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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. Heart
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.

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Re: Updates with my Caring Role

Hi @WheresMySquishy 

Oh my gosh that's..  a lot. No wonder you haven't been around that much!

 

What happened with your grandma sounds really frightening...

Especially going to the hospital and finding out so much at once.

I hope she recovers well and gets the care she needs.

 

I hope everything goes okay with your sister and godmother as well...

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Re: Updates with my Caring Role

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 Heart 

 

I'm so sorry to hear about your godmother as well Smiley Sad It sounds like it's been a massive week for you - sending big virtual hugs your way. 

__________

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Re: Updates with my Caring Role

Hi all! Thanks for the kind words. Heart

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.

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Re: Updates with my Caring Role

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. Smiley Happy
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.

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Re: Updates with my Caring Role

Hello @WheresMySquishy, I am sorry to hear that things have been rough for you lately. What you have described sounds really scary, so I am glad to hear that everyone came out of it fine. It is also really nice to hear that your grandma has been well. It is a good idea to take it day by day as it can be really helpful to adapt to change. Heart
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Re: Updates with my Caring Role

Hii @WheresMySquishy ! That definitely must've been so scary and exhausting to experience, but it's good to hear that your sister is okay and that your grandma is a lot better now! Taking it day by day is a good way to get through it, and I hope that you're also taking some time out for yourself every so often! :smile: Sometimes we can get so caught up in things happening around us that we forget to give ourselves some self-care! I hope your doing okay and wish you the best for your family and you! Heart ~
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Re: Updates with my Caring Role

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!

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Re: Updates with my Caring Role

Thanks so much for the kind words @drpenguin  @StormySeas17  Heart
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. Smiley Surprised 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.

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Re: Updates with my Caring Role

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. Heart