Not sure how to help - Father with dementia - Support & Acknowledging the Issue - ( Elderly Carer)

[Medazzaland]

Hi good afternoon all - First post so please be gentle
Its a bit of a tale so bare with me

My wife and I had noticed that my dad ( 81) has been confused and showing signs of dementia for a long time - may be 3 years plus. Little things like repetitive conversations, unsure in unfamiliar places, unable to handle simple tasks like car parking machines, reading and lack of focus on anything. Over the past couple of years and probably not helped by COVID ( dad was shielding) his conversations have become less coherent and ability to converse with anything more than acknowledging your statements and 'passing the time of day i.e. weather, are you ok, sometimes better, others not offering much.

In October last year my fathers health declined and he began a journey that we are still on. ( and confused by). He initially lost 70% mobility almost overnight and saw his GP. This led to a visit to hospital appts for concerns over his bladder ( not serious) and potentially heart issues -
In January he was again ill and was admitted to hospital with ' chest pains' and not feeling 'right' - This led to an extended stay of over 5 weeks in two local hospitals . His symptoms led them to perform a number of scans ( bladder / CT) etc where it was fedback he had signs of deterioration of brain mass although this wasnt the reason he was there. His behaviour over those 5 weeks was at times scary. He resisted the medical staff and we recevied calls to go and 'calm him' a few times.
My mum is dads main carer ( 80) although this is a new task as his 'condition' has deteriorated since approx Oct / Nov.

Throughout his stay he was showing signs of delirium, very agitated and had a ' deprivation of liberty' order served on him at a point. He could blow hot and cold in a few minutes and some of the behaviour was awful, my mum was so embarrassed and upset she didn't know what to do or where we went from here. - His behaviour is like nothing we had seen before and was upsetting for all.

Whilst in hospital he was fitted with a long term catheter which my mum now looks after for him. There was a point where the hospital were debating his ( and i guess my mums) safety if he came home. He has been home for approx 4 weeks and there are very mixed days in terms of behaviour and my mum resenting ( but understanding) what is happening ( i think)

I have lots of questions ( i am the son) as i have never had to support like this and dont understand what / when / how to do best for my parents. questions below - Some are obvious maybe to others so apologies if so

1. My dad was driving up until November ( hard to believe) - Despite the mentions of dementia on various documents ( discharge report / transfer note) he hasn't been given a 'formal' diagnosis to my knowledge ? Is this something that comes? - Seems like the health care professionals assume we know / its formal but it hasn't been ?
2. Assumption that once we have this - He cant and shouldn't be driving. - Who confirms this for us? He is in total denial he cant ( a point that creates anger)
3. My parents have a healthcare package ( am - dressing / washing) and have had some mobility aids put in place ( toilet / shower / stairs) - Will this end ? Will parents have to pay for this going forward / after a period of time?
4. They have an appointment at the memory clinic but not for some weeks - Is this where a further plan of action will be determined?
5. When / where is a decision made regarding ongoing care home / extra support - Who would help?

Welcome any additional thoughts / things i should be thinking of
I'm lost a bit in thoughts and next steps

Sorry for long post

 

[canary]

Hi @Medazzaland and welcome to Talking Point.

It sounds like your dad got a UTI and delirium - which is very common with people with dementia and unfortunately this will often progress the dementia. It is often all overwhelming at this stage. Unfortunately, there is not a lot of help and support for dementia, and what there is is rather fragmented. I will do my best to answer your questions.

Formal diagnosis of dementia will be done by the memory clinic, although they may want to repeat the scan. Depending on what type of dementia it is (Alzheimers, vascular dementia, Lewy Body, mixed, etc) there may be some medication to help. Make sure the doctor is aware of his behaviour. I would definitely ask the doctor at the memory clinic about the driving. Dementia (of any sort) is mandatory to inform the DVLA, and unfortunately it is the responsibility of the person themselves to declare it. A diagnosis of dementia does not necessarily mean an end to driving, but if the doctor says that your dad should not be driving, then your dad may take it better from a doctor.'

With regards to ongoing support - Im assuming that the care package that you have at the moment has been arranged by the hospital on discharge. Contact Social Services for an urgent needs assessment to get help with carers coming in who can assist with washing/dressing, dealing with catheter bags, etc. This is, unfortunately, means tested (but only on your dads income and savings, not your mums), so he may have to pay something.

Where did you get the aids from? My OH had an OT assessment at home and the OT ordered several aids - grab rails, extra bannister, risers for the sofa, bath board and a rollator - which we have not had to pay for. If your aids have been ordered through the OT then there should not be any costs involved (its not means tested).

Extra things to consider -get POA arranged ASAP as you will need this in the future. By the time you realise that you need it it will be too late to organise, so do it now.
You can apply for Attendance Allowance, but your dad has to have had the symptoms for six months, so it might be a bit early. Do bear it in mind, though. Once you have a diagnosis of dementia you can apply for a council tax disregard for your dad, it would be as though your mum were the sole occupier and would be eligible for a 25% reduction.

Any other queries, do post as this is a very friendly and helpful community

 

[Medazzaland]

Thankyou for your response.

You are correct - Care package was linked to discharge - I am unsure of next steps but have a few weeks to go on that. Information useful - thanks

There is a memory clinic appt booked in April which i will make sure ( if i can) that driving is mentioned. His mobility alone would make driving a risk but added with the dementia symptoms its a definite no for me at this stage - Formal confirmation will / might help remove the 'denial' ( when more lucid)

In terms of aids - The local 'social services' have been to fit these ( free) and arent a contentious issue - they help to a degree.

We already have POA and have had for some time. I havent used this and not sure if there is a threshold / process for invoking this - One for further research ? Car the main issue

In terms of 'symptoms' - does the confirmation of Dementia (whatever type) only valid from the memory clinic date? - He has shown symptoms for 2/3 years but not formally confirmed - i.e. when does a 'dementia' timeline formally start?

The problem / challenge is - we go from a more rationale understanding of the issues but then forgetting and next time topic is raised its a totally different response / agitation - What you think is agreed / understood isnt

I am concerned that he retains an ability to ' pull it out the bag' when health care professionals are there / hes at an appt - Its either absolute denial OR anger and really aggressive non compliance with anyone. the people seem to back off but that isnt really helping anyone

My mum also needs support and is currently 'trapped' 24/7 ( dad no acceptance that hes got a problem and refusing a wheelchair / scooter / also no concept of time - doesn't believe hes been in the house for nearly two months and prior to that also) - apart from my visits to take her shopping - on which she is panicking she needs to get back ( dad wont go because he knows he cant walk in reality)

I am scared for my mum and obviously really sad to see my dad in this position. I fear for the next few months

 

[Shedrech]

Hello @Medazzaland
A warm welcome from me too

Cross posted with your post above

I may be just reiterating what canary has written ... taking your points:
4. The memory clinic will look at scans, tests, behaviour and give a diagnosis ... depending on this, meds may be prescribed and info given ... if you can, send beforehand or take along a written list of the changes in your dad that you have noticed, things he can no longer do for himself and your concerns, this will help the consultant ... be brutally honest about your dad's behaviour and the effect on your mum

1. 2. check with the consultant about driving ... the DVLA and Insurance company will need to be advised of any diagnosis ... if you believe your dad is no longer able to drive competently, let the consultant know ... if your dad literally cannot physically get into the car and drive, then maybe don't discuss with him as he will only be agitated unnecessarily

3. 5. If the care package is a reablement package it may well end after 6 weeks ... then either the Local Authority Adult Services will put an agency package in place or suggest a package and possibly an agency for your dad to be funded by him ... do ask the carers they may well know the situation
This page on the main AS site has info on care assessment and paying for care

A care package may include home care visits, day care, respite and visits by OT ... push for as much as possible ... though if your dad refuses eg day care then things become tricky as he can't be forced to go (esp if he is considered to have capacity), though you may find a way to be economical with the truth and sell it to him eg respite as a convalescent stay/holiday/to help out your mum (whatever he might go along with)

Legal and financial

This section outlines the various financial and legal issues that someone with dementia and their carer may want to consider and looks at sources of help and support.

www.alzheimers.org.uk

If your mum is concerned that being her husband's main carer is too much for her and that her safety is an issue, maybe it's time to look into residential care so she can visit as his wife not ... if the bad days involve aggression and or violence do tell Adult Services, let them know that your dad is 'a vulnerable adult putting your mum at risk of harm' and this is a 'safeguarding issue'

Your dad's behaviour isn't deliberately done, it's a symptom of the dementia and no reflection on the man he is or on your mum ... I hope the memory clinic and Adult Services offer your mum and dad the support they need

You are right about the ability to pull it out of the bag, we call it 'host mode' here ... not all medics/professionals seem to appreciate that this happens, which is why it's really important to give them as much background info as you can so they have the full picture and why writing to them beforehand is helpful, to warn this may happen and maybe even suggest questions/prompts that will break through the veneer ... don't be afraid to let them see the aggression and digging in of heels as this needs to be dealt with and some meds may help

It's not so much that your dad is in denial as that the dementia (if it is present) has damaged his brain and so affected his rational thinking ... he doesn't see any changes or that anything is wrong so anyone saying there's a problem is wrong, hence the strong response ... best not to discuss, explain, argue, though the medics do need to see his reactions as they are symptoms

Do help your parents both arrange LPAs asap as these will help you to support them ... however, if your dad no longer has capacity to put LPAs in place someone will need to apply to be his Deputy to have the legal authority to manage his financial affairs

Make, register or end a lasting power of attorney

How to make a lasting power of attorney (LPA): starting an application online, choosing an attorney, certifying a copy, changing an LPA.

www.gov.uk

If you as Attorney honestly believe that your dad no longer has capacity to manage his affairs himself (as long as there is no specific stipulation in the LPA) you can take on the management ... you will have to let banks etc know and they will need to see a certified copy of the LPA (do not let the original out of your safekeeping)

 

[canary]

Hi @Medazzaland
I had not appreciated from your original post how long this had been going on for. Symptoms doesnt mean as from being formally diagnosed - it means when he is showing these problems, so you should certainly qualify for Attendance Allowance.

The ability to "pull it out of the bag" is well known on here - it is known as "host mode" or "showtiming" and is amazingly irritating as others do not get to see the problems.

Please contact Social Services for a needs assessment for your dad. It sounds to me as though, in addition to the carer slots (that he needs), SS may be able to organise day care. Other things are a sitting/befriending service (can also be organised through organisations like AgeUK and TuVida) so that your mum can go out for a break.

Im glad that you have got POA. I think you are going to need it soon, if not already

 

[Medazzaland]

thanks for your replies both - We are slowly making progress. As i have read more threads on here i understand more which is good. The uncertainty seems common and in a small way glad to be understood and not alone.

I dont know what the next few months hold but its got potential to get bumpy i suspect.

Best Wishes
M