I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Spouses and Caregivers => Topic started by: Callthatloveman on March 02, 2018, 11:23:23 PM
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Gosh golly jeepers! Sometimes I get so cussing mad that everyone always wants to tell me to let them know if my husband and I need something while he's recovering from the major surgery he just had without them just offering. STOP TALKING!! You want to do something? Great! Show up at my house with groceries. Offer to take my husband to or from dialysis. Ask one or both of us out for a coffee date. Send me a cute picture of your dog. Do anything but put the weight on my shoulders to ask for help. IT'S NOT HELPFUL!!
Yes, I want help! But don't make me have to get over my pride to ask for it. And like, I get it from people who don't know us super well, but even our closest friends tell us this.
I swear to jeepers that I am not a spoiled brat, and that I am only saying this here because I can't say it to my friends and loved ones. BUT OMGEEEEEEEZ!
My husband nearly died in January...I don't care what you do...show up on my porch with your dang tap shoes on!
GAAAAAAAAAAAAAAAAAAH.
Thanks, y'all. I'm gonna go practice mindfulness or something.
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Callthatloveman, with the greatest respect, might I gently suggest that you put your pride aside and just TELL people what you want them to do?
You've said that you'd like them to show up with groceries. What if they came by with all of the foods your husband can't eat? Wouldn't you be doubly annoyed? Are they aware of the restrictions of a dialysis diet? Probably not. They would need your guidance. Help them to help you.
What would you do with a picture of their dog? How is that helpful?
Part of being a good caregiver is having the ability to muster the troops and dole out duties. Does everyone know where your husband's dialysis clinic is? Do they know what time his treatments are? People don't know how to help effectively unless they are told these things. People don't just magically come by this knowledge.
Have mercy on yourself and take advantage of all of the offers! It's not a matter of pride, rather, it's a matter of efficiency and of pulling together in difficult times.
Good luck! I hope you can put together some sort of rota where you can delegate some of the truly difficult duties of a caregiver to the very kind people who offered to help! No one ever offered any such help to me!
Practicing mindfulness is great! LOL! Good luck with that, too! :2thumbsup;
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Dog pictures make me happy!
Seriously, though. I hear you. I think the struggle and frustration is that it doesn’t feel genuine, which makes me not want to ask. I feel like a lot of people feel like they are supposed to say, “let us know if you need anything!”
Waiting five months for disability to come in really killed our finances, and I feel like it does take some amount of getting over pride to admit that we need help with money from time to time.
I’m trying to get better about asking. And I understand that there are so many people who go this alone, and I wasn’t trying to be ugly. I’m just so exhausted and feeling a bit at the end of my rope.
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Dog pictures make me happy!
Before I ended up in hospital I was employed as a "nanny" to dogs. I was in hospital for months, and really missed those dogs. So when my boss texted me and asked if there was anything he could do for me I simply replied asking him to send me pictures of his dogs. He did. It made the three months I was in hospital a little less horrid.
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Dog pictures make me happy!
Fair enough! Penguin pics make me giggle.
Seriously, though. I hear you. I think the struggle and frustration is that it doesn’t feel genuine, which makes me not want to ask. I feel like a lot of people feel like they are supposed to say, “let us know if you need anything!”
You're right. A lot of people DO say this because they can't think of anything useful to say, feel like they should say SOMETHING, assume you realize they're not making a genuine offer but offer anyway because that's just what is done. But maybe just ONE person really does want to help. I don't know these people and therefore don't want to assume anything about them as that would be unfair, but is it possible that just one person DOES mean it?
Waiting five months for disability to come in really killed our finances, and I feel like it does take some amount of getting over pride to admit that we need help with money from time to time.
That's what being chronically ill in America can do to you...kills your finances. And yes, it DOES take some amount of getting over pride to admit to needing help, and we as a society should really do better. It is vastly unfair that illness puts you in a financially precarious position. I mean, no one ASKS to be ill, right?
I’m trying to get better about asking. And I understand that there are so many people who go this alone, and I wasn’t trying to be ugly. I’m just so exhausted and feeling a bit at the end of my rope.
"I wasn't trying to be ugly." I haven't heard that expression in SO long! That's music to my native-Houstonian ears! Anyway, that feeling of exhaustion, frustration and fear is well-known here on IHD!
I do hope you can find some help, or at least, I hope that your situation improves. Those of us who are the patient and not the caregiver know very well that kidney failure/dialysis affects the entire family.
http://www.stateofdigital.com/wp-content/uploads/2016/09/Penguin.jpg
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MooseMom hit on the right word. DELEGATE! A Good Manager Delegates tasks. The trick is you have to spell out those tasks as they do not have a clue what you need done.
They all want to help somehow, but not having any clue what needs to be done, what you need help with, they are simply waiting to be TOLD what to do. Start assigning tasks. Once you make that first assignment the next one will become much easier. Getting over your reluctance to ask is you hardest task for yourself.
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Thank you both for the encouragement!!
We have one friend who I think might be sincere about her offer to help, and I think that this week I will ask her for something specific.
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Dog pictures make me happy!
Before I ended up in hospital I was employed as a "nanny" to dogs. I was in hospital for months, and really missed those dogs. So when my boss texted me and asked if there was anything he could do for me I simply replied asking him to send me pictures of his dogs. He did. It made the three months I was in hospital a little less horrid.
It feels silly to me sometimes, but on my hardest days I put out requests for puppy pics on fb.
Three months of hospital is rough. My husband really struggled with the two weeks he was in for his gallbladder, and honestly I feel like they discharged him too soon. He has had nearly thirty hospitalizations since summer of 2014 and I really feel for you being hospitalized for so long.
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Dog pictures make me happy!
Fair enough! Penguin pics make me giggle.
Seriously, though. I hear you. I think the struggle and frustration is that it doesn’t feel genuine, which makes me not want to ask. I feel like a lot of people feel like they are supposed to say, “let us know if you need anything!”
You're right. A lot of people DO say this because they can't think of anything useful to say, feel like they should say SOMETHING, assume you realize they're not making a genuine offer but offer anyway because that's just what is done. But maybe just ONE person really does want to help. I don't know these people and therefore don't want to assume anything about them as that would be unfair, but is it possible that just one person DOES mean it?
Waiting five months for disability to come in really killed our finances, and I feel like it does take some amount of getting over pride to admit that we need help with money from time to time.
That's what being chronically ill in America can do to you...kills your finances. And yes, it DOES take some amount of getting over pride to admit to needing help, and we as a society should really do better. It is vastly unfair that illness puts you in a financially precarious position. I mean, no one ASKS to be ill, right?
I’m trying to get better about asking. And I understand that there are so many people who go this alone, and I wasn’t trying to be ugly. I’m just so exhausted and feeling a bit at the end of my rope.
"I wasn't trying to be ugly." I haven't heard that expression in SO long! That's music to my native-Houstonian ears! Anyway, that feeling of exhaustion, frustration and fear is well-known here on IHD!
I do hope you can find some help, or at least, I hope that your situation improves. Those of us who are the patient and not the caregiver know very well that kidney failure/dialysis affects the entire family.
http://www.stateofdigital.com/wp-content/uploads/2016/09/Penguin.jpg
Penguins are great! Here’s some more Houston for you... “y’all” “fixin to” “the feeder” “it’s Rodeo time!!” ❤️
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You know what? I lived in London for almost 20 years, and I never did drop "y'all" and "fixin' to". Needless to say, most people can't quite work out where I'm from.
Never did have much cause to say, "It's rodeo time," though!
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My suggestion to Callthatloveman would be this. Appoint your closest friend to delegate. Make a list of Helpful things my friends can do.....just a thought.
I wrote this and then read what everyone else said.....I see we sing inunison. Moosemom....gosh we think alike on so many levels.
I laughed when i read that penguin pictures make you smale, laugh. My all time favourite it the little clip of one penguin slapping another.....now to go click on the one you sent.
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Waiting five months for disability to come in really killed our finances, and I feel like it does take some amount of getting over pride to admit that we need help with money from time to time.
I was in the same boat, financially. When I got to the absolute end of my rope, I swallowed my pride and went to the "friends" who said "If you need anything..." to ask for a loan to just keep a roof over my head, they all disappeared. Family too. Nothing like a fatal diagnosis to show you who your true friends are.
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I totally understand and share the frustration caused by people saying "just ask if you want anything." When my husband was in the hospital, several friends "out of the blue" invited me over for dinner or asked me to go to a restaurant with them. It was wonderful. Fast forward to home HD, though, and it's the old "ask if you need anything.". Another problem I have encountered is friends offering to come over and stay with my husband to give me a break. Of course they can't during an HD session, and at other times, we can both get out. Perhaps one solution might be to mention to friends when they are not taking about helping that it sure would be wonderful to have __________ once in a while (fill in your own needs -- dinner fixed, groceries bought and delivered, whatever!) People are well meaning but don't get it, so maybe that would plant a seed.