I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis - NxStage Users => Topic started by: Angiepkd on May 10, 2013, 06:42:24 PM
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Hi all. I am feeling a little overwhelmed with all my medical issues lately. My husband is currently working 2 hours away, and has been driving back and forth to be my helper. He is exhausted and I am worried about him doing that much driving. It would be so much easier on everyone if I just went to a center for a while. Has anyone ever taken a break, or given their partner a break? Or dialysed alone? My treatments are pretty uneventful. I just need to be able to pull my needles, which I am going to practice this week. My buttonholes are at weird angles, so it will be hard to do one-handed. Just tired of being a burden. I am always the strong one who takes care of everything. I am not adapting well to needing help. Any thoughts are appreciated!
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Shhhhh......I dialyzed alone even though according to my clinic, I had a partner available. I cannulated myself and once I learned to pull my own needles, I was good to go. But this was about a year into it, when I knew that my BP was completely stable during treatments. I wouldn't have tried it in the first few months because I still had times when my BP dropped out of nowhere.
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Thanks, cattlekid! I have no BP troubles and think I have a good dry weight for myself. Took off 22 pounds of fluid over the first couple months. I am going to figure out how to get those needles out this week. Then will have to convince my hubby I can manage alone. His project will last for a few more months and then he will be closer to home. I am feeling better already by having a plan.
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((((((((Angiepkd)))))))) Im glad your feeling some better "with help from a friend"... :2thumbsup; It made me feel so bad hearing how you feel about being a burden. My hubby feels that at times it that makes me sad too. It may be hard sometimes, but still, we do it out of love. It will be good to get the last part of your 'on your own' ability done, and i know others do that alone, but 'mabie' you could still have someone close for extra comfort??? And, dont feel bad to go to center if you need to!!!!! Remember, lots of people do that when they travel, or as their norm!! (as you have also done) and do well, so dont feel bad if you need to do that. I know we get to be 'die hard' NxStagers ;) but you can always go back!!!!!!!!!! Or, even go incenter for a week, see how ya feel, do a treatment home (like an extra????) see how you feel about it, but keep your 'chair' at the center incase you just dont feel comfortable as you thought. I really dont know about that, just some thoughts... Sending :grouphug; and :pray; and best wishes...
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Thanks, boswife! It is good to hear from a caregiver. I know my husband would continue this crazy schedule forever, but I can see the toll it is taking on him. He looks tired. He falls asleep the minute he sits down. I feel so guilty. And since I am the "fixer" in my family, I am going to fix this before it gets worse. I have many close by people to call if I get into trouble, including a neighbor who is a nurse. All have offered to come if I need them. I am not quite ready to give up my NxStage freedom, so I am going to try and figure out how to make this work for both of us. Just need to figure out how to convince hubby to stay out of town instead of driving in every night. That may be the toughest part of all! You caregivers deserve a break. I didn't realize how hard this was going to be for you all. Thanks to you for doing what you do every day! :cuddle;
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I don't know ohw often you dialyze but maybe you could go in centre or one or two treatments a week, just to allow him a one or two times he could stay where he works? That would definitely be an option for us if I needed the break as a care partner but we're Canadians and so that's a whole other layer to the discussion.
As a care partner, there's no way in Hades I'd not be here. The "what if" conversations I'd be having with myself would negate any rest I was supposed to be getting. I know there are lots of people who dialyze at home by themselves so I'm not saying it can't/shouldn't be done, but it absolutely wouldn't work for me.
I hope that makes sense. And again, please don't think I'm criticizing you at all. I understand completely where you're coming from. But as you said, be prepared that your hubby may just say flat out no way.
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It may not be a concern for you Angie but I think you may want to think about. How will you get home if your in-center and feel horrible?
When Ed first started dialysis he was doing in-center there were a few times that I needed to drive him home because the techs took too much fluid off. In the 6 or so months he was at in-center I had to drive 5 times (not many but Ed's an ox) This happened when Ed would come in AT his dry weight and some tech would take of 1-2 kilos even though Ed told them not to.
Just something to think about. Hope you figure out a good solution.
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Thank you all for the replies! My husband has refused to take a break. I can't force him to stay out of town, so I guess I have to deal with it. I have a couple more weeks of getting my nephew off the bus, then I can at least get started with my treatment a little earlier. Maybe be almost finished when he gets home, then he can help pull my needles and be in bed by a decent hour. We will see how that goes.
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Many have dialyzed at home without incident HOWEVER all it takes is one problem and you could be dead. How would he feel then?
We have my daughter as a backup. Right now my wife is working crazy hours and my daughter volunteered to come over a few days a week to help out. You really do need someone there just in case. But to be honest I haven't had one incident over the past 3 1/2 years that I couldn't handle myself.