About To Get The Boot, Again, Death Sentence

I received the dreaded call from our retarded man’s nephrologist. She said if his behavioral problems when leaving the hospital continue she will transfer him out. This is a death sentence for him. As we know from the other hospital he was kicked out of before starting peroteneal, this means a mental hospital far away from everyone and everything he knows. She said she will not do the perotenal again for him. As guardians and having cared for this 34 yr. old man since he was 11, we will not stick him in a mental hospital. We have the option of Hospice, ending his life…this is sad that he must die, be euthanized, because of poor behavior which he has no clue will ultimately cause the death of him:(
Ctwohorses

I understand i used to work in a special care unit with mostlly behavior isues. Not all people take dialysis well we are all diffrent. What about doing home hemo ?? He would just need a helper maybe you?? well best of luck and hopfully he can be a goodboy and dialize .Maybe he has alot of anxioty due to dialysis?? I know i would.

[QUOTE=Ctwohorses;12756] As guardians and having cared for this 34 yr. old man since he was 11, we will not stick him in a mental hospital. We have the option of Hospice, ending his life…this is sad that he must die, be euthanized, because of poor behavior which he has no clue will ultimately cause the death of him:(
Ctwohorses[/QUOTE]

If you really cared about him then maybe you should put him somewhere where people can take care of him. Why can’t you or someone else in your family do the PD for him? It’s not that hard to learn. I do mine myself, and I’m only 19. Ending his life over something so minuscule is ridiculous. There are other ways to get him taken care of.

FYI – These caregivers have posted several messages on this site seeking support and suggestions to help them provide good care for this patient who has a long history of behavioral issues that have led him to be discharged from several dialysis clinics. They did do PD on him for some time. However, when he got infected, they were told he is a staph carrier and cannot do PD now. He’s back on HD and apparently again threatened with discharge over his behavior.

I have some questions:
– Did the doctor/clinic/lab ever figure out what kind of staph infection he had? If so, it might be possible to and whether it’s possible that he could go back on PD.
– What behaviors does he exhibit, does he have control over them or is his mental status so poor that he can’t control what he does? A neuropsychological exam might help the clinic staff better understand what he is and is not capable of so they don’t have unrealistic expectations and get angry when he doesn’t meet them.
– Has the clinic tried drugs that would let him sleep through his dialysis treatment? In my early days in dialysis, we had a patient who got very anxious, angry, and boisterous. Benadryl helped her sleep and make it through her dialysis treatment without problems.
– Is home hemodialysis is an option that you would consider? If so, have you talked with any clinics that train people to do home hemodialysis? Would they would be willing to train him and you to do home hemodialysis or do they offer staff assisted home hemodialysis? How do you think he would do on dialysis if he did it at home instead of at a clinic surrounded by people that he doesn’t really know/remember.
– Have you talked with his ESRD Network (http://www.esrdnetworks.org) to see if they can help you work out anything that would give him another chance to continue to get dialysis?
– Does he understand enough to tell you whether the burdens of dialysis are greater than the benefits? Assuming it’s under his control, by his behavior is he telling everyone that he doesn’t want to live?

Oh my goodness, I just spent 25 minutes writing a reply and it was lost when I went to submit…I cannot redo now.
Here is the link I had in the lost post.
http://www.esrdnetworks.org/networks/net2/main/traduccion_english.html

The Dr. can do what she threatens to do. My lost reply had addressed all the issues. Later I will try and rewrite.
Ctwohorses

Don’t feel bad Shay. We all remember when we were 19 and thought we had all the answers…:rolleyes:

What do you mean?? You don’t think it’s stupid to end someone’s life instead of putting them somewhere to get taken care of?? Seriously, I don’t think I know all the answers or I would post a lot more than I do. But I don’t think it’s right to end someone’s life bc they don’t want to put them in a mental hospital. It’s just stupid.

I’m sorry. I didn’t mean that to sound that abrasive.

I have lived long enough to know that there are very few issues that are black and white. This is especially true in cases like this. I don’t get the impression that these people are uncaring. I think they are doing everything that they can do. I am not in their position (and I thank God that I’m not). I don’t have all the facts about what is going on in their life. Are they taking care of other handicapped people as well? Are they financially capable of doing everything that would be required? Again, I don’t know the situation. I feel sure that they will do what they feel is right.

I am not qualified to give any advice in this situation because I don’t know all the facts. The older I get and the more I learn, the fewer things I am sure about.

But, one thing I AM sure of, is there are worse things than dying.

I know that…I’m not scared to die, but I’m scared to live in pain…

Hi,
I had forwarded on the info. about checking the staph infection. He came home yesterday with a super pubic catheater because his penis is blocked with stictures so they want to operate this week to see if they can make his penis functional and remove the SPC. Apparently the Dr. has only told me about her wanting to transfer him out. She told me no more peroteanal. I really do not think our man would thrive being ripped out of his loving home of 23 yrs.(he was abused and beaten before we got him by his father, even tossed out a window as an infant). Here he has a full life and he is devoted to caring for HIS cat. Plays with the dogs and horses. Has friends & a day program too. To be taken hundreds of miles away and “super drugged” to get hemo, none of us, including the hospital social worker or PD nurse believe he would thrive! It would be cruel and he would die anyway we are sure. He has been on dialysis of one form or another for 13.5 yrs. Our man would not understand why he was institutionalized…he would be too far to have much contact with us other than phone. The Dr. is relucant to give him much of a sedative but will give 1/2 the dose of Haldol we know works…his nuerologist will talk to her. We are hoping to get a meeting face to face with the Dr., case worker,& hospital social worker. I called ESRD and I had the NY web site. We need to find out the PA proceedures to transfer out. The case worker is going to look into that. The NY ESRED fellow said out patient clinics are not really capeable of dealing with someone who has behaviors such as his. His bad behavior has been coming upon leaving the hospital to get his medical travel ride home currently. No he cannot understand the implications of his outbursts. Gosh, his former nephrologist who had him for a long time, and now retired, used to sit in the chair with him and hold him at times. Sometimes that is exactly what he needs because although not labled autistic he has many autistic traits and I have read some of the works of “Temple…”, the autistic professor, her last name escapes me…she talks about “squeezing” as a comfort. Anyway that is about it for now…
Ctwohorses

Temple Grandin is her name.
http://www.templegrandin.com/
Ctwohorses

Hi Jason,
Home Hemo is not an option…it would require that I am with him in my sight for the whole treatment daily, he does not cooperate well for me. My husband nor I have 20 hours per week even if we could find a clinic to accept him. I called a few clinics, and believe me they are far away and no one would accept him.

My usband and I both work, hubby 2 jobs 6 mos per year. and we have another disabledperson we care for full time and a child of our own. Our man is on medicaide.
Thanks,
Ctwohorses

Hi Shay,
I applaud your courage.
We did PD for 1.5 yrs. and his catheater was pulled last month by the Dr. due to reocurring staph infections. To comitt our man to a mental hospital hundreds of miles away to be super drugged up, and drooling not able to understand why everyone and everything he has loved and been loved by abandoned him seems cruel to us. We know if we allowed him to pass on, if it comes to it, he would be in Heaven. It seems a lot less cruel than sending him to live institutionalized in a chemical labotamy.
Ctwohorses

Dear Beth,
I received a letter from the nephrologist today. She said she does not believe in sedating our man, (or anyone), to “tolerate” dialysis. However, she will give him Haldol to help him transition for the ride home.
We have a meeting with her, the hospital social worker and our man’s case worker next Tues. eve. I am not encourgaed as this is how it went when our man was being kicked out the Arnot Ogden in Elmira, except Arnot Ogden did sedate. He now has a super pubic catheater and the local urologist refuses to see our man. I am getting so drained, so tired and feel so very defeated.
Ctwohorses

I’m sure it is very frustrating and upsetting. In addition to everything else that you’re doing for this man, is no one concerned that now you and your husband are having to take care of a suprapubic catheter too? What does the urologist give for the reason why he/she won’t see the patient? Is there another urologist at a medical school or teaching hospital who would see the patient and offer a second opinion? Teaching hospitals have to keep up-to-date on conditions and treatments whereas doctors in the community may be slow to change their approach to practice.

I’m trying to remember…what behavior does he exhibit that has been so difficult for dialysis clinics and everyone else but you and your husband to deal with?

Has anyone suggested that the patient have a neuropsychological evaluation? Here’s information about neuropsych evaluation:
http://nanonline.org/downloads/paio/PAIONeuroBrochure.pdf

It’s possible that the doctor, dialysis staff, and the transportation providers think the patient is doing things out of spite and that he has control over his behavior. Or it’s possible that the way they’re addressing his behavior is making him act out more rather than less.

Years ago one of my dialysis patients had a brain injury as a result of a diabetic coma. The nephrologist I worked with asked for a neuropsychologist to evaluate her and help us understand what she was capable of doing and how we could work most effectively with her. His test results and recommendations were very helpful!

I’d suggest that you ask for a neuropsych evaluation as soon as possible if one hasn’t already been done.

[QUOTE=Unregistered;12803]Hi Shay,
I applaud your courage.
We did PD for 1.5 yrs. and his catheater was pulled last month by the Dr. due to reocurring staph infections. To comitt our man to a mental hospital hundreds of miles away to be super drugged up, and drooling not able to understand why everyone and everything he has loved and been loved by abandoned him seems cruel to us. We know if we allowed him to pass on, if it comes to it, he would be in Heaven. It seems a lot less cruel than sending him to live institutionalized in a chemical labotamy.
Ctwohorses[/QUOTE]

Thank you. That does help me to understand your position a little more. I guess you know what is right since you are there and I am here! lol Good luck with everything! :slight_smile: