15 replies to this topic

[skinnylatte]

Hello my friends,
I am in need of some virtual hugs and encouragement today.
I work a super demanding, high pressure job in the media in Washington, DC. (I only say that so you realize where I'm coming from)
My husband works from home. He's a C5/6 quad, independant once he's up. We cannot afford to pay for any caregivers currently, on my income alone, and I make too much to qualify for any assistance. So... I do all of the care stuff.

This morning was a bowel care morning, and apparently after I left, something a little "extra" came out. Hubs called a home care agency to come out and help him get cleaned up. We are going to have to pay a lot of money for it, out of pocket. He didn't even call me to tell me anything had happened. I only knew because the agency mistakenly called my cell phone. He had to wait for 4 hours for them to get there! Then, they took 2 hours to clean him up!

I'm sitting at work, so upset! I understand that he didn't want me to have to worry about it, but I would much rather just go home and handle the situation and work from home the rest of the day. My work has been very understanding whenever I've had to step out to help him for other reasons. So, I'm mostly heartbroken that this happened in the first place. But, I'm also a little angry that he didn't a) let me know and discuss with me how to handle it.

I am admittedly a bit of a control freak. So, yeah. But really, I'd much rather come home and take care of him right away rather than him waiting in that mess for 4 hours and having to pay $$$ for it!

I can't even focus on work now anyway...
My husband is a super supportive, amazing man. He's a total class act. And I KNOW that he did this just to protect/not worry me. But... still, I'm upset? Help me deal with this. I don't want to be upset!

[kjm465]

Hi Skinny,

HUGS!

Sounds like you have a super considerate husband who was only trying to help you. It sucks when our husbands try to do stuff to help us out, and it just ends up creating more stress. Mine sometimes does the same types of things...he will lay in bed in pain for hours rather than waking me so he can turn. No matter how many times you say that you don't mind, they don't want to burden us.

I hope you are able to figure this out. I'm also glad you have people at work who are understanding.
K

[allis53ca]

"But, I'm also a little angry that he didn't a) let me know and cool.gif discuss with me how to handle it."

......um...because ure not his mom.....i was married to you.......2 times...and once to your altered ego

[guido]

Agreed K

Skinnylatte, it's a sweeter problem than a selfish pig-headed violent husband. Consider yourself in his position, and you'd probably do the same once in a while. Because you'd want to give you a break too. Keep it in perspective, breathe and let it go. Sounds like what you have is good and that you both know it. Nice thing!

[qbounce]

How often does he call you at work to help out with his issues? You say your work is very understanding with everything. But, I noticed you're both engaged. Does this mean you've been dealing with your fiance's problems for maybe a year or two? Who's to say that your work might eventually call you on your personal time taken off? And lastly, he knows how you react when he's had issues of this sort before. That's probably why he didn't call you this time. Of course I mean that he doesn't want you to worry about him, and you shouldn't have to when you aren't home.

Maybe you both should set aside a small amount of savings per month for safety reasons in case this sort of thing happens. This way you won't need to worry about him if he needs some kind of assistance while your at work. And he'll feel more independant because he'll be able to take matters into his own hands when necessary.

[Bob C]

My heart goes out to you, and you are an angel. However, this may be the wake-up call you appear to be in need of. If you have taken it upon your shoulders to be you hubby's sole caretaker, what if something happens to you? I have seen situations like this that became instant catastrophes when the sole caretaker got ill or suffered a serious accident. You need to give priority to developing a backup plan to be able to step in during situations like this or if you do become incapacitated. Second, you are headed for burnout without relief. I have lined up 3 people who provide my needed help from time to time, and are available for emergencies. I can pay them quite well and it is only a fraction of what agencies. They know me and how to deal with my needs. One is a former nurse tech who is now a stay home mom but enjoys staying involved, another is a semi-retired florist who I trained, and the third is a retired neighbor who does a lot of volunteer work and just likes to help people. Please take some time to do some brainstorming with your husband and friends and do what needs to be done. My wife certainly has peace of mind knowing that I can survive without her. She also has the opportunity to get away for a bit when she feels the need. Wishing you the best.

[jenny407]

I also am quite impressed by the great relationship you two have. Be proud to have such a considerate husband, as well, though. But I do agree with Bob C: Do try to find people who could help your husband on a private basis. Private help can be much better. There may always be a situation when you really can't get away from work at once, or you may be ill yourself and find it hard to cope. It would certainly be reassuring for your husband as well. I find your attitude very kind, but in the long run, it's certainly better when you (both) can accept outside help, well organised, if possible. Burn-out happens faster than you may think! (I'm thinking of a friend of mine who is in a similar situation.)

[skinnylatte]

Thanks, everyone! All is well. Yes, hubby is a wonderful man, and he is just looking out for me!! And, I totally agree that we need to have backup plans. We are just so financially strapped right now, it really is very hard to save for anything! But, I agree, it needs to be done. And, we do have friends at church who I know would help in a pinch, too. Bottom line, lesson learned! This was the RIGHT thing to do! Thanks again for your support. Oh, and we are married now, not engaged. I just don't remember how to update my profile/I'm too lazy

[Izziwhizzi]

Just an idea for possible future accidents .... have you considered doing his BP in the evening?

Everyone seems to use up their mornings with this stress, its started in hospital as its easier for them that way. But to be honest I've found night times so much better.

I xx

[skinnylatte]

Izziwhizzi, on Feb 25 2010, 02:47 PM, said:

Just an idea for possible future accidents .... have you considered doing his BP in the evening?

Everyone seems to use up their mornings with this stress, its started in hospital as its easier for them that way. But to be honest I've found night times so much better.

I xx

We have, but my husband finds it's easier to get everything moving in the morning. I want to do what's best for him, so while it does create some stress in the morning (we get up at 2:00am so I can be at work at 6:00am) it's worth it.

[Izziwhizzi]

You get up at 2am so you can get into work at 6am?? Sounds bonkers!! Is that the control freak bit? :-)

I'm sure hubby and his body can adjust to a more reasonable schedule if you wanted or needed to change. Your body does get used to routine for BM, e.g. warm food, drinks etc but they can be altered.

Good luck

[kiwiquad]

I can't believe what I've just read!! How do you two manage on so little sleep?

[E-DOG]

skinnylatte, on Feb 24 2010, 10:40 AM, said:

I can't even focus on work now anyway...
My husband is a super supportive, amazing man. He's a total class act. And I KNOW that he did this just to protect/not worry me. But... still, I'm upset? Help me deal with this. I don't want to be upset!

Uh, miss?
Please look at the last thing you wrote. That part where it says you don't want to be upset.
Do you really and truly mean what you say?

Then get over it.

[gordonr]

Being dependant on another human being is a very difficult situation to live.

Dependance is a two way street. The person furnishing the support has an almost irresitable urge to invent a personal narative in which their heroic sacrifce is not sufficiently recognized. And for the person requiring assitance, that sort of narrative is nearly impossible to live with.

The best is (even if you can't do without help), to have the feeling that you are the one driving your own care.

In this case, hubby was apparently more willing to put up with criticism for wasting money than he was to put up with the issues of pride and infantilization (and perhaps recrimination) resulting from calling his wife home from work to clean him up.

At the very least he has laid down a marker emphasizing the fact that what the partner does, she does by choice. And the next time she starts in about how hard she is working on TOP of looking after him, he can remind her that she is the one who told him not to call for paid help (because she doesn't mind, right?)

And the suggestions of Bob C. are much to the point. For if hubby were able to find low cost options for some of his core care (thinking outside the box here) it would do wonders for his selfesteem.

Also, night time is much better for the bowl routine. For one thing, you can sleep off the effects and if anything is going to happen, it is going to happen before the partner goes off to work.

None of this is easy. I think any quad couple will have these issues. Even as a para, the psychology of dependance in the relationship is the same for me. Less extreme, but the same. And the only cure is to get my wife out of my affairs to the greatest extent possible.

Of course others will embrace a relation built upon maximum dependance and infantilization, where the support partner must be at the constant beck and call of the other (who must in turn be at the whim of the caregiver). But most of us do not go for that sort of thing.

Every detail of life organizatin is involved in this calculation. And the desired result is dignity. The goal is worth the effort.

Best Regards,

Gordon

[qbounce]

Gotta say, I agree with the others here regarding the night vs. morning BP. I switched mine at the hospital after the accident. They said it takes so much energy during the day for everything else, that the BP compounds everything.

Also, I recommend trying to change the routine to every other day. It's saved me a lot of time, gel, gloves, and suppositories!

[Quad65]

Another vote for night vs. day BP routine. I like it for a number of reasons. Less stress for everyone in the morning, a good dinner seems to push things along, clean up afterward and hop in the shower or into bed, get a full nights sleep. If something doesn't go well, you're at home already and it can be handled with a minimum of fuss-and-muss. Adapting is the key.