Coping with self-isolation for people with Huntington’s disease
Huntington’s disease can be challenging on a good day, therefore preparing for self-isolation and being informed on the best ways to cope during this difficult and confusing time is very important. Below, are some tips on coping with COVID-19 isolation for people with Huntington’s disease.
Routine
Many people with Huntington’s thrive on routine and this will likely be disrupted during isolation. Where possible, it is best to simulate an existing routine. For example, if it is normal to visit a café at 10 am on a Thursday, maybe go into the garden or a different room and have a dedicated coffee time? Or perhaps take that time to try out a relaxation session? We have an online relaxation webinar which gives excellent relaxation techniques and guides audiences through a relaxation session. Mimicking routine as much as possible can be healthy for everyone in the household and external carers/support. Sticking to a routine can help avoid apathy and prompt movement, socialisation and fun.
Being together
During self-isolation, people will be forced to spend a lot of time with others in their household. This can be a huge challenge for all involved. It is best to try and maintain periods of separation, this can be hard for those living in close quarters, but distance can be exercised simply by spending time in different rooms. For example, if the person affected by Huntington’s would usually go to a day centre for a few hours, instead make sure they are safe and occupied, perhaps put a movie on for them, creating distance for that time. This time can then be spent doing something else, whether that is cleaning or having a little time to relax and read a book.
Take a moment to read our Behaviour and Communication Guide explains some of the symptoms of Huntington’s and why those affected behave in certain ways. The guide explains what can be done to manage a situation before it gets out of hand. We also have a webinar entitled ‘Well-being in carers’ that could also be useful.
Hygiene
Many people affected by Huntington’s disease can find hygiene a challenge in day to day life. For some, hygiene is an on-going issue which can be a cause for concern at this time. There are several ways to cater for this. For instance, putting up posters around the home with reminders to wash hands and demonstrate how to correctly wash hands. If possible, hand sanitizer with at least 60% alcohol can be a quick alternative to hand-washing and might be easier for the person with Huntington’s. Antibacterial wipes are also an option.
Self-isolating
For people with Huntington’s self-isolation may be a particular challenge, especially if they are used to going out and being on the go constantly. If desperate to venture outside, a garden may be the solution, however, not everyone has a garden. If access to a garden is not possible or it is too small for real exercise, look into remote areas to visit separate from other members of the public.
Looking after yourself
We all need to look after our well-being and mental health at this time. We have a number of resources which are primarily aimed at carers but are also extremely useful for everyone.
There are also some great resources from other charities that could be a massive help, for example, ‘Coronavirus and your wellbeing’ from Mind and ‘Looking after your mental health during the Coronavirus outbreak’ from the Mental Health Foundation. We recommend heeding all the resources listed here, even if feeling well within yourself, as this information could be helpful in spotting mental health issues in others.
We hope that this blog has been informative, if you have any other questions or are I need of support or advice, please contact us on 0151 331 5444 or email [email protected]. We have an information and advice page dedicated to COVID-19 which can be seen here.
At this time, fundraising is more important than ever. If you had a fundraising event planned that has been cancelled, why not think about ways you can fundraise from home? Maybe you could donate your usual daily coffee or lunch money, or take part in a sponsored day without social media! If you would like to make a donation to the Huntington’s Disease Association to help aid our ongoing services during this time please visit our donation page.
Huntington’s disease can be challenging on a good day, therefore preparing for self-isolation and being informed on the best ways to cope during this difficult and confusing time is very important. Below, are some tips on coping with COVID-19 isolation for people with Huntington’s disease.
Routine
Many people with Huntington’s thrive on routine and this will likely be disrupted during isolation. Where possible, it is best to simulate an existing routine. For example, if it is normal to visit a café at 10 am on a Thursday, maybe go into the garden or a different room and have a dedicated coffee time? Or perhaps take that time to try out a relaxation session? We have an online relaxation webinar which gives excellent relaxation techniques and guides audiences through a relaxation session. Mimicking routine as much as possible can be healthy for everyone in the household and external carers/support. Sticking to a routine can help avoid apathy and prompt movement, socialisation and fun.
Being together
During self-isolation, people will be forced to spend a lot of time with others in their household. This can be a huge challenge for all involved. It is best to try and maintain periods of separation, this can be hard for those living in close quarters, but distance can be exercised simply by spending time in different rooms. For example, if the person affected by Huntington’s would usually go to a day centre for a few hours, instead make sure they are safe and occupied, perhaps put a movie on for them, creating distance for that time. This time can then be spent doing something else, whether that is cleaning or having a little time to relax and read a book.
Take a moment to read our Behaviour and Communication Guide explains some of the symptoms of Huntington’s and why those affected behave in certain ways. The guide explains what can be done to manage a situation before it gets out of hand. We also have a webinar entitled ‘Well-being in carers’ that could also be useful.
Hygiene
Many people affected by Huntington’s disease can find hygiene a challenge in day to day life. For some, hygiene is an on-going issue which can be a cause for concern at this time. There are several ways to cater for this. For instance, putting up posters around the home with reminders to wash hands and demonstrate how to correctly wash hands. If possible, hand sanitizer with at least 60% alcohol can be a quick alternative to hand-washing and might be easier for the person with Huntington’s. Antibacterial wipes are also an option.
Self-isolating
For people with Huntington’s self-isolation may be a particular challenge, especially if they are used to going out and being on the go constantly. If desperate to venture outside, a garden may be the solution, however, not everyone has a garden. If access to a garden is not possible or it is too small for real exercise, look into remote areas to visit separate from other members of the public.
Looking after yourself
We all need to look after our well-being and mental health at this time. We have a number of resources which are primarily aimed at carers but are also extremely useful for everyone.
There are also some great resources from other charities that could be a massive help, for example, ‘Coronavirus and your wellbeing’ from Mind and ‘Looking after your mental health during the Coronavirus outbreak’ from the Mental Health Foundation. We recommend heeding all the resources listed here, even if feeling well within yourself, as this information could be helpful in spotting mental health issues in others.
We hope that this blog has been informative, if you have any other questions or are I need of support or advice, please contact us on 0151 331 5444 or email [email protected]. We have an information and advice page dedicated to COVID-19 which can be seen here.
At this time, fundraising is more important than ever. If you had a fundraising event planned that has been cancelled, why not think about ways you can fundraise from home? Maybe you could donate your usual daily coffee or lunch money, or take part in a sponsored day without social media! If you would like to make a donation to the Huntington’s Disease Association to help aid our ongoing services during this time please visit our donation page.