66 replies to this topic

[Spinner]

frustration, on Mar 26 2010, 07:32 AM, said:

No I am not saying this as a generalisation. I was generalising that the constant requirement for high quads to articulate their own needs was self-centred, which is probably an unfair generalisation for which I apologise.

@Frustration, honestly I have wondered this same thing myself. I started thinking about it when I began helping my man on a regular basis. His attitude seemed to change so much when I was helping him, it was like a totally different side of him came out.

[Scribbler]

frustration, on Mar 26 2010, 12:32 PM, said:

Quote

If you're implying that quads have a self-absorbed personality then I disagree

No I am not saying this as a generalisation. I was generalising that the constant requirement for high quads to articulate their own needs was self-centred, which is probably an unfair generalisation for which I apologise.

Frustration, Thanks for clarifying that, and I do understand that you need your own space; we all do, and no one here is denying you that right..
I also know that high quads need more attention than para's, but speaking as a "Golden Oldie Quad," I feel my level of care is minimal compared to others.
The Live-In PA's who work for me have lots of free time; we don't spend all day together unless we're out somewhere nice.
We are all guilty of being selfish at times; this applies to AB's and SCI, I've seen it all at some stage of my life.
Maybe your partner/husband should be reading this Thread with you. Is there any chance of that?

Mike

[Loving Him]

GOOD LORD!! I JUST JOINED THIS FORUM TODAY..AND AFTER READING ALL THIS MESS IM GONNA PROBABLY CANCEL..MY BOYFRIENDS A QUAD.. I LOVE HIM, SOMETIMES I FEEL MORE THAN HE LOVES ME...I JUST HAD SOME QUESTIONS..BUT HELL, NOW IM AFRAID TO ASK, BECAUSE GORDON MIGHT RIPP ME TO SHREDS...WOW....THATS REALLY SCARY..OK WELL UMMM...I GOT MARGARITAS IF ANY ONES INTERESTED...LOL.......

[Izziwhizzi]

It seems that a lot of the work load goes onto F's shoulders, and family and friends are not helping the issue.

My family have really never got into doing my care, my parents positively made sure my younger siblings didn't do anything (i.e. they were traumatised by my accident enough), and now at 40+ they still have never washed, showered, got me into bed or heaven forbid done a BM. I have two c4/5 male mates, one whose older brother took an active role in his care and he blossomed, and another whose family shyed away, and he is now in a poor physical and achievement level.

Friends? Well I have a couple of friends who know I have a leg bag who help with lifting, but the others? Well, I positively don't tell them of my care issues, in the idea that I'm not a crip but one of the AB gang with no pee-ing or poo-ing problems. So I feel guilty of non-inclusion of friends like you do of your hubby.

Friends for a quad? Well, IMHO, new ones are hard to acquire after injury purely because of the lack of mixing and living an exciting life. Mates for some blokes? come on even the AB ones? well some guys don't like or are not good at communicating and keeping those far to reach mates, and can become very insular. Who writes the Xmas cards or postcards to blokes mates? Its the woman, AB or quad.

I have no solution here. I understand the exhausted female caring role whilst have experience at the poor life when high level care and dependancy curtails your life.

It takes a brave woman to step out, and a depressed bloke to hide away.

[evilmac64]

i think a break every now and then beats a divorce or a break down We all have hardships in sci ab relationships on both sides every one has to find away for quality of life that works for both spouses imho

[T8caregiver]

I'm going to add my two cents to Frustration's frustration. I am a caregiver for a T-8 complete. To add injury to insult, the car accident that rendered him SCI also exacerbated an old neck injury, leaving him with limited range of motion in his arms. So, even though his injury is T-8, he is more like a high functioning quad.

Our marriage was on the rocks before (he actually had another woman with him during his accident), but I decided to man-up and take responsibility for my family. That was a very long year ago and I am exhausted.

Yes, I know that I can never know what it is like to be SCI. No matter what my illness or injury is (including a fairly serious back sprain trying to get him off the floor when he threw himself out of his chair in a fit of pique), he always wins!

Respite? What's that? He has a full-time PCA, a wonderful young man with a background in nursing. However, my husband won't let him help with toileting or bathing, that all falls on me. Right now he has a potentially wicked friction sore and expects me to tend it with no help from anyone else. He even told me that it is my fault because I "didn't bathe him enough." I am also the only one he wants to "glove up and dig in" during the morning bowel program (I would love to not know what goes on behind the bathroom door). In the meantime, a very willing and able PCA spends a lot of time drinking coffee.

I hide at my jobs, it is the only relief that I get. Luckily, I have very good friends who will listen. They ask me how things are and the only word I have is 'nightmare.'

The only positive thing, and I recommend this to Frustration, is I have my own bedroom. He insisted on it (in the hospital he told me that I had to move to the other room, like I was being banished). It is my sanctuary. In the evening after dinner and all the go to bed stuff, I walk out of his room and take a couple of hours for myself. He groused once that I had arranged the room in such a way that he couldn't get in there if he wanted sex. I didn't bother to move anything, in fact I made it less accessible. That is my space.

This is definitely the worse in "for better or worse" and the sickness in "sickness and health" and I hope to get him to a level of function where I can have my own life, including escape if need be. I'm in my 30s and this isn't what I signed on for. I work two jobs to pay the bills and am his caregiver at least 30 hours per week on top of that.

Not trying to highjack the thread, but we caregivers need a break! We will seldom ask, but we need it. I think Frustration's husband will do everything he can to keep her under his watchful eye. I don't think she is asking for too much!

T8C

[ClaraTaylor]

T8caregiver, on Apr 5 2010, 07:57 PM, said:

I am also the only one he wants to "glove up and dig in" during the morning bowel program (I would love to not know what goes on behind the bathroom door). In the meantime, a very willing and able PCA spends a lot of time drinking coffee.

When you're incapable of doing it yourself sometimes you don't always get the choice. If this aspect really bothers you don't give him a choice.
Or rather give him two choices.

Choice one is that you help him teach his PCA how to work the bowel programme for a week.
Choice two is that as of tomorrow you are not doing the bowel programme any more. You wont be running into the bathroom regardless of the yelling. If he has a normal routine make sure that you are "busy" with something so that you wont be around to help.

He's not a three year old he can have as many tantrums as he wants but you shouldn't be having to hide at work just to get away from who is the man you are meant to enjoy spending time with. If he insists on throwing himself on the floor... I'd be tempted to leave him there for at least a good half hour before you even think about helping him up. That's not how a grown up behaves regardless of what injury they have.

Keep reminding him that his PCA is there for a good reason - because he is best qualified to help with things like sores and bowels. And so that you CAN BOTH lead an independent life together. Not so that he can sit around drinking coffee.

I am glad that you have your own space. I think even in normal relationships having your own space and privacy is important.

Congratulations on lasting so long.