Untreated Nurosyphilis Dementia

Ossom

We've quickly realized the importance of connecting with others who understand what we're going through. We're currently caring for our father, who has been suffering from untreated Neurosyphilis, GPI, Tabes Dorsalis, and dementia for several years now.

 

Despite our best efforts to convince him to seek treatment, he has refused, citing his "right" to do so. The state of California has been largely unhelpful in this matter, leaving us to shoulder the burden of his care as his condition deteriorates.

 

It's been a challenging and emotionally taxing journey, but we've also learned a great deal about this devastating infection and how to best support our father during this difficult time. We've read numerous books on the subject and feel somewhat like experts in navigating the unique challenges that come with caring for someone with these conditions.

 

We're excited to connect with others in our situation and share our experiences, as well as learn from those who have been through similar struggles. We look forward to finding solidarity and support within this community.

 

Take care, and we'll see you in the forums!

For more information on the subject please consider joining our group:

https://alzconnected.org/group/50-nuro-syphilis-dementia

SusanB-dil

Hi Ossom - none of dealing with 'this' is easy, even when some days may be better than others. So sorry you are dealing with it . It is hard to see our LO in such a situation.

Your dad probably has anosognosia. This is not denial, but rather the inability to see that anything is wrong at all.

Ossom

Oh yes! It is 100% anosognosia.

Thank you for sharing that insight.

Anosognosia is indeed a common symptom in cases of dementia and other neurological conditions, where individuals are unaware or in "denial" of their cognitive impairments and the need for treatment.

housefinch

Wow. There was no way to seek guardianship and mandate he receive penicillin treatment per protocol for Neurosyphilis? I’m wondering if a consultation liaison psychiatrist would have declared him competent to make medical decisions, if in his case there was any possibility that penicillin treatment could have improved his cognitive functioning a little. I’m not trying to criticize anyone, please understand—I’m just very surprised that, in this case of a potentially improvable condition, unlike most dementias, the medical and legal communities weren’t more helpful. I’m surprised that an academic Neurology or Infectious Disease MD would allow a patient with obvious deficits to make that decision. I’m sorry you went through that.

Ossom

https://alzconnected.org/discussion/comment/231796#Comment_231796

Navigating the legal and medical systems can be incredibly challenging, especially when a loved one with untreated Neurosyphilis is refusing necessary treatment.

 

In California, as in many states, patients have the legal right to refuse medical treatment, even if it may be in their best interest. This right is protected by the concept of informed consent, which requires that a patient must be capable of understanding and agreeing to a medical intervention before it can be administered.

 

In our case, despite our efforts to seek guardianship and mandate treatment for our father, the legal system ultimately supported his right to refuse care. We were left with no choice but to continue providing care for his end-of-life needs, as his condition had progressed far beyond the point where treatment would be effective.

housefinch

I’m so sorry. And please forgive me for adding to your sadness. I’m in healthcare and this situation just seems so awful. I’m very, very sorry and your father is lucky to have a caring family advocating for him. Sending you comfort and strength.

H1235

In my state if the patient is considered a harm to themselves or others they can be treated without consent. It seems obvious he is a harm to himself. The fact that he doesn’t want treatment is proof. Our medical system is a mess! How sad. If or when he is evaluated I would provide as much information about how he is a harm to himself as possible. Is he eating enough food, maybe mention the concern with the power supply and the harm he may do himself if he tries to turn it off himself. When they do finally decide to take action and treat him without his consent they will still allow him to make hipaa decisions for himself ( I don’t even understand this, it’s crazy). So if he doesn’t want doctors to talk to you they will not tell you what is happening. It sounds like you need guardianship. What a stressful situation. I hope you can find a solution soon.

Ossom

Navigating the complexities of the medical and legal systems can be incredibly frustrating, especially when a loved one is in need of care and treatment.

In our case, we've encountered challenges with the authorities, who seem more focused on protecting our father's "rights" than ensuring his well-being. We've been threatened by the police and APS, even when we provided them with evidence of his diagnosis and concerning behaviors. We have a physical folder and even a private website with all of the evidence that should suffice.

As you mentioned, guardianship is a crucial step in securing the necessary care and treatment for our father, but it requires the signatures of two physicians. Unfortunately, our father has refused to visit a doctor, making it difficult to move forward with this legal process. We are now waiting for an ambulance visit to the hospital, which would provide us with the opportunity to seek further assistance in managing his care.

When it comes to HIPAA decisions, the situation can be even more confusing. While our father may be allowed to make decisions regarding his own medical information, it's essential to understand that his cognitive impairments may prevent him from making informed choices about his treatment and care.

It's disheartening to learn that the medical and legal systems can be so unresponsive to the needs of those who are unable to advocate for themselves. However, we continue to navigate this challenging situation.

Unfortunately this means waiting for him to continue to deteriorate to the point he would have no choice. It is already too late for treatment. Past a certain point treatment for Nurosyphilis is ineffective. We were advocating for our father before it got to this point of the infection, however we were met with unexpected challenges.