Dolores McBride, Support Worker, Huntington’s Disease Association Northern Ireland explains the challenges of caring for someone with Huntington’s Disease.
Huntington's Disease (HD) is an inherited condition that damages certain nerve cells in the brain. This brain damage gets progressively worse over time and can affect movement, cognition (perception, awareness, thinking, judgement) and behaviour.
Early features can include personality changes, mood swings, fidgety movements, irritability and altered behaviour, although these are often overlooked and attributed to something else. Approximately 130 people are known to be symptomatic with HD in Northern Ireland with more undiagnosed and many hundreds at risk of developing the disease. People live with the disease typically for 5-20 years from the onset of symptoms until they become entirely dependent losing the ability to move, speak or swallow unaided. There is no cure yet.
The caring role can be both challenging and rewarding under any circumstances, yet with HD there appears to be a greater level of challenge attached. It has been said by people who have experienced both the role of carer and being cared for, that it can be more challenging being the carer, especially as with HD there are often multiple family members suffering simultaneously or generation after generation - the burden of watching your loved ones suffer, dealing with the feelings of helplessness, anger, guilt, despair and isolation no matter how much you do.
Sadly many family, friendships and intimate relationships breakdown down even before diagnosis, due in part to the early undiagnosed behavioural symptoms which can cause anger outbursts, unreasonable behaviour, apathy and reckless decision making. Those who are left to pick up the pieces face enormous financial, practical and emotional burdens. Depression is rife among carers as it is among those suffering from HD.
The grieving process can begin long before death ever releases their loved ones. Not only have they witnessed the physical and emotional changes, but they are witnessing a change in the personality of the person they love. The grief process begins for the 'old self', and the reality of the 'new self', with built-up frustrations and anger; deteriorating abilities, thoughts and actions; and increased needs and wants.
This all occurs over a protracted period, making it difficult to maintain an awareness of what is happening. Isolation creeps in as HD can take over lives. With processes slowed, the carer must slow down too, be patient, WAIT! In waiting, the clock on their own personal friendships, employment, family life and social activities is ticking.
Depending on the relationship between carer and cared for prior to HD diagnosis, the dynamics of the relationship will be changed forever. Sadly as the disease takes hold the person with HD maybe all but consumed and have little awareness of their situation or ability to convey their feelings of love or gratitude.
It is a role which can be thankless, one that no one would wish on themselves or others but one which many have assumed out of sheer love with passion, determination and selflessness. Carers are a very precious resource who enable people with HD to live a more independent life for longer.
We can help these HD heroes by educating ourselves about the disease, showing care and compassion and crucially ensuring that carers are supported to the best of our ability at a community and governmental level.
Courtesy of Client & Patient Council