Hello everyone,
I've joined here as I am getting pretty desperate/frustrated, and I'm sorry this is going to be a bit long. For the last few years my father has been displaying signs of dementia, his GP referred him for memory tests but Dad forgot to attend (oh, the irony!). His symptoms have been worsening during the past few months, but it was only when he fell down the stairs and ended up in hospital that I've managed to pin him down (figuratively) and get him assessed. He's still in a (community) hospital as they can't discharge him to his old house because there's stairs going up to the front door (amongst other issues) and so everyone's trying to get him rehoused into a sheltered bedsit ASAP...but I have concerns.
His symptoms are:
* Delusions - imagines events that haven't happened or couldn't possibly happen - like nurses pouring urine over him in the night - he has been treated for a UTI a couple of times, but the delusions happen when he's not got an infection
* Short term memory loss, including forgetting words and how to speak
* Speech problems - as above, but also lots of slurring, stammering, burbling, drooling, and has periods of being totally incoherent. HE doesn't think he has a speech problem. A speech therapist has seen him and recommended he goes for an MRI scan (she is THE ONLY PERSON to have said this, I cheered when she told me!) and sees a dementia/Parkinsons specialist
* Poor & reducing mobility - he has terrible trouble walking, cannot manage stairs at all now, sitting in a chair used to be uncomfortable but the physio has helped, difficulty sitting up from laying down, etc
* Night time incontinence - approx 50% of the time he either wets the bed or pees all over the floor. They tried padding him, but he managed to rip it off, throw it across the room, and pee all over the floor and his bed. They gave up after 2 nights.
* Mood changes - he actually spoke about ending his life the other night, that's the first time I have ever heard him say anything like that. He gets angry and aggressive, and also laughs inappropriately during a conversation
* Spacial awareness has declined, along with the associated eyesight (being able to copy a shape the exact same size as the original - he failed this)
* Sudden drowsiness - followed by sudden alertness. He's very tired a lot of the time, but the drowsiness kicks in sometimes in the middle of a sentence, his eyes roll and close, and he dozes for a minute or 2 before waking up again.
* Confusion/muddled - he sometimes doesn't understand instructions or what someone is saying, he phones me 10 times a day to ask me to bring him a pee-pot (I live 4 hours away!) and doesn't remember phoning - typically the calls are him saying "help! it's urgent!", he thinks his social worker was viewing flats for him, etc
* Tremors
* Neglect - he wasn't taking his full amount of meds when he was at home, and without carers coming in he wouldn't have been eating or washing. As it is, his bed hadn't been changed for months.
So he ended up in hospital after a fall, and they've been working with him to get his mobility going again (some improvement, he can actually stand and shuffle now). Now that he's "medically fit" they want rid of him, and an "independent living" (sheltered bedsit) has come up - So to try to secure this they've done loads of tests to prove to the housing officer it's suitable for his needs. One of the tests was the ACE-R. This - surprisingly - came back NORMAL. After yet another weekend of him being very confused, I decided to look this up. Found this forum plus w ww.ncbi.nlm.nih.gov/pubmed/16977673 (this is THE official article regarding the ACE-R). I was extremely concerned to read what the cut off points are. Anything below mid-80s is considered to be "severe impairment", yet my father scored 75 - and I'd been told this was "better than most people would have got"!!
Armed with this, I challenged the medical team about it. The dr said he had spoken to the Occupational Therapist (who had conducted the test) and in the doctor's words: "she said she thought that his score was about right for him". Horrified wasn't the word for how I felt. So I emailed all this to his social worker, his SW spoke to the OT, and the reply I got today was that "they used a different ACE-R test to the one you were looking at, there's different versions of it" ..... Disbelief, is how you can describe my emotion when I heard that.
ARE there different versions of the ACE-R? Am I being fobbed off?
Also when speaking to the SW, she said that a diagnosis won't make any difference, but HELLOOO! It would mean he would have access to the correct meds that will slow down the process, make symptoms more manageable, and hopefully fend off the point where he becomes completely lost in himself and needing round-the-clock care/attention.
Thanks for reading all thise - sorry there was a bit of a rant in there, I am just so frustrated at being told he's NORMAL, when he clearly isn't. If anyone could address my concerns (particularly about being told there are different versions of the ACE-R) I would be most grateful.
Thanks again
I've joined here as I am getting pretty desperate/frustrated, and I'm sorry this is going to be a bit long. For the last few years my father has been displaying signs of dementia, his GP referred him for memory tests but Dad forgot to attend (oh, the irony!). His symptoms have been worsening during the past few months, but it was only when he fell down the stairs and ended up in hospital that I've managed to pin him down (figuratively) and get him assessed. He's still in a (community) hospital as they can't discharge him to his old house because there's stairs going up to the front door (amongst other issues) and so everyone's trying to get him rehoused into a sheltered bedsit ASAP...but I have concerns.
His symptoms are:
* Delusions - imagines events that haven't happened or couldn't possibly happen - like nurses pouring urine over him in the night - he has been treated for a UTI a couple of times, but the delusions happen when he's not got an infection
* Short term memory loss, including forgetting words and how to speak
* Speech problems - as above, but also lots of slurring, stammering, burbling, drooling, and has periods of being totally incoherent. HE doesn't think he has a speech problem. A speech therapist has seen him and recommended he goes for an MRI scan (she is THE ONLY PERSON to have said this, I cheered when she told me!) and sees a dementia/Parkinsons specialist
* Poor & reducing mobility - he has terrible trouble walking, cannot manage stairs at all now, sitting in a chair used to be uncomfortable but the physio has helped, difficulty sitting up from laying down, etc
* Night time incontinence - approx 50% of the time he either wets the bed or pees all over the floor. They tried padding him, but he managed to rip it off, throw it across the room, and pee all over the floor and his bed. They gave up after 2 nights.
* Mood changes - he actually spoke about ending his life the other night, that's the first time I have ever heard him say anything like that. He gets angry and aggressive, and also laughs inappropriately during a conversation
* Spacial awareness has declined, along with the associated eyesight (being able to copy a shape the exact same size as the original - he failed this)
* Sudden drowsiness - followed by sudden alertness. He's very tired a lot of the time, but the drowsiness kicks in sometimes in the middle of a sentence, his eyes roll and close, and he dozes for a minute or 2 before waking up again.
* Confusion/muddled - he sometimes doesn't understand instructions or what someone is saying, he phones me 10 times a day to ask me to bring him a pee-pot (I live 4 hours away!) and doesn't remember phoning - typically the calls are him saying "help! it's urgent!", he thinks his social worker was viewing flats for him, etc
* Tremors
* Neglect - he wasn't taking his full amount of meds when he was at home, and without carers coming in he wouldn't have been eating or washing. As it is, his bed hadn't been changed for months.
So he ended up in hospital after a fall, and they've been working with him to get his mobility going again (some improvement, he can actually stand and shuffle now). Now that he's "medically fit" they want rid of him, and an "independent living" (sheltered bedsit) has come up - So to try to secure this they've done loads of tests to prove to the housing officer it's suitable for his needs. One of the tests was the ACE-R. This - surprisingly - came back NORMAL. After yet another weekend of him being very confused, I decided to look this up. Found this forum plus w ww.ncbi.nlm.nih.gov/pubmed/16977673 (this is THE official article regarding the ACE-R). I was extremely concerned to read what the cut off points are. Anything below mid-80s is considered to be "severe impairment", yet my father scored 75 - and I'd been told this was "better than most people would have got"!!
Armed with this, I challenged the medical team about it. The dr said he had spoken to the Occupational Therapist (who had conducted the test) and in the doctor's words: "she said she thought that his score was about right for him". Horrified wasn't the word for how I felt. So I emailed all this to his social worker, his SW spoke to the OT, and the reply I got today was that "they used a different ACE-R test to the one you were looking at, there's different versions of it" ..... Disbelief, is how you can describe my emotion when I heard that.
ARE there different versions of the ACE-R? Am I being fobbed off?
Also when speaking to the SW, she said that a diagnosis won't make any difference, but HELLOOO! It would mean he would have access to the correct meds that will slow down the process, make symptoms more manageable, and hopefully fend off the point where he becomes completely lost in himself and needing round-the-clock care/attention.
Thanks for reading all thise - sorry there was a bit of a rant in there, I am just so frustrated at being told he's NORMAL, when he clearly isn't. If anyone could address my concerns (particularly about being told there are different versions of the ACE-R) I would be most grateful.
Thanks again