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Updates with my Caring Role
Hi everyone,
This past week has been really busy for my family and I and I'm sorry I haven't been on the forums as much.
On Monday, my grandma (the one who lives with us) had a fall. She didn't call out or anything, so I think she fell asleep on the floor until we knocked on the door of her room hours later. She seemed okay after that and was walking around. She didn't have a cough or a fever, or any other symptoms. But then on Tuesday, we noticed she wasn't eating or drinking. So my mum convinced my dad to call an ambulance and she was taken to hospital to get checked out. She was diagnosed with pneumonia, which she's had before, although they couldn't find anything like a virus or COVID-19, so we think she might have aspirated something. According to my dad, she had been having trouble with chewing her food recently but I'm not sure if it's related. She also broke her back, although we're not sure if it's from the fall or something else, and if she moves she could be paralysed. At one point, they thought she had a mild heart attack, which could have been from her dehydration.
My grandma is okay now and remains in hospital but I think her dementia symptoms have become worse. She has to be fed and won't drink on her own either, and she is mostly bedbound. Sometimes, she says weird things or becomes agitated. But she looks physically better. I think she will make it through her pneumonia but will need increased care in the future. We were told that she could go to a rehab hospital and then possibly to an aged care home, with four to six weeks in hospital in total, but things change every day and the hospital will advise us about what the future holds for her. I don't think we will be able to care for her at home from now on. She needs someone to be with her 24/7 and help her with a lot of things. I've been having to give a lot of updates to my family and explain her past history because a lot of them weren't aware that she had symptoms or needed so much care previously. I think a lot of them were just in denial or put it down to anxiety or old age. But they've been getting really worried and keep making out like she's about to die which isn't the case, so I'm kind of like the spokesperson and keep having to reassure them.
Additionally, my godmother's (our dad's aunt) rare brain cancer has returned and it's big. We found this out a few days ago. So I think she will be starting chemotherapy again and waiting on more information.
To top it off, my sister had some new symptoms yesterday, so I've had to talk to her medical team and send them videos of her. She might have to go to hospital too but we are waiting to see what their colleagues say. She seems a bit better today than yesterday though.
So as you can tell, it's been quite a hard week. I'll try to be more active this week now that my grandma is a bit more stable. I've really missed being on the forums and am really grateful for everyone's support.
We are doing okay and have been doing things to distract ourselves. The next few weeks will be quite busy as we know more information and arrange other things. The situation changes every day so I'm sorry if I don't reply much.
Oh no im so sorry for all that stress you had to go through @WheresMySquishy You are such a strong person
Hey @WheresMySquishy ,
Thanks so much for posting this update - it sounds like it's been an incredibly tough time for you with your grandma. We went through similar things with two of my grandparents, it is so hard when they're at a stage where they may not be able to care for themselves at home/ stay in the family home any more. It sounds like you're an amazing advocate for your grandma and great link for your family as well - I'm guessing that may get exhausting sometimes, though. We are always here if you need to vent / need any support. You give so much to this community and you deserve the same support back
I'm so sorry to hear about your godmother as well 😞 It sounds like it's been a massive week for you - sending big virtual hugs your way.
Hi all! Thanks for the kind words.
My grandma is getting better in terms of her infection. She is still not eating and drinking on her own and is slurring a bit of her speech but she seemed to be more alert and looking better. She had some agitation and behavioural issues on Monday and on the weekend. On the weekend, she kept screaming that she wanted to go home and asking for my grandpa who passed away before I was born. Then on Monday, she wasn't talking much and started saying she was dying and to give my sister and I a kiss goodbye. My parents were really worried and thought she was going to die but I wasn't too concerned because this is her usual behaviour when she is at home, just amped up due to her delirium. Luckily, doctors couldn't find anything serious such as a stroke and her mood is better now. She will be moved to another hospital where she will be put on three weeks of bed rest due to her fracture followed by three weeks of physio. We're just waiting for a bed to be made available and for her to be transferred.
It has been very hard for other family members to see her symptoms and come to terms with her dementia. I feel like I have been coping better because I spent the most time with her before and was used to how she was like.
Good news! We managed to finally get my sister a telehealth appointment with her hospital's neurologist to assess her new symptoms. They are a bit scary because they are affecting her tongue and throat and making her throw up.
Additionally, I finally received some medical test results back and they don't seem to be anything serious. My ophthalmologist was happy with how my eyes physically look and thinks the experimental treatment I am on is helping too. I have to stay on it until at least December and my vision is still reduced but I am hopeful.
The early hours of this morning were rough. We almost called an ambulance for my sister because she was gurgling and seizing continuously and we thought she was having trouble breathing. It was really scary. But then she eventually came out of it and was fine. 🙂
My grandma is okay and is having an iron infusion today because her iron levels are low. She looks a lot better and recognises visitors. We're still waiting for the hospital transfer. I personally don't see how we can keep caring for her at home and a lot of the family agree that we should consider other supports. We are taking it day by day though.

Hey @WheresMySquishy I hope you're doing okay! It sounds like everything is happening all at once and it's hard to know even what to focus on. I hope everyone in your family is getting some time to step away from it even though it's all very close to you. It's really scary when dementia becomes more severe with things like falls- that's what happened to my grandma and she ended up going into aged care straight from rehabilitation. It was actually a blessing because we weren't having to pull her out of her home, and even though she missed her home a lot it was a good excuse to be able to just delay explaining that she probably couldn't go back. She ended up getting more friends at the aged care, the staff were lovely and there were lots of activities to do. I think when the time comes it will be pretty obvious and your family although very stressed sound like they know their limits and have her best interests in mind. I also hope for the best with you and your sister!
Thanks so much for the kind words @drpenguin @StormySeas17
My grandma has been moved to another hospital for rehabilitation. Her mental state is kind of up and down. Sometimes she acts strangely and doesn't recognise family members and other times, she is lucid. Her abilities have gone downhill a lot. Today, she didn't recognise my mum but talked about my sister and I. When she's in that state, she kind of just curls up and stares at the ceiling with her mouth open. I don't think she understands what's going on around her. She wasn't like that at home and she's lost a lot of weight. But on a positive note, another grandmother from her church was also at the same hospital and they got to chat with each other.
My sister is okay. She is still having the symptoms but we are waiting for the hospital to see her over telehealth. I hope they can suggest some sort of treatment because most of the time when she has a new symptom, it's all talk and no action.
That sounds like a really scary experience @StormySeas17. It's really helped me to hear your family's perspective. My grandma doesn't want to go into aged care, but I think we will have to send her to a residential setting. I'm glad that your grandma adjusted to it and ended up finding some positives about it. We will probably explain it in a similar way to my grandma. I think it can be really distressing to explain why they can't go home. If she wants to go home, I will probably just say, 'You can go home when you get stronger'.
I've found that with the aged care residents I volunteer with, some of them wanted to go there and have kept themselves busy there, while others want to go back home, and some others don't have a clue that they're there. But the staff are really nice and there are lots of things to do at the one I volunteer at. My great-grandma had a really bad experience with the facility we put her in, but that was a long time ago and there are a lot of better ones out there.
Hey @WheresMySquishy
I'm so sorry to hear things have been hard for you... I can also relate to things getting harder as grandparents reach an age, and get more frail. Hospital visits are a regular thing for my grandpa at the moment.
I just wanted to pop on and say I hope that you are also doing ok and that you are able to have a bit of time to look after yourself and your health too! Keep the updates coming! We'd love to support you along the way.
Wow, I'm so sorry you're going through that with your grandpa @ayrc_1904. 😞 It's so hard for families when people get older. Thanks so much for the support! I really appreciate it.
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.
Hey @ayrc_1904 I'm so sorry to hear about your grandpa 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 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?
Thank you @StormySeas17
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
That's so sad about your grandma @StormySeas17. 😞 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.
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
Thanks so much @ayrc_1904!
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.
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 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?
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'.
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
Hopefully you have a better experience with someone else next time and get some better answers!
Thank you for the update! Sending you all my best wishes
Hi all! Thanks so much for the support @ayrc_1904 @StormySeas17.
@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 :(. 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.
@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 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 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 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
@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! 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. 😞 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 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.
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.
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?
Thanks for the kind words @TOM-RO! 🙂
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.
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!
