Hello, I have just joined today, after having had a visit from the a representative of the Alzheimers Society, who gave me the details of this talking point. We have been going through a very tough time of late, so I thought I would talk about some of this, share it with people who understand the frustrations! My mother is 91 and lives with us. She had been living in California and first showed signs of a problem when she failed her compulsory over 80 yearly driving test when she was 83. She failed it three times in succession, so that was the end of her driving license and her independence. She became very anxious and worried, and isolated after that, and decided to sell up and move back to England to be near us. She came back in 2004 and moved in with us a year later. She was diagnosed with Alzheimers in 2005, and was prescribed Aricept, and we all managed quite well for some time. At first she could heat up prepared meals in the microwave, walk about the house with her walker and see to all her own hygiene needs. She went to a luncheon club, day care on another day, had a befriender on another day, and so on. She has a lovely nature, and used to knit happily and watch tv and enjoy it. She read too, the first chapter of lots of books! Once she knitted wonderful garments, but latterly she was happy just knitting "scarves". Her decline was slow, gradually we had to take over tasks, served all her food, had a wet room installed so that I could shower her, and a year ago the knitting went. However we continued to cope until January this year when she had a minor stroke.She was admitted to hospital, and seemed to recover from left sided weakness within a week, so she was transferred to a community hospital for rehabilitation. Unfortunately the rehabilitation did not work, she was frightened of the hoist machines the staff used, and she had painful arthritic knees anyway, so she panicked whenever staff tried to stand her up. So understandably they gave up. Once they did however it took another 3 weeks to order a hoist for us to use at home, so in all she was in hospital for 2 months, so by then she was never going to recover the use of her legs. this was a whole new ball game for us, as her level of dependence had increased manifold. She wanted to be at home and we wanted to continue to care for her, but it has been hard. I should say that my husband and I are both semi retired, both work 2 1/2 days a week. One of us is at home everyday but Thursdays when we are both at work. We have carers coming in for 3 visits on that day, and on Tues and Wed mornings when I am at work, to shower her. The main problem has been not the physical work of caring but her mental distress. Cognitively she has deteriorated faster since she lost her mobility and any independence, then at any other point during the last seven years. She feels so distressed and isolated that she cannot walk, and wants constant attention and reassurance. She calls out "help" constantly. Sometimes she wants to go to the loo, other times she is frightened by the tv, or she just wants to see if anyone is there. She feels lost, she no longer realises she is at home. She thinks she is in a home or in hospital? Yesterday she asked me if I was "on" in the morning. It is the shouting that is so difficult. It is so hard to ignore. Of course we go into her room frequently, but if we responded to every shout, we would never be out of there, and we have to eat and rest sometimes! Last week she made herself quite ill with it...Senile agitation, or whatever it was, she shouted constantly for 48 hours. All day and all night for 2 days!! She has cot sides on her bed, and so is safe in bed, and I just had to go to bed, at the back of the house (my husband was away) where I couldn't hear her, and get some sleep! At the end of this, she conked out and then slept for 48 hours! I was able to get her up, washed and dressed, but she went back to sleep in her chair, and I couldn't wake her up to feed her, or to get her to drink, so she became quite dehydrated. Obviously I called the gp, who was very helpful, but the whole episode was very scary. Has anyone else experienced this? On the third day she woke up, and I could begin to get fluids into her, and she took well the high calorie drinks the doctor prescribed, but she was obviously weaker than before. Now she is eating a bit, but is much frailer. I am feeling exhausted by all of this. She is not fit enough to attend the new day care I had arranged for her, and I could do with a break! Hoping to arrange some respite soon, but don't really know where to start! Social Services have not been very helpful of late, but that is another story! Well I have rambled on enough, to anyone who has had the patience to have read all of this...thanks for listening!
livng with mother - immobile and shouting out for help
- Thread starter ditzydinah
- Start date
I hope someone will be along soon who can offer you some advice, you sound so worried & tired.
I hope you can get some respite care organised soon, giving you time to think about how/if you can continue to manage caring for your mum at home. Sounds like you've done a great job so far but maybe now need extra support.
xXx
I hope you can get some respite care organised soon, giving you time to think about how/if you can continue to manage caring for your mum at home. Sounds like you've done a great job so far but maybe now need extra support.
xXx
Hello ditzydinah
If your mother thinks she is in a home, it is doubtful she would know the difference if she was in respite care and I suggest you arrange it as soon as possible.
If Social Services [SS] see you are coping well, which you most certainly are, your request for respite can just drift and you will become more and more stressed.
I suggest you tell SS you just cannot cope anymore without a break and ask then=m to help you make arrangements for respite as soon as possible.
If your mother thinks she is in a home, it is doubtful she would know the difference if she was in respite care and I suggest you arrange it as soon as possible.
If Social Services [SS] see you are coping well, which you most certainly are, your request for respite can just drift and you will become more and more stressed.
I suggest you tell SS you just cannot cope anymore without a break and ask then=m to help you make arrangements for respite as soon as possible.
Hello welcome
As I read your post It reminded me so much of mum,
my mum was virtually bedridden, ate pureed food, couldn't do a thing for herself but she didn't keep calling out
I needed a break but was worried that the local care homes would neglect her
we decide to see if our local Hospice would consider taking mum , so we asked the gp to refer mum
and we are so glad we did
a Hospice nurse then a doctor came out to assess mum
and agreed to have mum for respite
it was one of the best things we ever did not only for us but for mum too, u see mum actually came home looking happier more contented
so may be you would consider respite at your local Hospice
I have a thread on here about it, if I can find it I'll put a link here about it in case it will be of some help
Here's the link
http://forum.alzheimers.org.uk/showthread.php?21490-Hospice-or-Care-home
As I read your post It reminded me so much of mum,
my mum was virtually bedridden, ate pureed food, couldn't do a thing for herself but she didn't keep calling out
I needed a break but was worried that the local care homes would neglect her
we decide to see if our local Hospice would consider taking mum , so we asked the gp to refer mum
and we are so glad we did
a Hospice nurse then a doctor came out to assess mum
and agreed to have mum for respite
it was one of the best things we ever did not only for us but for mum too, u see mum actually came home looking happier more contented
so may be you would consider respite at your local Hospice
I have a thread on here about it, if I can find it I'll put a link here about it in case it will be of some help
Here's the link
http://forum.alzheimers.org.uk/showthread.php?21490-Hospice-or-Care-home
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mum shouting
Thank you for your support and advice. I had not thought of a hospice Lin, I will look into it, I had been worrying about what sort of place I should approach for respite care, because Mum cannot walk, some places will not consider her. However she knows when she wants the loo, and with answering those needs she is not incontinent! I can transfer her easily onto the commode with help of a rota stand, she can semi weight bear, but the weaker she gets the less weight she can take. She is losing weight so is quite slight. But I am so worried and stressed by all this shouting. She started up again when I was writing my post late last night, and putting her on the loo, and giving her drinks just did not settle her. She was shouting "help" when I went to bed at 01.30, and was still shouting when I got up at 08.a.m. I hope she had some sleep in the meantime, but I do not know. My worry is if she keeps this up she will exhaust herself again, stop eating and drinking, and how many times can she manage like that? The haloperidol, and now respiridone is small doses do not seem to have any effect. I do not want to dope mum up, but neither do I want to see her collapse with exhaustion and agitation either. She was so outraged that I would not get her up at 1.a.m. last night! I went to work this morning and left her in the care of my husband, and carers who would shortly arrive to shower her, so who knows how the day went? It is a constant worry
Thank you for your support and advice. I had not thought of a hospice Lin, I will look into it, I had been worrying about what sort of place I should approach for respite care, because Mum cannot walk, some places will not consider her. However she knows when she wants the loo, and with answering those needs she is not incontinent! I can transfer her easily onto the commode with help of a rota stand, she can semi weight bear, but the weaker she gets the less weight she can take. She is losing weight so is quite slight. But I am so worried and stressed by all this shouting. She started up again when I was writing my post late last night, and putting her on the loo, and giving her drinks just did not settle her. She was shouting "help" when I went to bed at 01.30, and was still shouting when I got up at 08.a.m. I hope she had some sleep in the meantime, but I do not know. My worry is if she keeps this up she will exhaust herself again, stop eating and drinking, and how many times can she manage like that? The haloperidol, and now respiridone is small doses do not seem to have any effect. I do not want to dope mum up, but neither do I want to see her collapse with exhaustion and agitation either. She was so outraged that I would not get her up at 1.a.m. last night! I went to work this morning and left her in the care of my husband, and carers who would shortly arrive to shower her, so who knows how the day went? It is a constant worry
The shouting really gets you down, it's worse when you're tired.
When Dad was mobile he used to shout my name endlessly, day and night and very very loud.
When he started downstairs living, he didn't shout me so much in the evening. Which was a blessing, then one night about 9pm, he started to shout me, I never went straight away as mostly he was OK and just needed me to stroke his head then he would fall asleep.
I went down after a few minutes and found he had pushed the bed away from the wall and fell down the gap wrapped in his duvet, so he wasn't badly hurt.. I called an ambulance and they managed to rescue him.. but I felt so guilty because I hadn't gone to him straight away. He was face down on the floor
From then on I bought an alarm for his crash mat and made sure all 3 of the brakes were on the bed every night.. we didn't have any trouble after that.
Later on the shouting stopped, looking back I'm sad he stopped shouting as he rarely spoke after that.
When Dad was mobile he used to shout my name endlessly, day and night and very very loud.
When he started downstairs living, he didn't shout me so much in the evening. Which was a blessing, then one night about 9pm, he started to shout me, I never went straight away as mostly he was OK and just needed me to stroke his head then he would fall asleep.
I went down after a few minutes and found he had pushed the bed away from the wall and fell down the gap wrapped in his duvet, so he wasn't badly hurt.. I called an ambulance and they managed to rescue him.. but I felt so guilty because I hadn't gone to him straight away. He was face down on the floor
From then on I bought an alarm for his crash mat and made sure all 3 of the brakes were on the bed every night.. we didn't have any trouble after that.
Later on the shouting stopped, looking back I'm sad he stopped shouting as he rarely spoke after that.
Mum shouting
Oh what a sad story Kathphlox. You must have had such a shock to find your dad down the side of the bed! You just can't tell when the shouting means something can you? You get so used to it, and so weary of it, you just have to try and ignore it sometimes, but it always makes me feel on edge, I feel so guilty ignoring it, but I have to rest and sleep sometimes! Thanks for the tip about the bed. we have a hospital bed now that was supplied with cot sides. It has never moved so I guess brakes have been put on, but after your story I will check tomorrow! We have to have the cot sides because my mother would wake up in the morning and sometimes forget that she couldn't walk anymore, and we would come down and find her on the floor. She never hurt herself, but we were so worried she would do this in the middle of the night, and that we would sleep through the sensor alarm, which like you we have. Then we found that she was getting out from the space between the end of the cot side and the foot of the bed! So now we push her heavy recliner chair up against that space!! so we can sleep knowing that she is safe. She shouted all night Monday and all day Tuesday and Tuesday evening. She went to sleep about midnight last night, and has been asleep all day! She was awake to have her shower and breakfast but that is it. She had a drink when I woke her to get her ready for bed, and then went straight back to sleep. Looks like she is getting into some kind of awful pattern....
Oh what a sad story Kathphlox. You must have had such a shock to find your dad down the side of the bed! You just can't tell when the shouting means something can you? You get so used to it, and so weary of it, you just have to try and ignore it sometimes, but it always makes me feel on edge, I feel so guilty ignoring it, but I have to rest and sleep sometimes! Thanks for the tip about the bed. we have a hospital bed now that was supplied with cot sides. It has never moved so I guess brakes have been put on, but after your story I will check tomorrow! We have to have the cot sides because my mother would wake up in the morning and sometimes forget that she couldn't walk anymore, and we would come down and find her on the floor. She never hurt herself, but we were so worried she would do this in the middle of the night, and that we would sleep through the sensor alarm, which like you we have. Then we found that she was getting out from the space between the end of the cot side and the foot of the bed! So now we push her heavy recliner chair up against that space!! so we can sleep knowing that she is safe. She shouted all night Monday and all day Tuesday and Tuesday evening. She went to sleep about midnight last night, and has been asleep all day! She was awake to have her shower and breakfast but that is it. She had a drink when I woke her to get her ready for bed, and then went straight back to sleep. Looks like she is getting into some kind of awful pattern....
If she is awake for food and drink I wouldn't worry too much, the bed stuff can be arranged. Whatever you have to do, it can be done, the alarms are critical for your own peace of mind.
Do you know I had to give those alarms away on Freeclyle and have still not found anyone to take them. I'm not allowed to offer them on here, my posts have been deleted. But I'm still trying to pass them on to someone who can use them, free to anyone who can make use of them like we have.
It's good to see someone who has the same problems, it makes us not so alone with this.
Do you know I had to give those alarms away on Freeclyle and have still not found anyone to take them. I'm not allowed to offer them on here, my posts have been deleted. But I'm still trying to pass them on to someone who can use them, free to anyone who can make use of them like we have.
It's good to see someone who has the same problems, it makes us not so alone with this.
This all seems a bit familiar, except that mum is still mobile, the shouting seems to be when she wants to get control of a situation. When we try to watch tv she shouts over the top until it is switched off, when i use the phone for a social purpose, (about twice in the last few months!) she shouts until I get off the phone, if I don''t she will shout louder. If I go to the supermarket poor dad has to listen to her shouting. It seems mostly to be linked to a very negative experience in hospital where she got mysteriously injured.
If your mum shouts, particularly "help", have you thought of notifying your local police about the dementia?
Several years ago I dared to work outside and the first hint of all this shouting occured, she went into the garden and started shouting that she had been assaulted and to call the police, what happened wasn't nice, we didn't know this sort of thing happens - the sum total of what we were told was "it will get worse". First i called the Gp but it was 5 to 5 and he was going home, I called SS who didn't give a damn and told me to call an ambulance, I called an ambulance, they called the police as it was "a domestic" ( no it wasn't). Meanwhile 2 complete strangers stopped and refused to leave the poor old lady, one of them stood guard over her another stood by me, presumably to restrain me if I caused her further harm, they would not accept she had just started shouting for no reason. The police realised what the score was and left, the ambulance crew seperated mum from us, got her a chair and sat her on the drive for an hour explaining that we should refuse to accept her back (???).
Dad had fallen over trying to catch her and calm her down, I had to stay with him, when we got to the hospital mum had a huge bruise on her arm which she did not have before. We were given the 3rd degree by the hospital safguarding team, they tried to bully me into saying dad injured her (he is severely disabled and lacks strength and mobility). They drugged mum against our wishes, I complained they appointed IMCAs who, thankfully, saw that we were acting in mum's best interests. The hospital SW seemed intent on keeping mum drugged and putting her in a home.
We have had another little run in with the same hospital more recently where she got injured over several nights. Since that time there seems to be a fear which makes her shout more.
The police are now aware that she has dementia. When she shouted outside - did they neighbours call the police? No, there was a lot of amused gossip, we had 2 women standing on the drive jeering that night, since that time the neighbourhood has developed tunnel vision and just ignores us.
Whilst i love mum dearly, her mouth has caused us a lot of problems.
You have my sympathy.
If your mum shouts, particularly "help", have you thought of notifying your local police about the dementia?
Several years ago I dared to work outside and the first hint of all this shouting occured, she went into the garden and started shouting that she had been assaulted and to call the police, what happened wasn't nice, we didn't know this sort of thing happens - the sum total of what we were told was "it will get worse". First i called the Gp but it was 5 to 5 and he was going home, I called SS who didn't give a damn and told me to call an ambulance, I called an ambulance, they called the police as it was "a domestic" ( no it wasn't). Meanwhile 2 complete strangers stopped and refused to leave the poor old lady, one of them stood guard over her another stood by me, presumably to restrain me if I caused her further harm, they would not accept she had just started shouting for no reason. The police realised what the score was and left, the ambulance crew seperated mum from us, got her a chair and sat her on the drive for an hour explaining that we should refuse to accept her back (???).
Dad had fallen over trying to catch her and calm her down, I had to stay with him, when we got to the hospital mum had a huge bruise on her arm which she did not have before. We were given the 3rd degree by the hospital safguarding team, they tried to bully me into saying dad injured her (he is severely disabled and lacks strength and mobility). They drugged mum against our wishes, I complained they appointed IMCAs who, thankfully, saw that we were acting in mum's best interests. The hospital SW seemed intent on keeping mum drugged and putting her in a home.
We have had another little run in with the same hospital more recently where she got injured over several nights. Since that time there seems to be a fear which makes her shout more.
The police are now aware that she has dementia. When she shouted outside - did they neighbours call the police? No, there was a lot of amused gossip, we had 2 women standing on the drive jeering that night, since that time the neighbourhood has developed tunnel vision and just ignores us.
Whilst i love mum dearly, her mouth has caused us a lot of problems.
You have my sympathy.
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