My first post here so please forgive any gaps in protocol. I'm afraid this may be a long messsage because I've been unable to find anyone to really talk to, so I am rather unloading the whole picture.
My mother is mid 80s and her difficulties have been - are being- caused by a combination of vascular and Alzheimers disease. For 5-6 years in the first phase, Mum was able to be supported in her own home by a care package, regular family visits and wonderful neighbours.
At the start of this year, triggered by another series of TIAs, Mum's condition deteriorated markedly with hallucinations, fear, almost paranoia, of most people, places and situations caused by a failure to recognise things and short term memory loss. She finds it very difficult to process incoming speech and cannot retain written text. Unless prompted, she doesn't remember to eat or drink or has sudden cravings where she will drink or eat unpalatable things. Mum alternates between refusing to move from a space she recognises because she is afraid of outside danger and noises - and running away from that same place because she perceives danger in it. I can never predict which one of the last two will happen. She still recognises me but is getting hazy about other family members without her 'family book'.
Mum had a spell in hospital, when her delusions were particularly bad; a week where Social services/ Mental Health Team tried a 'return to home' package with daily visits and night care but as Mom was convinced the 'danger' was waiting round the corner to come into her home, she 'escaped' from the house at every opportunity. So the Team re-admitted her to the same ward but this time for 'assessment' - and as it was a busy ward, she just sat there. Food came. If she ate any - all well and good. If not - the food went and she just pined and cried. So I decided to bring her from her neighbourhood to me and as they were keen to free a bed, it was agreed.
This next bit is where I still feel low. Living with me failed because I couldn't help Mum cope with my household of 4 children ( now young 20-somethings) and our general coming and goings. I got cover at school, cut my work down to two mornings, arranged for care to come in and, although the kids were gentle and patient, and although everyone moved around to make Mum a quiet space, I will be honest, I couldn't make her feel any safer with me there. The wind blowing in the hedge upset her. Traffic sounds frightened her. No-one could open the kitchen door or close the fridge sharply. We couldn't have tv or music, even in the kids' rooms without it being a repeated source of anxiety and as Mum doesn't have a day/night body clock, she would wander in and out on all of us and be taken back to bed repeatedly until she fell asleep and we'd be in a pyjama'd huddle in the kitchen.
And what I hadn't realised until then was that her anger and frustration would be directed at me or she would single a grandchild out for disliking. Until then, I'd sympathised a little or deflected her negativity about her care and hospital staff. Now I was suddenly the 'evil incarnate' and the grandchild, she had formerly loved, couldn't do anything right. I know we all deal with this at some point but I found it very hard and my natural reaction was to shield him, even though he were old enough to deal with it. I'M old enough to deal with it but it doesn't make it easier! I told myself and all my children that the person talking wasn't the Gran they knew but a distressed and frightened person.
Anyway, I have to tell you I didn't cope and that 'evil incarnate' arranged a care placement for Mum in a secure EMI unit 8 weeks ago. The staff care for and address the patients with affection and respect. She has her own room which overlooks a quiet corner of the garden where there is little disturbing movement. Mom has some of the paintings she has done on the walls and various familiar things from home. She has gained weight and is physically clean. She recognises the key staff and will walk with them to the dining room for meals and for coffee.
However Mom refuses to leave her room at other times so she sits there and completely refuses to use the resident's lounge area. Every external sound alarms her and she is afraid of other ambulatory residents, who sometimes wander into her room. As bedroom doors are generally locked during certain periods of the day, my Mother's unlocked room with her inside it, is constantly something new for the other residents to explore.
Mum's reaction to their intrusion is 'to repel all Boarders' and try to push them back out despite being frail. There have been a couple of occasions where they have pushed back and this constitutes what the staff call an 'incident' as potentially a fall might occur. I got the impression that 'another placement ' for Mum may follow a number of 'incidents'.
However the staff do seem to be at a loss as to what to do about my mother's security because they can't lock her in her room and she is unable to operate the door's security device as her hand strength is impaired by her strokes. They see her as the innocent party but she doesn't fit into their pattern of spending her days in the resident's lounge.
I visit Mum for one day a week as I'm now back at school and it is a five hour round driving trip. Her neighbours call on a rota, which is very kind as they are equally elderly. Every visit to Mum finds her in a tearful and anxious mood, which becomes angry and accusatory when I leave, so I can't say she is any happier there than she was with me or at home. She has forgotten the difficulty she had living in both places, so her plea is for me to either take her 'home' or to my home.
Each visit, when she becomes calm, I walk her round the lounge, the gardens or sit with Mum in the dining room over coffee for habituation and if other residents come over, Mum will tolerate them at the table for so long, then she needs her room. Worryingly on this last visit, we walked round the gardens and when we came back in, she didn't recognise her room as 'her' room and that took a lot of reassurance. Of course, when we left (My boys help with visits quite often.), Mum became distressed again.
I don't know what the answer is...if there is an answer or a right way? She seems to be in a good place. Will she get used to being there? Will she eventually cope with the other people? There doesn't appear to be a lot of conversation or stimulation but then, Mum finds that hard anyway. Should I be satisfied that Mum is clean, fed, warm and (almost)secure? Can I make her quality of life better? We take in flowers, a little fruit, tactile things, pictures, short poems. She has had medication for anxiety but it has had a very short-lived effect. From what I've read, it looks like a long spiralling path with things mentally and physically not getting any better, so her current quality of life is always the best thing.
All I know is that I sit here and she sits there and I worry that she is crying.
Thank you to anyone, who has given their time to read this far.
With best wishes.
My mother is mid 80s and her difficulties have been - are being- caused by a combination of vascular and Alzheimers disease. For 5-6 years in the first phase, Mum was able to be supported in her own home by a care package, regular family visits and wonderful neighbours.
At the start of this year, triggered by another series of TIAs, Mum's condition deteriorated markedly with hallucinations, fear, almost paranoia, of most people, places and situations caused by a failure to recognise things and short term memory loss. She finds it very difficult to process incoming speech and cannot retain written text. Unless prompted, she doesn't remember to eat or drink or has sudden cravings where she will drink or eat unpalatable things. Mum alternates between refusing to move from a space she recognises because she is afraid of outside danger and noises - and running away from that same place because she perceives danger in it. I can never predict which one of the last two will happen. She still recognises me but is getting hazy about other family members without her 'family book'.
Mum had a spell in hospital, when her delusions were particularly bad; a week where Social services/ Mental Health Team tried a 'return to home' package with daily visits and night care but as Mom was convinced the 'danger' was waiting round the corner to come into her home, she 'escaped' from the house at every opportunity. So the Team re-admitted her to the same ward but this time for 'assessment' - and as it was a busy ward, she just sat there. Food came. If she ate any - all well and good. If not - the food went and she just pined and cried. So I decided to bring her from her neighbourhood to me and as they were keen to free a bed, it was agreed.
This next bit is where I still feel low. Living with me failed because I couldn't help Mum cope with my household of 4 children ( now young 20-somethings) and our general coming and goings. I got cover at school, cut my work down to two mornings, arranged for care to come in and, although the kids were gentle and patient, and although everyone moved around to make Mum a quiet space, I will be honest, I couldn't make her feel any safer with me there. The wind blowing in the hedge upset her. Traffic sounds frightened her. No-one could open the kitchen door or close the fridge sharply. We couldn't have tv or music, even in the kids' rooms without it being a repeated source of anxiety and as Mum doesn't have a day/night body clock, she would wander in and out on all of us and be taken back to bed repeatedly until she fell asleep and we'd be in a pyjama'd huddle in the kitchen.
And what I hadn't realised until then was that her anger and frustration would be directed at me or she would single a grandchild out for disliking. Until then, I'd sympathised a little or deflected her negativity about her care and hospital staff. Now I was suddenly the 'evil incarnate' and the grandchild, she had formerly loved, couldn't do anything right. I know we all deal with this at some point but I found it very hard and my natural reaction was to shield him, even though he were old enough to deal with it. I'M old enough to deal with it but it doesn't make it easier! I told myself and all my children that the person talking wasn't the Gran they knew but a distressed and frightened person.
Anyway, I have to tell you I didn't cope and that 'evil incarnate' arranged a care placement for Mum in a secure EMI unit 8 weeks ago. The staff care for and address the patients with affection and respect. She has her own room which overlooks a quiet corner of the garden where there is little disturbing movement. Mom has some of the paintings she has done on the walls and various familiar things from home. She has gained weight and is physically clean. She recognises the key staff and will walk with them to the dining room for meals and for coffee.
However Mom refuses to leave her room at other times so she sits there and completely refuses to use the resident's lounge area. Every external sound alarms her and she is afraid of other ambulatory residents, who sometimes wander into her room. As bedroom doors are generally locked during certain periods of the day, my Mother's unlocked room with her inside it, is constantly something new for the other residents to explore.
Mum's reaction to their intrusion is 'to repel all Boarders' and try to push them back out despite being frail. There have been a couple of occasions where they have pushed back and this constitutes what the staff call an 'incident' as potentially a fall might occur. I got the impression that 'another placement ' for Mum may follow a number of 'incidents'.
However the staff do seem to be at a loss as to what to do about my mother's security because they can't lock her in her room and she is unable to operate the door's security device as her hand strength is impaired by her strokes. They see her as the innocent party but she doesn't fit into their pattern of spending her days in the resident's lounge.
I visit Mum for one day a week as I'm now back at school and it is a five hour round driving trip. Her neighbours call on a rota, which is very kind as they are equally elderly. Every visit to Mum finds her in a tearful and anxious mood, which becomes angry and accusatory when I leave, so I can't say she is any happier there than she was with me or at home. She has forgotten the difficulty she had living in both places, so her plea is for me to either take her 'home' or to my home.
Each visit, when she becomes calm, I walk her round the lounge, the gardens or sit with Mum in the dining room over coffee for habituation and if other residents come over, Mum will tolerate them at the table for so long, then she needs her room. Worryingly on this last visit, we walked round the gardens and when we came back in, she didn't recognise her room as 'her' room and that took a lot of reassurance. Of course, when we left (My boys help with visits quite often.), Mum became distressed again.
I don't know what the answer is...if there is an answer or a right way? She seems to be in a good place. Will she get used to being there? Will she eventually cope with the other people? There doesn't appear to be a lot of conversation or stimulation but then, Mum finds that hard anyway. Should I be satisfied that Mum is clean, fed, warm and (almost)secure? Can I make her quality of life better? We take in flowers, a little fruit, tactile things, pictures, short poems. She has had medication for anxiety but it has had a very short-lived effect. From what I've read, it looks like a long spiralling path with things mentally and physically not getting any better, so her current quality of life is always the best thing.
All I know is that I sit here and she sits there and I worry that she is crying.
Thank you to anyone, who has given their time to read this far.
With best wishes.
