My MIL & her ESRD

[nwigirlmom]

I posted a bit in the intro section of any of you feel an overwhelming desire to read even MORE about our lives.   

But anyway, my mil was released on 12/24 (2nd admission in 2 months) and we had her first follow up today.  I knew the name of the game was going to be dialysis talk - and no matter how many times I reminded her she still brought up that she thought we were only going for her red blood cell shot.

She'll have the perma cath put in tomorrow or Friday and then start dialysis next week.  And I need to get her a consult w/ the surgeon for the fistula (who's done 3 of my surgies - though completely unrealated but he's REALLY cute! Gotta have some good news somewhere, right?) PLUS she has COPD and we need to get in with a lung doc.  But I really can't schedule those appts. until after we figure out her dialysis schedule.

I still feel like I'm intruding on your space - though some of you have made me feel very welcomed and for that I thank you - so please, if I stay anything that would remotely offend you please know that it's not out of maliciousness but out of ignorance. 

Anyhow, her doc was pretty straightforward, "yes the cath would hurt- and would probably ache like a toothache for a while."  "yes, the needles hurt but hopefully you're arms will eventually become deadened to it."  Love the doc.  Love him.

Unfortunately, we're (or I rather) am choosing a dialysis clinic located closer to me.  In the long run (and since I'll be the driver) it'll be much easier on me to pick her up and bring her the 10 miles back here to my town to have her dialized.  I can be here for my girls, their lessons, activities and just my general errands.  I say unfortunately, since the doc doesn't come with.     MIL doesn't know this ... yet.  And not looking forward to her finding out.

My main point of this post was to look for any advice or thoughts or "been through that" ... at this point she's (understandilbly VERY angry).  She wants to go into dialysis and be crappy and mean to the workers and doctors and bitch to the other patients on how dialysis sucks.  She says she has to fight or she will die. 

She lives about 8 miles away from us (we're out in the country) and I stop by during the day, do a light clean up, see if she needs anything, yada yada yada.  My husband (her son) comes over after work at 4pm and stays until 6pm.  Today, her 140lb German Sheperd had an "accident"  because she was too exhaused/weak to let him out.  So my DH spent the time scrubbing the rugs, doing laundry and stuff.  My DH told her he has to travel for business at the end of January for a week and she started crying and saying "don't leave me".

Will there be a social worker of some sort attached to the clinic (Davita) that we could speak with?  Or should I seek out privatized counseling for myself and my husband? This has been going on for 2 months now (not a long time in the big scheme of things - I completely understand) but her illness is taking a severe toll on myself, my husband and I hate to say it, our kids.  Our marriage is as strong (if not stronger) than ever but we don't feel we're adequately equipped at all to be able to deal with being primary caregivers to someone who insists she's fine (but can't even shower on her own), our own lives and our girls - we need help in this balancing act soon.  My husband is a big guy, a bluecollar guy - after visiting his mom he had a terrific bout of vertigo that didn't shake until this morning. 

Or should I just hang in there?  Doc said it should take a month or so until she starts reaping the benefits of dialysis - true, not true?  She looks like death warmed over most days, slurred speach, poor/sluggish memory, no appetite hard time breathing (no CHF - combo of COPD and her kidney's making this happen), can't really walk, has a glazed stare most of the time.  She's always ALWAYS been a negative person anyway, but her actions are off the charts now.

Maybe I"m not really searching for advice really.  Maybe I just needed to get this out.  Because I'm really at a loss of what to do. 

[kitkatz]

She should start to recover some function within a few months of starting dialysis.  She will begin to feel better after a few treatments.  It is good she is fighting. Renal disease will really get to you if you do not have a tough attitude some days.  Tell her to go scope things out at the center.  Being mean to people gets you a reputation that you will not want at the center.  She needs to see what will happen and most people who work at centers are there to help you.  Talk to the social worker as soon as you get into the center and ask your questions.

[glitter]

My husband is really quite the cranky butt-wipe to the staff at the center-he is difficult anyway-but his attitude has made it more difficult for them to really hear his problems when he has them,he says the same thing-it is his way of fighting  dialysis so he can live....and maybe that is true for him...the nurses tell me he is in denial of his condition,and that he will realize this in time. I just be quiet when I need to be and allow him his feelings..ultimately he has to go through this on his own.
   You may want to re-think changing her Dr to convenience yourself-not all neph's are the same,and having one that the patient trusts is priceless,this dialysis is very difficult enough.

[angieskidney]

I feel for you even though I am the "sick" one and not the caregiver as you and your husband are. It is true that the pain goes away, in the arm .. in the chest .. but there can be problems and complications with anything so I would suggest reading up on threads here and you can search by going to the main page and typing what ever you want to search for near the top (under your name but above the MyKidneyGear banner) or search on any section when you want the search to be just from that area. Epoman can explain more about that since this is his site.

One thing that will help her to feel better is by sticking to the dialysis diet. The diet and recipes section on these forums are EXCELLENT and you should find your way over there pretty easily. 

I have had the permcath, I have a fistula, I am currently doing buttonhole, so I can talk about somethings from my own experience but there are a lot of people here with even more experience and not just with dialysis but with DaVita. I have never been to DaVita and I have only been on Hemo for 17 months myself. I will say one thing however. It DOES get easier with the more you know and the more you learn to expect.

The people here are good and are full of info. Also there is a chatroom (see this button at the top of the page near the search bar) where you can talk one on one or live with a bunch of the people here!  

Good luck and remember we are ALL here for you to talk to!   

You may also want to check out the caregivers section

[Sluff]

nwigirlmom, this is exactly what we are here for. Rant all you want. I'm just glad your mil has someone like you to help.

Thanks Angie for helping nwigirlmom find the chat area and the caregivers threads.

[Sara]

Is it an option for your mother in law to live with your family?  Or at least relocate to your town?  It would make the logistics of getting her to dialysis and various dr's appointments easier at least. 

[nwigirlmom]

One thing that will help her to feel better is by sticking to the dialysis diet. The diet and recipes section on these forums are EXCELLENT and you should find your way over there pretty easily. 

She's had Meals on Wheels (renal diet) since right after T'giving.  Her diet is complicated by the fact that she has gout and is lactose intolerant.  So, basically she can eat .... um, bread.   

At this point she has absolutely no appetite anyway - she'll admit that the only reason she eats at all is that she needs to live.  And she doesn't eat much at all. 

[nwigirlmom]

Is it an option for your mother in law to live with your family?  Or at least relocate to your town?  It would make the logistics of getting her to dialysis and various dr's appointments easier at least. 

Yes, my home would always be open to my MIL.  (And if you knew her - even when she was healthy - you would think I was a saint! LOLLOLOL)  But she has always said she would never live with us - her mother said the same thing to her.  Basically that if the time came she'd refuse - and to put her in home somewhere.

But now that that time is here - or at the very least quickly approaching - we're at a loss.  We know that if we bring up living with us, she'll refuse.  And I know she'll refuse assisted living as well.  She *thinks* she's fine living alone.  And by bringing it up, we just may be risking her becoming so angry that we'll get thrown out.  So for now, I'll go during the day and my husband will go for a few hours after work. 

[Sara]

Just a suggestion, but if you have kids, maybe you could spin it like they really want Grandma to come live with them.  Or explain that you really need help in ______ area, that she is so good at.  Or husband wants whatever, and you need her for that to happen. 

[scyankee]

nwigirlmom,
   I feel for you and your family.  I presently go to a Davita center.  If possible, call ahead and speak to the social worker and
head nurse to let them know about your MIL.   It was the smartest move I made to be as close (2.9 miles) from my dialysis
center!!! Unfortunately, it is out of network but I refuse to travel 20 miles especially on days I don't feel well and just want
to get home.
  I hope your MIL will be feeling alot better as soon as she has a few treatments.  I have also had gout and it is wicked. The
diet is difficult but once she gets cleaned she will be able to add more food and hopefully will get her appetite back.
  My MIL fell 2 years ago and is confined to an assisted living facility in NJ.  If not for the fall we planned on having her come
south with us for several months a year. But now she needs constant care that I can not give her.  As far as moving in with
you, take that alittle slower just because she needs to adjust to a new life on dialysis first.  I UNDERSTAND HER ANGER!!!!!
I am still very angry at my situation.  I try not to be nasty to the technicians at the center but somedays are just too much
to handle.  One needs tons of patience to handle the life of dialysis and all the crapola that goes on at the center.  I don't
have that patience!!!!
  I wish you all luck in this new chapter in your lives.  Take care of yourself and your husband because the family needs you
both.
  SCYankee

[paris]

When I was at my lowest, little bites of soup was all I wanted to eat. My appetite is still poor --all part of ESRD. You are a saint--it is hard to deal with a person going through this. We all thank you for being there. Caregivers are our lifeline!