FiL getting worse--lives far away--what to do next?

[mungobella]

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?

 

[joggyb]

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?

This sounds rather like my dad's pattern of decline.

Certainly the memory clinic is worth pursuing. Also contact social services, and tell him you regard him as a vulnerable adult at risk because of his dementia - and see what they can do for him. You might want to get in touch with FiL's GP, too, and update him on the latest developments.

Also consider contacting the local branch of Alzheimer's Soc and AgeUK - both offer a number of services, including advice, practical help, and companionship.

In the meantime - get a tracking device for him? Several available these days of various types.

But ultimately these will only get you so far. It sounds as though it won't be long before he really needs more round-the-clock care. Sheltered accommodation probably won't be sufficient, to be perfectly honest. Depending on his funding, it's possible that you might be able to set up carers to visit, but even these ultimately aren't usually enough.

Do please consider care homes in your area. Of course he will say he doesn't want to move - nobody ever does. But once he is in a home, he will be safe, and you can visit him frequently and give him quality time.

As I say, this brings back memories of what happened to my father. I wanted to care for him, but knew with his particular symptoms (up all night, fiddling with electrics, leaving stove on, going on long walks at all hours of day/night, etc), there's no way we would have managed, even with live-in carers.

A care home local to me has proved an absolute godsend. He settled in very quickly, loves the staff, and is as content as he possibly can be in the circumstances. And I can relax knowing he is safe, secure, and well looked after, and has continuity of care, rather than lots of different carers coming from agencies.

Good luck, and keep posting. There are lots of others on here who will be along with more advice, I'm sure.

 

[mungobella]

Thank you for your thoughts @joggyb. It does sound like your father was in a similar situation. I know a care home is probably in the cards. I guess part of what I'm having trouble figuring out is when we should start thinking about that. I feel like a lot of people care for their relatives at home until they just absolutely can't anymore; we aren't really in a position to do that, or pay for round the clock care. I guess part of what I'm trying to think through at this point is how to best support him at home so he can stay there for a while longer. I have a feeling he's not going to take the transition to a care home well--he was anxious and melodramatic even before he started to have issues with dementia. But, like you, I feel like a home close to us would be a really good situation for him eventually--there are a lot of really nice places within easy walking distance, so we could see him frequently.

My husband managed to get an appointment at the memory clinic for later this week, so at least we can get some kind of professional input.

 

[joggyb]

Thank you for your thoughts @joggyb. It does sound like your father was in a similar situation. I know a care home is probably in the cards. I guess part of what I'm having trouble figuring out is when we should start thinking about that. I feel like a lot of people care for their relatives at home until they just absolutely can't anymore; we aren't really in a position to do that, or pay for round the clock care. I guess part of what I'm trying to think through at this point is how to best support him at home so he can stay there for a while longer. I have a feeling he's not going to take the transition to a care home well--he was anxious and melodramatic even before he started to have issues with dementia. But, like you, I feel like a home close to us would be a really good situation for him eventually--there are a lot of really nice places within easy walking distance, so we could see him frequently.

My husband managed to get an appointment at the memory clinic for later this week, so at least we can get some kind of professional input.

Well done on getting the memory clinic appointment - that's a good start.

To support FiL at home for the time being, I'd urge you to contact your local branch of AgeUK and Alzheimer's Soc, and get their advice and suggestions. You may also want to get social services involved to see if they can provide any interim care, too. Do look into tracking devices if you're worried about him getting lost. (For what it's worth, my dad never lost his sense of direction - but he did go out at night and expect places to be open(!), so often would be picked up by police, etc. It was definitely a major headache for us in his last few weeks at home, as we would get phone calls from the emergency services at all times of the night.)

 

[canary]

Thank you for your thoughts @joggyb. It does sound like your father was in a similar situation. I know a care home is probably in the cards. I guess part of what I'm having trouble figuring out is when we should start thinking about that. I feel like a lot of people care for their relatives at home until they just absolutely can't anymore; we aren't really in a position to do that, or pay for round the clock care. I guess part of what I'm trying to think through at this point is how to best support him at home so he can stay there for a while longer. I have a feeling he's not going to take the transition to a care home well--he was anxious and melodramatic even before he started to have issues with dementia. But, like you, I feel like a home close to us would be a really good situation for him eventually--there are a lot of really nice places within easy walking distance, so we could see him frequently.

My husband managed to get an appointment at the memory clinic for later this week, so at least we can get some kind of professional input.

Mum went into a care home about a year ago and my feeling is that if you are starting to wonder when the right time is, then its time to start looking!
Most care homes have a waiting list, so its better to decide where you would like him to go and get his name down so that it can be done in a planned way rather that due to an crisis (which is what happened to mum). If a place comes up in the home you have selected it doesnt mean that you have to take it if you still think that its too soon.