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Author Topic: "I want to help" -- what do you say?  (Read 7992 times)
cherpep
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« on: November 19, 2008, 09:51:43 AM »

I feel like I keep having the same conversation, and was wondering how others handle it.

Any relative or friend (not the sister who you can say anything to, but an aunt or cousin that you see perhaps twice a year) - "How are you doing?"
Me - "Good - hanging in there, thanks!"
Any relative or friend - "I'd love to help you - what can I do to help you" -or- "If there's anything I can ever do...."
Me - "Thank you, I appreciate it.  If I need you, I'll give you call"

The thing is, I could really use some help, I just don't know what to say.  The kind of help I need is to have the floor swept or tub scrubbed.  I love when people bring over a meal - that is a huge help.  But, am I gonna ask for it?!  No way.  With working and trying to beat this disease, all my energy is spent!  If I do get a burst of energy, the last thing I want to do is clean the house - I'd rather spend that good time with my family, who so rarely gets to see me like that.  I want to do something fun, not a chore.  But, how do you tell people that?  I guess it wouldn't matter, I'd be uncomfortable having someone I rarely see come in and scrub my tub anyway. 

The best help is from the people who don't ask, they just do.  They just show up with some extra food they cooked, frozen in bags, ready for you when you're ready for it.  That's wonderful.  I just don't know what to say to those other folks.  What do you guys say?
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kitkatz
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« Reply #1 on: November 19, 2008, 10:15:41 AM »

I had the same problem when Victor was hurt.  Yes I could have used some help.  Even if it was someone coming over and sitting and talking to me to keep me cool and calm. But people just do not know what to do in these situations.  Tell them. I wish I has asked for meals and for help.  Slogging through on your own just makes you tired and cranky. 

If you want just email these friends and say I could use a meal now and then. Or something to pop into the freezer I could use later.  Or how about a coupon for a free house cleaning service.  One day of a bright clean house would be awesome. 
I wish I had told people I needed help. I think I would have had an easier time with everything.  Good luck.


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« Reply #2 on: November 19, 2008, 10:26:02 AM »

Cherpep, you have learned an important lesson.  Next time a friend is down....don't ask....just do.  It makes people feel good to ask but they hope you say "nothing".  If people see a need they will fill it if they have learned what you have.

Next time you get a burst of energy just go scrub the tub.  That will make you feel even better.

                                                          :cuddle;
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cherpep
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« Reply #3 on: November 19, 2008, 10:26:34 AM »

I guess before I'm able to say what I need help with, I have to able to accept it.  That's tough to do.  It shouldn't be, but it is.  

I have an aunt, love her to pieces.  She's actually only about 10 years older than I am.  She actually got upset and sent me a steaming email because I had not told her what she could do to help.  I thought that was the weirdest thing.  I did tell her that a meal was always helpful, it allows me to rest or use that cooking time to do something else, not to mention the monetary part of it.  So, she decided to bring a meal over 1 day, called and told me the time she would be there - she was picking it up from a restaurant.  It just happened to be a day that we were attending my daughter's concert, and needed to leave the house early (before she was arriving).  She was very upset that we wouldn't wait around for her delivery.  What could I say?  She could not come earlier, and she did not offer another day.  I got the reply - I guess you just don't need my help.  Geesh!!
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cherpep
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« Reply #4 on: November 19, 2008, 10:28:06 AM »

Rerun - that's what I do now.  I spend my weekends cleaning my house.  I wish I had more time with my family, though. 
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okarol
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« Reply #5 on: November 19, 2008, 10:49:47 AM »


I have a tough time accepting help too. I love to help others though.

It's good to have numbers to call when you REALLY need help. That's what I would tell people. "Can you write down your cell phone number so I can keep it when I need someone to call?"
Just having those numbers made me feel like I had people to fall back on if we did need a meal or ride or something. My plan was to give them to my sister so she could call whoever had offered to help during Jenna's transplant. She did actually help arrange school rides for my other kids, and a few meals dropped off.

As far as day to day help - there's nothing wrong with telling people "Sometimes the fatigue gets me down. Cooking and cleaning keep me from spending time with my family. If you have any helpful suggestions, I'd love to hear them." Then wait and see if you get any good offers.

Your aunt sounds like one of my relatives - she has to do it HER WAY - and it's more trouble than help. Everyone is different. That's why it is hard to take any help you can get. It sometimes isn't helpful!
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
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cherpep
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« Reply #6 on: November 19, 2008, 10:56:29 AM »


"Sometimes the fatigue gets me down. Cooking and cleaning keep me from spending time with my family. If you have any helpful suggestions, I'd love to hear them." Then wait and see if you get any good offers.


That's very good.  I will remember that.  Thanks!
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twirl
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« Reply #7 on: November 19, 2008, 02:28:42 PM »

it is so helpful to have dinner taken care of
I would say food always works
I mean you do not have to plan,  buy , prepare or anything probably just heat and eat
I used to give people salads from Jack in the box
they stayed in the fridge all day at school and then the person took them home
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monrein
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« Reply #8 on: November 19, 2008, 02:41:49 PM »

For the cleaning help part, I think you could tell people who offer that the hardest thing is having no energy and so the housework is always behind.  You could say, what would really help me is if you and FRIEND X, who also offered to help, could come over the same time and give me a couple of hours of housework assistance.  I say this because housework sucks at the best of times (for me anyway, although I like my house really clean) and two people working together makes the time go faster.

Grocery shopping with a list is also something that most people are able to do.  I used to help out (before dialysis BTW) with gardening chores or laundry for friends or neighbours in need.

Make a list of chores you could use help with and when someone asks, give them a list, broken down into manageable bits, and say that if they really mean it then these are some suggestions.  I would also say that if they find they aren't able to do any of these things, you appreciate their good thoughts and you understand.  (Even if you don't really).
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
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« Reply #9 on: November 19, 2008, 04:42:28 PM »

cherpep
I had an idea put someone in your place and ask yourself what you could and would be willing to do for them
I'm not doing any tubs -- my husband does ours -- but I'd be glad to send him over :cheer: :cheer: :cheer:
I like cooking and running errands and taking care of children and pets --- I know your children are not very little
I like tutoring - and I could mend any mending you might have
mainly, I would like to be there to know you as a friend and to know someone I know - really understands how I feel
we could talk and laugh for hours
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kitkatz
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« Reply #10 on: November 19, 2008, 05:00:55 PM »


mainly, I would like to be there to know you as a friend and to know someone I know - really understands how I feel
we could talk and laugh for hours

Amen to that one! Often it is just what is needed. An ear and a person to be with.
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
paris
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« Reply #11 on: November 19, 2008, 07:19:07 PM »

Cleaning--oh how much I would love to have someone clean.  I am having 18 for Thanksgiving and all I can see are the things that need done around the house.  Just basic scrubbing, floors, woodwork.  I don't even want to ask my children.  I think they should see I need help and just do it.  They have their own lives and are very busy, but I am tired and just can't keep up with everything.   Someone clean my refrigerator.  Please.   I think it is hard when the "patient" is the woman who normally does all the housework, cleaning and cooking.   My husband doesn't see the dirt or maybe worry about it as much as I do.  But, when people stop by, I am the one who is uncomfortable if the house is a mess.  I just want to sleep and pull the blankets over my head.    I don't know if I will ever be able to ask for help.
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okarol
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« Reply #12 on: November 19, 2008, 07:22:17 PM »

Cleaning--oh how much I would love to have someone clean.  I am having 18 for Thanksgiving and all I can see are the things that need done around the house.  Just basic scrubbing, floors, woodwork.  I don't even want to ask my children.  I think they should see I need help and just do it.  They have their own lives and are very busy, but I am tired and just can't keep up with everything.   Someone clean my refrigerator.  Please.   I think it is hard when the "patient" is the woman who normally does all the housework, cleaning and cooking.   My husband doesn't see the dirt or maybe worry about it as much as I do.  But, when people stop by, I am the one who is uncomfortable if the house is a mess.  I just want to sleep and pull the blankets over my head.    I don't know if I will ever be able to ask for help.

18?? Holy cow paris! Gather up the troops and get them cleaning. Don't ask - tell them - honey - it's a lot for you to do on your own!
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
G-Ma
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« Reply #13 on: November 19, 2008, 08:03:21 PM »

Paris..I think we are sisters.....everything you said is how I feel but don't think anyone sees or hears it.  Not sure what to do.
Ann
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ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07.  Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
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Aug 5, 08, trained NxStage and Home on 9/3/2008.
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Back to RAI-Latrobe In Center. No home hemo at this time.
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« Reply #14 on: November 19, 2008, 11:30:54 PM »

Cleaning--oh how much I would love to have someone clean.  I am having 18 for Thanksgiving and all I can see are the things that need done around the house.  Just basic scrubbing, floors, woodwork.  I don't even want to ask my children.  I think they should see I need help and just do it.  They have their own lives and are very busy, but I am tired and just can't keep up with everything.   Someone clean my refrigerator.  Please.   I think it is hard when the "patient" is the woman who normally does all the housework, cleaning and cooking.   My husband doesn't see the dirt or maybe worry about it as much as I do.  But, when people stop by, I am the one who is uncomfortable if the house is a mess.  I just want to sleep and pull the blankets over my head.    I don't know if I will ever be able to ask for help.

aww Paris I feel exactly the same way. The only difference is we don't celebrate Thanksgiving and my kids don't yet have lives of their own. They are still busy running their mother mad. Before I know it the place is a mess and I am so overwhelmed I don't know where to start.   :stressed;
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cherpep
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« Reply #15 on: November 20, 2008, 05:21:15 AM »

Thank you! Thank you! Thank you!   Sometimes, I feel like I'm just lazy, when I just can't pick myself up and get those cobwebs.  I'm so proud of myself when I actually do sweep the floor (disgusted by how long it's been when I see how much I actually sweep up). But you are right, I feel embarassed when I see that dirt on top of the moldings, but just can't find the strength to get down there and wipe it all up.  I've become much more acceptable of un-vacuumed carpeting and stuff on the counters in the kitchen.  I've already given my daughter extra duties around the house, she's just a kid and needs some of her own time too.  My husband does all the laundry, and does help clean up on the weekends too.  But he works full-time too, and helps me with my dialysis - he's as tired if not more than I am.  My son is going to college full-time, and also works several hours at a job.  Honestly, he's just not home much.  When he is, it's a wonder I can even get him to pick up after himself. 

I actually asked my sister to do Thanksgiving this year - I knew I just couldn't do it, especially considering I have to work everyday that week, including the day after Thanksgiving.  There is no way I could shop and clean and prepare for that dinner. 

However, I do have Christmas.  I don't have any time off leading up to that.  It's gonna be tough. 

Twirl, I wish we did live closer - I would really enjoy spending a day with you.  I know we would have a riot. 
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monrein
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« Reply #16 on: November 20, 2008, 05:28:03 AM »

Cherpep.  You CAN ask others to make some of the side dishes for Christmas.  You mustn't wear yourself out because it takes us longer to recover.  I'd come help you too if I were closer.  I say Twirl and me both come.  I'll delegate the chores for you, Twirl can start on the mending, then we can sit and talk and laugh all day long.
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
bette1
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« Reply #17 on: November 20, 2008, 07:57:13 AM »

I can totally relate.  I have had very good friends offer to help and I don't know what to say.  The best friends just came over and brought food or had a cleaning lady come over to help and paid for it.   I have been struggling to keep my house clean.  My husband helps a lot but it doesn't seem to bother him as much as it does me. 

The exhaustion with this disease is overwhelming.  I just do what I can.
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Diagnosed with FSGS April of 1987
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« Reply #18 on: November 20, 2008, 11:12:13 AM »

Paris
you took the words from my brain and posted them
you are amazing

cherpep - we would have a blast -- and snacks, if monrein comes we will have to sneak our undialysis type snacks -- give her the carrot sticks
and we will eat the cheetos
« Last Edit: November 20, 2008, 11:25:49 AM by twirl » Logged
cherpep
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« Reply #19 on: November 20, 2008, 11:46:39 AM »

Mmmmmmm... Cheetos -- good call!
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monrein
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« Reply #20 on: November 20, 2008, 02:36:36 PM »

You guys don't have to sneak the bad stuff.  I can watch and not lecture.  I like my cocoa rice krispy squares.
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
Wattle
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« Reply #21 on: November 20, 2008, 09:48:49 PM »

Does this party have room for me???   :cheer:
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PKD
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rose1999
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« Reply #22 on: November 21, 2008, 12:39:52 AM »

  But, when people stop by, I am the one who is uncomfortable if the house is a mess.  I
You know, we are all the same, but stop and think...................if you go visit a friend do you really notice the mess? and if you do, well do you really care...have you ever visited a friend and liked them any less because their home was a mess?  No of course not (maybe sometimes you've refused a drink because things look so bad that you feel you can't possibly put anything in your mouth , I know I have   :rofl;) But at the end of the day you still love/like that person just as much.  And having said all of that, I'll still worry when the house isn't tidy and someone turns up, but we all need to learn not to sweat the small stuff ;)
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pelagia
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« Reply #23 on: November 21, 2008, 06:43:08 AM »

Dear Cherpep, the average working woman with kids can't keep up with the housework unless they chose to not sleep.  Believe me 'cause I know lots of them.  You have the very significant challenge of dialysis on top of that.  Give yourself significant slack.  I am completely objective on this one.  You have a lot on your plate.

When I can't handle something in life, I take it as a message that I need lifestyle changes and changes in expectations.  The most important thing is to spend time with your family. 

Can you cook a big pot of something once an week and morph it into a few different meals?  I'm big on soup in the winter.  I agree that if you can't get all the cleaning done, you have to let it go.

As far as folks asking how they can help, that is tougher.  I am not one to let others do much for me.  I'm not sure that you can expect anyone to come on a regular basis to clean the bathroom, but there are other ways you can get them to help.  Do you know anyone who enjoys cooking?  Maybe they would be willing to make double of something, like a big pot of soup and split it with you.  You could offer to buy the ingredients (or half the ingredients).  I can order groceries on line at our local grocery store.  It doesn't work that well for meats and vegetables, but I can get them to do the bulk of the work of pulling down canned and dry goods.  If the order is over a certain amount, they don't charge extra for doing it, so I used the service to stock up on things when Stephen was requiring a lot of care.  Maybe you can find a service like that by you and get someone to pick it up and bring it to you (even guys can do that).

You probably have your own routine, and don't really need any pointers. One suggestion I have is to buy a lambswool duster with a long handle (like 4', I guess).  Spray it with endust and you can walk around dusting moldings and cobwebs without ever bending over or stretching too much.  I agree that bathrooms are the most work. Seems my shower is always trying to develop a little mildew problem.

 :grouphug;

« Last Edit: November 21, 2008, 06:45:13 AM by pelagia » Logged

As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
twirl
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« Reply #24 on: November 21, 2008, 09:26:27 AM »

I do not care what your house looks like just as long as the food is good
my house does not stay clean for long
and just like you say - I want to spend energy times with pets and family and friends not the vacuum cleaner
your family will remember time spent with you and not the condition of the floors
(I hope, that is what I tell myself)
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