All consuming anxiety

[AlexsMom]

Hello, I am new here and this is my first post aside from my intro post I made last month. I am new at this caregiver thing as my 3 year old son had his very first sign of kidney disease a year ago and just started PD dialysis in April.

I am having a huge issue with anxiety which has never been a problem for me. I am consumed with the fear of my child dying. I do not sleep as I am in his room every 30 minutes or so checking to make sure he is still breathing and alive. It reminds me of how it is bringing home a newborn and how for the first few nights you watch them intently, terrified of SIDS or suffocation or whatever. However, these fears of mine now have a very real basis as he does have a life threatening disease so my terror is multiplied tenfold.

He goes to his nephrologists twice a week right now as he is dependent on albumin infusions to stay well and so, twice weekly he is having full blood work done. But I am still so scared that they are going to miss something and I cannot get the vision of walking into his room and seeing him pale and stiff in his Thomas the Train bed out of my head. I know this is abnormal and I need help from a professional but between his 6 hour long albumin infusions twice a week and then his autism therapies the other 3 days a week, who has time for that?!

It does not help that my husband and I agree that he is looking very sickly. He has refused to eat since January when his kidney problems got really bad. He is on a gastro feeding tube at night but that is only supplying half of the calories he needs daily. So he is very thin and frail and his eyes look sunken in and his color is not good. He is exhausted all the time and this weekend he slept for 38 hours straight.

Anyway, I know I am rambling here and I know I need advice from a mental health professional but I had nowhere to vent. People not educated in these matters seem to think "oh kidney failure? No big deal, they have machines to fix that and he'll be fine!" Talking to friends is difficult. They all have perfectly healthy children and don't know what to say despite trying their hardest to help. I guess I just needed to vent where I might be understood. Thanks.

[SooMK]

I think your anxiety is appropriate given what you're dealing with. Kidney disease in adults is one thing and it's difficult, no doubt, but to be a parent of a three year old on dialysis plus autism is in another world. I wonder if your hospital could put you in touch with a parents' support group. Parents who are dealing with seriously ill children are in a similar place and it's possible you might be able to talk to someone via phone to fit into your schedule. These are people who would understand what you are going through the way no one else can. In any case IHD is always here and ranting and venting is always welcome. Sending you positive thoughts and hope for some light.

[UkrainianTracksuit]

I don't think I can say much to help you but your post struck a chord with me.  My mother did the very same things: checking every 30 minutes at night, not sleeping, changing the whole way of life to be of support. She was able to do this for non-stop for 2 years before the stress became so bad it materialized in neurological symptoms.  The stress from my chronically ill childhood forever changed her.. and not for the better.  She didn't have anyone to talk to and to express this.  I am telling you this because it is a good first step to come here to vent.  Please, you need to tell your son's medical team or even your own of the circumstances you are feeling so that they can get you some support.  Your son needs his parents at the best of their abilities and stress/anxiety doesn't enable that.  This post didn't say much but just wanted to let you know your anxiety is well-founded and please, when you are able to, find the appropriate help.

[obsidianom]

I certainly understand as in the beginning with my wifes illnessses I was the same way. Every time she moved in bed or made a noise I jumped and was scared.
I will tell you that it will get better. After a few months it will become the "norm" for you as you get into a routine and he doesnt die. You will slowly relax a bit.
Talk to your husband and get a counselor also to talk to. That will all help too.
Hang in there.