Hello-
I just want to start out saying how helpful reading this forum has been over the last couple of years while my husband and I have negotiated my FiL's dementia. I am hoping someone might be able to help us figure out what to do next.
My FiL was diagnosed with mild/moderate Alzheimer's about 18 months ago. He was given donepezil, which has worked remarkably well to stall his symptoms; probably the worst for him was a disoriented around dates and times, but he was doing really well with that as well. He has a daily evening visit from a carer who makes sure he takes his medication, my husband speaks to him every evening and we use Wiltshire Farm Foods to make sure he has decent food on hand. We live about 150 miles away and both of us work full time; my FiL has a couple of cousins (who are also quite elderly), but no other living relatives. He has lived in the same house for 50 years and knows the neighbours and the neighbourhood well; everyone has our number and knows to call us if something goes wrong. We go down to see him about once a month.
We have noticed he's been declining lately--still remembers who we are, but he's been struggling to remember more recent events--for instance, he struggled to remember we were in France recently, he sometimes has trouble finding his keys even when they're in his pockets (apparently he has some trousers with lots of pockets and he's not always sure where he's put them), that sort of thing. My husband had a quite panicked call from the neighbours this morning (the second call in the last week), and they said that he was worked up because the carers hadn't come yet (they come in the evenings). My FiL they proceeded to go into town for his lunch (which he does most days), which worried the neighbour even more. My husband finally managed to reach him on the phone, and he said he kept waking up when it was dark (given that it's only dark for 4-5 hours a night right now, that seems unlikely) and claimed that window washers were coming at night (he also had some trouble with hallucinations before he started taking the donepezil). My husband came away with the impression that he's just not understanding time again, and can't figure out light and dark, as well as probably having hallucinations again.
We're worried that things are getting worse quite quickly, and are concerned that we might be headed for a crisis of some kind. I'm particularly worried about the possibility that he will get lost or disoriented--he lives in a fairly large city, and knows his routines around it really well, but if he were to get lost I'm really worried about how we'd find him again. My husband will be calling the memory clinic to see if we can get an appointment scheduled ASAP, but does anyone have any other suggestions about what we can/should be doing? I'm genuinely at a loss. When all this started, I advocated for moving him into sheltered accommodation in the city we live in, but he preferred to stay at home. At this point, I just don't know what we should do, or even who to ask for advice. Any ideas?
I just want to start out saying how helpful reading this forum has been over the last couple of years while my husband and I have negotiated my FiL's dementia. I am hoping someone might be able to help us figure out what to do next.
My FiL was diagnosed with mild/moderate Alzheimer's about 18 months ago. He was given donepezil, which has worked remarkably well to stall his symptoms; probably the worst for him was a disoriented around dates and times, but he was doing really well with that as well. He has a daily evening visit from a carer who makes sure he takes his medication, my husband speaks to him every evening and we use Wiltshire Farm Foods to make sure he has decent food on hand. We live about 150 miles away and both of us work full time; my FiL has a couple of cousins (who are also quite elderly), but no other living relatives. He has lived in the same house for 50 years and knows the neighbours and the neighbourhood well; everyone has our number and knows to call us if something goes wrong. We go down to see him about once a month.
We have noticed he's been declining lately--still remembers who we are, but he's been struggling to remember more recent events--for instance, he struggled to remember we were in France recently, he sometimes has trouble finding his keys even when they're in his pockets (apparently he has some trousers with lots of pockets and he's not always sure where he's put them), that sort of thing. My husband had a quite panicked call from the neighbours this morning (the second call in the last week), and they said that he was worked up because the carers hadn't come yet (they come in the evenings). My FiL they proceeded to go into town for his lunch (which he does most days), which worried the neighbour even more. My husband finally managed to reach him on the phone, and he said he kept waking up when it was dark (given that it's only dark for 4-5 hours a night right now, that seems unlikely) and claimed that window washers were coming at night (he also had some trouble with hallucinations before he started taking the donepezil). My husband came away with the impression that he's just not understanding time again, and can't figure out light and dark, as well as probably having hallucinations again.
We're worried that things are getting worse quite quickly, and are concerned that we might be headed for a crisis of some kind. I'm particularly worried about the possibility that he will get lost or disoriented--he lives in a fairly large city, and knows his routines around it really well, but if he were to get lost I'm really worried about how we'd find him again. My husband will be calling the memory clinic to see if we can get an appointment scheduled ASAP, but does anyone have any other suggestions about what we can/should be doing? I'm genuinely at a loss. When all this started, I advocated for moving him into sheltered accommodation in the city we live in, but he preferred to stay at home. At this point, I just don't know what we should do, or even who to ask for advice. Any ideas?