Important lessons Terri learned as someone who found themselves looking after someone with FND.
(in no particular order)
Managing FND
CARE PARTNER
Lessons Learned
Don’t give up hope
Help comes from unexpected places, and things work out when you least expect it.
Learn to advocate
You may, unfortunately, need to fight for your loved one to get the right help, support, equipment, and diagnosis.
Accept help from those who offer it
I know, I for one am terrible at actually accepting help from others, but please know that it’s okay to need help, we are only human. Don’t feel guilty for needing some respite. It will do you both the world of good and you will come back feeling refreshed and ready to face the next challenge.
Stay calm
When a seizure hits, make the person comfortable, talk to them, tell them what’s happening, that you are there, and there’s no need to be afraid, it will pass. Keep note (a diary helps) of any changes in symptoms, anything you notice that is different to ‘normal’ for them and if something seems different worryingly don’t hesitate to call for an ambulance. We called many times and although they just sent her home again, it’s better to be safe than sorry.
Avoid Isolation
You may feel alone in your situation a lot and that your family and friends don’t understand what you are going through. It would really have helped me to have someone to talk to in the beginning stages that understands what it’s like to look after someone with this condition.
Expect the unexpected
Remember how quickly this condition can change – one minute your loved one may be talking and laughing – the next, they are struggling to string a sentence together – or the are watching TV in their chair one minute and the next they have fallen on the floor. It definitely keeps you on your toes!
Make sure you look after yourself first of all
You can’t do it all – and you definitely can’t look after someone else if you aren’t well yourself.
Encourage independence
Even if your loved one has the most debilitating mobility, try to think of ways you can make them feel in control – for example, put the TV control on their lap and place their hand on top so they can use their finger to change channels etc. Every little thing helps.
Remember to laugh
When Jess has a seizure, we always try to make each other laugh…I will ask if she’s okay, and she will tell me she’s good and might go for a jog! lol. Or I will say something like ‘nice dance’ and she will tell me to get lost. If we don’t take our minds off the situation and make a joke of it we might not get through. Our motto is: ‘if you don’t laugh you’ll cry’.
Click link below to join other care partners on the FND Hope Carers Facebook page.
Care Partners
Written by Professor Jon Stone
I was asked if I would write a few words of advice for carers of people with FND. This is the first time I’ve written something for fndhope so I’d like to add that it’s a pleasure to be involved in this more formal way with the organisation. I’ve learnt a lot from speaking to patients at various events we have had in Scotland over the last couple of years with fndhope. I have been impressed at the potential impact we can have by coming together as health professionals and patients.
I’ve been meeting patients with FND and their spouses, parents, children, friends, and carers for approximately 20 years and we had a meeting, streamed by FND Hope, with a focus on carers in Glasgow in 2014 but writing tips is still a difficult task. I’m going to use the word carer to describe all of these relationships. I am not a carer myself and the advice varies a lot depending on the relationship the carer has and the nature of the problem. Nonetheless here are some tips – all easier said than done I’m afraid.
Best wishes
Jon Stone
Professor Jon Stone’s Tips for Carers:
- If possible, try to come along to the appointments with the hospital specialist or therapist yourself. If you can understand why the diagnosis of FND has been made or find out more about what direction the therapist wishes to take treatment in that can make a big difference. I notice that sometimes I make more headway with treatment when a carer has been present and can hear the same things that the person with FND has heard. Patients with FND often have fatigue or poor memory and its particularly important in that situation to have a “second pair of ears”. You are reading this so you are already someone who has taken an interest in the condition. Read around the particular symptoms, especially advice on rehabilitation to see if there are things you could be doing to help push things in the right direction
- FND symptom such as seizures or violent movements can be frightening for carers. It’s natural to feel scared for a loved one but in that moment what they really need is someone to be calm, who has the confidence to know that however bad it looks, things will settle back to how they have been. Being whisked away in an ambulance only to be poked and prodded in the emergency room before being sent home again is a much worse option than being able to stay in your own home with someone who knows what is wrong and what to do about it. When carers ask me ‘what should I do when they have an attack’ I suggest that they think about what they would do if the person were having a panic attack. Panic attacks are different problem but the response should be similar – stay calm, try to talk about things with happy and calm associations.
- Living with a loved one who has FND can be tough. Symptoms fluctuate a lot and it’s often hard to make plans. Physical disability, fatigue, poor memory, irritability, light sensitivity are just some of the symptoms that get in the way of being able to go out and do the things you used to do. There may be an unexpected relapse just when you both thought you were getting somewhere. Severe FND can change marital relationships in to a more patient-carer relationship that takes its toll in both directions. It’s important though, however bad things are that a carer for someone with FND is able to make time for themselves in the week. If you can’t go out together plan a movie or drink with friends. Discuss this openly with your loved one – they should be able to see this is important and stop you from feeling guilty about taking time out.
- Address relationship problems if they are present / Cherish your relationship if there are none. Some patients with FND have fantastic support from loved ones. I notice that illness can bring some couples closer together in a positive way. But in others the illness undoubtedly takes its toll on the relationship. In some cases a difficult relationship creates a barrier to rehabilitation. In that situation look around for things that might help – talk to each other first and foremost. But if that isn’t working talking to friends or even professional organisations may help sort out disputes or solve problems at home.
- People with FND typically have symptoms that vary in severity with good days and bad days. Part of rehabilitation is about ‘doing more on the bad days’ and ‘less on the good days’. Carers can help with both of those things, encouraging on the worst days to do a little more exercise and reminding them on a good day that they need to slow down because they are likely to relapse.
Professor Jon Stone is a leading FND researcher and Consultant Neurologist in Edinburgh, Scotland. He has his own website for Functional Neurological Disorder: neurosymptoms.org
Carer’s Perspective
Most of you, like me, are likely to have been living your life, rushing about your daily routines of work, home, play etc one day, and the next, thrust into a whole new world and a new job title aka: CARER.
“Woah.. what? me? Well, how do I cope? what do I do? I don’t even know what’s happening or where to start!”
That was me 1 year ago, and to be honest, that is still me today! Sure, things can get a little easier with time, you find a routine, you get to know the needs of the person you are caring for and learn how to read the tell-tale signs something bad is about to happen. But you still struggle, you still put on a brave face, you still doubt yourself and you still make mistakes – know why? – because we are all human! We didn’t ask for this ‘role’, this isn’t how we saw our futures, this wasn’t in our 10 year plan – but this is the life that has landed in our laps and do you know what? We all do the best we can, because we love the people we care for and I have no doubt that if the tables were flipped, they would do the same for us.
I am writing this to hold out a supportive hand to all my fellow ‘Carers’ of FND.
Take care and remember to do something for yourself as well as the person you care for. It is just as important.
Carer Partner
10 Tips That Help My Relationship Survive My Chronic Illness
They say you fall in love when you least expect it.
I have always found this to be true. I have been in love as an adult three times in my life and each time was unexpected. I wasn’t looking, just doing my usual weirdo bookworm introvert thing and… then bam! The entire experience of someone I didn’t “see” coming and sweeping me off my feet was always tremendous and life-changing.
I suppose you could say the same for chronic illness and pain. It blindsides you much like love but only leaves chaos in its wake, like a bad break-up that never ends. It’s a heartbreaking thing and will affect everything, including and especially your primary relationship: your significant other.
Being chronically ill can change everything in your life, but one thing that usually gets hit the most is your relationships, specifically the one with your romantic partner
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How a Marriage Survives When One Partner Gets Sick
What we can learn from couples dealing with chronic illness.
Roanne awoke in the ICU to find the left side of her body paralyzed; she’d had a stroke on the operating table. Her physicians didn’t know if she’d ever recover. She was 43 years old.
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Michael Weisman, Roanne’s husband of 17 years, was at her side when the surgeon came in and said, “Sorry you stroked, but heartwise you’re fine now.” Then he walked out, leaving the Weismans alone to deal with the fact that Roanne, a medical researcher, writer and mother of two small children, had become disabled overnight.
Roanne, who suffers from a condition called Marfan syndrome (a genetic disorder of the connective tissue that often causes heart problems), left the hospital with nothing more than a prescription for physical therapy. Back home in Newton, Massachusetts, she could not shower or dress herself, although she could shuffle along with a four-pronged cane. She told her husband, “My life is ruined.” At first, Michael, a trial attorney, helped her to do what she couldn’t. But, she says, after several weeks he told her, “A lot of people can be your caregiver, but only one can be your husband, and that’s the relationship I want to focus on.”
Roanne was incensed at what she saw as his betrayal. “How could he not want to bathe me and cut my food and help me down the hallway?” she asks. “Didn’t he understand how much I needed him, how terrified I was? He was my husband—why wouldn’t he want to take care of me?”