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Post by Ath on Jul 2, 2014 22:11:33 GMT -5
My current partner (since what 4 years) can do most things like showering, dressing, transfers but it takes him very long time and it makes him very very tired. It's just not energy effective. He doesn't have any care hours and I do help him. When I'm not at home he waits with doing more difficult things. If he needs to be somewhere in the mornings it's very stressful. But on a regular day if he is going to be home we are maybe half done when I have to rush off to work. When he does go to work (it's been a while now) I help him with everything, other days one of his parents make sure he gets into his car. I don't know how else we could do it. If I could work from home he could be more active. But perhaps I would get nothing at all done and maybe we would drive each other crazy It's... -he could user more help, but doing little things here and there during the day, it doesn't qualify for a carer.
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Q
Full Member
“Follow your bliss." Joseph Campbell
Posts: 157
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Post by Q on Jul 2, 2014 22:15:57 GMT -5
Would you object to your gf doing anything care-related, even if she does it voluntarily, say there's a carer available you could call? How about travelling? Would you prefer taking a carer with you or have it done by your gf? If my potential girlfriend started providing care at some point she may feel obligated to continually do care. This more than likely would put some strain on the relationship. Most of what I will/could say is hypothetical because I have never had a serious relationship. In the short relationships I have had I always had everything taken care of. The short answer to your questions is it depends on the situation. If for some reason it made her more comfortable to do some very basic care I would not object. Although I would make sure she didn't feel obligated. I would be clear with PCA's this was a one time thing and don't expect my GF to continually do your job. Having a GF as a full time caregiver is a no go. Whether or not I would take a PCA on a trip with my GF would depend on how far we are traveling and what our plans are. I wouldn't want her to get tired and have my care to worry about. Once I'm plopped in my chair I don't ask for much. Although yes I still need help. If I got to the point where I let a GF do basic care (if she preferred to do some) I would be in love with her and wouldn't want to loose her because she felt obligated to help. Hope this makes sense.
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Post by Ath on Jul 2, 2014 23:05:58 GMT -5
Yeah it makes sense. Sounds sound but it's so difficult to actually do.
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Post by darthoso on Jul 3, 2014 2:30:29 GMT -5
I think it depends a lot on the level of care. From the time I'm up in my chair to bed, I'm easy as hell. My parents paid our neighbor's daughter to help me out one day while they did stuff a few hours away (this was when I was living at home between semesters and didn't have a PCA). She mailed the cash back to my parents because for the 6 hours she was here all she did was hand me a glass of water and we talked the entire time. This summer I've drafted my 8 year old niece to help me out during the day (I only wish she could drive).
The more difficult care is at morning and throughout the night. Morning I do a gtube feeding (easy as hell, just takes time), bathroom, shower, dress, get into chair. Excluding the feeding, my routine takes 35 minutes. I would always want a PCA to do this stuff, no GF.
Night all I do is another feeding, bathroom, PJs, bed (5 minutes excluding the feeding). The hard part is during the night, I need help turning otherwise I get sore as hell (some nights it is every hour, others less). I've never shared a bed with a girl throughout a night so I don't know how that would work.
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Post by thalon on Jul 3, 2014 7:55:03 GMT -5
Would you object to your gf doing anything care-related, even if she does it voluntarily, say there's a carer available you could call? How about travelling? Would you prefer taking a carer with you or have it done by your gf? I never object to any help and sometimes it's neccessary in orde to have some privacy alone. However, I'm very careful and always ask if it's really ok for her when I have the impression that it could be not right. Open communication is key. You have to be open and true about your needs and wishes and that applies to both sides. Simply expecting some behaviour without talking about it mostly leads to disappointment. Personally, I always keep my assistants "handy" - meaning within a range so that I could them at least by phone and that they can come around within let's say 15 minutes - unless otherwise agreed in advance between me and my gf. Regarding travelling, I would actually always go with both my gf and one assistant, at least for longer travels. Fortunally, it's oot a big problem to pay for the additional accomodation. If it's only one or two night, I would talk to my gf and see what she feels is better. Usually, it's quite easy to come to a common understanding.
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Post by matisse on Jul 5, 2014 16:07:10 GMT -5
Just to add a data point here.....I don't have any caregiver at home but I am about 95% independent most of the time. The 5% comes from my damn socks. I got just too annoyed getting them on and off, it would take a full 5 minutes each way. So now I have the kids do it. My wife will do it occasionally when I have a very early morning flight and she doesn't want me to wake the kids.
I also need a little extra help when I return from my travels. It's hard on my body and I have difficulty getting into bed my usual way. So for 1-3 days after I get back, my wife will lift my legs onto the bed and pull over the cover.
Traveling with the family is different. As people have mentioned above, we just don't want to bring someone along or hire someone there. It would be too much of an imposition. So I get more help from my wife with the shower and bed transfer. How much help depends on the hotel. Neither of us particularly likes this. I don't like it because it limits my own freedom, and it is a strange dynamic to be listing out the things I need, as I would with the helpers that I hire when I travel for work. For her, it's the flip side of that. This has led to occasional tension but the annoyance is still just too small compared to the inconvenience of having someone come in. So we each just deal with it. The kids also help too, doing the usual packing and unpacking that my helpers do when I travel. But there's no issue there, it's easy work and it doesn't take them much time. (plus, they're not going to get much sympathy from me since they would be just playing video games anyway.........)
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Q
Full Member
“Follow your bliss." Joseph Campbell
Posts: 157
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Post by Q on Jul 6, 2014 15:26:58 GMT -5
It sounds like Darth and I have similar needs as far as care is concerned. Although it takes me a little longer to do my morning routine. Bathroom, shower, shaving, brushing teeth, getting dressed, transfer into chair typically takes 45 minutes to an hour and a half. Once I'm up it's basic care such as feeding. Even though I don't have a G tube I have to drink three supplement beverages a day (in addition to meals.) That's easy enough put the straw in the box then hold it up to my mouth and I can gulp it down in less than a minute. Care throughout the day is basically eat and take a piss whenever it hits me (using one of those hand urinal jug looking things.) I need help to do all of this. Night time care consist of transferring from my chair into bed. Once in bed some range of motion on arms. I will then undress, put sleepwear on and roll onto my right side. I typically don't need rolled at night. On some occasions I might need repositioned that involves rolling onto my back. I will lay there for 20-30 minutes then roll back to my side. Once back on my side I usually don't need anything the rest of the night. It's not that the care is hard work. Based on the reaction of my helpers they seem to enjoy their “job”. They get paid to do my care and go to concerts, movies and other events. Most of the time we just chill. For the past few days my sister has been visiting and my 14 year old nephew has been my sidekick throughout most of the day. Just like Darth my 7 year old niece will occasionally help me. We also make art together I don't want discourage any of the Devs from trying to help their wheeler. I always try to put myself in the other persons shoes. If she works will see really feel like coming home and being a caregiver if need be. Maurine's arrangement with her dude sounds good because they can always call someone. I just wouldn't want my GF to feel stress in anyway. This is one of those situations that I can't answer for sure until I'm in a serious relationship with a Dev. Over the 4th of July weekend I was thinking of this. I can Imagine times it would be necessary to have this potential significant other help me. My friends always have... the thing is I wouldn't want it to turn into an obligation. For the Devs who do or want to care for their wheeler, other than privacy why is it so important for you to do the care?
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Q
Full Member
“Follow your bliss." Joseph Campbell
Posts: 157
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Post by Q on Jul 6, 2014 22:53:55 GMT -5
Thank you for your response tc123. That makes a sense. I agree when people help me with care it does create an intimacy or closeness. In theory it sounds great. I can imagine magical moments. A system like Maurine and her dude have sounds nice. Just wouldn't want to stress her.
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Post by darthoso on Jul 7, 2014 1:28:54 GMT -5
Keeping stress levels low I think is key like Q said. A big part of that is having backup plans on top of backup plans. When I was in college things always seemed to fall apart at the end of a semester (PCAs not showing up, etc).
Devs: how would you feel if the caregivers were roommates (early in relationship stage, no where near ready to move in)? Large 3 bedroom apartment with 2 PAs living there.
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Post by Maurine on Jul 8, 2014 7:15:45 GMT -5
Devs: how would you feel if the caregivers were roommates (early in relationship stage, no where near ready to move in)? Large 3 bedroom apartment with 2 PAs living there. That doesn't sound too bad, as long as the PAs don't show up to offer their help when they aren't called.
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Post by thalon on Jul 8, 2014 7:42:07 GMT -5
I have a similar set-up :-) My assistants aren't flatmates as such but they have their own room. I have big flat with 3 rooms: one living room, my bed room plus one room as office and for the PA's. Turns out to be quite practicable since we can have enough private space for us that way.
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TrappedWithin
New Member
Posts: 2
Gender: Male
Dev Status: Disabled Male
Relationship Status: Single
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Post by TrappedWithin on Jul 8, 2014 11:45:44 GMT -5
I don't know about you guys but I always feel guilty asking for help for anything I need..like..I don't wanna be a burden on anyone.
My problem is admitting when I need help and just ask people for it..and stop feeling ashamed or guilty about it.
Do any of you guys ever feel like this?
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Post by darthoso on Jul 8, 2014 15:59:49 GMT -5
I don't know about you guys but I always feel guilty asking for help for anything I need..like..I don't wanna be a burden on anyone. My problem is admitting when I need help and just ask people for it..and stop feeling ashamed or guilty about it. Do any of you guys ever feel like this? For me it is all about how comfortable I am with the person. Strangers are the hardest for me to ask. Getting past that feeling took me awhile but sometimes you have to ask and most people are happy to help. I'm very comfortable with my group of friends so asking them for help isn't a big deal at all. The thing that got me was when one of them said to me "buddy you know you can call anyone of us if you're in trouble, right?" Only time I've had push back was when one of my roommates/PAs quit because I forgot to say thank you for giving me a glass of water.
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Kenshin
New Member
SMA Type 2
Posts: 29
Gender: Male
Dev Status: Disabled Male
Relationship Status: Single
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Post by Kenshin on Jul 8, 2014 20:45:46 GMT -5
I don't know about you guys but I always feel guilty asking for help for anything I need..like..I don't wanna be a burden on anyone. My problem is admitting when I need help and just ask people for it..and stop feeling ashamed or guilty about it. Do any of you guys ever feel like this? me :s
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Deleted
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Post by Deleted on Jul 8, 2014 21:35:59 GMT -5
One thing I neglected to mention when I originally posted in this thread is that while I absolutely would not want or allow any SO to be one of my carers I think it's very important that she know how to take care of me. Things come up and you can be stuck in a bind and that help would be welcome. Full time though? Nope.
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