Fear of a doctor’s appointment is affecting my brother’s health
Having a personal assistant has helped, but the care is still challenging
“Of all base passions, fear is most accursed.” — Joan La Pucelle (Joan of Arc), in Shakespeare’s “King Henry VI, Part I”
Huntington’s disease has taken the lives of my dad, grandfather, and great-grandmother. My brother, Gavin, was diagnosed with it in January 2022, at the age of 42.
Both Gavin and our dad seemed to develop an intense fear of attending medical appointments, which appeared to coincide with the cognitive onset of their disease.
While our dad had anxiety and fear over these types of appointments, with our help, support, and encouragement, he was still able to attend. With Gavin, it’s been a different story.
For years, Gavin has complained about many different ailments but has refused to seek medical help. He’s been neglecting his healthcare needs and appears not to understand the consequences of doing so.
Insurmountable resistance
Gavin will no longer speak on the telephone, so our communication, when I’m physically away from him, is through text messages. We think perhaps that it’s cognitively too difficult for him to engage in a conversation on the telephone. Perhaps he may even struggle to complete the cognitive and fine motor actions required to make or receive a call.
Some of his text messages make no sense, to the point where we have no idea how to answer. All seem driven by his anxiety and confusion.
Some ask which bins his rubbish should go in and whether he should wash it first. Some are because he’s fixating on something and wants me to remedy it for him straight away. Some are because he’s angry with me, when all I’ve tried to do is help and support. Some are to tell us he’s throwing his belongings in the bin. Some are health-related: He has a stomachache or his feet are hurting and he wants me to come straight away to provide him with foot care.
Gavin lacks any empathy, sympathy, or understanding for others. It doesn’t occur to him that we may be sleeping, working, busy, or unwell and not in a position to give him an immediate response. This delay makes him furious.
I seek help for Gavin. But after making appointments for him, he’s refused to attend. It’s heartbreaking when he’s in pain and discomfort but, in his confusion, refuses the help that’ll make him well again.
There’s a common theme with Huntington’s sufferers: They often respond to carers or people outside their immediate family in a much more positive way.
Robin, Gavin’s personal assistant, has been successful where we have failed. Gavin listens to and trusts Robin. That’s meant Robin has persuaded Gavin to attend some medical appointments.
Gavin has now been brought up to date with his vaccinations and has had general blood screening for his ongoing stomach pains. These have shown some liver inflammation and will be followed up with a CT scan. He’s been given some foot care, and his feet are feeling much more comfortable as a result.
Even with the progress Robin has made, Gavin is showing some signs of resistance. For example, he’s had two blood tests but is now saying he’ll have no more.
We believe Gavin may have lost capacity or might have fluctuating capacity around his health and welfare needs. That could bring more challenges in the months ahead, when agreement to further medical appointments and consent to treatment may be needed. A best-interest meeting may be needed to decide on the most productive way to proceed.
Even if Gavin is deemed to have lost capacity and a treatment is decided to be in his best interest, I believe treatment cannot be enforced against his wishes. All we can do is use Robin to approach Gavin, which has given us the best chance of success so far.
Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.
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