Most nights now Dad phones me (he lives next door) at least once to say he's in desperate trouble and needs me to go help him. The trouble's always a delusion or hallucination of some kind - his living room's been smashed to pieces and burnt out, or all the things in the room look like his things but they're not real. So I go round at 1 or 2 in the morning and listen to him and try to calm him down. Sometimes after an hour or so he will come round from the delusion, and I can settle him down to sleep again, but it's really tiring for him and for me. (I'm not asking for sympathy - I know I'm lucky it's not worse.) The trouble is I'm finding it more and more difficult to follow the compassionate listener guidelines, especially when it's the middle of the night. I keep wanting to say What about me Dad? You've woken me up in the middle of the night again for nothing. I'm tired and I just want to sleep. Sometimes I do find myself saying it, and if he takes in what I'm saying it can really upset him. I need some kind of technique to stop myself saying these stupid things to him. Ideally I'd go away for a while and calm down and then come back, but if I try to leave him he's distraught. What do other people do to get beyond that mean little voice inside that says go away and leave me alone?
How to stop that mean little voice inside my head?
- Thread starter lulu21
- Start date
You don't stop the mean little voice, Lulu, because it's not a mean little voice at all. Reading your post, it's obvious that you're a caring, loving daughter and doing your best to support your Dad but you're also a very tired, frazzled daughter who'd just like a full night's sleep for once! So get the mean stuff out here because most of us here feel the frustration of caring and having a good moan gets it out of your system. No good festering.
But I do feel that maybe you need a bit more help. I'm guessing that there's no-one else who can visit your dad so at least you can take turns? If you have Welfare Guardianship for him (or even if not) have you spoken to his GP? Is there something he can take to help with these delusional episodes? I don't know, it's not something I went through with Mum and MIL was very briefly worried about spiders but it didn't last long. I know others here have struggled with this issue, so I'm sure someone here can offer better advice.
See you around Lulu. But don't feel bad - sounds like you're doing an incredible job of support.
But I do feel that maybe you need a bit more help. I'm guessing that there's no-one else who can visit your dad so at least you can take turns? If you have Welfare Guardianship for him (or even if not) have you spoken to his GP? Is there something he can take to help with these delusional episodes? I don't know, it's not something I went through with Mum and MIL was very briefly worried about spiders but it didn't last long. I know others here have struggled with this issue, so I'm sure someone here can offer better advice.
See you around Lulu. But don't feel bad - sounds like you're doing an incredible job of support.
I feel for you-its scary this illness isn't it? You obviously care for your dad but it takes a lot out of you too.Your dad doesn't intend to disturb you -he's scared too and doesn't really understand what is happening.We have been through this with mum and neighbours used to ring the police as mum screamed at night that she was being robbed(she wasn't-it was the dementia). She is now in a CH and these delusions have lessened.You are certainly not alone and other people on this site understand what you're experiencing and will support you.Hugs Lorraine xx
Yes that little voice that goes "OH No! Not AGAIN!!!"
Sorry don't know your full circumstances, but I think you can get some help from his GP with a medication that could help with his hallucinations.
If it gets any worse and you find it all too much, maybe this is the time to start looking at extra care during the night. Possible care home.
My mum moved to a care home once she started hallucinating. Some people said I moved her too early, others agreed with my decision. I moved mum whilst she was still able to communicate and create relationships with the care staff, and for us it's successful. Mum does worry that she will be moved out of this hotel she is staying in, and she doesn't want to, and needs reassurance that she can stay. It took a few months to get to this stage, but for us it's working.
Sorry don't know your full circumstances, but I think you can get some help from his GP with a medication that could help with his hallucinations.
If it gets any worse and you find it all too much, maybe this is the time to start looking at extra care during the night. Possible care home.
My mum moved to a care home once she started hallucinating. Some people said I moved her too early, others agreed with my decision. I moved mum whilst she was still able to communicate and create relationships with the care staff, and for us it's successful. Mum does worry that she will be moved out of this hotel she is staying in, and she doesn't want to, and needs reassurance that she can stay. It took a few months to get to this stage, but for us it's working.
Thank you so much for all your replies. Your advice wasn't quite what I was expecting, but it's good to be told I shouldn't be beating myself round the head too much! 
I think you're right and Dad and I do need some help here. There's nobody in the family who can share his care, and we might need to look at ways to help Dad with his hallucinations, so we can both get some more rest at night. He's not on anything for his dementia apart from memantine at the moment - in fact, although he's been having hallucinations on and off for quite a long time, it's only in the past few weeks that they've really started to get much more frequent and scary for him. I think it's just crept up on me and I haven't sat down and really thought about what's happened. I'll see if I can have a talk with Dad's GP about the problem. For the time being, Dad wants to be in his own home and I'm happy to support him in that, but I know I can't go on like this indefinitely without making some changes.
I think you're right and Dad and I do need some help here. There's nobody in the family who can share his care, and we might need to look at ways to help Dad with his hallucinations, so we can both get some more rest at night. He's not on anything for his dementia apart from memantine at the moment - in fact, although he's been having hallucinations on and off for quite a long time, it's only in the past few weeks that they've really started to get much more frequent and scary for him. I think it's just crept up on me and I haven't sat down and really thought about what's happened. I'll see if I can have a talk with Dad's GP about the problem. For the time being, Dad wants to be in his own home and I'm happy to support him in that, but I know I can't go on like this indefinitely without making some changes.Hi there Lulu,
I am glad you are posting thoughts like these. For very similar reasons I started a long, long thread 'Compassionate Me' because I too found it exeptionally difficult to be compassionate about things I would really prefer not to witness or experience in a loved one.
Woken one a night and having to stay with your Dad to calm him for an hour or two???? This isn't a little thing as you suggest in your post. This is downright horrendous. If we were doing this with a baby or toddler we would be on our knees, exhausted and praying this nasty phase of nighttime waking will pass.
Lulu, how do you manage at all? I think this is almost beyond human. You are absolutely amazing, the very heart and soul of compassion already.
I take my hat off to you. I don't know how you do it. Your Dad has raised a saintly daughter. I just hope that this dreadful spate of delusions ends soon - all things must pass, the good as well as the bad - but this is incredibly trying.
Just a thought. Is there anyone you could share the burden with. If you had someone who could get up every second or third night, allowing you to get a full night's sleep?
Truly awful, I sympathise.
All the best, BE
I am glad you are posting thoughts like these. For very similar reasons I started a long, long thread 'Compassionate Me' because I too found it exeptionally difficult to be compassionate about things I would really prefer not to witness or experience in a loved one.
Woken one a night and having to stay with your Dad to calm him for an hour or two???? This isn't a little thing as you suggest in your post. This is downright horrendous. If we were doing this with a baby or toddler we would be on our knees, exhausted and praying this nasty phase of nighttime waking will pass.
Lulu, how do you manage at all? I think this is almost beyond human. You are absolutely amazing, the very heart and soul of compassion already.
I take my hat off to you. I don't know how you do it. Your Dad has raised a saintly daughter. I just hope that this dreadful spate of delusions ends soon - all things must pass, the good as well as the bad - but this is incredibly trying.
Just a thought. Is there anyone you could share the burden with. If you had someone who could get up every second or third night, allowing you to get a full night's sleep?
Truly awful, I sympathise.
All the best, BE
If you find out, please let me know!4
Either way, I don't think it's a mean voice, but one of self-preservation - and one we should listen to...
Easier said than done (I am doing a rubbish job myself so far....).
Either way, I don't think it's a mean voice, but one of self-preservation - and one we should listen to...
Easier said than done (I am doing a rubbish job myself so far....).
On so many threads we have this same situation. It’s usually a daughter, rarely a son, having to respond to the needs of a parent. sometimes resentful and wanting to be free from the responsibility. I don’t blame them. It’s a real dilemma. It’s not the parents fault, if they were able, I’m sure they would rather be living independent lives and not having to depend on the help of their often begrudging offspring.
In some countries the old and infirm were simply pushed out of the house to freeze to death. In some ways I think that would be kinder than letting them linger on, an obvious nuisance to all; as we see from these threads.
My time is near, unless by some happy chance I can beckon the grim reaper to attend me. But if I can’t do that, I wonder what I am meant to do to avoid becoming the object of one of these threads?
It’s time we all give some thought to this, because as I said on a similar thread, the joke is that all of us in turn come to this point.
I have read bold statements, by some, that they will ensure that they will not become burdens to their offspring. Well, that is also my wish, so I would be grateful if these bold ones would tell me how this can be achieved. Perhaps I should just slip out one cold night, murmuring, "I'm just going out I may be some time"
In some countries the old and infirm were simply pushed out of the house to freeze to death. In some ways I think that would be kinder than letting them linger on, an obvious nuisance to all; as we see from these threads.
My time is near, unless by some happy chance I can beckon the grim reaper to attend me. But if I can’t do that, I wonder what I am meant to do to avoid becoming the object of one of these threads?
It’s time we all give some thought to this, because as I said on a similar thread, the joke is that all of us in turn come to this point.
I have read bold statements, by some, that they will ensure that they will not become burdens to their offspring. Well, that is also my wish, so I would be grateful if these bold ones would tell me how this can be achieved. Perhaps I should just slip out one cold night, murmuring, "I'm just going out I may be some time"
It is not a little voice inside me - it is a great big SHOUT. And it is not my parent - it is my husband. I think, to be honest, it is all about survival.
Hi Lulu
I had a similar problem with my MIL who lived with us. She was registered blind with a tiny bit of vision, and had a phase of standing at the bottom of the stairs in the middle of the night banging with her zimmer on the wooden floor, calling to come and help the old lady who had fallen, or deal with the children etc. She would also get into a panic and I remember well how tiring it was, but it was a phase.
As your dad lives next door, could you maybe sleep at his house on the nights you find it difficult to settle him? Or even for him to sleep at yours? We did this for about a year with MIL before she moved in with us and it worked well.
If you can remember a particularly happy time with your dad and put that in your mind the loving feeling will help you to keep being compassionate. It worked (some of the time!) with me.
Coletta x
I had a similar problem with my MIL who lived with us. She was registered blind with a tiny bit of vision, and had a phase of standing at the bottom of the stairs in the middle of the night banging with her zimmer on the wooden floor, calling to come and help the old lady who had fallen, or deal with the children etc. She would also get into a panic and I remember well how tiring it was, but it was a phase.
As your dad lives next door, could you maybe sleep at his house on the nights you find it difficult to settle him? Or even for him to sleep at yours? We did this for about a year with MIL before she moved in with us and it worked well.
If you can remember a particularly happy time with your dad and put that in your mind the loving feeling will help you to keep being compassionate. It worked (some of the time!) with me.
Coletta x
Again thank you to all of you for sharing your thoughts and experiences. We had a fairly quiet night last night, thank goodness. Dad very kindly saved his delusional episode till the morning, and came out of it fairly quickly.
BE, I've followed your thread with interest and I do recognise your frustrations. I don't know how I'll feel myself in 3 or 6 months time, but at the moment it's OK for me to go on doing this. But saintly - me??!! I'm fortunate that I'm relatively free of other obligations. I took early retirement a few months ago, in part so I could give my dad a bit more support, and that's made things a lot easier for me. I can't imagine how some TP posters manage with multiple responsibilities, it must just grind you down completely. If things get really difficult I can ask my OH to help out sometimes, but he does still have to work during the day, so I'm trying to avoid that as much as I can.
Miss Merlot, gringo, Butter, and Coletta, thank you. I really am having a good basic rethink about what my role is here, and how I can get some more help during the nights. I'm going to see Dad's doctor as soon as I can to talk things through with him again.
Coletta, I've thought about the possibility of staying overnight at my Dad's, but wanted to avoid making such a big change until it's really necessary. But what I could do is have a bed made up there for when he has a particularly bad night. (Hadn't thought of that one.) As you say, this is probably a phase - for several weeks he refused to let me cook him a hot meal in the evenings because 'they' were watching us and would make his life a misery if I did, but then it just disappeared. And I'll try to think about the happy times as you suggest when things get really bad. I'm lucky in that he's been a great dad. It's beyond me how people cope with this when they're expected to care for someone they can't love or respect.
Thanks again for all the help, I really do appreciate it. Take care of yourselves too.
BE, I've followed your thread with interest and I do recognise your frustrations. I don't know how I'll feel myself in 3 or 6 months time, but at the moment it's OK for me to go on doing this. But saintly - me??!!
I'm fortunate that I'm relatively free of other obligations. I took early retirement a few months ago, in part so I could give my dad a bit more support, and that's made things a lot easier for me. I can't imagine how some TP posters manage with multiple responsibilities, it must just grind you down completely. If things get really difficult I can ask my OH to help out sometimes, but he does still have to work during the day, so I'm trying to avoid that as much as I can. Miss Merlot, gringo, Butter, and Coletta, thank you. I really am having a good basic rethink about what my role is here, and how I can get some more help during the nights. I'm going to see Dad's doctor as soon as I can to talk things through with him again.
Coletta, I've thought about the possibility of staying overnight at my Dad's, but wanted to avoid making such a big change until it's really necessary. But what I could do is have a bed made up there for when he has a particularly bad night. (Hadn't thought of that one.) As you say, this is probably a phase - for several weeks he refused to let me cook him a hot meal in the evenings because 'they' were watching us and would make his life a misery if I did, but then it just disappeared. And I'll try to think about the happy times as you suggest when things get really bad. I'm lucky in that he's been a great dad. It's beyond me how people cope with this when they're expected to care for someone they can't love or respect.
Thanks again for all the help, I really do appreciate it. Take care of yourselves too.
Hi Lulu
it's not a mean little voice at all! It's an exhausted anxious little voice, I know because my sister and I jeR it too. My sister has tried staying with Mum at night but it was a nightmare. Mum was unsettled because she knew there was someone in the house and kept my sister awake all night walking around and making a noise, constantly shouting "Are you still there?" After three days of it she was exhausted and resentful, feeling awful.
We're going back to the old routine of taking it in turns to be 'on call' through the night whilst staying in our own homes. Wish I had an answer....
it's not a mean little voice at all! It's an exhausted anxious little voice, I know because my sister and I jeR it too. My sister has tried staying with Mum at night but it was a nightmare. Mum was unsettled because she knew there was someone in the house and kept my sister awake all night walking around and making a noise, constantly shouting "Are you still there?" After three days of it she was exhausted and resentful, feeling awful.
We're going back to the old routine of taking it in turns to be 'on call' through the night whilst staying in our own homes. Wish I had an answer....
You could simply tell your children that you don't expect them to care for you beyond a certain point which you and they can define now, ahead of time, and would be grateful if they could make the best provisions for you that finances allow. Is there anything else we can realistically do?
Where that 'certain point' is will depend on circumstances, relationships etc and for some it'll never come. But for others it will, and I for one wouldn't want my sons to even think about having me live with them and their families if I became as abusive and downright nasty as my own mother has been to me and mine. Whether it's dementia changing a person or the previous personality becoming uninhibited, someone screaming abuse in your face time and again is difficult to shrug off and people shouldn't have to put up with it and the mountain of other difficulties that dementia often brings unless they really and truly feel up to it. Many won't be and really can't be blamed.
Perhaps it's simply a case of discussing these issues with your offspring before any problems arise.
Talk about the 'What ifs..?" and give them your permission in advance to make the difficult decisions that might (or might not, fingers crossed) be necessary.
You might find it has crossed their minds too, but they are reluctant to bring the subject up.
Oh, and don't forget - we should all get our LPAs sorted out well in advance
Hello Gringo, for the second time tonight.
Ah, I see you must be quite elderly.
I don't think you should worry about being the subject of discussion on these boards. The posts are all from worried daughters, and more sons that you give credit to, wanting to do their best for their parents, without ruining their own lives in the mean time. And I don't mean "without it inconveniencing them", cos they are all used to inconvenience, I mean ruining their lives. So if your loved ones find they are struggling to look after you, and they post on here, I would take that as a compliment that they think you are worth the effort, and would say you should take comfort from the fact that you brought them up to be such considerate and responsible people.
But if they have tried to cope (and I believe most people SHOULD and DO try), and can't manage it, then you'll have to accept the next best alternative, i.e. a care home.
Accept it knowing that there was no reasonable alternative.
I don't think you have to step out into the cold, and your relatives would be very upset if you did.
I recall the day I took my mum out of the care home to travel 12 miles for a hearing test. The journey there was fine (thought she thought it had taken two hours), the test was fine, but about half way home she said "Where am I going to stay tonight? I know you have sold my house, so I can't go there. It is cold, am I going to have to sleep outside somewhere? Will you lend me some blankets?". She was dead matter-of-fact about it, not at all scared. Almost accepting that she would be sleeping outside that night. Maybe in her younger life she had known people who had to sleep outside with some blankets. I was shocked. Of course my mother would not be sleeping outside. I didn't particularly get on with my mother, had little admiration for her, but no way was I letting any relative of mine sleep outside.
I told her we were going back to the care home. She had already forgotten it, so I had to explain it to her. She relaxed a little, but I still felt she was resigned to sleeping outside. We arrived at the care home, and fortunately the lovely manager opened the door to us, and mum said "Am I okay to come in and stay the night?". Comforting arms were wrapped around her, the kettle was put on, mum's coat was taken up to her room. All was well. Phew!
I will never forget that day as long as I live.
So Gringo, don't talk about going out in the cold. Something will be sorted for you when that day comes. Never mind if your rellies are asking advice on here. We won't be telling them to shove you outside.
Love
Margaret
Ah, I see you must be quite elderly.
I don't think you should worry about being the subject of discussion on these boards. The posts are all from worried daughters, and more sons that you give credit to, wanting to do their best for their parents, without ruining their own lives in the mean time. And I don't mean "without it inconveniencing them", cos they are all used to inconvenience, I mean ruining their lives. So if your loved ones find they are struggling to look after you, and they post on here, I would take that as a compliment that they think you are worth the effort, and would say you should take comfort from the fact that you brought them up to be such considerate and responsible people.
But if they have tried to cope (and I believe most people SHOULD and DO try), and can't manage it, then you'll have to accept the next best alternative, i.e. a care home.
Accept it knowing that there was no reasonable alternative.
I don't think you have to step out into the cold, and your relatives would be very upset if you did.
I recall the day I took my mum out of the care home to travel 12 miles for a hearing test. The journey there was fine (thought she thought it had taken two hours), the test was fine, but about half way home she said "Where am I going to stay tonight? I know you have sold my house, so I can't go there. It is cold, am I going to have to sleep outside somewhere? Will you lend me some blankets?". She was dead matter-of-fact about it, not at all scared. Almost accepting that she would be sleeping outside that night. Maybe in her younger life she had known people who had to sleep outside with some blankets. I was shocked. Of course my mother would not be sleeping outside. I didn't particularly get on with my mother, had little admiration for her, but no way was I letting any relative of mine sleep outside.
I told her we were going back to the care home. She had already forgotten it, so I had to explain it to her. She relaxed a little, but I still felt she was resigned to sleeping outside. We arrived at the care home, and fortunately the lovely manager opened the door to us, and mum said "Am I okay to come in and stay the night?". Comforting arms were wrapped around her, the kettle was put on, mum's coat was taken up to her room. All was well. Phew!
I will never forget that day as long as I live.
So Gringo, don't talk about going out in the cold. Something will be sorted for you when that day comes. Never mind if your rellies are asking advice on here. We won't be telling them to shove you outside.
Love
Margaret
And sorry, Lulu, but in tune with everyone else, the voice in your head is one of concern and care, not meanness.
Love
Margaret
Love
Margaret
Again very sensible talk from Margaret W. That is exactly the way my Mum is when I take her out for an afternoon. She really thinks she has no bed for the night and is surprised on return to see that they accept her back in. Sad.
Gringo- you refer to Oates on the expedition to the South pole. I find that quote very touching, he gave up his life as he knew he was going to be a burden to the others, though they didn't make it anyway.
I love to read your posts. They are a refreshing slant on actuality of being an older person. You sound like a very philosophical man. I respect your wisdom. I haven't had a good father figure in life (though father very much alive- alcoholic all through my childhood and still is)and would dearly love to have had one, or at least to have experienced one a wise as yourself. But such is life. I struggle on doing the best for my Mum (the one with dementia)who made some very bad decisions in her life and now we are left to pick up the pieces.
Anyway, as well as making your wishes known to family, if you have one, have you got your POA sorted and made a living will/advanced directive. That is what I am doing (and I'm in my 40's). I have 3 children ranging from 20's down to 14. They all now know my opinion on this matter.
M
Gringo- you refer to Oates on the expedition to the South pole. I find that quote very touching, he gave up his life as he knew he was going to be a burden to the others, though they didn't make it anyway.
I love to read your posts. They are a refreshing slant on actuality of being an older person. You sound like a very philosophical man. I respect your wisdom. I haven't had a good father figure in life (though father very much alive- alcoholic all through my childhood and still is)and would dearly love to have had one, or at least to have experienced one a wise as yourself. But such is life. I struggle on doing the best for my Mum (the one with dementia)who made some very bad decisions in her life and now we are left to pick up the pieces.
Anyway, as well as making your wishes known to family, if you have one, have you got your POA sorted and made a living will/advanced directive. That is what I am doing (and I'm in my 40's). I have 3 children ranging from 20's down to 14. They all now know my opinion on this matter.
M
I just wanted to thank you again for your advice. We went to my dad's GP yesterday and he prescribed sleeping pills (zopiclone). Dad slept through last night and I got an undisturbed sleep. I feel SO much better already! I've read on TP threads that zopiclone might not work for long, but we'll face that one when it comes. Even a short-term fix will at least give us both a bit of a breather.
I've read on TP threads that zopiclone might not work for long, but we'll face that one when it comes. Even a short-term fix will at least give us both a bit of a breather.
