Expert Q&A: Rare dementias - Tues 3 March, 3-4pm
Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.
You can either post your question >here< or email them to us at email@example.com and we'll be happy to ask them on your behalf.
I'm sure others will be along soon with better advice regarding this, but this happened with my mother-in-law last year in hospital. This was one of the tipping points for my mother-in-law to go into care. However she was completely self funding. Your situation is untenable and I think you should be saying to the hospital that your father will be unsafe at home and the current care package is not working. Unfortunately I can't advise on dealing with hospital social services as I have no personal experience.Im not really sure what we will be able to do when dad is discharged from hospital, hes in pain every time he moves, if the hospital find no real damage, then hes back home. But if we are unable to move him from his bed or chair, how will we cope....
I managed to speak with a doctor for the first time since Monday, on the phone (I'm at work today, and by the time I get to the hospital this evening the doctors will be long gone). It turns out dad has fluid in his lungs, and they will need to drain it, but are slightly worried because of his history of heart problems. They think the pain may be caused by this. I was able to give a full lowdown of dads health issues, minor falls and the fact he has started struggling with swallowing over the past month.I'm sure others will be along soon with better advice regarding this, but this happened with my mother-in-law last year in hospital. This was one of the tipping points for my mother-in-law to go into care. However she was completely self funding. Your situation is untenable and I think you should be saying to the hospital that your father will be unsafe at home and the current care package is not working. Unfortunately I can't advise on dealing with hospital social services as I have no personal experience.
I had to step back from dad. I live 18miles away from him and he is 4X a day and no overnight care. Immobile unless with a gutter frame and carer.Hospital social worker called this morning to say dad will be discharged today, I had asked if dad had actually been out of bed and moving around with a frame, the answer was no, but he was still fine to be discharged back home, so I'm starting to think my fears of him ending up bed bound at home may end up happening.
I explained that I had been trying to contact social services on a few occasions and nobody has got back to me, as I was worried about my dad's recent spate of minor falls. His answer was,"he has four carer visits a day and you live with him", believe it or not I am aware of that. I am also tired of having to explain my living situation and my girlfriend who I don't live with but help with her caring needs and spend time with when not at work.... This situation seems to be an alien concept to people...
I just realised something.... Nobody at any point has ever asked me if I am able to care for my dad, I'm not... but nobody asks, it's just expected so I try my best. Does this make me a terrible person? Anyway, somehow I've become his primary carer, just through feelings of anxiety and guilt.
Dude, I need to take care of myself.
I'm not surprised by the comments you received. I'm afraid there's an assumption amongst some professionals and others who don't know the situation, that family members "should be doing more ". I lost count of the number of times my husband told people he wasn't going to be a hands on carer. That's not to say that he didn't try to make sure his mother got the support she needed.Dad's home. The carer wrote they were here for an hour this evening, but i suspect not, didnt give him dinner as he told them he wasnt hungry. Blood sugars still high though, but as he hasnt eaten since being home i made him a sandwich to tie him over.
All day i was getting phonecalls, social worker, ward nurse, discharge team. His Tresiba insulin refil pen has been lost, so i have cartridges with no pen. Great. Medication supposed to include Donepezil, but cant find them anywhere and not in the blister pack. Brilliant. Not that it really seemed to do anything. Once again, great surprise from all when i say im at work and not home til after 7... "oh but you should be home for your dad" said one person... ffs.