17 replies to this topic

[fiance]

We were supposed to be married in February, but my fiance was in an accident and is now paralyzed from the chest down. I am thankful everyday for him and so glad he still has his mind and arms. We have our ups and downs, but I seem to be doing everything and I feel he has turned into a selfish man. Am I wrong to think this?
I work full time, come home, feed him, put him on the toilet hoping he goes, wipe him, put him in shower, put him in bed, etc.
He refused to put the supossitory in him and refuses to wipe himself because he does not believe he can reach or turn and balance. Currently he holds himself up for me to wipe him. Unfortuately it is not often he can actually go on the toilet and I end up changing his diaper. The whole thing is degrading and he cries often.
I am worn out. The accident was in December and he was released from the hospital with a bed soar and no help. He is on Medicaid and they now have denied the wheelchair and the catheters.
Today I ran home from work to change his diaper. It was my lunch hour, but I am becoming tired and exhausted.
Plus he is always in a bad mood.

Advice please

[dancin' johnny]

I don't think you are wrong to think he is selfish but I do think he doesn't realize that he could be completely independent at his level of injury. I'm afraid the more you do for him the less he will learn to do for himself.
It may be difficult because he is so newly injured and most possibly still coming to terms with himself but the sooner you apply the 'tough love' it takes to make him see this the better.

[mellowgator]

dear finance,

why was you boyfriend turned down for a w-c and catheters? i don't think you should stop with that. i was turned down for medicare at first and i think most of us are. so please reapply. does this mean that he doesn't have a w-c? if this is the case there's not much he can do for himself. he should be able to call and get things straight with medicare since he is home during the day.

if he has a w-c and is able to get into the bathroom. i think it's disturbing that your fiance is requiring this amount of care. he should be able to take care of himself and drive and as a para even return to work. there's no reason why he can't be a contributing member of society. if he has just rolled over and wants to be cared for like a baby this is indeed a whole issue within itself. your feeling are valid.

if he has tbi or other health issues then that's another story. i think with the bed sore he should stay in bed in order for it to heal. if this is what is going on you need to realize this is just temporary until he is able to get up and get going. i would think if this is a stageable sore he should have home heath care nurses coming in to treat it and change dressing etc.

however if he is home alone and has a bowel accidents. he needs to lie on a chux and then have access to wetones, gloves and a mirror and a trash bag. that way he can clean himself without you having to come home. ideally he should be able to do his program over the toilet. it takes some of us longer to get a good program. i use enemeez which gives me results in 10 minutes and i go every mwf. this works for me but everyone is different.

with all the above said your finace is still a new injury and it's a very hard adjustment. those with good attitudes will fair much better and quicker. hopefully your man will realize he can be miserable or get on with his life. it's his choice.

best wishes and welcome to the forum.

mellowgator

[Simba]

It may appear he is selfish but without having the right things to do what is necessary it will be impossible to regain some independance for himself. You do have a right to feel the way you do, certainly you are under a massive amount of stress which could be alleviated through getting some of the main disability things put into place. Sound like you really need to get some more disability aids & equipment. He is newly injured and it will take a significnt amount of time to not only come to terms with his injury but also to re-learn everything he will need to do in his life.

It is obvious you are working because you have to. Is there no-one else that you know who may be able to assist in any way by dropping in during the day and helping out to relieve some of the pressure on you? Routines take a long time to get properly established and need to be kept constant as much as possible. His refulsal to take the suppository I guess if he chooses not to take it then surely he is entitled to make that decision - medication will not agree with everyone and it comes down to choice what you use (depending of course on the reason why he has decided not to take it).

What was the reason why they denied wheelchair & catheter? It is a very difficult situation for you both and you really need to get some help either through someone you know or through your system. He has a good chance to learn to live with his disability if there is proper support & equipment supplied being a para he shouuld be able to learn to do quite a lot of things for himself. How was he injured? as I think the comments above form mellowgator are valid and I second the idea that something else medically could be aggravating the situation and needs to be looked into. What medical proffessionals are involved, have you talked to them about addressing some of the problems and putting the right things into place?

I really hope for both of you that the situation will improve and get more manageable.

[Gabi&George]

In AZ every hospital's Social Worker/Case Manager is supposed to organize everything the patient will need to make for a safe discharge to the home. This includes special bed/mattress, wheelchair, catheters, ostomy bags, a caregiver and if necessary, visiting nurse plus more. If your insurance doesn't cover it they find programs which do. In my husband's case, having been diagnosed with depression it included psychological counseling which really did help. Sounds as if your fiance may be suffering from the same.... and remember, it's an illness which needs treatment, not a frame of mind. Can you bring it up with his PCP?

The Social Worker should also be able to help you find financial assistance programs. They gave us a list.

It could be difficult for you to get information though since you aren't yet married and the whole country seems to be into "privacy protection" like I've never seen. Even as a wife I had to get his Medical Power of Attorney for sometimes the simplest requests for information. I suggest you get one also. It sounds as if your man doesn't care enough yet or may be too embarrassed to seek help, (that male macho thing you know?), so you may end up with even more responsibility.

Not to scare you, but please research bed sores. They can lead to huge problems if not caught early and stayed on top of. George was released with a Stage II. Even with a visiting nurse and physical therapist 3X weekly it progressed to Stage IV very quickly and he was back in hospital for surgery repair. The proper bed and mattress would have probably prevented that, but how little I knew in those days!

All the best for finding the support you need, please do know that it is out there, somewhere, and that things do get better. Gabi

[sh1wn]

Has he had any rehab yet? If not you really should look into getting him into one.
There is alot he can do for himself if he has arm movement, he may just need to see others do it.

As far as the attitude problems, its probably going take some time, one thing that may help is to tell him that its unappropriate for him to treat you that way, and that things will go alot easyer without the BS. Also try to not take things he says personally.


One thing for sure as long as keep doing stuff like coming home on you lunch break to help him he will have no need to learn how to do it himself.

[jscott92064]

I thought about you all last night after I read your post. My husband's level of injury is close to that of your fiance's. He too had a tough time with his bowel program initially, transferring, getting dressed, etc. That was because his core muscles were not very strong and he had to learn how to balance and work with his new body. I was fortunate in that I did have some help, but I also had to do a lot of diaper changing and bowel programs myself. Had he not had all the 1st year complications, I think he would have been closer to independence in 6 months after his injury.

My guy was depressed too - had a lot of suicidal thoughts. Didn't matter how much I told him I loved him, was still attracted to him, yada yada yada. I think he had to hit his rock bottom before he could come back to being happy.

I made sure I scheduled time for myself and he was aware of this scheduled time. So he could prepare himself --I would be gone, but yes I would be back.

We were fortunate too in that there were many neighbors who made themselves available to him --especially the men --I think he needed all the male guidance he could get!

It was scary for him to learn to be independent. We were able to introduce him to another para and that helped alot --a one-on-one guy thing.

Maybe your rehab facility has a program --ours has a "men's group" that meets every week.

While it might be hard for you to get him there, maybe you can go yourself and get some tips. Alsomaybe you could meet someone there who may do a house visit with you. Once my guy saw another guy being successful as a para, it helped alot.

Hang in there --it does get better.

[fiance]

Thank you everyone for all the advice. I again had a talk with him last night and told him he had to do more. I tried to practice with him on the toilet but he still could not balance and could not wipe. Next time I change the diaper I will assist him in cleaning himself. Mellowgator had a wonderful idea.
They released him from the rehab center without any information. The out patient therpy has been difficult to schedule around my hours of work. I was paying a lady to take him, but now she is busy and cannot. I did sign him up for county transportaion and I am hoping he will schedule and go to therapy. Medicaid will pay for 3 times a week.
He had no insurance which is why he is on Medicaid, but our county is Medicaid/HMO. We have had every problem under the sun with them. I am fighting for the wheelchair and hope my fight is strong enough for both of us. I wish I could get a wound care specialist but they will not pay for it. I took him to the hospital for the wound to get checked out and they were clueless and only said to use the antibiotic.
I know the temperpedic would be ideal, but I cannot afford it on my salary alone. A friend is going to send an air mattress so I hope it works. I really just thought the hard part would be him adjusting but it is obvious that fighting for the supplies is more difficult.
Thank you to everyone for listening to me. I as always could use the advise

[aberonieduderoo]

balance is the key, I honestly dont know how long it took my man to get it down but it is VERY difficult still for him. At this moment he does his bowel care in bed on pads, its the easiest for him, he has a miror and all the supplies ready and he can do it himself this way. we are working on the toileting.... I think the key is going to be finding a big/sturdy enough chair... not just a comode.
as for the 'helping' with things, sometimes its a time issue, if we need to be somewhere I will help him wipe and get ready, however, when we have time he gets ready and cleaned up on him own. if it were not for his sister telling me not to 'baby' him I may still be, and man does that ever take alot out of you!
I think rehab and learning (for BOTH of you) is imparetive!!!!!!!!!!! you BOTH need to find out what works and the only way to do this is by pushing eachother, yes its uncomfertable and SUCKS sometimes but its the only way he and you will know if he can do it on his own. TOUGH love goes a long way...
good luck and hang in there, love will pull you both through!

[mcjane]

I am T 5/6 complete and I live alone and do everything myself. The case manager at the rehab hospital handled all the paper work and I had Medicaid before I ever left the hospital. Someone has been negligent, or else he has too much money, insurance, or property to qualify for state benefits. Two years post injury you change from Medicaid to Medicare, at least in Florida I know that is true.

This life changing event is extremely hard to deal with and I was thankful that I was single when it happened because I know I would have gotten mean just to run my beloved off so they wouldn't have to live with it too. Thank goodness my sons were there in the first few months of adapting to the lifestyle, but when the doctors told me my sons would have to help me with the toilet and bathing I told them I'd rather throw myself under a bus. I learned quick. You do what you have to do. Don't bitch about the cards, just play the hand you are dealt.

The bowel and bladder program is a big fuss about nothing much. My son has a friend who uses a catheter because he has kidney stones and he said it makes him feel bionic, pissing is for sissies, he says...lol. Doctors are basically drug pushers and they insisted I needed to take laxatives or suppositories...until my diarrhea proved them wrong. I don't take any narcotics or any medication at all, except beer, so constipation has never been a problem. I am on and off the potty in no time at all. Gloves on, leg spreader in place, scoop poop, baby wipes to clean up. No muss, no fuss. Sometimes I do the catheter while I'm on the commode but usually it's in bed since it an easier transfer. I do have bladder issues and wish that Medicare would cover the cost of pads and Depends but that is a luxury I have to afford myself. They are great products and wick the moisture away from your skin and keep you remarkably dry. Otherwise you could be dealing with skin tissue breakdown. I don't like the idea that I wear diapers....but piss happens. Deal with it.

[aedmon8793]

My fiance is a c5/6. He has no real use of his hands (cant make a fist or close his hands) and the BEST thing we have done is apply for a rolling shower/toilet chair. This has a large hole in the seat, he undresses and I help him sit in it. It rolls over the toilet.
From there he purchased a small rectal stimulator for quads off of a medical supply site for pretty cheap.

I put him in his chair over the toilet, help him get his stimulator on his hands, put some lube on it, and he just calls me when BP is finished. The chair is high enough off of the toilet and the shower chair and side handles so he cant fall as he leans to try to clean himself. If he has trouble wiping, I do it. This is a great system for us as for a while we were doing BP on chucks in the bed and I had to do a manual stimulation. (it was awful). I feel like so much progress has been made and it's also good for him to feel more in control of this issue and have his privacy.

Try to encourage him and yourself when things are hard. That's the only way to get through. When you cant find anything to feel positive about think about the fact that it could have been a worse injury on a higher level, or a brain injury. His working hands and legs would do him no good if his brain couldnt think of what to do with them.

Good luck!

[corysmom]

Hi. I have a 35 year old son who wants to learn to do his own bowel care. He's got good strength in arms, and is otherwise independent. So far, he's been doing b.c in bed, but it's getting to take longer and longer (3 hours plus). What is the best sort of self propelled commode? He's about 6 feet tall and quite thin. Right now he has some pressure sores on his but, hope that doesn't interfere. I'm hoping for suggestions from those who are 'in the know' through experience. Thanks.

[isobar]

He should have received Occupational Therapy which assesses and teaches a person all the basic skills they need to perform their daily living routine ..... showering, toileting , cooking and the like before they are released from a facility. Hopefully two things will happen he'll get tried of having those accidents and get tired of having to depend on you for his needs. Look into getting an CNA , if not your relationship could suffer a lost suffer strain and breed resentment. He needs to be more responsible for his daily care ...... how many roles do you have to play? People get tired ...... you're only human and so is he. He needs to understand the more he does for himself the greater his self worth , his independence and all that comes with it. He has to grow.

[bongorum]

That man should worship the ground you walk on for what you are having to endure for his sake.

In the beginning, I was no different from your partner, depression had sappped my will to live and any desire to accept much less improve my condition by attempting to become more independant, leaving my wife a veritable slave, who had to shoulder a burden quite similar in kind to what you are presently bearing. Eventually though, when I reached a point where I could look beyond my myself and my personal struggles, I discerned how very difficult I was making things for my dear wife, and how insensitive to her own troubles I was being. It was at that point that guilt eclipsed my every other feeling and I fell in love with her all over again. I there and then resolved that no matter how horrible I felt inside, I would do all I could to alleviate her load, and if that meant doing much more for myself, then so be it. My level of injury and your boyfriend's seem very similar from what you've described, nevertheless, I shower on my own, deal with my own bowel issues, completely groom myself every day and do my own transfers. I suspect he can do most if not all of these things as well himself. Perhaps, some tough love is in order, but be careful how you apply it; measured doses might be best, though only you will know for sure, and of course good luck.

Edited by bongorum, 24 March 2012 - 12:30 PM.

[qbounce]

Fiance hasn't been back here since 10 days after her post last year. More than likely, she already heeded her own advice and got the hell out'a dodge.

Corysmom, I have a Mariner self propelled, roll-in shower commode chair by Invacare. It works well enough for me, although it is a little cumbersome.
Also, if your son has a suppository inserter and a manual digital stimulator, both of those items can be found in the online Sammons Preston medical supplies store.

Another thing that has worked even better for me is getting rid of the suppositories all together and using ENEMEEZ instead. My programs were taking 2-3 hours with The Magic Bullet, but now it's a 1/2 hour to 45 minutes, maximum. Yes, they cost more, but getting in and out of the bathroom in a somewhat comfortable time frame is well worth the added expense, to me.

Lastly, If you really want others to better see your post, it would be worth it for you to start your own thread.

[wangqi]

there might be some reason he do not want to be independent. is he got too depressed?

[corysmom]

Thanks qbounce.

[Rolilancou]

Another thing that has worked even better for me is getting rid of the suppositories all together and using ENEMEEZ instead. My programs were taking 2-3 hours with The Magic Bullet, but now it's a 1/2 hour to 45 minutes, maximum. Yes, they cost more, but getting in and out of the bathroom in a somewhat comfortable time frame is well worth the added expense, to me.

Lastly, If you really want others to better see your post, it would be worth it for you to start your own thread.

Oh wow, I hope ENEMEEZ work like that on everyone. I struggle every time I have to help my fiance with his BP, it takes him something that feels like an eternity (3 or 4 hours aprox) and with me having to go to work the next day early in the morning it's getting to me so I've been wanting to look for other alternatives to introduce them to my fiance and maybe he can try so we don't have to be awake til midnight twice a week.

Thanks for this comment/advise qbounce