Please can someone tell me what to do

[yorkshirerosie]

Mum started on Risperidone 8 weeks ago and I thought we had a break through. Unfortunately the screaming/shouting/banging episodes have started again, everyday for the last week lasting 1-2 hours. Mums neighbours have had enough I think but I don't know what to do. Mum doesn't know she is doing it and cannot think why she might be doing it. She says she is not in any kind of pain . The confusion seems to have got much worse over the last 2 weeks and she is struggling to string a sentence together or one that makes sense at least and she has completely forgotten my Dads side of the family. When I mention my Dad ( he passed away 9 years ago) she doesn't know who I am talking about , I have to call him by his first name.
Mum is also getting angry when I say things like we need to take your shoes off as your ankles are swelling up and this week she got really angry with me as she was taken to the doctors by her carer for a water sample to be taken which she refused to do. She says she isn't happy that she is getting told what to do and when and what not to do. It's like another person , her face changes and she looks quite vacant and scary.
I was told before mum started on Risperidone that if it didn't work then there was nothing else that could be done.
Ideally I would love to have a live in carer but they are so expensive and I have broached the subject of mum going to live in a home but she gets angry and says she will run away.
What do I do? Neither myself nor my brother have room for her to live at our houses, not that it would work anyway as I have 3 children.
Please can someone advise me how to proceed, I don't know what questions to ask of whom or what answers there could be and I'm struggling to cope at the moment.

 

[Oxy]

When the useless memory service send an appointment they always include a crisis telephone number. You could talk to them-supposed to have clinical knowledge. Admiral nurse helpline is useful as manned by trained nurses clued up in dementia and of course Alzheimers soc helpline. Have you had an assessment from LA and your mum needs one too. Ring them, make noise and make it clear you are struggling with how things are.
I do hope that one of these will come forth with help and advice-even better if some advice gets duplicated increasing your confidence in it being especially useful.

 

[yorkshirerosie]

When the useless memory service send an appointment they always include a crisis telephone number. You could talk to them-supposed to have clinical knowledge. Admiral nurse helpline is useful as manned by trained nurses clued up in dementia and of course Alzheimers soc helpline. Have you had an assessment from LA and your mum needs one too. Ring them, make noise and make it clear you are struggling with how things are.
I do hope that one of these will come forth with help and advice-even better if some advice gets duplicated increasing your confidence in it being especially useful.

What's LA?

 

[jeany123]

What's LA?

Local Authority

 

[Oxy]

LÀ is local authority ie your council the cared for pays community charge to.

 

[lin1]

Hello .
I am sorry to hear about your Mum. I too was wondering if it could be a UTI . I know it's likely to be difficult to get a sample of urine but it may be easier to get the sample at home , then take it to the surgery.

I think you should get back to the person who prescribed the Risperidone asap , though I am no medic I am pretty sure their are other meds that may help, others here will know better than I.

 

[flossielime]

I am sorry about your situation. i do think a care home is needed - i know easier said then done. NO ONE wants to go into a home in my opinion - so she is obviously going to say she does not want to go. She will not run away as the places are secure.

That said it is easy to be objective when not emotionally involved. I know my dad needs a care home but I am getting myself in debt - paying carers at the moment to try and delay as long as possible.

 

[ddurbridge74]

When the useless memory service send an appointment they always include a crisis telephone number. You could talk to them-supposed to have clinical knowledge. Admiral nurse helpline is useful as manned by trained nurses clued up in dementia and of course Alzheimers soc helpline. Have you had an assessment from LA and your mum needs one too. Ring them, make noise and make it clear you are struggling with how things are.
I do hope that one of these will come forth with help and advice-even better if some advice gets duplicated increasing your confidence in it being especially useful.

we had a social worker here about helping us with our dad. i could have shot her. not fit to be in the profession.

 

[Pickles53]

I am sorry about your situation. i do think a care home is needed - i know easier said then done. NO ONE wants to go into a home in my opinion - so she is obviously going to say she does not want to go. She will not run away as the places are secure.

That said it is easy to be objective when not emotionally involved. I know my dad needs a care home but I am getting myself in debt - paying carers at the moment to try and delay as long as possible.

Not sure why you are paying for the carers; if your Dad does not have sufficient funds you do need to get an assessment by LA as they would then help financially. Sorry if I have missed something here.

 

[wilf]

Mum started on Risperidone 8 weeks ago and I thought we had a break through. Unfortunately the screaming/shouting/banging episodes have started again, everyday for the last week lasting 1-2 hours. Mums neighbours have had enough I think but I don't know what to do. Mum doesn't know she is doing it and cannot think why she might be doing it. She says she is not in any kind of pain . The confusion seems to have got much worse over the last 2 weeks and she is struggling to string a sentence together or one that makes sense at least and she has completely forgotten my Dads side of the family. When I mention my Dad ( he passed away 9 years ago) she doesn't know who I am talking about , I have to call him by his first name.
Mum is also getting angry when I say things like we need to take your shoes off as your ankles are swelling up and this week she got really angry with me as she was taken to the doctors by her carer for a water sample to be taken which she refused to do. She says she isn't happy that she is getting told what to do and when and what not to do. It's like another person , her face changes and she looks quite vacant and scary.
I was told before mum started on Risperidone that if it didn't work then there was nothing else that could be done.
Ideally I would love to have a live in carer but they are so expensive and I have broached the subject of mum going to live in a home but she gets angry and says she will run away.
What do I do? Neither myself nor my brother have room for her to live at our houses, not that it would work anyway as I have 3 children.
Please can someone advise me how to proceed, I don't know what questions to ask of whom or what answers there could be and I'm struggling to cope at the moment.

Well Yorkshorerosie you have my upmost sympathy. My mums exactly the same and I have been told that Risperidone will help but only for a couple on months so I have declined it. I cant afford a live in carer either but I have applied for continual healthcare and am on the verge of having 24/7 care provided in Mums own home. As this is funded by NHS it is free and is not means tested. Your first step is to have your Mums G.P. refer her for an assessment to the memory clinic. Then contact social services to ask for a meeting with them and social services to complete a chc check list. This will trigger a multi disciplinary meeting to complete a decision support tool (D.S.T.). The process is a minefield but if you wish to persue it dont hesitate to contact me and I will guide you best I can. Keep smiling, keep loving and remember you are not alone. Wilf.

 

[yorkshirerosie]

Thanks Wilf, mum currently has an independent carer visit her am and pm. Mum also has adult placement twice a week and visits a day care centre once a week. We pay for all that despite mums funds being below £14k. we have been visited by a social worker and it was them who initially arranged the day care.
Is it the social worker who I need to speak to about the continual care ? I've never heard of it but it sounds just the thing we need. Mum is under a consultant at the memory clinic although I haven't found them much uses apart from prescribing the medication.
I have a meeting with someone from the finance dept and the social worker on 14th November so can you advise me what the best course of action would be before then?
Thanks so much

 

[wilf]

Thanks Wilf, mum currently has an independent carer visit her am and pm. Mum also has adult placement twice a week and visits a day care centre once a week. We pay for all that despite mums funds being below £14k. we have been visited by a social worker and it was them who initially arranged the day care.
Is it the social worker who I need to speak to about the continual care ? I've never heard of it but it sounds just the thing we need. Mum is under a consultant at the memory clinic although I haven't found them much uses apart from prescribing the medication.
I have a meeting with someone from the finance dept and the social worker on 14th November so can you advise me what the best course of action would be before then?
Thanks so much

Rosie, it is the social worker who should apply for chc. You can download the initial check list (google nhs continuing healthcare check list November 2012 revised). There are 10 sections (called domains) scored A, B, or C. You need to score:
1) 2 or more domains selected A or
2) 5 or more domains selected B, or 1 A and 4 in B
Read through the check list and if you meet the criteria ask your social worker to complete the check list with you (I did my Mums with the social worker and the Community Psychiatric Nurse). Presuming you meet the criteria after completing the check list the social worker will arrange a multi discipline meeting (at my meeting there was me, social worker, C.P.N., Mums carer, carers manager and a member of the C.H.C team). At this meeting they will discuss in detail your answers on the initial check list (takes about 3 hours). The chc team member will chair the meeting and complete a decision support tool (D.S.T.) You can also download the D.S.T. The scoring for the 10 domains on the D.S.T. is priority, severe, high, moderate and low. You need to score 2 x severes for the chc team member to apply for C.H.C.
I suggest you read the check list and if you think you can prove to the social worker and/or C.P.N. that you meet the criteria, then arrange a meeting to complete it. Get back in touch with me before you meet to complete it and I will give you some tips to get higher scores. Good Luck. Wilf.

 

[Thislife]

There are other medications to help with combative behavior. I recommend researching online. You said she gets angry when you mention your dad or his side of the family, Stop, it only reminds her that her memory is failing. It is far easier to enter her world than make her remember yours. I can not seem to express this enough. If she calls you by her mother's or sisters name just say yes what can I help you with, if she aso remember when we were 9 and went to that swim hole? Just say I remember a little who else was there and let her tell the story . Your life a d hers will be much easier this way.
Talk to the doctor maybe an anti anxiety instead of a antipsychotic like xanax or Ativan or buspar will help
.

 

[yorkshirerosie]

There are other medications to help with combative behavior. I recommend researching online. You said she gets angry when you mention your dad or his side of the family, Stop, it only reminds her that her memory is failing. It is far easier to enter her world than make her remember yours. I can not seem to express this enough. If she calls you by her mother's or sisters name just say yes what can I help you with, if she aso remember when we were 9 and went to that swim hole? Just say I remember a little who else was there and let her tell the story . Your life a d hers will be much easier this way.
Talk to the doctor maybe an anti anxiety instead of a antipsychotic like xanax or Ativan or buspar will help
.

The memory clinic have already told me there is nothing else

 

[Jessbow]

Its a GP issue, not the memory clinic.

are these out bursts at a regular time- always evening perhaps? or random?
Is there a pattern to them?

What does she shout about? is it always the same thing?
What is the trigger?

 

[Nebiroth]

The memory clinic have already told me there is nothing else

I find that extraordinary. First, risperidone is an older antipsychotic - it is still used because it is effective and can have a more rapid onset of the beneficial effects that other drugs. However, generally speaking, doctors tend to prescribe one of the more modern antipsychotics for persons with dementia. They are, for example, regarded as less likely to cause side-effects.

Second, finding an effective antipsychotic is often a process of trial and error, to find the most suitable drug at the most suitable dose. This is because patients have such an individual reaction to them, so it can literally be a case of trial and error - which can also be lengthy because benefits from such drugs can take some time to become apparent, and this can also be a gradual process.

I find it incredible that any doctor or hospital unit would simply see a patient once, prescribe one drug at one dosage and then effectively shrug their shoulders and say "that's it" because...well...it isn't.

At the very least in my opinion they should be doing a reassessment, and if necessary, adjusting either the medication or the dosage.

All patients can experience changes in their conditions over time and this often requires a change in medication regime. Of course, sadly there are illnesses where literally no more treatment options are available.

But the sort of thing you descrive doesn;t as far as I know fit into that category. Espescially after only one consultation and prescription!

As always your mum's GP is the primary contact. Dementia and the sort of complications your describe are really beyond the realm of GP disagnosis and treatment, but the GP can always make a referal to a consultant specialist.

And, in my opinion at least, should be doing so!

My dad had all sorts of terrible problems but we were never written off! Thankfuly our Gpo is very pro-active and worth his weight in gold, but we had many referals to consultants and changes in medication over the years.

 

[count2ten]

There are other medications to help with combative behavior. I recommend researching online. You said she gets angry when you mention your dad or his side of the family, Stop, it only reminds her that her memory is failing. It is far easier to enter her world than make her remember yours. I can not seem to express this enough. If she calls you by her mother's or sisters name just say yes what can I help you with, if she aso remember when we were 9 and went to that swim hole? Just say I remember a little who else was there and let her tell the story . Your life a d hers will be much easier this way.
Talk to the doctor maybe an anti anxiety instead of a antipsychotic like xanax or Ativan or buspar will help
.

This is the first time anyone has mentioned the idea of an anti anxiety instead of anti psychotic and I'm think of mentioning this to the cpn next time I see him. They have just prescribed Risperidone (sp?) to my mother (vascular dementia with delusions and hallucinations - we are convinced this is LB dementia but doctor dismisses this). I just don't like her having all these chemicals - the last antipsychotic prescribed made her much worse, her memory and cognition plummeted within a couple of months - I took her off the drugs and she "woke up" a bit but her s.t. memory is now no more than 5 minutes (the doctor says there are no long terms effects from these drugs , but how can they be certain?). Maybe we should all request a continuing health care assessment - one of the domains is behaviour management, which puts most of our cared-for in with a good chance. And that would really cause a tidal wave for the government to have to do something about!