Becoming a Carer, URGENT!

[Olivia_1810]

Not sure how to go about this but here’s my attempt.

My father is 52 years old with Dementia as of 6 or potentially 7 years ago, sadly, he is in a care home. His illness was extremely sudden and being only 14 years old at the time I had little authority or understanding. However, I am older and wiser, branching into the world of care myself. Over the time he has been there the care has gradually declined with the typical influx of different Carers and management, recently I have noticed bruising and an more than usual agitated state, additionally, since new Carers have come he has been put back on anti depressants. My father no longer has speech nor any other way of communicating besides the odd facial expression or drastic behavioural changes when around particular Carers or desiring something (flinching or making loud noises). I have raised some concerns previously with the care home directly with no luck and now that there is currently no management I’m unsure who to turn to. Nevertheless, I am considering becoming his carer as I have the background and as many do, I love my dad and do not want the number of years he hasn’t left with me to be an ordeal. However, being 21 years old who has just freshly left university, I have little to offer in terms of a lifestyle if I do take him from the care home. More so, his mother still being alive has taken the role of ‘power of attorney’ but has agreed to sign it over when she is near her death bed (not far). Anyway, I want to know what resources or advice is out there for someone who does not have a house or flat suitable for someone with dementia, has no earnings for this and is young. Another factor may be no car. I know this may sound ridiculous and don’t expect the government to suddenly provide a place suitable for him that I also can live in to be his carer, wages for both myself and my dad to live (note, I would not be able to work part time as he has a 24hour one to one carer and I’d have to provide the same) more so, any sort of transport or training to be more suited if necessary. I’m at a lost and can’t stop thinking about all the things wrong with where he is, the struggles to move him and figuring out if a new place is caring correctly, worse or the same as the prior, also, wanting to so badly take him myself but don’t even know where to begin. Any and all advice is welcome, also, feel free to ask more in-depth question if additional information is needed to give a detailed answer.

[bowlingbun]

Hi Olivia,

Welcome to the forum. You have a lot of responsibility for one so young.

I'm afraid that people with advanced dementia always need a TEAM of carers, to provide 24/7 care. Howeverf much you love dad, you cannot do this.

If you look at the Forum Index (go to Quick Links top left, next to the Carers UK logo) you will find a section for dementia sufferers and their carers. Read Pet's story about her husband, and why there was no alternative to residential in the end.


What you CAN do, is keep a diary of what is happening to dad, and contact the Care Quality Commission to raise your concerns. There may be other relatives also concerned about their loved ones being cared for there.

Take photos of any bruising with your phone for evidence.


Your grandmother CANNOT give you Power of Attorney, EVER! If she cannot act as Attorney, then you will need to go down the Court of Protection route.

Can I ask what is the matter with your gran, and how old she is?

Where is your mum? Do you have any other close relatives?

[Maxwell_1602]

Hi Olivia

My first reaction would be "don't do it"... Why don't you firstly put your strength and concerns into finding your Father a better care home. If the current one he is in is not bad but understaffed then voice your concerns and see if you get any results.
A friend of mine has her husband at home with carers 4 times a day but I can see she is struggling. you are so young and have your life ahead of you go out into the world and do some good and make some changes.
If your Father knows who you are then visit him as often as you can and let others do the day to day work.
Do think this through carefully before making rash decisions.

[Pet66]

Hello Olivia
I'm extremely sad to hear your Dad has such young onset dementia. I too have at times walked around my home, thinking of ways to get my husband home, for me to do the caring. IMPOSSIBLE. Unfair to him, first and foremost, unfair to my family and to me if I am honest. So, at your tender age, so special, as you will realise in many years to come, you should not consider having your dad at home for you to do the caring, even with help.
So the way forward. I'm appalled the care home has no manager. Someone should be at least deputising. Every home, needs some sort of manager/ supervisor for concerned relatives friends advocates to meet with. My husband had a very nasty bruised cheek some time ago, and my daughter's and myself were on the case promptly. Manager emailed, words like safeguarding used, insufficient information logged etc. An internal investigation made promptly,to a reasonably satisfactory outcome. Hubby gets very agitated at times with personal care and hates the hoist.
The care quality commission need to be informed that you and other visitors have no management to express concerns too, and that you are worried about the standard of care. I suggest you contact them, request they make an impromptu visit, making an appointment gives staff time to make all seem good ( I never understand that) .
Have you asked staff who they go to if they have concerns, who is doing the rota etc? It's an impossible situation for them to be honest which must have a detremental affect on the residents.
Can you find an advocate?
Please do not have your dad at home with you, especially without a great deal of thought.
My thoughts are very much with you.

[jenny lucas]

Oliva - my heartfelt sympathies. Such a dreadful dreadful situation for you....

I think the first and foremost consideration is this - is your poor dad SELF-FUNDING, ie, paying his OWN care home fees, or is his care being paid for by the State?

The answer means a lot to your choices now. IF he is paying his OWN care home fees (ie, out of HIS money, even if this is being administered by his own mother, your gran), then he has complete freedom to move to whichever other care home you would prefer for him. (My MIL has been in two dementia care homes and both have been LOVELY - there ARE good care homes around)

All you and your gran have to do is find a home with a vacancy who can take him, and give a month's notice to his current place, and move him in (a private ambulance for maybe £200 or so should move him, if absolutely necessary).

However, if he is paid for by the state, then is it by SS (Social Services) or the NHS? I think it would only be the NHS if early onset dementia is classed as an ILLNESS (elderly dementia is NOT). If the NHS is paying then I think it won't matter how much money he has.

If the SS are paying, then it automatically means your dad has less than £23000 in savings OR assets (eg, his own house/flat etc) (not yours or grans!).

IF he is being paid for by the state then you can STILL apply for him to change homes to a better one, as others are saying, log all your concerns about his treatment, and 'kick up a fuss'....the magic word in these circumstances is likely to be 'Safeguarding' - it's one of those 'legal terms' which gets social workers and doctors running around. They HAVE to ensure he is 'safe', so raising your concerns about bruises etc is a SAFEGUARDING issue.....

You are desperately young to be coping with this - you are in a good place here, as there is a LOT of expertise amongst members, and there are the team of experts at CUK itself to consult. Your gran is probably finding it all very very difficult as well, given her age, and that it is her son who is so afflicted. Do you have any other relatives? (Yes, where is your own mum in this??) (So sorry if she has died.....)

Don't panic TOO much about this - one of the 'mixed blessings' of dementia is that your dad will have very little memory now, so if something distresses him (like being moved) he truly won't remember it five minutes later.....

A final grim, but essential question - are the doctors giving any indication of how long he will likely live now? It's desperately sad to think it, but at some point, dementia does become a terminal condition. Knowing whether they think he has another year, two, five, ten....will guide your decisions now.

To my mind, the ideal would be to move him to a nicer care home where you and your gran can visit, and make the most of him, but NOT provide the gruelling and - I agree, impossible - level of care that someone with advancing dementia requires. My poor MIL could NEVER come home any more....

(Very well done on getting your degree - it must have been very hard in the circumstances - again, to your credit.)

Wishing you as well as can be in these VERY difficult circumstances - you are a brave your woman, with far more to cope with than you should have to, and that is
entirely to your credit.

[Olivia_1810]

Hi Olivia,

Welcome to the forum. You have a lot of responsibility for one so young.

I'm afraid that people with advanced dementia always need a TEAM of carers, to provide 24/7 care. Howeverf much you love dad, you cannot do this.

If you look at the Forum Index (go to Quick Links top left, next to the Carers UK logo) you will find a section for dementia sufferers and their carers. Read Pet's story about her husband, and why there was no alternative to residential in the end.


What you CAN do, is keep a diary of what is happening to dad, and contact the Care Quality Commission to raise your concerns. There may be other relatives also concerned about their loved ones being cared for there.

Take photos of any bruising with your phone for evidence.


Your grandmother CANNOT give you Power of Attorney, EVER! If she cannot act as Attorney, then you will need to go down the Court of Protection route.

Can I ask what is the matter with your gran, and how old she is?

Where is your mum? Do you have any other close relatives?

Thank you.

To confirm the specific type of dementia my DAD has ‘frontotemporal’, I cannot confirm the stage he is potentially at as the care home hasn’t provided such information, however, with some expertise someone here may be able to wavier where he is at with the following details; no speech what so ever, incontinent, placed on a soft foods and cold liquid only diet, teeth decaying, pale and drooping skin (not sure if this is in addition to the illness or the fact he’s lost a lot of weight), regularly has a cold, snotty nose, purple finger tips (asked about this and Carers were unsure why as the care home itself is not cold, given eye glasses (never had troubles with sight prior to this) has repetitive behaviour desires such as the need to grab and eat everything (to add, my dad was homeless for a period before this as he went missing and they say this is why he has that particular behaviour) walking in a pattern constantly and if still has to tap or bang on something. A few more may be added but all I can think of for now.

I recorded some evidence as of recent, however, up until this point have nothing but what I can say verbally. I guessed I forced myself to be naive so it wouldn’t impacted as much as it already does, I love my dad and was my best friend before this happened. So you could understand the need to think it’s something less sinister when visiting.

I don’t understand what nor how the whole power of attorney works, I have just been told a few years back that due to her next of kin involvement whatever power she now has will be handed to me. Not sure what court of protection is and hearing the word court just sounds expensive, which I have no means to go towards.

My Nan is like many elderly, old, has had numerous cancers and suffers from many mobility and general health concerns. She is within her 70s now so it is to be expected.

My mother did not marry my father, although having been together shy of 20 years, it’s confusing. However, not important right now. Due to this she obviously cannot make any decisions nor be of an authority and because of this she has always taken the back seat and somehow allowed her youngest child (I have one older brother who is not coping well with this and generally life itself), so with regards to home life. No one can or will help me.

Any relatives are not in contact or do not offer help, my mother’s side are taking the same stance and my fathers side have an extremely abuse, neglectful and sad childhood so all siblings are pratically missing and his father died an hateful man years ago.

I have filled a complaint out on the CQC website and contacted an individual working there via email for more details, yet to hear back.

Please feel free to ask more questions or provide more details! At the moment this is all I have with regards to gaining understanding.

[Olivia_1810]

Hello Olivia
I'm extremely sad to hear your Dad has such young onset dementia. I too have at times walked around my home, thinking of ways to get my husband home, for me to do the caring. IMPOSSIBLE. Unfair to him, first and foremost, unfair to my family and to me if I am honest. So, at your tender age, so special, as you will realise in many years to come, you should not consider having your dad at home for you to do the caring, even with help.
So the way forward. I'm appalled the care home has no manager. Someone should be at least deputising. Every home, needs some sort of manager/ supervisor for concerned relatives friends advocates to meet with. My husband had a very nasty bruised cheek some time ago, and my daughter's and myself were on the case promptly. Manager emailed, words like safeguarding used, insufficient information logged etc. An internal investigation made promptly,to a reasonably satisfactory outcome. Hubby gets very agitated at times with personal care and hates the hoist.
The care quality commission need to be informed that you and other visitors have no management to express concerns too, and that you are worried about the standard of care. I suggest you contact them, request they make an impromptu visit, making an appointment gives staff time to make all seem good ( I never understand that) .
Have you asked staff who they go to if they have concerns, who is doing the rota etc? It's an impossible situation for them to be honest which must have a detremental affect on the residents.
Can you find an advocate?
Please do not have your dad at home with you, especially without a great deal of thought.
My thoughts are very much with you.

Thank you.

I generally was expected such responses and I truthfully respect it, I understand I am only 21 years old and his condition is not something that’ll stay as it is currently or get any better, but worsen and require more and more attention, needs etc. However, being that I am his only hope in the sense of getting proper love and care, it was and always has been an idea.

With regards to manager or supervisors, there may now be a stand in manager or official supervisors, however, I am yet to see or be told there is one and once asking question the Carers get very weird about it and I get scared to push anything there in case they treat him again, nastily. It is a very hush, hush care home and many don’t even understand basic terms. Many are young, have little to no training, can’t speak English and never follow up when I ask to be contact by more advanced staff.

I’m aware he has a social worker but that is all, she contacts myself if she cannot get through to my Nan one a year to do her reports, I have tried contacting her about this and get her voicemail. Unsure about anything else regarding this.

I have contacted CQC and an individual there to see what can be done. Yet to hear a response.

[Olivia_1810]

Oliva - my heartfelt sympathies. Such a dreadful dreadful situation for you....

I think the first and foremost consideration is this - is your poor dad SELF-FUNDING, ie, paying his OWN care home fees, or is his care being paid for by the State?

The answer means a lot to your choices now. IF he is paying his OWN care home fees (ie, out of HIS money, even if this is being administered by his own mother, your gran), then he has complete freedom to move to whichever other care home you would prefer for him. (My MIL has been in two dementia care homes and both have been LOVELY - there ARE good care homes around)

All you and your gran have to do is find a home with a vacancy who can take him, and give a month's notice to his current place, and move him in (a private ambulance for maybe £200 or so should move him, if absolutely necessary).

However, if he is paid for by the state, then is it by SS (Social Services) or the NHS? I think it would only be the NHS if early onset dementia is classed as an ILLNESS (elderly dementia is NOT). If the NHS is paying then I think it won't matter how much money he has.

If the SS are paying, then it automatically means your dad has less than £23000 in savings OR assets (eg, his own house/flat etc) (not yours or grans!).

IF he is being paid for by the state then you can STILL apply for him to change homes to a better one, as others are saying, log all your concerns about his treatment, and 'kick up a fuss'....the magic word in these circumstances is likely to be 'Safeguarding' - it's one of those 'legal terms' which gets social workers and doctors running around. They HAVE to ensure he is 'safe', so raising your concerns about bruises etc is a SAFEGUARDING issue.....

You are desperately young to be coping with this - you are in a good place here, as there is a LOT of expertise amongst members, and there are the team of experts at CUK itself to consult. Your gran is probably finding it all very very difficult as well, given her age, and that it is her son who is so afflicted. Do you have any other relatives? (Yes, where is your own mum in this??) (So sorry if she has died.....)

Don't panic TOO much about this - one of the 'mixed blessings' of dementia is that your dad will have very little memory now, so if something distresses him (like being moved) he truly won't remember it five minutes later.....

A final grim, but essential question - are the doctors giving any indication of how long he will likely live now? It's desperately sad to think it, but at some point, dementia does become a terminal condition. Knowing whether they think he has another year, two, five, ten....will guide your decisions now.

To my mind, the ideal would be to move him to a nicer care home where you and your gran can visit, and make the most of him, but NOT provide the gruelling and - I agree, impossible - level of care that someone with advancing dementia requires. My poor MIL could NEVER come home any more....

(Very well done on getting your degree - it must have been very hard in the circumstances - again, to your credit.)

Wishing you as well as can be in these VERY difficult circumstances - you are a brave your woman, with far more to cope with than you should have to, and that is
entirely to your credit.

Thank you.

It is a bit of a weird one really, he was a social worker and like many, made redundant after over 25 years with Birmingham city council, however, in the mist of losing his passion and ultimately livelihood many other damagaing life events took place and in the end he went missing, became homeless and I could not find him for a number of years. My DAD has generally suffered with mental illness his whole life from an extremely shocking and abuse childhood he failed to escape, however, with his perseverance and probably slight nativity, he chose to give back to the world and not let this take hold of him. So no one suspected he had something so bad developing.

Nevertheless, due to this he was immediately put through the system and given NHS (government) funding, when attempting to provide details of savings or prior work, I was ignored way back then as I was deemed too young and his mother was having been absent since my DAD was 17/18 years old came in and gave incorrect information. Resulting in the situation we now have. From my understanding he has a social worker due to the fact my Nan couldn’t give evidence or proper timeline to his life or things such as account details, so the family lost any power in that sense. Now older, I’ve been told the only way to gain this back is if I take her and the social worker, maybe others, to court and fight for the power of his living back, granted I can provide evidence which I have.

Everything else kindly asked has been answered in other parts of this thread, if you could please read that to save me repeating myself, I’d be grateful.

Again, if you’d like to ask more details or can provide me with anything at all, I’d be more than happy.

[Henrietta]

Hi Olivia, You may well already have found it but if not please do look up the Alzheimer's Society's forum called Talking pOint. They deal with all types of dementia including early on set and reading through some of these threads will give you a better idea of the type of care needed that may lie ahead and also plenty of info on funding issues.

https://forum.alzheimers.org.uk/

https://forum.alzheimers.org.uk/search/ ... set&o=date

https://www.alzheimers.org.uk/sites/def ... gnosis.pdf

https://www.alzheimers.org.uk/?_gac=1.2 ... DAQAvD_BwE
click on get support

[bowlingbun]

Hi Olivia,

Just wrote a long post and then it disappeared, my fault. Only have time for a very brief summary.

Try to split things up into priorities.

SHORT TERM PRIORITIES
When did you contact CQC?
What is happending to dad's weekly personal spending allowance?
If the home can't give you an immediate open and honest answer, flag this up with CQC immediately, they need to investigate to see if it is being stolen.
Make a formal complaint to Social Services about possible physical abuse perhaps?
Ask the home who is funding dad's care. If they won't tell you, ask SSD to establish this.

MEDIUM TERM
Contact DWP immediately if there are any concerns about the weekly allowance.
Contact his old employer, as he should have a "pension pot" which may be payable as he is so ill.
Contact the Office of Public Guardian about your grandmother's fitness to have POA - totally unsuitable surely if she abandoned him?!
Social Services should have a Client Affairs Team who can investigate and handle enquiries.

LONG TERM
IF dad is definitely receiving NHS Continuing Healthcare, you may be able to manage this directly.
That would then lead you to your final hurdle, housing.
You need to start a list of what equipment, room, support, bathing facilities he would need.

Please don't see us as being "against" you, see us as a lot of kindly friends who only want the best for you, and dad. Too many people have started caring without the full facts. Some people here have cared for relatives until they died. There is no "one size fits all" with caring.

We just don't want you to regret things in the future. I have, and so have many others.