This is my story with Dementia, sorry it's long one;
My Mother has Vascular Dementia and Alzheimer's, it started on the 10th January 2016, how do I remember that? because it was my birthday. She forgot, no big deal but I called her and she didn't sound right. "I feel a bit odd" she said. That was all she could say.
I was concerned so took her to the GP that week who did the basic memory test and she didn't score very well. She asked if mum would be happy to be referred for a formal memory assessment. She refused (I don't have Power of Attorney) although I still speak to the GP on the phone. She saw her again without me and managed to get her to agree to be referred.
She got slowly worse during last year until the assessment came up in September. She had a CT scan and we got the appointment for the results, on my birthday again this year! One calendar year on.
She was at the stage where she would occasionally repeat a question, forget general things, we got her blister packs for medication last year and the odd day she would forget to take medication and we talked about getting a carer in every morning to make sure she took them. I got a lifeline fitted for her too, we redirected her post as she was conned by scammers and sadly a lot of charities (when we checked her bank we found over 40 charity Direct Debits going out each month for more that £200)
Now, I am married, in my 40's with a 10 year old son, we live 20 minutes away. I am a Firefighter working a 60 hour week, 12 hour days Monday to Friday. I don't work the stereotypical 2 days and 20 days off which a lot of people still think we do. I work 7am-7pm. My wife works 3 part time jobs. I am also an only child, and my side of the family is just me and her, that's it.
Anyway, things were just about ok until February 1st this year, Lifeline called, mum had pressed her pendant and they couldn't get her. It was 7.30pm, I jump in the car, when I get there all the lights are on. I go upstairs and find her on the floor in the bedroom. She had fallen, not remembering anything about it but it was clear she had broken something.
An ambulance arrived 2 hours later and surmised a broken hip, hospital X-ray confirmed broken femur at the very top. A 10 day stay followed and then was transferred to an intermediate care hospital where she had rehab, physio etc. This place had always had glowing reviews from everybody locally. But there were so many failings, the day after she arrived there was an outbreak of Norovirus so we couldn't go in to see her for 2 weeks, we took mum clothes in a suitcase, they lost the entire case! Mum wanted her earrings back which I had taken home while she was in A&E, so we took those at the same time which they lost too!
She had a fall the 2nd day she was in there, lump on her head and badly bruised, but we didn't get told for 5 days. It was clear they were not geared up for dementia.
Her discharge was planned for 3 weeks ago on the Monday. The previous Friday they had confirmed the package of care she was coming home with, they were supplying 3 visits a day, meal prep, meds, dressing, undressing, personal care for 4 weeks then I needed to either continue with them or choose a new company. So I took that week off work so I could be around when she came out.
First thing Monday morning, they call and tell me that the care package had been withdrawn and I had to organise a company myself. I was angry, furious and more, made a fuss, spoke to the manager but it made no difference.
They gave me a leaflet for a company called Careseekers, you call them with your requirements and they do the phoning round for you. They called 25 care agencies and only 1 had availability and after a bit of googling we found it a company with previous issues, had rebranded at the end of last year but had the same owner/contact details etc. But we had no choice.
I know now in hindsight that I should have stuck to my guns and refused to accept her back without them supplying care but my stress levels were already through the roof, she wanted to come home so we went with them.
She finally returned home this last Wednesday, with 2 zimmers, a commode for upstairs and downstairs and new rails on the stairs and in the toilet. The care started that evening and they seem to have been doing their job, I read the care log every visit.
That first afternoon she was ok, she accepted their help but the next morning she had made herself breakfast already, they noted she said she didn't want them there. She started to be non compliant, she made her lunch too.
We went round to find front and back doors open, turns out she had gone outside without her zimmer and more worryingly we don't know why and she didn't remember.
Then Good Friday I'm at a Fire Call, Lifeline called me and leave a message, mum pressed her pendant again. Luckily I got someone to cover and I zipped round there, only 5 minutes from the station. I opened the back door and was met by the smell of faeces.
I found her standing in the toilet upstairs naked from the waist down covered in faeces, the walls and floors too. She hadn't made it in time. I took her into the bathroom and cleaned her up, got her changed and then proceeded to start clearing the mess up, my wife arrived with her mother and took over as I had to get back to work.
We noted it in the log, then yesterday mum called me to say she had had another accident and can I come to clear it up, luckily the carer arrived as I was on the phone.
So it turns out she is very quickly becoming doubly incontinent. She's getting angry, irrational and has gone downhill massively since Wednesday to the point where I can't see her being able to stay there, I'm going to make calls on Tuesday when the world awakens from Easter, but I really don't know who to phone and it's getting desperate.
It's clear that there was no re assessment of her other needs before discharge, just to address her mobility issues. I have since spoken to them and have now found out she was regularly incontinent in there but they didn't feel they needed to address it as 'she would likely improve when at home' clearly that's not the case.
We noted it in the log, then yesterday mum called me to say she had had another accident and can I come to clear it up, luckily the carer arrived as I was on the phone.
So it turns out she is very quickly becoming doubly incontinent. She's getting angry, irrational and has gone downhill massively since Wednesday to the point where I can't see her being able to stay there, I'm going to make calls on Tuesday when the world awakens from Easter, but I really don't know who to phone and it's getting desperate.
It's clear that there was no re assessment of her other needs before discharge, just to address her mobility issues. I have since spoken to them and have now found out she was regularly incontinent in there but they didn't feel they needed to address it as 'she would likely improve when at home' clearly that's not the case.
I have laid awake these last 3 nights, worrying about what to do, will the phone ring?
It's already taking its toll on our family life, this weekend I see friends doing family things and we are just discussing mum, it's affecting our son. We try to discuss things when he's not around or in bed but it's not always possible. We are noticing a sudden change in his mood and behaviour . I've started getting panic attacks too.
My story doesn't end there you see, 4 years ago my dad was diagnosed with Vascular Dementia, but he turned into a monster overnight, psychotic, aggressive, violent, and hallucinating. We spent 6 months trying to look after him at home with the help of 7 carer visits a day. We got a team called the Dementia Crisis Team involved, from social services, their remit was to come into a situation, sort it and leave, being involved for a maximum of 48 hours. We had them visit everyday for 8 weeks!
Eventually mum gave in and so did the authorities and he got placed in a council funded bed in a local Dementia care home, but it had taken its toll on me. I was off work for 8 months with a breakdown, nearly lost my job (caring employer) and my wife.
So I can't let mums situation go the same way, I need help sooner, but the system has changed since dad so again I don't know who to turn to. I know they will want her to stay at home as long as possible but even though I'm not there 24/7 I can't cope much longer. I will lose everything if I'm not careful.
People keep telling me that it must be easier this time around, and all I want to do is punch them in the face.
And the 3rd part of my 'triple whammy' is that a week after my mums diagnosis, my father in law got the same diagnosis.
My Mother has Vascular Dementia and Alzheimer's, it started on the 10th January 2016, how do I remember that? because it was my birthday. She forgot, no big deal but I called her and she didn't sound right. "I feel a bit odd" she said. That was all she could say.
I was concerned so took her to the GP that week who did the basic memory test and she didn't score very well. She asked if mum would be happy to be referred for a formal memory assessment. She refused (I don't have Power of Attorney) although I still speak to the GP on the phone. She saw her again without me and managed to get her to agree to be referred.
She got slowly worse during last year until the assessment came up in September. She had a CT scan and we got the appointment for the results, on my birthday again this year! One calendar year on.
She was at the stage where she would occasionally repeat a question, forget general things, we got her blister packs for medication last year and the odd day she would forget to take medication and we talked about getting a carer in every morning to make sure she took them. I got a lifeline fitted for her too, we redirected her post as she was conned by scammers and sadly a lot of charities (when we checked her bank we found over 40 charity Direct Debits going out each month for more that £200)
Now, I am married, in my 40's with a 10 year old son, we live 20 minutes away. I am a Firefighter working a 60 hour week, 12 hour days Monday to Friday. I don't work the stereotypical 2 days and 20 days off which a lot of people still think we do. I work 7am-7pm. My wife works 3 part time jobs. I am also an only child, and my side of the family is just me and her, that's it.
Anyway, things were just about ok until February 1st this year, Lifeline called, mum had pressed her pendant and they couldn't get her. It was 7.30pm, I jump in the car, when I get there all the lights are on. I go upstairs and find her on the floor in the bedroom. She had fallen, not remembering anything about it but it was clear she had broken something.
An ambulance arrived 2 hours later and surmised a broken hip, hospital X-ray confirmed broken femur at the very top. A 10 day stay followed and then was transferred to an intermediate care hospital where she had rehab, physio etc. This place had always had glowing reviews from everybody locally. But there were so many failings, the day after she arrived there was an outbreak of Norovirus so we couldn't go in to see her for 2 weeks, we took mum clothes in a suitcase, they lost the entire case! Mum wanted her earrings back which I had taken home while she was in A&E, so we took those at the same time which they lost too!
She had a fall the 2nd day she was in there, lump on her head and badly bruised, but we didn't get told for 5 days. It was clear they were not geared up for dementia.
Her discharge was planned for 3 weeks ago on the Monday. The previous Friday they had confirmed the package of care she was coming home with, they were supplying 3 visits a day, meal prep, meds, dressing, undressing, personal care for 4 weeks then I needed to either continue with them or choose a new company. So I took that week off work so I could be around when she came out.
First thing Monday morning, they call and tell me that the care package had been withdrawn and I had to organise a company myself. I was angry, furious and more, made a fuss, spoke to the manager but it made no difference.
They gave me a leaflet for a company called Careseekers, you call them with your requirements and they do the phoning round for you. They called 25 care agencies and only 1 had availability and after a bit of googling we found it a company with previous issues, had rebranded at the end of last year but had the same owner/contact details etc. But we had no choice.
I know now in hindsight that I should have stuck to my guns and refused to accept her back without them supplying care but my stress levels were already through the roof, she wanted to come home so we went with them.
She finally returned home this last Wednesday, with 2 zimmers, a commode for upstairs and downstairs and new rails on the stairs and in the toilet. The care started that evening and they seem to have been doing their job, I read the care log every visit.
That first afternoon she was ok, she accepted their help but the next morning she had made herself breakfast already, they noted she said she didn't want them there. She started to be non compliant, she made her lunch too.
We went round to find front and back doors open, turns out she had gone outside without her zimmer and more worryingly we don't know why and she didn't remember.
Then Good Friday I'm at a Fire Call, Lifeline called me and leave a message, mum pressed her pendant again. Luckily I got someone to cover and I zipped round there, only 5 minutes from the station. I opened the back door and was met by the smell of faeces.
I found her standing in the toilet upstairs naked from the waist down covered in faeces, the walls and floors too. She hadn't made it in time. I took her into the bathroom and cleaned her up, got her changed and then proceeded to start clearing the mess up, my wife arrived with her mother and took over as I had to get back to work.
We noted it in the log, then yesterday mum called me to say she had had another accident and can I come to clear it up, luckily the carer arrived as I was on the phone.
So it turns out she is very quickly becoming doubly incontinent. She's getting angry, irrational and has gone downhill massively since Wednesday to the point where I can't see her being able to stay there, I'm going to make calls on Tuesday when the world awakens from Easter, but I really don't know who to phone and it's getting desperate.
It's clear that there was no re assessment of her other needs before discharge, just to address her mobility issues. I have since spoken to them and have now found out she was regularly incontinent in there but they didn't feel they needed to address it as 'she would likely improve when at home' clearly that's not the case.
We noted it in the log, then yesterday mum called me to say she had had another accident and can I come to clear it up, luckily the carer arrived as I was on the phone.
So it turns out she is very quickly becoming doubly incontinent. She's getting angry, irrational and has gone downhill massively since Wednesday to the point where I can't see her being able to stay there, I'm going to make calls on Tuesday when the world awakens from Easter, but I really don't know who to phone and it's getting desperate.
It's clear that there was no re assessment of her other needs before discharge, just to address her mobility issues. I have since spoken to them and have now found out she was regularly incontinent in there but they didn't feel they needed to address it as 'she would likely improve when at home' clearly that's not the case.
I have laid awake these last 3 nights, worrying about what to do, will the phone ring?
It's already taking its toll on our family life, this weekend I see friends doing family things and we are just discussing mum, it's affecting our son. We try to discuss things when he's not around or in bed but it's not always possible. We are noticing a sudden change in his mood and behaviour . I've started getting panic attacks too.
My story doesn't end there you see, 4 years ago my dad was diagnosed with Vascular Dementia, but he turned into a monster overnight, psychotic, aggressive, violent, and hallucinating. We spent 6 months trying to look after him at home with the help of 7 carer visits a day. We got a team called the Dementia Crisis Team involved, from social services, their remit was to come into a situation, sort it and leave, being involved for a maximum of 48 hours. We had them visit everyday for 8 weeks!
Eventually mum gave in and so did the authorities and he got placed in a council funded bed in a local Dementia care home, but it had taken its toll on me. I was off work for 8 months with a breakdown, nearly lost my job (caring employer) and my wife.
So I can't let mums situation go the same way, I need help sooner, but the system has changed since dad so again I don't know who to turn to. I know they will want her to stay at home as long as possible but even though I'm not there 24/7 I can't cope much longer. I will lose everything if I'm not careful.
People keep telling me that it must be easier this time around, and all I want to do is punch them in the face.
And the 3rd part of my 'triple whammy' is that a week after my mums diagnosis, my father in law got the same diagnosis.
