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Re: Updates with my Caring Role

@WheresMySquishy Thank you for your updates. Yeah what happened with my grandma is pretty sad but we're just very thankful that aside from the dementia and the not eating thing she's healthy. She's also given us some interesting stories... like the time she hit another resident over the head with her walking stick when they had an argument Smiley LOL Nobody was hurt but they did have to report it to us.

I'm so glad that they've figured out what's wrong with your grandma, especially since it's a bit unclear where it came from. It's awful to hear how varied her cognitive state is at the moment though Smiley Sad I really do think when they're in a high-stress environment where they can't follow any sort of routine they used to it just really makes them decline. My grandma was more settled once she got into a home that suits her. Does she seem okay emotionally? Like is she happy or sad? My grandma was very upset when she started getting worse.


That's awful with your sister, I hope she's okay now! I'm glad you were around to help her. I still can't believe what happened with that neurologist, and I totally agree with what you're saying about how unhelpful it is when people say it's all in your head. Like, duh, that's because my brain has an issue, where else would it be?! I wondered if telling people that their illness isn't real has ever worked Smiley Frustrated Maybe if you can't report him you can at least recommend whoever referred him to you not do that again? I also am surprised about the psychiatrist, to me it sounds like they don't want to have to treat something difficult but that really seems to be against practice to pretend it isn't happening. It's not the same calibre of course but I had to call an oral surgeon referred to me about possibly looking at my wisdom teeth since they're a complicated case and they never got back to me either, so I guess I'm going to have to start looking around myself as well! 


I'm sorry to hear about your cold too! I'm glad it wasn't as serious but it sucks that you now are stuck not being able to do what you regularly do. It's probably for the best since your immunity is already low you wouldn't want to get anything else. Do you normally get the flu shot? Wishing you a speedy recovery Heart

Re: Updates with my Caring Role

@StormySeas17  I think it's so great that you can think about the positive things that have come out of that situation. It sounds like she's being well taken care of. Hahaha that's so funny about the argument! I'm glad no one was hurt though. Even before my grandma went downhill cognitively, she wasn't very social and was always the one to stir up drama and pick fights with people. Once we were away and she got into a fight with someone we hired for home maintenance for basically no reason other than she didn't like anyone coming to the house. So I'm expecting a lot of similar stories from her in the future haha.
It's a bit bittersweet that her physical health is improving but her cognitive state is a bit up and down. Today, she said that she cooked for my dad and put it in the fridge and he said, 'I'll go get it and we can eat it together then'. So that was a bit funny! Smiley LOL I agree that the environment is probably a factor. She must be really bored in there because she was keeping herself busy at home.
That's so sad that your grandma was upset about getting worse. Smiley Sad Most of the time we've seen my grandma, she doesn't seem to be too upset by what's happening to her. I think she lacks awareness a lot of the time which is a blessing in some ways. She knew that she was getting a bit forgetful months ago but I don't think she understands that she has dementia and she still thinks she's pretty good for her age. She was more bothered and embarrassed by her physical symptoms. Though, there have been times where she seems to be in pain or has gotten agitated and wanted to go home while she's been in the hospital. When she's aware that she's not at home, she thinks that she'll be able to go home again which is sad. I feel like with a lot of older people, they don't want to admit or feel as though they're regressing and don't want to be treated like they're children again. My grandma was like that when she was at home and didn't want to use her glasses, hearing aids, disability aids or have external carers.

Haha that's so true about where else would the issue be Smiley LOL We were telling her neurophysio and new neuro OT today about what the neurologist said and they thought it was quite an old-fashioned view too. They don't agree that it's voluntary. She has been struggling to do physio but they think that it could be more like an anticipation of pain thing. They gave us a brochure of some psychologists they refer people to for physical issues but they're pretty far, so I hope they do telehealth.
I agree about the psychiatrist! It's like she doesn't want to get involved because she thinks it's too difficult for her to treat, even though she's one of the world experts in FND. We were disappointed that neither the neurologist nor the psychiatrist could recommend supports or someone else she could be referred to as an outpatient. We're still waiting to hear back from the psychiatrist and it's been at least two weeks since our GP wrote to her. They were also supposed to have a meeting this month but no one has told us anything about that or organised anything.
That's so annoying about the oral surgeon! I get really annoyed when people don't follow up too, especially when they say 'It's your fault for not chasing us up' when I complain about them not getting back to me for weeks. We had to wait literally months for a delivery of a headrest for a wheelchair we rented for my sister (it was delivered without the headrest so it was illegal for her to use it in a wheelchair taxi), with each company we contacted saying that someone would call us back. My ophthalmologists can seem a bit 'airy fairy' and don't do long appointments but at least they were all quick to refer me to another one that was more experienced in a particular part of the eye or treating a particular problem. I don't understand why some other specialties are reluctant to refer patients on if something is outside of their expertise. I think a lot of issues would be better treated with some collaboration from different professionals.

My cold is a lot better now! I usually get badly affected by colds but this time, I didn't get my usual symptoms and it wasn't that bad. I felt a bit silly getting tested for COVID etc. only for the nursing home I go to to ban all visitors for the time being the next day anyway. I don't usually get the flu shot, but I had to this year because it was required by the nursing home and they covered the cost. I've always regretted not getting it in previous years because I've gotten the flu heaps of times.

Re: Updates with my Caring Role

Hi all! Another update: Grandma has finally been moved to a rehab ward. We ended up knowing the nurse unit manager on the ward so we're happy that she is going to be looked after. She was a bit better with visitors this week, but tried to eat sandwiches with a spoon. She can walk a bit with a walker and sit in a chair. She is saying that it's hard to walk because she's sore, but we think it's because she's been lying in bed for so long.
My sister is getting another team meeting later on in September, but I don't really have a lot of hope that it will lead to anything productive. The hospital recommended that she do physio at home, so we have been getting all these physios, an OT and other supports at home but I honestly feel that she did better as an inpatient. One of the physios even said that she has become worse since she started seeing him and he doesn't know what to do to help her. The OT today just did colouring in with her because she wants her to be able to trust her before doing more strenuous things. But yesterday, my sister came up with the idea of having a friend record her voice saying to move her legs and she was able to move her legs when she listened to the recording. Unfortunately, she overdid it and this resulted in a symptom where her muscles spasm and she can't move. We were thinking of just waiting until the team meeting and then deciding which supports are beneficial and which aren't, because they all cost money. In my view, she really should be in hospital long-term because she gets worse when she's not in hospital, but they don't want to admit her due to her seizures. And the psychiatrist still hasn't given us any word or referred her to someone else she can see, which is very frustrating. It's a bit like ping pong or pass the parcel.
The thing is with my sister, she can unconsciously move and do some things when she is not aware that she is doing them, but she does not register that she is doing it. To her, her limbs are moving by themselves. It is hard for her to do physio because she can't do things that they tell her to do. We've been told that this is a typical FND thing.

Re: Updates with my Caring Role

Hi @WheresMySquishy 


Thanks for keeping us updated on the situation and it seems like that your grandma is in a better place, both with the ward and with the progress she's making with walking and eating, as well; that must bring you and your family a bit of relief.


It makes sense why you'd be feeling more frustrated with what's happening with your sister's treatment, especially if it seems like she would be able to improve more if she was in the hospital. It sounds like it's a bit of waiting game as well with some of the other services, like with the psychiatrist, and that your family is doing all you can to keep on top of things and to figure out what the best step would be.


During this time @WheresMySquishy  I also wanted to check in on you and see how you've been coping with all of this? You're going through some really stressful things at the moment, what have you been doing to try and take care of yourself?

Re: Updates with my Caring Role

Thanks for the kind words @TOM-RO! Smiley Happy
My grandma is still in the rehab ward, but she's been moved to another room. She can copy what the physio shows her which is good because her English is limited. She was a bit weird cognitively today. She told my dad to say hi to his parents (my grandpa died before I was born and she's his mother). He asked her who his mother was and she said she didn't know, and she also didn't know what our last name was. Some of this isn't new though, she was saying similar things well before her hospitalisation. I think my dad is in denial and thinks she got dementia all of a sudden when I think she's had it for many years. I don't think she will be safe and able to manage at home, but she keeps asking when she will be able to go back. It's more of a relief that she's in the hospital, but it is hard to visit with the restrictions. We're thinking of setting up a video call so she can see my sister.
My sister was able to use her affected hand the other day which is good news. She isn't aware that she's using it though, so her physios have told us to praise her when she is using it. I hope they will be able to work out a plan moving forward in the treatment.

I've been trying to focus on my hobbies on the weekends. Sometimes, I don't feel like giving peer support on the forums because of everything that's going on. Last week, I got to get out of the house for a bit to go shopping which was good because my family members keep getting on my nerves. I'm thinking of seeing if my extended family want to go out this weekend too because they seem bored and we haven't done much for fun since my grandma was hospitalised.

Re: Updates with my Caring Role

Hi @WheresMySquishy,


It definitely sounds like a tricky situation with your grandma, and something that really has to be taken step by step. It can be pretty common for older people to get confused over names/dates, and I'm glad to hear that at least right now your grandma is in the hospital and being cared for as much as is possible. Video calling also sounds like a sweet idea, and a good way to stay in touch while also staying under these restrictions.


It absolutely makes sense that sometimes you don't feel like you have the energy to give peer support on top of all the other attention and care you are giving to your grandma and sister, and I hope that you've also been able to save some time and attention for your hobbies, but also just for some special @WheresMySquishy time. The outing also sounds like it could be a good idea; definitely keep us updated!

Re: Updates with my Caring Role

Hey @WheresMySquishy I'm sorry I disappeared for a couple weeks but I'm so happy to hear your updates! I have to be honest when I read that your grandma was trying to eat a sandwich with a spoon it made me laugh Smiley LOL It sounds really nice that you've found a rehab option which suits her so well! With the asking when she can go home thing, I found with my grandma that the best thing to do is to either just say 'not yet' or if they're really insistent they want to go now, to leave by saying that you're just sorting something out and then make your way out of there. It gets rid of the trauma of having to tell them no, you're not coming home with us this time, and they often forget that you were gone very quickly. 


It's so interesting hearing that your sister is having more luck with some simpler methods, like having someone record their voice or to just give her lots of reinforcement so she remembers what she did right. I hope that you are able to hone on in the things and people who are trying to help, even though there's a lot of people who aren't Smiley Sad


I was also wondering how you are going, it's nice to know you were able to get out of the house! Is there anyone in your life you've been able to talk to about these things?

Re: Updates with my Caring Role

That's okay @StormySeas17. It's good to hear from you again! Smiley Happy Your support means a lot to me.
Haha, it made me laugh too. Smiley LOL My family and I always try to find some humour with my grandma and grandpa. They say a lot of funny things. A family friend visited my grandma the other day and my grandma didn't recognise her and called her 'Some lady' which was funny.
My grandma had another ACAT assessment yesterday, and she couldn't really answer many of the questions, which wasn't surprising because she had one in January and couldn't do much on that measure either. My dad considered having her at home and hiring someone to stay with her 24/7, but I doubt her home care package would fund it and it would be very expensive and impractical. She can walk with assistance, but she's definitely worse than how she was before, both physically and mentally. We researched nursing homes but we weren't sure whether to go with one that's closer to my dad's work so that her friends and extended family can visit, or something closer to our house. I think we managed to agree on a big nursing home that caters to people who need high care and have dementia yesterday. They have a lot of facilities, have good reviews and don't have any complaints against them. My dad is also familiar with that one and the people who work there. He spoke to the intake officer and she said she was happy for my grandma to come in. Because she had no assets, the government will take 85% of her pension and cover the other 15% for the costs associated with the room. She's still in rehab at the moment but they want to discharge her soon. They told her they can't do anything else for her at the moment, and sadly she misunderstood and thought that they were saying she was going to die, so my dad reassured her. She also got to talk to us over video chat which was good. She says she misses us a lot.

Unfortunately, the ACAT translator told her that she would be going to a nursing home and she got a bit sad. But she wouldn't be happy with home care either, so either way we cannot win. The only way she would be happy is if she can do her own things unassisted, but it's not safe for her to continue like that. I strongly feel that having external carers would improve her health and help prevent something bad from happening to her again. My dad just told her that we will try the nursing home and see how she manages. I think those are good ideas for dealing with her asking when she can go home. We're hoping that there will be some way to organise day release for her so that she can visit us for a few hours at home, go to church, etc.

My sister's hospital was a bit hopeless this week with organising outpatient mental health support for her. They put us in touch with some people, but it was obvious they knew nothing about FND and we would rather go with a support who knows about it. Luckily, my dad heard about a clinical psychologist who used to work with that part of the hospital and treats FND. She has agreed to see my sister over telehealth and work with the hospital and her other psychologist which is good. We were wondering, 'Why didn't the hospital tell us about her?' Smiley Frustrated

I usually talk to my extended family every day. They come over sometimes so it's good. Smiley Happy
I loved chatting with my nursing home residents too, but I'm a bit confused about the current guidelines regarding visiting and volunteering because I keep getting conflicting information. I've tried emailing them, but I'm expecting another update with regard to the guidelines soon. It's funny because one of my nursing home residents around the same age as my grandma accurately predicted that my grandma will end up having a fall, have to go to hospital and then to a nursing home. That was months ago and I want to tell her that she was right when I see her again. Smiley LOL

Re: Updates with my Caring Role

Thanks for all the support everyone! Heart
I just wanted to let you all know that my grandma was finally moved to the nursing home yesterday. The staff say that everything is okay. Today, they sat her outside with some other ladies. She is walking with a walker. We're not allowed to visit this week, but the guidelines are going to be updated soon.
My dad has to come with her to a hospital for some scans on her back next week to see how the fracture is healing and interpret for her.
He decided to just put her as respite for 4-6 weeks to see how this home treats her and if it is a good fit for her. We were considering some other homes, but at the moment we can't visit them due to COVID cases in the area. I've never visited this one, but it seems good and the other residents look well taken care of. I'm happy that she's in a place where we can have peace of mind about her safety.

As usual, my sister's FND psychiatrist still has not contacted us or referred us to any mental health services or people who treat FND as an outpatient. But the hospital is holding a meeting next week to decide the next steps.

Re: Updates with my Caring Role

Hey @WheresMySquishy 


Thanks for the update. I've just caught up on your thread. I'm glad to hear that things are going better with your grandma. It seems like your family are putting a lot of thought and effort into getting her the best care, which is so lovely.


I'm sorry to hear about your sister. From what I read of your posts, it sounds really tough Smiley Sad. You mentioned that the hospital don't want her as an inpatient due to seizures - do you mind elaborating a little on that?...I thought it would have been the opposite...i.e., seizures would be a reason to keep her in hospital. How is she coping with these awful symptoms? And how are you coping seeing her in that state? Hopefully the hospital meeting will help with strategizing your sister's next steps.


Thinking of you during this difficult time Heart