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Old 28-12-17, 02:26 PM   #4
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Join Date: Sep 2012
Location: Hastings, East Sussex, UK
Posts: 1,149
Default Re: Finding it hard to care


I’m struggling to write this as I’ve just read Shiraz’s response and it’s been just the same for me - but with the obvious differences in that it’s my son who has HD [with no previous family history]. So, a different family relationship.

He was diagnosed 5 years ago, at the age of 25, with Young Onset HD. I have had similar experiences with him to those that you have observed both pre- and post-diagnosis. There were times when he was absolutely unbearable [although certain people have said that about me too!]. He wasn’t caring for himself; unsuccessfully attending work interviews; issues with personal hygiene; couldn’t manage any cash or financial situations; derogatory, disparaging, fault-finding, rubbishing and vilifying everyone in his life - family and friends included. He would either not attend NHS and Jobcentre appointments - or storm out halfway through.

He was an absolute nightmare.

The easiest or only ways to change your mind-set are probably to “think outside the box” and then walk either in his footsteps or along parallel tracks - or a mixture of all. You might have to change your life and lifestyle around for a couple of years until his initial symptoms have “mellowed”. When we now go to appointments or have discussions we usually both disagree with each other’s description of the situation - but 3 years ago we achieved our first breakthrough. We agreed to disagree. So we can both now have our own say without interrupting each other … a major improvement.

He still lives “independently” but now has daily Support Workers for his domestic chores and shift-based Carers for his other needs.

The difference is amazing: We’ve had a lovely 4 days together over Christmas - just the two of us. He wanted his “workmates” to spend Christmas with their families. He was very calm throughout and seemed to enjoy the continuity.

The thing is that your husband is going through something that is “tearing his mind apart”. The connections in his brain that have always functioned well are now mal-functioning (neurons are dying and synapses are disconnected) and he just cannot comprehend it - that’s one reason why Denial is often noticeable at the outset of this disease. “I’m ok, I’m fine” is a common early HD sentence.

I'm ok, I'm fine, I'm actually good ...

The longer you walk in his footsteps the more you will learn; the more you walk in parallel tracks the more you will learn from each other - and how you can both care and cope together. But I find that thinking outside the box is best for us: "How about trying it this way?" "What if we ...?" "Would you like ...?" "Where should I stick it!!?"

Here’s one link that I came across:

Best wishes …

New Day; New Outlook; New Challenges; New Possibilities; New Outcomes; New Successes
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