Thank you for letting me whine.

[KensGirl]

Hi All,
I’ve only posted once, but I lurk a lot.  I am a wife/caregiver to my husband who has been doing HD for 22.5 years. He has developed co-morbidities over the last several years that include hyperparathyroidism (parathyroid now removed)  legal blindness due to ischemic stroke to the optic nerves in each eye, dialysis-related amyloidosis, polycystic bone disease, and the latest diagnosis of cystic renal cell carcinoma, inoperable.

We’ve been told he is dying and he has an appointment to see an in-clinic palliative care provider in about a week. Apparently, you cannot have home palliative care for cancer if you are on dialysis, because they (Medicare) don’t consider you homebound if you are transported to have your dialysis treatment.

I am a mess.  I’ve been working at holding it together, through all these years of supporting him, being the breadwinner, as he could no longer work after going into renal failure, we raised our kids through all of this, and now I’m falling apart.
We had to leave our lovely home in Alaska to be able to come to the States where there was better renal care than there was in Fairbanks 22 years ago. We grew up there, married, had our children there, and then the accident that put him into renal failure. We have been together for 33 years and I don’t know what I’m going to do without him.

I adjusted to being the spouse and helper of a dialysis patient years ago, but these newest issues are breaking my heart. He’s dying and you can look at him and know it’s true. He is in such pain from the amyloidosis and he’s lost so much weight that the dialysis crew has to keep lowering his dry weight every other week just to keep up. He runs fevers all the time in the 100 – 101 range. He cannot eat, but just a small amount, every couple of days.

I know I’m just venting, but I have nowhere else to go to vent and I have no one I can vent to because I have to be the strong one for him and the kids and grandkids.

Thank you for allowing me to be a part of your community. I appreciate you all.

KensGirl

[MooseMom]

I cannot begin to know what the two of you have been through, but just reading your post has made me tear up.

We have quite a few noble souls on this site who have been wonderful caregivers for many years, and I am hoping they will be better equipped than I could ever be to give you well deserved support.  But those of us who have renal failure do know that it takes its toll on our families.

No one here would ever accuse you of whining.  I am glad you chose to share your feels with us.  We know that sharing these sorts of thoughts with family members can result in all kinds of difficulties.  You are safe with us.

[galvo]

My thoughts are with you.

[Jean]

Oh Honey, you just come here and rant and scream and do whatever you need to do. It really is just not fair and you really do deserve a break. Get one when you can. Feel so sorry for your impending loss and the hard times. Hang tough!!!

[Bambino_Bear]

 

So sorry KensGirl. 

[cassandra]

I'm so sorry for you, and your family

             

Lots of love, and lots of strength to you all, Cas