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Post by Ath on Jul 1, 2014 1:15:32 GMT -5
I thought this deserved its own topic. I've only dated two people who lived independently (not with parents) and had 24/7 care. But I found it really difficult. Even when we I did get along with his carers, the dynamic was just too weird. For a while I thought it was worth it but then I reached a point where I couldn't handle it. Having anxiety issues and having to get to know 6 people instead of the one person you wish to date became too much. We all made mistakes and unfortunately I didn't learn a thing from it I believe it can work, but it's very hard if the pwd already has carers thay he knows very well and they have their set rutines jargongs etc etc. One of the guys told me after two months of dating that I would have to schedule his carers, hire, fire and train them. Not even a question or discussion on if I wanted to or would be able to do that. I think it's probably easier if you are already in a relationship when you need to decide if carers are needed or not so that both partners can feel equally involved in the decision. The other guy played his carers against eachother because he thought it was amusing to see them fight, giving them different shifts. He was mentally abusive to atleast one of them and he forced them to lie to me and to each other. There where long time carers who got very jelous of our relationship and also carers who refused to work when I was there -they'd show up but pretty much say to our faces that I should do it instead. If you can be independent or not also depends on if you have enough hours, and what kind of contract they have, if they are allowed to drive you etc. I believe in some areas it's even illegal for carers to help with sexual needs? Things that can prevent independency is if you let your carers dictate what you are going to do that day, I mean as an example: if carer a is good at shaving but carer b isnt, you wait with shaving until a goes on their shift. Imo you would be better off letting carer b go and hire someone who can do it the way you want. Also if you have long time carers lile +5 years its just too easy to ignore the signs that you should be friends not employer/ employee. Because eventually that person will become comfortable enough to say no to your needs and wishes. There was one carer who brought a girl with him and had sex with her on the wheelers couch when he thought he was sleeping, and I caught the same person discussing oir sex life with the wheelers best friend when he was visiting..
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Post by Maurine on Jul 1, 2014 5:40:30 GMT -5
Wow, what horrible carers!! It's unbelievable that they told you to do the care. What are they paid for?!
That's a very good topic which makes me really angry at times, too. I would struggle A LOT if my bf had 24/7 carers. I don't see how I could handle it without exploding. My bf lives on his own but he has carers from an caring agency come to his house when he needs to get dressed or to bed. When I'm there, I do the care and he tells them not to come, but they are unorganised and sometimes come anyway. I don't like them to be around, even if it's just for 20 minutes, because this already feels like too much interference in our lives. Some of them are quite nice, but I still don't really like it. He has also occasionally come someone to do the household and other tasks. I really struggle with any kinds of assistance. It's one thing that my bf must be extremely alert during the care, otherwise they always mess something up. He can't lay back and rely on them at all. He has to watch each and every step they do. But I hate those assistants who seem to somehow feel superior or identify as a sort of attendant despite their unreliability and all the money my bf pays them. One of them told me I was admirable for doing all the care on my own. I hate to be called admirable for being with that man. There isn't anything admirable about it. Lucky would be the appropriate term. He also told me what a positive attitude my bf had despite his disability. This is so patronising!
I prefer to do the carers' work because it makes me feel more independent as a couple. I don't mind it, it isn't hard work but can be very intimate. Additionally, I really try my best, so my bf can lay back and relax or sleep during caths. I don't know how and if I could handle a relationship with someone who needs care 24/7. I need a lot of private space. Also, it turns me off if he has a lot done by others, because they usually don't act as mere tools but offer their opinion and interfere in his (private) stuff. Inanimate tools like wheelchairs are a turn-on, patronising personal assistants definitely not.
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Post by Ath on Jul 1, 2014 7:03:31 GMT -5
But it's easy to get burnt as a partner having to do everything and to be the only person he trusts.
And what if you can't? I rember having to do my first trach change because the carer who was there didn't have the training. Neither had I but I wasn't bound by contract not to. I had to or he would have choked, but I never did it again after that because I was too scared. (And because he was abusive about it afterwards) Lifting, dressing washing, coughing, cathing is one thing but I would not be able to live with the pressure of being responsible if something went wrong with his breathing. (Dmd) So sometimes it was a good thing that his carers were there atleast the ones I liked and who enjoyed their job. But it was difficult never being truly alone.
It's not easy if you struggle and at the same you are trying to convince him that he is not a burden. Some "burdens" are worth it, so worth it! But there has to be a balance, it's difficult if all you do is struggle to get everyday life to work.
-Looking back I still kind of hope that if our connection and communication had been better, the carers would have been less of an issue. The more love you have for oneanother the more you can cope with I guess because atlest you can be angry at the carers together and not feel like you are stuck in the middle.
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Post by Maurine on Jul 1, 2014 8:14:13 GMT -5
What would have happened if you had not been there for the trach change? This sounds like horrible organisational skills.
I've heard of relationships failing because the pwd asked the partner to do the care too often. In our case, I do it voluntarily.
Of course it's harder the more help the partner needs, especially if breathing is involved. I think it depends on the way the whole care thing is organised (if the carers live in the same flat, if there's only one or two carers or another one every other day, if they are reliable etc.). The partners have to discuss all this stuff and find a solution. I know it's hard. :/
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Post by Pony on Jul 1, 2014 9:10:53 GMT -5
Here's my take, I never want my lover to be a caretaker. I have a caretaker come in once in morning and once at night...otherwise, I live independently. i don't want to mix the two very much. It's just not healthy for either one of us. I always tell my caretaker, who I also consider a friend, you help keep me independent. I can live just like anyone else with that little bit of help.
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Post by Ath on Jul 1, 2014 10:02:38 GMT -5
Yes it depends on how much help one needs, sometimes it is more practical if the partner does it or it wouldn't be possible to be alone at all. If you can't feed yourself for example it's nicer to have dinner alone with your partner even if the partner helps you (and even if the food goes cold )
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Post by darthoso on Jul 1, 2014 10:13:04 GMT -5
Things that can prevent independency is if you let your carers dictate what you are going to do that day, I mean as an example: if carer a is good at shaving but carer b isnt, you wait with shaving until a goes on their shift. Imo you would be better off letting carer b go and hire someone who can do it the way you want. Also if you have long time carers lile +5 years its just too easy to ignore the signs that you should be friends not employer/ employee. Because eventually that person will become comfortable enough to say no to your needs and wishes. There was one carer who brought a girl with him and had sex with her on the wheelers couch when he thought he was sleeping, and I caught the same person discussing oir sex life with the wheelers best friend when he was visiting.. Rule number one when being someone's boss: don't be a dick. Preferring one care giver to do certain tasks over another is unfortunately unavoidable. My different people had different strengths and weaknesses and trying to find people with the exact same skill sets is difficult, especially since you don't usually discover those differences until you've hired them. If you fire someone for not being good at task X, your new hire might be bad at task y. Regarding the employee/employer relationship, its hard. I tend to learn towards being more of a friend because I value the benefits of them being a friend. I call it the "give a shit factor", if something goes wrong I know that they'll be there for me. Another advantage is friends tend to be more flexible in social situations. I had 2 night care givers, one from an agency, the other was a friend I met at a party. I preferred the friend CNA when I had friends over because she could blend in easily. Whenever the agency CNA came people tended to leave thinking I needed them gone.
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Deleted
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Post by Deleted on Jul 1, 2014 10:52:21 GMT -5
That sounds awful ath. I have carers 40 hours a week and live on my own. I would not want my partner to be one of them.
If it was an issue for my partner to be around at the same time they are I'd just schedule around her. I would also never let my partner handle the hiring, firing or scheduling. I'm too stubborn for that.
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Q
Full Member
“Follow your bliss." Joseph Campbell
Posts: 157
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Post by Q on Jul 1, 2014 21:44:20 GMT -5
I couldn't handle a potential significant other being a caregiver. Even if it was part time it would bother me. If anything became an obligation it would bother me. I also have a get lost method my helpers are aware of hehe.
Having PCA's is most definitely like running a business. I do all the searching, hiring and firing myself. Up to this point in my life it has been easy because I would hire friends. Now most of my friends either have or are starting families. Working around their schedule is no longer an option. I am currently looking for PCA's with “friend appeal.” I typically don't like to hire people who have been a caregiver before or with medical training. I have found people with previous “experience” don't know what they are doing even though they think they do. This makes the training phase longer. I make it clear to employees what needs to be done. even though I can be an easy boss it's still a job and they better be ready to work. After all they are getting paid.
The most difficult part of needing PCA's is if your depending on them yet they aren't working out you can't just fire them. Sometimes you can but if you don't have anybody lined up you have to put up with them until you find someone else.
I am lucky for a person with SMA because I don't have any tubes and such. Even though my care can take time it doesn't take any medical training to do the job.
ATH keep your head up. Everything will work out.
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Post by Maurine on Jul 2, 2014 4:59:17 GMT -5
If I did all of my bf's care, I'd get less money than a professional carer. This whole system is very complicated and it all depends on the circumstances why you need it and who pays for it or where you get the money you pay from.
In our case, we always have the option of calling a carer. I don't get any pressure from my bf, let alone the carers. So he doesn't depend on me, neither do I have to regard it as my duty, and we have a lot of time alone like this.
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?
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Post by thalon on Jul 2, 2014 9:39:34 GMT -5
I have 24/7 assistance and I know it can be hard to handle. But up until it has never been a big issue. My assistants are quite used to the fact that I have intimate relationships and that they have to be flexible to provide for that. Fortunally, I have a big flat and my assistants mostly live nearby so we can always arrange private space.
I would never have the idea that one of my partners should schedule my carers, hire, fire and train them. That sounds awkward to me.
Fun fact: my current gf actually applied for a job as assistant for me. But we ended up dating ;-)
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Post by Deleted on Jul 2, 2014 15:48:24 GMT -5
I'm pretty independent so don't have paid carers but I know from my own experience that I have never had a g/f helping me with my personal care. I feel it's important to not expect the person in your life to 'become' a carer when they are with you. Having said that there may be times like from example if you need to change the bedding in the middle of the night you appreciate their help, or if you aren't well, but that's not a carer thing that's just part of being together, much like I would help them with things I am good at.
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Post by Pony on Jul 2, 2014 16:13:34 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? Maurine asks a great question....i don't object to receiving any help. actually that can be a real bond with someone, but just don't want to depend on lover for care.
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Post by jrm on Jul 2, 2014 16:17:34 GMT -5
Wow! I'm surprised at how many of the guys here wouldn't want their partners doing any caregiving, and the ladies who wouldn't want to do it. One of the wheelers I dated was entitled to over 90 hours of caregiving services per week. He would visit me for anywhere from 10 days to 4 weeks at a time, and I would do all of his care while he was here. We had no difficulty separating the romance from the caregiving, or sometimes combining the two. I will admit that there was no way I could have done all of his care on a permanent basis. But, I like my privacy. If we had ever gotten together on a long term basis, we would have cut back his caregiver hours significantly. If I had a partner who only needed minimal caregiver services, I would want to do the care myself, if possible. I guess it should be dependent on whatever the couple is comfortable with, as well as practical issues such as time, money, etc.
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Post by vegmama on Jul 2, 2014 16:39:07 GMT -5
For what it's worth, I would want to do the caregiving...hypothetically speaking. But I don't want to sound naïve because I've never been in a relationship with a PWD. I think it depends on your personality. And I think it's about what works for you.
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