospital kept picking him up by his pants w/out a posey belt or a diaper, etc. and caused a shearing sore. He also developed one on each foot while at his physical therapy. We made an appt. at a nurse practitioner's office and begged her to look at his sores. Fortunately, she helped us find a wound care facility that is wonderful. I've also been looking into support groups here in our area, but several of the ones we're intersted in meet at times that interfere w/our routines. Don't worry. Every time I've looked in the mirror for the last four months I just tell myself "It's gonna get better. God doesn't give us more than we can bear."

#10 nickandnora

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Posted 12 April 2010 - 11:50 PM

By the way, thank you to everyone on here for their kind words. Apparently "Nick" is already a member on here, I just didn't know it :lol: But thanks again to everyone.

#11 E-DOG

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Posted 13 April 2010 - 12:13 AM

View Postnickandnora, on Apr 12 2010, 04:43 PM, said:

Unfortunately, he got a pressure sore while in the first three weeks of his hospital stay.

Nuthin wrong with the occassional pressure sore.
I get 'em all the time. I use them for ash trays. Shot glasses for my friends at parties. The bigger ones make great cereal bowls for the kids.

There Scott, is that more like it?

E
when it absolutely, positively, has to be destroyed overnight, call the Marines.

I will nevah, EVAH take a pinch from a greasy muddahf*@kah like you!

How 'bout if I spell it out for ya. D-I-L-L-I-G-A-F

#12 gordonr

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Posted 13 April 2010 - 12:38 AM

View Postnickandnora, on Apr 12 2010, 11:43 PM, said:

Unfortunately, he got a pressure sore while in the first three weeks of his hospital stay.

Ok.

But did he get rid of it?

If he has anything that he is sitting on, then he should get all the way off it until it heals.

And if he is sleeping on it, you have to find other positions.

It is not normal to just live with sores. They must be completely healed.

Living with them leads to worse and worse consequences.

I say this, because you are new and might underestimate the importance. Sores kill more SCI than anything else except kidney failure.

This is not something you want to learn through your own experience.

Best,

-G

P.S. I love your attitude.

#13 hooplady

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Posted 13 April 2010 - 02:40 AM

Nora,
My heart goes out to you, those first few months are the bleakest. I have no idea whether it's just as hard on the caregiver but trust me - we all know that it's hard for both of you. But it will get better!

I remember the first night when they delivered my b/f to his new apartment that he had never seen (I had to arrange it for him while he was in rehab since his old place was completely inaccessible). When the door closed behind us I was suddenly terrified. Like you, we had no family or help here. It was just me, totally responsible for him. But also like you, the only other choice was to send him to a nursing home - from which, they told me, he would probably never leave.

Using the hoyer lift was scary - we both thought I was going to drop him. But I managed to get him into bed, and the next time it was easier and even easier the next time...and so it went. It was 6 months before I had any respite care - even when his family came to visit, I still did all his wound care, BP, etc. The only reason we got someone else to care for him was because my mom died and I had to travel out of state.

I'm telling you this because now I know that I was wrong to go so long with no help. I was on the verge of collapse, and besides it isn't safe to have only one person trained as caregiver. If I had gotten sick or injured he would have been in trouble.

If you can get someone to assist just a few hours per week, it will help a lot. His mother doesn't have to quit her job but can she come for a short visit? Can you hire a home health aide just a couple hours per week? Anyone at church who can help with laundry or cooking? Get some of his friends to bring pizza and watch a ball game on TV one night? In the US we don't have any formalized organizations for these things - we really do have to cobble together our own support systems.

Reassure him that you aren't cutting out, but you need your own time to maintain your sanity and your health, otherwise you'll both be in sad shape. It's good that you have both joined this site - whatever you need, from advice on pressure sores to a good swift kick in the arse, you'll find it here.

Good luck. A year from now you will look back and be amazed at the progress you've made. But it's a wild ride between here and there.

-Janet

#14 jenny407

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Posted 13 April 2010 - 10:42 AM

View Posthooplady, on Apr 13 2010, 04:40 AM, said:

I'm telling you this because now I know that I was wrong to go so long with no help. I was on the verge of collapse, and besides it isn't safe to have only one person trained as caregiver. If I had gotten sick or injured he would have been in trouble.

If you can get someone to assist just a few hours per week, it will help a lot.

-Janet


I absolutely agree with Janet. I only know from my friend whose husband is very sick with MS, but the situation is similar. Good luck, Nora! I'm sure this site is very helpful, and I'm also sure things will get better, but do take care of yourself also.
"Life is what happens to you while you're busy making other plans." John Lennon

#15 Motor

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Posted 13 April 2010 - 10:43 AM

View Postnickandnora, on Apr 11 2010, 05:47 PM, said:

Hello all. I am the primary caregiver to an incomplete C5. We were together about a year and a half before an at-home accident resulted in his quadriplegia on Dec. 16, 2009. Since his accident and homecoming in February, I have to say it's almost too hard. I have a background in nursing, but after the death of my daughter I lost all my passion for that particular career. Now, 6 years later, I find myself taking care of another loved one. Only this time, it's a grown man, not a baby. One of the problems we are dealing with is that we do not live in a handicapped apt. due to our finances before and since his accident. He used to be a chef and did all of our cooking (yum!) and now I do it (no good). I quit my job to take a lesser paying one right across the street from our home. Our families are financially supportive somewhat, but not very hands-on. His father is deceased and his mother told him outright she would put him in a nursing home rather than quit her job to take care of him. My parents just went through a nasty divorce and now reside in other states. We haven't had much luck finding a doctor to prescribe home health care so we can get someone just to help us get his medical supplies (catheters, etc.). He rarely wants to go anywhere or do very much, partly because it tires him out and partly because he just doesn't want to go in public. Since he's a new quad I can understand how he would feel this way; I can't imagine I would feel much differently if it were me. I do hate that I can't go anywhere or do much without him. If I take too long grocery shopping, he'll call me to find out what's going on. I know he feels alone all day, since I can only come check on him every couple of hours. I've had mono throughout his hospital stay and since he's been home, and when I tried to catch some extra sleep on the weekend, he accused me of not wanting to spend time with him. I'm home!! I'm not going anywhere. I love him, and I want to take the best care of him that I can, but I'm beginning to think that it's all too much. Working full time, going to conferences to keep my teacher certification, taking care of him, doing all the housework. Am I just being too selfish or am I right in thinking that this as hard for me as it is for him? Maybe not as hard, but it's not easy now, is it? What do I do? I feel like I'm on the verge of a nervous breakdown. I cry easily, I get so angry easily, I'm always tired, I can't get over being sick, and I never seem to be able to get on top of everything he needs.
Hey E=Dog LTNS well guys after 22 years of marriage and being in a chair for 5 years that job of care taker became just to much. My wife walked out on me in Feb. Lesson I learned was I should of became independent ASAP instead of counting on her. I suggest whenever possible get outside help. If not your relationship changed from husband/wife to patient/caretaker and something gets lost. Just my opinion. I paid the ultimate price. My accident was my fault but slowing my independence was mine. Her leaving was the kick in the ass I needed. The little things I asked fpr help to do I now am forced to do myself. I got my license and drive all over. I sold my trike to buy a car. I hope to get back with my wife, but we are going on 4 months. I doubt it. Good Luck and crawl before you walk.

Richie aka motor
"CHEAP WOMAN AREN'T GOOD AND GOOD WOMAN AREN'T CHEAP"
"NEVER 4GET 9/11/01 THEY ARE GONE BUT NOT 4GOTTEN"
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Richie aka MOTOR :-)

#16 Tetracyclone

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Posted 13 April 2010 - 01:28 PM

Richie-

thank you for sharing that. It is a heads up to all of us to do all we can to help with family welfare. Feeling exploited will poison any relationship and of course a spouse knows when we could do something if we pushed ourselves.
Look! It's a snail! It's a sloth! Able to creep short distances before lunch!

#17 allis53ca

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Posted 13 April 2010 - 03:04 PM

"There Scott, is that more like it?".......much better, thankyou

#18 nickandnora

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Posted 14 April 2010 - 12:33 AM

Wow! I went to work for one day and look at all that happened lol. Thank you again to everyone for being so understanding. I have to say, I half expected people to tell me to get over myself, that I'm the one that's still walking so I should be grateful, etc. By the way, I don't know if anyone else will feel like this; however, I feel very guilty that it was him and not me. I mean, we were arguing over money (it was Christmastime), he gets up to go smoke a cig, trips and falls, then tells me he can't feel anything. I actually thought he was just trying to make me feel bad about our argument. I just...i don't know. Every time he asks me to do something that I really don't want to do, I feel bad because I know this is my fault to a certain extent. Aside from whose fault it is, just the fact that he has to watch me do everything for him, you know? Like I'm inadvertently rubbing it in his face that I can do all this stuff and he has to just sit there. Do any of you feel resentment towards your caretakers? I mean, it would be normal (I would think) to feel a certain resentfulness to all able bodied people, let alone the person now taking care of you. Or am I just not being normal?

#19 nickandnora

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Posted 14 April 2010 - 12:44 AM

Janet-Wow. Your first night sounds like our first night lol. Except that we don't have a lift. I do all his transfers. Fortunately, I had a really good background in gymnastics/cheerleading/dance so I knew how to lift, plus we got lots of practice while he was still in the hospital. As far as friends helping out go, trust me I've asked repeatedly and several of them don't even bother to answer my texts or calls anymore. And his family is just odd. No other way around it--odd. At least mine all live in different states/countries lol. The people who really would help us out don't live near us, just came to see him after the accident. It's been a long-standing argument between the two of us that he doesn't surround himself with quality people; people that are really and truly your friends, not the people we go out to party with. Anyway, I have high hopes. Thank you again for your response honey.

"We rejoice in our sufferings, for we know suffering produces perserverence, perserverence-character, and character-hope. And hope does not disappoint." Romans 5:3-5a

"Hope is a good thing, perhaps the best of things. And a good thing never dies." Stephen King

#20 nickandnora

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Posted 14 April 2010 - 01:11 AM

G--He sleeps on a Roho air mattress and 2 Roho chair cushions, plus a changeable wedge and different pillows, wedges, etc. all for turning him and keeping pressure off his feet, knees, hips, etc. He sees a wound care specialist once a week now. He doesn't really like to talk too much about his sore, but I can't really tell if it's because he would rather not know (ignorance is bliss) or if he's scared or if he doesn't think it's a big deal; maybe even some combination of all. I know it might seem like I'm making excuses because "we have no friends, no one will help us". Honestly, though, I make $8/hour and he doesn't get anything from his SSI until July. We can barely afford to pay our rent, elec. and other bills on time, let alone hire somebody to come to our apt. Medicaid will pay for home health care, but as I said, we have had trouble finding a doctor that takes Medicaid and is willing to treat a new quad. Also, we don't live in a handicapped apt. nor can we afford to move anytime soon. Arrrggg!!! Anyway, I feel better, so thanks :P

#21 hooplady

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Posted 14 April 2010 - 03:59 PM

View Postnickandnora, on Apr 13 2010, 08:44 PM, said:

Fortunately, I had a really good background in gymnastics/cheerleading/dance so I knew how to lift,
Ohmigosh, you just gave me visions of you flipping him up into the air in a double somersault, off the vault and..."He sticks the landing" [crowd roars].

Thanks for the laugh...hope you get some of your own, it helps a lot.

-J.

#22 ericr

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Posted 26 May 2010 - 03:51 AM

nora- first what state are you in? I am florida and was hurt c5 c6 a year ago yesterday. i know our medicaid here pays you about 600 per month while you are waiting for your ssdi to kick in. check into that. medicaid also now pays for catheters also which you can order online from euromed.com they take care of all the billing and ship every month no questions. medicaid does cover alot you just need to get through and get it. i have gotten them to pay for seat cushion/ chair backs and other expensive items you need to get with a good wheel chair supplier in your area.
I am very happy to hear your husband has you many 26 yr olds would run a way fro m this. just remember these 2 quotes i live by :"Challenges are what make life interesting; overcoming them is what makes life meaningful" and "you dontknow how strong you are until bieng strong is your only option"

I was in your husbands position just a few months ago and a piece of advise you both have to stay positive keep focused and set goals with therapy. make that his priority it will keep him busy feeling good and he will meet others in his situation.
couple of sites to check out:

www.spinalcord.org
www.floridabrainandspinalcord.com
christopheranddanareevefoundation.com
www.euromed.com
www.sportaid.com

let me know what state and ican help find a physiatrist in your area but you should ask his hospital who his physiatrist was there. he should take medicaid and if hedoesnt all you need isa referral from a primary dr.

#23 ss770640

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Posted 27 May 2010 - 11:51 AM

View Postnickandnora, on Apr 11 2010, 10:47 PM, said:

Hello all. I am the primary caregiver to an incomplete C5. We were together about a year and a half before an at-home accident resulted in his quadriplegia on Dec. 16, 2009. Since his accident and homecoming in February, I have to say it's almost too hard. I have a background in nursing, but after the death of my daughter I lost all my passion for that particular career. Now, 6 years later, I find myself taking care of another loved one. Only this time, it's a grown man, not a baby. One of the problems we are dealing with is that we do not live in a handicapped apt. due to our finances before and since his accident. He used to be a chef and did all of our cooking (yum!) and now I do it (no good). I quit my job to take a lesser paying one right across the street from our home. Our families are financially supportive somewhat, but not very hands-on. His father is deceased and his mother told him outright she would put him in a nursing home rather than quit her job to take care of him. My parents just went through a nasty divorce and now reside in other states. We haven't had much luck finding a doctor to prescribe home health care so we can get someone just to help us get his medical supplies (catheters, etc.). He rarely wants to go anywhere or do very much, partly because it tires him out and partly because he just doesn't want to go in public. Since he's a new quad I can understand how he would feel this way; I can't imagine I would feel much differently if it were me. I do hate that I can't go anywhere or do much without him. If I take too long grocery shopping, he'll call me to find out what's going on. I know he feels alone all day, since I can only come check on him every couple of hours. I've had mono throughout his hospital stay and since he's been home, and when I tried to catch some extra sleep on the weekend, he accused me of not wanting to spend time with him. I'm home!! I'm not going anywhere. I love him, and I want to take the best care of him that I can, but I'm beginning to think that it's all too much. Working full time, going to conferences to keep my teacher certification, taking care of him, doing all the housework. Am I just being too selfish or am I right in thinking that this as hard for me as it is for him? Maybe not as hard, but it's not easy now, is it? What do I do? I feel like I'm on the verge of a nervous breakdown. I cry easily, I get so angry easily, I'm always tired, I can't get over being sick, and I never seem to be able to get on top of everything he needs.


i was with my girl for 1 year before i broke my T12. i was mega paranoid about the whole relationship/pressure thing. 3 years later, everything is pretty much normal. the way it was before. she even returned to shouting at me!! (i had a 1 year pity period where i could do anything i wanted!). she thinks we are better now than we were before. i insisted on becoming independent asap as i hated the thought of her running after me. now i help with the dusting & erm... puting the dishes in the dishwasher, maybe i even pair a few socks.

however in your situation, i think it is best to alleviate the pressure on you. get someone in to help with cleaning etc. i offered this to my girl but she declined. insisted she could do better! haha. (she has OCD down to microbe level!)

there must also be plenty charities that can help your boyf get out and about to give you a break. am sure he would want a bit of freedom also given he is always couped up inside all day long.

i think the key is to help yourself first, which will help you help him.

before you know it, things will be back to normal. albeit with a ramp or two.

good luck. i know you'll be fine.

#24 allis53ca

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Posted 27 May 2010 - 02:34 PM

nora, pm me w/ure guys loca (county/city/state)...i might be able to help you get into a rent controlled modded apt, depending on where you are

#25 GoldenYears

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Posted 16 June 2010 - 08:02 AM

View Postnickandnora, on Apr 11 2010, 10:47 PM, said:

Hello all. I am the primary caregiver to an incomplete C5. We were together about a year and a half before an at-home accident resulted in his quadriplegia on Dec. 16, 2009. Since his accident and homecoming in February, I have to say it's almost too hard. I have a background in nursing, but after the death of my daughter I lost all my passion for that particular career. Now, 6 years later, I find myself taking care of another loved one. Only this time, it's a grown man, not a baby. One of the problems we are dealing with is that we do not live in a handicapped apt. due to our finances before and since his accident. He used to be a chef and did all of our cooking (yum!) and now I do it (no good). I quit my job to take a lesser paying one right across the street from our home. Our families are financially supportive somewhat, but not very hands-on. His father is deceased and his mother told him outright she would put him in a nursing home rather than quit her job to take care of him. My parents just went through a nasty divorce and now reside in other states. We haven't had much luck finding a doctor to prescribe home health care so we can get someone just to help us get his medical supplies (catheters, etc.). He rarely wants to go anywhere or do very much, partly because it tires him out and partly because he just doesn't want to go in public. Since he's a new quad I can understand how he would feel this way; I can't imagine I would feel much differently if it were me. I do hate that I can't go anywhere or do much without him. If I take too long grocery shopping, he'll call me to find out what's going on. I know he feels alone all day, since I can only come check on him every couple of hours. I've had mono throughout his hospital stay and since he's been home, and when I tried to catch some extra sleep on the weekend, he accused me of not wanting to spend time with him. I'm home!! I'm not going anywhere. I love him, and I want to take the best care of him that I can, but I'm beginning to think that it's all too much. Working full time, going to conferences to keep my teacher certification, taking care of him, doing all the housework. Am I just being too selfish or am I right in thinking that this as hard for me as it is for him? Maybe not as hard, but it's not easy now, is it? What do I do? I feel like I'm on the verge of a nervous breakdown. I cry easily, I get so angry easily, I'm always tired, I can't get over being sick, and I never seem to be able to get on top of everything he needs.
When we work with unrelated patients, we get to go home after our shift. Not true when our patient is a loved one. And no, you aren't being selfish. It's called burnout. You are trying to do too much alone.

Our disabled loved ones can and do give us some smacks they wouldn't dare give outside caregivers.

Often we expect too much of ourselves and pile too much on ourselves. This is made worse by financial constraints.

Every Nurse has walked the path you are now on. We've all experienced every stage of burnout. Yours seems to be early stage and you can stop the progress of burnout getting worse at this stage. If you don't, you know what will be coming down the pike. You don't want to go there and he doesn't need you to go there.

You need a day or two off for YOU and this "day off" plan should be regular and predictable and on schedule. Put some rules in place. As well some research needs to be done to find some Social Services that can help you and him. He really needs some outside involvement somewhere because right now you are the sum total of his life.

Of course, all of this is easier said than done, Dear. But sometimes all of us need that hand that reaches through the dark to pull us back into the light. You will be fine and so will he, but ya gotta take care of you too!

Best wishes.
Golden

#26 stillgotswag

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Posted 16 June 2010 - 12:37 PM

Nick and Nora,

Over the last year Ive been in a eerily similar situation. (not my 1st) and the most important thing you can do is get some help in there! Don't let the finance/insurance situation deter you. I worked about 15 months of my life leaving me with medicaid and a shitty SSI check. Ive had home health 3 yrs or so, but I had to go to a nursing home for 45 days 1st to qualify for a state program. (CBA community based assistance.) Definately check for any state assistance... Tx is great with it...and most places are coming around. I've heard 'taking care of a grown man not a baby' before... lived it. It is alot to deal with, we are selfish to expect it, but if you dont get help it WILL cause resentment. (sounds like it already has.) Keep looking!

We all know about going out in public in the begining. Takes time and support. More support than time ;) Things arent gonna change nick so chin up.

I wish you 2 well. Nothing is better therapy (4 anyone) than having somebody...

Mike
I never did like snakes... so I got out the gutter.




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