Hi my name is Karen and for the past 12 months I have been helping to care for my mum, who developed rapid onset vascular dementia after having a serious of mini strokes. She has gone from being my best friend into a bedridden, incontinent, frightened child. We were told when she last left hospital after a water infection that she only had a matter of months to live so we brought her home to die. But as time passed her needs grew beyond our ability to help and the constant calling and shouting became more than we could cope with, it was tearing my dad apart, they've been married for 62 years. So although we didn't want to we have been forced to place her in a care home which said they specifically catered for end of life dementia. Unfortunately it's not what we were expecting, foolishly we thought she would receive one to one care but of course that's not been the case. She is so unhappy and confused and cannot understand why we've locked her away. She has her own room but the staff don't seem to realise she can't drink or eat by herself, she can't even move if she's uncomfortable. When we visit she is so thirsty and when we ask what she's had to eat they say oh she says no so we take it away.... She says no to everything if she's frightened and now I'm sorry worried we done the wrong thing... I sit and cry most days and feel oh so guilty, especially when she looks at me and asks why have I betrayed her when she loved and trusted me.... I feel that I can't complain as she is fully CHC funded, please does anyone have any advice. Thanks
Feeling so very sad and my sense of guilt is overwhelming me....
- Thread starter Lovely Lass
- Start date
You must complain. You may not be responsible for her day to day care but you are her advocate.
Complain to the manager and social worker. Request a meeting. Your mum deserves better. She may not get one to one care but should not be hungry, thirsty or uncomfortable.
If you are still not happy,, you should complain to the quality care commission.
Complain to the manager and social worker. Request a meeting. Your mum deserves better. She may not get one to one care but should not be hungry, thirsty or uncomfortable.
If you are still not happy,, you should complain to the quality care commission.
I agree with try again. She should not be left like this.
You may find that you have to move her to another home where she would be better treated.
You may find that you have to move her to another home where she would be better treated.
It’s irrelevant that she is funded through CHC. She is entitled to the best care and you must insist on changes. Sadly carers are always rushed off their feet but that is no excuse.
The guilt monster is something most of us can relate to, my mum sometimes say we’ve dumped her in her nursing home and she could be at home doing important things! She has no sense of reality bless her and cannot dress herself or stand unsupported. She can still feed herself but is losing weight rapidly which has contributed to a CHC assessment.
I agree you may need to find her a home which can provide fully supported end of life care but in the meantime know you did what was right for both your parents.
The guilt monster is something most of us can relate to, my mum sometimes say we’ve dumped her in her nursing home and she could be at home doing important things! She has no sense of reality bless her and cannot dress herself or stand unsupported. She can still feed herself but is losing weight rapidly which has contributed to a CHC assessment.
I agree you may need to find her a home which can provide fully supported end of life care but in the meantime know you did what was right for both your parents.
Thanks everyone, I knew it was going to be hard but nothing can prepare you for the rollercoaster of emotions and the feelings of loss. I'm going to the home today to talk to the manager nurse in charge of my mum's floor and I'm going to work out a full care plan for her. I'm grateful for all your words of support and will let you all know what happens xx
Does this mean that they have different floors for different needs?
If so, it may mean something as simple as a move to a different floor.
Yes the ground floor is for more mobile residents, the first floor is for those with advanced dementia and the second floor is palliative end-of-life. At moment mum is on the first floor. It is supposed to be a five star luxury home and on the ground floor it is. I'll keep you posted xx
Roll your sleeves up and put your makeup on ready for battle, be nice but firm don’t be intimidated and the mention of taking advice from authorities can work wonders. I find a mix of sounding like I’ve been in charge and a bit of humour works wonders In most situations, sound positive and don’t dither. You must think me horrendous but it works.
Oh dear......
Ive come across homes like this that say they specialise in dementia, but spent their money on things that look good in the brochure and skimped on staffing levels and training for the dementia sections.....
I agree with others - raise your concerns, ask to see her care plans and notes and ask to openly discuss if she is having her needs met.
My advice, for what it is worth, the guilt monster you feel is out of doing what was needed out of care for for her, for your family and for yourself. But sometimes the right choice still comes with emotional monsters. If you can, try to channel that guilt monster into assertively requesting she gets the care and attention she needs and deserves - I would also consider keeping a record of your visits and her care so you have it to refer to with the social worker and any other required party later.
I had to have a few difficult conversations with care staff when full of sadness and anger - it may sound daft, but I listened to a few songs right before which I knew would help me put on my big girl pants!
And as canary says, keep opened minded about trying another home.
Thinking of you, sending strength vibes, and hoping all goes well
My advice, for what it is worth, the guilt monster you feel is out of doing what was needed out of care for for her, for your family and for yourself. But sometimes the right choice still comes with emotional monsters. If you can, try to channel that guilt monster into assertively requesting she gets the care and attention she needs and deserves - I would also consider keeping a record of your visits and her care so you have it to refer to with the social worker and any other required party later.
I had to have a few difficult conversations with care staff when full of sadness and anger - it may sound daft, but I listened to a few songs right before which I knew would help me put on my big girl pants!
And as canary says, keep opened minded about trying another home.
Thinking of you, sending strength vibes, and hoping all goes well
Hi, That is the sort of home my sister is in , still awaiting more tests and funding although she was diagnosed back in June, she is a shadow of herself and there have been 3 best of interest meetings and the food issues were brought up every time and she is still not being supervised properly,
They just take food in plonk it down then go back and see if she has eaten it, knowing full well she has put down toilet or in the bin!
They have now put another D O LS in place because she keeps asking to go home ,not eating etc ,
I really dont get what is going on , although have done so much searching , asking questions at the home ,which wont tell me nothing as her grandaughter is down as next of kin ,
There is a very good reason why her grandaughter wants her to stay in there, but will leave it to you good people to think about , and I dont know who I can see about doing anything about it ?
If anyone can point me in the right direction I would be grateful.
Sorry to take over your post Karen , but once I start I dont feel like I can stop, as you know yourself by now it is so frustrating when there is so little you can do to help them , and sorry to say but a lot of the time the people who need to listen , DONT !
I hope you can get the help you need for your Mum xxxx
Right here's what happened yesterday. After reading all your replies I put on my best stern face, rolled up my sleeves and told the nurse manager exactly what I had witnessed and how concerned I was for my mum's wellbeing. I started with the 'I know you are probably experiencing staff shortages and are very busy but...' which to my surprise he replied actually they were fully staffed
Well once I knew that I'm afraid to say he experience my full wrath and indignation. I told it to him straight & that unless things improved I would be taking the matter higher & that it was the home's responsibility to properly care for those vunerable residents that had no voice of their own. He looked rather sheepish, appologised profusely and said that he would speak to all staff involved in mum's care. From there I went to see the 'wellbeing' manager, the head of nursing care and the financial manager . I told them everything and how I expected my mum to be treated with dignity and that no-one deserved to be left feeling thirsty, hungry or in pain. I also played the 'what if it was your mum or dad' card. They all agreed and stated how very sorry they were and that they had no idea what had been going on and an investigation would triggered. I then told them that I wanted to see and check mum's care plan and to be informed daily of her fluid and food intake, they agreed.
That evening I received a full breakdown of mum's food etc for that day... Result, hopefully.
P's. Last night was the best night's sleep I've had for a very long time, thanks everyone for your support xx
Well once I knew that I'm afraid to say he experience my full wrath and indignation. I told it to him straight & that unless things improved I would be taking the matter higher & that it was the home's responsibility to properly care for those vunerable residents that had no voice of their own. He looked rather sheepish, appologised profusely and said that he would speak to all staff involved in mum's care. From there I went to see the 'wellbeing' manager, the head of nursing care and the financial manager . I told them everything and how I expected my mum to be treated with dignity and that no-one deserved to be left feeling thirsty, hungry or in pain. I also played the 'what if it was your mum or dad' card. They all agreed and stated how very sorry they were and that they had no idea what had been going on and an investigation would triggered. I then told them that I wanted to see and check mum's care plan and to be informed daily of her fluid and food intake, they agreed.
That evening I received a full breakdown of mum's food etc for that day... Result, hopefully.
P's. Last night was the best night's sleep I've had for a very long time, thanks everyone for your support xx
So sorry you had to that @Lovely Lass. I've had a few concerns with my mother's current care home, but they've all been addressed without me having to get too tough with them. Well done for getting things sorted.
If they slip then report it to cqc. From memory there is a contact if you think someone is in danger
Is anything from today documented? If not please send them an email with the points mentioned.
Once you've itemised the problems you discussed , highlight the outcomes agreed by everyone and ask for a follow up meeting to discuss progress
Copy this to social services
You then have a written record if things slip and you need to progress at a later date . The manager can't just say you were unhappy and had some words or trivialise what has happened
Is anything from today documented? If not please send them an email with the points mentioned.
Once you've itemised the problems you discussed , highlight the outcomes agreed by everyone and ask for a follow up meeting to discuss progress
Copy this to social services
You then have a written record if things slip and you need to progress at a later date . The manager can't just say you were unhappy and had some words or trivialise what has happened
Very sound advice. Document names , ie it was agreed between John Smith , Care Coordinator and Freda Jones , Catering Manager etc
