this post was submitted on 28 Jun 2025
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Big day today.
Ol' girl is going back home after her 3.5 week stay in hospital. Was only supposed to be 3-5 days.
After seeing her everyday, all I can say is that she really shouldn't be (not in my control). Seeing her last night shook me a bit. Basically she's been refusing 1/2+ the food when there and also refusing supplements (like ensure, resource etc).
Problem is after her head strike a year ago she had a TBI which has caused what they call non amnestic MCI which is a fancy way of saying impaired mind but memory still there. Problem is the only way to slow it down is food and excersise, both of which are not going to be easy.
So taking off work for a bit heading over to p's to see if this will work. I'm not fazed by doing most of the stuff for them (cooking / cleaning / washing etc), really doesn't take much time. Ol' boy will get a cleaner in probably soon.
What I'm mainly worried about is that shift in personality over the last 3 weeks.
For example last night she asked me to turn the light down because she wanted to watch TV. So I did. She said 'that's great', goes around to the other side of the bed and snaps at me 'why is it so dark in here!'. That is not her.
I'm hoping getting some food in her after basically being on a hunger strike will ease that sort of thing up, but if it doesn't then we're in for a ride.
Guess we'll find out.
Thank you all reading this stuff. Not exactly light and airy.
Feels. You got this, for the moment. Look after yourself too.
personal experience
Hate to say this, but I think it's time you and your Dad got together and worked out a strategy for further cognitive decline management. You just can't give up work to do the basic care stuff - that's a non-continuing proposition even though it works well to look at in the short term. I'm talking trigger points for when more care is needed, and strategies to cope. And what happens if your Dad or you gets sick etc. Really really need to be on the same page. Yes this will be embarrassing to discuss. And some of the options will sound pretty cold and clinical but need to be considered. There's professional help available for counselling/discussing this sort of thing, and using that might help your Dad and rest of fam take this seriously enough to be useful. Hospitals/doctors/clinics have contact info - and you may need an official letter from your mum's doctor to access it.I found myself doing what I thought would be short term care for my mum, and found out that the rest of my family thought I was doing it all so they didn't have to, and this went on for months and months. This got old very very fast and I had to really put my foot down to come up with a more equitable arrangement. Some family members still haven't forgiven me. One sibling's spouse is still snarked that she was asked to participate (minimally) and that was more than 10 years ago. Eventually Mum had to go into full time residential care and she HATED it. But there was no other viable option that permitted the rest of the family to have some kind of a life.
End of life can be very distressing to all when its long drawn out and there's no possibility of major improvement and a return to full independence. Just saying.
Thankyou so much for your personal experience. Really appreciate that advice. i think I'll get the ball rolling on that fairly soon.
This.
I was in a very similar position except it wasn’t in my wheelhouse to make alternative arrangements.
You are such a good egg. Healing takes time and a whole lot of resources, so having you there is going to give her the best chance of an effective recovery.
Ensure and the like have an artificial taste that a lot of people can't tolerate. There used to be a flavourless supplement, I'll have a sticky beak and see if it's still around. Edit: it's called procal powder. Still around. Different company now through. There's two main things; cook what she likes/feels like, and making sure every mouthful is as calorie dense as you can make it while she still likes it. You're doing good work there, and it's so so tough. We are all here as a resource and a safe venting place.
Really good advice, thankyou. Definitely going to try to make every mouthful count.
Agreed Ensure gets old very quickly and Fortisip is even more intensely sugary. Vom. One way is to make a cup of coffee as usual and pour in a swig of Ensure as if it were a coffee creamer. It dilutes it to a more bearable level. Decaf coffee with vanilla Ensure probably tastes a little bit like a fancy Starbucks coffee.
Edit: They also do pudding/custard!
spoiler
You can heat milk in the microwave and add sugar (optional) and instant coffee for a ‘latte’ or use hot chocolate packets to get some fortified milk down. Sometimes this is easier than a meal and you can tailor it to her tastes. Hydration is probably a higher priority than food.Another option is nibbles. An open pack of biscuits next to her with a cup of tea. Perhaps even a lollipop or a cracker would be enough to stimulate her appetite and get her through any overly-hungry aversion. If she likes ginger perhaps try some ginger sweets like ginger ale, ginger bears, Gin Gins or Chimes. If it’s nausea there are dissolvable wafer tablets like Ondansetron that might help. Even some peppermint tea.
Also is she just not hungry, is she forgetting to eat, is she feeling sick, is she fatigued or having motor issues so it’s not worth the effort, is she having trouble swallowing? Is the food and drink not sitting well?
I don’t mean to bring up anything undignified but sometimes after bowel surgery there can be issues with things like post surgery gastroparesis.
Also after a prolonged period of not eating or only liquids, beginning to eat again can be quite difficult and unpleasant. A period without eating (or being able to eat) in itself can cause atrophy of the digestive system and bring on gastroparesis. Cue effortful eating.
Surely the hospital has a dietitian and a gastro that might get on top of this.
Feeding tubes might be an option but are an incredible removal of autonomy and may be a lot of risk for the results. They’re not always recommended.
Edit: Also as you get older, with cancer, or at end of life you can lose your appetite. I’m very sorry. I’m hoping your mum perks up a little and more support can be worked out smoothly.
You are always welcome always to vent and just get it all out here!
It isn't light or airy, no, but it doesn't have to be. This is what is happening in your life and to you, and it is worth talking to people you trust - even if it's just this forum 💜 I get the pain of watching your mum deteriorate, even though my experiences cause was different, and it isn't easy to look after them. The chores are easy, the mental energy and internal stress it takes to just be present and witness to it is draining. I'm so sorry you and your mum and dad are going through this right now, I hope your mum is able to settle down now she is back home and will accept food. Sending you all my love and good vibes, if I could give you some of my mental energy I would do that too 💜💜💜
Big thanks.
I think the mental energy and stress will slowly catch up. Guess we'll see if I'm cut out for this (I have my doubts eek).
I hope things improve for her. Maybe now she's going home her eating will improve? My mum mostly hated hospital food and ate better when I was cooking. It's a hard time you're going through and we're always here when you need to vent 🫂
Thankyou. I'm really hoping it's the same thing that happens here
Oh this is tough. You are doing good. And vent away. Hoping things improve when she gets home
Thanks :) Hoping so too.
I’m sorry to hear :(
I wonder if some kind of home support package might come in a bit sooner. But also I know there are many things not in your control and post-release care isn’t always great
Thankyou. Definitely looking at home support packages. Definitely looking at the speech path, physio and OT stuff.
Also I hope I’m not overstepping but I would really suggest some supports for you. Not kidding.
Caregiving (which is what you’re doing) can be incredibly difficult and it can have a severe lasting effect on your physical and mental health.
Particularly for informal care which doesn’t have built in protections, supports, or breaks for the person doing the care. Particularly if it’s someone you’re close to. Particularly if everyone else is stepping back and putting the onus on you to manage everything.
Don’t do this alone.
Definitely not overstepping. Reaaly thankful for the advice. Honestly atm I'm open to all of it and really appreciative of everyone here and their thoughts.
Hey man I'm sorry that you and your family are going through such a hard time. I hope everything calms down soon ❤️
Thanks dude me too :)
Hopefully your mum feels better being at home, and starts to eat more there. Take care of yourself, too