I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis => Topic started by: jshabanian on January 09, 2012, 09:37:59 AM
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I am having a hard time with feeling guilty because I am not working now. I have always worked in some way or another but since I went on dialysis I am not working.
When I started PD I thought I would go back to work but I find that there is always an excuse or reason for not being able to work. I am on the cycler now so early morning shifts won't work. I find that my health is so up and down and I never know how I am going to feel
Do most of you work while on dialysis? What type of jobs have you found that work?
We are doing fine without me working but I just feel like I am being lazy and making excuses.
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It is hard when you have a good work ethic to sit home idle. You want to feel productive and make money but at the same time you lack the confidence to do a good job and can't commit to being there everyday "on time". At least that is how I feel.
I volunteer at 2 places. Not much maybe 8 hours total per week. But, it is my way of giving back for the check I get deposited in the bank from disability and social security. ???
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I worked all 6½ yrs while on CAPD. I never called in sick due to dialysis nor PD.
I had a very physically demanding job at that time , and being physically active actually made me feel better (gave me more energy).
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Each person reacts to dialysis differently. Some maintain energy and the ability to work and others don't.
Do what you can to stay as healthy as possible.
:grouphug;
Aleta
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I have not been able to work on PD. I'm exhausted all the time. I'll work after I get a transplant. Just do the best you can.
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I work at a bank so I sit, and I have FMLA for days I can't make it.
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I have been one of the lucky ones. Able to put in 8-10 hours of work a day plus three trips to the gym per week. The only issue I have is anemia. It slows me down occassionally. Grrrrrrr. Hate taking more iron it constepates me. But I know I need to take more.
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I continue to work while on PD. That is the reason that I choose home PD in the first place. It is kinda hard on some days. But while on home PD I can do it. It helps that my boss is very understanding and considerate.
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I worked before I went on PD and continued working after PD and still working now, full time. I have this mentality that if I stop working and just lay in bed all day, I'll rot and die. Been working full time and doing PD for over 9 years now. Whew! Just typing it makes me tired.
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I worked FT when I was on in-center HD. Now that I am 6 weeks post-transplant, I am back at work PT (4 hour days) and will gradually work my way back up to 8 hour days. Right now, working 4 hour days wears me out! I like naps :)
KarenInWA
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I have been on D (in center first now at home) for a year now. I still work full time. I worked from the center with my laptop. Luckily, I have a desk job that can be done almost entirely from anywhere I have an Internet connection.
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I have worked while on PD , HEMO , Transplanted and now back on Hemo, U was off about 2 months while
getting under control again . Went back on 3 day aweek Hemo while working 12 hrs at night , I get off at 0800
and do hemo at 100. Home at 1400 in bed until 1800 and back at work at 2000 .
I do thiis schedule 4 days on 4 days off , So there are days I do not go work,
I could not waut to get back to work , Thats what I do best . Job was held
for me as I have been their 31 yrs and can get 27 weeks sick pay .
Katonsdad
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in all my years on dialysis (pd, hemo) i've always worked. When my peritoneal membrane was dead, I felt plain awful but I still showed up at work.
I purposely picked places that had good sick leaves/benefits, so that helps immensely. Where I work currently, I am allowed up to 130 working days as sick leave, and depending on how long you've been there will dictate how much pay you get. Right now, I get 55 working days at 100% pay and then 75 working days at 70%. Once that is used up, I can go on long term disability.
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I worked for the first 2 years on D. I stopped working when I got a hernia and couldnt do manuals and did the cycler at night. I was working a job where I was on call during the night and it became very difficult. I had to disconnect etc, go back to work, hook back up and be ready for my AM shift. I was too tired and couldnt complete my treatment so I went on full disability. I do have to say that those 2 years were VERY hard for me and I'd cry everyday walking out to my car at the end of my shift. I worked at a 600+ bed hospital and pushed a 300# machine around and did a lot of walking. I'd like to go back to work part time at something later in the day, but I am afraid I will lose my LTD and SSD.
Do what you can do and if you can't work full time then volunteer somewhere to keep your mind and body healthy. They don't normally care what schedule you create for yourself and you are still contributing to society which makes you feel good.
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I was on SSDI since 1077 due to back problems. Now it's retirement. I volunteer at the local hospital as a Auxiliary member. I "work" one afternoon at the gift shop and other special events during the year. I am limited because my husband has ALZ and I am his only care giver. I also am in charge of getting the bulletin put together at our church.
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You are all so busy and industrious! Truly an inspiration to all. Thank you for your answers.
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I worked FULL time with doing incenter Hemo (8 months)
was more sick than ever before but still did it, was unhappy too so when I went out with my PD cath placement surgery I stayed out of work for 7 months and loved EVERY minute of it and used that time to get my SSD too :clap;
now I am back to work and my Job (which I have been at for 7 years) is super flexible and I make my own hours and schedule (that's why I went back there)
so I am working one day (5 hours) a week plus I get my SSD which is quite a high amount b/c I worked my tail off prior dialysis.
so i don't really need to work, but its OK for now..... I am not going to lie........ I do not want to work and I used Dialysis as an excuse not to work, but I am tired all the time, CAPD takes up alot of my time and I just like to be home but if you can work and want to I say go to work!!! but if you don't, then dont do it!!! and for god sakes don't feel bad if you are not working enjoy your time off!!!!
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tbarrett..you are the most positive and encouraging person I have ever talked to! You challenge me to have a positive outlook and not feel guilty about my choices. Whew! what a relief. I think I just needed someone to say it out loud. "
Don't feel guilty if you don't want to work and don't have to."
I am using my time to help my parents and my newly widowed mother in law. I volunteer with "Fill a Stocking, Fill a Heart". We gather supplies, make Christmas Stockings, and stuff them for people who probably don't get much for Christmas. Elderly people in nursing homes, foster kids, homeless people, teenage mothers and others that the social service agencies recommend to us.
They get some necessities like soap, shampoo, deoderant, and some fun items like toys, crossword puzzle books, baby clothes, candles, etc. I find this to be very rewarding and I get to meet lots of wonderful people in the process.
Thanks again, tbarrett, for your words of encouragement.
janet
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tbarrett..you are the most positive and encouraging person I have ever talked to! You challenge me to have a positive outlook and not feel guilty about my choices. Whew! what a relief. I think I just needed someone to say it out loud. "
Don't feel guilty if you don't want to work and don't have to."
I am using my time to help my parents and my newly widowed mother in law. I volunteer with "Fill a Stocking, Fill a Heart". We gather supplies, make Christmas Stockings, and stuff them for people who probably don't get much for Christmas. Elderly people in nursing homes, foster kids, homeless people, teenage mothers and others that the social service agencies recommend to us.
They get some necessities like soap, shampoo, deoderant, and some fun items like toys, crossword puzzle books, baby clothes, candles, etc. I find this to be very rewarding and I get to meet lots of wonderful people in the process.
Thanks again, tbarrett, for your words of encouragement.
janet
you are so welcome!!!
anytime you need me, I am here!!!! ;D
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I'm currently taking a full time course load in university with 2 part time jobs. I do 9 hours of CCPD every night. I think the big part is really whether you enjoy what you are doing. My ultimate goal is to graduate this spring and I will not let kidney disease put me back. My two part time jobs don't feel like work at all... in fact it feels more like a break from all the studying. Other than being stricken with kidney disease, I must say I am pretty lucky to have found things I love doing so much.
I think taking time off is a good thing. It's a good opportunity to relax, find new things to do. I liked the idea of volunteering someone pointed out. Volunteering is definitely one of my favourite hobbies. It's so flexible, you make a difference in someone's life and you get to choose what you want to do.
To be honest though... being on dialysis has definitely made things inconvenient for me. For example, I can't stay out late if I need to be on the cycler and up early the next day. Recently I've found a solution to that.. I would shorten my treatment time and then do some manuals the day before or after in order to make up the missed dialysis. The key is to make dialysis work around YOUR schedule. It has been a week since I started this new regime and so far I've had much more freedom than being hooked to a machine 9 hours straight.
So yes please don't feel bad for not working! Do what makes you feel best. :)
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I have been on dialysis for like 3 years and I continue to work full time.
I still have urine production which may be one of reasons why.
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I have been on dialysis for like 3 years and I continue to work full time.
I still have urine production which may be one of reasons why.
I say if you wanna work and feel like it and feel well enough too then all the power to you!!! kidney failure just like any other diease or illness effets every other person differntly!!!
I was too sick..... sick more othen then not... had to literally pull myself to the car and force myslef through the day with terrible stomach and headachs throughout the entire day not even going to mention how tired I was (its a little better now that I do CAPD) this was when I was on Hemo however I still managed to work fulltime 40 plus hours while doing in-center Hemo for 8 months and I was sick as hell so where there is a will there is a way, but I dont want to work anymore and I dont and will not feel bad about it either!!!!
:yahoo;
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Aloha all, been doing PD for about 1 1/2 years now, working full time as a flight simulator manager for the Marine Corp. Yes, it's been hard to drag myself to work, but I try and if I can't make it in, my bosses understand. I do miss doing business trips from Okinawa, back to Florida but I know that long trips really wear me out. Right now I'm planning to work 6 more years if able, I'm trying to pay off my home. Oh yeah, I also wouldn't be able to do any of this if I didn't have such a wonderful wife who takes really good care of me, she is my inspiration. :cuddle;
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ever since I was diagnosed with kidney disease, I've always worked. My doctor knew that so he tried his best to keep me away from conventional hemo. I started with PD, and where I used to work had a health centre, so I made arrangements with the nurse(s) there - they let me use an examining room so I could do my exchanges. When I got laid off, my next job also had a health centre, so I did the same thing again and made arrangements with the nurse there and they let me use an examining room as well.
When PD finally didn't work out, my neph suggested nocturnal hemo, which allowed me to still keep on working FT. I had to keep working, the medical benefits from the job helped me immensely.
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I continue to work 12 hours days. (9 hours work and 3 hours commuting) Yes there are days that I don't feel like getting out of bed and I'm lucky that I have understanding bosses and co-workers. My biggest issue is running out of leave - sick, vacation, or other types. Between doctor appointments, and the days I'm home sick, it is hard to keep enough leave time on the books.
Grumpy
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I have run out of those days as well and have had to resort to LWOP, Leave With Out Pay. lost a bunch a bucks on doctor's appointments with that.
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highway61
LWOP is what I'm down to as well and that sure hurts the pocket book.
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I really think every person is different, and one needs to make an assessment of where you are at, not only physically but emotionally. For me, working is pretty much my life, and it gives me a good reason to get up in the morning and keep walking as they say, so irrespective of difficulty (and it really does get somewhat complex!) I just keep doing it. It might not be the best option at all, and certainly, i would never advise it as the best for everyone. I admire that you have made an assessment of where you are at, and are doing the constructive thing with the situation you find yourself in. The point is, there are many dimensions to making a contribution and making a difference to those around you. Working is one option, but it seems you have really found other ways of caring and helping those around you. Suggest you ditch that guilt - its a killer!!
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I work for a very small company that is always struggling along trying to make ends meet. I've had some recent discussions with my boss who I've known for a long time even before we started this company. For the last few months I've finally reached a level of stability mentally and physically after being near death a year ago and starting on PD. Since I'm closer to normal at the moment, my boss took the "opportunity" to do an overview of my 2011 performance. Basically, I was totally ineffective at times before and after starting dialysis and my multitasking abilities and logical thought processes were seriously compromised. (I'm a database programmer so those skills are critical to my job.) My boss could see the swings from good to extremely bad and how it seems now at least I've stabilized toward the "good" side.
I've never been a "quitter" and almost always came to work and put in my hours but the quality of those hours was often poor and I made a few serious mistakes that were worse than I realized at the time. Fortunately, he remained loyal and didn't fire me. If I had worked for a larger, impersonal company I'd likely have been retired and put on disability. I must add that looking back I don't think his observations are inaccurate and I didn't even perceive within myself how bad my mental capacity had been at times. For someone who has always seen a high level of success in my various careers both military and civilian, it is humbling to be the weak link.
I think the important point is that ESRD effects us in more ways than just the obvious physical effects and at least in my case I didn't even perceive how my mental capacities were diminished.
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Got a q for those who do work. What do you do for days when you get a delivery?? I just cant ever see myself working and on dialysis. The delivery, I have a daughter, and I feel like Im constantly at the doctors. atleast twice a month.
Lisa
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Got a q for those who do work. What do you do for days when you get a delivery?? I just cant ever see myself working and on dialysis. The delivery, I have a daughter, and I feel like Im constantly at the doctors. atleast twice a month.
Lisa
Fortunately, my wife is at home and takes care of the delivery.
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i am lucky tht i have a boss that understands and has never had a problem giving me the time off for docs and such, as far as the delivery, i just try to be home during the scherduled tim, if not we have a small porch area, and as long as it doenst look like its gonna rain we allow the delivery guy to leave it there if we arent home. he calls if we arnt there, and we have completely forgot on serveral occasions, my husband likes to rotate the boxes out so sually does most of the stocking, the baxter guys really like him, makes their job a lil easier... i couldnt imagine moving those heabvy ass boxes all day long.
My boss has always told me that as long as i keep her informed on whats going on with me, she will work with my needs.
she also knows the only times i have called out, or left early have included hospital visits... i have called plenty of time with peritonitis, and now that she understands wat peritonitis is and what cvauses it, she scolds me more thn my nurse does... lol
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I was told that for NxStage - as long as it was under 8 boxes, I didn't have to be home. So far, I usually get 7 boxes a month and they just leave them on the porch.
Baxter same thing- I usually get a couple of cases of saline and then a box of misc. supplies. Again, they just leave them on the porch. I drag them all inside and rotate my own stock. I am not going to waste a day off for a delivery.
Got a q for those who do work. What do you do for days when you get a delivery?? I just cant ever see myself working and on dialysis. The delivery, I have a daughter, and I feel like Im constantly at the doctors. atleast twice a month.
Lisa
Fortunately, my wife is at home and takes care of the delivery.
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I continue to work while on PD. That is the reason that I choose home PD in the first place. It is kinda hard on some days. But while on home PD I can do it. It helps that my boss is very understanding and considerate.
Word. I did work two jobs, one is full-time, the other was part time. I worked seven days a week, at least eight hours a day since last June. I just got laid off from my part time job this past week. That said, both of my bosses understand what I'm trying to do and being hooked up for ten hours a night plus the hiccups that sometimes occur delay from getting in on time. That said, I try to bust my ass every day.
Just lately, after being on PD for over a year, my energy level has dropped significantly with no obvious cause.
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Got a q for those who do work. What do you do for days when you get a delivery?? I just cant ever see myself working and on dialysis. The delivery, I have a daughter, and I feel like Im constantly at the doctors. atleast twice a month.
Lisa
My Baxter driver calls me from the stop ahead of mine and I go home to meet him. Usually only gone an hour for the delivery, so not a big deal I just eat my lunch at my desk. As for doctor's appointments and labs, I flex my time during the week to cover the hour or so I'm gone.
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HouseOfDialysis I too have suffered from low energy levels. In addition, I lost over 70% of my legs strength. Could hardly get out of a chair without someone helping or being able to use my arms to lift me up. For some reason, I felt that it was the meds that was causing the lost of strength, so in discussion with the Dr. my meds were cut WAY back and I'm now starting to get my strength and energy back. The only other issue I'm having is running out of air. It seems I get winded very easily. And I'm thinking that is due to low red blood count and not enough oxygen being delivered to the organs. I'm on a low dose of EPO for that and taking a over the counter iron tablet daily. Not sure yet, but it seems to be helping some.
Grumpy
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You are all an inspiration to me. From what I read, the constant thread is understanding bosses. I work as a teacher of foreign language in a high school. My principal is the opposite of understanding. She complains about everything I do. I came back after hip surgery, and was having trouble walking. She berated me as disorganized because I needed help getting to the copier.
I finally filed a complaint for harassment under ADA with the school ADA officer (who is also the superintendent). Silence. It was totally ignored. I had asked for a couple of "reasonable accommodations"which would have cost them zero. Nothing. Ignored.
I am so depressed I'm thinking of just taking disability and moving to my house in Mexico to die. My wife has lymphoma. We can die happy by the beach.
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The ability to work on dialysis differs from one person to another
but i think you can work without any problems
i see that you start with 4 hours work and if there is o problem you can increase time after that
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You are all an inspiration to me. From what I read, the constant thread is understanding bosses. I work as a teacher of foreign language in a high school. My principal is the opposite of understanding. She complains about everything I do. I came back after hip surgery, and was having trouble walking. She berated me as disorganized because I needed help getting to the copier.
I finally filed a complaint for harassment under ADA with the school ADA officer (who is also the superintendent). Silence. It was totally ignored. I had asked for a couple of "reasonable accommodations"which would have cost them zero. Nothing. Ignored.
I am so depressed I'm thinking of just taking disability and moving to my house in Mexico to die. My wife has lymphoma. We can die happy by the beach.
OMG Tito , looks like the Fox is running the hen house with that.
After working all my life (starting at 15 1/2 yrs old , now 49) I am now being told by Docs maybe I should not go back to work. Its a hard chaoice but with dialysis and the heart issues and no chance for transplant at thia ime , it might be a good choice. I have a 10 yr old son that I coulds spend more time with , helping him etc. Its a consideration I may need to make.
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I'm currently working full time while doing PD and it's HARD
I'm fortunate that I'm able to work at home (the company I work for is in Canada, I'm in Australia), but since being back on dialysis (around six months) I'm finding it harder and harder to get through to the end of the day. I find that by about 2pm, serious fatigue starts to set in and my concentration just isn't there
I don't really work any set hours, as long as the company achieves their goals they're happy with my performance, so I can head off to doctor's appointments without too much drama
I'm seriously thinking about dropping back to part time, (the company I work for is extremely understanding), the problem is that I'm paid reasonably well for the work I do, and the wife and kids have become accustomed to a certain lifestyle. I would feel horrible taking that away from them, as I've tried my hardest over the last 20 or so years with ESRD to have it impact them as little as possible.
I think one important thing to consider when thinking about the idea of work hours for dialysis patients is how it affects the rest of their lives, especially family and social life. Currently I stagger out of bed at 8am, sit down at my desk with a coffee and start work, work through until 5pm (most days), then sit on the couch exhausted till after my last exchange at 10pm. I don't have the energy left after a day of work and exchanges to interact with the kids in the way that I would like or they deserve, and as for a sex life.....what's that?
</end rambling>
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Stu
Could you manage a 20 - 30 minute snooze sometime during the day? I imagine you wouldn't want to impinge on your after 5 time by working, but a snooze might just refresh you enough to feel tired rather than exhausted.
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Could you manage a 20 - 30 minute snooze sometime during the day?
LOL, I'm afraid that if I lay down to sleep I wouldn't get up again!
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tito there has to be some one else above the supervisor that you can take your complaints to. The school board comes to mind. Don't give up on it - while moving to Mexico and laying on the beach sounds interesting and fun - the idea of doing that to die, just doesn't sound good.
Stu - I think all of us that work full or part time feel the same way. I work 12 hours days (9 work and 3 commuting) So when I get home the first thing is on the cycler. Then I get to eat supper - relax a bit before back on the cycler again. Sunday through Thursday are non-social days for me. And I do miss going out with friends for a bite to eat. BUT Friday and Saturday are my play evenings. Since I don't have to get up so early, I can postpone the cycler schedule a bit longer and go out with my wife and friends.
While I'm trying hard not to let D run my life, I do have to live within in the confines of the routine. Grumpy
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I am having a hard time with feeling guilty because I am not working now. I have always worked in some way or another but since I went on dialysis I am not working.
When I started PD I thought I would go back to work but I find that there is always an excuse or reason for not being able to work. I am on the cycler now so early morning shifts won't work. I find that my health is so up and down and I never know how I am going to feel
Do most of you work while on dialysis? What type of jobs have you found that work?
We are doing fine without me working but I just feel like I am being lazy and making excuses.
I chose PD so that I could continue to work. Unfortunately being on my feet 8 hours a day proved to be too much, so I "retired" in June after 8 months of being exhausted and in pain most of the time. I do miss working....company policy states I need to wait a year before I can go back to work for them...my old boss has already told me if I can come back a couple of days per week he would be glad to have me...so we'll see. Other than childbirth, this is the first time in over 40 years that I don't have a job...it does feel strange.
Ricki
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I am one of the lucky ones that worked from home doing bookkeeping for many years before my diagnosis. So, I am able to continue with my job through 2 visits/month to nephrologist and 1 visit to oncologist every month. My wonderful daughter did my bookkeeping for me while I was in the hospital for 19 days having a stem cell transplant. Even right after my catheter surgery and right after my hospital stay, my Mom would drive me to the post office for the company mail and to the bank to make deposits. I'm only 50, and I can't imagine not working at all. I wouldn't feel like I was contributing to the household income, and would feel like a spoiled housewife, sitting around eating bon bons!