Hello. Dad has Alzheimer’s. Also diagnosed with Late Onset Paranoid Schizophrenia. Dads 80 and doesn’t accept the schizophrenia diagnosis and I’m not entirely sure I do either as I know others with Alzheimer’s hear voices and are suspicious of others also. Dads voices however, are nasty threatening voices which cause him huge distress as he believes there’s a wider ‘gang’ involved with his neighbours and that they make their living out of criminal activity. This gang (voices), he’s never actually met or seen anyone, are aware that he knows of their criminal doings and so see dad as a threat and therefor want him gone. This is what is in dads head. He hears them discussing how they are going to ‘lift’ him in the night etc. Take his home from him. He’s obsessed that I get the deeds of his house to find out if he owns his house. He talks as if the ‘gang’ are in his home watching with hidden cameras. He had hallucinations seeing his dad who died 50 years ago and son (my younger brother) who doesn’t live close by, in the mirror and believes the gang somehow made that happen because they are very clever. He hears voices in the phone when I speak with him and asks me if I can hear. He’s heard them when I’ve been sat with him in the lounge and car. But still believes I can’t hear because obviously the voices aren’t stupid. They’re not going to allow me to hear because they want dad to look like he’s going crazy. In a nutshell, he feels unsafe and threatened in his own home. He bathed in the dark for a while hoping the voices wouldn’t see him because they often laugh at his old body and make derogatory comments about his toilet ‘accidents’ (bowel incontinence). This has led to him going long periods without bathing and not wearing incontinence pants because the voices laugh loudly and call him a baby and say things like ‘he’s dirty’. It’s heart breaking.
Dad is in denial that the voices don’t exist. He says if the voices don’t exist then that would mean he really is totally ‘off his head’. He’s an intelligent man and a deep thinker naturally, before his Illness and always looking for explanations. Dad being mentally ill isn’t an explanation he can accept. He says if that’s true and the voices really don’t exist then he might as well be in a straight jacket as that would mean he was nuts and he knows he isn’t. He’s worse at night understandably as it’s dark and quiet so he hears the slightest sound and gets suspicious. I visited and slept at dads all week and he was up all night doing stuff. Fumbling around through clutter. I felt unsafe.
Unfortunately I am dads only carer (from 500 miles away) apart from social services sending carers every day for half an hour and he really enjoys that. This has only been in place for the last week. He also has a cleaner once a week. A barber every 4 weeks. A chiropodist every 6 weeks. A good handyman who helps out but is obviously busy. I live 500 miles away and have put all this support in place. Dad pays for it all as I control dads finances. I have POA. I do dads online shopping and have it delivered every week. My brother lives just 6 miles from dad and refuses to get involved on any level due to a lifetime of difficulties he’s had with dad. I don’t speak to him now as I’ve been left as a single parent to 3 children, 2 dogs I can’t just up and leave. I have to make arrangements for all and at a price. So I can’t just drop things and take the 500 mile trip to pop in on dad although I did do that once because my brother wouldn’t. Even on my first holiday abroad with the children in 5 years, I messaged my brother to say dads boiler had broken and could he arrange engineers etc. I didn’t ask him to visit dad. He said no and I was left to deal with that while on holiday.
I also am self employed and work from home where my customers visit daily. Dad can’t possibly live with us. He got himself into trouble with a neighbour and ended up in court (at the start of dads mental ill health) which resulted in him driving all the 500 miles and landing on my doorstep. He ended up staying just over a year and it was the worst year of my life and that of the children. We didn’t know it then but dad was already showing signs of Alzheimer’s. Eg: he’d tell me he was going back to Scotland so I’d tell the children. He’d pack the car, then come into the house and say he had to do some more work on the court case first. The children had come to the door to say goodbye but the work he had to do on the court case went on for the rest of the day while the children and I waited for him to say he was off now. This pattern of behaviour went on for months to the point that the children stopped believing me every time I said me grandad will only be here another week or 2, and it becoming 6 etc etc. He moved into my house and took over my home filling it with his own stuff as if he was moving in or at least planning on staying as long as he felt he needed to whilst dealing with a court case back in Scotland and filling my house with a constant thick atmosphere which was him ‘thinking and concentrating’ in complete silence whilst he ran up huge legal bills. As I say, I was only just slowly learning that something wasn’t right with him. Plus his behaviour and personality has always been that, (deep thinker, atmosphere) just more pronounced and more difficult to live with. I wasn’t working during that time as this was about 6 years ago.
I recently made the mistake of buying dad a dementia easy to use phone as he struggled with his house phone. Now I’ve made it so easy for him that he calls me 20 times or more a day. Often to tell me nothing worthwhile. For example the exact location of his microwave in his garden awaiting to be picked up. Precise details and measurements to the inch from the wall, from the path, from the gate and whether you were facing north or south etc. detail you would never imagine and completely unecessary. His voice messages fill my phone when I don’t answer.
I’m exhausted. I’m sure you’re exhausted if you got this far reading. Dad has only just started Donezepil. He’s never really started any medication because there’s been nobody there to make sure he takes it. Finally now we have carers but only thanks to a doctor contacting social services as they were not doing anything when it came from me. Dads only been on medication for one week so early days.
Everyone says dad is a lovely man. Such a gentleman. Very chatty. And that’s all true. He is. But not always to me. He can be. But usually he’s just controlling whether he means to be or not. He believes he’s right about most things, especially when it comes to anything about him or his needs. He’s demanding. And he affects the atmosphere in a room when he’s there. I’d say he’s always affected the atmosphere in a room by his presence and I’ve always felt like a child around him. It feels like he still believes he’s somehow in charge of what I do or don’t do etc. He can be manipulative and he’s draining. I know he’d be devastated to hear me say these things because I honestly believe that he really doesn’t see that he’s the complete opposite of the type of person he believes he is. He has anger issues. Yet he’s said to me one thing he’s never been good at is showing when he’s angry and just putting up with stuff from people etc. yet all I see is real anger. Like thumping my table with his fists right in front of my face to get his point across.
I’ve seen him highly distressed pulling at his hair and making horrendous squealing sounds (like a mad man) out of sheer frustration and anger when I try to make him see logic etc. especially regarding the voices.
I dont feel safe staying at his home overnight if I visit. Because I think he’d forget I was there and think I was an intruder. His home has become cluttered and he’s started rearranging furniture. Cutting it in half to make something else. He has an office that is just a dumping room. It’s horrendous. I never want to visit him as it costs about a thousand pounds to do so once I factor in dog care, hotel, transport etc. and he argues and falls out with me and stops me progressing things when I visit or undoing all my hard work once I return to England. He holds me back and proving to be a difficult man to help. He falls out with so many people that nobody wants to help him. My brother included. (I have 2 brothers. The one that lives close to him does not want to help or visit at all).
I know dad would be healthier and happier if he had more company to distract him from voices and loneliness and I’ve considered getting a private carer to spend more time with him. Perhaps take him to the memory clinic etc. I’ve tried contacting the specialist Dementia care he is meant to get each week at 2hrs a week for 12 weeks but so far nobody’s responded to my emails. I thought of a live in carer but thought who in their right mind would want to live with him. Let alone in clutter. And how expensive would that be.
I’ve looked at care homes down here in England thinking he could be in a Carehome here rather than Scotland where I can at least pop in and check on him or take him out for the day or have him over for Sunday dinner. Can’t say I’ve seen much ‘care’ in the care homes I’ve visited. Or much interaction between residents. Just old people wandering around by themselves looking lost and frightened. So if it has to be a care home I want it to be somewhere I can give him some relief from. I couldn’t do that if he went to one in Scotland.
I know this was a loooong post. I don’t expect many if anyone to read it all. But I just wanted to write down what I’m going through as it’s clear nobody else does. Friends do. My brother clearly doesn’t.
If you did read it. Thank you.
Dad is in denial that the voices don’t exist. He says if the voices don’t exist then that would mean he really is totally ‘off his head’. He’s an intelligent man and a deep thinker naturally, before his Illness and always looking for explanations. Dad being mentally ill isn’t an explanation he can accept. He says if that’s true and the voices really don’t exist then he might as well be in a straight jacket as that would mean he was nuts and he knows he isn’t. He’s worse at night understandably as it’s dark and quiet so he hears the slightest sound and gets suspicious. I visited and slept at dads all week and he was up all night doing stuff. Fumbling around through clutter. I felt unsafe.
Unfortunately I am dads only carer (from 500 miles away) apart from social services sending carers every day for half an hour and he really enjoys that. This has only been in place for the last week. He also has a cleaner once a week. A barber every 4 weeks. A chiropodist every 6 weeks. A good handyman who helps out but is obviously busy. I live 500 miles away and have put all this support in place. Dad pays for it all as I control dads finances. I have POA. I do dads online shopping and have it delivered every week. My brother lives just 6 miles from dad and refuses to get involved on any level due to a lifetime of difficulties he’s had with dad. I don’t speak to him now as I’ve been left as a single parent to 3 children, 2 dogs I can’t just up and leave. I have to make arrangements for all and at a price. So I can’t just drop things and take the 500 mile trip to pop in on dad although I did do that once because my brother wouldn’t. Even on my first holiday abroad with the children in 5 years, I messaged my brother to say dads boiler had broken and could he arrange engineers etc. I didn’t ask him to visit dad. He said no and I was left to deal with that while on holiday.
I also am self employed and work from home where my customers visit daily. Dad can’t possibly live with us. He got himself into trouble with a neighbour and ended up in court (at the start of dads mental ill health) which resulted in him driving all the 500 miles and landing on my doorstep. He ended up staying just over a year and it was the worst year of my life and that of the children. We didn’t know it then but dad was already showing signs of Alzheimer’s. Eg: he’d tell me he was going back to Scotland so I’d tell the children. He’d pack the car, then come into the house and say he had to do some more work on the court case first. The children had come to the door to say goodbye but the work he had to do on the court case went on for the rest of the day while the children and I waited for him to say he was off now. This pattern of behaviour went on for months to the point that the children stopped believing me every time I said me grandad will only be here another week or 2, and it becoming 6 etc etc. He moved into my house and took over my home filling it with his own stuff as if he was moving in or at least planning on staying as long as he felt he needed to whilst dealing with a court case back in Scotland and filling my house with a constant thick atmosphere which was him ‘thinking and concentrating’ in complete silence whilst he ran up huge legal bills. As I say, I was only just slowly learning that something wasn’t right with him. Plus his behaviour and personality has always been that, (deep thinker, atmosphere) just more pronounced and more difficult to live with. I wasn’t working during that time as this was about 6 years ago.
I recently made the mistake of buying dad a dementia easy to use phone as he struggled with his house phone. Now I’ve made it so easy for him that he calls me 20 times or more a day. Often to tell me nothing worthwhile. For example the exact location of his microwave in his garden awaiting to be picked up. Precise details and measurements to the inch from the wall, from the path, from the gate and whether you were facing north or south etc. detail you would never imagine and completely unecessary. His voice messages fill my phone when I don’t answer.
I’m exhausted. I’m sure you’re exhausted if you got this far reading. Dad has only just started Donezepil. He’s never really started any medication because there’s been nobody there to make sure he takes it. Finally now we have carers but only thanks to a doctor contacting social services as they were not doing anything when it came from me. Dads only been on medication for one week so early days.
Everyone says dad is a lovely man. Such a gentleman. Very chatty. And that’s all true. He is. But not always to me. He can be. But usually he’s just controlling whether he means to be or not. He believes he’s right about most things, especially when it comes to anything about him or his needs. He’s demanding. And he affects the atmosphere in a room when he’s there. I’d say he’s always affected the atmosphere in a room by his presence and I’ve always felt like a child around him. It feels like he still believes he’s somehow in charge of what I do or don’t do etc. He can be manipulative and he’s draining. I know he’d be devastated to hear me say these things because I honestly believe that he really doesn’t see that he’s the complete opposite of the type of person he believes he is. He has anger issues. Yet he’s said to me one thing he’s never been good at is showing when he’s angry and just putting up with stuff from people etc. yet all I see is real anger. Like thumping my table with his fists right in front of my face to get his point across.
I’ve seen him highly distressed pulling at his hair and making horrendous squealing sounds (like a mad man) out of sheer frustration and anger when I try to make him see logic etc. especially regarding the voices.
I dont feel safe staying at his home overnight if I visit. Because I think he’d forget I was there and think I was an intruder. His home has become cluttered and he’s started rearranging furniture. Cutting it in half to make something else. He has an office that is just a dumping room. It’s horrendous. I never want to visit him as it costs about a thousand pounds to do so once I factor in dog care, hotel, transport etc. and he argues and falls out with me and stops me progressing things when I visit or undoing all my hard work once I return to England. He holds me back and proving to be a difficult man to help. He falls out with so many people that nobody wants to help him. My brother included. (I have 2 brothers. The one that lives close to him does not want to help or visit at all).
I know dad would be healthier and happier if he had more company to distract him from voices and loneliness and I’ve considered getting a private carer to spend more time with him. Perhaps take him to the memory clinic etc. I’ve tried contacting the specialist Dementia care he is meant to get each week at 2hrs a week for 12 weeks but so far nobody’s responded to my emails. I thought of a live in carer but thought who in their right mind would want to live with him. Let alone in clutter. And how expensive would that be.
I’ve looked at care homes down here in England thinking he could be in a Carehome here rather than Scotland where I can at least pop in and check on him or take him out for the day or have him over for Sunday dinner. Can’t say I’ve seen much ‘care’ in the care homes I’ve visited. Or much interaction between residents. Just old people wandering around by themselves looking lost and frightened. So if it has to be a care home I want it to be somewhere I can give him some relief from. I couldn’t do that if he went to one in Scotland.
I know this was a loooong post. I don’t expect many if anyone to read it all. But I just wanted to write down what I’m going through as it’s clear nobody else does. Friends do. My brother clearly doesn’t.
If you did read it. Thank you.
