Awoken at 5.30 am and feeling sorry for myself

[FiveWords]

Hi everyone,

My dad called me yet again today at 5.30 am to ask me what time his sister-in-law is coming to pick him up (I'll give you a clue, Daddy: not in the middle of the friggin night!!) and I'm just fed up, I only got to bed at about 12.45 and I have a massive deadline to hit tomorrow at work that will require me to work well into the night tonight. I cannot function on 5 hours sleep, I am wrecked but I can't get back to sleep so have just got up and sobbed. I'm not a morning person (understatement) and I don't do well with sleep deprivation. Just really, really fed up. Why doesn't he understand that it isn't acceptable to call me at that unholy hour? Sometimes he even apologises for "ringing at this time" when he speaks to me and I find myself thinking "if you KNOW you're waking me up how about you DON'T DO IT???" Would it be unreasonable of me to turn my phone off at night? The reason I don't is he gets confused in the mornings and gets into a panic, and then if he can't get hold of anyone he panics worse. I can't continue to live like this, these are supposed to be my child-free years I don't need to get up at the crack of dawn

Thanks for letting me get that off my chest.

[Grannie G]

Would it be unreasonable of me to turn my phone off at night? The reason I don't is he gets confused in the mornings and gets into a panic, and then if he can't get hold of anyone he panics worse.

You answered your own question.

Perhaps the time is coming for your dad to have 24/7 care where he won`t panic because someone will always be there.

[zeeeb]

could you stick a note on his phone that says, do not call anyone before 9a or after 9pm unless it is an absolute emergency?

maybe it'd make him think twice. he could even write a note for himself what the question was.

[Witzend]

Hi everyone,

My dad called me yet again today at 5.30 am to ask me what time his sister-in-law is coming to pick him up (I'll give you a clue, Daddy: not in the middle of the friggin night!!) and I'm just fed up, I only got to bed at about 12.45 and I have a massive deadline to hit tomorrow at work that will require me to work well into the night tonight. I cannot function on 5 hours sleep, I am wrecked but I can't get back to sleep so have just got up and sobbed. I'm not a morning person (understatement) and I don't do well with sleep deprivation. Just really, really fed up. Why doesn't he understand that it isn't acceptable to call me at that unholy hour? Sometimes he even apologises for "ringing at this time" when he speaks to me and I find myself thinking "if you KNOW you're waking me up how about you DON'T DO IT???" Would it be unreasonable of me to turn my phone off at night? The reason I don't is he gets confused in the mornings and gets into a panic, and then if he can't get hold of anyone he panics worse. I can't continue to live like this, these are supposed to be my child-free years I don't need to get up at the crack of dawn

Thanks for letting me get that off my chest.

Honestly, Fivewords, I would switch your phone off at night. You can't go on like this - you will crack up. My mother was constantly ringing my brother at all hours - in the end he just had to turn it off at night. Like my mother, your dad will probably be incapable of remembering not to ring at certain hours (or 30 times an hour come to that) and instructions/labels/great big signs hardly ever work work since the instant their eyes are turned away they will forget, and even if they see DON'T RING BETWEEN 11 AND 6.30 they will be unaware that it's 5 am anyway.

Please, switch it off - your dad may get into a tizz for a bit but the world will not come to an end.

Edit: having said that signs hardly ever work it may help your conscience (and just maybe your dad) to put a great big sign where he is likely to see it: SORRY, BUT I CAN'T ANSWER THE PHONE BETWEEN (say) 11 PM AND 6.30 AM. I AM VERY BUSY WITH WORK AND NEED MY SLEEP. PLEASE DON'T WORRY - I WILL SPEAK TO YOU LATER.

[jaymor]

My husband wakes very early 4.30/5.00am and will wake me. He then asks what day it is, what are we doing today,what will I put on and so it goes on. I send him along to the bathroom to wash and shave. I have long ago given up the fight to get him in the bath or shower, I hand him his clothes in the order he has to put them on and then downstairs. I have a quick shower if I am lucky but must admit as he has just been given a place at daycare three days a week, I take a long bath three times a week and wash well on the other days as he is at the bathroom door saying he needs to see me he has something to tell me. He has not told me anything for years, just asks me questions and then argues that the answer I have given is not true. He constantly asks me if I am his wife, are we married, is this our house or when can he go home. At about 5pm he will start yawning, I can tell it is a false yawn, and will ask where his pyjamas are, where is the bedroom in this house. I tell him if he is tired go up to bed but he says he wont go without me, even though he has no idea who I am. I refuse to go to bed before 10pm as I know he will wake even earlier than 4.30am and I just wont be able to cope. The three days at daycare is helping but so far my time has been taken up with clearing out all the mess he has created, visits to doctor, dentist etc and worrying how he is behaving. He is very active and wants to do things but is unable, can't even put a plug into a socket. He can still make a cup of tea but there is a limit to how many cups of tea I can drink in a day. Going out he does enjoy but now is constantly aggitated about where the car is and do I know where I am? As others have said, this terrible disease does not just affect the sufferer and today seems to be a bad day for me. I will go and clear out his bedside table drawers instead of posting on here. Hope everyone has a good a day as is possible and chins up everyone. Jay x

[leedsfan]

My husband wakes very early 4.30/5.00am and will wake me. He then asks what day it is, what are we doing today,what will I put on and so it goes on. I send him along to the bathroom to wash and shave. I have long ago given up the fight to get him in the bath or shower, I hand him his clothes in the order he has to put them on and then downstairs. I have a quick shower if I am lucky but must admit as he has just been given a place at daycare three days a week, I take a long bath three times a week and wash well on the other days as he is at the bathroom door saying he needs to see me he has something to tell me. He has not told me anything for years, just asks me questions and then argues that the answer I have given is not true. He constantly asks me if I am his wife, are we married, is this our house or when can he go home. At about 5pm he will start yawning, I can tell it is a false yawn, and will ask where his pyjamas are, where is the bedroom in this house. I tell him if he is tired go up to bed but he says he wont go without me, even though he has no idea who I am. I refuse to go to bed before 10pm as I know he will wake even earlier than 4.30am and I just wont be able to cope. The three days at daycare is helping but so far my time has been taken up with clearing out all the mess he has created, visits to doctor, dentist etc and worrying how he is behaving. He is very active and wants to do things but is unable, can't even put a plug into a socket. He can still make a cup of tea but there is a limit to how many cups of tea I can drink in a day. Going out he does enjoy but now is constantly aggitated about where the car is and do I know where I am? As others have said, this terrible disease does not just affect the sufferer and today seems to be a bad day for me. I will go and clear out his bedside table drawers instead of posting on here. Hope everyone has a good a day as is possible and chins up everyone. Jay x

I don't actually live with my Dad but I see him two or three times a day. He has just been diagnoses with VasD although he has had symptoms for years. I can feel for you as the constant questioning can really get you down can't it? Through reading other posts on here I am learning to take a deep breathe and not be too sharp with him when he repeats himself or becomes argumentative. Even when I am away from him he's on my mind 24/7 and this is having an effect on my marriage, so I'm having to work at getting things back on track there aswell! I'm glad you get a bit of time to yourself you deserve it. And yes, I'll keep my 'chins' up today. All the best Jane x

[Witzend]

My husband wakes very early 4.30/5.00am and will wake me. He then asks what day it is, what are we doing today,what will I put on and so it goes on. I send him along to the bathroom to wash and shave. I have long ago given up the fight to get him in the bath or shower, I hand him his clothes in the order he has to put them on and then downstairs. I have a quick shower if I am lucky but must admit as he has just been given a place at daycare three days a week, I take a long bath three times a week and wash well on the other days as he is at the bathroom door saying he needs to see me he has something to tell me. He has not told me anything for years, just asks me questions and then argues that the answer I have given is not true. He constantly asks me if I am his wife, are we married, is this our house or when can he go home. At about 5pm he will start yawning, I can tell it is a false yawn, and will ask where his pyjamas are, where is the bedroom in this house. I tell him if he is tired go up to bed but he says he wont go without me, even though he has no idea who I am. I refuse to go to bed before 10pm as I know he will wake even earlier than 4.30am and I just wont be able to cope. The three days at daycare is helping but so far my time has been taken up with clearing out all the mess he has created, visits to doctor, dentist etc and worrying how he is behaving. He is very active and wants to do things but is unable, can't even put a plug into a socket. He can still make a cup of tea but there is a limit to how many cups of tea I can drink in a day. Going out he does enjoy but now is constantly aggitated about where the car is and do I know where I am? As others have said, this terrible disease does not just affect the sufferer and today seems to be a bad day for me. I will go and clear out his bedside table drawers instead of posting on here. Hope everyone has a good a day as is possible and chins up everyone. Jay x

My heart goes out to you, Jay - to you and others on here who are having to live with such utterly exhausting behaviour. I used to think it was a nightmare with my mother, and with my fil before that, but compared to what some other people have to cope with I now realize how relatively 'lucky' we were. x

[babypie]

I had this as well, started at around 6pm , before Dad was diagnosed and if I am to be honest it was what made me ask for a diagnosis, sun downing I believe the early evening disruption is called.

He is most aggressive,nasty,fearful,always saying he is dying and my dead Mom is there and burglars are in the house.

It then went on into the night, as you say, just talking about normal things sometimes at 3am! He is also up a lot of times in night with no concept of time.

It came to a head when he did it a few times and my partner had to be up at 6am to do a 13 hour shift as a nurse. We took the decision to take phone off all night, at around 11.30pm,for our sanity mostly. I leave mobile on and next door to Dad is brilliant and also has his keysafe code.

I think sometimes we do have to think of ourselves really, although its very hard.

Best wishes to you.

[frazzled1]

Hi everyone,

My dad called me yet again today at 5.30 am to ask me what time his sister-in-law is coming to pick him up (I'll give you a clue, Daddy: not in the middle of the friggin night!!) and I'm just fed up, I only got to bed at about 12.45 and I have a massive deadline to hit tomorrow at work that will require me to work well into the night tonight. I cannot function on 5 hours sleep, I am wrecked but I can't get back to sleep so have just got up and sobbed. I'm not a morning person (understatement) and I don't do well with sleep deprivation. Just really, really fed up. Why doesn't he understand that it isn't acceptable to call me at that unholy hour? Sometimes he even apologises for "ringing at this time" when he speaks to me and I find myself thinking "if you KNOW you're waking me up how about you DON'T DO IT???" Would it be unreasonable of me to turn my phone off at night? The reason I don't is he gets confused in the mornings and gets into a panic, and then if he can't get hold of anyone he panics worse. I can't continue to live like this, these are supposed to be my child-free years I don't need to get up at the crack of dawn

Thanks for letting me get that off my chest.

hi there,

Sadly, some people with dementia dont have any notion of the time, date or really ever check messages written for them even if they are placed in front of them. If he gets more confused as the months go by, then he will need a 24/7 carer, but i hope you are very lucky, and things improve for you both

[FiveWords]

Thanks everyone. Dad is certainly getting to the stage where I am thinking about 24-hour care. He needs someone there to reassure him, put him back on track, guide him through the day. However, I pity the poor soul who gets the job I am dreading him having to go into a home because he is terrified, and I mean TERRIFIED of care homes after seeing his mum decline into the very late stages of the disease in a home. I think I would rather leave him at home even if he was at an actual risk of harm there. I'd rather he died relatively happy at home than lived terrified and despairing in a home for many years. That sounds awful doesn't it? But then this is a man that once (when well) made me PROMISE to whack him round the head with a heavy object if he ever got diagnosed with dementia, so I think he would approve of my viewpoint. In reality, it'll never come down to that type of decision because if he becomes a danger to himself, he will also be a danger to others (if he burns his house down, the neighbours' house might catch too! ) so I'll have to intervene in everyone's interests. I wish he was one of those people who will think they are in a hotel and constantly ask when this holiday will end

[Witzend]

Thanks everyone. Dad is certainly getting to the stage where I am thinking about 24-hour care. He needs someone there to reassure him, put him back on track, guide him through the day. However, I pity the poor soul who gets the job I am dreading him having to go into a home because he is terrified, and I mean TERRIFIED of care homes after seeing his mum decline into the very late stages of the disease in a home. I think I would rather leave him at home even if he was at an actual risk of harm there. I'd rather he died relatively happy at home than lived terrified and despairing in a home for many years. That sounds awful doesn't it? But then this is a man that once (when well) made me PROMISE to whack him round the head with a heavy object if he ever got diagnosed with dementia, so I think he would approve of my viewpoint. In reality, it'll never come down to that type of decision because if he becomes a danger to himself, he will also be a danger to others (if he burns his house down, the neighbours' house might catch too! ) so I'll have to intervene in everyone's interests. I wish he was one of those people who will think they are in a hotel and constantly ask when this holiday will end

You never know - you might be lucky. So many CHs are so nice nowadays - and I don't just mean the very expensive ones. Some people whose relatives think will never ever settle in a CH do so a lot faster than they could ever have imagined.

And even if they don't, the fact is, that as they get worse a lot of people become unhappy, confused and fretful even in their own homes, so in the end it can boil down to having them unhappy and at serious risk at home, or unhappy but at least safe, warm and well fed in a CH.

[Canadian Joanne]

I am dreading him having to go into a home because he is terrified, and I mean TERRIFIED of care homes after seeing his mum decline into the very late stages of the disease in a home. I think I would rather leave him at home even if he was at an actual risk of harm there. I'd rather he died relatively happy at home than lived terrified and despairing in a home for many years.

You should consider that eventually you father will lose the concept of being in care. It's always easiest to present it as a temporary measure and if he asks to go home say that he will be "When the doctor says so". It's always better to have someone else to blame, quite honestly. Or say his house is being worked on and "you know how slow workers are now" or whatever excuse works the best for you.

Homes are very different to what they used to be. I recommend you have a look at a few now, before you are even thinking of moving your father, just to get a feel for what things are like.

Do you have the LPAs for both property and personal welfare? I recommend your getting them if your father is still considered competent to sign.

[FiveWords]

I've got the financial LPA but not the health one; the advice I was getting at the time was that wasn't necessary as we are his daughters and next of kin so would get a say in his treatment/care anyway. No way in hell I'm going through the pain of the solicitor's again, so hope that advice had at least some validity . We are going to look at care homes soon, just in case, when we get time. What with my job and my sister's baby boy, goodness knows when that will be!

[FiveWords]

YIt's always easiest to present it as a temporary measure and if he asks to go home say that he will be "When the doctor says so". It's always better to have someone else to blame, quite honestly. Or say his house is being worked on and "you know how slow workers are now" or whatever excuse works the best for you.

Unfortunately dad is sharp as a pin when it comes to knowing he is being lied to or manipulated; if things don't change dramatically I will never, ever get away with lies like that! It'd have to be bargaining rather than lying; something more like "if you live here, I don't have to do so many things for you anymore, so I'll have more time to take you out to the seaside." But I would have to deliver on the seaside bit - he wouldn't let me off that lightly . Which raises a question: can you even take later stage dementia patients to the seaside? Would it be logistically feasible? Would they let him out of the care home for the day? So much to learn

[Chemmy]

But I would have to deliver on the seaside bit - he wouldn't let me off that lightly . Which raises a question: can you even take later stage dementia patients to the seaside? Would it be logistically feasible? Would they let him out of the care home for the day? So much to learn

"We'll see if we can sort something next week, Dad". Always next week , never today There again, maybe a day at the seaside would be nice.

I used to take my mum out of the CH for the day, even when it had to be in a wheelchair. Those were the best visits by far.