Mental Illness and Dialysis

[demo]

My bother has a long history of mental illness (schizophrenia).  About 5 years ago he was diagnosed with CKD caused by high blood pressure.  Lately, I have been having a very hard time getting him to take his meds.  He also refuses to see his nephrologist.   Last time he went, his creatinine was 3.5 and his doctor mentioned dialysis.  I'm worried about his health and want to get him to a doctor ASAP.   I don't think he will ever agree to dialysis treatment.  I don't know what to do.

Has anyone had any experience caring for a family member with CKD and mental health problems? 

[Annig83]

Hi demo-  I am not caring for anyone, but I am a D patient, and I used to be a case manager for the mentally ill.  Is he taking his medications at all?  Or is it every once and a while?  Is he paranoid?  Any recent delusions, hearing voices, or things that aren't there?  Does he talk to you about any of his illness at all, or is he even aware of what harm he may be doing by not taking his medications? Is he under the care of a doctor...psychiatrist/psychologist.  I only assume he is high functioning? 
Remember that if he is doing okay in terms of his mental status, and if you are not his LEGAL caregiver, it is his choice in deciding if he wants the D treatment or not....
If  he is getting bad because of not taking any of his medication, you do have the option of calling the police or hospital to get him admitted somewhere... :(It's definitely a last resort, but if he is a danger to himself or others (sorry, psych talk! ) you may have to take that option to get him the help he needs. 

If you have any questions or need some resources (depending upon where you are living) let me know!  I hope I didn't offend you by asking all those questions?  Good luck and let us know if he decides to go for treatment.

[demo]

Hi Annig83.  Thanks very much.   My brother has been chronic, paranoid since he was 15.  He is 59 now and is under the care of a psychiatrist.  He takes his anti-psychotic meds and is not a threat to himself or anyone else.   In terms of functioning, he dosen't drive or work.  However, he cooks and takes care of himself.  I don't  think the voices have ever gone away.   I'm not his legal caregiver.  We never got a conservatorship since we always wanted him to be as independent as he can be.  However,  except for one brief period, he has always lived with a family member.  He's living with me now. 

The last time he quit his psych meds was in 1996.    He injured himself and end up in the ER and a psychiatric hospital.    He won't talk about his blood pressure medications or CKD.  I put the meds in a cup every morning and evening.  I assumed he was taking them until I found them in the trash.  He may have been throwing them out for months or years.  I don't know.  He hasn't had a blood or urine analysis for about a year since he refuses to see his nephrologist.   I wasn't too worried at first since he seemed ok.  We pulled his medical record from the last psych hospitalization and his creatinine was 1.8 (1996).  It was 2.2 when he started getting treated for CKD, so I thought it was stable.  His nephrologist didn't tell me that it went from 2.2 to 3.5 in a little over a year.  I learned that by requesting his recent medical records.  For the past couple of weeks, I've noticed a change.  He sleeps more and is short of breath in the morning.  He gets better as the day goes on.    However, I'm pretty worried. 

He's terrified of any medical procedure - teeth cleaning even.    I don't see how I will get him to undergo D treatment unless he is hospitalized.    I feel that I have to let his nephrolgist and psychiatrist know how he's doing.  I can't let him get any worse.  However, I hate to have to put him though all of this.  He'll probably think I'm out to get him.  If I tell him we have to schedule D treatment, he will go to bed and refuse to get up.  His nephrologist dosen't seem to understand mental illness.

We live in California.  Do you think he has the right to refuse D treatment based on the level of functioning I've described here ?  Do you think I'm legally responsible for making the decisions?

Any resouces you have would be great.  Thanks again.

[Annig83]

Hi Demo-

He seems like a very high-functioning individual, especially if he cooks for himself, can dress himself, etc... If he is taking his medications for his Schizophrenia, it appears that he has  the capability of making his own decisions, which is unfortunately not going to be easy for you to accept that he may not want to continue his kidney medications or treatment.  There are however, some options with this.

Is he open to other options like adjusting his diet?  Adjusting his fluid intake?  If he is short of breath, it sounds like he may be fluid overloaded?  Does he drink a lot during the day?  Is he monitoring his fluids?  Is he a soda drinker?  How's his salt intake?  Does he monitor his BP at all at home?

I would suggest calling his social worker, or the nurses at the nephs. office.  They may be able to give you more insight (since I don't know everything about your brother and I don't want to give you the wrong advice!!).  Also, here are some of the mental health rights from your state.  If you believe that it's "too" difficult to try and assist your brother with some of the mental health issues and getting him to go to his neph. you can attempt to call a social worker to aide in your brother's situation... http://www.dmhc.ca.gov/dmhc_consumer/br/br_mentalhlth.aspx#paritylaw
It also gives some more insight on what rights your brother ( as a Schizophrenic) has.

Just as a side note-  I've also read some articles online that stated that D, actually may help alliviate some of the Schizophrenic symptoms!  If you google: Schizophrenics, dialysis treatment, these articles pop up!  Thought it was rather interesting.  You may find it interesting as well>

Here is a website on treatment options... maybe you could have him look at it, and see what he thinks?  Maybe he's "paranoid" about the outcomes if he hasn't been educated enough?  It wouldn't hurt?  http://www.renalinfo.com/us/treatment/end_stage_kidney_failure/index.html

I will also be going to my own D center tomorrow.  If you are not opposed I will ask my Neph about your brother's situation.  Maybe he has some insight (since you are not overly thrilled about your brother's doctor). 

If I find anything else I will be sure to post.  Good luck!  Will talk soon!

[Annig83]

Demo- I spoke with my social worker today at my D center, and she confirmed that unless you have a power-of-attorney over your brother, you can't make him go to treatment for his kidneys.  It's his decision, and unfortunately, you can't change what he's going to do...but you can educate him on eating better, and making other choices that will help him with keeping his kidneys functioning well as long as he can without treatments.  I'm sorry I don't have better news for you, but if you need anymore advice, or support you are on the right site!

[demo]

You've been a big help.  I think one of the reasons my brother is so fearful is that he dosen't feel that he has any control.  The doctors talk will to me about him as if he isn't even in the room.    I think he will be more likely to see his doctor if I can assure him that he has the final say in his treatment.  Since he is functioning well and hasn't signed any agreement, it sounds like he is in charge.  I just need to verify that his psychiatrist can't overide that.