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I just want my mum to be happy

Rattbagg

New member
Jun 8, 2020
8
Hello, this is my first post on a forum ever. I care for my mum who as had dementia for around 12 years, at first I went round to hers once a day before she went off to do her shopping then as time went on her arthritis got worse so she moved to a bungalow with supported living. That was nine years ago, over that nine years both her dementia and arthritis have deteriorated considerably to the point I was going up there 4 times a day walking 8 miles a day, it kept me fit and healthily but sometimes didn't know weather I was coming or going. The last two years there was difficult for her she kept thinking she didn't live there and wanted to go home. She was ringing the police and ambulance services to try and get home, also setting off at all hours to go home the neighbours would ring me to let me know. For the last 19 months mum as lived with me and my family but isn't happy here she still wants to go home, one night last week she started screaming help in the middle of the night, I ran in thinking she had fallen she demanded to see someone in charge and on amount of distraction or negotiation was working so I left her to keep shooting for help, I just kept popping in to see if she was ready to talk, it's a wonder the police didn't come to the door, after about an hour she went quiet, I went in cleared the floor of what she'd thrown, she demanded to go home again, I just said we'll sort it tomorrow and left her room. She was lovely and calm in the morning. Anyway I have 2 questions, is there anything I could have done differently and what stage do you think mums at now, nobody seems to tell me stuff like that. Mum is on domipezil and respiridone if that helps thank you for reading this x
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,861
Nottinghamshire
Welcome to Dementia Talking Point @Rattbagg

It sounds as though your mum was sundowning which is a period of increased confusion at the end of the day. It's difficult to know what to do for the best but explaining won't work and may add to the distress. I wonder if this will help


It's hard to say what stage your mum is at as the symptoms vary with each person. If this behaviour continues its worth speaking to her GP to see if her meds can be tweaked to help keep her calm.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
9,311
Yorkshire
hello @Rattbagg
a warm welcome to DTP
gosh, you've been doing sterling caring for your mum for so long ... she's a fortunate woman to have you looking after her
I wonder, though, who is supporting you as caring day and night takes its toll

it's always hard to say what stage an individual is at ... maybe have a look on the main AS site through the blue button extreme top right of this page, it has a lot of info

many of us will recognise the calling to go home ... it's rarely about someon's actual home, though can be related to their childhood, where they felt safe with their parents ... it's more about using 'home' as a way to express wanting to be without the confusion and stress and anxiety of dementia, and that, so sadly, we cannot give to our loved one

we'd love to be able to make the one we care for be happy again; unfortunately it's the nature of dementia to steal away happiness, so sometimes we have to settle for knowing the person is safe and cared for and sometimes settled

maybe it's time to begin to consider some respite for your mum, to let you recharge your batteries ... maybe even fulltime residential care for your mum, so you can be her daughter with a team of carers supporting you both
 

nae sporran

Volunteer Host
Oct 29, 2014
7,124
Bristol
Welcome to the forum, @Rattbagg. Sadly, that kind of insecurity and pining for home, which is really for a place of security like a childhood home, is common with dementia. Distraction and reassurance are usually the best approach, so it is hard to say what you could have done differently and the compassionate communication tips Bunpoots posted will help. Others will be able to advise on medication or stages of the disease.
 

Rosettastone57

Registered User
Oct 27, 2016
1,375
It's unlikely your mum will be happy anywhere . It's all part and parcel of the disease. I think your mum needs 24/7 supervision, perhaps you could consider respite care, or full time care with a whole team looking after her?
 

lemonbalm

Registered User
May 21, 2018
707
Hello @Rattbagg . What a marvelous job you are doing. If this is the first time your mum has started screaming, it's always worth checking for signs of a uti or something which might have caused pain during the night. My mum is in a care home now but has started screaming on a regular basis. It can be due to a uti (in which case it normally goes on for hours on end), frustration, needing the loo, constipation, pain, sometimes we never find the reason but she seems to be frightened of something she can't express. I can say that you have dealt with it just as I, or the carers at mum's care home, would have dealt with it. My mum is likely to fall or injure herself, so somebody normally has to stay with her but that can make her more agitated, so you were probably right to give your mum space to calm down. I would say consult the GP if your mum starts to do this regularly. In my experience, they tend to be reluctant to prescribe anything if it's an occasional thing, as most of the calming medications can make the person with dementia too sleepy or unsteady on their feet. It's pretty traumatic hearing your mum screaming like that. I hope you are ok. My mum has advanced vascular dementia but, as others have said, it's different for everyone.
 

JGDMG

Registered User
May 5, 2020
47
hi @Rattbag
Everyone's advice here seems as usual very useful and understanding and I hope is helping you. You must've been in a desperate situation to reach out for help, especially if you've never used this type of support before. I'm glad you did and I do hope it has helped a little. Sometimes I find that writing it down and letting people see, or talking to someone, can be a help in itself. My view, and I'm certainly no expert is that you now need to consider providing better care for your mother than you are now able to give. Residential care, with expert carers there who can manage your mums illness. You don't need me to tell you that 12 years is a huge chunk of life to devote to helping someone. Everything will not suddenly get better overnight with residential care, but you will be able to rest easier knowing that she is safe, and that her needs are being met. I think this does remove that anxiety (as you said you thought she had fallen that night) the anxiety is pretty constant and becomes part of your life. Even removing that can help things to improve. Sometimes caring for people means accepting that they need more than you can provide. Good Luck x
 

Rattbagg

New member
Jun 8, 2020
8
hi @Rattbag
Everyone's advice here seems as usual very useful and understanding and I hope is helping you. You must've been in a desperate situation to reach out for help, especially if you've never used this type of support before. I'm glad you did and I do hope it has helped a little. Sometimes I find that writing it down and letting people see, or talking to someone, can be a help in itself. My view, and I'm certainly no expert is that you now need to consider providing better care for your mother than you are now able to give. Residential care, with expert carers there who can manage your mums illness. You don't need me to tell you that 12 years is a huge chunk of life to devote to helping someone. Everything will not suddenly get better overnight with residential care, but you will be able to rest easier knowing that she is safe, and that her needs are being met. I think this does remove that anxiety (as you said you thought she had fallen that night) the anxiety is pretty constant and becomes part of your life. Even removing that can help things to improve. Sometimes caring for people means accepting that they need more than you can provide. Good Luck x
I've no idea what I've done there, just wanted to say thank you for your help and compassion, I have been thinking of residential care for about 6 months now, I do tend to need options to keep my head stable. I was thinking maybe when mum has had her knee replacements, she can hardly walk at the moment and of coarse when covid is over, whenever that may be thank you again x
 

JGDMG

Registered User
May 5, 2020
47
I've no idea what I've done there, just wanted to say thank you for your help and compassion, I have been thinking of residential care for about 6 months now, I do tend to need options to keep my head stable. I was thinking maybe when mum has had her knee replacements, she can hardly walk at the moment and of coarse when covid is over, whenever that may be thank you again x
Ah I'm glad some of it was useful and hopefully helped a bit .I'm glad that Im not the only one who doesn't know her way around this site, or which button to press, I don't even know if you will get this! Here goes
 

Rattbagg

New member
Jun 8, 2020
8
Ah I'm glad some of it was useful and hopefully helped a bit .I'm glad that Im not the only one who doesn't know her way around this site, or which button to press, I don't even know if you will get this! Here goes
Yes I've got it, I've just been mouching round. I'm amazed how much human being can cope, all the devastating stories. I used to cry at the drop of a hat, but now I can be more matter of fact, I just have the odd little flip now and then
 

Snowdrops77

New member
Feb 20, 2019
9
Hello
Your story sounds so familiar to mine. My mum is at end stage 6 with Alzheimer's and vascular dementia. I have cared for her in her bungalow for 6 years until it was so unsafe for her, last two years she is living with me. Mum demands to go home to her mum dad and sister they all died decades ago mums 74. Mum also Sundowns everyday anytime from 2pm which can last hours. Demanding to go home, packing, yelling, I tend to take her out for walks and car rides, I have an echo dot and use Alexa to play all her favourite music on demand as some songs will make her cry which releases all her frustrations I can then settle her in a bath while she soaks and cries. She is up through the night calling mum dad home and packing. No medication has helped. She takes lorazapam 1/2 tablet for anxiety and Trazadone 100mg. I say "tomorrow" and try to distract her which is mostly impossible. I really don't know where their energy comes from my mum can keep going all day, while I am absolutely exhausted. I feel for you, your not alone x
 

JGDMG

Registered User
May 5, 2020
47
Yes I've got it, I've just been mouching round. I'm amazed how much human being can cope, all the devastating stories. I used to cry at the drop of a hat, but now I can be more matter of fact, I just have the odd little flip now and then
Yes I've got it, I've just been mouching round. I'm amazed how much human being can cope, all the devastating stories. I used to cry at the drop of a hat, but now I can be more matter of fact, I just have the odd little flip now and then
Good! that's progress indeed. (I still cry at the drop of a hat!) It's not a good look!
 

Rattbagg

New member
Jun 8, 2020
8
Hello
Your story sounds so familiar to mine. My mum is at end stage 6 with Alzheimer's and vascular dementia. I have cared for her in her bungalow for 6 years until it was so unsafe for her, last two years she is living with me. Mum demands to go home to her mum dad and sister they all died decades ago mums 74. Mum also Sundowns everyday anytime from 2pm which can last hours. Demanding to go home, packing, yelling, I tend to take her out for walks and car rides, I have an echo dot and use Alexa to play all her favourite music on demand as some songs will make her cry which releases all her frustrations I can then settle her in a bath while she soaks and cries. She is up through the night calling mum dad home and packing. No medication has helped. She takes lorazapam 1/2 tablet for anxiety and Trazadone 100mg. I say "tomorrow" and try to distract her which is mostly impossible. I really don't know where their energy comes from my mum can keep going all day, while I am absolutely exhausted. I feel for you, your not alone x
Very similar, even the half lorazepam not that that works, the music, can't drive so that's not possible. It's interesting to know the stage your mum is at as nobody seems to tell me anything. They stopped the memory clinic and referred her back to doc's so I only go there when she's ill. When she's that adamant about going, I let her she can't get further than the garden path because her knees are so bad, when she comes back in she seems to be calmer, she makes up stories about being on a bus and things like that. It's more her old normal self odd as that sounds, it's just different to answering the same questions over and over again. Chin up x
 

Hazara8

Registered User
Apr 6, 2015
539
Hello, this is my first post on a forum ever. I care for my mum who as had dementia for around 12 years, at first I went round to hers once a day before she went off to do her shopping then as time went on her arthritis got worse so she moved to a bungalow with supported living. That was nine years ago, over that nine years both her dementia and arthritis have deteriorated considerably to the point I was going up there 4 times a day walking 8 miles a day, it kept me fit and healthily but sometimes didn't know weather I was coming or going. The last two years there was difficult for her she kept thinking she didn't live there and wanted to go home. She was ringing the police and ambulance services to try and get home, also setting off at all hours to go home the neighbours would ring me to let me know. For the last 19 months mum as lived with me and my family but isn't happy here she still wants to go home, one night last week she started screaming help in the middle of the night, I ran in thinking she had fallen she demanded to see someone in charge and on amount of distraction or negotiation was working so I left her to keep shooting for help, I just kept popping in to see if she was ready to talk, it's a wonder the police didn't come to the door, after about an hour she went quiet, I went in cleared the floor of what she'd thrown, she demanded to go home again, I just said we'll sort it tomorrow and left her room. She was lovely and calm in the morning. Anyway I have 2 questions, is there anything I could have done differently and what stage do you think mums at now, nobody seems to tell me stuff like that. Mum is on domipezil and respiridone if that helps thank you for reading this x
I have just come upon your post and wish to express profound admiration for the sheer longevity of care you have quite clearly given out to your mother who is living with dementia. As every single case is different it is not prudent to offer specific advice on either care or medications which are utilised in dementia per se. Probably the key word which overrides almost everything else, is " comfort ". The nature of dementia is such that despite everything - drugs, therapy, ultimate care and all that implies - it remains an immense challenge to those who are playing out the role of carer and especially so when the relationship is extremely close. The brain is quite extraordinary in itself when full capacity reigns. And yet once dementia takes possession of that brain, the person to whom it belongs no longer can express themselves as before and an inner frustration/ confusion comes about, a new " reality" in effect. Thus the seemingly illogical becomes the norm. Time itself has no meaning. Sounds, colours, an inflection in the voice of even the look in an eye - all these can constitute something which engenders anxiety and sometimes aggression. The old part of the brain - past memory - can remain remarkably clear and intact and if stimulated can prove to be a true and powerful ally in " communication ". At the end of the day dementia and all its varied presentations makes the rules and it is up to us who play the role of Carer to be critically aware of how WE behave and how WE react in a given situation . Because the one afflicted with dementia has no say in the matter after a point, when the disease takes hold and renders the loved one unable to perform even basic personal functions without assistance. This journey is so varied in the way it afflicts people that each case must be seen and heard as such, not in any way compared with nor subordinated in the light of severity. If and when there comes a time that warrants the admission into Care , then that is usually because you the Carer are vulnerable and only human and can only bear so much anxiety and psychological pressure, else fall victim to illness yourself and compound the whole scenario into a living nightmare. It is more or less impossible to convey the depth of despair which accompanies the moment a loved one is compelled to move into Care. And yet you constantly remind yourself through the tears that "best interests " remains paramount throughout. It has to be so. That is never an easy call when emotions run high. Unlike 'normal' diseases which make demands on both parties when they progress, dementia removes the " partnership " of debate and the interaction which can dissipate anxiety or offer up logical perspective even when things are far from well. Thus that gentle taking of a hand or the authenticity of a broad smile and the integrity of a comforting embrace, even when there is seemingly no obvious response, no expression of gratitude , nevertheless becomes fundamentally truthful and eminently meaningful because it equates to everything we term " love". The terminal journey which dementia holds jurisdiction over, need not be a hapless nor helpless one. That one fleeting spark of recognition which shines out of clouded eyes and brings forth a heartfelt smile of joy, outweighs all the medications and theoretical analysis combined and however brief in its momentary appearance, by nature of this cruel and remorseless disease, it is almost sacred in essence, because it belongs to the one you know to be still truly resident in a body and mind ravaged by a disease which has no notion of what we possess in our humanity - an ability to love.
 

Rattbagg

New member
Jun 8, 2020
8
I have just come upon your post and wish to express profound admiration for the sheer longevity of care you have quite clearly given out to your mother who is living with dementia. As every single case is different it is not prudent to offer specific advice on either care or medications which are utilised in dementia per se. Probably the key word which overrides almost everything else, is " comfort ". The nature of dementia is such that despite everything - drugs, therapy, ultimate care and all that implies - it remains an immense challenge to those who are playing out the role of carer and especially so when the relationship is extremely close. The brain is quite extraordinary in itself when full capacity reigns. And yet once dementia takes possession of that brain, the person to whom it belongs no longer can express themselves as before and an inner frustration/ confusion comes about, a new " reality" in effect. Thus the seemingly illogical becomes the norm. Time itself has no meaning. Sounds, colours, an inflection in the voice of even the look in an eye - all these can constitute something which engenders anxiety and sometimes aggression. The old part of the brain - past memory - can remain remarkably clear and intact and if stimulated can prove to be a true and powerful ally in " communication ". At the end of the day dementia and all its varied presentations makes the rules and it is up to us who play the role of Carer to be critically aware of how WE behave and how WE react in a given situation . Because the one afflicted with dementia has no say in the matter after a point, when the disease takes hold and renders the loved one unable to perform even basic personal functions without assistance. This journey is so varied in the way it afflicts people that each case must be seen and heard as such, not in any way compared with nor subordinated in the light of severity. If and when there comes a time that warrants the admission into Care , then that is usually because you the Carer are vulnerable and only human and can only bear so much anxiety and psychological pressure, else fall victim to illness yourself and compound the whole scenario into a living nightmare. It is more or less impossible to convey the depth of despair which accompanies the moment a loved one is compelled to move into Care. And yet you constantly remind yourself through the tears that "best interests " remains paramount throughout. It has to be so. That is never an easy call when emotions run high. Unlike 'normal' diseases which make demands on both parties when they progress, dementia removes the " partnership " of debate and the interaction which can dissipate anxiety or offer up logical perspective even when things are far from well. Thus that gentle taking of a hand or the authenticity of a broad smile and the integrity of a comforting embrace, even when there is seemingly no obvious response, no expression of gratitude , nevertheless becomes fundamentally truthful and eminently meaningful because it equates to everything we term " love". The terminal journey which dementia holds jurisdiction over, need not be a hapless nor helpless one. That one fleeting spark of recognition which shines out of clouded eyes and brings forth a heartfelt smile of joy, outweighs all the medications and theoretical analysis combined and however brief in its momentary appearance, by nature of this cruel and remorseless disease, it is almost sacred in essence, because it belongs to the one you know to be still truly resident in a body and mind ravaged by a disease which has no notion of what we possess in our humanity - an ability to love.
Wow what a beautiful post, I wish I had that ability. I love my mum very much, we have always had a strong bond. It is becoming time to think of care homes though. If it was just me and mum I would probably carry on to the end but I also have to think about my husband and son too. It can be very difficult sometimes trying to keep the plates spinning. I know it's going to be heart wrenching when the time comes, I can visit her and still be part of her life such as it is. Thank you for your post x
 

MalcW

Registered User
Jul 3, 2020
11
Hi

Just a small suggestion. I had a similar experience for the first time about 3 weeks ago with my wife. Previous to that we had an episode of sleep walking. Before lock down, she liked to go to see musicals and copy cat groups at local theatres, where she used to sing along and wave her arms about and have a good old time. I used this fact to help the situation by playing music from those eras that she most enjoyed. It seemed to work then and continues to do so when she becomes anxious. I think the difficulty might be spotting the era she has got stuck in at a particular time and playing music from that time, but I seem to have been lucky so far.
 

Rattbagg

New member
Jun 8, 2020
8
Hi

Just a small suggestion. I had a similar experience for the first time about 3 weeks ago with my wife. Previous to that we had an episode of sleep walking. Before lock down, she liked to go to see musicals and copy cat groups at local theatres, where she used to sing along and wave her arms about and have a good old time. I used this fact to help the situation by playing music from those eras that she most enjoyed. It seemed to work then and continues to do so when she becomes anxious. I think the difficulty might be spotting the era she has got stuck in at a particular time and playing music from that time, but I seem to have been lucky so far.
Yes she does like her music I will be more alert and try and spot the times thank you x
 

Bill11651

New member
Jun 29, 2020
7
Hello, this is my first post on a forum ever. I care for my mum who as had dementia for around 12 years, at first I went round to hers once a day before she went off to do her shopping then as time went on her arthritis got worse so she moved to a bungalow with supported living. That was nine years ago, over that nine years both her dementia and arthritis have deteriorated considerably to the point I was going up there 4 times a day walking 8 miles a day, it kept me fit and healthily but sometimes didn't know weather I was coming or going. The last two years there was difficult for her she kept thinking she didn't live there and wanted to go home. She was ringing the police and ambulance services to try and get home, also setting off at all hours to go home the neighbours would ring me to let me know. For the last 19 months mum as lived with me and my family but isn't happy here she still wants to go home, one night last week she started screaming help in the middle of the night, I ran in thinking she had fallen she demanded to see someone in charge and on amount of distraction or negotiation was working so I left her to keep shooting for help, I just kept popping in to see if she was ready to talk, it's a wonder the police didn't come to the door, after about an hour she went quiet, I went in cleared the floor of what she'd thrown, she demanded to go home again, I just said we'll sort it tomorrow and left her room. She was lovely and calm in the morning. Anyway I have 2 questions, is there anything I could have done differently and what stage do you think mums at now, nobody seems to tell me stuff like that. Mum is on domipezil and respiridone if that helps thank you for reading this x
Hi I like you a new to this Forum pointed here by the CPN to see were not alone. Mum was going through the 'Sundown ' stage and was awake most of the night writing paranoid letter (all times and dated) and calling family including us are 3am. This went on for a few months and the CPN suggested night sedation for mum to be included in the blister packs. Worked a treat knocks her out overnight and gives up some sleep. So this may be an idea to talk through with her Doctor.
 

Rattbagg

New member
Jun 8, 2020
8
Hi I like you a new to this Forum pointed here by the CPN to see were not alone. Mum was going through the 'Sundown ' stage and was awake most of the night writing paranoid letter (all times and dated) and calling family including us are 3am. This went on for a few months and the CPN suggested night sedation for mum to be included in the blister packs. Worked a treat knocks her out overnight and gives up some sleep. So this may be an idea to talk through with her Doctor.
Doc doesn't like sedation, and I tend to agree, I don't want her to be like a zombie, her life is very limited now without her being dumbed down, but thank you for the thought x