Weaning from son's care

[mazey]

I am hesitant to write, but need some input from you all. My son was injured in Nov. '99, C6/7 incomplete, has good upper body strength, no fingers, use of hands thru tenodesis, excellent attitude, and positive outlook. He is working fulltime, continues therapy, drives, "plays" with his friends, and is remarkable! He rehabbed in RIC, which was excellent. I did all his am care for 10 months, and stayed at his home 3 nights a week. At 10 months, we were able to hire AM caregivers. His Dad and I continue to stay at night with him. He owns his own home. He has good money available from the state for his care.
I am wanting to hire someone to stay nights with him, at least some of the time. (Incidentally, his Dad and I are divorced.) He is being resistant to this any time I have suggested it. He uses money as a reason, which it isn't, he doesn't want a stranger coming in to stay, I have explained of course, he would have the choice to pick someone as he did with his current caregiver, that he likes alot! I am sad that I don't feel like I can continue to stay as I have been, am I being too selfish in wanting to free up my nights. I have a significant other of 9 years that I like to stay with a couple nights, 3 with my son, that leaves me 2 nights to stay in my home. I provided 2 lunches a week, 2 homecooked dinners. If Something comes up to do on the night I am assigned to stay, and don't cook or sit with him I am made to feel guilty that I am not there. I do all his bills, shopping, dr. visits, meds, scheduling his caregivers, etc. I know the time I am with him he loves, I "refuel" him. I am not planning on not being there, just not assigned to 3 nights a week.
Has anyone had to make this decision? How have you helped with the adjustment, and how have you covered the shift? and what is it worth in $$. He makes his transfers easily on his own to bed, is not independent yet with turning in the middle of the night, so we get up at 2:30am to assist his rolling over. He has come so far and has done so well, I really believe this is just a natural process to start weaning away slowly at night? He was resistant to caregivers for his am care too, but adjusted well. Trust me, this has been a hard decision to make and discuss. I absolutely don't want him to think we are abandoning him. He needs us and we are close knit, this will not mean we aren't there for him. Actually, probably the quality of time will be improved. Thanks, didn't mean to get so lengthy, guess I was "unloading", thanks for any input. I work fulltime as a Nurse and this 2:30 wakeup is hard to get back to sleep with for both his Dad and I. Any suggestions are helpful. Thanks for listening......

[Scorpion]

Originally posted by mazey:

am I being too selfish in wanting to free up my nights

Absolutely not. You have to let him go sometime, even if that means he has to hire help. Family can only do so much, and they shouldn't be expected to help indefinitely with care. If one can afford attendent care, it will take a huge strain off the family relationships. Then, you can go over to his place just to visit, not to work.

In my opinion, as a C-6/7, there's little reason he shouldn't be completely independent. Unless he has a weight problem, he should be doing his own care, at least most of it. I'm a C-6 and I've lived on my own since May '95, totally independent. I was doing everything myelf while living with my folks at about 2 years post-injury.

This does not mean your son can be completely independent, but I'm betting there's a good chance he can be. I know there are a lot of us here who could give him tips if he needs some from somebody who's 'been there.'

~Rus

"We are not brave because we are free. We are free because we are brave." ~ Rich Ward (Stuck Mojo / Sick Speed)

[Scorpion]

One more thing, I think you do WAY too much for your son. Time to ween the 'kid.' http://sci.rutgers.edu/forum/images/smilies/smile.gif

He'll appreciate it in the long run. You need to exercise some 'tough love' if you ask me. Good luck, and let him know where here if he needs us.

~Rus

"We are not brave because we are free. We are free because we are brave." ~ Rich Ward (Stuck Mojo / Sick Speed)

[Jim]

mazey,

I can tell by your post that you are an awesome mother! I can also tell, you already know the answer to your question. The best thing for your son is to be as independent as possible. It is very important that he do all he can, on his own.

You remind me of my parents. They used to do EVERYTHING for me also. It's ok in the beginning, but if you continue to do everything for him, he becomes dependent on you. This prevents him from reaching his full potential.

Don't feel like you are being selfish for wanting to get on with your life. It is in his best intrest, and yours also.

You said he is still in therapy. I'm sure an Occupational Therapist would LOVE to work with him in order to make him as independent as possible.

I would bet the farm that he is TeRRiFiED to think of living life without your help. This fear is his main obstacle. Help him to realize this fear, face it, and work through it.

I would begin a conversation with him along the lines of how he would survive on his own. He probably will NOT want to "go there", but this is the way to bring out his fear. Discuss the things he thinks he can and can't do on his own. How he can accomplish the things that you do for him. What changes in his house can be made to make things easier.

When he confronts this fear, he will realize it is irrational, and that he CAN do these things on his own.

As you probably guessed, I may be speaking from experience.

Like Rus said, send him here.

Good Luck!

[SCI-Nurse]

Many people at his level of injury live alone and either do all their own care (including bowel, bladder, skin care, bathing and simple cooking) or have only part time PCA assistance (usually 2 hours once or twice daily). There is no reason that he needs to have someone with him at all times as long as he has a phone he can use in case of emergencies. He should be able to turn himself in bed as well and should work on this with his PT or OT, or you may want to look into a turning mattress (not as good as turning).

You may want to talk with the outpatient nurse at RIC for some other ideas. As a nurse & mother you may be "nursing" him too much. He needs to learn to do these things for himself, and developmentally he needs to be moving away from such dependence on his mother. He should be paying his own bills, scheduling and hiring his own PCAs, and taking care of all other aspects of his care and life at this point. You can still be with him often, but this should be as any mother visits a son of this age, not as a direct caregiver or "life manager".

I am sure others on this forum can tell you their own stories, but this is from my experience with many mothers who often want to do too much for their adult children and protect them to the point of smothering. Be his mother...not his keeper.

(KLD)

[mazey]

Thanks so much for the responses. They were helpful....I need to email you about helpful advice you would have to make things easier for him in his search for independence. I really appreciate your taking the time to resond. Linda

[CLC379]

yep he is very comfortable in this situation. he may get mad & frustrated for a while and he may never thank you for it, but weaning time is right. will be best for everyone.

Want to be involved in reasearch. like a guinee pig

[kate]

Good grief! Sounds to me like he's got a pretty sweet deal--somebody to deal with all the unpleasant little hassles nobody (ab or da) wants to do. Here's what I think: we who aren't injured would give just about anything to somehow make sci endurable. The problem is that WE CAN'T! It's either endurable or it's too much to bear, and it's the INJURED person's job to figure out how to live.

I'm speaking of course about what has to happen after the first months of crisis and shock are past. During that time, anything goes, nothing is too much to ask. BUT--years later?

I think you're being used. A guy who can work and "play" and drive himself around can sure as shortcake figure out how to roll over in bed!

I'm glad for your question, because it makes me ask myself what things I'm doing in the name of kindness and "helping" that really serve to keep me from feeling so damn guilty about having a functional body. This is complicated stuff, yes?

Kat

[marmalady]

Hi, Kate

Welcome to the forums! "Grace and humor" - love it! If we all could only paste those words in our brains permanently!

_____________
Tough times don't last - tough people do.

[offthahook]

Originally posted by SCI-Nurse:

Many people at his level of injury live alone and either do all their own care (including bowel, bladder, skin care, bathing and simple cooking) or have only part time PCA assistance (usually 2 hours once or twice daily). There is no reason that he needs to have someone with him at all times as long as he has a phone he can use in case of emergencies. He should be able to turn himself in bed as well and should work on this with his PT or OT, or you may want to look into a turning mattress (not as good as turning).

You may want to talk with the outpatient nurse at RIC for some other ideas. As a nurse & mother you may be "nursing" him too much. He needs to learn to do these things for himself, and developmentally he needs to be moving away from such dependence on his mother. He should be paying his own bills, scheduling and hiring his own PCAs, and taking care of all other aspects of his care and life at this point. You can still be with him often, but this should be as any mother visits a son of this age, not as a direct caregiver or "life manager".

I am sure others on this forum can tell you their own stories, but this is from my experience with many mothers who often want to do too much for their adult children and protect them to the point of smothering. Be his mother...not his keeper.

(KLD)

Very true. I wanted to break away after I was injured, but it is a fine line between tough love and being soft. Man, it is tough; I'm glad I'm not a mom. I am glad I have one (and a step mom, too
http://sci.rutgers.edu/forum/images/smilies/biggrin.gif )

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