Hi, I’m new to the forum and new to dementia, well, if it is dementia my dad has and I’m pretty sure it is. It’s lockdown right now so I thought I’d make a start to finding information and support for my dad who lives 500 miles away and has no family close by to look in on him. He has not been diagnosed with dementia and his story is a long one that’s reached a point whereby I don’t feel I can continue to do nothing about it. He is 78 and extremely lonely since losing my mum about 12 years ago. He’s very creative and academic making the loneliness more difficult and if I’m honest, I think he wouldn’t be exhibiting half of what he does if he had family or friends popping in, taking him out and to have conversations with but there’s no denying that this is more than just forgetting things, there’s hearing voices, having conversations with the voices, some of whom he’s named to help him when referencing them. He’s delusional and has grand ideas and plans. His conversations often don’t connect. He’ll jump from one subject to another and he will repeat almost word for word, the same lines time and time and time again. He’s scared, he believes his house has hidden surveillance cameras, he believes he’s being watched, talked about, made fun off, and threatened. Occasionally a voice will be kind but most are threatening and cruel. He has slept with a hammer under his pillow and had his house alarm upgraded. He’s hung a full length curtain in front of his toilet to stop ‘people’ watching him, there is no window. He keeps misplacing things but he’s convinced it’s these people entering his house and taking them or hiding them on purpose to make him look like he’s going off his mind so he will be taken from his home which is what they are after. They want his house to conduct their business from which he believes several other neighbouring houses are all part of the same set up, out to get his property. I could go on. Since this is just an introduction, I’ll leave it at that for now but what I’m here for is to find out if my dad has dementia or some other mental health and how I can go about getting him care and support without him getting angry and distrusting me. I’m one of few people he trusts. I look forward to sharing all that I’ve been through with dad and reading whether anyone else has had similar experiences. It’s very late right now so I will go to sleep and look forward to conversing with you all. Thank you and apologies for the long post.How to help dad from 500 miles away ?
- Thread starter SMBeach
- Start date
Hi, I’m new to the forum and new to dementia, well, if it is dementia my dad has and I’m pretty sure it is. It’s lockdown right now so I thought I’d make a start to finding information and support for my dad who lives 500 miles away and has no family close by to look in on him. He has not been diagnosed with dementia and his story is a long one that’s reached a point whereby I don’t feel I can continue to do nothing about it. He is 78 and extremely lonely since losing my mum about 12 years ago. He’s very creative and academic making the loneliness more difficult and if I’m honest, I think he wouldn’t be exhibiting half of what he does if he had family or friends popping in, taking him out and to have conversations with but there’s no denying that this is more than just forgetting things, there’s hearing voices, having conversations with the voices, some of whom he’s named to help him when referencing them. He’s delusional and has grand ideas and plans. His conversations often don’t connect. He’ll jump from one subject to another and he will repeat almost word for word, the same lines time and time and time again. He’s scared, he believes his house has hidden surveillance cameras, he believes he’s being watched, talked about, made fun off, and threatened. Occasionally a voice will be kind but most are threatening and cruel. He has slept with a hammer under his pillow and had his house alarm upgraded. He’s hung a full length curtain in front of his toilet to stop ‘people’ watching him, there is no window. He keeps misplacing things but he’s convinced it’s these people entering his house and taking them or hiding them on purpose to make him look like he’s going off his mind so he will be taken from his home which is what they are after. They want his house to conduct their business from which he believes several other neighbouring houses are all part of the same set up, out to get his property. I could go on. Since this is just an introduction, I’ll leave it at that for now but what I’m here for is to find out if my dad has dementia or some other mental health and how I can go about getting him care and support without him getting angry and distrusting me. I’m one of few people he trusts. I look forward to sharing all that I’ve been through with dad and reading whether anyone else has had similar experiences. It’s very late right now so I will go to sleep and look forward to conversing with you all. Thank you and apologies for the long post.
Good morning @SMBeach and welcome to the forum.
I’m sorry to hear about the problems your dad is experiencing. It must be even harder for you being so far away from home.
Under normal circumstances it would be reasonable for you to try to arrange for your dad to have an appointment with the GP as a first step in an assessment process. I don’t know how easy this would be in the current circumstance we’re all facing. Of course you also say that your dad might be angry or distrust you if you try to get him help. I wondered if you have Power of Attorney for you dad or if you know your dad’s GP well enough they he/she would have a telephone conversation about him. I was thinking that as a first step you might be able to raise your concerns with the GP in a phone call and get some advice regarding the way forward.
In the meantime I wondered if this fact sheet would be of any interest to you -
www.alzheimers.org.uk
I’m glad you’ve found the forum and I know you will get lots of help and support here.
I’m sorry to hear about the problems your dad is experiencing. It must be even harder for you being so far away from home.
Under normal circumstances it would be reasonable for you to try to arrange for your dad to have an appointment with the GP as a first step in an assessment process. I don’t know how easy this would be in the current circumstance we’re all facing. Of course you also say that your dad might be angry or distrust you if you try to get him help. I wondered if you have Power of Attorney for you dad or if you know your dad’s GP well enough they he/she would have a telephone conversation about him. I was thinking that as a first step you might be able to raise your concerns with the GP in a phone call and get some advice regarding the way forward.
In the meantime I wondered if this fact sheet would be of any interest to you -
What is dementia? Symptoms, causes and treatments
The word 'dementia' describes a set of symptoms that over time can affect memory, problem-solving, language and behaviour. Alzheimer's disease is the most common type of dementia.
www.alzheimers.org.uk
I’m glad you’ve found the forum and I know you will get lots of help and support here.
Hi @SMBeach, welcome to the forum. It sounds as though your Dad is living in a state of constant fear, which must be extremely difficult for him and very worrying for you. You seem to suggest it is a fairly recent development (i.e. he hasn't suffered from paranoia during his earlier life) and I assume he isn't on any new medication that may have contributed to his anxiety or conversely stopped taking any meds to manage it? Is it any particular time of the day this occurs or is it now a constant state of mind? I'm assuming you are able to speak with him on the 'phone or skype at the moment to check on his welfare?
As @Izzey has suggested I do think you need to speak with his GP, however, if you do not have a Power of Attorney in place that may prove problematic. You could however lay your concerns out in a letter or email and send it to them, asking for their opinion (putting the ball in their court). If the Doctor felt there was some form of dementia they would normally send Dad for cognitive tests and potentially brain scans to provide diagnosis - both of which would likely take sometime. However in an emergency situation the Doctor may be able to see your Dad and maybe prescribe something that would ease his agitation.
I think if you think Dad is in immediate danger or neglect and your aren't able to visit perhaps you can try and contact Social Services too - although I'm guessing your Dad won't welcome any such intervention. It must be extremely challenging for your being that distance from Dad. I wish you all the best. Keep posting.
As @Izzey has suggested I do think you need to speak with his GP, however, if you do not have a Power of Attorney in place that may prove problematic. You could however lay your concerns out in a letter or email and send it to them, asking for their opinion (putting the ball in their court). If the Doctor felt there was some form of dementia they would normally send Dad for cognitive tests and potentially brain scans to provide diagnosis - both of which would likely take sometime. However in an emergency situation the Doctor may be able to see your Dad and maybe prescribe something that would ease his agitation.
I think if you think Dad is in immediate danger or neglect and your aren't able to visit perhaps you can try and contact Social Services too - although I'm guessing your Dad won't welcome any such intervention. It must be extremely challenging for your being that distance from Dad. I wish you all the best. Keep posting.
Thank you for both your replies @Izzy and @Pete1
I do have Power of Attorney as it happens. Dad decided to do this off his own back and I have all the papers. Although he recently tried to get me to use it to get himself discharged from hospital during blood transfusions. He seemed to think he could manipulate me to use the power to get him what he wanted, knowing the professionals wouldn’t agree to his own decisions. He has slowly gotten worse as each year goes by and I’d say it’s about 4 of 5 years I’ve been aware things aren’t right. He was given an anti psychotic once and after just one pill he wakened in the night having wet himself badly. His legs turned to jelly causing him to nearly fall down the stairs as he tried to get to the toilet and take care of himself. He tells me he didn’t take any more after that one pill and apparently the psychiatrist or doctor agreed he shouldn’t but wasn’t given an alternative so he doesn’t take anything at all for his mind. Thank you so much for the leaflet, I will read that. I have been keeping in touch via face time with dad and phoning and texting. He has good days where he’s clear as a bell and you’d have no idea there was anything wrong and the next day making no sense what so ever or being very confused, angry, upset or suspicious. I have been able to order him online delivery for shopping and my younger brother who is in the U.K. for work (normally lives in Philippines) has been FaceTiming and calling too and is starting to get a taste of what I’ve had for the last few years. My other older brother lives just 6 miles from my dad but has his own relationship issues with him which go back years and he has never helped me in the slightest. He doesn’t pop in on dad, get shopping or call him. He wouldn’t even help when my dad was in hospital having a general anaesthetic and I’m close to falling out with him. I’m a divorced single parent to 3 children and 500 miles away and I had to go all the way to dads just to try get things done fir him like connecting his printer etc as my brother wasn’t offering. I also am self employed and work from home and it seems it’s all being left to me. I will stay in touch with dad daily and keep a diary of all that he does and says and hopefully get dad to agree to see the doctor again with a view to him being prescribed something to help. I’m not holding my breath there though as my dads view is that as soon as he accepts medicine for his mind, he’s heading down a slippery path towards being ‘removed’ or ‘taken’ from his home. Sorry to go on. I will have a good browse through the forums and continue that way.
I do have Power of Attorney as it happens. Dad decided to do this off his own back and I have all the papers. Although he recently tried to get me to use it to get himself discharged from hospital during blood transfusions. He seemed to think he could manipulate me to use the power to get him what he wanted, knowing the professionals wouldn’t agree to his own decisions. He has slowly gotten worse as each year goes by and I’d say it’s about 4 of 5 years I’ve been aware things aren’t right. He was given an anti psychotic once and after just one pill he wakened in the night having wet himself badly. His legs turned to jelly causing him to nearly fall down the stairs as he tried to get to the toilet and take care of himself. He tells me he didn’t take any more after that one pill and apparently the psychiatrist or doctor agreed he shouldn’t but wasn’t given an alternative so he doesn’t take anything at all for his mind. Thank you so much for the leaflet, I will read that. I have been keeping in touch via face time with dad and phoning and texting. He has good days where he’s clear as a bell and you’d have no idea there was anything wrong and the next day making no sense what so ever or being very confused, angry, upset or suspicious. I have been able to order him online delivery for shopping and my younger brother who is in the U.K. for work (normally lives in Philippines) has been FaceTiming and calling too and is starting to get a taste of what I’ve had for the last few years. My other older brother lives just 6 miles from my dad but has his own relationship issues with him which go back years and he has never helped me in the slightest. He doesn’t pop in on dad, get shopping or call him. He wouldn’t even help when my dad was in hospital having a general anaesthetic and I’m close to falling out with him. I’m a divorced single parent to 3 children and 500 miles away and I had to go all the way to dads just to try get things done fir him like connecting his printer etc as my brother wasn’t offering. I also am self employed and work from home and it seems it’s all being left to me. I will stay in touch with dad daily and keep a diary of all that he does and says and hopefully get dad to agree to see the doctor again with a view to him being prescribed something to help. I’m not holding my breath there though as my dads view is that as soon as he accepts medicine for his mind, he’s heading down a slippery path towards being ‘removed’ or ‘taken’ from his home. Sorry to go on. I will have a good browse through the forums and continue that way.
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Hi @SMBeach, you can 'go on' as much as you like - it helps to share, and it sounds as though you have a lot to deal with, and trying to help dad from such a distance will always be really challenging. I expect when you call you are anxiously hoping when he answers that he is having a good day - the unpredictability always makes us more hesitant to act (as they seem OK). It's really good news that you have the POA in place ? It's interesting that they have tried meds previously and that would seem an angle to explore, although its the perennial problem with those types of meds the users often won't take them if they are left to their own devices (just by nature of the condition). Perhaps if the GP decides to prescribe further meds you can see if it can be provided in blister packs by the pharmacist, then at least it will be more obvious what he is taking if perhaps you can arrange some care to attend perhaps once a day to check that medication has been taken and help with other domestic needs?
Some Local Authorities have set up welfare teams to support vulnerable people during the lockdown. It might be worth having a look on the website of the local authority (both County and District) to see what support is available - so if, for example, you need someone to check on him or help with something they may be able to assist. Just a thought. All the best. Keep posting.
Some Local Authorities have set up welfare teams to support vulnerable people during the lockdown. It might be worth having a look on the website of the local authority (both County and District) to see what support is available - so if, for example, you need someone to check on him or help with something they may be able to assist. Just a thought. All the best. Keep posting.
Thank you @Pete1
I have sent him the local council volunteer support team information and a list of local smaller shops and phone numbers for him, including the doctors and chemist. If it wasn’t for his suspiciousness of people and his assumption that people aren’t who they say they are or are part of a conspiracy I’d arrange for someone to pop in and check he’s ok. However, a stranger and perhaps someone not experienced with dementia etc might find it too much. If he did trust them , I’d worry he wouldn’t leave them alone, seeing their kindness as something else on a more personal level. There’s been 2 females (one a neighbour who used to cut his hair) and the other a Nurse who tended him in hospital for other medical care. He believed they both were interested in him affectionately and the situation with his neighbour ended up in court. I think everyone felt his mind wasn’t right, he was asked to have tests which he passed. On a good day he would, he’s bright and alert on good days. He didn’t do anything bad to the neighbour, he’d often offer to help her with stuff, but he became a pain and she became uncomfortable but knowing him for many years she didn’t want to upset him. To cut it short, he didn’t take the hints and she ended up reporting him. He’s a person who feels strongly about resolving things when things aren’t going well, even when the other person doesn’t want to resolve things, they just want left alone so that didn’t help his case. I also believe he forgot things she’d perhaps previously said to him as he forgets conversations with me, as though they never took place. The young lady didn’t want to report him to the police, she was clear about that in court and to be honest, his neighbours who attended said nice things about him as they too had known him for years. There may be lots I’ve not been told but I attended the court and there was nothing other than being a nuisance mentioned. I ended up with my dad moving into my house for over a year and it was without a doubt the worst year of my life and very very difficult for my children. We just never knew when he was going home. When he eventually did, he said he couldn’t go home due to the wording of the court order. He was picking it away basically looking for errors and poor writing etc, as he does. He critcises everyone. Nobody in their right mind would have read it the way he did but he used it to say he would not be able to enter his house. He ended up driving to Scotland and living in his car for 8 weeks. I still can’t believe I allowed him to do that but I knew he had a home he could return to. I knew the neighbours didn’t dislike him in the way he spoke. I knew he was expected to return home. I couldn’t handle him anymore. My life stopped for a year and I felt like one of the children while he was here. He acted like he was in charge/control and had a terrible temper and anger which included him thumping his fist on my kitchen table in front of me to make a point. Unfortunately, he’s not your typical nice elderly dad who is happy to be helped. He criticises everything you do to help. He makes everything take much much longer than it needs to be and basically makes it very difficult for people to want to help him. His sister has stopped talking to him due to an argument/close fight between him and his late sisters husband during the time of her funeral. I wasn’t there to witness this. He falls out with everyone and now he’s just 10 times worse. My mum apparently told my older brother in her last days that she was worried about our dad but she never explained to him what she meant. So I do wonder if things started much sooner than I realise. To me, he’s just dad with all his flaws but flaws are so much worse. Can I ask, how are carers paid for? If someone popped in daily to see how he was? Is this provided on the nhs? He owns his own home but has huge debts from his legal bills and I dont think he’s handling his finances well either. He seems to spend lots of money like it’s going out of fashion on all sorts of expensive stuff like the latest iPhone, MacBook, steam cleaners, vacuums, then in the other hand he’s trying to decide how to budget for weekly food shopping. He’s always been very much in control of his own finances and was never one for sharing that information so it’s not natural for me to ask to look and see. Right now my head is just full of stuff he’s done or said. He’s drawn to digital stuff though and obsessed that it’s hacked. Even his car as it’s full of gadgets and he thinks it could be rigged up. He’s very very tiring and draining and not always pleasant but I do care about him, he’s my dad.
I have sent him the local council volunteer support team information and a list of local smaller shops and phone numbers for him, including the doctors and chemist. If it wasn’t for his suspiciousness of people and his assumption that people aren’t who they say they are or are part of a conspiracy I’d arrange for someone to pop in and check he’s ok. However, a stranger and perhaps someone not experienced with dementia etc might find it too much. If he did trust them , I’d worry he wouldn’t leave them alone, seeing their kindness as something else on a more personal level. There’s been 2 females (one a neighbour who used to cut his hair) and the other a Nurse who tended him in hospital for other medical care. He believed they both were interested in him affectionately and the situation with his neighbour ended up in court. I think everyone felt his mind wasn’t right, he was asked to have tests which he passed. On a good day he would, he’s bright and alert on good days. He didn’t do anything bad to the neighbour, he’d often offer to help her with stuff, but he became a pain and she became uncomfortable but knowing him for many years she didn’t want to upset him. To cut it short, he didn’t take the hints and she ended up reporting him. He’s a person who feels strongly about resolving things when things aren’t going well, even when the other person doesn’t want to resolve things, they just want left alone so that didn’t help his case. I also believe he forgot things she’d perhaps previously said to him as he forgets conversations with me, as though they never took place. The young lady didn’t want to report him to the police, she was clear about that in court and to be honest, his neighbours who attended said nice things about him as they too had known him for years. There may be lots I’ve not been told but I attended the court and there was nothing other than being a nuisance mentioned. I ended up with my dad moving into my house for over a year and it was without a doubt the worst year of my life and very very difficult for my children. We just never knew when he was going home. When he eventually did, he said he couldn’t go home due to the wording of the court order. He was picking it away basically looking for errors and poor writing etc, as he does. He critcises everyone. Nobody in their right mind would have read it the way he did but he used it to say he would not be able to enter his house. He ended up driving to Scotland and living in his car for 8 weeks. I still can’t believe I allowed him to do that but I knew he had a home he could return to. I knew the neighbours didn’t dislike him in the way he spoke. I knew he was expected to return home. I couldn’t handle him anymore. My life stopped for a year and I felt like one of the children while he was here. He acted like he was in charge/control and had a terrible temper and anger which included him thumping his fist on my kitchen table in front of me to make a point. Unfortunately, he’s not your typical nice elderly dad who is happy to be helped. He criticises everything you do to help. He makes everything take much much longer than it needs to be and basically makes it very difficult for people to want to help him. His sister has stopped talking to him due to an argument/close fight between him and his late sisters husband during the time of her funeral. I wasn’t there to witness this. He falls out with everyone and now he’s just 10 times worse. My mum apparently told my older brother in her last days that she was worried about our dad but she never explained to him what she meant. So I do wonder if things started much sooner than I realise. To me, he’s just dad with all his flaws but flaws are so much worse. Can I ask, how are carers paid for? If someone popped in daily to see how he was? Is this provided on the nhs? He owns his own home but has huge debts from his legal bills and I dont think he’s handling his finances well either. He seems to spend lots of money like it’s going out of fashion on all sorts of expensive stuff like the latest iPhone, MacBook, steam cleaners, vacuums, then in the other hand he’s trying to decide how to budget for weekly food shopping. He’s always been very much in control of his own finances and was never one for sharing that information so it’s not natural for me to ask to look and see. Right now my head is just full of stuff he’s done or said. He’s drawn to digital stuff though and obsessed that it’s hacked. Even his car as it’s full of gadgets and he thinks it could be rigged up. He’s very very tiring and draining and not always pleasant but I do care about him, he’s my dad.
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Hi @SMBeach, it's very clear you care about your Dad you wouldn't be supporting and helping him if you didn't. Unfortunately with dementia those character traits can become more extreme and often family and friends cannot adjust and take extreme offence at remarks and comments (which is only natural) and the lack of interaction can then make the person more extreme - if that makes sense?
Does you Dad currently get Attendance Allowance? If not, you could apply for that on his behalf that could be used to fund some limited support. Home Care or Domiciliary Care as it is sometimes referred to can be paid for either privately or by the Local Authority where your Dad is, it will depend on the level of Dad's savings (for Home Care a property is not considered as part of the assets that only comes in to play for residential care). I'm assuming Dad lives in England the rules are different in Scotland (which you mentioned). The Local Authority will need to undertake a financial assessment looking at Dad's income and savings to determine what his contribution to care would be (if any). They would also undertake an assessment of needs i.e. understand what your Dad's requirments are and what level of care is required. Generally if you have savings over £23k you will have to commission and pay for the care yourself - which means you can decide on the company / person to deliver the care and what you require. I think your first port of call should be contacting the Local Authority and discussing the situation with them. Their funding policy will also be on their website which should (hopefully) make things a bit clearer, you can read it before contacting them.
All the best.
Does you Dad currently get Attendance Allowance? If not, you could apply for that on his behalf that could be used to fund some limited support. Home Care or Domiciliary Care as it is sometimes referred to can be paid for either privately or by the Local Authority where your Dad is, it will depend on the level of Dad's savings (for Home Care a property is not considered as part of the assets that only comes in to play for residential care). I'm assuming Dad lives in England the rules are different in Scotland (which you mentioned). The Local Authority will need to undertake a financial assessment looking at Dad's income and savings to determine what his contribution to care would be (if any). They would also undertake an assessment of needs i.e. understand what your Dad's requirments are and what level of care is required. Generally if you have savings over £23k you will have to commission and pay for the care yourself - which means you can decide on the company / person to deliver the care and what you require. I think your first port of call should be contacting the Local Authority and discussing the situation with them. Their funding policy will also be on their website which should (hopefully) make things a bit clearer, you can read it before contacting them.
All the best.
I can’t do any better than the excellent advice above, but one thing occurs to me.
once you start any intervention with a person with dementia you can run into trouble With regard to cooperation.
While you remain good friends I would be explaining to your dad that the covid virus has scared me and made me realise that if anything happened to him I would have to complete a probate form with no information as to where to start.
I would request he compiled a list of financial details.
It would not have to contain amounts if he did not want that.
So an example would be.
Bank= Nat west
Savings accounts = Halifax
savings accounts = Santander
shares = BP
ISA = Barclays
life insurance = Victoria insurance
debts= Nat west
santander credit card
mortgage =
car loan=
This may make your life easier for whatever the future brings.
wishing you well.
once you start any intervention with a person with dementia you can run into trouble With regard to cooperation.
While you remain good friends I would be explaining to your dad that the covid virus has scared me and made me realise that if anything happened to him I would have to complete a probate form with no information as to where to start.
I would request he compiled a list of financial details.
It would not have to contain amounts if he did not want that.
So an example would be.
Bank= Nat west
Savings accounts = Halifax
savings accounts = Santander
shares = BP
ISA = Barclays
life insurance = Victoria insurance
debts= Nat west
santander credit card
mortgage =
car loan=
This may make your life easier for whatever the future brings.
wishing you well.
Thanks once again.
Dad lives in Scotland. I live in Kent. I’ll look into what Attendance Allowance is but I’m not familiar with hearing that ever mentioned by dad. Regarding the savings, that I dint know. One day he gives the impression he has lots of savings and the next he sounds like he’s in the red. I will look into his local authority and find out who to contact first. Thank you.
Thank you @Weasell
I’m taking my time to approach my dad at least until I’ve done a reasonable amount of research into what needs to happen and in what order. He regularly talks about selling his house because the voices he hears clearly want him gone so they can have his house for himself. But he’s lived there almost 30 years, most of those with my mum before she passed. It’s clear he’s feeling pressured to sell and move out and believes who ever buys the house will be someone connected to the voices he hears. They were reading what he was texting to me today on his mobile and making horrible comments so he told me it wasn’t safe for him to use his phone fir a while. He has already given me power of attorney and most of where he banks etc I could find out easily myself. I don’t think he’d react well to me saying I’m worried if anything happened to him during covid so I probably won’t say that. I will probably bring stuff up the next time he suggests moving home as a way of suggesting to keep him in his home safely with someone popping in to check on him. Thank you for your reply.
Hi @SMBeach, I believe personal care is free then. But check with the local authority - initially have a look on their website the policies should be there. All the best.
The personal care element is free in Scotland -
www.gov.scot
I had free personal care for my husband and then his contribution made up the rest of our care package.
Free personal and nursing care: questions and answers
Information on the extension of free personal care for people under the age of 65 in Scotland.
www.gov.scot
I had free personal care for my husband and then his contribution made up the rest of our care package.
