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Re: Updates with my Caring Role

Wow, I'm so sorry you're going through that with your grandpa @ayrc_1904. Smiley Sad It's so hard for families when people get older. Thanks so much for the support! I really appreciate it. Heart

Little update about my family members. My grandma will be on another few weeks of bed rest, then they will see if her fracture has healed and if so, try to get her out of bed. They put her on a medication to reduce the swelling in her legs, which she's had for years, and it's helped. She said her chest and stomach were sore, but they can't find anything. They want to do an additional test. My dad tried to explain it to her but she didn't understand. My parents want her to go to a nursing home because it's going to be hard for us to care for her at home. She is now 100% dependent on others for her care needs. The other alternative is we get people to care for her at home but we feel that an aged care facility will be safer and she will have better care there. So I've been researching ones and talking to our friends who have gone through this to see which ones they recommend.
My godmother will go to hospital and start chemotherapy soon.
We had an appointment with my sister's neurologist and it was quite unproductive. It was kind of a circular conversation. The neurologist didn't know what functional neurological disorder was and asked us why we wanted to see her when the hospital's psychiatrist is the FND expert. We had to explain that we hadn't asked to see her. The main doctor wanted her to make an appointment with us when we wanted to talk to her psychiatrist. She basically admitted that the delays in treatment by the hospital made my sister's symptoms and prognosis worse. She also said that if my sister continues to be bedbound, she will get muscle wasting and won't be able to ever walk again. She sympathised with us and said what we are going through is really scary, but in the end, she did not offer any kind of treatment or way forward. She just said that there are some new tests that have come out in the last few months, but these will require a hospital admission. It's hard for my sister to travel and knowing the results of the tests won't change the outcome or inform treatment. They seem to be more for the hospital's research, so my parents don't want us to do them. She just said she would talk to the main doctor treating her and wait to see what a neurologist from another hospital, who we made a telehealth appointment with a while ago, will say. So, the appointment was overall a waste of time. I think it was more for the hospital to reassure us that her seizures are non-epileptic, which we already knew.

Re: Updates with my Caring Role

Hey @ayrc_1904 I'm so sorry to hear about your grandpa Smiley Sad I hope things start improving a little bit. It's awful dealing with that kind of uncertainty. My grandma has been in dementia care for a very, very long time. She doesn't remember any of us, can't eat by herself, just isn't herself anymore. It's very frustrating because I would like her to be able to move on without wasting away. The one good thing is that she's happy, which she never really was when she was lucid.


@WheresMySquishy thank you so much for the updates. I'm sorry to hear that your grandma has been in pain but I'm glad that she's starting to get some good care. It sounds scary about the chest pain... hopefully they can get her tested soon. I'm glad to hear that your family has agreed that she needs to go into aged care. It's a scary process at first and isn't easy but it certainly is better for everyone involved. I would definitely recommend to try and get an aged care that reminds them of what their lifestyle was before. My grandma's first aged care had lovely food and staff and did a lot of outings but was very full of people and felt a lot like a hospital. The second place had carpet and safe places to walk around and was a lot less mobile. I think the second one has been better for her because it feels more homely and she was never big on food or outings anyway.

I hope your godmother is okay Heart I wish her luck with her treatment.

I'm sorry about that experience- it really does sound like a waste of time. It almost sounds like a hurdle, at least you won't need to go to them again. I think it's sensible not to bother with tests if you know what the issue is already and just need to find another form of treatment that might work. It sounds like your next appointment will be more productive hopefully?

Re: Updates with my Caring Role

That's so sad about your grandma @StormySeas17. Smiley Sad I've heard people say that a person with dementia isn't suffering, it's mostly the family who suffers with their loved one's symptoms. My grandma can't eat by herself at the moment but the nurses have been encouraging her to and she seems to have moments where she is lucid and moments where she doesn't remember family members. I'm leaning towards these symptoms as being more dementia-related rather than delirium-related because she sometimes did similar things at home. My grandpa also has dementia but he's not as affected as she is and doesn't have these symptoms (yet).

My grandma is okay. Nothing much has changed, although she keeps forgetting who visited her and saying weird things. I spoke to someone at the nursing home I volunteer at and we agreed that she needs to go to a home for sure. The issue is finding a good nursing home that has people that can speak the same languages as my grandma as English isn't her first language. But they gave me some suggestions. We're leaning towards putting her in a nursing home under the organisation I volunteer with so that I can visit her and because they're generally good quality.
I don't think my grandma would like a home that has a lot of activities or outings. When she was still at home, she didn't want to go out and just wanted to watch TV and cook (although it's too unsafe for her to cook now). My particular nursing home has some residents with dementia, but I think it might be better to find a more dementia-specific home with a memory support unit and such like the one a family friend is in. My great-grandmother was in a nursing home towards the end of her life and it ended up not being a good choice for her and she hated it there, but at least we have an idea of what to look for now. I think it can take a lot of trial and error to find a suitable home and my residents have told me they've had to look at several before settling on the one I volunteer at.
It sounds strange, but I'm happy that the hospital is looking after my grandma. I feel as though she is safer in the hospital than she was at home. It has been quieter without her here and I have more time for other things now that we don't have to care for her and sort out problems she has caused all the time. I think she's only stayed away from the family home on two other occasions in my life.
I hope my godmother will be okay too. She's starting chemo. We have been told that her particular type of cancer is treatable so we're hopeful, but we still don't have a lot of information about it such as whether it has spread because she's still having a lot of tests.
My sister has another appointment with a different neurologist with more of an interest in FND, so hopefully it will be better but I'm not getting my hopes up. Our GP is trying to make an appointment with her psychiatrist, but I'm not sure if she will end up seeing her.

Re: Updates with my Caring Role

Hey @WheresMySquishy 

A lot has happened for you! I just want to say that I think you're so strong! The health of family is something that is so important to everyone. When people are ill, it can definitely get overwhelming. But I'm so proud of how you are managing things and handling your caring role for many of your relatives. 

Keep up with the updates! Wishing you the best Heart

Re: Updates with my Caring Role

Thank you @StormySeas17 Heart

Dementia is such a hard thing to deal with for all family members involved. You are so strong! I agree with the thought that dementia can often be harder for supporting family and carers. You are so strong! Keep me up to date Heart

Re: Updates with my Caring Role

Thanks so much @ayrc_1904! Heart
We were given an update today by the doctors looking after my grandma. Physically, she is doing a lot better and we were told that she is doing well medically and pain-wise, which I'm happy about. Her infection is going away and they want to get her sitting in a chair and doing physio soon. She is having a lot of hallucinations. Today, she said that the Virgin Mary took her by the hand and led her to Mass, and she's been saying that family members have visited when they never have. I've heard this can be a  symptom of dementia, but it's a bit strange because she wasn't like that at home. I think it has to do with her being in an unfamiliar environment. They told us that they will do an assessment of her mental state later on. We spoke to the doctors and told them that we can't care for her at home with her symptoms, especially as we are also caring for my sister, and they said they will discuss alternate care arrangements closer to her discharge.
Nothing much to report with my godmother and sister. My godmother has left hospital. She has a central line in and has to go back in two week's time as inpatient. She has been having some side effects from the chemotherapy. When she had chemotherapy the first time she had cancer, she ended up being hospitalised with sepsis, so she was anxious about having it again. I hope it doesn't happen again. We are still waiting on some appointments for my sister.

Re: Updates with my Caring Role

Hi all!
My grandma is okay and they have got her up with a walker and sitting in a chair. The fracture has healed and so they were happy to begin the process of transferring her to a rehabilitation ward. Because she's been in bed for so long, she has lots of aches and pains sitting in the chair so they have given her some strong painkillers. Medically, she is fine though. The hospital staff said she was a very strong lady. She just has a few crackles on her lungs, but we don't know if this is from her pneumonia or something else. Her mental state is still not good sometimes and she is still saying a lot of things that didn't happen and seeing things that aren't there. She got into an argument with the patient next to her because she thought that the patient would not give up her bed so my dad could sleep on it, which according to her led my dad to sleep in a chair all night. But the thing is, my dad was not at the hospital overnight and never has been staying overnight.
We had an appointment with another neurologist from another hospital for my sister yesterday and he was beyond useless. He claimed to have an interest in her condition, but does not seem to actually treat it or believe it really exists. Instead, he just referred my sister back to her hospital psychiatrist, who has already said that she does not know how to treat her and has not had any contact with her since last year (we even explained this to him). We thought this was very unhelpful as we were hoping he would refer us to someone else she could see as an outpatient. He also went against a lot of the research and things that world experts in FND agree on and what the hospital had told her, which made my sister feel as though she was stupid when she tried to explain her understanding of her condition to him as it had been explained to her by other professionals. He just told her that the seizures will stop when she is ready for them to stop and has the willpower to make a conscious decision to not have them, and for her to stop almost all of her medications and physio and immediately have surgery for an unrelated problem (which no surgeon is willing to do as it could possibly aggravate her CRPS and other issues which haven't been dealt with at the moment). He said that her condition is purely psychogenic, which FND experts do not agree with and research has not shown good results with psychological therapies alone. I agree that stress is a factor in her condition, but it is not the only factor or path to treatment and he was trying to push a narrative that it came about as the result of her being bullied in school or having experienced trauma, when she has not experienced those things and this 'theory' does not explain the onset of some of her symptoms. What he was saying reminded me a bit of Sigmund Freud's theories, which can't be proven because they have claims such as 'the reason you say you haven't experienced trauma is because it has been repressed and it's unconscious'. So, I didn't think there was any point arguing with him and just said 'What a waste of time' after the appointment was over. I really think that he only agreed to the appointment to make money and instead of wasting our time (he was also late so the appointment took over 3 hours), he should have said, 'Look, I don't treat this condition and I think you should ask her psychiatrist what to do'.

Re: Updates with my Caring Role

Hey @WheresMySquishy, I'm happy to hear that you've been getting a bit of relief with her being in hospital. I think we don't realise how much work but even responsibility and stress comes with caring for someone- especially when you don't have the luxury of being a full-time carer. My grandma also started hallucinating before she had her fall- she would be heard screaming and arguing with her dead husband Smiley Sad I think that once she's in a more comfortable environment that will go down a bit. I hope also that her lungs are okay.


I'm honestly in shock reading about what happened to your sister- that sounds awful. Saying that something is just all in someone's head and they just need to 'try harder' is the opposite of what treatment should be. Is there any way that you could report him or tell the hospital he shouldn't be treating people for this condition? 

Re: Updates with my Caring Role

Hey @WheresMySquishy 

Man... I can't believe what happened with your sister and the neurologist! 

He doesn't seem very willing to really listen to his patients and hear and acknowledge their experiences and symptoms properly Smiley Sad 

Hopefully you have a better experience with someone else next time and get some better answers!


Thank you for the update! Heart Sending you all my best wishes

Re: Updates with my Caring Role

Hi all! Thanks so much for the support @ayrc_1904 @StormySeas17. Heart
@StormySeas17  That's so scary what happened with your grandma. That must have been so hard for you and your family! I'm glad that it settled down once she was in a more comfortable environment.
A lot has happened since my last update. My grandma hasn't been moved to the rehab ward yet because they are waiting for her to be a bit more steady on her feet but they are looking to move her soon. They found out she had pneumonitis and they think she might have gout as well. They are treating the pneumonitis with steroids. I'm not sure where she got it from. I've heard that it can come from birds and she used to have birds when she was younger, or it could come from medications. Either way, they are treating it. She is still very up and down with her cognitive state. The other day, she told my dad (her son) to say hi to his mum and dad for her and today she started asking how family members who have died many years ago are doing. She was also asking about someone called Mary. I think she was referring to my sister or I but neither of us is a Mary. My grandpa and uncle went to visit her yesterday and she wasn't talking, just nodding and shaking her head. She didn't recognise them and doesn't remember them visiting. I read about a type of dementia and it reminded me of her but the hospital hasn't mentioned anything about it. They said they will assess her closer to her discharge and the nurses don't seem too surprised about her behaviour because they see it a lot of the time with older people.
My sister fell out of her commode chair the other day Smiley Sad. It took three of us to hoist her back into the commode. She couldn't bum shuffle or lift up so we could get the sling underneath her and she fell in a confined space, so I was worried that we wouldn't be able to get her out. But eventually we managed to do it. She is very sore but I don't think she has broken anything, just bruised herself.
I'm still really mad about the neurologist! I honestly think he just wanted to see us to make money. He has a very old-fashioned view of her condition. I don't understand how he can claim that her condition is voluntary and that there is nothing wrong with her brain. I've had restless legs syndrome for more than ten years and the current thinking is that it's a problem with how the brain uses iron rather than a structural problem. Autopsied brains of people with restless legs syndrome have lower iron in some parts. All the doctors I have seen know that it's probably from my low iron stores and that I have to take iron tablets to get my iron above a certain level. So, it is a functional problem. But this neurologist seems to think that 'functional' means 'voluntary' and 'psychiatric problem' which isn't the case. No one has said to me that I should stop taking my iron tablets and that I should make the decision to stop having restless legs. People with functional neurological disorder also have some changes on some brain tests compared to people without it. A lot of people with FND also don't have any mental health issues or emotional trauma. What this neurologist was saying made no sense and went against a lot of research. If you look up FND lectures on YouTube, other neurologists who actually bother to treat FND say the complete opposite. One of them was saying that neurologists shouldn't automatically pin everything down to trauma and that they are too quick to refer people to psychiatrists, who then say that it's not their problem and so FND patients have no one to go to. That's what's happening with my sister at the moment because our GP has written to her psychiatrist asking her to help us and if not, refer us to another psychiatrist or someone else she can see. But the psychiatrist never replies and acts like it's not her problem. Her GP was frustrated too and asked why the neurologist did not refer her to someone he refers patients to rather than telling her to go back to her psychiatrist. I wish I could report him @StormySeas17! The thing is, I've heard he's a really well known neurologist. But he really shouldn't be claiming to treat FND when he does not believe it is an actual condition and doesn't actually treat it. We initially found him because he claimed on an FND website that he had an interest in treating it. But I've heard other FND patients have also been told by neurologists that they just have to 'try harder'.
All this was happening while I had a mild cold I think I caught off my family members. I've tested negative to COVID, RSV and Influenza A and B so that's good. I've been banned from volunteering at my nursing home though due to outbreaks of COVID in the area. Maybe I'll use the time to get outside the house and do something fun when my symptoms have cleared up instead. The cold plus all the stuff going on has made me pretty tired.