What makes people have to quit working full time?

[ps7910]

Its interesting that the majority on here seem to work , this is not what my neph has told me .

Ive been on overnight PD for three and a half years and Ive worked throughout including traveling abroad to clients ,But Ive reached a point were Im seriously considering giving up. I find that work and Dialusis consume my life to a point where I do nothing else, that I could cope with but my performance at work is abysmal and I now feel incompetent and a burden to those that have to pick up the pieces.

I forget things, I take 10 times longer to do anything than I used to, I cock everything up and I cant concentrate which is not ideal in an IT job , dont get me wrong my boss has been very supportive but my self esteem is going through the floor.

For years Ive pussy footed around asking the should I work question at hospital , they have always been very supportive work is good , work keeps you going and Ive never wanted to look a wimp by asking the question should I give up, funny this and other forums seem to support this  reinforcing my view that it was just me being inadequate.

Well at my last appointment I came out with it and asked the question and the answer from my neph was 'A lot of people give up work , In fact I would say the vast majority do or go part time.

Ive not decided where I go next but time will tell , Im in the UK and getting close to the average transplant time so its a reallly difficult decision to make , guess Ill just keep my head down and stick it out for the moment.

[MomoMcSleepy]

Hey, maybe  you could go on some sort of flex or part time.  I don't know what kind of work you do, but is it possible to telecommute?  Maybe if you got more rest you might do better, but I don't know how your mental acuity is faring, I know people have a hard time later with confusion and memory problems.

A lot of people on this site don't work full time, and some who do are miserable, but close to retirement, or really need to work, and would probably scale back if they could.  I think you're being a little hard on yourself.

Everyone is different, you aren't a wimp if your body is telling you that you need rest.  I do think that you should still have somewhere to go every day, something that gives you a schedule and structure, a reason to wake up at a certain time.  People need to feel useful and part of society, and it would probably be good for you to have a job or volunteer work, but tailored to your energy level.  I am on a committee at church for Relay for Life, and taught catechism, and am I. Choir, but have been skipping choir rehearsals and advised my Relay team that I'm not going to be able to go full throttle this year, and I told catechism that since I'll start the D next year, and don't know how I'll feel, I am not come g back because I'd hate to scare the kids by dropping out suddenly, and disrupt their year,  also I simply own't have the time and don't know how I'll feel.  My job is pretty easy, though, in a way.  I worry about confusion later, but we'll see.

I wonder if there is a way to change your work schedule or responsibilities somehow, but totally understand that that is a very difficult conversation to have, and it feels like giving up.  You aren't lazy or weak--a set of major vital organs is shutting down on you, and you have to make adjustments, that's all.

Good luck to you!  I know what you mean about trying to ask medical personnel about this, I was hedging around the question when I had a bad kidney infection at Easter.  I felt so sick and wanted to stay home so much, but no one ever told me to, so I sucked it up.  It seemed a little crazy to me, though, that the organ that is failing  had a huge infection, and I went a week with no antibiotics or treatment (waiting on a culture, I went to the doc) just went to work, but, no one told me not to....

[rosebudd85]

I am due to start training on the 27th of this month but I took a medical leave from my work on the 11 th of July and had the cath placed on the 12th after alot of thought I decided to quit my fulltime job and apply for ssdi, I am so tired and sick that I was missing alot of work anyway and our work place is not the cleanest place so for my health and stress level I decided to take early retirement.  I'm only 46 years old but have worked since I was 13 years old. My job was stressful and I did alot of math and I was making alot of mistakes as my mind is not good, heck yesterday my husband tells me he is going to go blackberry picking and leaves, and all of the sudden I'm sitting here watching tv thinking were did Wally go?  LOL so I text him and he said "I told you I was going blackberry picking"  I can't wait to get my memory and my mind back and some energy.  I guess like everyone else says it's up to the person if they choose to work or not.

[Grumpy-1]

I'm in the same boat as most that are posting here.  While I'm working full time, I find that I do miss a number of days because I'm so tired that I can't get out of bed.  I worry that someone else is going to have to carry my work load while I'm out and there isn't that many other where I work to do that for very long.  But I do need to work to pay the bills.  Doing some calculations, I don't see that I can afford to retire for at least another year.   So far my mind seems to be working OK, but I do notice that I will forget things that I needed to do, so I've taken to making lists.  Grumpy

[Rain]

I got sick at 23 years, and started D, 6 months into starting my Career.   My job was something I looked forwarded too and when I got sick only if they got my hospitalized did they keep me away from work.    I've been on D for 5  years now and still work full time.   I plan on starting home hemo if I don't get a transplant in the next 1.5 years.  That's when my bf and I decided we would buy a house. 

I have to admit that i am tired and fuzzy some days, but as long as I get my lunch time walks in it clears my brain for the second half of the day.  I also try to take 3-4 weeks off every summer to travel.  Life is too short for just work and D.  But during my 4 weeks off this year, I spent 1 week at home, before heading back to work and I realized I was bored.  Sure i have hobbies, and stuff but I love my job.  It will be interesting later on this fall when I  work full time, D, and study part time for a professional certification. 
Another important thing is getting plenty of sleep.  I use to be able to be fine on 5-6 hours of sleep.  Now i could pull that off for a day or two, and then I get fuzzy.  Now i try to get 8 hours in and I'm fine.   

[KAF454]

My age (58) and length of service on my job make me eligible to retire now with a reduced annuity. I hit up my boss to let me retire and return to work in my present position but on flex time. It's a fairly common practice where I work. My plan is to fall back to 30 hours per week with no benefits. My employer would save 25% of my present salary and the full cost of my benefits... which is very appealing to them. I'd get some extra sleep through the week but would still hang around for a few more years to fully train my replacement while I hold out for Social Security. My wife carries our insurance so the loss of benefits is nothing to me and if this thing flies I wind up making about 10% more money per month. More money...more free time to take care of myself...I was feeling sort of guilty about it but I took a nap and the feeling went away!

[shutterbug05]

I wish I could have continued to work, but my job required that I be available to travel on a moments notice and on call 24/7.  Working in telecommunications can be quite taxing as well.   I proposed telecommuting but that would not deal with the travel issue.  I have considered trying to start doing something different but most of the companies I have checked out usually are not very interested in having someone on dialysis join them.  Maybe it is just the current economic situation but I sure there are other reasons as well.

[natnnnat]

We went to an information session about dialysis a couple of months ago.  This was for people who hadn't started dialysis yet, mind you, different to your position.  Anyway, the nurse advised people to keep their job as long as they could, pointing out that its really hard to get a job once you are on dialysis.  Gregory is really lucky in this respect, he is a library technician which is on his feet all day, and lifting books all day uses up the calories too (nursing books, biology books, they're very big).  With his new fistula, he couldn't be doing that, no shelving, no lifting nursing text books, and no loaning out laptops, till his fistula isn't so vulnerable.  He took three weeks off using up some of his long service leave.  Now, they offered to take him off night shifts.  That means he works 9-5:30 each day instead of having to finish at 10pm one night a week.  He accepted.  He is going 'alright' but he is starting to get tired now.  When he goes on dialysis, it'll be easier for him then too, he can't be doing a night shift one night and then dialysis the next.  They're looking after him (I hope, and not slowly moving him into redundancy!)

[AnnieB]

Some of my books are pretty heavy....Lifting restrictions when you get a fistula never even occurred to me as something I would have to deal with...<sigh>

Is that something that would prevent you from working in a library? I love libraries and have thought about looking into working in research or something like that. Is that not a practical idea? I was also really hoping that ESRD wouldn't prevent me from working in the future. 

Anne

[MomoMcSleepy]

I must admit the first year was incredibly tough, but I never considered quitting until this last year.  No one bothered to inform the patients in my clinic that the EPO requirements by the FDA had changed, so last summer I started feeling really sick and exhausted.  It took me going to my primary physician to tell me my hemoglobin and RBC count were too low.  What the hell is my nephrologist getting paid to do?

In the last year I have asked my boss to allow me to do a split shift.  I come in at 9am, do my radio show from 10am-3pm and then, on days I'm feeling run down, I do a split shift.  It does make the day quite long, but I go home for a few hours, lie down, and sometimes fall asleep for 45 minutes.  On non-treatment days, I come back and finish my shift.  On Dialysis days I do have to come back to work after treatment, but at least I'm still working full time & doing what I love.

Its a major decision to quit working, but sometimes its unavoidable.  My biggest concern is losing my company's health insurance because it covers my medications pretty well (of which there are plenty.)  With rent and a car payment, I don't think I could survive financially on disability.

I know this is old, but I just wondered if there was a quiet place for a cot at your workplace.  My Dad owned his own business, which he bought after his cancer diagnosis.  He had a room converted into a little apartment/office for himself, with a shower and bed,  in case he felt sick and had to spend the night, as well as for naps (some of his meds made it impossible to do anything but lie down and shut his eyes).
 
Unless you live super close, of course.  Just thought it might buy you some time, be less hectic.  I can understand preferring to go home, though,  it might be hard to sleep at work.

[RedMist]

Don't depend on docs and/or staff to educate you.  One of the  things they don't tell you is that cognitive decline is often part of loss of kidney function. 

If it isn't covered by the 8 lab tests they do on hemo patients they don't want to bother with it.

[Dannyboy]

I have been doing home hemo since an emergency hospitalization in 2011.  I was/am self-employed, I did/do volunteer community 'service', have managed through great difficulty to keep going with much of it, but have greatly reduced the hours I work and the "extra" thing I do.


I have seriously considered going on disability retirement, but so far have been able to keep going.   I would imagine the circumstances of each of us individually vary so much it is just so much an individual choice on who much/if a person can keep working.   I have periods where it is difficult to work more than an a hour or two, other times a full day is no problem.


It can be depressing to reflect on the "life we once had" prior to Dialysis, and perhaps a bit of "crying over spilt milk" as the saying in the US goes. 


I do home hemo with NxStage 5 times a week, and  yeah, it really makes for a tight schedule.   Like others, I get to feeling overwhelmed at times.   Like Clint Eastwood said in "Magnum Force"...."a man's GOT to know his limitations...."


---Dan

[RedMist]

I had PKD and worked for 10 years with chronic intermittent pain and infections that stopped  my kidney function intermittently.  The first kidney was 30 lbs when it was removed.  I gave up teaching and did only lab courses which didn't require planning and lecturing because my mental functioning fluctuated. When I literally fell over the second time at work I decided I was dangerous at work.  I quit working and filed for SSDI and let the Devil take the hindmost. 

Three factors seem important in the decision to go on disability.  What does it do to your income and can you adapt to that?  What's the trade-off from your health?  What will it do to your family et al?  The first two are the most important.   Don't worry about family too much.    When I finally crashed she couldn't handle the worsening of my illness anymore.  The marriage had already deteriorated greatly and she decided I was having an affair and locked me out the second day I returned home from the second nephrectomy.   

Talk to a lawyer and an accountant before applying.  Spend down if you have to, consolidate any assets to liquid assets and do what you must.  You/re the only one looking after your interests.

Red Mist

[RedMist]

Miscued with the mouse and posted too soon.

2.5 years into dialysis I have re-activated my healthcare license and will try to work part-time.  It's uncertain if I can pull that off.  Hemo for me is like living in a coma with periods of awareness.  PD is not going great either.  But I don't have anything better to do and I'm tired of being written off by people as an irrelevant has- been. 

Deep down inside, something pissed me off and  I decided to live. It wasn't a conscious decision. It's not a nice motivation but its what I got. 

Anyway, do the math.  having a secure income is good thing.  If you've been self-employed you know there are many honest ways to make the system serve you, not screw you like it does most people.

Red Mist

[lmunchkin]

You know, I read this post and thought it over n over in my mind.  I was amazed that my husband worked as long as he did. Near the end of his retirement, he struggled tremendously, especially after his amputation below one of his knee. That zapped the life out of him, but I pushed him to work almost a whole year (2/2010 to 1/2011).  He loved to work too.  It is all he has ever known since the loss of his father at the tender age of 18.  He says it taught him to be a Man and take care of his mother.

When he went back after the amputation, the company said that he would need an individual with him to help him.  Well, I spoke with my employer and told them I had to be the one.  I did not want another person looking after him.  They were very understanding and put me on an indefinate leave.  Worked with security dept of the company he worked for and his neph, and I was solely approved to be the qualified one to attend him.  Heck, lets face it, I would eventually have to get him there and home, why not?   We are always together and will remain so until death we part.

But it was extremely difficult for him to concentrate on his work, not because he didnt know how, but because of his failing health.  I would sit right next to him in his big office.  We would carry our lunch and eat at a round table they furnished for us. Even had a couch that he could lay on if he got tired.  Wonderfully fantastic group of people, who really thought alot of John.  He once was their boss. He was loyal to them all and would help so many out in their work.  They respected this man and wanted to show it too.

In Jan 2011, John & (I) decided it was time to give it up.  They gave him a retirement party.  Not only did the people he worked with show up, but employees in his past showed.  It was a sad day.  Not a dry eye in the bunch.

But I believe it was the best thing for John to do.  He has told me he misses work, but is so glad that he did not continue on with it.  I agree totally.  It will be 2yrs next month.  John deserves to rest.  And I went back to work. We are so blessed to have such good company's to work for. 

I work very close to where we live, so if John needs me, Im there in minutes.  His buddies from work will call on him from time to time to see how he is doing.  They told me, if there was anything we needed, to please just let them know!  I appreciate that, cause if we did need anything, they would see to it.  The church we go to is the same way.  Awesome people and I love them all.  When John had his surgery, they had a wheelchair ramp out front of our home.  It was up before he was released.  We were shocked and greatful.  I knew it, because of the kind & wonderful spirit in our church family. It is literally, a big family, and we all look out for one another.

Sorry if I strayed off topic, but "what makes people have to quit working full time"?  In John's case, he did not HAVE to per sa, but He knew he could not do it anymore!   He had worked 45 yrs, it was time to give it up. I appreciate that the people he worked for did not rush him out, quite the contrary, they hate to see him leave.

I can't imagine working for a "system" that wants to mess with people.  In fact, I wouldnt work for something like that.  Thank God, we still live in a country where we can choose!  Hope & pray it stays that way.

Again, sorry for the long story,
lmunchkin

[kennedy56]

My huband has worked full time since dialysis for eight years.  Having an understanding employer makes the difference.  My husband has had good and not so good employers.  There will be times when you dont feel your best and may have to miss time.  If they need you to be there for your full schedule, it can make it difficult. You have to be determined.  Take care.