Need advise, am I hurting progress of my SCI husband

[cheesecake]

Hi Nari~
to you for coming here and even asking the question, that is a huge step. It sounds like both of you are ready but are also afraid of the consequences. I have found that fluid befoe getting out of bed, as well as having graham crackes before getting up helps. One plain graham cracker does the trick.

Trish says it well, you find your balance over time. Everyone is also correct that you need to "play" with your schedual. Rehab centers teach the bowel program in the a.m. but it can also be switched to evenings when you have a bit more time. Many folks who work do an evening schedual vs a morning schedual. I think the main reason hospitals teach morning is because they have the staffing then.

You might want to change the cathing on a weekend as well. That way, if there is a problem lack of sleep won't be an issue.

Keep coming back and asking questions. No one is judging you just trying to be supportive with direct answers.

This does get better and easier, I promise.

[NARIDEVOLI]

Thanks. I know we will get this figured out. We are both intelligent people who still are in shock, I think. I still can't believe this has happened.

[SCI-Nurse]

Cathing for men is easiest in a semi-sitting position. Does he have a hospital or adjustable bed? That makes it the easiest (and also can help him be more independent in turning, dressing, and doing his own ROM too). Otherwise, we teach patients to sit up with their back propped up on the head of the bed to cath. We don't use mirrors or prism glasses for men cathing themselves unless they are in a halo or other type of cervical brace that prevents them from bending their neck to see what they are doing.

TEDs, an abdominal binder, fluids before getting up, and judicious use of medications can help with early AM dizziness, as can sitting with the head of the bed up for 5 minutes before transferring.

(KLD)

[Tiger Racing]

Originally Posted by NARIDEVOLI

Thanks for all of your input. I must say, you all make me feel like I've been hurting him instead of helping him. THANKS A LOT!

You're welcome.

Did you just want reassurance that you're doing the right thing or did you want honest input? What you got is honest input and in time, hopefully, you will be honestly grateful for it and will drop the defensiveness.

I have only been doing what I thought I was supposed to be doing. Nobody has said different, until now.

Seriously? Where was your husband rehabbed? For how long? How was he injured and have you had trouble with insurance or other funding to do whatever rehab and therapy that might be suggested for his injuries? It seems very, very odd that nobody has ever suggested to either you or your husband that he should learn to do everything that he can for himself. Not a single therapist, nurse or doctor ever suggested that someone with your husband's level of injury could be independent? Do you really need to hear that from an outsider? The concept isn't inherent?

Keep in mind that my guy had a goal to get back to work at six months post injury to provide for his wife and 3 kids. He has done that. He drives and visits customers on his own, even as far as 3 hours away.

That's great. Assuming that his injuries were not such that this goal was unrealistic, then it's wonderful that your husband was able to reach it. So if he could push himself this far, this quickly, then what is stopping him from pushing further?

I assist him every morning to make sure he is at his desk at 8am. With my help it takes 2 hours on bowel days to get him ready. I would love someone to tell me how he is going to do that on his own. (I guess if he gets up at 4 or 5am...) I feel I am helping him so he can work, so we can live! Isn't that important?

Of course providing for your family is important, but how is pushing for independence contradictory to that? And, yes, at this point your husband may need to get up at 4 or 5 am in order to be ready on time, but it will get better over time. How else is he supposed to become more efficient if he doesn't work at it? The longer you do things for him, the longer it will take for him to learn to do things for himself.

Kate, did your husband return to work at six months post???

Don't snap at Kate. All she did is answer your question based on her experience and knowledge.

Any advise here would help. We are very ready to try and make him more independent.

Good. Then don't bridle at those agreeing it's high time for you to do just that.

One of our biggest problems is that his employer is very non-supportive and he feels he is under the microscope. One slip up, one day late and we're afraid he will be fired. Then we're in trouble.

Have you spoken to his employer about this? Did you have a good relationship with his employer before your husband's accident? Is the lack of support based on ignorance of the extent of injury and what it takes to come back from that or is it a lack of patience with the same? You don't say what your husband does exactly. Could he make changes in his schedule overall or in how he does his work to accomodate his disability either for the short term or the long haul? Would discussing this with his employer reassure him that some delays and accomodations will likely be temporary and adjusting for that will ensure that a valued employee will be around for awhile and a new employee won't need to be found and trained? Turnoever is usually rather costly for employers. Reminding your husband's boss of that may help.

We have a huge 3500 sq ft two story house on an acre of land. My guy built our pool and landscaped our yard and has always done everything. It's too much for us now and we have to sell and buy a single story.

That's got to be hard. It sounds like you spent time making this house into the home you wanted and moving will certainly be difficult. I was fortunate that the house my family lived in when I was first injured was almost completely accessible already. Ramping the one step onto the front porch and widening my bedroom door were the only immediate concerns. Well, the laundry room had a step down into it and couldn't be functionally ramped, but what 18 yr old wouldn't be happy to have an excuse to avoid laundry?

know we will get this figured out. We are both intelligent people who still are in shock, I think. I still can't believe this has happened.

Your husband isn't even a year post. Of COURSE you're still in shock. This is an awful, awful thing that you have to come to terms with. No reasonable person would expect you to have all your ducks in a row so soon. All anyone here is responding to is your own suggestion that doing things for your husband that he is technically capable of already may be slowing his return to independence.

Think of this like another type of caregiver, a parent. You know how hard it is to stand back and let your kid learn to tie their own shoes, dress themselves, pick themselves up when they've fallen down... but as a parent, you have to let them learn to do these things on their own or else you are not doing your job. The more practice a kid gets at these things, the faster they learn. Same principle at work when it comes to rehab. I'm sure it's damned painful to watch your husband struggle, but as many others have said, in the long run, you'll both be glad that you let him do it.

Now that I've given you my parent/child analogy, let me say something that many here may not agree with. I absolutely believe that if there is any way around it, a spouse should NOT be the primary caregiver for their own spouse. I realize that there are no other options for many based on financial or social circumstances, but even in those cases I stress that the spouse with the disability should do everything they can for themselves to avoid their mate being placed in a nursing or "parenting" role. There is enough stress and difficulty in maintaining a relationship in these circumstances without the added strains to marital intimacy that come when one spouse is performing bathroom care, etc. Just as becoming parents can alter how partners view each other sexually and intimately, so can a SCI. It's accepted that the person with the disability has to adjust their own self-image and sexuality, I don't think it's at all unusual for the spouse to have to make an adjustment. Performing a bowel routine isn't the least bit sexy and putting that out of one's head and seeing your mate as a sexual partner later that same night can be difficult. If that particular type of difficulty can be avoided, then I highly recommend it.

C.

[shelley]

Here's the other side of the coin. My husband is also a c6/c7 ~ although complete instead of incomplete. He has fairly good use of one hand. His arms are pretty weak. There is no way on earth he would be able to turn himself through the night, or sit up and be able to do his bowel program on his own. We don't cath through the night ~ before bed, and in the morning, but he also wears a night bag and voids into it through the night. I wake up once through the night to turn him. A pain, yes, but so far he hasn't had a pressure sore. He's 3 1/2 years post. He was at rehab for 7 months, and was so sick the whole time he really didn't get much out of it. He has basically been the same since he got home. When he's up in his chair, he pretty much always feels like he is going to pass out ~ no medication, water, crackers before getting up, stockings has ever helped that.

If your husband is going to work everyday, I can understand why you would want to help him as much as you can in order to save his energy for going to work to support your family.

Like everyone said, find what works for you. I would love for my husband to be more independent. He would love to have more of a life since his injury. Unfortunately it just hasn't worked that way. There are lots of times I read on this site what other people who seem to have a similar injury to Sean can do, and find it a little depressing, but I have to remember ~ Every injury is different!! There is no getting around that.

Ideally everything would work like KLD and others say, but I have learned that some things (a lot of things) just don't happen the way you want them to. And comparing to other people is sometimes a mistake.

Having said that, I am always worried about what would happen to Sean if something happened to me. That is a worry that many, many people in this world live with unfortunately.

Good luck.


Shelley

[marmalady]

Originally Posted by shelley

Like everyone said, find what works for you. I would love for my husband to be more independent. He would love to have more of a life since his injury. Unfortunately it just hasn't worked that way. There are lots of times I read on this site what other people who seem to have a similar injury to Sean can do, and find it a little depressing, but I have to remember ~ Every injury is different!! There is no getting around that.

Ideally everything would work like KLD and others say, but I have learned that some things (a lot of things) just don't happen the way you want them to. And comparing to other people is sometimes a mistake.
Shelley

Very well said, Shelley!! Everyone IS different; in age, level of function and what they can do with that function, age, general health, 'mind-set', type of rehab and circumstances of rehab.

Yes, ideally, a person at a certain level 'should' be able to this or that; but I'd rather see everyone support the individual circumstance, rather than group everyone into a category. Perhaps there are things a person can do more independently; perhaps they were never taught; perhaps they were too ill to take advantage of skills that were being taught; perhaps age, or home set-up, or other illnesses limit the amount of independence. Is it up to us to judge, or just to give support and help without judgement?

I'm going to go climb under my rock again; this was JMVVVHO.

[ergvepeog]

Hi Nari:

Every case is different.... the people in this forum have lots of experience with what you are asking about. It's sad that the rehab people never emphasized the inportance of independence to you and your hubby but that's water under the bridge.
My husband also went back to work within 6 months after injury. He's 62 now and doesn't move quite as fast as he used to. I help but not as much as I did when he first came home. Even though it takes him a long time to do some of the stuff, I know that he has to do this... my concern is... what if I was unable to care for him??? That thought alone prodded me to encourage him to do the stuff himself... If we have to get up a couple of hours early then so be it. I work full-time and so a full night's sleep is essential. Don was getting up in the night to cath and that lasted for about a year and now he caths before bed and puts on a condom cath and a bag and that gets him through the night. You should check with his urologist to see if this might be a solution...
I hope you keep coming back here for the support and answers... I know that SCI sucks but CC makes it bearable!

Sieg

[Obieone]

Hello Naridevoli ..... I'm sorry this has happened to you but very glad you found us. I'm afraid you're going to need us probably more than you know ! That being said you will find a wealth of diverse info and opinions here .... but most importantly support ! What Shelley and Marm have said is so true but there is also a grain of truth in what everyone else has shared with you as well .....so please keep an open mind.

I do get where you are coming from regarding how much we should be doing to "help" our mates. My husband Bill was hurt cutting wood almost 9 years ago now and I struggle with the issue still ! Unlike your spouse he is not working at all but does do some civil service work voluntarily in our community which helps to keep him sane but with the drugs he is on even that is getting difficult. He is going to be 60 this year and is a T5 complete injury but has had many many health issues in the past 4 or 5 years that makes it nearly impossible for him to work. Its such a blessing your spouse has been able to get back to work so soon and here's a to his employer for being non-supportive! My husband did have a job working as a dispatcher for a trucking outfit after he was injured but when he encountered all his other health issue his employer had to find someone else ... we live in a very small rural area so employment opportunities are very limited . We've opted to stay here because all our family support is here right now so unless that changes that is more important to us right now. I do work and Bill gets a small disability pension but like you we have a rather large completely wheelchair accessible home that we built soon after Bill was hurt .... and which we now can no longer afford to keep ..... so it is for sale. We would have lost it long before now if it hadn't been for the generosity of our families ..... we have been very fortunate that way! Three of our 4 children are out and on their own now so I have lost my helpers for maintaining the yard etc.. Bill did all the maintenance not only on our home but on our vehicles too ... that was a huge adjustment. Bill is mostly completely independent for his daily care physically except for the odd glitch .. emotionally ... thats another matter ! Because he has an ileostomy now he doesn't have to contend with a bowel routine however he is currently tending to some pressure sores that he has developed. He is terrible for not checking his skin and relies on me to do it for him ..... now that may seem like a small thing to do for him ... but I know he can do this and for whatever reason he just doesn't do it. So sometimes I get uppity (enter the resentment factor) and just won't do it either ...... so where does that get us ...... exactly where we are at .. nursing a new sore on the exact same spot he has had a flap surgery done changing dressings .... and having to live with a certain amount of guilt for not being vigilant .. yadda yadda yadda .... I think you get the picture!

I was trying to do too much .. wishing and hoping to keep it as normal as it was before Bills accident ...... until finally I had to have knee surgery this past fall ... and what a wake up call that has been ...... I now have made up my mind to take better care of myself but have alot of undoing to do to get myself back in shape .. not just physically but emotionally as well .... so I guess what this long winded story is really all about is to support what others have already said here .... your mental and physical wellbeing is really really important too. We do understand how hard the adjustment is to your new normal and how hard it it is to say "do it yourself" ..... or not answer at all ...... no getting around it this SCI thing is just hard ... but we are here to help you through it ..... use us ... you will not always like or appreciate what you read but it will always be real ... and you can't get that anywhere else because we've been there ... we get it !



I wish you all the best .... stay strong..... visit often !

Obieone
You should know this advice comes from someone who used to cry .. everytime (for a long time and sometimes even still) whenever she went to pee because she could .. just like everyone else ...... and he couldn't {{{{{hug}}}}} !

[Obieone]

Originally Posted by NARIDEVOLI

Thanks. I know we will get this figured out. We are both intelligent people who still are in shock, I think. I still can't believe this has happened.

I also just wanted to say ..... yes absolutely you are still in shock .... I'll let you know when it wears off .... a sense of humour kinda helps too !! It will get better ... it will get better .... don't beat yourself up .... you're doing the best you can ......

Obieone

[darkeyed_daisy]

Hi Nari..

I realize my injury is quite different than some of the others who have posted here but the neurosurgeon gave my mom some sound advice when I left the acute hospital for rehab.

He told them (my mom and dad) "you can make an invalid out of her if you want to but I would suggest you allow her to be as independent as possible". In the beginning, some things took me triple the normal time to get them done. At six months, your husband and you have not had enough time to adjust to this horrific change. I think you should start little and work forward. I know you want to help him as much as possible but if he can do things himself, he really needs to learn how to do them the best way on his own. It really is trial and error. After 17 years, I have most daily living down to a routine. Fear of new situations is usually much worse than the new situation itself. It may be quicker and easier for you to do things for him but you will eventually wear yourself down. You have children to take care of also. I think Tiger racing's analogy is accurate....as parents it is hard to watch our children fall or not succeed but they need to try to learn for themselves....

I wish you luck...this is a very hard situation.