Hi. I'm new on here and just after some support, shared experiences and advice. And, of course, I will offer the same to other if I can.
My mum has PD. She is 58. She was diagnosed about 12 years ago when she was a business woman and cared for my grandfather. Initially she had few symptoms but declined rapidly. About 7 years ago she moved into a bungalow and over time got more and more care to the point of 6 carers a day. I had a wet room fitted and adapted the home and furnishings.
Various drugs were tried to slow down her decline including intravenous drugs which caused more damage than good. She was even briefly considered for brain stimulation therapy.
In November 2010 mum was diagnosed itch lewy body dementia. The main symptom was hallucinations but cognitive problems increased. There were a few mishaps - drinking washing up liquid, getting lost etc. we were talking about care homes but getting not support form the sw who said the main aim was to keep her at home. I pushed for an assessment to see if he needed nursing or residential care with the idea if getting her resoure care whilst I went on holiday.
They arrived to do what I tought was the assessment but wasn't. They had a chat and decided mum wasn't safe at home. They said I had to care for her 24hr a day as she wasn't safe alone and there were no respite beds. ( I ave a newborn baby, no downstairs bedroom or bathroom..) after much discussion they owns her a respite bed for a week. I had 7 days to find a suitable care home. They said they couldn't offer any advice. I spent a week dragging my baby around care homes being told I needed nursing then didn't. Needed emi then didn't etc. many said thy wouldn't take under 60s. Some were horrific.
Eventually, the day before she was kicked ou of respite, I found somewhere. She has now been tere 4 weeks. She sets it. She as declined rapidly. She no longer speaks coherently or at an audible volume. She says she hates it and cries. She's had a fall and ended up in hospital for three days. The carers are lovely and I know she's in the right place. It's costing a small fortune and I just hope I win the lottery so I can keep her there ( even though she hates it!)
Mum talks regularly about dying. She has had enough. Her quality of life is awful. I hope that she deteriorates rapidly and the lewy oldies mean that she doesn't live life a horrendous life to old age. Parkinson's and lewy bodies are an evil disease. Big hugs xxx
Hi I am so sorry you have had to fight this battle seemingly by yourself. I support families with different needs. some complex but not life threatening and some,sadly,where families are in your situation. I see how hard it is for families to watch loved ones suffer and deteriorate. My thoughts are with you and hope you keep your strength.
Neenag xxx
Neenag xxx
Neenag - who do you work for? I have been offered no support. Mum has a sw but we rarely see her. The Parkinson's nurse is a bit more useful. She sees the consultant once every 18 months. I do feel like I'm just left to cope alone. And as for paying for care .....
I work for a care company and social services before that. I also worked with E.M.I patients and mental health and have had experience in palliative care. Sadly in my experience its those who shout loudest and longest that get help and even then it takes time. Have you been to see tour local MP to complain about the standard of care you have recieved.
neenag xxx
neenag xxx
hi iim,im ali ive been dx for 11 half years now,im 43 years old.im very sorry to here wot you and your mum have had to go through,big hugs to both of you,to me it looks like another cock up in the system im afraid,to be honest ive never been able to work it all out,for instance,my moms friend joyce her dad is 93 years old,and has bad health,he lived in a bunglow by him self for about 6 years after loosin his dear wife to cancer,joyce,his daughter has 7 severn childen who all cared for him as well as juggled around full time jobs,it got harder and harder,he finally had care in the home,and then went to a care home in newport,but they looked at one care home,lied it ,there was room for him and end of story,he likes it,everyone is happy.then you have my mum,she is very ill,and lives with my disabled brother,they both have care in the home,dad died in 2006,they tell mom she needs to go in a home,but she wont cus of me brother,he wonts to live with me,i carnt look after me self ,i have care meself,so she wont go in a home cus that means he goes in a home to seperate.then we have your story with your mum,iim,it just a merry go round with peoples lives,it goes from no beds to hatein wontin to be there and makin the family feel guilty,to some one who is content with were there loved one is.i feel for you and your mumimm,but i would say you have done everything you could of for her well bein,and she would no you have to,with her now wontin to give in,is very sad situation,and needs help from the correct people now ,seems to me she is getin depressed with everything thats gone on,i hate to say that to you but it seems true,there are people who can talk to your mom and help her through things,there is a helpline on puk who give good surport and guide people,may be this is a good idea for youself and your mum,good luck x
i just love alij... so kind and thoughtful..i know it takes time for u to write all that...
neenag xxx
neenag xxx
Hello llm,
I am so sorry to hear of your problems,sadly this is often the case and it is not until you have to deal with these situations that you realise how difficult it is, people have no idea generally the whole system is a mess that needs sorting out. Alj is right as always once you get through the maze and finally get into the right path it gets a lot easier, the big problem is getting there.
As regards to the funding she may be entitled to continuing health care funded by the national health service, she would have to be assessed for this, you need to speak to a social worker or someone at the hospital, this should all be discussed before discharge. If she doesn't qualify and you could sell her bungalow you can get an (immediate needs policy) that would cover her costs with a 5% yearly increase you can find out more about these from the Nursing Home Fees company based in Oxford they have been in practice/business for many years look it up on the web site, there are other like this just be careful. I am afraid all this is quite time consuming and the help from the PD support worker will help you a great deal as they are used to the maze.
On a personal note your Mum knows how much you care and what you are trying to do, but you must also look after yourself and your baby, life like this is so emotional and a constant roller coaster, it is so easy to forget you too need support.
I hope everything gets a bit easier soon for you,
my very best wishes
vivian
I am so sorry to hear of your problems,sadly this is often the case and it is not until you have to deal with these situations that you realise how difficult it is, people have no idea generally the whole system is a mess that needs sorting out. Alj is right as always once you get through the maze and finally get into the right path it gets a lot easier, the big problem is getting there.
As regards to the funding she may be entitled to continuing health care funded by the national health service, she would have to be assessed for this, you need to speak to a social worker or someone at the hospital, this should all be discussed before discharge. If she doesn't qualify and you could sell her bungalow you can get an (immediate needs policy) that would cover her costs with a 5% yearly increase you can find out more about these from the Nursing Home Fees company based in Oxford they have been in practice/business for many years look it up on the web site, there are other like this just be careful. I am afraid all this is quite time consuming and the help from the PD support worker will help you a great deal as they are used to the maze.
On a personal note your Mum knows how much you care and what you are trying to do, but you must also look after yourself and your baby, life like this is so emotional and a constant roller coaster, it is so easy to forget you too need support.
I hope everything gets a bit easier soon for you,
my very best wishes
vivian
Hi Lim,
Just read your post and wish you all the best. I wish I could offer more. Your mum is very lucky to have such a caring daughter. Look after yourself and that baby. xx
Just read your post and wish you all the best. I wish I could offer more. Your mum is very lucky to have such a caring daughter. Look after yourself and that baby. xx