Exhausted Caregiver Introduction

[jojanna]

Hi.  Good to have "understanding ears" to vent to.   Why is it that my husband is on peritoneal dialysis, but it's wearing me down probably as much as he?   I am 75, and he is 86.  He's been on PD since July 2018 but had a rough time adjusting to the dialysate, passing out 11 times in the first 6 months, breaking his leg in 3 places when he fell responding to one of the many PATIENT LINE BLOCKED alarms he gets during the night ( which have been up to 15!!)), etc.   By the way, he's had about 7 cyclers since this started, surgery to reposition his PD catheter, and continues to get these alarms during the night during the drain cycles.  There's more, but (hey), this is supposed to be an introduction.  BTW, I hate dialysis!!!

[cassandra]

Welcome to the site jojanna


   


Fellow caregivers will come to your aid, I’m sure, Cas

[Charlie B53]

Welcome to IHD!

We have a number of Caretaker Members so you are not alone.

I did PD my first 3 1/2 years and often had those alarms during the night.  Most times it was simply my body position, I or my cath, didn't seem to flow well enough if I had rolled over onto my right side while sleeping.  I soon learned as soon as the alarm woke me to simply turn onto my left side and the noise would stop.  Sometimes I would have to actually get up and poke a button on the machine.

What I really did like about PD was my diet and fluid freedom, I could eat and drink to whatever and how much I desired.   Not at all like the rigors of Hemo.

Again, Glad to have you in our group.

Take Care,

Charlie B53

[Darthvadar]

Hello Jojanna...

Welcome to IHD.... I've been where you are... I cared for my late mum on my own for fifteen years... She was on PD most of the time... The additional complication was she had Parkinson's too, so couldn't do her dialysis herself, so I was doing it... Another complication was that she was a wheelchair user, as am I... So I 'get it'... The cycler never worked for Mum... It put a kilo of fluid on her on each of the nights it was tried... I meant that I was doing her manual exchanges...

I really understand the falls worry...

I hope things improve for you and your husband...

Love...


Darthvadar... Moderator...

[Cupcake]

Sounds like you have a handful. I am a big advocate for PD and did it for 2 years prior to my transplant. But it might not be for everyone. I remember the nephrology nurse telling me how she was struggling to train an older man with only one leg to do PD at home by himself--how could he wash his hands and then use a walker to get to the machine? Hop? and tangling up in the hose with the walker? and managing supplies? all the boxes and trash! seemed like a bad idea from the get-go.

I would be honest with your nephrology team and try to problem solve. Best of luck.

[Marilee]

Hi Jojoanna and welcome!

You and I have a bit in common: I'm the partner to help my hubby with his PD. I'm 62 and he's 74. The first year had its difficulties (two catheter surgeries, getting used to phosphorus limitations in the diet), but then when his residual kidney function declined, hubby started falling. He's up to 5 cycles per night plus a day-long dwell and his numbers are "adequate" which means he sleeps about 16 hours a day on and off.

Alarms drove us batty - we went through several machines - then he had another surgery to re-position the catheter (again). It drained some better, but we still got more alarms and less sleep than we wanted. And then we noticed that because of its weight the titanium connection (that bit that connects the catheter to the transfer set) actually falls over and causes the catheter tube to fold and kink (i.e. Patient Line Blocked). We solved that with a bit of stiffer plastic tubing taped to the titanium (like a collar) and the alarms went way down. Now we only get them when he literally rolls onto the tube, compressing it, or when he's constipated (often a condition he has to deal with).

To manage falls, we have installed grab bars, have a roller/walker, and he's had cataract surgery to improve his vision (another reason for falling). And now whenever he walks with just a cane, he plans the move in small bits with places to either land or sit. He's just become so weakened from all this.

It has been a busy, darn hard year.

So I can totally understand why you're wiped out, and I truly hope some of your challenges can be resolved - one by one.

[kristina]

Dear Jojanna and welcome to IHD,
It is not surprising that you are very exhausted from your husband's dialysis-treatments, because dialysis can be very challenging and I do hope you both are well looked after by your husband's doctor and the nurses.
I am thinking of you and I do hope, you get many of your questions answered here on IHD from the patient/carer point of view and I send you my kind wishes from Kristina.