Update on my dad

[Teanosugar]

I have not posted in a few weeks due to having no time. Dad continues to deteriorate and I am having problems getting people to realise this. Dad lives in Extra Care Sheltered Housing and the Warden seems to think his problems are "isolated incidences" but as she only works Monday to Friday and 8 til 4 she doesnt see a lot.

Lately dad is phoning me all the time, sometimes at weird hours, latest was 2am when I was asleep in bed, he complained I didnt answer the phone straight away! When I asked what was wrong he said I am waiting for the thing, but after 20 minutes I still had no idea what this thing was, and suggested he waited in bed. He phoned the night before saying they had not turned up to take him roller skating, which seeing as he cant even walk without a stick and falls all the time, would be an achievement to say the least.

I contacted social services last week and told them straight I am reaching breaking point being an only child, working full time, having health problems of my own and I needed more help. I had been approached by 2 residents in dads housing scheme saying they were worried about him, he is apparently roaming the corridors and common rooms at night looking for his wife, who died 7 years ago. He will not change his clothes for anybody but me, I have employed a PA one day a week, he has a cleaner another day, I go at least 5 times a week, he has carers go in morning and night for medication.

Went last week and found he had spilled about 10 packets of Laxido all over his kitchen, and he informed me he takes 6 a day, which is wrong as it is 1 a day and 2 if he has a problem. Up to recently dad was self administering these himself, all other meds are locked in a safe. I contacted his doctor and was told they would prescribe another lot and that had a label on it, and to lock them up and carers would dispense them. Sorted it all out with carers, but then found the box would not fit into the safe, so cut out the label and put it with the Laxido. Then carers left me a message on my answer phone, despite having my mobile number to say there were no GP instructions therefore they could not dispense them. As the pharmacist was closed at this time, I have had to go every day to give dad these meds, as he got constipated by not having them. Seems carers had put dad down to have these as and when required and not followed the instructions, think they might have got rid of the label so they didnt look bad. Dad got very constipated because of this. It is not the first time they have not followed instructions and regularly do not follow his care plan. ave now ordered a larger lock up medication box, and been to chemist and got a new label, put all Laxido into a plastic resealable bag with the label stuck on the front, and informed carers that they are to start giving them again, and got quite a frosty reaction, saying we cannot give without the label, which is there!!!!

So many things have happened in last few weeks that I have demanded an emergency review which will take place on Wednesday this week. I am going to ask for an extra care visit to make sure dad is having his lunch, as they make him a sandwich each morning and leave it for him, and when I get there after work, it is usually still there, with him saying he has eaten it! Dad is losing weight so this is not good.

I am also going to lay it on the line that I do not feel dad is coping, he is staring into space, not watching his tv, reading the same book over and over saying he has not read it. His short term memory has been shot for ages, but now his long term memory is also on the way out. He keeps losing things, I have had to minimise stuff in his flat to help him cope. He cannot seem to understand dates any more, though they are written on his white board daily to prompt him to the date. Time is also a problem, he cant understand simple things with time eg the hour is ok but when it is quarter to etc he cant cope. He has his tv page on the wrong days, he thinks if he has an appointment that it is every day, not in a few weeks.

Dad has had an eye test and they say his optic nerve is damaged, so now we are waiting for a hospital appointment to see what they say. I wonder if his TIAs and stroke or medication might be something to do with this?

It still feels like I am plaiting fog, and I am about to go on holiday and am worried sick about dad, so have asked his PA to do another 10 hours that week. All these costs mount up but what else can we do?

Right rant over, bed time thanks for listening.

[Chemmy]

I was offered a place for my mum in extra-care housing after Dad died, but whereas I think it's a fantastic facility for frail people or those with physical disabilities who still have a sense of time, I can see there comes a point when it no longer satisfies the needs for those with dementia.

My mum got to the stage where she needed 24/7 supervision - which is different to 24/7 care - and a residential CH was the solution I chose. I'm not suggesting your dad's at that stage yet..but he will be...and it might be a good idea to start shortlisting suitable places now before there's a crisis.

[Grannie G]

It sounds as if your dad is becoming quite vulnerable and might benefit from the security of having people with him 24/7.

I have always wondered about sheltered housing for those progressing into dementia. A couple of visits a day still leaves them with a lot of time by themselves.
What do they do when alone?
How do they occupy themselves?
Can they make their needs known?
Could they ask for help?

[Chemmy]

It could also be quite frustrating for the other residents having someone with advanced dementia living there (no disrespect to your dad, Teanosugar) if they can't escape his attentions or funny little ways. It's their home too and they've probably had no say in the decision to live alongside someone with dementia. I'm not sure I think that's fair.

As relatives it's difficult enough coping, so imagine the situation they're in.

[Teanosugar]

I was offered a place for my mum in extra-care housing after Dad died, but whereas I think it's a fantastic facility for frail people or those with physical disabilities who still have a sense of time, I can see there comes a point when it no longer satisfies the needs for those with dementia.

My mum got to the stage where she needed 24/7 supervision - which is different to 24/7 care - and a residential CH was the solution I chose. I'm not suggesting your dad's at that stage yet..but he will be...and it might be a good idea to start shortlisting suitable places now before there's a crisis.

The social worker has said unless we want to fully fund this ourselves, there are many roads we need to go down first. Funny today dad was the best he has been for a few days and I cherish those days, as they get less often. I enquired about CH and looking round and they have advised me that when we get to that stage they will be fully involved with me to choose the right place. I have been working in care for 19 years so will be the best advocate for my dad. Have just written 2 pages of notes for the meeting tomorrow, I am told the way to go is to step up the care and when they reach 4 visits a day and people still dont cope, then the next stage will progress. Dad was not diagnosed with dementia when he went into the housing scheme, although looking back it had started over 7 years ago as mum used to say he was doing silly things and forgetting a lot, but the last 18 months have been a steady decline. I would love dad to be safe and in a CH but will have to play ball with social services first, but I am noting every single phone call, visit, crisis and I am going to make sure they know each one, as when he has a problem I will contact them. I wish dad would pull his cord for help, but he phones me!!!! Oh well lets see what tomorrow brings, thanks for your comment.

[Teanosugar]

It could also be quite frustrating for the other residents having someone with advanced dementia living there (no disrespect to your dad, Teanosugar) if they can't escape his attentions or funny little ways. It's their home too and they've probably had no say in the decision to live alongside someone with dementia. I'm not sure I think that's fair.

As relatives it's difficult enough coping, so imagine the situation they're in.

I totally agree with your comment about others finding it frustrating, but they tell me they do not tell the warden and I have asked them to. The warden has told me that there are much worse people in there than my dad, but I havent seen them, I really hope that are not stuck in their flats unable to get out!!! Dad went out yesterday with his PA and had walk in park, lunch and then ice cream on way back and he had a lovely day, shame an hour later he couldnt remember it, but one thing he is doing, he is being quite rude to people, eg he saw a lady serving in the restaurant and he told her she had fat arms!!!! I spend my time when out with dad apologising and mouthing sorry beind him and signing that he has brain problems. The worst was a recent funeral when he told the grieving widow that her husband had always been a bit of a plonker!!!! arghhhhhh lol, it does help to talk, some days I can see the funny side. Thanks for your support.

[Teanosugar]

It sounds as if your dad is becoming quite vulnerable and might benefit from the security of having people with him 24/7.

I have always wondered about sheltered housing for those progressing into dementia. A couple of visits a day still leaves them with a lot of time by themselves.
What do they do when alone?
How do they occupy themselves?
Can they make their needs known?
Could they ask for help?

Dad when alone used to read and watch tv, now he seems to spend his time looking out of the window, yet when I say why not sit in garden with others, he says am not interested yet he watches them. I have found him staring at a blank wall. I get him out with me a couple of times a week, sometimes only for a short while and his PA takes him out for a day once a week, and he goes to a luncheon club (with the warden reminding him and actually knocking on his door to say its time now). Tried a day centre, he didnt like it, and he seems more confused when he goes to new places anyway, yet he goes all over with his PA and myself and loves it. Maybe it is because we are very familiar? Making needs known, well he does that to ME, and asks ME for help, he will not pull the cord to gain assistance he says it is only for if he has a problem, well he has problems all the time, still phones me!!!! To answer your questions, I do not think it is the best place to keep a person safe and looked after, but it is good for independence, which up to 6 months ago he coped with. Shall see what tomorrow brings. THanks for your support.

[Chemmy]

You sound like a very sensible person, Teanosugar Only you know what's best for your dad and you seem very much on the ball. You're right to encourage his neighbours to be honest about how he is - people often don't want to get involved or offend, but covering up for him, as you clearly know, may not be in his best interests in the longer term.

Good luck

[Teanosugar]

I have not posted in a few weeks due to having no time. Dad continues to deteriorate and I am having problems getting people to realise this. Dad lives in Extra Care Sheltered Housing and the Warden seems to think his problems are "isolated incidences" but as she only works Monday to Friday and 8 til 4 she doesnt see a lot.

Lately dad is phoning me all the time, sometimes at weird hours, latest was 2am when I was asleep in bed, he complained I didnt answer the phone straight away! When I asked what was wrong he said I am waiting for the thing, but after 20 minutes I still had no idea what this thing was, and suggested he waited in bed. He phoned the night before saying they had not turned up to take him roller skating, which seeing as he cant even walk without a stick and falls all the time, would be an achievement to say the least.

I contacted social services last week and told them straight I am reaching breaking point being an only child, working full time, having health problems of my own and I needed more help. I had been approached by 2 residents in dads housing scheme saying they were worried about him, he is apparently roaming the corridors and common rooms at night looking for his wife, who died 7 years ago. He will not change his clothes for anybody but me, I have employed a PA one day a week, he has a cleaner another day, I go at least 5 times a week, he has carers go in morning and night for medication.

Went last week and found he had spilled about 10 packets of Laxido all over his kitchen, and he informed me he takes 6 a day, which is wrong as it is 1 a day and 2 if he has a problem. Up to recently dad was self administering these himself, all other meds are locked in a safe. I contacted his doctor and was told they would prescribe another lot and that had a label on it, and to lock them up and carers would dispense them. Sorted it all out with carers, but then found the box would not fit into the safe, so cut out the label and put it with the Laxido. Then carers left me a message on my answer phone, despite having my mobile number to say there were no GP instructions therefore they could not dispense them. As the pharmacist was closed at this time, I have had to go every day to give dad these meds, as he got constipated by not having them. Seems carers had put dad down to have these as and when required and not followed the instructions, think they might have got rid of the label so they didnt look bad. Dad got very constipated because of this. It is not the first time they have not followed instructions and regularly do not follow his care plan. ave now ordered a larger lock up medication box, and been to chemist and got a new label, put all Laxido into a plastic resealable bag with the label stuck on the front, and informed carers that they are to start giving them again, and got quite a frosty reaction, saying we cannot give without the label, which is there!!!!

So many things have happened in last few weeks that I have demanded an emergency review which will take place on Wednesday this week. I am going to ask for an extra care visit to make sure dad is having his lunch, as they make him a sandwich each morning and leave it for him, and when I get there after work, it is usually still there, with him saying he has eaten it! Dad is losing weight so this is not good.

I am also going to lay it on the line that I do not feel dad is coping, he is staring into space, not watching his tv, reading the same book over and over saying he has not read it. His short term memory has been shot for ages, but now his long term memory is also on the way out. He keeps losing things, I have had to minimise stuff in his flat to help him cope. He cannot seem to understand dates any more, though they are written on his white board daily to prompt him to the date. Time is also a problem, he cant understand simple things with time eg the hour is ok but when it is quarter to etc he cant cope. He has his tv page on the wrong days, he thinks if he has an appointment that it is every day, not in a few weeks.

Dad has had an eye test and they say his optic nerve is damaged, so now we are waiting for a hospital appointment to see what they say. I wonder if his TIAs and stroke or medication might be something to do with this?

It still feels like I am plaiting fog, and I am about to go on holiday and am worried sick about dad, so have asked his PA to do another 10 hours that week. All these costs mount up but what else can we do?

Right rant over, bed time thanks for listening.

Two weeks ago dad had a big crisis, ended up in A and E, sent home (grrrrrr found out he should have been seen by physio and mental health team first), following day bad again, ended up with me in tears after being with him for 37 from 48 hours, I was tired, fed up, in tears, so I phoned up duty social worker and let him have all my frustrations! They sent out a social worker with mobility nurse, after a GP had been and said he was "at risk", and dad fell in front of mobility nurse, and they sprang into action. Dad spent 3 nights in a care home for respite, whilst I was in discussions with social workers etc, and result was, dad is now on a 6 week assessment in an EMI unit with a view to being there permanently. He continues to fall, his dementia is becoming worse day by day, but he is safe and cared for, and I feel finally that there is light at the end of my tunnel. Wont know for sure if he is funded to stay there, but as the respite and present EMI unit all agree dad cannot live independently, if they send him home, then I will go to the press, MP, anybody who can help us, plus I have already told social worker if this is not permanent, then I will with draw my help, refuse to turn out when things are bad, and they will have to deal with it all! I would find this very hard to do, as I am very close to my dad, but would do it in his "best interests", but I dont think it will get to that, as where he lives has said they cannot give him the care he so obviously needs. Have just had a few days away, was fabulous, not having to worry about dad, knowing he is cared for and safe.