Imagine for a moment you’re sitting at the office. Suddenly, you feel like the entire world is spinning out of control. Your ears ring like a noonday bell, and you feel as nauseous as you might on a wild roller coaster ride. This is an example of what it’s like to live with Meniere’s Disease.
When someone in your family says they have Meniere’s Disease, your first response may be to ask, “What the heck is that?” It’s a superb question since most people have never heard of the disorder. The condition starts in the inner ear. It affects the way a person perceives balance, which is why regular episodes of vertigo are the first sign a physician looks for in a patient they suspect may have Meniere’s.
The condition has no definitive cause, no cure, and impacts a person’s life in myriad ways. The individual may go deaf in one ear. Or, they might have to stop driving for fear of having an episode in the car. Since the bouts of Meniere’s come and go, there is always a thought in the back of a person’s mind about when the next symptom will appear.
Overall, Meniere’s syndrome is an invisible disease affecting about 1 million people in the United States, with more receiving a diagnosis annually. Women have a stronger risk of developing the disorder but so do people ages 40 and up. Meniere’s can appear at any time, in any age group or gender.
A Little Background on Meniere’s
Your loved one will have attacks periodically. The episodes may last between 20 minutes and a whole day. If they are fortunate, your loved one will recognize the signs of an oncoming episode (but not always). During symptom onset, the individual may fall from a lack of balance, become sick from the dizziness, have tinnitus (unpleasant ringing in the ears), or feel as if one ear has a blockage in it. Afterward, the Meniere’s sufferer experiences disorientation, confusion, and light and sound sensitivity.
As a caregiver, you want to understand what your loved one is going through, so you can be of help. But, knowing where to begin can prove challenging. Remember, your loved one may feel ashamed of their condition, its limitations, and how it leaves them feeling out of control. So, what do you do? Where does a concerned caregiver begin?
Caregiving for Meniere’s Disease Symptoms
Unless you experience a vestibular disorder, it’s hard to understand what you’re loved one goes through. They seem fine most of the time. A person with Meniere’s may experience minor dizziness and headaches in between episodes too. The Meniere’s patient might develop depression because the condition takes away some of their independence.
Watching a loved one struggle with any chronic illness is heart-wrenching. It’s even more difficult when dealing with the effects of what seems like an invisible illness. Meniere’s symptoms are something the person experiences internally, and symptoms are often not visible to the caregiver.
It’s unfortunate with Meniere’s, there is nothing you can do to ease their symptoms. It’s important you know this from the beginning or you’ll face unnecessary guilt and frustration. Remember, you’re a caregiver, but also a human being. You can’t expect to have any perfect solutions or remedies. All you can do is approach the caregiver role from a genuine and compassionate stance.
Learning about Meniere’s
At the outset, gather information about Meniere’s Disease. Find out what to expect with symptoms. Review treatments. Sign up for an online support group where you can read about other people’s experiences. And, since the way your loved one expresses Meniere’s is unique (no two people have cut-and-dry comparable issues), track their episodes. Gather as much information as you can. When you document episodic symptoms, include:
- Date and time of symptom onset
- Food consumption (beforehand)
- General conditions in and around the attack (Was it noisy? Were there any flickering lights? Potent smells? etc).
- Sudden movements beforehand, if applicable
- Recent weather and barometric pressure changes (check the Weather Channel).
- Recent headaches (Note when)
- Allergy attacks
After a while, you will see certain patterns emerge. What you are doing is noting some Meniere’s triggers which affect your loved one. Half the battle is knowing what triggers Meniere’s. There are things you can help encourage your loved one to change (like diet and lighting) which may reduce symptoms severity or lengthen the time between episodes.
Making Space
It’s common for caregivers dealing with a person enduring a chronic situation to hover over the person they are taking care of because they worry. It’s one thing to offer socialization, general companionship, and loving support, but it’s another to become intrusive. Sometimes your loved one will need time to regroup where it’s private. When your loved one asks for solitude, it’s nothing you’ve done wrong. Don’t take it personally, but do give them the quiet space they require.
Knowing there is someone there to help is a comfort for Meniere’s sufferers. They will, over time, reach out more when they need help. You’ll need to be patient though. Sometimes pride gets in the way, and it takes a person time to adjust to the fact they need your help.
The Curse of Invisible Diseases
A common thread in with many chronic illnesses is people think there’s nothing wrong because they can’t see it. Those with conditions like anxiety disorders, Fibromyalgia, Epilepsy, Diabetes, Lupus, and Rheumatoid Arthritis (just to name a few) share this struggle with those who have Meniere’s.
With this in mind, one of the most important things you can do as a caregiver is listen. When they feel ill, stay with them, and validate their problems. Your loved one’s inner world experience is real, but with many symptoms being an internal experience, outwardly they seem fine. The outside world does not often show compassion for people with conditions they don’t understand, and this is true when it comes to invisible illnesses like Meniere’s.
Same Old Dance
Because Meniere’s sufferers have ongoing attacks, this repetitive “dance” can become wearisome for both your loved one and you. Meniere’s doesn’t care if you had plans for dinner or a movie. There is no way to plan for Meniere’s episodes, and because of the condition’s sudden onset, it makes conducting life in any normal way seem impossible.
During and after a bout of Meniere’s, many people become needy, distant, sullen, or forlorn. It’s like living with “Debbie Downer” on a personal level. Their interactions with you during those times may seem irrational. Don’t lose your composure–it will only exacerbate things further. If you keep a clear head and recognize this too shall pass, it will be better for you both.
Anxiety and Meniere’s
The physical symptoms patients experience create stress. The unpredictable nature of Meniere’s heightens anxiety. Sometimes the situation gets so bad as to require the intervention of a mental health provider. As a caregiver, you can be the person to open the discussion about getting professional help. Make sure your loved one understands you’re not judging them and you are offering support. Remember, this talk may not be the only discussion you have about the issue. It may take a few times approaching the idea of getting help before your loved one shows interest in turning to a professional. When people are in a heightened state of apprehension, they’re not always thinking clearly. When that happens, drop the topic for the moment, and try again another time when your loved one seems more settled.
Problems and Questions a Meniere’s Caregiver Faces
Meniere’s caregivers have common issues they face. Meniere’s doesn’t just affect the sufferer. It also impacts family, friends, and coworkers. The constraints of a Meniere’s patient also create challenges inside and outside the home. Below are some common questions a caregiver needs to consider and discuss with the person they are caring for; remember, these are not simple matters, and your answers won’t come overnight.
Common Caregiver Questions
1. How can the caregiver safeguard their loved ones from falls?
2. Who can drive the individual with Meniere’s to various places?
3. What happens when an episode occurs at the office?
4. When an episode occurs, what is the best way to respond?
5. How do we adjust for mild to profound hearing loss?
6. What is the best way to plan “real life” around Meniere’s disease?
What Bothers Meniere’s Sufferers the Most
Caregivers sometimes feel like they can’t get a handle on what bothers their loved one the most–what’s most difficult about their condition. Surveys reveal many people with Meniere’s disease dislike:
- The loss of hearing.
- The overall unpredictable nature of this condition.
- The limitations Meniere’s put on their life (and how it changed).
- The sense they’ve lost their true self to Meniere’s symptoms and their aftermath.
- The constant worry about the next episode.
- The financial impact on their family if they can no longer function safely while on the job.
- The awareness that there is no “easy fix” for Meniere’s and treatments may or may not help.
Meniere’s Caregivers and Self-Care
You cannot help your loved one through the trials of Meniere’s if you are not taking care of yourself. You know those things your mom always said about how to stay healthy? Well, she was right!
Seven Self-Care Tips for Meniere’s Caregivers
- Get enough rest (this may mean having one or two people to stand in for you).
- Eat right. Don’t give into the tendency just to grab fast food.
- Give yourself time out away from the situation. Again, you might need someone, like an aid, so you can do this but it’s vital. It’s important for you to feel you still have a life of your own. Just as a Meniere’s patient is not their disease, you are not just a caregiver. Time away allows you to refresh yourself and your mind. It will also make you a more patient and understanding caregiver. You can leave a plan of care on the refrigerator.
- Get mental health support. This can be a counselor or a support group, but many caregivers find this extremely helpful.
- Celebrate the good days (or span of days).
- Ask for help when you need it. This is not the time to be a proverbial “island.”
- Acknowledge your feelings good or bad. They won’t go away until you give them some attention. If the caregiving position frustrates you, by all means, confide in someone and get your feelings off your mind.
Summing It Up: The Compassionate Caregiver
Remember, for many people, Meniere’s is a lifelong, debilitating condition. You will need a lot of energy, patience, and love as a caregiver. When you honor your own needs, you have a far greater ability to be a source of fantastic support. Take good care of yourself. You can’t fill the cup of compassion if you show none to yourself. You’ll be the best caregiver you can be if you are at the top of your game when your loved one needs you the most.
