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Chronically Ill Non-Compliant 19 Year Old

Question:

I am a mother of a 19 year old daughter who has been chronically ill her whole life and now is in renal failure stage 4 and getting close to dialysis. She is very non-compliant with her health. Some examples are not going to doctor appointments, no longer taking medication, etc.

She left home when she was 18 which will be 2 years in June and we have only seen her 4 times. Last Friday I received a call from the mother of her friend where she is staying, who told me I needed to come pick her up and take her to the hospital. To make a long story short, she was very ill, had to get 2 units of blood and was in the hospital for a week when she checked herself out.

I had planned for her to come back home but she had other plans. She does not care about anything and I had pleaded with the doctors for her to have a psychiatric evaluation. I feel so guilty, but I know that my husband and son do not want her to come back home. She has basically burned her bridges with everyone in our family and everyone has tried to help her. She lived with her father, but he put her out and she lived with her grandparents and same thing happened.

She has had these problems since about the age of 13. We went to numerous counselors and psychologists and nothing ever came of these sessions.

I love my daughter so much but I cannot watch her die. I really do not know what to do and this is really hurting our entire family. I am sick from this and all I really want to do is help her but she doesn’t want any help. She has no job and no money and has quit school. She says shes too tired for school but can party and drink all night.

Do you have any advice?

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Answer:

Your anguish and heartache come right through to me as I’m sure it will to anyone who reads this. Of course you love your daughter and do not want to watch her die. In addition, she knows she is hurting the entire family…I am sure she has always believed that because of her being ill. This is very complicated and let me explain:

As yoiu know, your daugher is suffering from a chronic illness called CKD, or Chronic Kidney Disease, which she has had since early childhood. That must have placed a terribly heavy burden on her and her family. In fact, I would venture to make a wild guess, and I might be wrong, that it contributed to your divorce. Whether that is true or not, your divorce must have been extremely complicated for your daughter to deal with because of her illness.

By definition, a chronic disease is one that just does not go away.
When children have a chronic disease, it places limitations on what they can do, where they can go and, emotionally, causes them to feel depressed, scared and guilty because they know that their family is being affected by their illness. While it is normal for children to blame themselves for a divorce that must have been more so for her. In fact, I would venture to guess that she feels guilty about the impact she has had on her brother as well as the rest of you.

As with any CKD patient, she experiences such things as anxiety, depression, anger and, most importantly, denial. We deny that something exists when we feel especially threatened by something terrible. While there are times when denial might be helpful, there are other times when it is dangerous. Your daughter is in denial about her illness and that is dangerous because she is not doing the things she needs to do to help herself. She might end up refusing dialysis. I am wondering whether or not she is a transplant candidate or if she would allow herself to be?

In many ways, her anger, normal in a CKD patient, combined with her denial, is being “acted out” as though she were a normal kid. After all, we expect our kids to go through a stage of rebellion against home and family. That is not so easy when a chronic illness like this one is present.
A normal 19 year old might be drinking and partying, even though we don’t want them too. She wants to be normal. Who can blame her? Yet, she must be able to truly acknowledge her illness and to do things that promote her health. Drinking will only harm her, as you and I know and she she knows, underneath it all.

Another guess I will venture is that your daughter hates herself for what she wrongly believes she has done to you and the family. So, she works hard to have everyone push her away. That confirms her self hatred. Then, the family members let it be known that life is better without her. That is to say, they are stating how she feels about herself. In actuality, life without her might seem better but it’s a false belief. We love to tell ourselves, as family that, if only that person would leave, we would all feel better. I don’t think so.

My recommendation is that the entire family, you, your daughter, her father, grandparents, step father, brother all need an intervention. To be specific, all of you need to enter therapy with a family therapist. To be more specific, there are social workers who work with CKD patients and families, together. This is a family illness and that is what should have happened when she was a child. The focus needs to be on helping her break through her denial but, it also needs to break through the denial that everyone is better without her. She needs to know how awful all of your are feeling, how much all of you love her and, yes, admit how hard it’s been for all of you and for her.

I urge you to speak with her treating doctors or with the hospital social workers where she gets treatment because they can either refer all of you to outside family therapy or, more likely, to the resources that are available there.

There are also some helpful websites for this illness and you can contact them. One site, but not the only one is: http://www.davita.com

If you do a Google search you will find many more resources. You and she are not alone with this.

Frankly, I believe she is calling out for help. She is in dreadful emotional pain even though she is not ready to admit it.

Look for the help because she is more likely to when she knows it is for all of you and not just her.

Act fast and good luck

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