Friday, December 05, 2008

A Quick Question

Another brief post because the computer system went down in my hotel and I'm writing quickly before a presentation.

On arrival here in Plymouth Joe and I got into a spectacular fight. A real blistering argument full of nasty words and out and out anger. We knew we were both tired and we were both frustrated but nonetheless it was a big one. We don't fight often and have nearly lost the skill.

What was hard, though, was once we arrived at our hotel, I needed Joe's help to get out of the car and to get into the hotel. I didn't want to take it. I wanted to do it on my own. I really didn't want to have to rely on someone right after a screaming match.

But I had to.

I resented my disability more at that moment than at almost any other time. I felt that I had somehow stepped down in the equality of the relationship.

So, since I have no time to really write about this, I'll just ask ...

How do you handle fights with a partner who also has to double as a care giver?

Does it bother you too ... what about you as a care provider after a spat with the person in your care ... how do you do that well when there is still anger in your arms?

Curious ...


Anonymous said...

We don't......handle them I mean.

There is a silent barrier between us that grows with each arguement and has been there since the wheelchair came.

It makes my dependence on him into a huge issue for me and I fear our days are numbered.

I would like to get a relationship counsellor but he will not go and without him I cannot.

You hit a raw nerve with that one Dave.....


Glee said...

Partners, husbands and wives should never be carers. Or only as far as in a non-disability relationship that is.

Horrible situation. Cruel. Destructive.


Anonymous said...

I think, and I admit this is more theory than practice, one has to treat such things *as if* they were exactly as routine as making a cup of coffee. No matter how big the row, and how bruised the feelings, it's mean and petty not to make coffee for two, if one's making it for oneself - and mean and petty to refuse to drink it. One doesn't have to feel like it, but one has to do it.

Likewise, it's mean and petty not to give the other routine help of a normal relationship, and it's mean and petty not to accept it. One doesn't have to feel like giving or accepting, but one has to do it. The giving and accepting don't negate the fight, or the feelings: they're just part of fighting like a decent person.

Doing that *is harder the more personal it is: but it's probably also more important. If someone's important enough to fight with, he's important enough to fight well with.

As for inequality - Joe's giving you the help you need, but you're allowing him to give it. If that isn't inequal in normal times, it's certainly not unequal when giving and accepting are alike hard.

Ettina said...

As a volunteer, I've had issues with this too, even though my relationship with the people I'm helping is much less intimate. The most clear example, I'd say, is when an autistic girl with CP bit me because I broke her routine. I understood why she'd done that and wasn't angry, but my arm was bruised and hurting and I was scared of her. And right after she bit me, I was holding her up in the pool.
It was fine in the pool because I just did what I'd been told to do and didn't interact much (although we had trouble because the way she was accustomed to being held hurt my bruise, so I kept shifting my arm and then she'd move it back). But when she indicated that she wanted to get out, I panicked. Her other assistant, who always helped me, hadn't come yet and I was really afraid that she'd get upset about that. I tried to slow down the whole getting out of the pool process in the hope that the other assistant would come soon, and meanwhile I was dreading having to deal with it on my own if she didn't come in time. Fortunately, as I later realized, getting so upset had tired this girl out and she was perfectly amenable to moving slowly out of the pool (I'd help her climb out and she'd crawl to the wheelchair).

Anonymous said...

Dave - sometimes it just sucks..period. As the caregiver to a partner who had a stroke a few months ago I struggle with anger all the time. How can he be such an ass to me and then need help out of the tub. Somedays, not as often anymore, we go to our seperate corners and seathe with anger at the stroke and what has happened to us.

theknapper said...

Well Dave, this is another area that needs exploring...I like the things that Baba Yaga wrote about treating things "as if"......and the possibility about being able to do this depends on the stability of the relationship. For you & Joe, it is possible (tho' not easy) but for others whose relationship is in dangerous waters it's very scary.

I look forward to reading more responses.I think power in relationships can shift back & forth ....not always easy to make simple decisions ie defining who is the victim.(or how to talk about these experiences) I'm reminded of a questionnaire re exploring abuse in same sex relationships.....who's life gets bigger or smaller.

Anonymous said...

I find it sad that there haven't been more responses than these all day. I had been hoping (and half expecting) that this would spark a much larger discussion than this.

Speaking for myself, I didn't respond earlier because I've never been there (not having a mobility impairment severe enough to require the assistance of carer, ditto for my partner) so I couldn't think of anything insightful to say. Maybe others were in the same situation (perhaps in part because this blog tends to draw a crowd more strongly oriented toward cognitive impairments rather than mobility impairments?)

But I suspect this is the kind of delicate issue that comes up frequently, and probably should be discussed more frequently and more openly than I suspect it is now.

Like the Knapper, I think the way it needs to handled is likely to be very different in a strong relationship like the one between you and Joe ... as opposed to the situation that Heather faces in the first comment above.

It would probably help in the big picture if more governments would recognize that it isn't really fair to EITHER partner to expect one to be a 24/7 carer for the other. They really should make it more feasible for people with disabilities to receive, at minimum, part time care from an independent carer who isn't related to them in any way.

Even in good relationships, 24/7 care has got to be hard, at least sometimes, on both of them. And if things are shaky to begin with, I can see where that can create a really scary situation for the person with disabilities. Or, if not outright scary, then perhaps despairing to watch your relationship deteriorate without the ability to go out and contact resources on your own (independent of the partner) to do something about it.

Heather: What if you told your partner that you wanted to see a therapist for issues unrelated to your relationship? Would your partner help you get to the therapist by yourself under those conditions? I know you shouldn't have to lie or mislead in order to get the help you need, and especially not to your own partner. If it were me, I would feel terrible about it. But if you were going on your own, then it would be in fact more for you to figure out what you're doing next, how to do it, and how to cope. So, not really a lie actually.

Anonymous said...

To all: Wonder if there is some way we can draw more people from around the web to this discussion? Or if someone knows of a similar discussion that has already occurred elsewhere on the Internet that we could check out. Seems a shame to have so few responses for such an important and sensitive topic.

FridaWrites said...

We can fight like cats and dogs but he'll still give help in the middle of an argument, while we're fighting--sometimes I'm stubborn and don't want the help then. Ironically, we recently fought because he thought on our camping trip that I wasn't independent enough and I thought he wasn't helping enough--yet later we both decided he wasn't doing too much or too little--I think we were both frustrated. When someone else mentioned how much he was doing that weekend, he was surprised and denied that, though it's something we had argued about!

He's become snappy postsurgery thinking I've been impatient when I'm not--there are a bunch of things to do at once.

Brenda said...

I hear 'ya dave. My husband is my caregiver, and we've certainly had our share of fights over the past 23 years. In the past, we would often spend some time apart after a fight to cool down and regain some perspective. But since I've become disabled, that's no longer reasonable. More than once, I've cried tears of frustration when in the middle of a fight - when I am at the very peak of the "I don't like you right now" frame of mind, I've had to ask for his help for something extremely personal. I think that is when I feel the most humiliated, the most angered, than I have ever felt about my disability. And yet, somehow, we manage to find equal ground again...eventually. To his credit, even when HE was at the very peak of the "I don't like you right now" frame of mind, he never refused me what I needed. He was definitely not happy about it (neither was I), but it got done.

I have no idea what the answer is to these situations, just wanted you to know that there's someone else out there who knows exactly what you go through in this type of situation.

Anonymous said...

I think that in a fair society, funding should be available to provide a full-time caregiver -- or at least one for half of the day. I cannot imagine being in this situation (being cared for 24/7 by my husband or vice versa should either of use become disabled) -- and I know that sounds horrible.
As a person who works with young people of varying disabilities -- my heart goes out to their families who toil day in and day out to look after their loved ones. Everyone needs a break some time. We all need a break from our partners, regardless of our capabilities. God bless you and Joe for doing what you are doing.

Anonymous said...

I have been thinking about this topic for days.
The other day while I was helping my husband complete a task I was frustrated because he was tired and snapping at me - it was after midnight, we were both tired. Could he do the job on his own - maybe, but would have taken hours instead of an hour - and even then he may not have been able to manage it.

He was feeling frustrated because he was tired, and wanted it done, and didn’t want to get ‘chipped’ for not being really ‘chirpy and happy’ by his ‘momentarily annoying, but “helpful”, wife’.

He needed the assistance and, as his partner, it was appropriate for me to be there for him. That is what a marriage or partnership is about. He was relying on me to help him out, I vowed to him over 14 years ago that I would be there for him whenever he needed me to be, as he did to me.

It was just an average tête-à-tête in an otherwise boringly sound marriage. We all get frustrated by our weaknesses, insecurities and shortcomings. We all hate admitting we have them. We hate having to ask for help, but we all have to at some time or another.

You have a different way of getting around (and in and out of cars/hotels etc), that’s life, that’s your life and that is Joe’s life - I am sure Joe, while wonderful, isn’t perfect and relies on you for support or assistance when he needs it in the areas (less physical, more emotional) where he isn’t 100% able.

I don’t like the terms Carer or Care Giver for parents or partners. Carers and Care-givers are on the payroll - Parents and Partners are just there.

Oh, by the way, my husband does not have a disability (he does have one too many Y chromosomes at times - but then, so does 50% of the population) and the task was simply a work related job with a deadline and his computer was not playing nice - but without us working as a team - it wouldn’t have got done.

I wonder by this post of yours and one a few days later if you are hitting a point in your reasonably recent ‘life with a disability’ where it is about to say “Whammo!” guess what, your disability isn’t going away. Many parents seem to hit this wall around the 3-4 year mark - I thought it had to do with something about child development - but maybe this is how long it takes for a human brain to accept the reality of life with a disability either their own or their child’s - have a momentary meltdown… then get on with it.

I do think you should pursue the powerchair. In my opinion… power is POWER. And then, if you want to chuck a ‘hissy fit’ and storm off for a moment - you can, at 8km per hour, but on your own.

Maybe wheelchairs need a “Stomp Mode” so you can have a slight swivel of the seat from side to side to further cement your momentary displeasure.

Catherine said...

I help my MIL who is in a wheelchair. She and I don't agree on many things and have had some bitter arguments. It has angered me that I have to help her right after she has insulted me. Just as it angers her that she has to accept help from me after I have angered her. Because I have 5 kids and a busy, stressful life, I don't have the luxury of pride in these situations. She has gotten miffy and said she will sit the car until someone else helps her out, or will not go somewhere with me. I always tell her that I consider assisting her separate from our differences. There are certain behaviors and actions that have nothing to do with personal relationships. She had a difficult time with this way of thinking, but I think she gets it now as I have never threatened leaving her stranded or in a way that is not a good thing to do. I keep the arguments, disagreements and emotions completely separate from personal feelings with her. I would help anyone who needs assistance in basic things if I see such assistance needed. I don't regard it as a favor but something that is the right thing to do. It is rude NOT to help.

Jennifer Ruth Jackson said...

I fully understand I am years too late to chime in here but, since you didn't receive many answers, I'll try.

My husband is my caretaker. We have no one who comes in to help and absolutely no respite care to give him time alone (at his insistence). When we fight, he still does everything I need and I let him. He would never deny me help and I wouldn't put myself in a dangerous or unfair position. We may carry out our roles silently or hell, still arguing, but everything carries on as normal.

I used to fear having my romantic partner be my caretaker because there is an opportunity for abuse and power shifts, especially during fighting but that hasn't happened.