45 replies to this topic

[The Wife]

My husband is a quadriplegic, after suffering a massive, freak, stroke at the end of last year. (He is only 34)

The shock and transition has been hard on us all, but his new attitude may be the worst part of it all. Pre-stroke he was a very kind and outgoing person, but now he is extremely withdrawn, refusing to see some of his old friends, even telling some of them to leave when they've come to visit him.

Our daughter, who is six, stays mostly with her grandparents who live just a few miles away, but comes over to spend the day with us, when she's not in school, so that they can have their days to themselves.

The decision to share custody with them was really hard, but after she witnessed a severe accident, and having to listen to several fights between he and his nurses, and one between the two of us, we didn't feel it was fair for her to have to deal with this at her age.

He is hard on his nurses, to the point that there are only a few who will even come out to help with his care. He's verbally abusive and even spit on one nurse after she told him he just needed to toughen up, when he complained about her knocking the, metal (which I told her not to use), spoon against his teeth.

In his defense, our first few nurses were either incompetent, or extremely neglectful. Our
current nurses, B and T, are amazing, thick-skinned enough to put up with his garbage, but still very compassionate and COMPETENT.

I'm sorry this turned into such a story thread, but I guess it can serve as an introductory thread as well. ;/

---

Tonight, my grouchy quad (see above) tried to throw a full on tantrum with me right at feeding time (when all the boarder's horses need to be fed). I'm still not sure what set him off, knowing him, he'll probably wake me up at 2 in the morning to tell me, but at six thirty after sending K, our daughter to G-ma's house, cleaning up dinner, and working on fences all day, I was in no mood for it.

He tried to tell me what a crappy mother I was, because I let K leave without her backpack (even though she's been out of school for two weeks). I told him very politely that she didn't need it and hadn't asked about it even though it's been here for several days. Completely ignoring me, he went on about how his care was too much for us, his nurses, my mother, and I, and that we just needed to send him to Hospice care, not something he needs.

I told him as I have pretty much every day, that I'm not worried about the amount of care he needs. He's my husband and I love him, even if I do occasionally threaten to push him off the couch (totally in jest). He then jumped to how he hated me and he just wanted to be alone.

So with much screaming and a few choice words, all on his part, I belted him in his chair and put him on the front porch and went to the barn to do my chores. (I could see him from the barn, please don't think I'd completely abandoned him.)

He cussed and screamed for a while, prompting several phone calls from our wonderful
neighbors and lots of questions from boarders, though they're all fairly used to his new attitude.

He finally quieted down, and I finished my chores then came back to the house. I asked him if he really liked being alone, and after giving me a nasty look, he muttered, "No."

We both came back inside and I let him lay down in bed with the TV on before his nurse, B, came over to relieve me. I heard him telling her what happened and she suddenly burst out laughing. He yelled,"It's not funny!" and then started laughing too.

So, I'm pretty sure he's over it, but I have been informed that I'm the worst wife in the world, possibly the known universe, and that to appease my lord, and master, I will be giving him breakfast in bed in the morning.

[mugsy]

Sounds like you did what you had to do. Don't beat yourself up too bad. In the long run it may have just helped.

Edited by mugsy, 17 June 2011 - 03:25 AM.

[qbounce]

Welcome, "The Wife."
That was a very nice first introduction, and story.
Feel free to leave more any time you see fit to.
Looks like you got your groove back.
Maybe he needs this kind of therapy more often!

[Jacey]

I think you are far from the worst wife/partner ever, what you have described shows amazing patience and tolerance on your part. Please look after yourself first and foremost.

[MTB John]

I opened this thread because I assumed it would be in jest but the more I read the my heart bled for you.. Then it turn out to be funny after all so well done you and comeback anytime.

You may be the worst wife in the cosmos but I'm not your husband so your alright by me..

I'm sure you have managed a few unruly horses in your time, I don't think husbands are any different..

..I'd better ask my wife.

[Tatiana]

Breakfast in bed..lol noooooo!

My goodness....how are you coping?

Sounds like councelling might not go amiss as hubby may have some very serious issues to work through. Hes no doubt harbouring all kinds of thoughts/feelings that are making him so angry/frustrated and we always tend to'hurt'those closest to us.

After saying that you also have the right to be respected as you are not his slave.


Theres no doubt..he and you all have been to hell and back but it would be great for you all if the atmosphere at home settled and daughter can spend more time with ma and pa.

Children are a tonic to have around...

I hope things improve for you guys

[The Wife]

He's going to counseling twice a week and has been for the past few months. His therapist feels that most of his anger issues are coming from the really poor care he received from the doctors and nurses early on in his treatment.

I can't say I blame him either considering he's been dropped (onto the toilet so hard he broke his ribs, his cheekbone and his nose), manhandled, given the wrong medication, verbally abused for accidents (while I was out in the barn), and had one of his teeth cracked by a nurse trying to force food into him.

Until today we've only ever had one fight, mostly because after 11 years of marriage he knows that I put up with very little attitude (out of horses or people).

K is happy with her current arrangements and she's only really gone for (max) 2hrs before and after bed. The important thing for her is not having to deal with the medical side of Daddy's care. The initial incident and having to be here when the EMT's had to be called after Chris was dropped, have terrified her to the point that as soon as she sees one of the nurses anywhere near him she wants to leave, or go outside.

It's rough, but we're dealing.

And Chris gets breakfast in bed every morning, because before the stroke, he made breakfast every morning for me and brought it to me. (Even if I was at a rodeo, or horse show, miles away)

[greybeard]

Hello Wife,

Welcome to the forum. Your husband's very new to his condition and as Tatiana said, there's probably a lot going on in his head right now that he can't articulate.

He knows your lives together will never be the same and he may well be acting in ways that will make him cringe when he recalls them later on, but he is probably trying to give you the excuse to dump him. It would not surprise me to learn that he's doing it because he loves you and believes, at the moment, that he ought to give you your freedom by driving you away. You sound as though you are dealing with it the right way. Good luck.

[wheeliebear75]

It's not easy cumming to terms with what abilities have been lost & this new body we have to learn to live in....but this doesn't give anyone the license to act like a !

He needs to learn a more constructive way of venting frustrations than being verbally abusive. It does get easier as time goes on to not be as angry or wear the heart on the sleeve....but it'll happen quicker if he can talk with someone who is experienced in this subject. I think all 3 of you need to have some counseling; each of you are dealing with your own plate full of "Oh !" & you each need some help in dealing with it.

[The Wife]

K is seeing a therapist as well, but right now she goes only once a week. During school she has regular sessions with the school counslor as well.

I am not currently in therapy simply for lack of time, I occasionally sit in on one of Chris' but normally I take that time to go grocery shopping, or have lunch by myself with my phone turned off. To me just getting away and being NOT The Wife, or The Mom, or The Boss, is so much more relaxing than anything the therapist could do for me.

[Tatiana]

I dont understand why 'carers' do the job when they dont care?
Its terrible that he has been physically hurt by their 'abusive' handling of him.

Time out is is keeping you sane by the sounds of it

[Edinburgh Colin]

greybeard, on 17 June 2011 - 08:18 AM, said:

Hello Wife,

Welcome to the forum. Your husband's very new to his condition and as Tatiana said, there's probably a lot going on in his head right now that he can't articulate.

He knows your lives together will never be the same and he may well be acting in ways that will make him cringe when he recalls them later on, but he is probably trying to give you the excuse to dump him. It would not surprise me to learn that he's doing it because he loves you and believes, at the moment, that he ought to give you your freedom by driving you away. You sound as though you are dealing with it the right way. Good luck.

I think you may find after all is said and done, including his therapy and if you get a chance to have some yourself, that what GB has said here may be a very large part of the answer, in addition to the poor treatment by the medical folks early on which must have driven him absolutely crazy!

EC

[pinkcloud]

Boo hoo hes got sci,well you have to live with it too. Does you not having sci mean that you need to take emotional pain, sadness and become a slave to his pain? Nope, he knows what its like to hurt and to inflict the equivalent on another - thats rotten.

He wants to call you rubbish? What if your'd left the house, where you couldnt have seen if he was healthy, safe and ok. He would be crying into his cornflakes that much with regret for missing you, the spoon problem would be solved.

Call you a bad mammy hey, I feel that passing her onto grandparents is a real hard, true love for your child, putting her needs over your need to be with her. Thats the best kind of love ever, and so very very painful. And I respect you so much for managing to do and cope with this.

Bad mammy for forgetting a back pack hey? Get a grip Mr The Wife, your being a proper spoilt little brat of a man.And one day, your lovely The Wife, may just see this and leave you.

I had the worst nursing care around, loads of us here have...it really makes ya appreciate any care you get thats good. I hear you say it was bad by some nurses, well obviously not bad enough or he'd fricking appreciate you. Maybe left sitting around unwashed, undressed, in a soaking wet pair of soiled trousers will show him 'worst wife' capabilties, it wont kill him, (hes not your child or a parent or vulnerable adult/child which would not be acceptable to do too of course) after all thats what the real bad nurses do.

Does he think the care agencies sends out the best staff to abusive patients? No way...they hand out them carers with tougher skin to deal with him on his level.

With appreciation he may just become that loving bloke you met, me? I tell him straight, 'ask a doctor for depression medicine or help, talk to you nicely and you may stay' - and give him an eggtimer and say, 'thats how long you got to get ya head sorted, its not a hard decision - you want me or you dont, you do - work for it.

Edited by pinkcloud, 17 June 2011 - 11:59 AM.

[mcjane]

I agree with GreyBeard. I'm glad I was single when I got injured because I know I would have turned mean to drive someone away. He's doing it cuz he loves you. You are doing great! And the grandparents are so fortunate to have reason to be closer to their grandchild. You are a very good storyteller. Thanks.

[mcferguson]

You're hardly the worst wife ever, I think you should stick him outside about three times a day. Let him shout it all out outside. Maybe he'll even get interested in what's going on in the neighborhood and he can focus on something other than himself.

How high is his injury? Insurance should pay for a chair that he can drive himself, sip-and-puff if need be; he needs to start doing what he can on his own.

[Snakeye]

Ya, he's handling this deal like a shit and I bet you have been a shit too at times..So what?...Don't beat yourself up over it and if anyone puts a guilt trip on ya let them take over for a while and see how they make out...We all get thrown into this nightmare (victim, spouse and kids) in the blink of an eye and who amongst us is prepared or recieved training in dealing with this life..No one..Just do the best you can cause you are facing a steep learning curve, full of heartbreak, twists and turns and just when one thinks they got their arms around the situation the bottom falls out..Keeping a relationship together is very tough under these cirmustances..normal is no longer normal, it's a new normal and constantly requires us to adjust..We all spend time wondering what happened to my life?..All I know is learn to bend not break, be flexible, try to ignore crappy parts all you can and take some time for yourself...Hang in there and keep the love going..I wish you both well...

[The Wife]

We currently have a chair that he was taught to use by his PT team, but he's still very uncomfortable in it. It's very sensitive and sometimes jerks forward and scares him.

It's also not good outside because of it's small wheels and heavy weight, it tends to wobble quite a bit , something his lighter push chair doesn't do. So when he's outside, which is most of the time when the nurses aren't here, I just wheel him around to where he wants to be.

It stays in the van right now so that he can keep practicing with it at PT until he gets comfortable.

[edlee]

I guess some things are best not said.

However things work out between you,,, I wish you luck
ed

Edited by edlee, 18 June 2011 - 03:51 AM.

[Illinois Boy]

I have always had a bad temper and still give my wife hell every once in a while.....

But I always apologize to her..... And I have stopped beating on my legs and throwing and breaking phones
and remote controls [it was costing me a fortune]....

Personally, I wouldn't put up with his shit....

Good luck,

Jim

[The Wife]

I found out today that the reason he went off about wanting to go into care* is because he found out, from my mother who was supposed to keep her big mouth shut, that I'd decided to sell my main barrel horse, Rocker.

An old client of mine loves the horse, and when she heard through the local gossip that I was looking to sell some of my personal horses she called and offered me $45,000 cash for him. I don't really want to sell Rock, but I can't turn down $45,000.

Chris knows how much Rocker, and my other horse, Loco, mean to me and has always been adamant that I keep them even though they're worth the most out of our private horses. But at the end of the day I love my husband, and my daughter, more than I love my horse and I know he'd be well taken care of at his buyer's house.

Having that money will mean I can put a big cushion back in our savings which is pretty eaten up right now between medical costs and the extra help I've had to hire for the ranch, and having one less horse to keep legged up and compete on means I'll have more time for family and the ranch.

I have to admit it still kind of sucks to loose my baby though... : (

*Our insurance would fully cover any type of in-patient care, but it doesn't cover pay for any in-home care. (Makes sense, right?)

Edited by The Wife, 17 June 2011 - 08:06 PM.

[goose]

I've been reading all your posts and I can feel your pain and his too.

From what I've read, this is still in the first 6 months or so and he isn't able to move anything below his neck. His problems were caused by a stroke. I'm not sure if a stoke and a sci experience the same problems or not. I haven't heard if he spent any time at a rehab center or not.

I can tell you from my own experience that not being able to move any thing is the MOST SCARIEST thing ever. It's total loss of control physically and mentally. You feel trapped inside a non-working body. The times when you have someone else just doing the basic things for you are the hardest. You feel like screaming and crying but you know you have to put on the brave face.Once I was up and through all that, things got some what better but not great. Now, you had to face the world just to do it all over again.

I knew I'd never survive like that and worked my tale off to move anything. Once I started moving one arm, I felt a hugh sense of freedom. I could now learn to drive an electric wheelchair. Take him to a flat parking lot and let him practice,practice ,practice. He NEEDS that freedom that wheelchair can give him. It sitting in the van is not helping him or you! Once he feels confident in the chair and will use it, you'll both feel a sense of relief. He needs some control in his life. He also needs a way to vent other than his therapist. You are using this forum and your horses as your way to vent. Help him find one and then you won't be it.


Simon told of a man who adapts gadets to use playing video games. I think they cost 200 bucks. Get it before the man retires. Find a computer he can use. The more things you can find that he can do ...the better he will feel about himself...the better he will treat others. This poor man needs to feel needed and like he can still do something. You'll be surprised at what a different person he'll become. Yes, there will be more rough days...that's life.

A rehab center should have done all this. If he hasn't had any PT.,find a good one. He may gain more movement with the right help. Yall are both in a sad situation but it can be better. If his therapist has only come up with watching TV with your daughter, I might be looking for another one.

I didn't mean to be so long, but I've been there done that and it's the pits. You'll never understand his frustation unless you've been totally unable to move any thing. His ego has been shot. He feels guilty for all the change and just pure helpless. Just the smallest bit of freedom will make a hugh difference to you both. GOOD LUCK!

[isobar]

Sounds like you knew what he needed and just how to get it across to him.

[The Wife]

Chris was in a rehab center for three weeks, but they treated him really horribly. In three weeks he had six sessions and was only out of his room ten times. Then I found out that they'd been using him as a guinea pig for the new nurses, and nursing students, to put in IV's and caths.

I had a freakin' fit and made it very clear that, that crap was going to stop, then the next morning I came into find out that he'd been in a bad diaper since the night before. I pulled him out and brought him home and got him into an out patient PT program and hired a nurse to provide in-home care.

A lot of my husband's daily care is similar to an SCI. His doctors referred us to a lot of resources for SCI, since most stroke information is only for people who suffer paralysis on one side, and it doesn't really help us.

Chris really loves his PT. They normally work on trying some fine motor control, and then they do exercises to help him build and keep up his muscle tone, which is really important to him.

[pinkcloud]

[quote name='The Wife' timestamp='1308415055' post='235826']

Hi Mrs T Wife

Dont let sci ruin your lives together, it can very easily...only if you both allow it too.
Get control of the sci and boot it into the background where it belongs

This hospital experience, very sadly sounds very much the normal, and in many ways light-weight trauma compared to many, meself included. This does not however play down this treatment that was cruel, and in no way need he experience worse, if he couldnt cope with that...I truly would be concerned if he got very bad treatment - I'm sad to say it happens to children and the elderly too.He needs to undersyand it was not personal to his case - they are not fussy whom their victims are. It made me really appreciate even more ALL individual good staff members whom I make a big fuss of telling the managers and everyone I meet how great they are. If your hubby finds this too with a PT or nurse or doctor, it would be nice for him to do the same, it may just prevent this happening to others. Making positive changes will boost him I'm real sure. He could start with you and the grandparents....

I understand how awful this was and is for him and really to appreciate his high protective barrier for stopping any trouble with nurses at the first sign of trouble. Thats very natural - I seeked the help of medics to help me over the abuse - now, I trust the NHS with all me heart, I hope your hubby manages this too, trust me it takes away a lot of head trauma. You have horses, I had horses....I guess you know the pattern I speak of when I say the word 'spook'. Also its well known equestrian therapy helps...it wont help me, I got sci landing on me head from one, your hubby - hes got a chance I would wish for.

I stand by me word - no excuse to take sci out on you - not the old 'take it out on the ones closest' claptrap dont wash with me. You sold your precious horse - and still he goes on. help needed here i think, whatever that help is - only you two will know, peeps can only be pushed so far, then they will run to escape a fall of the cliffs - or fall off helpless-ley...it can be stopped, your marriage can be brilliant, if quick actions taken, to pamper to his tantrums makes a rod for ya own back, why both suffer anymore you both, he must hate being this way with you I guess?

[sh1wn]

I was very angry for a year or so after I was hurt, why I was angry I have no idea same with how I snapped out of it. Most of the time I would catch it coming on and would tell myself that I didn't want to yell and scream, that I knew it wouldn't get me what I wanted but I would still end up losing it.

It will take him some time to get used to his new life, but that doesn't mean he gets free pass to yell and scream at you or the help. I think you handled it good, let him get it out and calm down. I have heard other's suggest that when he starts in on you just tell him that is not the way to treat you and that you will be back when he has calmed down, then leave for 15-20 min and ask him if its time to continue what you were doing.

That must be some horse you have, I can understand how he feels about that. All my life my mom has had a garden, huge gardens at that. Sence I have been hurt (4 years) they have gotten progressively smaller to where this year it is only my medical marijuana and a handful of veggies. I really feel like I have stolen it from her, I have gotten all kinds of radios and told her there no reason that I can't be alone, as long as she checks on me from time to time, hell I would love a little time to myself. She is getting older and I'm starting to think it was something she wanted to scale down and me being hurt just made it easier for her. I still feel like I have taken something from her.

Not sure if any of this helps, I hope you and your guy get past this.

I almost forgot, the place he got the powerchair from should have a programmer for it and with that they can adjust most anything about how it works, maybe call them and see if you can get some one to spend some time with him and don't let them leave until your husband is comfortable with it. You can adjust it later after he gets used to it.

Edited by sh1wn, 18 June 2011 - 09:06 PM.

[The Wife]

Thanks for that tip, Sh1wn.

Rocker is a pretty special boy, it'll be hard to see him go, but as soon as I heard her offer there was no question in my mind if I would take it or not.

You've all given some great insight and advice, sorry for not replying to everyone, but I've been pretty busy the last few days.

[Snakeye]

I know how he feels. For the first two years post-injury I was an angry and bitter man. I'm suprised the wife didn't kick my ass in the street..But the past year I've worked hard on becoming content with my portion in life and mellowing out...Your husband needs to get it into his head he's not going thu this hell solo...Sounds like an attitude adjustment is in order on his part..I admire you for standing by your man...Good luck..

[megatrig]

wow! seems like just about everything that can go on is going on!!

Hmmmmmmmmm

Ok .. one of those naff statements! TIME........... BUT .. Time used productively so that in 1 month, 6/12/18 months you are both smiling happy living positive full lives!

[The Wife]

We've been living by Murphy's Law the last few months, megatrig.

Just since he's been out of rehab, he's dislocated his shoulder, broken two ribs, his nose, his cheekbone, nearly been overdosed, by one of his nurses, and nearly had his ankle snapped.

I'm pretty sure the local ER thinks I'm trying to off him, but I promise I haven't caused any of that except maybe by being too trusting.

[goose]

Something is definitely wrong with this picture. That's alot of broken bones in a very short amount of time. I know accidents happen but this many? Something needs to be done and soon. If it's the nurses , does the agency know about all this? Chris has been thru alot without having all this happen too. Yall have a serious problem that needs attention.

I know he's tall so are yall using a lift?