Caretaker working

[Malibu]

We've just started home hemo, today was our first solo treatment.  Hubby (MM) and I are both unemployed.  We both have to work to support ourselves.  I have been looking for work and have interviewed several places.  MM is a salesman and now that he feels so much better after starting dialysis he IS planning on going back to work.  (It was iffy before dialysis)

The rub is this:  His treatment is about 2:25 a day but it takes 40min to clot, 30 min to set up, in the end it takes 4.5 to 5 hrs to complete.  He can set the machine up and be ready to stab (that is our word for cannulate.  Gotta make it fun huh?) when I walk through the door at night.  But what does that leave us?  I will arrive around 6pm, get him on by 6:30, he will finish about 10 or 11.  I have to work all day, come home and cook the dinner and do all the work at night.  I know I sound like I am whining....I guess I am.  I really am just trying to figure it out.  MM only dialyzes 5 days a week for now and he has agreed to take off 2 week days.  Say M and F.

So how do you working people do it? Thankfully we have no children, just dogs.  We are 39 and 44.

Thanks for your input.  And Happy New Year!!! 

[lola]

I probably shouldn't tell you this but I work days and my husband (pt) works night's and he is on now 4 days a week alone. I work a split shift so as long as I don't have meetings I come home for awhile, but otherwise he's alone but he text's me when he's doing his checks every 30 mins.

[petey]

Malibu --
I work full-time and help my husband with his treatments in the afternoons/evenings.  (I teach school, so I'm usually home by 4 p.m.)  Marvin doesn't work any more (which makes him sad, sad, sad).  We also are very, very active volunteers in our community -- especially in the youth baseball program.  There are days when I get up at 5 a.m., am at school by 7 a.m., teach all day, get home at 4 p.m., go to the ball field for practice/game, get home at 8 or 9 p.m., eat supper (Marvin cooks in the afternoon usually), and then get on the machine between 9 and 10 p.m., which means we come off around 1 a.m.  The next day, I'm up at 5 a.m. again, and we do it all over again.

Tired?  Yes -- I stay tired.  But, Marvin is so much healthier on home hemo and can function pretty much like a "normal" person.  The tiredness is worth it to me.  I catch up on my rest on the week-ends (sometimes -- but sometimes they're just as busy as the week days).  We've been doing this for two and a half years (the home hemo part).  I'm 47, and Marvin is 54.  No children -- one precious dog.

How do I do it?  I don't know -- but I do.  Somehow, I find the strength and the energy to do it day after day.  How long can I hold out to continue doing it?  As long as I have to!

Marvin helps out all he can.  He does almost all of the housework for me (but, he's not allowed to wash the clothes because he doesn't sort -- and I got sick of pink everything -- and pink's my favorite color, but when a whole load comes out pink because he threw a red tee-shirt in with them, it got to be too much).  Marvin also gets his machine set up for every day, so when it's time for a treatment, all I have to do is cannulate and then turn it on. 

Would I like to change it?  YES!! I'd to live days with no dialysis treatments in them, but ... for now, home hemo (even with its time involved) allows Marvin and us to be this busy.  We see that as a good thing!

[Malibu]

Thanks for the replys.  I forgot where I posted this could not find it!

I am in no danger of finding a job anytime soon which is slightly freaking me out.  I do not qualify for unemployment, nor does MM so we have a big goose egg for money coming in.  I need to stay in a good mood instead of being upset every day about it.  Enough complaining...

I guess we will just work our way into what works for us!  MM is a salesman, I think I said that.  Anyway he will be home a lot so he can get he machine set up and get dinner mostly ready for that matter...he is the cook.  I know it will work out and I too am very pleased that he does not have to do in-center.  I believe he would quit if he did!

[willowtreewren]

Malibu, here is our schedule:

Arrive at work at 7:30 AM and leave work at 5:30 PM. We live close by. Carl puts the cream on at work around 5:00 PM. I usually "stab" him around 6:20. While he is setting up the machine I cook dinner. Once he is on the machine we eat. He has a neat little tray that he uses. And yes, I cut his meat if we are having meat.

By the time he clots and everything is cleaned up and ready for the next day it is pushing 10:00 PM. We go to bed and the whole thing starts again for the next day. We take Thursdays off because we have several evenings a month that we have to attend functions for work.

This works for us. We dialyze both weekend days and that kind of sucks. But we manage.

Aleta

[Malibu]

Thanks for the info.  I think on the weekend days we will do what we are doing now which is set up early in the morning.  We are shutting off the light to the dialysis room by 9:30 - 10:30am and we have the rest of the day.  He is a early riser and as soon as he is up I just can't get back to sleep, even if it is 5am.  He gets to take off 2 days a week, Kt/v is 2.36.

[HubbysPartner]

Malibu, my husband and I both work full time.  Our schedule:  hubby up at 4:15 to be at work by 5:00, off at 2:00.  He comes home and sets up the machine.  I get up at 5:00 to be at work by 6:30, off at 3:00.  I get home around 3:45 most days and he is on the machine by 4:30 and off by 7:30 - 7:45.  Sometimes I make dinner while he is on the machine; sometimes I wait and we eat later or run out for something.  Then kitchen cleanup and we have maybe an hour or so then bedtime.  Our usual schedule is M-F and we take the weekends off, but we have started looking at taking a day off during the week so we can do some things in the evening.  I'm NOT a morning person and I am constantly tired, but I set my work schedule so we wouldn't be on late since my husband has had his work schedule for 15 years.  Saturday mornings are mine.  I sleep as long as I want and we just have a nice quiet, easy morning.  It works for us.

btw - 40 mins. sounds like a long time to clot.  How much heparin does he get?

[Malibu]

Since MM is a salesperson (and BTW he did find a place to work!!! Yay!!! Now he just needs to build back up his client base and start the money flowing again) he will be home every day.  We talked about it, he will more than likely have dinner ready most days and will have the machine set up and be ready to stab when I walk through the door.  I had an interview today, she said you don't have a problem working extra time, especially at the end of the month do you?  It is salary... But it is a very good one with excellent benefits... so noooooo, I don't mind.  That will just have to be one of the days off.  Such is life.

Since the surgeon who cleared the stenosis recently taught him how to hold both the V and the A sites at the same time he is only taking 20 min's now.  And it takes a Full 20.  He has an AV Graft.  He takes 1500 ml Heparin at the beginning of treatment.  What do you guys take?

He had a reaction to Coumadin in 1998 while treating membranous glomerulonephritis.  His platelets got down to 18, blood leaked into his eyeballs....all kinds of fun stuff.  Anyway they didn't give him any heparin for the first 2 weeks of D, then when the filter started showing little bits of clotting the heparin started. 

[Malibu]

Alrighty -- I got a job!  I am so happy!!!   

We talked again about when we will do treatments, MM said we will take off 2 times during the week, probably M and F.  That helps me out tremendously and I told him so.  Adn we will leave it flexible to change to a Sat or Sun if we want to.

YIPEE!!!!!!!!!!!!!!!