Hi there, I am new to this forum. Very quick story. My husband has had PD for 21 years, young onset at 41. When he became very poorly, I had to fight for years and years but finally got contuing care. My husband lives at home with me, and we have a wonderful band of carers that come in everyday, (my angles). My husband has been in respite over the years but now indicates (he can't talk) he does not want to go anymore. I totally understand that, and I would prefer the girls that care for him so well to look after him 24/7 for a week, to enable me to visit my new granddaughter. Continuing care are saying no, they think he should go into a nursing home. I have said he will not go, I and he do not want him to go somewhere he is not known. Does anyone know if he has a 'HUMAN RIGHT' to stay at home and be looked after by carers who 'love him to bits', can continuing care say no to funding him at home, afterall they would be funding him in a nursing home. Look forward to any comments.
Treadmill hello and welcome to the forum. I have no answers for you, but I see your point in wanting your O/H to say at home where he knows his where abouts. Maybe a call to the HELPLINE: 0808 800 0303 they might be able to offer you some kind of advise.
Radz x
Radz x
Hi under human rights act the individual has the right to a family life, it probably needs clarification but my interpretation would be that a family constitutes more than 2.4 children. Suggest contact with the helpline as a way forward.
keep us up to date with how ou get on with this Treadmill .. I couldn't agree more with you ..My Mum went into a nursing home and I know which I would prefer for my husband after that experience . I know they do their best , or atleast most of them do but it's never going to be as good as being in your own home ..
Hello Treadmill,
We were lucky we had 24hour care and although it was difficult with so many changes of carer's we both would have wished to stay together until the end but because my husband has challenging behavour it was just too much.I was so ill as well that we had no choice for him to stay at home anymore, however if he ever gets to the stage where he is calm and managable then we will try to get him home again. He has one to one care from 7am until 11pm even in the home so you can see we tried very hard to keep him home.
I hope you can manage to get the PCT to agree to keep funding him and please let us know how you get on.
best wishes
vivian
PS
Just a bit of information for readers of the forum who live on their own please have a carelink buzzer and wear it at all times and have a bag packed with clothes and other written instructions of important information should you get ill, I have just spent most of the evening with a very dear friend with pd after someone spotted him on the floor through the letter box lucky I have his keysafe number and we managed to get help and he is safe in hospital. I suspect he has an urine infection and is slightly confused because of lack of fluids but it could have been a lot worse had we not found him so soon.
We were lucky we had 24hour care and although it was difficult with so many changes of carer's we both would have wished to stay together until the end but because my husband has challenging behavour it was just too much.I was so ill as well that we had no choice for him to stay at home anymore, however if he ever gets to the stage where he is calm and managable then we will try to get him home again. He has one to one care from 7am until 11pm even in the home so you can see we tried very hard to keep him home.
I hope you can manage to get the PCT to agree to keep funding him and please let us know how you get on.
best wishes
vivian
PS
Just a bit of information for readers of the forum who live on their own please have a carelink buzzer and wear it at all times and have a bag packed with clothes and other written instructions of important information should you get ill, I have just spent most of the evening with a very dear friend with pd after someone spotted him on the floor through the letter box lucky I have his keysafe number and we managed to get help and he is safe in hospital. I suspect he has an urine infection and is slightly confused because of lack of fluids but it could have been a lot worse had we not found him so soon.
Hi treadmill
Just a little information. The bottom line is that it is the PCT's decision as to how they deliver someone's Continuing Care package - they should consider the person and their family's needs and wishes when making a decision, but ultimately the PCT decides. If the person/family are unhappy with the decision made they can appeal/complain. And do remember that as a carer you are still entitled to your own carers assessment from social services - this could open up more avenues of support for you as well…
It's difficult to give more personal advice here - each case needs to be looked at individually and many things don't apply universally. So, do feel free to call the helpline and speak to the social care advisor as suggested by the other members here.
Cheers
Luis
Just a little information. The bottom line is that it is the PCT's decision as to how they deliver someone's Continuing Care package - they should consider the person and their family's needs and wishes when making a decision, but ultimately the PCT decides. If the person/family are unhappy with the decision made they can appeal/complain. And do remember that as a carer you are still entitled to your own carers assessment from social services - this could open up more avenues of support for you as well…
It's difficult to give more personal advice here - each case needs to be looked at individually and many things don't apply universally. So, do feel free to call the helpline and speak to the social care advisor as suggested by the other members here.
Cheers
Luis
Many thanks for posts. I agree with Luis, that it is the PCTs final word. They have been fairly good but I am always worried that they will cut back on the number of hours we have. The reason I was upset was that they felt that the carers would/should not be responsible for my house whilst I was away and made that an excuse for their concerns about my husbands wellbeing, and felt that a nursing home would be so much better. That is absolute rubbish, because I go out during the day leaving carers in charge all the time. Anyway they have had another meeting and have come back and said that they will allow me the monies it would cost to have 2 weeks respite, but because it costs more for an outside agency to do the care I may only be able to have 1 week. That is fine, at least I can go away for a few days now and sort out the situation at a later date. I was also told that they were going to pilot a scheme whereby monies for care would be given to me(social services already doing it)and this would allow me to 'tweak' my hours so that I could build up some time here and there and that would pay for night sleepovers. Very difficult, I will have to look into it very closely, before I make up my mind. I have such a good relationship with our carers I would not want them to loose out on their pay. As you will agree, we only want the best care for our families, but sometimes to do the job ourselves we do require a very little 'me' time, just to keep going.
I would be interested to know if anyone else has Continuing care on this money scheme, and how they feel it is working for them. Lyn
I would be interested to know if anyone else has Continuing care on this money scheme, and how they feel it is working for them. Lyn
Hello treadmill,
I do not know of the answers you need !
I am the main carer for my father - how we got round it was "we" moved into assisted living care.
We have our own flat (2 bedrooms) so in essence I live here with him.
The carers come in literally every 2 hours - Fluids/Toilet/Dinner.
Two carers get him up every morning then come in every 2 hours and call in during the night every 2 hours -so I am here when they come in to medicate/toiletetc..If he needs care between the two hours I do it or I say to them I will make the dinner.
I stay out of the way at a.m. as they shower/shave/brush teeth/make breakfast and dress.
I have my own flat which I go back to every so often,but basically now live with him but have lots of support for him.
ALWAYS knowing they come in and have access to the flat if I am not here,even though there are pull cords everywhere and a button around his neck.
I take him to all his appointments and to the cafe/pub /appointments.
Possess my own sets of keys - the only downside which is not one really - I am not allowed to use it as my address for post and all my male goes to my address.
We were not sure at first wether it would work but it does.
We were also allowed to keep his old cares from his warden controlled flat before we came here.
I also am not allowed to ask the carers to do any of my own washing/cleaning etc...
I do not know of the answers you need !
I am the main carer for my father - how we got round it was "we" moved into assisted living care.
We have our own flat (2 bedrooms) so in essence I live here with him.
The carers come in literally every 2 hours - Fluids/Toilet/Dinner.
Two carers get him up every morning then come in every 2 hours and call in during the night every 2 hours -so I am here when they come in to medicate/toiletetc..If he needs care between the two hours I do it or I say to them I will make the dinner.
I stay out of the way at a.m. as they shower/shave/brush teeth/make breakfast and dress.
I have my own flat which I go back to every so often,but basically now live with him but have lots of support for him.
ALWAYS knowing they come in and have access to the flat if I am not here,even though there are pull cords everywhere and a button around his neck.
I take him to all his appointments and to the cafe/pub /appointments.
Possess my own sets of keys - the only downside which is not one really - I am not allowed to use it as my address for post and all my male goes to my address.
We were not sure at first wether it would work but it does.
We were also allowed to keep his old cares from his warden controlled flat before we came here.
I also am not allowed to ask the carers to do any of my own washing/cleaning etc...
Hello Pingopenguin,
Your system sounds ideal I have never heard of it so it would be very useful if you could send all the information or your story to the national parkinson's mag,
I am sure many members would be very interested if it is available nationwide and perhaps you could tell us how you went about it in the first place.
best wishes have a lovley day
vivian
Your system sounds ideal I have never heard of it so it would be very useful if you could send all the information or your story to the national parkinson's mag,
I am sure many members would be very interested if it is available nationwide and perhaps you could tell us how you went about it in the first place.
best wishes have a lovley day
vivian