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In desperate need of advice

Smanning

Registered User
Jun 27, 2017
3
My father was diagnosed with vascular dementia mixed alzhemiers two years ago, but 6 weeks ago was also diagnosed with lung cancer at stage 3b, prognoses was a only months.
Dad lives with my 18 year old sister who is caring for him as best as she can. Because of the cancer his dementia has progressed greatly.
I feel greatly let down by all proffessionals involved with my dads care.
** ************ refuse to help because dad is not bed ridden and is abusive, the mental health team state all they can do is medicate him, which he alteady has, and social services have only provided 2 carers a day for 45mins.
The cancer is not the problem here its his dementia, he can not be left alone. He climbs over fences and out of windows to esscape for hours at a time. Defecates in his hands and urinates every where. My sister is at her wits ends, and the only support she is entitled to is a mere 2 45 mins slots a day.
My dad has quite litually weeks to live and thats all the help we are allowed, surely this is wrong.
There hasnt even been a referal to the occupational thetapist, to make adjustments to the home such as locks on the front door and windows.
 
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Aisling

Registered User
Dec 5, 2015
1,805
Ireland
My father was diagnosed with vascular dementia mixed alzhemiers two years ago, but 6 weeks ago was also diagnosed with lung cancer at stage 3b, prognoses was a only months.
Dad lives with my 18 year old sister who is caring for him as best as she can. Because of the cancer his dementia has progressed greatly.
I feel greatly let down by all proffessionals involved with my dads care.
** ************ refuse to help because dad is not bed ridden and is abusive, the mental health team state all they can do is medicate him, which he alteady has, and social services have only provided 2 carers a day for 45mins.
The cancer is not the problem here its his dementia, he can not be left alone. He climbs over fences and out of windows to esscape for hours at a time. Defecates in his hands and urinates every where. My sister is at her wits ends, and the only support she is entitled to is a mere 2 45 mins slots a day.
My dad has quite litually weeks to live and thats all the help we are allowed, surely this is wrong.
There hasnt even been a referal to the occupational thetapist, to make adjustments to the home such as locks on the front door and windows.
I don't know what to say to you but could not ignore your post. Yes the " help" you are receiving is totally wrong, actually amoral in my opinion. People should be supported. Your lovely sister and you having to deal with this agony. And your poor dad.

Just some random ideas.. Get in touch again with SS. Talk to GP. Write down facts and give copies to all professionals. Your Dad has Dementia and cancer. Point out how vulnerable he is to SS and also the strain they are keeping you and your sister under. An eighteen year old girl. Have you access to an admiral nurse? Hospice supports people with cancer in Ireland. I can't remember who supports people in England. My brother died from cancer in England.

I wonder if your Dad has any infections that need to be investigated in hospital? G P again hoping you have a good GP.

Why oh why are seriously ill people treated like this?
 
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DMac

Registered User
Jul 18, 2015
535
Surrey, UK
It sounds like your poor dad has somehow slipped between the gaps in the healthcare and social care networks. This is appalling and simply should not happen.

Have you or your sister tried calling the police when he escapes or becomes aggressive? I understand they can be very helpful in these situations. Taking this action could result in your dad being sectioned, which might seem scary, but would ensure your dad gets back into 'the system' to get the care he so desperately needs, and that your sister is kept safe.

If as you say your dad is at end-of-life stage, I understand he should be entitled to a fast-track continuing health care (CHC) assessment, which should ensure funding is provided for ALL of his care needs.

At this moment though, it is most important that your sister is kept safe from him, as in his confused state of mind he could injure her. Tell her to make sure she has a fully-charged phone with her at all times, and to call 999 if he kicks off. Also, make sure she has a bolt-hole somewhere in the house, where she can barricade herself in if she needs to.

I hope this helps. Please take care.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
9,252
Yorkshire
hello Smanning
welcome to TP
I too cannot believe that you and your poor dad are not getting much more support.
I agree with Aisling; go back to your Local Authority Adult Services and make a great nuisance of yourself. Make it clear to them that you know tnat the LA have the ' duty of care' for your dad and you will hold them responsible if anything happens to him or to your sister - he is not her responsibility. Tell them that due to the behaviours because of his dementia and his cancer diagnosis he is a ' vulnerable adult' and he is 'at risk' - those are buzz phrases to use
if possible, write all this out and send copies to everyone you can think of eg his GP, consultants, Social Services, even say you think the media my well be interested in this situation - ask them all what would be put in place if your dad was completely on his own - say your sister cannot cope and will walk out unless they get help - say you think a best interests meeting should be called as you don't believe the LA are acting in your dad's best interests, leaving him at home to fend for himself with only a teenager to watch out for him
ask your GP for a referral to Marie Curie nurses, the local hospice, Admiral nurses
do you believe your dad would be better off in 24 hour care? if so tell the LA that this is what you want, an emergency placement in a nursing home as you have been told that your dad has only months to live - mention that you want the checklist for CHC funding done, this is to consider full funding for your dad's care
have you Powers of Attorney, because if you have and your dad has savings over £23250 he would be considered as self funding (if not eligible for CHC) and you yourselves could move him into a care home, though the LA should really be helping you to find somewhere suitable
maybe see if your local AgeuUK can help you
and phone the AS helpline as the operators have a lot of knowledge and contacts
0300 222 1122 or by email at helpline@alzheimers.org.uk.
•Helpline opening hours:
•Monday to Wednesday 9am – 8pm
•Thursday and Friday 9am – 5pm
•Saturday and Sunday 10am – 4pm
sorry to be barking orders at you, I am trying to think of any ways to get help
hopefully other members will have suggestions for you too
keep posting with anything that's on your mind
best wishes

PS the more I think, the angrier I am that your sister is being put in this unsafe position - maybe you do need to take drastic action to get your dad the care he needs; might she go to the GP and say she is going to walk out as she just cannot deal with your dad, so he will be on his own in the house - sometimes only a crisis gets the system to step up - the longer the 2 of you try to cope, the longer you will be left to cope - horrible for you all
 
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Smanning

Registered User
Jun 27, 2017
3
Pushed from pillar to post

My father was diagnosed with vascular dementia mixed alzhemiers two years ago, but 6 weeks ago was also diagnosed with lung cancer at stage 3b, prognoses was a only months.
Dad lives with my 18 year old sister who is caring for him as best as she can. Because of the cancer his dementia has progressed greatly.
I feel greatly let down by all proffessionals involved with my dads care.
** ************ refuse to help because dad is not bed ridden and is abusive, the mental health team state all they can do is medicate him, which he alteady has, and social services have only provided 2 carers a day for 45mins.
The cancer is not the problem here its his dementia, he can not be left alone. He climbs over fences and out of windows to esscape for hours at a time. Defecates in his hands and urinates every where. My sister is at her wits ends, and the only support she is entitled to is a mere 2 45 mins slots a day.
My dad has quite litually weeks to live and thats all the help we are allowed, surely this is wrong.
There hasnt even been a referal to the occupational thetapist, to make adjustments to the home such as locks on the front door and windows.
Dads social worker would not start gast tracking of continue health care until an exact prognoses was given, which all his consultants could only suggest months. This how ever has not been good enough for SS as they have spent 3 weeks over what and who to contact next.
SS have been in contact with GP via Email, which after 3 weeks still have not had any response, but SS has been so slow to send any more correspondence to chase a response.
I am having to phone GP myself in order to arrange an assessment to be done by a district nurse, which i am still a waiting a date for. Dad refuses to eat so is fadeing away before my very eyes.
All we are asking for is perhaps some one to go to dad at home and take him for a walk or do a puzzle for an hour at lunch and tea time perhaps. Is that too much to ask for.
We dont want dad to be hospitalized. Consultants say he will pass in his sleep so we would like him to die at home.
Every professional I have speak to pass me back and forth denying any responsibility in the care for dad.
Police are called about twice a week including helicopters. Last incident was 2 days ago, when dad had to be collected from police station after being caught trying to break into some ones car.
 
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Oh Knickers

Registered User
Nov 19, 2016
500
Smanning,

Time to get your sister out of there as is is simply no longer safe. Then call SS (Social Services), the GP and explain it was done for HER safety and you dad is now on his own and extremely vulnerable. Insist on taking names and contact numbers. It starts looking legal. State that anything that now happens to your dad will be on their heads. This is astonishing and ridiculous.

There are times when a crisis needs to be provoked.

Also, talk with the following organisations for guidance. They will have good local knowledge and will be able to guide you. Scroll down the page when the screen comes up and put in your dad's postcode.

Alzheimers Society
https://www.alzheimers.org.uk/

Age UK
http://www.ageuk.org.uk/

Best of luck and please let us know how things pan out.
 

AlsoConfused

Registered User
Sep 17, 2010
1,953
Would also suggest making immediate contact with your MP - show him / her this thread and insist on getting help. A good MP can do wonders in geeing up action from others!

Sadly, not all MPs are effective or interested.
 

Smanning

Registered User
Jun 27, 2017
3
DS1500 form

Can any one answer with a 100% knowledge that the answer is correct. Is the DS1500 form for the terminally ill with not long to live who are applying for AA, so the application can be sped up. And the fast tracking continue health care assessment, a medical person is to assess patient so as to speed up the application for what care is needed and funding.
I am under the impression that the DS1500 for the AA special rules is the very same fast tracking CHC assesment for nhs funding of the care. Can any clarify this for me plz?
Any info is greatly appreciated.
 

Havemercy

Registered User
Oct 8, 2012
135
Can any one answer with a 100% knowledge that the answer is correct. Is the DS1500 form for the terminally ill with not long to live who are applying for AA, so the application can be sped up. And the fast tracking continue health care assessment, a medical person is to assess patient so as to speed up the application for what care is needed and funding.
I am under the impression that the DS1500 for the AA special rules is the very same fast tracking CHC assesment for nhs funding of the care. Can any clarify this for me plz?
Any info is greatly appreciated.
Completely different things:-

The DS1500 form is completed by person''s medical practitioner (probably GP if person is at home). The GP will complete the form saying that the patient has a rapidly deteriorating condition that is entering a terminal phases. The doctor may put an expected time scale . This form is then sent with the Attendance Allowance application to the Department of Work and Pensions as an application under the "Special Rules". This is a benefit application.

The application for Fast Track funding is an application to the person's CCG (Clinical Commissioning Group) which governs his GP. This is an application for care funding by the NHS either at home or in a nursing home. Again the GP will complete a form which is called the Prognostic Tool and the CCG (ie NHS) will approve or decline the application according to what they think of the written evidence on the Prognostic Tool. If the person is in hospital then a registrar or above will do the Tool.

Hope this helps. Good luck and best wishes. Maybe ask the District Nurse attached to GP surgery ad they are usually very 'au Fait with fast track funding things.
 
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Toony Oony

Registered User
Jun 21, 2016
577
This horrifies me. Your poor family and your poor Dad. He is being failed when he most needs medical care and support.

I'm afraid I cannot offer any help - only virtual hugs and prayers to your sister and yourself.

My Dad died of lung cancer, but as has been mentioned here, all sorts of things were put in place extremely rapidly to aid his condition, due to the speed with which this disease can act. This was a difficult time - but he did not have dementia as well. I cannot imagine what you and your sister must be going through.

Marie Curie/Macmillan nurses are good and get on to your MP too. I know you must be fraught but don't be afraid to use every trick in the book to take this to the highest level. Looks as though you need to fast track to the organ grinder now, as the monkeys are just doing what monkeys do! Also don't be afraid to be a ****** nuisance. If you don't want something to happen, say it and keep repeating it over and over. Similarly, a good phrase is 'So what are you going to do ......'. If the reply seems to be very little, then say again 'I asked you - what are you going to do' ....

It will be little consolation, but in the latter weeks of lung cancer, often strength and physical ability goes as oxygen to the lungs is diminished. This may curtail your Dad's physical activity - but I think a meeting between oncology and psych/mental health is desperately needed as from what you have said, your Dad may have issues with the oxygen masks; drain tubes and other paraphernalia that is required with end stage lung cancer.

This must be awful for you all - much love X
 

philamillan

Registered User
Feb 26, 2015
97
Hello Smanning.

Sorry you have been through so much.

Truthfully this cannot be sorted quickly in the community.

My advice is to take him to hospital and clarify if his deterioration could be because of spread of the cancer to the brain.

It will also ensure a comprehensive review with adequate support before discharge. Should he still be managed at home?

All the best.
 

Slugsta

Registered User
Aug 25, 2015
2,760
South coast of England
Hi and 'welcome' to TP. I am sorry you have come to us in such distressing circumstances.

I am appalled at the way your family is being treated. In fact, 'neglected' would seem to be a better word than 'treated' :mad:

I'm afraid your sister might have to step right back from your father's care in order to get anyone to take this situation seriously. What a way to treat someone at the end of their life! :mad: :mad:
 

Minniemee

Registered User
Jan 5, 2016
1
Advice

Hi I'm really sorry to hear of the strugggles you are facing as a healthcare professional I find it hard to read but unfortunately very familiar.
I am an Admiral nurse supporting families of those caring for someone with dementia I'm not sure where you live but please contact the National Helpline at Dementia UK who may be able to help: 0800 888 6678.
Also contact your GP who can fast track him for Palliative support in the Community.
Take care
 
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