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Discussion in 'I have dementia' started by sandysan, Feb 1, 2016.
thanks again and yes i do find that message a bit harsh but thats ok thankyou
OK, so I understand your Mum has been awarded Continuing Health Care. My late Husband was also funded that way BUT, even though it was possible to have funding at home, the maximum you could have was 21 hours a week. I understand this could differ from area to area. The problem still stands as once CHC is awarded the CCG calls the shots. They can (and do)decide what route to take. I was always invited to such discussions and I must admit they were decent people.
The fact is your Mum is not accepting care at home and I'm pretty sure the CCG will not waste funds sending carers to her home when they are not accepted. That could be seen as a waste of public money.
I'm very sorry that you are so very upset BUT I have to agree with the other posters who have advised taking the CH route.
Yes I agree with Lyn and others, one of the people I know has 28 hours a week - I don't know the exact amount the others have, so it isn't really much in terms of each 24 hours. And they do monitor closely whether or not it is working. One other person I know who was on CHC funding has just opted for the care home route. Anyway if she isn't accepting care you are just fighting a losing battle and causing yourself a huge amount of stress. If you went the care home route you would be able to care in a different way and both you and your mum would be able to get so much quality out of the time you spend together xx Worth thinking about
If your mum is not accepting care at home, the CHC will be unable to fund care at home, even though in theory it is an option in some cases, where relatives are living in with the PWD and covering the times that the CHC funded carers aren't there . As the CHC people provide the funding, they have the say in how it is spent, and it will be in the best interest of the health and safety of your mum.
It would be impossible for the carers to do their job in your mums home, with her record of aggression at home and in the hospital.
The discharge officer at the hospital should provide you with a list of care homes suitable for your mum which are acceptable to them for funding - it really is the best possible option. You should visit them and find one that you are happy with and then they will assess your mum. It will be much better for your mum to be there rather in a hospital. There are good care homes out there with well trained staff capable of managing challenging behaviour. My husband is in one and as much as it breaks my heart that he is there, I just could not manage him at home.
You can tell her that she is going to stay in a convalescent place until she is better, and then just continue with the love lies. I hope you can overcome your fears and accept that this is the best option for you and your mum - as others say, you can then do the loving and leave the caring to others.
You can, but the truth is "full CHC funding" will not cover 24/7 coverage in her own home, particularly as she is in fact refusing care. Full CHC does not mean "at unlimited cost". You can want what you want but in this case, I think you are expecting far more than you can expect to get I'm afraid.
I like that term "love lies"!
dols from seeing my mother
i have now been banned from the hospital , due to the lies that the nursing staff tell they all stick together , in a clann,
because i have voiced my opinion , my mother is still in hospital she has all red marks on her arms , and she fell out of bed on a hi vis unit , and wasnt found till the next morning , she was slumped on a bed with her hopital nightdress that pens at the back all open exsposing her private parts when people and visitors walking past could see this , she was also passed her food on the commode when leaking and a cleaner came to clean round it , as a dauther i wasnt happy at all in but i did go to the nursding staff to tell them that the care they were giving her was unacceptable and unprofessionl i did say to them if the nursing staff cant look after a person properly then they shouldnt be in nursing , about an hour later the matron came down with security and said i was presenting myself as being threateing to the staff , i was escorted out the hospital by security gaurd ,
THEY HAVE PUT A DOLS ON MY MOTHER DEPRIVATION OF LIBERTY FOR HER OWN SAFETY , AND I AM TOLD THAT IM INCLUDED IN THAT , meaning my mother cannot see me she has vascular dementia and i think this is very unfaier ,as they are depriving her of her rights ,
because i cant go in the hospital now they have deprived momof seeing me
can anyone suggest what i can do
Do you have a close friend who will go with you to PALS at the hospital to try to get a resolution to this situation? You need someone who is going to support you and help you to keep very calm. The minute you lose 'calm' you also lose power. You need to go to them with a list of your concerns and tell them that you really must visit Mum and ask them to help you to facilitate this. PALS can be very helpful, tell them that you really need their help because you are desperate to see Mum. They may be able to let you visit with a member of staff while the situation is being sorted out but there are two things I would strongly advise - one is to keep CALM and the other is to do your very best to cooperate - if you are seen to be cooperating they are more likely to help you. I am so sorry you are suffering so much with this x
Putting someone under DOLS in hospital is completely standard and there so they have the right to prevent someone from leaving the hospital ward if that would put them at risk. It's there to give someone a legal safeguard. It doesn't usually mean they are safeguarded from another person, but as you have been prevented from seeing her, that is the indirect outcome.
My OH was in hospital in December. He was put under a DOLS due to his lack of mental capacity. If they hadn't and he'd tried to wander off, they would have been powerless to stop him. I also pointed out shortcomings, although they weren't as bad as in your case, and I was not banned. Forgive me for any assumptions but a lot lies in the delivery. If you point out things calmly and politely, there is no reason for anyone to ban you. If you appear loud and aggressive and they think you are a threat, they have the right to call security on you. If you feel you WERE calm and polite and they still removed you, take your complaint to PALS. I believe I advised you of that before, and not just about your access but also about your mother's treatment or lack thereof.
Best for the patient.
This scenario may come to us all, that tipping point when care other than in a specialist unit is unsustainable, we are just one the reality oily s that we could not do this on our own without it impacting on our health.
It was interesting that with the right care that challenging behaviour had been reduced overall, have you talked to her GP if they have any suggestions or recommendations. My mother is becoming more assertive I can see in the future with her decline continuing issues. What about day care to a specialist care home or a week trial.
My uncle became aggressive, that is unfair on his long suffering wife to endure plus cope with that behaviour. A previous poster suggested sectioning as a facility, from my first hand experience this is just not an appropriate place to put these patients, even with MH issues the trauma and upset this would cause on the basis that she has capacity is unmentionable. The majority of times the MH patients were passive, they had the staff to deal with every eventually.
What we might all want to do in our heart may be unrealistic in reality, I now have PoA so my quest plus responsibility to do the best for my sweet mother paramount.
Letting go some onus for others to care for our loved ones, is never easy or simple.
Good luck some beneficial advice in this thread that we can all learn form those who already have experience plus willing to share those suggestions.