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Re: Updates with my Caring Role

@Maddy-ROThanks for the lovely message of support. Heart
I agree! The hospital had a meeting in February and they decided that due to her seizures, they could not proceed with a readmission because they were getting in the way of physio. I feel like they should at least focus on getting her to learn psychological strategies to help with the seizures and try to get them to stop happening, but they have not shown us any strategies or mental health services for her to see at home, so we have had to find our own (they recently put us in touch with a mental health service in the area, but we spoke to them and they knew nothing about FND or non-epileptic seizures and we don't know if they will be able to treat her yet). We were told that she would be readmitted when the seizures improve to allow physiotherapy and rehabilitation. We were also initially told that the seizures will stop quickly on their own. But it's been about a year and she still has the seizures. I've watched some neurologists on YouTube and one of them has said that he theorises that non-epileptic seizures become a learned response to help deal with pain and distress, so they don't often go away on their own. To me, it makes no sense that they would go away without treatment at this point. Another FND neurologist we have spoken to from interstate says that people don't often get better with non-specialist treatment. We also coincidentally met one of her nurses from when she was an inpatient a week or so ago and she was angry that the hospital had left her like this. I know it is not all their fault because they were only admitting patients with EDs to her ward due to COVID-19 but they have not done much for my sister all year and they could have at least referred us to people who treat FND as outpatient instead of us having to find them ourselves. At the moment, she has a tooth abscess and might need a root canal, and we have had to find our own dentists to look at it and organise treatment (she might end up having to go to another hospital to have it done under anesthetic due to her seizures making treatment difficult). I can't help but feel that her complex health issues would be better addressed as an inpatient, although she doesn't particularly want to go back because the staff were rude to her last time she was there which resulted in her seizures getting more prolonged. I feel like the hospital and FND psychiatrist she used to see have just put her in the 'too hard basket' category.

It is hard for other family members to see her have the seizures, so some of them don't visit often, but at this point I am used to it. It was very scary a few months ago because she started throwing up when she had the seizures, but luckily she hasn't done that in a while. But it is hard realising that she is still like that. The nurses in the hospital would also do some of the caring, so it was a source of respite for us. At the moment, she doesn't have a lot of coping strategies other than distraction. When she is playing games with us, her seizures happen less often which is good.
I've also been focusing more on my hobbies, journalling and self-care. I write down a lot of my frustrations as well as good things that happen. I've installed a bunch of mental health and meditation apps and they've been a big help.

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Re: Updates with my Caring Role

Thanks for sharing that with us @WheresMySquishy, that sounds like a really difficult situation. It sucks to hear that you have not been able to get the support that you need with your sister. It must be really hard to not feel heard or understood by the professionals that you have interacted with. Oh no, needing a root canal is the worst. I feel so sorry for your sister, I hope she is not in much pain. You sound like such a supportive and caring sister. Your sister must be so happy that she has you by her side Heart It is so great that you have been looking after yourself by spending some time on your hobbies and self-care, it is so important to look after ourselves during these hard times !
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Re: Updates with my Caring Role

Hi all!
Today, we had the meeting with my sister's hospital. They are looking into other psychological services for her. One of the things that they're looking into is an inpatient psychological admission at another hospital which apparently has people that know about FND. As her carer, I think that this is a good idea. The only problem is that it's far from our house, and we're not sure if they will accept her. Nothing has really been decided yet. The hospital agrees that she needs to be treated by a team that is experienced with FND, but no one can tell us where their own FND psychiatrist is or why she can't be treated under her, which is frustrating. We feel that we're being snubbed by her and we don't know why.
My sister may need to be transferred to yet another hospital to have dental work done under anaesthetic due to her seizures. We told her hospital about and they gave us some recommendations, but we haven't contacted them yet.
The hospital wants us to continue with the in-home professionals we have found and gradually reduce her pain medication over the next few months. She is still in a lot of pain, but we were told that this is linked to her emotions and that once she learns psychological strategies, her pain will reduce. They told us they were glad we found a clinical psychologist with experience in FND and has worked with them, but I can't understand why she was not recommended to us before or why the hospital has been so slow to arrange other supports. We told them about some of her symptoms and were told that they had seen them in other FND patients.

In other news, my grandma is settling into her nursing home. She has been saying some weird things and wants to go home, but the other day she went for a long walk with a frame with the physios and they were really happy about this. Her fracture has healed and she's been able to mix with the other residents. Visiting times are still limited, but her room looks really nice. I think the limited visiting could be a good idea because it might help her get to know everyone in the home and settle into a routine, especially as she was dependent on us for so long. We have been advised by the nurses to tell her that she is not going to be able to come home so that she stops asking, but at the same time they were concerned that she would get emotional.

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Re: Updates with my Caring Role

hey @WheresMySquishy

 

This must all be a lot of information for you and your family to take in; it sounds like that progress is being made in some areas but is still stalling in others, and that must come with a lot of mixed emotions as well especially with your sister finally getting some help, but also not understanding why it wasn't given to her before and how a lot of things about her treatment are still unclear.

 

It's also great that your grandma's been recovering more, physically! Hopefully she will be able to make some friends with the other residents, soon as well.

 

So how have you been coping with all of this? Have you been able to settle in for tonight?

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Re: Updates with my Caring Role

Oh no im so sorry for all that stress you had to go through @WheresMySquishy You are such a strong person Heart

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Re: Updates with my Caring Role

That's so true @TOM-RO, we have been told that inpatient treatment would be more beneficial than seeing supports once a week or once a fortnight. The plan is to see if she can get a psych admission at a hospital further away from our home and then return to her 'main' hospital for rehab. The challenge is finding people who specialise in FND in adolescents. My parents aren't that keen on having to go to a further away hospital and it hasn't really been explained to us why closer supports cannot be arranged. We were originally told that my sister would transition into a nearby hospital once she reaches a certain age.
Thanks for asking about me. I think I ended up watching a movie.

My grandma had a stomach bug today and she was acting a bit strange. I think it's just due to the bug though. She seemed forgetful and she and the staff are finding it hard to communicate with each other because she doesn't know much English. I suggested to my parents to try to get her to point at pictures or respond to gestures, but my dad said that she doesn't know if she will be lucid enough to do those things. Another thing I was thinking of was for us to teach the staff some basic words that she can understand.
If anyone has any other ideas, I'd love to hear them. Smiley Happy

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Re: Updates with my Caring Role

Hi @WheresMySquishy I haven't been around to see some of these updates but it does sound like things are FINALLY going somewhere with your sister, and that's awesome if so! I don't know why the hospital didn't tell you about the FND psychologist, I suppose that would be too easy Smiley Frustrated I really hope that everything goes your way for these next few steps. It sounds exhausting having to do all of this research by yourself on her condition too. Is she able to understand her condition at all, or do you find yourself taking up that role for her, if that's okay to ask?

 

Also nice to hear that your grandma is getting better! I think that once she settles into a routine and finds out what she likes and doesn't like to do it will be easier. I think that the staff maybe having a booklet or sheet of words she might say and their translations could be helpful, if they put it in her room or client file maybe? Not sure. Let us know how things have been, I can see it's been a little while since you responded! Hope you're okay Smiley Happy

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Re: Updates with my Caring Role

Hi @StormySeas17! Thanks for all the support and reading through these updates (I know they're super long). I'm happy that some more things are being considered for my sister. Next week they are having another conference about what to do regarding her mental health. Unfortunately in the past, we have had to face very long waiting times to receive treatment and she has also been discharged prematurely which has resulted in her getting worse as an outpatient (which is partially how the seizures started in the first place), so I don't want to get too optimistic. What we have decided to do is reduce some of her physical supports for the time being to give us a bit of a break and focus on the psychological side of things.
Yesterday, the hospital was able to arrange a special needs dentist from somewhere else to see her at home. They don't want to treat her themselves because she is 'high risk' and want to make her have dental treatment at the hospital and stay there overnight under her main doctor. They're thinking of extracting her abscessed tooth and then her wisdom tooth will hopefully erupt to cover the gap, and doing fillings on her other teeth at the same time. But she has to be under a general anaesthetic due to her seizures. There might be a long waiting time for treatment too.
She understands her condition somewhat, but she doesn't want to do research on her condition or read about it. I'm usually the one who researches it and finds resources. I don't think it was adequately explained to her by doctors at first. We initially had no idea about what the diagnosis meant either. The FND physio I found tried to explain FND and pain to her though.

I was thinking about doing something similar for my grandma. She is communicating better with them in English now which is good. When she was younger, she had some English lessons but I think she's forgotten a lot of it. She is fairly bored there. We thought about bringing her radio but we also have to bring her headphones because she always blasts it.
The staff thought she had cellulitis in her leg, but her leg has been red for years anyway. They have put her on antibiotics to be on the safe side. There was a bit of a mishap where her arm was sore, but they might have grabbed her in the shower to prevent her from falling. They want us to apply for her to move in permanently next week, which we will probably do.
Her cognitive state is still up and down (I still think it's part of her dementia) but she was having a good day when she was last visited. I had another lady in the nursing home I volunteer at this week who was almost ten years older than her but much better physically and cognitively than her. She could do and remember a lot of things that my grandma can't. It was a total 'wow' moment for me. Smiley Surprised