Dad-min: when will it stop?!

DaftDad

Registered User
Apr 8, 2024
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The good news is I'm just off the phone from an OOH GP. He sounded very concerned at my description of Dad's behaviours and said he'd be lodging a safeguarding referral today. He described the SS capacity assessments without family involved as inaccurate and agreed people with dementia can be deceptively convincing. He said he thought at minimum like Dad should be taken to an assessment unit for them to see what he's actually capable of or not but that a residential setting sounded most appropriate. I explained about the local authority financing and he agreed that he's seen too many examples where people are left until they get into severe danger or injury before they are helped.

He's sending a GP out and I'll have to be sure to watch the Ring doorbell and talk to Dad and make him go back inside, if he starts trying to wander this afternoon. I'd feel dreadful if another GP went out to find him not there, I don't like wasting their time.
 

alz77

New member
Feb 7, 2024
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You can get trackers that you can put inside soles of shoes or inside watches so you can see exactly where your loved ones are, might help whens he is out and about?
 

DaftDad

Registered User
Apr 8, 2024
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Well. Mixed outcomes really. The doctor went out, a different one to who spoke on the phone with me. He thinks Dad's pain is spondylitis and sciatica and prescribed Naproxen, which Dad said he would refuse to take.

I asked the doctor how he presented and he said fine. I asked whether he'd assessed his dementia and the response was "he knew who the Prime Minister is and where he went yesterday." I asked where Dad said he went yesterday. Dad's answer to the doctor is completely incorrect. I told the doctor where he HAD been and at this point, he started trying to close the conversation down. I explained his colleague who'd phoned earlier was making a safeguarding referral and the doctor who'd seen Dad just said "oh is he?" and again tried to close down the conversation. I explained Dad often refuses to take medication, I asked him did he ask Dad about what his regular daily meds are (no, he hadn't) and had he asked anything more in depth than the Prime Minister and what did he do yesterday? No, he hadn't.

Dad gets a daily newspaper every day and so it's highly unsurprising he might know who the Prime Minister is. It's no measure of how serious someone's dementia is on its own. The doctor didn't really have a reply when I explained where Dad HAD been yesterday - his pre-1947 childhood home.

The doctor then asked me had Dad been deemed to have capacity and I explained this had varied depending on who assessed him. He didn't venture an opinion himself.

So. Mixed. I'm not confident from the doctor who went out and was only there for less than 20mins that anything useful will happen. I hope that the safeguarding referral will do something but not if this second doctor's incomplete assessment is held in greater regard than the GP I spoke to.

I had asked for the doctor to dial me in on the phone and have it on speaker so I could hear Dad's responses and contribute but they didn't do that.
 

DaftDad

Registered User
Apr 8, 2024
64
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You can get trackers that you can put inside soles of shoes or inside watches so you can see exactly where your loved ones are, might help whens he is out and about?
Thanks. We track his phone. He has different shoes that he might wear, different coats, different hats and he has mainly stopped wearing his watch. His glasses are the only cast iron thing he wears and trackers are too big not to be seen on a pair of glasses. The phone tracking is working okay for now but we might have to rethink if he stops taking his phone. He's pretty obsessive about carrying his phone but he's not very good at using it anymore.
 

Always smile

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Nov 24, 2022
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A glimmer of hope that someone understands. It must feel like you’re back to square one a little. Although more people being aware is a good thing. Amazing how some people in Authority still choose to take what the dementia patient says as truth….they seem to ignore the basic effect of dementia, ie, the memory is going and not many things said are the truth….likely to be made up in the moment, but always convincing. Plus they seem to ignore what we say sometimes.

Prior to Covid, my Mum was out and about. Often walking past her house as she didn’t want to go back due to the ‘men waiting for money’. A few times I turned up randomly and had to coax her inside. However, I had to get her paper/food etc during Covid as she just didn’t understand it all. I had to get there before I knew she would go out every day for 6 months, so prior to 9.30am. Then we got the paper delivered after that. That helped. Mums behaviour has changed since then. She goes outside to the drive and neighbours only. Has not ventured anywhere else by herself in 3 years. Yet.

Over time, your Dad will change his habits as he sadly begins to not remember to go out maybe. It’s a sad state of affairs, but as his memory declines, he will begin to change his ways. However, I really hope you all get the help and support you need well before this stage though. Keep pushing them.
 

DaftDad

Registered User
Apr 8, 2024
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Turns out that the out of hours GP did NOT actually prescribe anything, from what can be understood. Spoke to his usual GP surgery before 09:00 but they say there's nothing on the 111 logs about a prescription for anything. So I've been waiting (at work) for a GP to call me back to discuss, as usually they would want to see the patient themselves before prescribing anything. But now we've missed the daily cut-off (11:00) for home visits, so even though I called before 09:00, if a GP calls me this afternoon, I will need to call again tomorrow before 11:00 to put him on tomorrow's home visit call list, because they won't carry it over from today.

I am a wheelchair using parent who will be 100% responsible, on my own, today, tonight and all of tomorrow, until Wednesday PM, for my daughter, as my husband is away with work. I am expected by the 111 system and GP to chase around, waiting for calls whilst trying to work; make lots of unnecessary extra calls to resolve a situation that should not happen - the out of hours GP DID assess him in person yesterday and told me he'd prescribed Naproxen. It should be a simple case of sending one of his carers to the local pharmacy to collect it, but no. That would be too easy.

I called a care home that has vacancies. Long story short, because Dad owns his house (with mortgage), he would have to be a self-funder, but his actual cash liquidity is next to nothing. We would not be able to pay anything until his house is sold and his local authority will not make a deferred payment arrangement if there is any mortgage on a house. How in the name of **** would he get into a care home?! The home I spoke to professes experience in dealing with wanderers and challenging dementia cases and she informed me that many homes will hear about his history of wandering and aggression and use this as an excuse not to accept him anyway. We will therefore be heavily restricted in which homes we could make use of, and this is all assuming they could be paid for.

No-one in the family can afford to pay top-up fees, but his local authority's payment rates of about £710 a week don't seem to match any care home at all, let alone ones who will accept an aggressive wanderer.

Today has made me far less hopeful that we are going to achieve anything at all.

Dad phoned me at about 13:30, when I was in a work meeting, so I went out. He was agitated because an unknown woman (aka the lunchtime carer) had "just walked in" and asked him how he was. He didn't seem to compute that carers come every day between 12:00 - 13:00 for a midday call. He didn't understand/accept she would have first tried knocking and that she DID call into the house "hello XYZ, it's ABC come to check up on you" because he is deaf and has forgotten how to use his hearing aids. I could hear the lady call into the house when I played back the Ring doorbell footage of her going in.

Then he asked me (tearfully) if I could take him on a trip soon. I asked where. He wants me to take him to the village where he went to school from age 8, which is some distance away. He was taken there over the Easter period by someone else (who shouldn't have done, but that's another story) but has, of course, forgotten that he's been there. He got quite upset when I said I would try to take him another day, because in his mind, there's either NOW, or that's it.

I'm sat at my work desk, typing this, and wondering how on Earth we will ever resolve anything with the funding issues, his difficult presentation and the complete lack of joined up anything from GPs and others.

So far, no comms from social services, despite the weekend safeguarding referral from the out of hours phone GP person. I await............
 

phill

Registered User
Aug 8, 2007
55
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his local authority will not make a deferred payment arrangement if there is any mortgage on a house
If this is what social services have asserted, you might want to try pushing back by asking them what their legal basis is for that policy. My understanding is that they can’t have a blanket policy to that effect, and that they should at least take into account how much is outstanding on the existing mortgage before deciding whether to refuse a DPA.
 

DaftDad

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Apr 8, 2024
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If this is what social services have asserted, you might want to try pushing back by asking them what their legal basis is for that policy. My understanding is that they can’t have a blanket policy to that effect, and that they should at least take into account how much is outstanding on the existing mortgage before deciding whether to refuse a DPA.
This is what his LA website says about deferred payment agreements:

In order to apply for the Deferred Payment Scheme you must:

have capital (excluding the property) of less than £23,250
be professionally assessed as requiring and be entering permanent residential or nursing care in a registered care home
own or have part legal ownership of a property, which is not benefitting from a property disregard, and ensure your property is registered with the Land Registry (if the property is not, you must arrange for it to be registered at your own expense) – your financial assessor can advise on how to do this
have mental capacity to agree to a deferred payment agreement or have a legally appointed agent willing to agree this

Whilst in the agreement, you will also need to:

  • have a responsible person willing and able to ensure that necessary maintenance is carried out on the property to retain its value, you are liable for any such expenses
  • insure your property at your expense
  • pay any client contribution as agreed through the deferred payment agreement. If you fail to pay the client contribution the council reserves the right to add this debt to the loan amount
  • there can be no other beneficial interests on the property, for example outstanding mortgages or equity release schemes, unless this is approved by the local authority


The last paragraph is the bit about no mortgages on the property. Dad's mortgage is around 60% of its current market value. We were advised that the LA generally avoids making deferred agreements with any mortgage present and with so much of the property value mortgaged, it's exceptionally unlikely they will offer deferred payments.
 
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Sarasa

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Apr 13, 2018
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Nottinghamshire
I've been wondering if it is worth you contacting the safe guarding department of your local social services, which is not always the people you've been dealing with. It really sounds like your dad needs someone to look after him 24/7 and is in danger of something dire happening without that in place.
 

DaftDad

Registered User
Apr 8, 2024
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I've been wondering if it is worth you contacting the safe guarding department of your local social services, which is not always the people you've been dealing with. It really sounds like your dad needs someone to look after him 24/7 and is in danger of something dire happening without that in place.
This one place where he's gone wandering. It's a small spit of sticky mud, shingle and sand at the edge of a massive, deep, tidal river. It's often covered over at high tide. He was down wandering on this on mud/sand on Saturday, in high winds and rain:

Image shows a small area of sand and sticky mud, next to a large tidal river.


I don't think this is safe. The GP and carer team who know this area don't think it's safe. I just need SS to agree these things/places aren't safe.

The GP has now called me and her opinion was "social services need to do more," but my reply was "please can you/the GP make safeguarding reports and report these concerns too?" GP has agreed to send a nurse practitioner to the house at an unspecified point in the future (reception will call to arrange) and take blood, do urine test and weigh him. They will prescribe the Naproxen etc. for carers to collect tomorrow.

I'll try to get through to the safeguarding team tomorrow, around work and child-related responsibilities etc.
 

jugglingmum

Registered User
Jan 5, 2014
7,113
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Chester
Instantly recognisable to me!!The view across the river on the train to work. But that's of no help to you.

And definitely tidal.

I've followed your threads and hadn't realised you are fairly local to me.

I'm sorry you are having so much trouble with SS.

I think you need to start phoning police when you see your dad in a dangerous area, explain you are in a wheelchair with limited access to transport (lie if necessary). And use the phrase "vulnerable adult" at risk of harm. The police automoatically report to SS every time they are called out to a vulnerable adult and lots of calls will help tip things over.

I suggest you document everything from your posts on here and email SS, the head of SS and the head of the council, and your dad's MP (if different to your own). google should help you find email addresses.

I also think it is worth you speaking to the helpline as they if nothing else will be supportive but might give you some other key words.

When I moved my mum to a care home I used a private social worker to find one and paid from mum's funds, but given from your posts your dad needs council funding I'm not sure this would help you.
 

LouiseW

Registered User
Oct 18, 2021
128
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Hi - reading your posts takes me back to the life I was living 2/3 years ago.

I totally empathise with you.

It seems to me that you need to consider resigning on paper as your Dads carer by writing to SS and his GP making it clear that you will no longer be supporting your Dad.

I had to do this in 2022 after our family spent a year in the place your family is in now bouncing between GP, hospital, police, random strangers, weird goings on, unsafe drug prescriptions, social services no shows etc etc

It did start a chain of events that were also crazy but did result in Dad entering residential care (he immediatley settled in and is still there now content and well cared for)
Its counter intuitive and emotionally hard to do and it also means that you are temporarility cut right out of the loop as you have resigned and this means going from being the centre of communications / care to being right out in the boonies as far as communicating with the authorities goes.

In our case - Social Services continued their policy of ignoring Dads existance but now the GP was aware how useless they were because he tried to deal with them he referred Dad to the Community Mental Health Team.

They sent a Dr out to see Dad and I got a phone call a few weeks later from them where they reported to me that Dad was a domestic god who managed every aspect of his life with no help form anyone and had a brilliant system for ensuring that he took his meds correctly. I knew this to be total bull**** so asked for evidence - the Dr told me that all the information had come from Dad !!!!!!!!!

I went ballistic and did alot of shouting, the Dr then called me back and said they would send a nurse round every fortnight for a while to assess the situation.

After a couple of weeks the team called me and asked if I would meet the Dr at Dads house.
At the meeting the mental health Dr told Dad that his team had been telling Dad he was not safe to live alone for weeks and as he (Dad) had done nothing about it so this was his last chance or they would section him.

I was flabbergasted that no one had told me and that they had expected him to sort out his own 24 hour care, but it was enough to get him into respite at a care home which led to becoming a permanent resident.

I did have both POAs in place at the time.

Good luck, and I hope you and your family get through this impossible phase as smoothly as possible, only someone who has gone through it can appreciate how mad, time cosuming, awful and chaotic this is.
I remember going to London for an overnight stay to have a much much needed break - over the 24 hour "break" I had 19 phonecalls from 6 different agencies (Carers, Care line call centre, first responders, hospital, dads neighbors, pharmecy at the hospital and the hospital complaints department following up on a previous complaint made by me about an unsafe discharge ) and 25 calls from Dad all night wanting to know why he was on a coach trip to France and appeared to have been kidnapped and put in prison, and could I get him some money so he could buy lunch.

AND YES because he knew who the PM was and where he had been yesturday the hospital deemed him to have full capacity

You have my respect and compassion xxxx
 

DaftDad

Registered User
Apr 8, 2024
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@jugglingmum - yes, Dad lives locally to you. My brother and I are in Wigan/Bolton areas though. He's currently en route back to the same area, so will keep an eye on the tracker and call the Police if it looks like he's somewhere dangerous again. Currently looks like he's going to the Church where his parents got married in 1935.

@LouiseW - this was the advice of one social worker. She said so long as family are doing anything, the social services stuff will be kept away. It's absolutely bananas and ridiculous that you have to basically abandon your relatives and place them at risk, to get any proper help.

I still haven't heard from the SS people after the weekend's safeguarding referral and the GP hasn't been in touch about this alleged home visit. I'm in work Teams meetings quite a bit today, so it's hard to make calls and of course, the docs closes the phone lines between 12-1 for lunch, which is when people like me might be able to call. And they don't accept requests for appointments over the phone anymore, it all has to be submitted via PATCHES and for home visits, they want you to do it as early in the morning as possible (when I am trying to get a child ready for school/to school and me ready for work/to work, from a wheelchair). Great, innit? 😂
 

LouiseW

Registered User
Oct 18, 2021
128
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@jugglingmum - yes, Dad lives locally to you. My brother and I are in Wigan/Bolton areas though. He's currently en route back to the same area, so will keep an eye on the tracker and call the Police if it looks like he's somewhere dangerous again. Currently looks like he's going to the Church where his parents got married in 1935.

@LouiseW - this was the advice of one social worker. She said so long as family are doing anything, the social services stuff will be kept away. It's absolutely bananas and ridiculous that you have to basically abandon your relatives and place them at risk, to get any proper help.

I still haven't heard from the SS people after the weekend's safeguarding referral and the GP hasn't been in touch about this alleged home visit. I'm in work Teams meetings quite a bit today, so it's hard to make calls and of course, the docs closes the phone lines between 12-1 for lunch, which is when people like me might be able to call. And they don't accept requests for appointments over the phone anymore, it all has to be submitted via PATCHES and for home visits, they want you to do it as early in the morning as possible (when I am trying to get a child ready for school/to school and me ready for work/to work, from a wheelchair). Great, innit? 😂
Bananas and riduculous it is, and it does not help that no one in the non dementia carer world believes you as it sounds .... well......... bananas and ridiculous.
 

DaftDad

Registered User
Apr 8, 2024
64
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Well. Swings and roundabouts.

Good news - a specialist older people's nurse called me, sounded totally understanding of the situation etc. etc and said she'd send a rapid response nurse to the house to do various health checks etc. I messaged Dad and told him not to go anywhere.

Bad news - within a few minutes of me telling him not to go anywhere, he set off out of the house again. So he's not at home for the rapid response nurse, he is off wandering.

ARGHHHHHHHHHHH!!!

And I had to hang up a Teams call with someone I manage, to answer the nurse.
 

Sarasa

Volunteer Host
Apr 13, 2018
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Nottinghamshire
That is so annoying @DaftDad. Do you think telling your dad someone is coming round makes him go out or would he have gone anyway. My mum never wanted anyone to come and see her as 'nothing was wrong' so I had to resort to various bits of subterfuge to get her the help she needed.
 

phill

Registered User
Aug 8, 2007
55
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That is so annoying @DaftDad. Do you think telling your dad someone is coming round makes him go out or would he have gone anyway. My mum never wanted anyone to come and see her as 'nothing was wrong' so I had to resort to various bits of subterfuge to get her the help she needed.
Another possibility is that dementia is affecting the way he experiences the passage of time. For example, I could tell my dad “remember that the repairman will be arriving in 15 minutes, so you need to wait in for him” - but after 5 minutes he genuinely believed that at least an hour had passed, so he would conclude that the repairman had “let him down” and he would therefore set off for a walk, and a bemused repairman would be ringing me to say there was no answer at the door…