Exceptions to the caregiving rule?Feb 18 04:14
One of the first things you’re told after an injury, when you’re learning how to take care of yourself again, is to never - and I mean never - let your romantic partner help you with your cares; never let them give you a shower, never let them get you dressed, never let them do anything a PCA does.
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1. Jaywheeler | Feb 18 08:58
Jay from australia with CP here! im not in a relationship at the moment due to a few reasons one of them being this issue. i need alot of care and couldnt see my 2 week old relationship with my girlfriend going anywhere if she had to do what i needed help with (wiping my ass). lets face it your making out with your lover and your about to get it on and you turn to them and say "do u mind if you help me on the toilet first?" doesnt sound very romantic unless u have a fetish for that kinda thing. i dont have a answer to how to get around it but all i can say is it wouldnt work for me.
2. Tiffiny | Feb 20 01:50
I think I'm in the same boat, Jay. For me PERSONALLY, I get way too embarassed - and neurotic - for my lover to do bowel/bladder....but the "lighter" cares I think aren't as big of a deal.
3. Nancy | Feb 23 09:59
A PCA would be wonderful, but the cost of hiring one would put a far greater strain on our marriage, than having my husband assist me. How do couples afford a PCA?
4. Cathy | Mar 02 10:46
I completely see it from a different angle. I am the spouse of a quad of 3 yrs and because of all the nightmares of inadequate caregivers I have nearly lost him several times. He has been in hospitals and rehab centers since June 2010 due to incompetence of caregivers. I would rather deal with some embarrassing moments than not have him in my life, besides if the roles were reversed, he would be right next to me doing the same thing for me.
5. ericsh123 | Mar 05 10:21
It should absolutely be the no.1 rule. However in many cases there is no other caregiver. My wife is now my caregiver since my accident 2 yrs. ago and she has turned into just that a caregiver. I no longer have a wife, what remains of her is resentful and spiteful torwards me, yet she constantly takes care of me, I believe out of some sense of responsibility. She would never admit that she now resents me, however to me it is quite obvious. As well, she has taken over everything, as if I'm just another chore for her. I have very little say in the things we do and although I've offered more than once to take care of the bills and try to help out. I rarely even see a bill much less am I aloud to handle anything. I no longer have a wife, she has turned into a controlling caregiver and has left behind any intimate feelings for me, mostly I feel like just more luggage that she drags around. When confronted about these things, it's always denied. So, yes definitely pass on that warning.
6. Robert | Mar 07 05:14
I have MS (30 years). Been married 25 years, and my wife has provided assistances when necessary. Only in the last two years have I really needed hands-on help with meal prep, personal grooming (trimming nails). I think the key issue for us is the long jeopardy of our marriage prior to needing hands -- on assistance. A second success factor is open communication, expressing gratitude for the assistance, ongoing relationship maintenance.
7. Robert | Mar 07 05:34
Correction to my blog entry: I have had MS for 30 years. Been married 25 years, and my wife has provided assistances when necessary. Only in the last two years have I really needed hands-on help with meal prep, personal grooming (trimming nails). He go to sleep I think the key issue for us is the long jeopardy length of our marriage prior to needing hands -- on assistance. A second success factor is open communication, expressing gratitude for the assistance, ongoing relationship maintenance
8. Tiffiny | Mar 08 01:40
As the comments here prove, this is a hard subject on many levels, and is not the same for everyone. When will the robot PCAs arrive? :)
9. Ace | Mar 11 06:08
Been injured for 14yrs now, yes it's hard on my wife of 31yrs, but we make the best of it. I'm almost totally independant but illness is hard on everyone. If the roles were reversed, I'd be there no matter what. I do try to limit what she does for me because your fears are very true, but in some cases so is real love.
10. Chalice845 | Mar 23 10:02
I am in this boat at the moment and have lost my husband because of it. He now takes care of me but we don't have the intimacy or love that we once did because I have become another job. Literally. It's so sad because we were so close and I never wanted him to be put into this position but we didn't have a choice so he started taking care of me and now there is a wall where I once had open arms. It's the most painful thing I've ever had to deal with and I know it is for him too. He's tired and my needs never end.
11. A. Bailey | Apr 01 08:06
Well after reading other comments I feel even luckier than before. It is different for everyone & it is also impossible to avoid completely. Open communication is a VERY important key, in any relationship for that matter. I'm 28 & was diagnosed with a C-6/C-7 complete SCI when I was 15. I've been monogamous for almost 7 years with someone who knew me before I was disabled. We were best friends for years after my injury & now we're intimate. He takes care of me more than my caregivers ever do, I love him for that but it does bother me a bit at times. I feel bad 'cuz its not his job he has one already! That's not how he looks at it though, so I try to get as much as possible done when he's not around & when I know he's on his way I try to make sure my caregiver has most of my needs met before he shows up. I feel lucky to have him!
12. Tiffiny | Apr 01 09:48
@ Chalice - *hugs* and <3
13. nerdypsy | May 01 10:57
From my experience as a person with a congenital disability who has had a few relationships, I have learned that your partner first & foremost is your romantic partner. BUT part of the role as a partner with you, a phys. disabled adult, is having to understand you may need help with caregiver roles at some point(only if you normally use caregivers). The reason why I say this is because you & your partner will have physically intimate times & during those times, you will need some type of assistance. The assistance may be as simple as transfer out of your wheelchair to dressing/undressing to clean up. These tasks that fit a typical "caregiver" role can also be very romantic and highly erotic no matter what your ability level is. Also, if you are in a relationship with someone, your partner should be willing to accept all of you, which includes everything related to your disability.
14. nerdygirl | May 01 11:04
In the end, my personal preference is to have an outside caregiver 80% of the time so my partner and I can complete both of our daily responsibilities. In addition, it allows me to be independent and my partner freedom to have a guy's night/weekend out without having to come back to help me. The other 20% of the time, my partner takes on a caregiver role for times that we want to escape the rest of the world and be in our own little world. For other PWD who may be battling with this decision, I really think it is a topic that is unique to the partners involved and the overall dynamics of the relationship.
15. mizrob | Jun 02 06:58
I think this varies... did relationship exist before or after the disability? I was married when I was dx'ed with MS, the ex ultimately couldn't handle it. My current SO has always known me with MS/walking difficulties - and now I use a chair and there've been no issues. Communication is still something thats important, as well as having open eyes to all possibilities. Yes I've had bladder issues, he's been really understanding and tolerant. I still do self care with minimal help - mostly related to sometimes needing help getting up from the toilet. Somedays fatigue is tough. I think if it ever gets to point where I can't self care, I'd want a PCA for that reason, not to overload him with stress. I'm guessing?? medicare would help with that to some degree?
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Tiffiny Carlson is freelance writer and writes the “SCI Life” column for New Mobility. She's also a C6 quad from a diving accident that occurred when she was 14 years old. A lifelong resident of Minneapolis, Tiffiny has been a writer in the disability community for over 10 years and writes for several publications and blogs, as well as her personal blog BeautyAbility. Her work has also appeared in mainstream publications such as Nerve.com and Playgirl.