Speaking Out ~ Living With HD

Some Ways of Managing HD Behaviour

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Some Ways of Managing HD Behaviour
Chapter 4
Huntington's Disease [HD & Me] and Me, A Guide for Young People

Coping with your own feelings is one thing, coping with the daily pressures of living in a family with HD is another. Because of the disease, people with Huntington's disease often appear to be irrational, demanding or selfish

Here are some suggestions for coping with temper tantrums inflexibility, apathy, and frustration. It won't always be easy. If you lose it, forgive yourself and try again and again.

  • Stay clam
  • Try a distraction or a diversion
  • Ignore the outburst if you can't think of a positive response
  • Take time out in another room or outside
  • Try to avoid confrontation
  • Walk away

If you can't understand what they're saying:

  • Ask them to repeat what you don't understand
  • Ask them to slow down
  • Ask them to say the main word again
  • Ask them to spell the word or write it down

If you can't understand what they're saying continued:

  • Ask them to show you what they want
  • Use short sentences
  • Be prepared to wait for a few minutes for a reply
  • Ask questions so they can answer 'yes' or 'no'
  • Make 'yes' and 'no' cards
  • Don't pretend you understand when you don't
  • Make a list or write things you want them to remember
  • Remember it's the HD talking, not the person you love

Living with someone who has HD takes enormous patience and acceptance. Staying connected is important. Making the most of the good days will make it easier to manage the days when their behaviour tests you patience to the limit.

When you really don't feel you can cope, walk away. It's easier said than done, but practice will help. Come back when you feel better and try again. Or see if there's someone who can deal with the situation with you or for you. Most of all, hang on in there and look after yourself.