Knowing that you are going to lose someone and seeing them very unwell is extremely difficult and many challenges must be faced by those who care for someone with Huntington’s during the final stages of life.
Ideally, the person with Huntington’s and the person caring for them will have discussed some of the issues that are likely to crop up while they are still well enough to do so, so that their preferences are known and any legal matters have been dealt with and don’t cause additional stress at this time.
Some very useful information about end of life care, including kinds of care, advanced planning (sometimes called a ‘living will’) and other matters is available on the NHS website. We also publish a booklet called Care in Advanced HD. It’s meant for use by clinicians and professional carers, but contains helpful information for anyone caring for someone with Huntington’s.
At this stage, a person with Huntington’s is no longer able to work or manage their own finances, personal care and domestic responsibilities, and will have difficulty with mobility, needing to be in a chair or bed most of the time. Swallowing may be difficult and there may be significant weight loss. Communication difficulties are likely to be profound. This stage may last for years, especially if the person is fed by artificial means. Quality of life may appear to be very limited and carers and wider families may find this an emotionally draining time with some tough decisions to be made. You may need extra support from health and social care professionals.
Care at this advanced stage can be provided in a range of settings, including your own home or a hospital (some have palliative care units), hospice or care home. Many people are able to stay at home with a care package provided by social care, the NHS or a local hospice until the end of their life. Any preference, for example for your loved one to end their life in their own bed if possible, should be discussed and noted in care plans.
An option that may be available is care by a hospice in the final few weeks either as an inpatient or via a home visiting team. A referral can be made to the hospice team by the GP or doctor caring for the person. This may offer a calm and well-managed time at the end of life and provides support for the family as well as the individual.
If possible, a conversation about where care might be provided and a look at the options available before you reach this stage, is helpful. Beginning conversations about this with someone who has Huntington’s may not be easy, but is extremely worthwhile.
In the later stages of Huntington’s, the person you are caring for may start to become incontinent. As they may spend most of their time in bed, sheets and bed clothes may need daily washing and drying, as well as frequent replacing. An incontinence nurse can provide some useful help and advice - you can get a referral through your GP.
The disease can also cause difficulties with controlling body temperature which may either increase or decrease the need for heating the home. If they are frequently very hot, they may sweat profusely and feel very uncomfortable. It can help to use fans or place cool damp cloths or ice packs wrapped in a towel or cloth on the person’s forehead or neck. Clothing where possible should be light and made of natural fibres and t-shirts can be placed in a plastic bag in a freezer to cool them down before the person puts them on. Cold drinks and ice cream can be soothing for the individual when they are feeling very hot or extra water can be given via a feeding tube. Massaging levomenthol cream into the person’s arms and legs can also have a cooling effect.
If the person is very cold, as well as wrapping them up as much as possible, you may need to turn up your heating. You may be able to get cold weather and winter fuel payments to help with this. For more information see our ‘What you can claim’ factsheet.
If your utilities supplier has signed up to the Safety Net for Vulnerable Customers Scheme they are committed to never knowingly disconnecting vulnerable customers. Where a customer has been disconnected and then is identified as vulnerable, the supplier will reconnect their customer as a priority. You are considered to be vulnerable if, for reasons of age, health, disability or severe financial insecurity, you are unable to safeguard your personal welfare or the personal welfare of other members of your household. Find out more here.
A number of issues relating to quality of life and preferences for or against different types of treatment can come up during the advanced stages of Huntington’s.
One of the issues that families find difficult to broach with loved ones is what they wish to happen when swallowing becomes so difficult they are unable to eat enough to maintain their weight. It’s a good idea to discuss the issue of artificial feeding with a healthcare professional such as your speech and language therapist, dietician or Specialist Huntington’s Disease Adviser (SHDA), well in advance of a decision needing to be made. However, not wanting to plan too far ahead is often an issue for people with Huntington’s and the topic may be avoided.
If a Lasting Power of Attorney (LPOA) for Health and Welfare is made, the decision may fall to the attorney(s). If no LPOA or Advance Decision to Refuse Treatment (ADRT) is in place and the person with Huntington’s lacks the mental capacity to make the decision themselves, a best interest decision by the multidisciplinary team will be made. It is good practice to ask the family of their preferences and any preferences the patient expressed previously, but ultimately it will be the decision of the healthcare professionals.
It’s important for the person with Huntington’s and/or their family to think about whether they wish to have cardiopulmonary resuscitation (CPR) if their heart or breathing should stop. Your medical team should discuss this with you. CPR is an invasive process and can lead to injury such as broken ribs, so may not be what the individual or family wish for at this stage.
You will need more support as the disease progresses and care needs increase. If you are caring for someone at home, local hospice services and palliative care teams may be able to offer counselling to prepare you and advise on end of life care. If you already know your Specialist Huntington’s Disease Adviser, they may also be well-placed to offer practical and emotional advice to you and your family at this time.
The Huntington’s Disease Association has branches and support groups across the country which offer peer support. Many families take comfort from the experiences and support of others who have been affected.
There is also an online community, where family members may post anonymously their thoughts and feelings and discuss issues with other families affected by Huntington’s across the UK and the world.
There will be many practical matters to deal with. The official UK government website has information on what to do if someone dies, including registering a death, reporting a death to a coroner, arranging a funeral, dealing with tax and benefits, bereavement allowances and bereavement payments.
After someone has died and the funeral is over, you and your family need time to adjust. You may struggle with losing the person combined with possible guilt, possible relief that their suffering is over and then guilt about the relief. As a carer, you are not just losing the person, but also your role. Many carers have given up work to care for someone and may have lost friends and their social life along the way. You may also go from having a wide range of professionals around you to that coming to an end. People might find it difficult to know what to say to you. Your Specialist HD Adviser is still there to support you.
Also, due to the inherited nature of Huntington’s disease, the death of one individual does not necessarily mean the end of Huntington’s for a family as there may be other members with the disease or at risk of developing the disease. Families may sometimes have disagreements as to the best way to deal with Huntington’s in the family and this can lead to strained relationships.
Carers UK also provide very good information and support on caring, grief and bereavement. You can also contact:
If you need help and don’t know where to turn, contact us and we’ll try to find what you’re looking for or put you in touch with the right person.