18 replies to this topic

[DarkAgdistis]

Hi,

I'm a para, living with my gf for 5 years now ( and knowing each other for 10 ) and since we moved in, I have decided that I would hire a nursing company for the Mr Brown thingie three times per week. MY gf does it when we go on holiday and she doesn't really have a problem with that.

The problem lies in the fact that only 1 out of the 5 nurses sent by the nursing agency is cleaning my butt properly ( fresh, I know ... ). Of course, it's not like a piece is remaining but it's either clean or not : it can't be in between.

As a result, my gf is more and more asking me to get rid of those nurses and she wants to do it herself. On one hand, I understand her argument : what's the point in hiring/paying a nurse if she has to check every time if I'm clean ( and has to wash me again very often ) . On the other hand, I tell her she's my gf, not my nurse.

Of course I did complain MANY times to the nurses but now they simply see me as a very difficult patient ...

How could I have the job well done ?? did you also have situations where the nurse doesn't even know how to clean ?

[Bevan-L]

Sorry if i've got this all wrong, but howcome u cant do it yourself?

[cyclops12]

Bevan-L, on May 14 2009, 03:05 PM, said:

Sorry if i've got this all wrong, but howcome u cant do it yourself?

this has to be a joke
cant belive what ive just read [ the op's post ]

Edited by cyclops12, 14 May 2009 - 06:57 PM.

[Trinity]

cyclops12, on May 14 2009, 07:35 PM, said:

Bevan-L, on May 14 2009, 03:05 PM, said:

Sorry if i've got this all wrong, but howcome u cant do it yourself?

this has to be a joke
cant belive what ive just read

I think that it is a very fair question. Looking at the OP's level of injury there should be no reason why he can't do it independently IF sci is his only issue

[cyclops12]

trinity, on May 14 2009, 07:40 PM, said:

cyclops12, on May 14 2009, 07:35 PM, said:

Bevan-L, on May 14 2009, 03:05 PM, said:

Sorry if i've got this all wrong, but howcome u cant do it yourself?

this has to be a joke
cant belive what ive just read

I think that it is a very fair question. Looking at the OP's level of injury there should be no reason why he can't do it independently IF sci is his only issue

sorry trin that came over wrong
i ment i cant i cant belive the first post , like Bevan-L said why aint he doing it himself

Edited by cyclops12, 14 May 2009 - 06:53 PM.

[Trinity]

cyclops12, on May 14 2009, 07:51 PM, said:

trinity, on May 14 2009, 07:40 PM, said:

cyclops12, on May 14 2009, 07:35 PM, said:

Bevan-L, on May 14 2009, 03:05 PM, said:

Sorry if i've got this all wrong, but howcome u cant do it yourself?

this has to be a joke
cant belive what ive just read

I think that it is a very fair question. Looking at the OP's level of injury there should be no reason why he can't do it independently IF sci is his only issue

sorry trin that came over wrong
i ment i cant i cant belive the first post , like Bevan-L said why aint he doing it himself

Aaah ok sorry! my mistake

[cyclops12]

no problem lol
it did look like i was sayin Bevan-L was having a joke
still in shock at the OP'S post lol

[DarkAgdistis]

Why I can't do it myself ?

Simple : not only my SCI is at T6-T7 but also my arms and back have limited movement ... any other question ?

Edited by DarkAgdistis, 15 May 2009 - 07:08 AM.

[Trinity]

Do you have to go through an agency? Can you advertise and employ your own carers and train them yourself in exactly what you require doing? That way you may not only get the job done properly but you can build up a good relationship with the carer. If you have come across as difficult then you may find that the nurses feel uncomfortable coming in to care for you and are actually just trying to get the job done as quickly as possible. Also, do the nurses that come in have experience in sci and actually understand the importance of what needs doing? Exposure to sci is minimal for most nurses outside the spinal unit setting. Try and be more constructive than critical with the nurses that visit, a good rapport is essential.

[qbounce]

I had a problem before with one nurse, then simply asked her in a polite way to make sure it was totally clean the next time so I didn't have any "skid marks" in bed.--lol

btw, I take a shower after my bp, and this really helps in making sure I'm totally clean.

But, at the end of the day, it's YOUR responsibility to make sure your care is done properly. Be your own activist, and if you feel a nurse hasn't cleaned you properly (finished to quickly), simply tell her you've had some problems with others previously not doing a proper job, and ask her to do it once more for your security.

[cyclops12]

DarkAgdistis, on May 15 2009, 08:06 AM, said:

Why I can't do it myself ?

Simple : not only my SCI is at T6-T7 but also my arms and back have limited movement ... any other question ?

sorry !! the post makes sense now

[Spinner]

Speaking as a girlfriend here, if she is willing to help you why not let her? I want to help my man because he is my man. No other reason, no ulterior motives, I love him and want to be able to do these things for him.

Edited by Spinner, 21 May 2009 - 11:18 PM.

[keidra]

I do all of my fiance's bowel programs for him , I stimulate him and give him suppository an then stimulate him while he is going , to help with the dysreflexia and all !! i clean him u afterwords and I do all this because I love him and I want to help him in anyway I can !!!

[edlee]

It is awesome that you guys ( spinner and keidra) are happy caring for your men,,, unfortunately that is not often the case,,, at least not on a regular basis. Most find that separating carer and wife functions is essential for long term relationship.

It's often very important to the SCI person, as well. Keeping those roles separated gives them a sense of having more control over their own bodies. You are less likely to complain to someone you love,, and it can cause tension that noone needs.

I'm not really sure about the system in the UK, but I believe you can do as Qbounce suggested and it will be paid for. The problem would be with recruiting and training. That's why most people go with the companies that offer the service.

Softening you manner when asking for a bit more (or better) service might be difficult for you,,, but will most likely get you better results.

Good luck
ed

[moeski62]

Hi I am the girlfriend of a c4 complete and I have care for him since his accident on 6/21/08. He has been admitted to hosppital twice with pnuemonia both times I had to go with him and train the NURSES because they didn't know how to care for someone who had a spinal cord injury.
They didn't clean him, turn him, give him a blanket when he was cold ( he can't control him temp) had to wait 4 hrs for pain medicine, was given his sleeping pill at 3AM he called me and told me at 3am to get him the HELL out of there. He got several sores on his feet, his bottom, bruises down his back sores on legs.......I trust NOONE to care for him but ME. I do it 24/7 I know he is safe and being cared for with dignity and most of all LOVE....It exhausting work but he is in better hands with me then any hospital or any other nurse. I do his bowel program He doesn't feel confortable with anyone doing it but me......I thought I would feel unconfortable doing it but you know what?....It doesn't bother me at all.....sometimes the best care for someone is the person who loves them and who truly knows waht the person needs and how they took care of themselves before there accident. I get paid from t he county to care for him its called In home support services the maximum hours you can get is 283 which he gets. It pays $11.50hr medical dental and vision its seiu521. i quit my high paying job and desided to care for him fulltime. I wish you and your girlfriend the best............

DarkAgdistis, on May 14 2009, 07:02 AM, said:

Hi,

I'm a para, living with my gf for 5 years now ( and knowing each other for 10 ) and since we moved in, I have decided that I would hire a nursing company for the Mr Brown thingie three times per week. MY gf does it when we go on holiday and she doesn't really have a problem with that.

The problem lies in the fact that only 1 out of the 5 nurses sent by the nursing agency is cleaning my butt properly ( fresh, I know ... ). Of course, it's not like a piece is remaining but it's either clean or not : it can't be in between.

As a result, my gf is more and more asking me to get rid of those nurses and she wants to do it herself. On one hand, I understand her argument : what's the point in hiring/paying a nurse if she has to check every time if I'm clean ( and has to wash me again very often ) . On the other hand, I tell her she's my gf, not my nurse.

Of course I did complain MANY times to the nurses but now they simply see me as a very difficult patient ...

How could I have the job well done ?? did you also have situations where the nurse doesn't even know how to clean ?

[edlee]

Just wondering, Moe,,, is that 283 hrs a month,, a Quarter,, or a year?
ed

[cheddar]

moeski62, on May 28 2009, 02:13 PM, said:

Hi I am the girlfriend of a c4 complete and I have care for him since his accident on 6/21/08. He has been admitted to hosppital twice with pnuemonia both times I had to go with him and train the NURSES because they didn't know how to care for someone who had a spinal cord injury.
They didn't clean him, turn him, give him a blanket when he was cold ( he can't control him temp) had to wait 4 hrs for pain medicine, was given his sleeping pill at 3AM he called me and told me at 3am to get him the HELL out of there. He got several sores on his feet, his bottom, bruises down his back sores on legs.......I trust NOONE to care for him but ME. I do it 24/7 I know he is safe and being cared for with dignity and most of all LOVE....It exhausting work but he is in better hands with me then any hospital or any other nurse. I do his bowel program He doesn't feel confortable with anyone doing it but me......I thought I would feel unconfortable doing it but you know what?....It doesn't bother me at all.....sometimes the best care for someone is the person who loves them and who truly knows waht the person needs and how they took care of themselves before there accident. I get paid from t he county to care for him its called In home support services the maximum hours you can get is 283 which he gets. It pays $11.50hr medical dental and vision its seiu521. i quit my high paying job and desided to care for him fulltime. I wish you and your girlfriend the best............

My mum would love to read this. She cares mainly for my dad on her own, with the exception of carers coming in the mornings to give him a wash or do the bowel stuff. They often make mistakes, don't clean him up, don't get it all out etc. On a few occasions they have injured him - not intentionally I know - but they just show a general lack of care. My mum has gone over and over and over with them how to do it. She's demonstrated how to do it and written notes for the newbies. She now has a couple of really good ones who know what to do and do it properly but unfortunately they don't work full time so she gets different ones turning up each day and some of them are just useless.

My dad is in hospital now with his 3rd bout of pneumonia and she had to demonstrate to the nurses how to cough him properly (does anyone here do that by pushing on the lungs to induce a cough?) and they didn't do it right sending him back to the ICU with a collapsed lung.

Everyone loves to say "if you want something done properly, do it yourself" but the fact is that for full time carers like my mum and many people on here, you can't do it all yourself because you will physically wear out. That's why you hire carer's or nurses.

My suggestion to the OP is to get your girlfriend to demonstrate how you would like things done for the carer's next time they come in. Get her to show them step by step and even write a step-by-step list if you have to. Give them a chance to learn your way of doing things and if it doesn't improve keep going back to the agency and request different staff.

This is just what my mum has done and it's worked for her. It might not be any good or you might have already tried it. It's just a suggestion

[moeski62]

283 hrs per month at $11.50 per hour

edlee, on May 28 2009, 04:22 PM, said:

Just wondering, Moe,,, is that 283 hrs a month,, a Quarter,, or a year?
ed

[edlee]

You're certainly not getting rich on it, Moe,,, but at least you know he's safe.

It is a fact that the vast majority of nurses have no knowledge or experience with SCI, or the problems that occur with it. They are doing a job, for which they are often unprepared, and occasionally unhappy.

I think it fortunate that there is a system in place in your county, that allows you the opportunity to do the caring yourself. I hope you continue to find it to be a good thing. Unfortunately, your situation is not available in most of the rest of the country,,, I would love to see it become so.
ed