Hi everyone,
Finally writing my first post after spending months on here trying to find answers and reading everyone else's posts!
My 80-year-old dad started showing signs of cognitive decline over 2 years ago. I can pinpoint the exact moment when our lives had changed forever. Following a Saturday evening dinner with the extended family, I asked him a question and he just couldn't respond - he just stared blankly and it was like he was locked in his own mind/body. He soon snapped out of it but what followed in the next few days/weeks was progressive left-sided involuntary jerking movement involving his leg, arm, head and continuous finger clicking. There were also the unpredictable emotional outbursts - he would just burst into tears in complete despair or angrily shout at me when he couldn't hear me on the intercom to let me into the flat.
I knew something was seriously wrong so I took him to a&e where he was admitted under neurology care for 10 days. He was scanned from head to toe and had every assessment you could imagine - CT, MRI, EEG, lumbar puncture, full body PET, blood tests etc. The results of these were essentially normal apart from the MRI which showed a 'mature lacunar infarct involving the head of the left caudate nucleus' in his brain. During his hospital stay, the neurology team also confirmed that due to a concerning MOCA score of 17/30 and delirium on admission, a memory clinic assessment would be required at this point. The involuntary movement was diagnosed as 'dyskensia' and he was soon discharged and given Tetrabenazine to manage this. Thankfully he responded to the medication but the memory clinic assessment followed and to cut a long story short, he was diagnosed with 'Mild Cognitive Impairment.'
Between then and now, there has definitely been a decline in his cognition/behaviour. He has had three falls, two of which resulted in him falling on his face whilst trying to run for the bus and after the most recent fall, we received a phone call from the paramedics saying that he had been found unconscious after again 'running for a bus.' My mum and I thought he had gone to take the waste/recycling downstairs but when he had disappeared for longer than 10 mins, we started to worry. Once the a&e ordeal was over, I asked him why he was 'running for the bus' and he gave me three different accounts!
It doesn't take much for him to lose his temper and on a few occasions, although he has never laid a hand on my mum and I, his outbursts would leave us both shaken so I often play referee and ask them both to go into separate rooms. The finger clicking and left sided body movements have returned with a vengeance. He cannot sit still and gets incredibly restless. He taps his foot and fidgets constantly and I can even hear this tapping in the next room. He has recently started developing cramps/spasms in his left leg which come out of nowhere and can be agonising for him. Although these episodes don't last long, he once banged the back of his head against the wall during one of these episodes which was frightening.
Bedtimes have become very stressful - he is often in and out of the bedroom three or four times doing peculiar things before finally settling down but when he does fall asleep, he is often sleep talking - and then he is up and about again in the middle of night, often having a snack or getting up to watch TV. He has also on many occasions left taps, bathroom lights and sometimes even the stove on so my mum and I will always get up to check that everything is switched off. My mum in particular is exhausted. I discovered a few days ago that he had not been taking any of his medication (he was previously very good at this) so have now organised his tablets into a weekly pill dispenser so we can all keep track - this has worked really well and I'm noticing that his movements have calmed down slightly.
We have another memory clinic assessment on 18th January. In my heart I already know he has dementia but I just want a formal diagnosis so we can move on and prepare ourselves for what's to come - in the best way possible. My priority for my parents at the moment is getting them re-housed. They are currently in a top floor council flat with no lift and my dad finds it difficult to walk unaided. I spoke to the housing officer who said they are at 'the top of the list' in terms of re-housing priority but the pandemic has really slowed this progress down. Can anyone offer advice on what I can do to strengthen my case and push this along? I assume I'd need to wait for his formal memory clinic assessment/diagnosis but I'd like to get the ball rolling before then. Is it worth setting up an appointment with the CAB? What other support can you recommend? And on another note, does anyone have any tips on trying to encourage a good night's sleep? I know that it's not a 'one size fits all' solution but any insight/advice would be very much appreciated!
Thank you and sorry for the essay!
Finally writing my first post after spending months on here trying to find answers and reading everyone else's posts!
My 80-year-old dad started showing signs of cognitive decline over 2 years ago. I can pinpoint the exact moment when our lives had changed forever. Following a Saturday evening dinner with the extended family, I asked him a question and he just couldn't respond - he just stared blankly and it was like he was locked in his own mind/body. He soon snapped out of it but what followed in the next few days/weeks was progressive left-sided involuntary jerking movement involving his leg, arm, head and continuous finger clicking. There were also the unpredictable emotional outbursts - he would just burst into tears in complete despair or angrily shout at me when he couldn't hear me on the intercom to let me into the flat.
I knew something was seriously wrong so I took him to a&e where he was admitted under neurology care for 10 days. He was scanned from head to toe and had every assessment you could imagine - CT, MRI, EEG, lumbar puncture, full body PET, blood tests etc. The results of these were essentially normal apart from the MRI which showed a 'mature lacunar infarct involving the head of the left caudate nucleus' in his brain. During his hospital stay, the neurology team also confirmed that due to a concerning MOCA score of 17/30 and delirium on admission, a memory clinic assessment would be required at this point. The involuntary movement was diagnosed as 'dyskensia' and he was soon discharged and given Tetrabenazine to manage this. Thankfully he responded to the medication but the memory clinic assessment followed and to cut a long story short, he was diagnosed with 'Mild Cognitive Impairment.'
Between then and now, there has definitely been a decline in his cognition/behaviour. He has had three falls, two of which resulted in him falling on his face whilst trying to run for the bus and after the most recent fall, we received a phone call from the paramedics saying that he had been found unconscious after again 'running for a bus.' My mum and I thought he had gone to take the waste/recycling downstairs but when he had disappeared for longer than 10 mins, we started to worry. Once the a&e ordeal was over, I asked him why he was 'running for the bus' and he gave me three different accounts!
It doesn't take much for him to lose his temper and on a few occasions, although he has never laid a hand on my mum and I, his outbursts would leave us both shaken so I often play referee and ask them both to go into separate rooms. The finger clicking and left sided body movements have returned with a vengeance. He cannot sit still and gets incredibly restless. He taps his foot and fidgets constantly and I can even hear this tapping in the next room. He has recently started developing cramps/spasms in his left leg which come out of nowhere and can be agonising for him. Although these episodes don't last long, he once banged the back of his head against the wall during one of these episodes which was frightening.
Bedtimes have become very stressful - he is often in and out of the bedroom three or four times doing peculiar things before finally settling down but when he does fall asleep, he is often sleep talking - and then he is up and about again in the middle of night, often having a snack or getting up to watch TV. He has also on many occasions left taps, bathroom lights and sometimes even the stove on so my mum and I will always get up to check that everything is switched off. My mum in particular is exhausted. I discovered a few days ago that he had not been taking any of his medication (he was previously very good at this) so have now organised his tablets into a weekly pill dispenser so we can all keep track - this has worked really well and I'm noticing that his movements have calmed down slightly.
We have another memory clinic assessment on 18th January. In my heart I already know he has dementia but I just want a formal diagnosis so we can move on and prepare ourselves for what's to come - in the best way possible. My priority for my parents at the moment is getting them re-housed. They are currently in a top floor council flat with no lift and my dad finds it difficult to walk unaided. I spoke to the housing officer who said they are at 'the top of the list' in terms of re-housing priority but the pandemic has really slowed this progress down. Can anyone offer advice on what I can do to strengthen my case and push this along? I assume I'd need to wait for his formal memory clinic assessment/diagnosis but I'd like to get the ball rolling before then. Is it worth setting up an appointment with the CAB? What other support can you recommend? And on another note, does anyone have any tips on trying to encourage a good night's sleep? I know that it's not a 'one size fits all' solution but any insight/advice would be very much appreciated!
Thank you and sorry for the essay!
