[frustration]

Hi guys,

I'm after some advice. My spouse is a high level quad. We have a relatively reliable support roster.

It's been a long time since he last went to residential respite, unless you count a weekend last year when he went with a carer for a school reunion interstate. I do get away from time to time, last October I took our daughter (then 5y) on holidays interstate.

I am planning a weekend away after Easter, but I work three days a week, and our daughter is at school, so there are limits to how much we can go away. I would really like to have a week every couple of months when he went to respite.

There are a couple of places in our area, two of which he has been to before and does not want to go back to. The other we have heard stories from other people with disabilities that make him not want to go there.

I understand that the environment and the care will not be the same or "as good" as at home, but I need to have some time at home without being backup carer when a support worker is not here or doesn't turn up for whatever reason.

Every time I raise this with him it turns into a massive argument... help!

[Tetracyclone]

I sympathize with both of you. Is there no relative who would step in as backup for a week at a time?

[gordonr]

frustration, on Mar 18 2010, 12:33 PM, said:

Hi guys,

We have a relatively reliable support roster...

...I would really like to have a week every couple of months when he went to respite.

Respite from WHAT?

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I need to have some time at home without being backup carer when a support worker is not here or doesn't turn up for whatever reason.

OK. I suggest that you write down the time and date, right now. Then, the first time you have o do some significant backup, mark that down on the paper. Let's say you passed five days with no big deal. There, you go. That's your respite.

Best Regards,

Gordon

[Tetracyclone]

Gordon-
With due respect, your idea does not meet the of knowing for sure you are off-duty. The anxiety level is different. I assume "respire" is thee name for temporary nursing home care in whatever country of the "free world" these people live.

She would not visualize the need if there were not a good reason, by her own standards. Still, as I said, if I were the husband i might resist this idea tooth and nail for a variety of reasons.

Frustration: could you please fill us in further about the roots of your frustrations.

Pat

[KeepTheFaith]

I find it interesting that you describe yourself as the "back-up" caretaker. Maybe he is afraid that one day the "respite" care will turn in to long term care and you will not bring him home?

[HiltonP]

KeepTheFaith, on Mar 18 2010, 05:07 PM, said:

Maybe he is afraid that one day the "respite" care will turn in to long term care and you will not bring him home?

She wants to put him in a home while she goes away on holiday.
And he's not crazy about the idea.
Can't blame him!

[mellowgator]

dang gordon go easy on the poor woman. she wants a break. it's not a crime. having help in and out of your home is distracting and can be overwhelming. i know i experienced it when my mother in law lived with us.

[mellowgator]

dang gordon go easy on the poor woman. she wants a break. it's not a crime. having help in and out of your home is distracting and can be overwhelming. i know i experienced it when my mother in law lived with us.

[gordonr]

HiltonP, on Mar 18 2010, 04:53 PM, said:

KeepTheFaith, on Mar 18 2010, 05:07 PM, said:

Maybe he is afraid that one day the "respite" care will turn in to long term care and you will not bring him home?

She wants to put him in a home while she goes away on holiday.
And he's not crazy about the idea.
Can't blame him!

Hilton,

I don't think that is it. In the quote below, she mentions respite as an alternative to going away, not an enabler.

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I am planning a weekend away after Easter, but I work three days a week, and our daughter is at school, so there are limits to how much we can go away. I would really like to have a week every couple of months when he went to respite.

In other words, she doesn't want to "put him in a home while she goes away on holiday" (something which would be very reasonable), no, she just wants to put him in home so that she can have the house to herself for a week.

And she wants to do that one week out of eight.

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TetraCyc: : :I assume "respire" is thee name for temporary nursing home care in whatever country of the "free world" these people live.

Pat:

Main Entry: 1re·spite
Pronunciation: \ˈres-pət also ri-ˈspīt, British usually ˈres-ˌpīt\
Function: noun
Etymology: Middle English respit, from Anglo-French, from Medieval Latin respectus, from Latin, act of looking back — more at respect
Date: 13th century
1 : a period of temporary delay
2 : an interval of rest or relief

Your "freeworld" reference is spot on. In social medicine countries, respite is an exceptionel service offerred for natural caregivers who are at the end of their leash. Like other services, this will be funded by the government. However, places are obviously limited, so even very heavy cases would not be elligible more than once or twice a year. Clearly she must be paying this out of her own (or his own) pocket.

This is subtle, but she is using a term "respite" which everybody uses and which everybody "gets" when it is used to mean a much needed rest for a truly taxed natural caregiver. And she is using that term, with its sympathy friendly freight, to describe a situation where she just wants the house cleared out.

Let's review:

1--She is not unable to leave him alone. She goes ut to work and she goes on holiday. Right now she plans to go away for Easter.

2--She doesn't provide his care, except as a back-up.

3--She is not asking for one exceptional "interval of rest or relief". She is asking for something like a gimp parallel to shared custody.

And what is the trade-off she is asking for?

She wants the guy evicted from his own home, every few weeks, so that she doesn't have to deal with his existence.

And where is he going ? Is he going to a hotel? Is he going to a Summer Camp (remember the "shared custody" analogy)? No. He is going to a nursing home, where people are usually sent, at the end of the line, when no other solution is practical or possible for an overloaded family.

So if two trips away per year (or there abouts) is not enough, then why should a month or two of at home respite time be enough? How is it going to feel for him in the third week, when he sees her just crossing the days off the calender until she gets to her "own" time?

(Some people are really watching WAY too omuch Oprah!)

Seriously. Any two people living together is a territorial proposition. With a gimp it is even worse, trying to lay down ground rules that make the place livable and accessible, with a minimum of gimp "no-go" zones. I bet the guy is already parked in the smallest corner possible. But the way she is trying to set this up now, he becomes an official visitor in his own home.

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TetraCyc::She would not visualize the need if there were not a good reason, by her own standards.

This unfortunately, is the plain truth. My disaproval makes no difference. If she finds her life "too much", if she needs to establish absolute primacy in the family residence, then he either has to go along with her demands, or he has to stand up to her.

As usual, the element of SCI is almost certainly overblown in this situation. It is not about SCI, it is about just another woman in mid-life who is trying to rearrange the furniture. Lots of couples hit the rocks. Most of the rest is circumstantial window-dressing.

Maybe I am wrong. Maybe she minimized her contribution. Maybe she really DOES need that kind of time-at-home-alone. If so, let us hear about the sleepless nights, etc. Not just. "Well there was this one time...", but real objective demonstration that she is being asked to do MORE than the average wife and mother working and parenting and al the rest (in the real world, on a low end budget). In other words, let her demonstrate her life is UNUSUALLY hard.

But maybe this is simpler than that. Maybe her husband is simply in the position of a chess player whose opponent has him on the run. His King is systematically reduced to an ever smaller space until no space remains at all.

And who is paying for all of this? She works three days? She travels? HE travels with a carer? Doesn't sound like the wolf is at the door.

Maybe he should cut HER loose and set up an autonomous situation. Keep the house of course. Much less of a disruption for her to relocate. If if he figures he needs to sell the house to get at his equity so that he can go into some kind of "assisted living" (as opposed to the out and out nursing home she is trying to put him into on a regular basis), then so be it. At least he has the pride and selfrespect of a person who is running his own life.

Frankly, I think a clear evaluation of the financial equation and the projected result of different scenarios, would most likely cause her to back off. But one way or the other, I think it is time for someone's foot to come down, and that foot is not hers.

Best Regards,

Gordon

[frustration]

I was thinking one week per QUARTER which last time I checked was 1 in 13.

While there is family who "could" step in, the past decade since he was injured in his late 30s has proved that is just not going to happen. His parents who constantly made excuses for his sisters "oh they have young kiddies" (who are now all teenagers) are now well into their 70s and constantly making excuses for themselves. These days they have their own health issues so despite having been trained at rehab in all aspects of his care, they have only ever done it on a couple of days in 2003-2005 when I was out of action due to day surgery. One of those days I put him to bed after having an IVF egg pickup the same morning, because his parents were standing around looking at the hoist sling like it was some kind of complicated foreign object. I should have retreated and left them to it, but spouse was getting frustrated and angry at them and there was nowhere to retreat to.

Oh, they arranged a couple of weeks ago to come for dinner because I'd had tickets to a show for several months and his carer for that night cut her shifts only a fortnight earlier. But first he rang every single carer and agency he could think of because his parents are "slow" and he finds dealing with them frustrating. Apparently while I was out they did offer to put him to bed but he said no because they would be too slow.

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Seriously. Any two people living together is a territorial proposition. With a gimp it is even worse, trying to lay down ground rules that make the place livable and accessible, with a minimum of gimp "no-go" zones. I bet the guy is already parked in the smallest corner possible.

Parked in the smallest corner? Puhleez... there is no corner of our home that his/carers reach does not extend to!! At least our daughter has the luxury of a room that his carers never go into, actually spouse rarely does either. We live in a small 3-bedroom house with one bathroom. One bedroom for us, one for daughter, the third is his "office" which also houses the hoist and wheelchair at night and a huge cupboard of medical supplies. Bathroom/toilet is occupied by spouse and carer from 8.30 until at least 10am, longer if he is shaving. Laundry is used by carers. Kitchen by carers, spouse likes to direct. Living and dining area is usually quiet in the mornings except has open doorways to kitchen and hallway leading to bedrooms. Our doors are all sliding doors and the walls aren't solid and sounds carry easily.

Gordon, firstly you are not a spouse or carer and secondly you are what a T5 para? Quite frankly you have absolutely no idea what it's like to live as a completely dependent person, let alone WITH a completely dependent person. I'm not interested in your poorly judged and thinly veiled dismissal of the needs of a family member of someone with SIGNIFICANTLY higher care needs than yourself.

Even without taking the carer hours into account, every day I give him meds between lunch and dinner, help with set up of computer equipment, stay up until whatever time he wants to go to sleep so I can give him meds, lie the bed down, put on sleep apnoea machine, turn out the lights, change settings on heating/cooling, and usually get up once or twice to rearrange his position or blankets or whatever.

Every time the phone rings between 7-8am I worry that it will be a carer calling in sick. It happened both days last weekend. Saturday he was able to get another carer to cover the morning, but Sunday he couldn't and so he stayed in bed all day so that daughter and I could still go to the activity we had planned, but for a shorter time because we had to be here for meals.

Every morning I am woken by his carer coming in to start the day (which on a weekday is no biggie because I have to get our daughter ready for school). Right now it is 10am on my day off, I got to sleep at 2am and I would love to sleep for a couple of hours. He is in the bathroom with his carer shaving him, then will need to go back into the bedroom to transfer to bed, get dressed, transfer to wheelchair. He will spend most of the rest of the day at the computer, with voice activated software. By the time the carer leaves it will be less than 2h until our mobile noise-maker gets home. There have been times I have taken the car somewhere and slept in it for a couple of hours in the middle of the day.

He also has a pre-existing chronic condition (and actually a couple of post-injury ones too) which can necessitate intervention at any time of the day or night. We had paramedics here at 3am a week or two back.

We are not talking about nursing homes (aged care) we are talking about residential respite for people with high needs physical (usually) disabilities. Somewhere that his other carers can still come and do their usual shifts, he can take a laptop and still get online and use VOIP etc, but where someone ELSE will scratch his head or make him tea or stay up until he is finished "just looking one quick thing" up on the computer at 11.30pm which takes well over an hour.

We can talk to him on the phone, we can meet him for coffee after school or have a meal. But someone else will be backup carer.

Look if he wanted to go to summer camp or on holidays or to stay in a five star frigging hotel (where btw getting a bed would be easier than at respite) that would be great.

Our family GP has told both of us that I should be having SIX WEEKS of respite a year. And in the surgery, spouse will nod and make all the right supportive noises about my needs etc etc. But getting him to put his money where his mouth is???

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but real objective demonstration that she is being asked to do MORE than the average wife and mother working and parenting and all the rest (in the real world, on a low end budget). In other words, let her demonstrate her life is UNUSUALLY hard

Most of the "average wife and mother" that I know have regular times when their significant other is occupied in the shed, golf course, work, pub, jogging, fishing etc. None of them have had carers or indeed any non-family member coming into their (small) home on a daily basis for a decade. And unless I'm mistaken, neither have YOU Gordon.

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But the way she is trying to set this up now, he becomes an official visitor in his own home.

The crux of the issue is that, as things currently stand (and have for some time) I feel marginalised in MY own home by him and his carers, and that all of the activities and behaviours and attitudes that go along with that are being justified due to his overwhelming physical and medical needs. I guess I'm also scared that daughter could end up in the same boat.

This post has been edited by frustration: 18 March 2010 - 11:32 PM

[frustration]

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respite is an exceptionel service offerred for natural caregivers who are at the end of their leash. Like other services, this will be funded by the government. However, places are obviously limited, so even very heavy cases would not be elligible more than once or twice a year. Clearly she must be paying this out of her own (or his own) pocket

If regular respite is not available or provided, then "natural" caregivers WILL get to the end of their tether. At which point, governments will HAVE to take on all of the freebies they are getting from us. Residential respite in this corner of the universe is not expensive as costs are subsidised by the government.

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At least he has the pride and selfrespect of a person who is running his own life.

Yes well over the years he's also had the sheer luxury of running mine! There was a time when our daughter was 2y when we did not see a carer AT ALL for over a fortnight. I point blank refuse to do that again. Dealing with a frustrated angry person is a role best left to those who have no emotional attachment to be shattered by his abuse.

And I can assure you that if either of us are going to cut the other loose, the primary consideration in WHO should continue to live here is a child who has never lived anywhere else.

[greybeard]

Frustration, take no notice of gordonr. He occasionally enjoys acting like an arse and being deliberately objectionable. You do not have to justify a damned thing to him, or to anyone else on this forum. You asked for advice, not a lecture on how gordonr thinks you should behave. I'm not in a position to offer any suggestions, but I hope someone can give the benefit of their own experience. Good luck.

[mellowgator]

you go girl!

[kiwiquad]

Hi frustrated, "frustration"...just wondering where you are from, & what your husbands break is?

[graphic]

Frustration, as a T10 para I'm not qualified to comment on the needs of your husband but I know the extra workload my wife has taken on since I became disabled and imagine I can multiply that by ten in your case. I think it's reasonable that you should want the occasional break. It might be a bit naive of me but couldn't you just sit down next to him (unplug his computer if you have to) and tell him that for the sake of your relationship he has to accept that he'll have to go into respite care for a short period occasionally? I'm fortunate that I'm able to look after myself should my wife want to go away but if I had to go into respite for her to have a needed break then I certainly wouldn't object. Any relationship is about give and take and, from what you've said, your husband doesn't seem to understand the 'giving' part. It might also be good for your daughter to feel she's number one for a while. Yes, it will be hard for him but not as hard as it would be if your relationship broke down. I think it calls for some hard love.

[gordonr]

Dear Frustration,

There are a number of things that I understand better after your latest posts.

Greybeard is right that I allow myself to be objectionable, however he is doesn't understand where the behavior comes from. When I see a post from someone named "frustration", I do not react as unto a person, but rather to the concepts I encounter. I am dsagreeing with ideas and sentiments. And I freely admit that I may be completely wrong. That goes with the territory.

Here is a case in point:

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I can assure you that if either of us are going to cut the other loose, the primary consideration in WHO should continue to live here is a child who has never lived anywhere else.

I disagree with this. In fact I strongly disagree. Children are resilient. Children move all the time. Moving a child is, literally, child's play. An SCI, on the other hand, is truly DIFFICULT to move. It is difficult to find a place. It is dificult to fine tune that place. There are always things that are forgotten and refinements that becme apparent years and years down the road. So, once an SCI is well settled into a place, unless he can see some clear ADVANTAGE to moving, or unless he craves the CHALLENGE of moving, then no one should take it upon themselves to force him to move. Certainly not with the argument that a five or six year old cannot adapt to a new place. That is just lame. I can't imagine a judge taking your part on that score.

On the other hand, I agree that it is difficult to have strangers in the home. Many people on this forum do their partner's care because they find that more agreeable than the kind of set-up that you have evolved. I don't think there is any right answer to this question, I just notice that people can be fine either way.

The problem here, is that you are not fine. And there are different ways of proceeding. Most people are at the level of revindicating some kind of downtime, as for instance a vacation or just a weekend away.

And in your case, there seems to be no big obstacle to that. It is easy to agree that you should have time to yourself, including time away. However, it is difficult to see how you can kick a man out of his own home, so that you can get away from him THERE.

In fact, this reminds me of a drunken dispute I had many years ago in a bar. Some lady and I had come to the conclusion that we simply must part. "Well then", she said, "Go away then!" But you see I was at home in that particular watering hole. I wasn't going to leave to please anybody. And on calm reflection, neither was she. There seems to be a natural law in this: Anybody is free to leave a place if they so desire, but nobody has the right to chase somebody else out.

But lets imagine for a moment that you really want to make this work.

Allow me to cast a bit of perspective on your perception of events.

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Every time the phone rings between 7-8am I worry that it will be a carer calling in sick. It happened both days last weekend. Saturday he was able to get another carer to cover the morning, but Sunday he couldn't and so he stayed in bed all day so that daughter and I could still go to the activity we had planned, but for a shorter time because we had to be here for meals

Both of you compromised in order that you should have your outing. You had to come home early. He had to stay in bed all day. Which one of you had the better time of it?

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(speaking of parents)...they arranged a couple of weeks ago to come for dinner because I'd had tickets to a show for several months and his carer for that night cut her shifts only a fortnight earlier. But first he rang every single carer and agency he could think of because his parents are "slow" and he finds dealing with them frustrating. Apparently while I was out they did offer to put him to bed but he said no because they would be too slow.

Translation: He was unable to find a carer on an evening you had plans, and you were able to go anyways. So not only did you ALMOST miss the outing with your daughter, you ALMOST missed this evening at the theatre.

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Yes well over the years he's also had the sheer luxury of running mine! There was a time when our daughter was 2y when we did not see a carer AT ALL for over a fortnight. I point blank refuse to do that again

OK. You sufferred an intense two week period three or four years ago. Most of us, looking back, can find times like that. One that put me to the test involved being home alone for two weeks with two small children, in a frozen house with no power, while my wife was comandeered by the emergency response, working two shifts and sleeping in her office. Shit happens. And it happens to everybody.

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Even without taking the carer hours into account, every day I give him meds between lunch and dinner, help with set up of computer equipment, stay up until whatever time he wants to go to sleep so I can give him meds, lie the bed down, put on sleep apnoea machine, turn out the lights, change settings on heating/cooling, and usually get up once or twice to rearrange his position or blankets or whatever

This is probably where you stand your best chance of making positive changes. There is no reason why your sleep should depend on his whim. It is perfectly reasonable for you to say that you have had enough, wish to sleep, and in consequence, NOW is the time for the meds and lights out. If the routine is steady and dependable (not just a substitution of your caprice for his caprice) then he will have no justifiable reason to protest.

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Every morning I am woken by his carer coming in to start the day (which on a weekday is no biggie because I have to get our daughter ready for school). Right now it is 10am on my day off, I got to sleep at 2am and I would love to sleep for a couple of hours. He is in the bathroom with his carer shaving him, then will need to go back into the bedroom to transfer to bed, get dressed, transfer to wheelchair. He will spend most of the rest of the day at the computer, with voice activated software. By the time the carer leaves it will be less than 2h until our mobile noise-maker gets home. There have been times I have taken the car somewhere and slept in it for a couple of hours in the middle of the day.

Lack of sleep. I can relate. I have four kids of which I am primary caregiver. They are old enough to make their own breakfast on the weekend. But that doesn't make them quiet. The only way to get any sleep in this house after seven AM is with ear plugs and an eye shade. Which I use for that purpose.

Interesting detail about your daughter. You have somebody take her out while you relax? Hmmm... I should look into that.

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Gordon, firstly you are not a spouse or carer and secondly you are what a T5 para? Quite frankly you have absolutely no idea what it's like to live as a completely dependent person, let alone WITH a completely dependent person. I'm not interested in your poorly judged and thinly veiled dismissal of the needs of a family member of someone with SIGNIFICANTLY higher care needs than yourself.

Here's the point: Life is a very demanding enterprise. It is demanding for all of us regardless of the details of our situations. That said, from your capitalization above, it looks like the hardship of living WITH "a completely dependant person" actually trumps the hardship experienced by that person, and certainly is on a whole other level compared to the trivial picadillos of a mere T4 para.

Heh, Heh. This forum requires a good sense of humour.

Best Regards,

Gordon

[frustration]

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Interesting detail about your daughter. You have somebody take her out while you relax? Hmmm... I should look into that.

She was at preschool. Spouse was working from home which entails noise due to talking to computer, also phone calls inwards are taken on speaker which is unavoidably loud (it's linked to emergency call system).

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That said, from your capitalization above, it looks like the hardship of living WITH "a completely dependant person" actually trumps the hardship experienced by that person, and certainly is on a whole other level compared to the trivial picadillos of a mere T4 para.

Perhaps that is your view. My point is that you've never been a completely dependent person or lived with one, he has not been partner/carer of one and therefore neither of you can really hope to understand what it's like. Just as I would be lying if I said I could realistically imagine living either of your lives.

Anyway, we had lunch together today and I brought up the subject. His response was that it would be easier for me to go and stay at my mother's. Except that is 250km away so brings about the requirement for me to take leave from work, and go and live in someone else's spare bedroom. Another excuse offered was that beds are never available on weekends so he could not go for a week. Which seems somewhat obstructionist because obviously the families who book weekends do so in advance and so if we booked in advance we could get in first. It just seems ridiculous!

My spouse's break is C3 but he is approx functionally a C4 ie can breathe but absolutely no useable arm function. He has a high-end sleep apnea machine due to a combination of SCI/ageing/weight issues. At least that is slightly quieter at night than sleep apnea machine PLUS pressure relieving mattress pump PLUS vacuum dressing pump which he had for a couple of months last year, and SUBSTANTIALLY quieter than his snoring which went on for years until he finally agreed to do a sleep study that showed he desaturated below 70% hundreds of times each night. When our daughter was a young toddler I did sleep with ear plugs, and spouse would have to wake me if she cried during the night because I could hear his voice in bed beside me but not her crying from the next room.

Yes I take your point about all the ALMOST couldn't go occasions. There was another last year when I had booked onto a Carers Association retreat and he waited until less than a week previously to try to organise a sleep-over carer which he could not get, so the day before the retreat I took over trying to organise his support and was thankfully able to contact a former staff member who agreed to do it.

Is there some rule I am missing about being the spouse of someone with high care needs that says that EVERY SINGLE TIME that I organise a major outing or event for myself (ie one that will not benefit my spouse in any way, and often not our child either), he will put off organising anything to assist him to take care of himself without me until the absolute last minute, leading to situations that I find incredibly stressful becoming the norm to the extent that I now organise such things with anxiety about whether they will eventuate already in the back of my mind.

[greybeard]

frustration, on Mar 19 2010, 05:27 AM, said:

Is there some rule I am missing about being the spouse of someone with high care needs that says that EVERY SINGLE TIME that I organise a major outing or event for myself (ie one that will not benefit my spouse in any way, and often not our child either), he will put off organising anything to assist him to take care of himself without me until the absolute last minute, leading to situations that I find incredibly stressful becoming the norm to the extent that I now organise such things with anxiety about whether they will eventuate already in the back of my mind.

Perhaps a solution would be for you to to organise the carer on those occasions.  Just a suggestion.

[frustration]

greybeard, on Mar 19 2010, 07:02 PM, said:

Perhaps a solution would be for you to to organise the carer on those occasions.  Just a suggestion.

One that I have thought of, but which seems fraught with mixed messages. Won't I then be bagged out for taking away his autonomy?

[jenny407]

I'm hesitant to write because I myself am not concerned with care-giving. Still I find it important - knowing from my friend with MS (very severe, he can't do anything any more, including speaking) and his wife. So may I very cautiously say that what graphic wrote is a point to consider. It is certainly a very difficult situation (for both "frustration" and her husband), and many things that have been said sound hard either way. But: My friend's wife is sometimes on the point of breaking down, and then there will be no alternative to a nursing home. I can't offer any sensible solutions - others here can do that better than me. But I would like to show some sympathy for "frustration".

I must say that I tend to agree with Greybeard. Not meaning it in any negative way: If I were you, I would organise carers myself and not wait for my husband to do it. Talk about this with him, of course, and explain. I think this is not mainly a SCI-matter. When my children were small and I had to go away with my class, my (non-SCI) husband would never organise anything. My wish - my initiative.

This post has been edited by jenny407: 19 March 2010 - 05:09 PM

[greybeard]

jenny407, on Mar 19 2010, 09:59 AM, said:

I think this is not mainly a SCI-matter.

I agree.  

It is more obviously a relationship/communication issue, so perhaps marital counselling would be the best place for Frustrated to seek help if no one here can speak from experience of dealing with similar issues.

[mellowgator]

gordon,

this lady has made some reasonable points. why you feel like you have to comment on them is beyond me. i don't think "frustration" should have to justify her needs to you. she clearly needs a break and should have some down time in her own home. if she was as selfish as you say she would of put him in a home long ago. i don't see why you expect her to wear a mask and earplugs just to get rest. that's ridiculous. i really thougth after her heartfelt repy to your comments you would cry uncle and appoligize for jumping on her shit. still you pick at her. you are some piece of work. just saying.

This post has been edited by mellowgator: 19 March 2010 - 05:18 PM

[allis53ca]

im thinkin "respite" is not the core issue here..maybe im just reading too far into it, but i think the real issue here is that you haven't felt like a "wife" in a very long time and the inevitable resentment has finally surfaced...in my useless opinion, you need to address the real issue here, and that is that you've had enough and the castle may be crumbling......

[mellowgator]

allis53ca' date. ='Mar 19 2010, 05:13 PM said:

im thinkin "respite" is not the core issue here..maybe im just reading too far into it, but i think the real issue here is that you haven't felt like a "wife" in a very long time and the inevitable resentment has finally surfaced...in my useless opinion, you need to address the real issue here, and that is that you've had enough and the castle may be crumbling......

this is not a happy marriage. i don't see how she can stay in this situation for long and keep her sanity. thus the need for some breathing room. i don't see how she stays as unhappy as she is. he doesn't care about her needs however, i don't blame him not wanting to go away. i certainly wouldn't want to be in a nursing home. this is a very sad situation indeed. the point of this site is to support each other not to make someone feel bad when their at the end of their rope. she came here looking for support and not to be beat up over a difficult situation. i doubt that this marriage will last.

[gordonr]

mellowgator, on Mar 19 2010, 03:08 PM, said:

gordon,

this lady has made some reasonable points. why you feel like you have to comment on them is beyond me.

Uh... Because she is reaching out for third party input?

Quote

i don't think "frustration" should have to justify her needs to you. she clearly needs a break and should have some down time in her own home.

She doesn't "have" to justify her needs to anybody. She is deliberately reaching out for the perspective of other people. I am doing her the courtesy of taking her concerns seeriously and answering them honestly.

Quote

if she was as selfish as you say she would of put him in a home long ago.

I am not implying that Frustration is particulrly selfish. All people are selfish. You , me, Frustration, everybody. It is an inborn trait along with the paradoxically contradictory traits of self-sacrifice required to preserve the species, traits which Frustration also displays.

And what makes you think she can "put him in a home"? The guy is a functionning adult. If push comes to shove, he will be called upon to define his own existence.

Quote

i don't see why you expect her to wear a mask and earplugs just to get rest. that's ridiculous.

Well, it depends on your experience of living in close quarters with other people. I for instance, am a father of four, married twenty-four years, and yes, I do wear a mask and ear plugs. So does my wife. I even have a ten year old daughter who has a very classy satin mask with closed eyes embroidered on it, which she insisted on buying to follow the example of her mom.

And my next door neighbor (also a dad) goes to sleep in the afternoon wearing those big industrial earmuffs worn with noisy tools and machines.

So maybe its not as ridiculous as you think.

But this is what I want to say to you most, and it comes from your last post:

Quote

i don't blame him not wanting to go away. i certainly wouldn't want to be in a nursing home. this is a very sad situation indeed. the point of this site is to support each other not to make someone feel bad when their at the end of their rope. she came here looking for support and not to be beat up over a difficult situation. i doubt that this marriage will last.

I'll start at the end:

Quote

i doubt that this marriage will last

I think we should be very careful of jumping to conclusions like that. There are some details missing (Frustration... how old are you? how long have you been marriied? before or after accident?) but the portrait is still pretty typical for married couples, without any reference to SCI. (I don't know how old you are either, Mellow, or whether or not you have any considerable married time or divorces under your belt. I know I have both.) The guy is pushing fifty. They have been married for several years. She is probably no spring chicken either. People start to ask themselves questions: What am I doing with my life. etc. etc. This is not unusual. It is absolutely normal and there is no reason to panic. Most of the time, when you consider the kids and the money, it becomes clear to everybody that a higher and more comfortable standard of living can be had by working through the irritants.

Quote

the point of this site is to support each other not to make someone feel bad when their at the end of their rope

I'm not sure I understand what you are calling support. But here is the result:

Quote

you go girl!

You are a very warm person. Therefore, I suspect that you would be equally supportive of her husband if he were here complaining that his wife was trying to nudge him out of the house. So what does that mean? Support is telling different people whatever they want to hear to validate their "feelings"? And then if two people are saying apparently irreconciliable things we just say "This is sad. The marriage is toast"?

I think not. I repeat. I am married. I have failed in marriage. I know life in relationships. And if you "support" one partner in a conflict, you are pointing right at the exit. If I was talking to her husband, I would be looking for the errors in HIS perception, because success in a marriage requires people being able to assess the whole unit beyond their own easiest reflex.

The whole girfriend (or best buddy ) thing of agreeing with every complaint issuing from someone's mouth, is extremely counter productive. It increases, rather than decreases, the crisis of confrontation.

In my world support means an honest enquiry and response, coupled with an optimism regarding results.

Best Regards,

Gordon

[qbounce]

Look, aren't we all assuming waaay to much here? She's is this relationship and has never for one moment said how she wants OUT. Where you are all reading this is beyond me.

All I get out of it is someone who requires a little "ME TIME" for herself, and deservedly so.

Frustrated, your man is a procrastinator, and even a little controlling when it comes to booking his own care a little to close to your travel dates. If YOU were able to get a carer to stay at home with him during your trips away, wouldn't this solve both of your needs? And, if you took control of the matter, I think that might constitute a sense of relief for your husband, as it appears to be something he clearly puts off for a reason, normally.

The only issue you may have then, is whether the carer actually shows up or not. And for that I can understand, as I've dealt with carers cancelling last minute, or not showing up at all, time and time again. Sometimes, even when a carer did show up, she was cluless as to my needs. For this reason, I could see where a full time care facillity might take some of the worry and stress out of the equation, because no matter what happens, someone will be there to oversee his every need.

Gordon was right in stating awhile ago, being an ass definately gets our attention. If he were to give sound advice, it might just get ignored altogether.

This post has been edited by qbounce: 19 March 2010 - 07:17 PM

[mellowgator]

gordonr, on Mar 19 2010, 06:58 PM, said:

mellowgator, on Mar 19 2010, 03:08 PM, said:

gordon,

this lady has made some reasonable points. why you feel like you have to comment on them is beyond me.

Uh... Because she is reaching out for third party input?

Quote

i don't think "frustration" should have to justify her needs to you. she clearly needs a break and should have some down time in her own home.

She doesn't "have" to justify her needs to anybody. She is deliberately reaching out for the perspective of other people. I am doing her the courtesy of taking her concerns seeriously and answering them honestly.

Quote

if she was as selfish as you say she would of put him in a home long ago.

I am not implying that Frustration is particulrly selfish. All people are selfish. You , me, Frustration, everybody. It is an inborn trait along with the paradoxically contradictory traits of self-sacrifice required to preserve the species, traits which Frustration also displays.





i appreciate your comments. you right she did ask for advice. we don't know her husbands side of the disagreement. i don't think you are going to change your view and i still will hold to mine. we can agree to disagree here.

And what makes you think she can "put him in a home"? The guy is a functionning adult. If push comes to shove, he will be called upon to define his own existence.

Quote

i don't see why you expect her to wear a mask and earplugs just to get rest. that's ridiculous.

Well, it depends on your experience of living in close quarters with other people. I for instance, am a father of four, married twenty-four years, and yes, I do wear a mask and ear plugs. So does my wife. I even have a ten year old daughter who has a very classy satin mask with closed eyes embroidered on it, which she insisted on buying to follow the example of her mom.

And my next door neighbor (also a dad) goes to sleep in the afternoon wearing those big industrial earmuffs worn with noisy tools and machines.

So maybe its not as ridiculous as you think.

But this is what I want to say to you most, and it comes from your last post:

Quote

i don't blame him not wanting to go away. i certainly wouldn't want to be in a nursing home. this is a very sad situation indeed. the point of this site is to support each other not to make someone feel bad when their at the end of their rope. she came here looking for support and not to be beat up over a difficult situation. i doubt that this marriage will last.

I'll start at the end:

Quote

i doubt that this marriage will last

I think we should be very careful of jumping to conclusions like that. There are some details missing (Frustration... how old are you? how long have you been marriied? before or after accident?) but the portrait is still pretty typical for married couples, without any reference to SCI. (I don't know how old you are either, Mellow, or whether or not you have any considerable married time or divorces under your belt. I know I have both.) The guy is pushing fifty. They have been married for several years. She is probably no spring chicken either. People start to ask themselves questions: What am I doing with my life. etc. etc. This is not unusual. It is absolutely normal and there is no reason to panic. Most of the time, when you consider the kids and the money, it becomes clear to everybody that a higher and more comfortable standard of living can be had by working through the irritants.

Quote

the point of this site is to support each other not to make someone feel bad when their at the end of their rope

I'm not sure I understand what you are calling support. But here is the result:

Quote

you go girl!

You are a very warm person. Therefore, I suspect that you would be equally supportive of her husband if he were here complaining that his wife was trying to nudge him out of the house. So what does that mean? Support is telling different people whatever they want to hear to validate their "feelings"? And then if two people are saying apparently irreconciliable things we just say "This is sad. The marriage is toast"?

I think not. I repeat. I am married. I have failed in marriage. I know life in relationships. And if you "support" one partner in a conflict, you are pointing right at the exit. If I was talking to her husband, I would be looking for the errors in HIS perception, because success in a marriage requires people being able to assess the whole unit beyond their own easiest reflex.

The whole girfriend (or best buddy ) thing of agreeing with every complaint issuing from someone's mouth, is extremely counter productive. It increases, rather than decreases, the crisis of confrontation.

In my world support means an honest enquiry and response, coupled with an optimism regarding results.

Best Regards,

Gordon

i appreciate your comments. you right she did ask for advice. we don't know her husbands side of the disagreement. i don't think you are going to change your view and i still will hold to mine. we can agree to disagree here. i've been married 23 years and have 2 teenaged daughters. no divorces.

cheers,

mellowgator

[gordonr]

mellowgator, on Mar 19 2010, 07:33 PM, said:

. i've been married 23 years and have 2 teenaged daughters. no divorces.

Mellow,

I'm glad to hear it.

If I might ask, how much care do you require? Who provides the care? How much time do you spend without your spouse?

In my case, I practice competitive sport which gets me away from the family about six weekends and one full week per year. But I always have to take one or two kids with me. My wife takes the odd weekend (sometimes with, sometimes without kids) and one longer vacation with one or two.

I do all of my own care, but my wife provides a lot of support through laundry, cleaning, cooking, shopping etc.

Best Regards,

Gordon

[mellowgator]

gordonr, on Mar 19 2010, 08:36 PM, said:

mellowgator, on Mar 19 2010, 07:33 PM, said:

. i've been married 23 years and have 2 teenaged daughters. no divorces.

Mellow,

I'm glad to hear it.

If I might ask, how much care do you require? Who provides the care? How much time do you spend without your spouse?

In my case, I practice competitive sport which gets me away from the family about six weekends and one full week per year. But I always have to take one or two kids with me. My wife takes the odd weekend (sometimes with, sometimes without kids) and one longer vacation with one or two.

I do all of my own care, but my wife provides a lot of support through laundry, cleaning, cooking, shopping etc.

Best Regards,

Gordon

hi gordon,

i have an good situation. i am pretty self reliant. i do all my own personal care. if a have a rogue diareah accident my husband does help me get clean. and he maintains my equipment. he does a lot of laundry.

i must admit life was a lot more challenging with the girls were small. however now that they are teenagers things are much easier. my husband works full time and lately he has only had 1 day off in 2 months. i have a housekeeper 2 times a week. we all chip in preparing meals. mostly my girls have to keep good grades., my oldest is one othe fastest runners on her hs track/xc team. this delights me being w-c bound my youngest plays goalie for a comp soccer team and i spend most of my weekend on the soccer field. yes, the truth is out, i'm a soccer mom.

frustrations situation hit home because my husband moved his 88 year old mother in with us. he didn't ask how i felt he just did it. i felt umcomfortable in my own home, this really stressed me out and i got down to a dangerous 99 lbs. finally i found an independent living situation for her and she really likes it and i have my space back.

i see my spouse after work and on weekends. we 4 are going on vacation to crested butte friday and i sit ski. i used to play tennis but my pain prevents this. but i do swim for exercise and scuba a couple of times a year. i'm a c67 quad and i have an imcomplete injury.

you seem to enjoy debating and you're pretty good at it. let's see what happens now that you know more about me. bring it on!

cheers,
mellowgator

[edlee]

Gordie old buddy,,, I have long enjoyed your posts ( not enjoyed your long posts) and find myself often in agreement with parts or all of most. Even in this thread I find a somewhat grudging acceptance of some.

So, perhaps you'll allow me this opportunity to make a small suggestion, apropos this thread,,,, If you could find it within you,, is it possible for you to respond in a way that doesn't make you come across as a,,,well,, for wont of a better term,,, dickhead?

We,, or, at least I,, have great respect for your ability to elaborate ( occasionally endlessly) on a point and bring much light to what are often dark questions. I would never want anyone to believe,, even for a moment,, that I think you ARE the aforementioned term,,, I would simply urge you to post in ways that wouldn't make other disagree with me.

Frustration,,, I have no answers for you,,, tho I do agree with the idea of looking into marriage counseling. There is obviously something between you and your mate that kept you from kicking him to the curb before,,, hopefully there is still enough of that left.

The one suggestion I could make is to try an exercise I was taught in a first year psychology course 40 years ago ( god,, has it been that long??). When you discuss these problems with your hubby,,,, do not use the word "you". Say whatever you need about "I" , but never "you". It's harder than it sounds,, but it eliminates the accusing and give the other the opportunity to not feel "guilty". As an example,, the difference between " You don't listen" and " I don't think I'm making my thoughts clear".

Gordin,, it's called non confrontational argument,,,as I remember,, I didn't do too well with it, then,,, but, hey,, I was only 18.
ed