Parent or carer? How Huntington’s disease can affect your parent-child relationship
Posted On
18 Jun 2019
Category
Body, Mind and Behaviour Young people Real life stories Juvenile Huntington's diseaseShare
In this article, we will be watching and discussing two video clips in which we hear from a mother who cares for her daughter with Juvenile Huntington’s disease. The videos give an insight into how Huntington’s disease changes a person and how the disease can affect parent-child relationships. You will find advice on being a carer along with a list of reputable sources of support towards the end of this article.
Watch
“There’s also a part where I do remember her as being Kirsty before and I don’t understand why she won’t do the things that we’ve taught her”
Learn
Caring for a child with Huntington’s disease can be both emotionally and physically demanding, particularly with juvenile onset. Many parents who look after their child don’t see themselves as a ‘carer’ because first and foremost they are a mother or father to the person with Huntington’s. As the disease progresses, however, the person with Huntington’s will need increasing amounts of support and the caring role increases. In the video, we hear from a mother who cares for her daughter with Huntington’s, she states that as the disease progresses it can be hard to come to terms with the change in personality and demeanour, this can naturally push a parent even further into the role of carer.
Caring can become difficult, tiring and stressful. This can have a big impact on relationships. In addition, because of the genetic nature of the disease, some Huntington’s carers may have cared for others in their family or may be at risk of the disease themselves.
How you feel about your caring role will vary greatly depending on your individual circumstances, but all carers are likely to find that there are times when they struggle practically and emotionally.
- Caring can be very isolating, partly because it is so demanding, but it is not an uncommon situation. Carers UK estimates that across the UK today 6.5 million people are carers, supporting a loved one who is older, disabled or seriously ill.
- As a carer, it is important to do whatever you can to look after yourself. Many carers wait until they are at breaking point to seek help, but it is much better for the person you care for, as well as for you, to seek support before you reach that point.
- Many carers have found it can help them to feel less isolated, and to get advice and support, by connecting with others in a similar situation, either in person or online. There are also various kinds of practical support that you can apply for.
Support
Specialist Huntington’s Disease Advisers (SHDAs)
We have people throughout England and Wales who run this specialist service - people who understand and know about Huntington’s and have backgrounds in either health or social care. They are there to support you and the person you are caring for.
Carer's guide
Take a look at our Carer's Guide, written with carers in mind. This comprehensive guide covers everything from information on organisations that offer support, to advice on emotional wellbeing.
Huntington’s Disease Association membership
You can join the Huntington Disease Association. Membership is free for people with Huntington’s and their friends and families. By subscribing you will receive a twice-yearly newsletter to keep you up to date with news and information about our work, events and resources.
Branches and support groups
We have branches and support groups across the country, run by volunteers who have a link to Huntington’s. They all evolve in their own way to meet the needs of the people who use them. Branches are slightly more formal than support groups, as they have a committee, but the main aim of both is to bring together people who are affected by Huntington’s. Find a branch or support group in your area here.
Message board
The Huntington’s Disease Association has an online message board where you can find support from people in similar situations. You can also share information and ideas. This is a great way of getting support if you find it difficult to get to a group or if you prefer to remain anonymous.
Events
Each year we hold several events including a family weekend. There is normally a mix of speakers and workshops. Most people who attend find the topics useful but above all they appreciate the opportunity to talk to other people in a similar situation.
Local council and social services
As a carer, you could be eligible for support from your local council. This could be money to pay for things that make caring easier, or for the cost of respite (care that would enable you to have a break).
GP
Your doctor is there to support you with your health problems (including mental health challenges such as managing stress), as well as those of the person you care for. You should tell your GP that you are a carer - this can be recorded on your medical records. Many GP practices hold a ‘carers register’ to give practical help, e.g. by offering more convenient appointment times or home visits if it is difficult to get to the surgery, or arranging for prescriptions to go direct to your local pharmacy, to make it easier to pick them up.
Your GP should be the gateway to other appropriate health and support services. They can refer you to services such as counselling, local services providing support to carers and/or social services. Try to visit your GP with problems before they get out of hand.
They should also be able to arrange for you to have a free flu jab. This is important, not only to maintain your own health but to ensure that the person you are caring for is not put at risk of infection.
Counsellors
A list of local counselling and psychotherapy services can be found on the British Association for Counselling and Psychotherapy (BACP) website. You can also ask your GP to refer you for counselling on the NHS.
Carer’s centres
Carer’s centres are available across the country and the support offered varies depending on where you live. Support could include days out, advice on benefits and form filling, complementary therapies, support groups, courses about caring, training on back care etc. Find your local carer’s agency here.
NHS social care and support guide
There is a guide to social care and support on the NHS website, which provides guidance to people who may need social care, their families and carers. It offers clear information about social care to help people understand their options and where to go if they need help.
Key reading resources
There are a number of helpful reading resources available. One notable publication is The Selfish Pig's Guide to Caring by Hugh Marriott; a first-hand account of what it means to be a carer for a loved one. Hugh's book provides the advice he wished he'd been given when he first became a carer for his wife. Take a look at all books available here.
For further information and support on being a Huntington’s disease carer please contact us on 0151 331 5444 or email info@hda.org.uk.
If you would like to fundraise for the Huntington’s Disease Association get in touch with our fundraising team at fundraising@hda.org.uk. For fundraising inspiration, take a look at our article 50@50: Interview with a fundraiser.
In this article, we will be watching and discussing two video clips in which we hear from a mother who cares for her daughter with Juvenile Huntington’s disease. The videos give an insight into how Huntington’s disease changes a person and how the disease can affect parent-child relationships. You will find advice on being a carer along with a list of reputable sources of support towards the end of this article.
Watch
“There’s also a part where I do remember her as being Kirsty before and I don’t understand why she won’t do the things that we’ve taught her”
Learn
Caring for a child with Huntington’s disease can be both emotionally and physically demanding, particularly with juvenile onset. Many parents who look after their child don’t see themselves as a ‘carer’ because first and foremost they are a mother or father to the person with Huntington’s. As the disease progresses, however, the person with Huntington’s will need increasing amounts of support and the caring role increases. In the video, we hear from a mother who cares for her daughter with Huntington’s, she states that as the disease progresses it can be hard to come to terms with the change in personality and demeanour, this can naturally push a parent even further into the role of carer.
Caring can become difficult, tiring and stressful. This can have a big impact on relationships. In addition, because of the genetic nature of the disease, some Huntington’s carers may have cared for others in their family or may be at risk of the disease themselves.
How you feel about your caring role will vary greatly depending on your individual circumstances, but all carers are likely to find that there are times when they struggle practically and emotionally.
- Caring can be very isolating, partly because it is so demanding, but it is not an uncommon situation. Carers UK estimates that across the UK today 6.5 million people are carers, supporting a loved one who is older, disabled or seriously ill.
- As a carer, it is important to do whatever you can to look after yourself. Many carers wait until they are at breaking point to seek help, but it is much better for the person you care for, as well as for you, to seek support before you reach that point.
- Many carers have found it can help them to feel less isolated, and to get advice and support, by connecting with others in a similar situation, either in person or online. There are also various kinds of practical support that you can apply for.
Support
Specialist Huntington’s Disease Advisers (SHDAs)
We have people throughout England and Wales who run this specialist service - people who understand and know about Huntington’s and have backgrounds in either health or social care. They are there to support you and the person you are caring for.
Carer's guide
Take a look at our Carer's Guide, written with carers in mind. This comprehensive guide covers everything from information on organisations that offer support, to advice on emotional wellbeing.
Huntington’s Disease Association membership
You can join the Huntington Disease Association. Membership is free for people with Huntington’s and their friends and families. By subscribing you will receive a twice-yearly newsletter to keep you up to date with news and information about our work, events and resources.
Branches and support groups
We have branches and support groups across the country, run by volunteers who have a link to Huntington’s. They all evolve in their own way to meet the needs of the people who use them. Branches are slightly more formal than support groups, as they have a committee, but the main aim of both is to bring together people who are affected by Huntington’s. Find a branch or support group in your area here.
Message board
The Huntington’s Disease Association has an online message board where you can find support from people in similar situations. You can also share information and ideas. This is a great way of getting support if you find it difficult to get to a group or if you prefer to remain anonymous.
Events
Each year we hold several events including a family weekend. There is normally a mix of speakers and workshops. Most people who attend find the topics useful but above all they appreciate the opportunity to talk to other people in a similar situation.
Local council and social services
As a carer, you could be eligible for support from your local council. This could be money to pay for things that make caring easier, or for the cost of respite (care that would enable you to have a break).
GP
Your doctor is there to support you with your health problems (including mental health challenges such as managing stress), as well as those of the person you care for. You should tell your GP that you are a carer - this can be recorded on your medical records. Many GP practices hold a ‘carers register’ to give practical help, e.g. by offering more convenient appointment times or home visits if it is difficult to get to the surgery, or arranging for prescriptions to go direct to your local pharmacy, to make it easier to pick them up.
Your GP should be the gateway to other appropriate health and support services. They can refer you to services such as counselling, local services providing support to carers and/or social services. Try to visit your GP with problems before they get out of hand.
They should also be able to arrange for you to have a free flu jab. This is important, not only to maintain your own health but to ensure that the person you are caring for is not put at risk of infection.
Counsellors
A list of local counselling and psychotherapy services can be found on the British Association for Counselling and Psychotherapy (BACP) website. You can also ask your GP to refer you for counselling on the NHS.
Carer’s centres
Carer’s centres are available across the country and the support offered varies depending on where you live. Support could include days out, advice on benefits and form filling, complementary therapies, support groups, courses about caring, training on back care etc. Find your local carer’s agency here.
NHS social care and support guide
There is a guide to social care and support on the NHS website, which provides guidance to people who may need social care, their families and carers. It offers clear information about social care to help people understand their options and where to go if they need help.
Key reading resources
There are a number of helpful reading resources available. One notable publication is The Selfish Pig's Guide to Caring by Hugh Marriott; a first-hand account of what it means to be a carer for a loved one. Hugh's book provides the advice he wished he'd been given when he first became a carer for his wife. Take a look at all books available here.
For further information and support on being a Huntington’s disease carer please contact us on 0151 331 5444 or email info@hda.org.uk.
If you would like to fundraise for the Huntington’s Disease Association get in touch with our fundraising team at fundraising@hda.org.uk. For fundraising inspiration, take a look at our article 50@50: Interview with a fundraiser.
Posted On
18 Jun 2019
Category
Category
Body, Mind and Behaviour Young people Real life stories Juvenile Huntington's diseaseShare