Added the lovely Emma to the list! Emma has been consulting on Phil’s dementia for the last few years and has always been so kind.
Today was eventful shall we say. Started ominously but ended very well. Be warned, I’m going to have a moan but I promise an upbeat ending… are you sitting comfortably? Then I will begin.
Phil has been increasingly awkward when it comes to food, and we were getting worried that he would starve himself into further illness. Not uncommon with dementia sufferers. We all know what an awkward bloody prima donna he is about food, and he is exhibiting that tendency with all his power. The hospital food in the first ward was pretty decent, better than school dinners anyway… but today he has been in full revolt. Therefore I went over early at lunchtime today to play Food Enforcer and read him the riot act along the lines of “You will not leave this place if you starve yourself, if you hate it here, eat, drink, be strong, go home” The trouble is, he has forgotten it 10 minutes later and you can only keep it up so many times.
I turned up to find he had been moved from the original ward to a new ward specifically for geriatric patients. When I found him he was in a frenzy of distress, cursing and thrashing about. He took a lot of stern talking to before he began to exhibit some surly calm. It’s common for a move to cause distress in folks that are chronically bewildered so I assumed they had moved him expecting a long term stay. This made it extra hard to explain to Phil that he had to stay an indefinite amount of time in the new ward.
It turned out quite quickly that Phil’s bitter dislike of the new ward was well justified. The new ward is very very different from the temporary holding ward, the staff are abrupt, disinterested and unhelpful, whereas in the previous ward they were kind, helpful, attentive, and Phil was very smitten with at least two of the nurses particularly a very kind Filipino nurse who was lovely with him.
Found him perched on a slippy plastic chair where he sunk down till his chin was on his chest, that’s where they left him, possibly for hours. Try to sit him straight and he just slides down the slippery glossy plastic. Shifted him back to the bed.
Ask for a different chair and get told that while that’s not the right chair, they don’t have any others.
First interaction with a nurse was me being told, “Don’t sit there, you can’t sit on the bed”
Ask for more chairs, you get told to “go find one yourself, they are all about the ward”. Basically, don’t hassle me I’m busy.
Do you have a wheelchair so we can push him around to relieve the boredom. “No, no wheelchair” I mean, what would a hospital be doing with wheelchairs eh?
Extra pillow? No, we are low on pillows. Evidently this is a “BYOPillow establishment”
Twice Phil needed to go to the loo, twice we asked, twice it took so long that by the time they turned up he had an accident. He is not so far gone that this doesn’t make him feel awful. Even using the emergency buzzer didn’t help, waited over 5 minutes. So he’s had several pairs of trousers today.
Getting anything done was a nightmare, surly and begrudging was the overall atmosphere of the place.
The food… wow, no wonder he wouldn’t eat. They must think they can fob anything of on people too gaga to complain. Check the picture.
It’s hard to define but the atmosphere was more akin to a battery farm than a place of caring, so different to everyone we had come across at Kings before. I think geriatric care must be a ghetto.
Nobody had mentioned that he was being moved. I heard from Emma who also had to find out by going to the old ward and discovering that he had been moved on. An outright lie, I checked the phone numbers they had on record, Bethwin Rd and my mobile, both were correct. Neither had rang, no voicemail. So I went on a hunt, I asked a Sister and she said that she had overheard that Phil was going to be released home tomorrow… So there you have it, hearsay. I told them I wanted to speak to the doctor, and an hour later the doctor turned up. She was very nice, and confirmed that they saw no reason to keep Phil in.
Obvious question, why move a patient with dementia for one night? A lot of stress could have been avoided. But I guess we at least got to see what Donne ward was like… He is going back there over my cold dead body.
So, deep breaths, Phil is coming home tomorrow.
How is he?
Physically he is roughly where he was before the turn last Thursday. The nurses told me that he had been wandering all around the ward, which is sizeable. I saw him walking very strongly at times although he gets tired out quickly. He does have occasional moments where he completely blanks out while standing up, I think the technical term is ‘absences’. You have to be ready to steady him.
Mentally I’m afraid he is noticeably worse. He rambles on a lot, talking basically gibberish, he quite often inserts random words now where he can’t find the real one. It gets pretty abstract. He is often trying to say something real (not always) but he jumps subject often multiple times within a single sentence. It can be very hard and tiring trying to keep up and try and keep engaged in a conversation, to get that feeling of connection. I tried some videos from his British Steam History series, but he gets bored quick. We are hoping that being in his safe comfortable house will calm him down, I think that’s a reasonable expectation, the ward is causing him real stress.
I have arranged for someone to come round in the next few days to assess Bethwin Road for safety and anything else they can think that we need to care for him properly. They will probably be sticking wall bars all over the place, he is a compulsive furniture walker, the gibbon of Bethwin Rd, if we can provide a wealth of safe things for him to latch on to, he will do well I think.
How will it go? We aren’t sure, things like going to the toilet might not be so easy as before, we don’t know. We are looking at this as an experiment, can we look after him? Who knows, take things one day at a time, do our best, get all the help we can and see how it goes. Mum is quite stressed about him coming home, though relieved to get him out of an awful place, but I think having the bed to herself a couple of nights did give her some much needed respite.
Like I say, started badly, ended up on the best possible note. Coming Home!!!
Sorry for the long email, had stuff to get off my chest.
Thanks to all for the kind messages, they are particularly helpful to Mum who was saying how she feels supported on all sides by so many kind people. I make sure to read her all your replies don’t worry.