Hello all. I am at my wits end with my mum's situation and would appreciate your thoughts.
She was dx in 2008 and doing well on Ropinirole and Cocareldopa but started to hallucinate and get a bit confused around Christmas time - I wonder now if anxiety brought all this on as she got better with more support from me but worse again at Easter after the Flu. She was prescribed Aricept in May - not sure we really had enough time to realise the effects of this - when she had a nasty fall and was taken into a Care home (mid June) on a temp basis (bit complicated how this came about but Norovirus in hospital and I was persuaded to make my own arrangements after the fall).She hates being in care - my mum is very outgoing and independant.
A week or so later she turned into a psychotic nightmare - hallucinating, paranoid, confused, talking rubbish - a total mental breakdown in my view. Only elderly people don't have breakdowns, they have dementia, right?! I should add that in her younger years she did struggle with anxiety and depression. Her Parkinsons Consultant initially prescribed Quetiapine but this didn't help, a psychiatric consultant then took her off this and prescribed Risperadone. 3 weeks later back to the Parkinsons expert who took her off Ropinirole in phases (starting a week ago today) and we are starting to see some improvement but it's all too late - the care home have decided they cannot cope with her (not having mental health expertise) and want her out.
I would like more time for things to settle down but am being forced into finding another dreaded care home, possibly for secure dementia patients - I feel she could recover if we get the meds right and the anxiety treated, am I being over optimistic? she is only early 70's, I can't look after her myself due to kids, work and house too small. She just wants to go home but just isn't up to it yet. Help!
Hi Mungo
I'm so sorry to hear about your Mum's situation. I really feel for you and your predicament in trying to do the right thing for her.
My husband has suffered a similar pattern to your mum but I found that the CPN (community psychiatric nurse) was the key to getting the right treatment. O/h was admitted to a dementia assessment ward (NHS) where they sorted out medication and management and he is now (again with the help of the CPN) in a nursing home which is equipped to meet his needs.
If she doesn't have a CPN, ask the psychiatrist about this. And/or get a social worker on board. Try the PUK helpline (number at the top of the page, left hand side).
There is help out there - unfortunately it is sometimes difficult to find out what is available and then to access it. And it seems to vary so much depending on what area you are in.
I am sure you will get lots of advice on here though. They are a great bunch of people.
Very best of luck in finding the right care for your Mum.
Worrals
I'm so sorry to hear about your Mum's situation. I really feel for you and your predicament in trying to do the right thing for her.
My husband has suffered a similar pattern to your mum but I found that the CPN (community psychiatric nurse) was the key to getting the right treatment. O/h was admitted to a dementia assessment ward (NHS) where they sorted out medication and management and he is now (again with the help of the CPN) in a nursing home which is equipped to meet his needs.
If she doesn't have a CPN, ask the psychiatrist about this. And/or get a social worker on board. Try the PUK helpline (number at the top of the page, left hand side).
There is help out there - unfortunately it is sometimes difficult to find out what is available and then to access it. And it seems to vary so much depending on what area you are in.
I am sure you will get lots of advice on here though. They are a great bunch of people.
Very best of luck in finding the right care for your Mum.
Worrals
hiya mungo welcome to the forum,im ali been dx for 11 half years and im 43 years old.im very sorry to here wot happin to your mom,it sounds like a big struggle for your self to,and your poor mom some were she dont wont to be carnt be helping her anxierty problems at all.i think worrals is rite wot is in the post above about the nurse to assess your mom.my mom has been told she needs to go in to care but wont leave the family home cus of memories she got,she has care at home but its not enough.it does get you down trying and trying to get the correct health care to help your loved ones.may be if you had a chat with a expericent member of puk helpline they will be able to guide you were you can get some help for your mom.good luck mungo,sorry i carnt help much more but i wish you both luck,please keep in touch.x
Dear Mungo,
Welcome to the forum, I am so sorry your mum is having these problems, did she have any mental problems before they started changing the drugs?
The reason I ask is that my husband had paranoia and psychosis when he first went into a nursing home and then it was made worse by the nurses giving him his apomorphine without diluting it with enough saline hence he ended up in a mental health unit and had really bad treatment. I couldn't find a suitable home for him and requested that he come home with 24 hour care, which we had for the next two years before we really couldn't cope with 80 different carer's its just too many changes and his health deteriorated as well in the end he became to challenging for me. The mental health consultant didn't really want me to have him home but his PD consultant new me very well and persuaded her to let me try. They kept a bed open for him for three weeks expecting us to say we couldn't cope but once I got him home and got the medication running to time he was fine, they discharged him from the mental health team within weeks.
I am not saying this is the same for you but if you feel that you need a little more time to see if she settles with good support and the right medication I would voice your thoughts with the doctors and social workers, and has been said already she could have the support of the cpn as well, it all depends on where you feel you are at, in this path of managing PD.
I hope that gives you some idea's, if you get in touch with other people in the local branch they will be able to tell you which nursing homes are good and ones to avoid in your area.
best wishes
vivian
Welcome to the forum, I am so sorry your mum is having these problems, did she have any mental problems before they started changing the drugs?
The reason I ask is that my husband had paranoia and psychosis when he first went into a nursing home and then it was made worse by the nurses giving him his apomorphine without diluting it with enough saline hence he ended up in a mental health unit and had really bad treatment. I couldn't find a suitable home for him and requested that he come home with 24 hour care, which we had for the next two years before we really couldn't cope with 80 different carer's its just too many changes and his health deteriorated as well in the end he became to challenging for me. The mental health consultant didn't really want me to have him home but his PD consultant new me very well and persuaded her to let me try. They kept a bed open for him for three weeks expecting us to say we couldn't cope but once I got him home and got the medication running to time he was fine, they discharged him from the mental health team within weeks.
I am not saying this is the same for you but if you feel that you need a little more time to see if she settles with good support and the right medication I would voice your thoughts with the doctors and social workers, and has been said already she could have the support of the cpn as well, it all depends on where you feel you are at, in this path of managing PD.
I hope that gives you some idea's, if you get in touch with other people in the local branch they will be able to tell you which nursing homes are good and ones to avoid in your area.
best wishes
vivian
Thank you all so much for your kind words of support.
Now off the Ropinirole, my mum has her head back and most of the madness has stopped. I don't think it is a drug that mixes well with trauma and anxiety. However you can really tell she has PD now.
Like you Vivian, I cannot find a care home to take her based on her recent record! She wants to go home anyway so I am trying to organise 24 hour care but could probably only afford it for a few weeks/months at which point I am hoping on reviewed meds she will be better and we could scale it back - if not we will have to look at selling the family home and Residential Care again.
Now off the Ropinirole, my mum has her head back and most of the madness has stopped. I don't think it is a drug that mixes well with trauma and anxiety. However you can really tell she has PD now.
Like you Vivian, I cannot find a care home to take her based on her recent record! She wants to go home anyway so I am trying to organise 24 hour care but could probably only afford it for a few weeks/months at which point I am hoping on reviewed meds she will be better and we could scale it back - if not we will have to look at selling the family home and Residential Care again.