Hi all, I'm a long term lingerer but first time poster here. I'd love to know other people's view of my situation.
Mum has been confused for a few years now but got a diagnosis of vascular dementia yesterday after a CT scan. She's been in hospital for a week after her confusion seriously stepped up and I rang 111 who said to take her to A&E (she'd also not take any medication for a week as we were using one of those automated alarmed pill boxes and unbeknownst to me she'd forgotten what it was for and took the batteries out of the 'annoying beepy thing'). They tried to get me to take her home but I had to dig my heels in for safe discharge/needs assessment/care plan and they've been great from then on. Shes now having visual hallucinations, thinks people have been in the house, doesnt think it's her house, wants to go back to the house she grew up in, is putting stuff in really odd places (bin in the freezer, freezer food in the cupboard, house phones hidden all over the place) hoarding things, thinks her remote controls are phones, not washing or brushing her teeth, wearing the same dirty clothes every day, believes that people from her youth have been coming in and moving things etc. Fortunately she can't drive and doesn't really wander (yet), but she leaves the front door wide open, isn't eating or drinking properly (has got into a habit of eating raw defrosted freezer food and is adamant that it doesn't need cooking). Due to distance I can only pop in once a week or once a fortnight, which I was previously doing to stock the pill dispenser and safety checks. Before the hospital visit she flat out refused any home help eg carers or meals on wheels and felt that her memory problems were just due to the trauma of dad dying 1.5 years ago (he was also concerned about her memory before he died).
Its taken me bloody ages to convince her to do financial power of attorney but we finally got it done in Nov, due to Covid delays it took ages to come back but I'd just registered it with the bank before her confusion stepped up.
Shes very anti-doctors (has been all of her life) so I'm amazed I even got her into hospital. She has literally refused to get into an ambulance before when thr GP has called one with concerns about her confusion.
The hospital social worker is due to do a mental capacity assessment but has mentioned to me that when she spoke to the ward staff they had said that they couldn't imagine mum living at home in her current state, even with carers. Respite care in a care home has been mentioned.
Due to tricky dynamics between me and my mum (who before her illness could be quite narcissistic and nasty to me) I made the decision a while ago that moving in with us isn't an option. Might sound callous, but I had to work very hard on my boundaries and attend quite a lot of therapy as an adult to retain a relationship with her. We also have a very small house thats in the midst of a renovation, with no scope to extend as its a small terrace, so its just not feasible. My brother has offered to move in with her but for various reasons, including her very clear refusal every time its mentioned, I'm not sure this will work. He also has his own personal family, financial and mental health circumstances that raise some reg flags there. She also didn't recognise him when I showed her a picture of him yesterday - probably because I've been more active in visiting and care. She seems to recognise my fiancé more (he comes with me on medication visits) and my brother has stated that he's not willing to be her main carer and will need to leave the house and go away at points for various things if he moves in.
When I went to visit her on the ward yesterday, although confused, she was actually happier than shes been in a while. She is loving talking to the nurses and other patients. She loves food regularly being delivered to her and she likes the company - even when confused she'll happily talk and joke with anyone. She had moments of realising that things aren't right with her brain and we spoke about how it might be nice for her to live around other people - at points she seemed quite keen on the idea but at other points she wanted to go home (although she's forgotten where home is and is often referring to her childhood home). She herself said, 'I don't know if I'd even recognise the house' and at one point when I explained that the doctors aren't sure that its safe for her to go home alone she said 'fair enough - where will I go now then?' Shes aware that she doesnt have many friends and asked how she can meet more people and make new friends.
From what I saw on the ward, I genuinely think she actually might be happier in a home as shes lonely. She wont accept help to get her out and socialise when she's at home but once she's in a place with other people already there she seems to thrive. Her personality seems to be, fortunately, becoming less confrontational and friendlier as a result of the dementia. Shes also kinder to me when staff are present and I actually really enjoyed my visit for once yesterday. She has sad moments when she realises dad is dead but in general, as long as there's someone there to talk to, she's fairly happy on the ward.
The issue is cost. We've spent our limited life savings on our house and both now run our own businesses - money is tight to say the least. Mum has savings and owns her house, but with the cost of care homes she'd be sorted for 5 years max. Shes fairly young (77) and apart from high blood pressure is in very good physical health, so she may well be around for much longer than 5 years with increasingly complex needs.
To add further complication, she had me in her 40s and we're potentially looking at starting a family ourselves, so money will be even tighter if we do. We just can't afford top up fees unless there's a financial miracle in 5 years time.
Do I try visiting carers at home, with the knowledge that her needs will increase and it will eventually fail, and wait for things to get worse before moving her to a home (but have more money left for a home when her needs increase) or do I move her into one now, at a time where she's potentially open to the idea and can enjoy the social aspect (and probably have a much better quality of life for the next 5 years) in the knowledge that money will run out and we'll be at the mercy of wherever the council want to place her afterwards?
I'm aware that having a social care needs assessment, with a hospital social worker who actually seems proactive and seems to care, is a real gift, so I dont want to waste this opportunity and get it wrong!
Mum has been confused for a few years now but got a diagnosis of vascular dementia yesterday after a CT scan. She's been in hospital for a week after her confusion seriously stepped up and I rang 111 who said to take her to A&E (she'd also not take any medication for a week as we were using one of those automated alarmed pill boxes and unbeknownst to me she'd forgotten what it was for and took the batteries out of the 'annoying beepy thing'). They tried to get me to take her home but I had to dig my heels in for safe discharge/needs assessment/care plan and they've been great from then on. Shes now having visual hallucinations, thinks people have been in the house, doesnt think it's her house, wants to go back to the house she grew up in, is putting stuff in really odd places (bin in the freezer, freezer food in the cupboard, house phones hidden all over the place) hoarding things, thinks her remote controls are phones, not washing or brushing her teeth, wearing the same dirty clothes every day, believes that people from her youth have been coming in and moving things etc. Fortunately she can't drive and doesn't really wander (yet), but she leaves the front door wide open, isn't eating or drinking properly (has got into a habit of eating raw defrosted freezer food and is adamant that it doesn't need cooking). Due to distance I can only pop in once a week or once a fortnight, which I was previously doing to stock the pill dispenser and safety checks. Before the hospital visit she flat out refused any home help eg carers or meals on wheels and felt that her memory problems were just due to the trauma of dad dying 1.5 years ago (he was also concerned about her memory before he died).
Its taken me bloody ages to convince her to do financial power of attorney but we finally got it done in Nov, due to Covid delays it took ages to come back but I'd just registered it with the bank before her confusion stepped up.
Shes very anti-doctors (has been all of her life) so I'm amazed I even got her into hospital. She has literally refused to get into an ambulance before when thr GP has called one with concerns about her confusion.
The hospital social worker is due to do a mental capacity assessment but has mentioned to me that when she spoke to the ward staff they had said that they couldn't imagine mum living at home in her current state, even with carers. Respite care in a care home has been mentioned.
Due to tricky dynamics between me and my mum (who before her illness could be quite narcissistic and nasty to me) I made the decision a while ago that moving in with us isn't an option. Might sound callous, but I had to work very hard on my boundaries and attend quite a lot of therapy as an adult to retain a relationship with her. We also have a very small house thats in the midst of a renovation, with no scope to extend as its a small terrace, so its just not feasible. My brother has offered to move in with her but for various reasons, including her very clear refusal every time its mentioned, I'm not sure this will work. He also has his own personal family, financial and mental health circumstances that raise some reg flags there. She also didn't recognise him when I showed her a picture of him yesterday - probably because I've been more active in visiting and care. She seems to recognise my fiancé more (he comes with me on medication visits) and my brother has stated that he's not willing to be her main carer and will need to leave the house and go away at points for various things if he moves in.
When I went to visit her on the ward yesterday, although confused, she was actually happier than shes been in a while. She is loving talking to the nurses and other patients. She loves food regularly being delivered to her and she likes the company - even when confused she'll happily talk and joke with anyone. She had moments of realising that things aren't right with her brain and we spoke about how it might be nice for her to live around other people - at points she seemed quite keen on the idea but at other points she wanted to go home (although she's forgotten where home is and is often referring to her childhood home). She herself said, 'I don't know if I'd even recognise the house' and at one point when I explained that the doctors aren't sure that its safe for her to go home alone she said 'fair enough - where will I go now then?' Shes aware that she doesnt have many friends and asked how she can meet more people and make new friends.
From what I saw on the ward, I genuinely think she actually might be happier in a home as shes lonely. She wont accept help to get her out and socialise when she's at home but once she's in a place with other people already there she seems to thrive. Her personality seems to be, fortunately, becoming less confrontational and friendlier as a result of the dementia. Shes also kinder to me when staff are present and I actually really enjoyed my visit for once yesterday. She has sad moments when she realises dad is dead but in general, as long as there's someone there to talk to, she's fairly happy on the ward.
The issue is cost. We've spent our limited life savings on our house and both now run our own businesses - money is tight to say the least. Mum has savings and owns her house, but with the cost of care homes she'd be sorted for 5 years max. Shes fairly young (77) and apart from high blood pressure is in very good physical health, so she may well be around for much longer than 5 years with increasingly complex needs.
To add further complication, she had me in her 40s and we're potentially looking at starting a family ourselves, so money will be even tighter if we do. We just can't afford top up fees unless there's a financial miracle in 5 years time.
Do I try visiting carers at home, with the knowledge that her needs will increase and it will eventually fail, and wait for things to get worse before moving her to a home (but have more money left for a home when her needs increase) or do I move her into one now, at a time where she's potentially open to the idea and can enjoy the social aspect (and probably have a much better quality of life for the next 5 years) in the knowledge that money will run out and we'll be at the mercy of wherever the council want to place her afterwards?
I'm aware that having a social care needs assessment, with a hospital social worker who actually seems proactive and seems to care, is a real gift, so I dont want to waste this opportunity and get it wrong!