The following information is provided in hopes that you will remember that
only has Huntington's Disease therefore should be treated with the same respect and courtesy that you would extend to your own loved ones.
The person with Huntington's Disease needs to feel respected and valued for what they are now, as well as for who they were in the past. It helps if those caring are:
- Flexible and tolerant.
- Can make time to listen and have a chat and enjoy being with the person.
- Can show affection as appropriate.
Thank you for caring about the dignity and respect of my loved one. It is hoped the following information will help you today:
- Huntington's Disease is hereditary and cannot be transmitted to others.
- Huntington's Disease is nothing to be ashamed of. It is no one's fault.
- Huntington's Disease may cause the person to behave in ways that other people may find irritating or upsetting but that this is not deliberate.
- A person with Huntington's Disease may often remember the distant past more clearly than the recent past and the present. They are often happy to talk about, or hear stories told about, their memories.
Treating them as an adult
Remember, although my loved one has difficulty communicating, they are still very capable of understanding what you are saying.
- It is important that everyone continues to treat them as an adult and with courtesy. Try to imagine how you would like to be spoken to if you were in their shoes.
- Never talk across them or over their heads as if they were not there.
- Be kind and reassuring without talking down to the person as though they were a child.
- Do not talk about the person with other people while the person is present.
- Always include them in the conversation.
- Avoid scolding or criticizing them - this will make them feel small. All these things will attack their fragile sense of self-worth
- Look for the meaning behind the words even if, on the surface, they do not seem to make much sense. They are, almost certainly, trying to communicate with you about how they feel.
Focus on the remaining abilities
Avoid situations in which they are bound to fail since this can be humiliating.
- Look for tasks they can still manage and activities they can still enjoy.
- Give them plenty of encouragement. Let them do things at their own pace and in their own way
- Do things with the person, rather than for them,so that they can preserve some independence.
- Break activities down into small steps so that they feel a sense of achievement, even if they can only manage part of a task.
- Our self-respect is often bound up with the way we look. Encourage them to take a pride in their appearance and give them plenty of praise.
Adapted from an Alzheimer's UK article "Understanding and respecting the person with dementia"
People with Huntingtons Disease do not handle sudden changes well so its best to discuss everything you will be doing with them, to make them aware beforehand.
It is important that he/she is informed and whenever possible consulted about matters, which concern them. Give them every opportunity to make appropriate choices.
Even if you are unsure how much they can understand, always explain what you are doing and why. You may then be able to judge their reaction from their expression and body language.
- Although too many choices can be confusing you can continue to offer choice by phrasing questions that only need a 'yes' or 'no' answer, such as 'Would you like to wear your blue jumper today?' rather than 'Which jumper would you like to wear to-day?'
Huntington's Disease affects the thinking and reasoning part of the brain and the memory. It does not mean that they no longer have feelings.
A person with Huntington's Disease may become sad or upset at times. They have the right to expect those caring for them to try to understand how they feel, and to make time to offer support rather than ignoring them or 'jollying' them along.
In the earlier stages the person may want to talk about their anxieties and the problems they are experiencing. It is important that other people do not brush these worries aside, however painful they may be, but listen and show them that they are for them.
Please make sure my loved one's right to privacy is respected.
- Suggest that people always knock on their bedroom door before entering, for example.
- When they need help with intimate personal activities such as washing or using the toilet, this should be done in a sensitive way.
- Make sure the door of the bathroom or bedroom is kept closed if other people are around.
- Do not use derogatory names for incontinence products if you are talking to an adult with Huntington's Disease. Choices such as "Depends" or "the need to change you" is preferred over "it's time to change your diaper" or "you've messed your diaper" or other likewise insensitive descriptions.
For showing respect to my loved one with Huntingotns Disease!
Please see the "Personal Emergency Information" sheet on the side of the refrigerator for information on who to contact in an emergency.
I CAN BE REACHED AT:
While I am out today, you may reach me at the following number(s). Please do not hesitate to call me for any reason.