The pain of watching the decline of my brother’s cognitive health
As his Huntington's progresses, I'm having to step in — and that's challenging
My brother, Gavin, was diagnosed with Huntington’s disease in January 2022, at 42 years old. The disease has already taken the lives of our dad, grandfather, and grandmother.
In recent months, Gavin’s cognitive impairment has seemed to worsen just as his anger and aggression have increased. Most of it seems directed at our mother and me. His ability to manage his financial affairs has been diminishing for a long time, but it’s now spiraling out of control. He neglects himself more, and nothing we say to him about it seems to make much of a difference.
Gavin didn’t appoint a power of attorney for his finances before he began losing the ability to handle them himself. An application will be made to the court of protection soon, hopefully through its fast-track process here in England.
Meanwhile, a third-party mandate, supported by medical evidence, has been applied to his bank account, with my name on it. That means I have some authority to help with his banking, but not as much as a power of attorney or a deputy for financial affairs. Still, I can act for him and offer some protection in this interim period.
A disturbing visit with my brother
Mum and I went to see Gavin the other day, making sure to ask him if it was OK to pop over. Turning up unannounced is something we now avoid at all costs. It causes Gavin to lose his temper, as he doesn’t cope well with a sudden disruption to his routine.
When we arrived, Mum walked into his lounge, took off her shoes (as we always do to be polite), and stood on something wet. When we looked down at his rug, his washing-up sponge was lying in the middle of the floor. We both were confused; why was it there? Gavin saw the look on our faces, and it made him angry. He said the sponge was there to remind him to wash up. In fact, all around the flat were various items he’d strategically placed to be reminders. We quickly changed the subject to diffuse the situation.
I noticed he hadn’t been washing any clothes or linen. When I asked about that, he told me he was only washing his clothes every three to four weeks and linen every three to four months.
I tried to talk to him about his money and explain why it was important that he not overspend. He became angry, spoke over me, and didn’t listen. I let it go.
But when I got home that evening, something I said must have gotten through to Gavin. He sent me a text saying he’d checked his account and realized it had less than he’d thought. Worried, I contacted the bank. They confirmed a lot of money had left the account, mostly through internet transactions. Because of Gavin’s confusion, we have no way of knowing if it’s fraud, he’s given his card details to others, or he’s making the transactions himself. The bank had no choice but to block all his card’s internet transactions.
Gavin has sent us fits of texts ever since. He’s confused. We try to explain in the simplest way possible what’s happened and why, but that only seems to cause him further confusion. He wants the card back — now. Whether it’s at midnight or midday on a Sunday, he wants it back. He wants to buy something online right now.
It pains me to know that my actions to care for and protect him are causing him such distress. But I take comfort in knowing I’m doing my best for him.
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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David McDonagh
Positive or negative Becky we all have HD you are brilliant at caring.
Rebecca Field
Thank you so much, David. It means a lot to have positive comments and support within the HD community.
Ellen Eaton
Dear Becky-
Thank you for sharing............... I applaud you for hanging in there for your brother. He is forturnate to have you and your Mother to look out for him...... my husband would be lost without supervision now..... in most aspects of life... financial, eating, shopping, care for his person....... please keep sharing
Rebecca Field
Dear Ellen, Thank you for taking the time to read and comment. You make a good point. Our mother is 75 and continues to find the mental and physical energy to care for Gavin. My thoughts are with you and your husband.