Frustrated

[Hope1999]

Does anyone else have problems trying to family members to understand how important drinking enough water, going pee regularly like every 3 hours or so, reading fod labels/being careful of what you eat etc? My daughter, who has stage 3 ckd, a plethora of other serious medical issues along with cognitive and developmental delays, seems to do well for me as far as drinkng her water and going potty routinely but, if I have to be away from home and have to leave her with her Dad and/or her Bomba (my husband and my mother, she rarely gets her minimum daily amount of water and they forget to take her to pee. They don't seem to understand how serious it can be. I had to take my husband for labs and scans today, when I spoke to my mom at 4 pm and Hope had only had 10 oz of ginger ale and 4 oz of chicken noodle soup broth (she got sick and started throwing up during the night). The last thing I told her was not to worry about trying to get her to eat but make sure she gets her fluids even if it's ginger ale today. I spoke to her again at 6 pm and she had Hope drink 62 oz in that short span of time! I just can't seem to get them to understand......I feel so frustrated!! Any suggestions?

[Bet117 NKF Ambassador]

Oh Dear!

Outline a schedule on paper, what Hope is to be given and when. Have your mom check it off and use the excuse that when you get home you will know exactly what Hope has had and needs.

Non threatening and appreciative.

See if that improves the situation.

Having chronic issues is tough enough when you are an adult, forget a child...and to see your child go through this must be heart wrenching.

My thoughts are with you..let me know how you make out and how Hope is.

Bet

[SN23]

Prayers and strength for you and your daughter!

Hard to believe but this too shall pass and things will calm down! I was completely at sea when I first heard of my son’s CKD. But slowly by reading studies on NIH and other websites and working on the diet, exercise and staying positive and hopeful throughout and proactively checking the medicines for any side effects and engaging with the doctors to change any medicines if they were not renal protective, we are definitely at a better, calmer place🙏

I second all that Bet117 has suggested. I am glad you have your mom to help you through this. Scheduling will help her to be more effective too!

My very best,

[Betsysue2002]

A local man has started a dialysis group and i got to the second meeting last week.

He has had kd for 20 years and said that except for his son his family has basically never accepted it and the side effects.

This is a really harsh thing to say ... but i really wonder if even if your daughter were not sick that things might still be the same.

I think bet has a great idea tho. Maybe the problem actually is that no one knows what to do/when and feel helpless and confused themselves ???

Best vwishes to you. Hang in there !

[ScoobyDoo910]

I'm sorry that the suggestions I have is only from my experience and it really won't help you with other family members I tryed everything all the way to showing films and printing off stuff explaining what happens when not drinking enough. My mom was the only person you got it. Now that being said with the other grandparents I had to make up fluid when I picked my son up. I know the frustration because it got to the point I didn't leave Alex with anyone alone without me not even my husband at the time his dad. Only now 16yrs later he gets it but now Alex is old enough to know himself. I hope for your sake it happens a lot sooner. It might help by given them a watch with timers set . When it goes off this amount of fluid and bathroom break. Other things I have tryed is call at times and keep calling they get annoyed but it's reminders because hope isn't getting what she needs if you dont. If other things come to mind I will let you know. Best of luck to you both.

[kinzBravo10]

Im so sorry, this sounds very challenging... especially considering that we all hope that if anyone is going to understand and give support, it would be family. Honestly, my advice would be to educate them on how much more difficult life can become for you, your family, and most importantly, your daughter if they continue to be negligent in her care. Explain to them the emotional, physical, and psychological effects of kidney failure, dialysis, and transplant (and if you, yourself, are unsure about these things, educate yourself first. There are many helpful websites out there. Or just ask people here!). Allow your family to fully understand how much there is to gain by being diligent and proactive in her care. Sometimes, it's just a matter of people not fully understanding the scope of the problem as well as you do and just needing to be educated on it.

I wish you lots of luck and I pray that you find the change you and your daughter need.