Living With Someone Who Has Wernicke-Korsakoff Syndrome
Living with someone who has Wernicke-Korsakoff Syndrome can be an emotional and challenging journey, both for the affected individual and their loved ones. This rare neurological condition, often caused by severe alcohol misuse, brings a unique set of difficulties. In this blog post, we'll delve into what it's like to share your life with someone facing Wernicke-Korsakoff Syndrome and explore ways to navigate this journey with empathy, understanding, and resilience.
I think the first words that come to mind are maddening and exhausting. When you live with someone who has Wernicke-Korsakoff Syndrome, you never know what is reality and what is not. It’s hard enough being a conscious human being trying to get around in life. When you add in a layer of having a loved one who has been consuming alcohol for so long that they don’t live in reality anymore, you may feel left confused and chaotic yourself.
Oftentimes, their memory is so impaired that they are repeating things over and over and over again. Sometimes they are repeating confabulated stories that morph with each telling. This can be mind boggling to loved ones because most times they are in the same physical space as the effected person, having the same experience, but later being told a completely different story about it. It can make loved ones doubt anything that the person with the syndrome talks about. This is especially hard for children who have a parent with this syndrome. Nothing about their present life or their history makes any sense or brings peace of mind.
Wernicke-Korsakoff Syndrome is caused by Thiamine (Vitamin B1) deficiency. It is an amnestic disorder associated with prolonged ingestion of alcohol.
Understanding Wernicke-Korsakoff Syndrome
Wernicke-Korsakoff Syndrome is a complex neurological disorder resulting from a deficiency in thiamine (vitamin B1), often linked to chronic alcoholism. This deficiency can lead to significant cognitive impairments, memory loss, and psychiatric symptoms. It's essential to recognize that the behaviors and challenges associated with this syndrome are primarily a result of brain damage rather than intentional actions.
What are the symptoms of Wernicke-Korsakoff Syndrome?
Memory loss for events after the onset of the syndrome aka anterograde amnesia
Memory loss extends back for some time before the onset of the syndrome aka retrograde amnesia
Loss of immediate memory, a person being unable to remember events of the past few minutes aka fixation amnesia
Invented memories which are then taken by the person as true due to gaps in memory or blackouts in memory aka confabulation
Lack of insight and often empathy
Minimal substance to their conversations except when trailing off into nonsense
Loss of interest in things quickly, and generally appear indifferent to change aka apathy
Challenges The Patient May Face
Memory Loss: Individuals with Wernicke-Korsakoff Syndrome often struggle with memory issues, which can be distressing for both them and their loved ones. They may forget recent events, conversations, or even the names of close family members.
Confabulation: Confabulation, the creation of false memories, is a common symptom. Your loved one may genuinely believe in these fabricated memories, making it challenging to have fact-based conversations.
Mood Swings: Emotional instability is prevalent, with sudden mood swings and outbursts. Understanding that these mood shifts result from brain damage can help you respond with patience and empathy.
Difficulty Communicating: Expressing thoughts and feelings can be a struggle. Encourage open, non-judgmental communication, and be prepared for moments of frustration on both sides.
Dependency: As the condition progresses, your loved one may become increasingly dependent on your support for daily tasks, such as dressing, grooming, and meal preparation.
Coping Strategies For You As The Caretaker
Education: Learn as much as you can about Wernicke-Korsakoff Syndrome. Understanding the condition's nature and progression can reduce frustration and help you respond more compassionately.
Patience and Empathy: Practice patience in your interactions. Offer emotional support, even when faced with challenging behavior, and remember that it's the illness, not the person, causing these issues.
Routine and Structure: Establishing a daily routine can provide a sense of stability for your loved one. Consistency in activities and mealtimes can help manage confusion.
Memory Aids: Use memory aids such as written notes, calendars, and labeled photographs to help your loved one recall essential information.
Social Support: Seek support from local caregiver groups or online communities. Sharing experiences with others facing similar challenges can be reassuring and offer practical advice.
Professional Help: Consult a healthcare professional who specializes in cognitive disorders. They can provide guidance on managing symptoms and improving the quality of life for both you and your loved one.
Self-Care: Caring for someone with Wernicke-Korsakoff Syndrome can be emotionally taxing. Ensure you take time for self-care, seeking respite when needed, and prioritizing your physical and mental well-being.
What does all this mean for people who live with a person with Wernicke-Korsakoff Syndrome? It generally leads to anger, exhaustion, apathy, substance use or abuse, and sometimes abandonment of the person. There is only so much a mind can handle. When you live with someone who refuses to stop drinking, refuses to take Thiamine supplements, and has no general interest in getting better or changing their life, may you have the strength to understand that they are a person and they are making choices everyday to live they way they do. They may have had an all too painful past that they are too afraid or don’t feel safe to confront. They may just not care about life as much as you do. They may have started drinking so young that they genuinely don’t know any other way of life.
Whatever the reasons for them, you get to make the choice of how much interaction you want to have with them and how much you want to be entangled in the confabulated world they live in. It’s okay to avoid them if it means you will be happier for it. If you feel like you are dealing with someone who may have Wernicke-Korsakoff Syndrome, find someone to talk to. Whether a professional, a friend, a family member, it is important to touch base with others who live in your reality and remind yourself that you are okay. You are strong, you are smart, you’re not alone, you can get through this.
Living with someone who has Wernicke-Korsakoff Syndrome is undoubtedly challenging, but it's essential to remember that your support and understanding play a vital role in their journey. By educating yourself, practicing patience, and seeking support when needed, you can provide the care and love your loved one requires while also taking care of yourself. Remember that you're not alone on this journey, and there are resources available to assist you every step of the way.
