Dad has always been anti respite and going in a care home.But he has agreed to go in next week. I have explained that there will be more to do as he is always “bored”.He is going for 2weeks to the home he goes to for a bath once a month.He recognises that he is getting worse but I think the tipping point for him was being 13hours overnight in a wet bed as his urine bag broke overnight..Fingers crossed for you..
Inmate in mums prison
- Thread starter annielou
- Start date
I do hope the four weeks respite pans out @annielou. Obviously I don’t know you but, in reading your thread, you sound to me like a wonderful woman, kind and loving, selfless and self-deprecating. You deserve things to go right for you for a change. As does your poor, dear Mum, bless her heart. Everything is crossed for you both.
Thank you for your replies they mean a lot xxx
Been another up and down day again.
Felt quite rough today as had a bad sinus headache which has been brewing for few days and feeling really tired. Mum has been up and down too.
For once was quite sympathetic and nice about me not feeling well. Usually she either tells me she has worse or worries it will affect me doing something for her. Which was a nice change.
But she was quite snappy this morning and took over an hour to get ready and showered and then I realised she'd just washed in sink not showered, she didn't know why.
She thought I was my sister this mornin, even told SW when phoned and asked to speak to me that it was sis who was there not me.
We went to my house so mum could get out of her house and I could do some washing and housework. I didn't do much other than washing and making dinner as I didnt feel up to it. Mum was good about me not feeling well and didn't moan like usual when I left her to sort washing or when I was quiet.
Later in the afternoon and early evening she got confused again about why at my house, where she lived, did she work there ( thought she came every day and worked in our shop???) the subject of respite and SW came up and she wanted to know what had been said yesterday and why shes not helping us. Then didnt want to go in respite or to day centre or have carers. Why couldnt we all just live together. What was wrong with her, she'd lived on own years and didnt need help. Why didn't I want to see her anymore.
Then went onto. Oh Andie you can't be doing all that, you can't give up your life, I'll have to try it, we'll look at them, how do we find them, you're going to go mental looking after me. I don't want this its not fair on you I'd rather not be here I'm no use.
So there were more tears from both of us. I was giving her a hug and she seemed so small and thin next to me bless her.
When we got back to hers tonight she was ok watching tv but kept asking what doing tomorrow knew somerhing, we're going to gps again for b12 injection so then she wanted write down time to be ready so didnt forget. Kept rereading it every five minutes and asking what meant, what it for. Will I pick her up n go with her, (I'll be here mum I'm staying here.) Are you why? Do you live here, dont you have a house, thought you lived with Hubby, is this your house or mine, wheres my house, so where do you sleep, av you slept before, who other person who stays. And then when got up to go to bed where do I Sleep, do I have a bed, where is it.
She's been in bed a while now and only got up to ask if locked up etc a few times.
Despite still havin headache and been shattered I am still awake, head whirring, though I think I shall go to bed soon.
I've managed to look up a few local care homes online tonight and emailed one near mums house and one near mine, to ask if offer respite and day care just in case manage to get mum to go.
Been another up and down day again.
Felt quite rough today as had a bad sinus headache which has been brewing for few days and feeling really tired. Mum has been up and down too.
For once was quite sympathetic and nice about me not feeling well. Usually she either tells me she has worse or worries it will affect me doing something for her. Which was a nice change.
But she was quite snappy this morning and took over an hour to get ready and showered and then I realised she'd just washed in sink not showered, she didn't know why.
She thought I was my sister this mornin, even told SW when phoned and asked to speak to me that it was sis who was there not me.
We went to my house so mum could get out of her house and I could do some washing and housework. I didn't do much other than washing and making dinner as I didnt feel up to it. Mum was good about me not feeling well and didn't moan like usual when I left her to sort washing or when I was quiet.
Later in the afternoon and early evening she got confused again about why at my house, where she lived, did she work there ( thought she came every day and worked in our shop???) the subject of respite and SW came up and she wanted to know what had been said yesterday and why shes not helping us. Then didnt want to go in respite or to day centre or have carers. Why couldnt we all just live together. What was wrong with her, she'd lived on own years and didnt need help. Why didn't I want to see her anymore.
Then went onto. Oh Andie you can't be doing all that, you can't give up your life, I'll have to try it, we'll look at them, how do we find them, you're going to go mental looking after me. I don't want this its not fair on you I'd rather not be here I'm no use.
So there were more tears from both of us. I was giving her a hug and she seemed so small and thin next to me bless her.
When we got back to hers tonight she was ok watching tv but kept asking what doing tomorrow knew somerhing, we're going to gps again for b12 injection so then she wanted write down time to be ready so didnt forget. Kept rereading it every five minutes and asking what meant, what it for. Will I pick her up n go with her, (I'll be here mum I'm staying here.) Are you why? Do you live here, dont you have a house, thought you lived with Hubby, is this your house or mine, wheres my house, so where do you sleep, av you slept before, who other person who stays. And then when got up to go to bed where do I Sleep, do I have a bed, where is it.
She's been in bed a while now and only got up to ask if locked up etc a few times.
Despite still havin headache and been shattered I am still awake, head whirring, though I think I shall go to bed soon.
I've managed to look up a few local care homes online tonight and emailed one near mums house and one near mine, to ask if offer respite and day care just in case manage to get mum to go.
Well, you'd be in good company here with those feelings. I doubt that anyone who has ever cared for someone with Dementia has not felt like this. There is something unique about Dementia. One person lives with it, and those who care for that person suffer from it! And I've never come across any other terminal illness that generates guilt like Dementia. No matter what or how much we do, we still feel like we should be able to do more. It's a vampire, sucking the life out of those around it. We are left feeling that "If only I could........, then surely everything would be better." Frankly, it won't. We can do our best. Unfortunately, Dementia demands more. And we can't do more, and then Dementia accuses us of not doing enough.
Once I got through the guilt, I realised that providing the best care was all I could do. And of course I couldn't, on my own, provide the same level of care that a fully staffed, fully equipped nursing home could.
Oh @annielou what a day for you both. I know what you mean when you see your Mum so small and frail and helpless, it makes you want to just make it better for her, and getting help with the care provision is the way you can do that - I know it's absolutely heartbreaking and soul destroying to witness. It does sound as though your Mum gets worse in the late afternoon and evening, which is going to be quite key to any care plan going forward. I think you know now that the current situation can't continue, I hope you get the respite sorted to give you a break and to enable you and your sister to have a clear way forward for your Mum's future care. All the best, stay strong and keep posting.
AnnieLou, you are not being selfish at all quite the opposite.
Being a carer is very stressful.
Do what you can for her then after that try to let go. Its very very difficult.
Most people take the easy way, dementia or no dementia, and if someone is already helping them, they will expect that person to do more, to continue to help, regardless of how much the helper can cope with. Its so much easier than accepting help from strangers, or paying for help. There is no way my Mum would have accepted paid help but she didn't have a choice.
I realised that even though Mum had told me countless times that she never wanted to be a burden, that she didn't want me to ever have to look after her, that was the rational thinking mind, but that mind was overtaken by the deep ancestral conditioning once the dementia started to take hold. The deep conditioning said “the Daughters in this family down the generations have always looked after their frail parents, the is how its always done, I have a daughter, the daughter will “do” for me.”
Do you think your Mum would have wanted you to feel like that, put you through so much stress, or is it that her reasoning is not great due to declining capacity?
I had to get an advocate to write a letter to Mums GP, and phone social services multiple times, before she got any help. I kept being told they couldn't make her accept help! It was only because she fell and the carers found her on the floor and called an ambulance, that she got help, and it was only because I pestered her GP that the social services got involved.
Mum did become difficult gradually, and I found it increasingly difficult. She told me about 15 years ago that it upset her when I didnt agree with her, because it meant I didnt love her. I couldnt agree with the way she was living her life, cutting people off, refusing to see the GP when she was ill, etc. When people challenged her she would fly into a rage. I know that had I done more for her she would have asked for more. But everything had to be done her way, which usually meant the hard way. For example bills had to be paid in cash, shopping had to be done in person, at the shop, etc. I now think that the dementia had been creeping up on her even then.
Being a carer is very stressful.
Do what you can for her then after that try to let go. Its very very difficult.
Most people take the easy way, dementia or no dementia, and if someone is already helping them, they will expect that person to do more, to continue to help, regardless of how much the helper can cope with. Its so much easier than accepting help from strangers, or paying for help. There is no way my Mum would have accepted paid help but she didn't have a choice.
I realised that even though Mum had told me countless times that she never wanted to be a burden, that she didn't want me to ever have to look after her, that was the rational thinking mind, but that mind was overtaken by the deep ancestral conditioning once the dementia started to take hold. The deep conditioning said “the Daughters in this family down the generations have always looked after their frail parents, the is how its always done, I have a daughter, the daughter will “do” for me.”
Do you think your Mum would have wanted you to feel like that, put you through so much stress, or is it that her reasoning is not great due to declining capacity?
I had to get an advocate to write a letter to Mums GP, and phone social services multiple times, before she got any help. I kept being told they couldn't make her accept help! It was only because she fell and the carers found her on the floor and called an ambulance, that she got help, and it was only because I pestered her GP that the social services got involved.
Mum did become difficult gradually, and I found it increasingly difficult. She told me about 15 years ago that it upset her when I didnt agree with her, because it meant I didnt love her. I couldnt agree with the way she was living her life, cutting people off, refusing to see the GP when she was ill, etc. When people challenged her she would fly into a rage. I know that had I done more for her she would have asked for more. But everything had to be done her way, which usually meant the hard way. For example bills had to be paid in cash, shopping had to be done in person, at the shop, etc. I now think that the dementia had been creeping up on her even then.
Thanks @LadyA @Pete1 and @Mydarlingdaughter xxx
Mum at times has told me she wishes she had done more for her mum before she died, a neighbour told mum after she died that her mum had been quite lonely. Mum did see her fairly regularly but she had two small children, it was two bus rides to visit, and my dad liked her to be home when he got in from work and wasnt one for visiting so she felt like she couldn't see as much of her as either of them would have liked and feels she didn't do enough for her mum, feels guilty she didnt do more and spend more time with her while she could. I feel like I don't want to feel like that about me and mum but possibly human nature means people usually do feel like that no matter what they do, that they could or should have done more.
Mum flips between telling me she doesnt want to put on me and have me looking after her and she wants me to have a life, to wanting to be with me all the time and just me to look after her.
This afternoon a care home up the street from me that my sister had contacted rang sis and said they may have a space for mums respite and that we could go and look round anytime we wanted, just to pop in. So sis told me and I said I'd try mention it to mum if seemed in receptive mood.
So later on when Mum was talking about being lonely and scared of being alone in her bungalow and getting mixed up and how she used to be ok on her own but now she wasnt, she was not understanding and forgetting more and more and didn't know why it had got so bad but she didnt know if she could do it anymore, I said well if you feel like that why don't you try some help like the social worker suggested. I know its scary having strangers coming in to house to check on you and help but they wont be strangers long. Or you could try respite or day care in a care home. It is scary cos its new and you don't know them but you say its scary at home now so why not try something that might help you feel better.
We chatted for quite a while about trying a home and not having to worry if she'd locked things or if forgot anything and people would be there so not as lonely and mum was quite interested and positive about it.
I told her we could go see one up the road from me and see what thought, she didnt have to commit to going just go for a look.
In the end despite being nervous and saying didnt want a dirty one, or a nasty one and other worries she had, including if we'd still see her at weekends and if she could come out to visit us and me visit her there, she said maybe it would be better for her because she didn't want to go back to her bungalow alone and actually might prefer to stay there.
Unfortunately SW says mum cant go in care home permanently yet so if mum does go into respite and likes it she would have to come back to her home again either alone or with me staying again.
Mum wasnt fond of that so I tried to say see it as a rest to give yourself time to get used to how feeling. You will have seen memory clinic in few weeks and might know cause of your memory problems and you'll have been taking your tablets a bit longer so maybe you'll be feeling bit stronger by then and might be ok to go home and try carers or day centre while living at home.
It does seem a shame that if she did go and settled she'd then have to leave and go back to how we are now.
Of course all this is if she doesn't change her mind again and refuse to go which is quite likely as she did back track a bit later on. She said didn't want to go look this weekend as she hadnt had time to think about it. I said ok but if you want hubby to come (which she had said earlier she did) then it can only be weekends so if don't go this weekend it will have to wait another week so thats another week of being like this before staring doing anything about it. You could go look and then think about it after, you don't have to say straight away.
I have a feeling when I mention it tomorrow she'll say no I'll wait, but I will keep trying and also contact a few more to see if can look just in case.
Mum at times has told me she wishes she had done more for her mum before she died, a neighbour told mum after she died that her mum had been quite lonely. Mum did see her fairly regularly but she had two small children, it was two bus rides to visit, and my dad liked her to be home when he got in from work and wasnt one for visiting so she felt like she couldn't see as much of her as either of them would have liked and feels she didn't do enough for her mum, feels guilty she didnt do more and spend more time with her while she could. I feel like I don't want to feel like that about me and mum but possibly human nature means people usually do feel like that no matter what they do, that they could or should have done more.
Mum flips between telling me she doesnt want to put on me and have me looking after her and she wants me to have a life, to wanting to be with me all the time and just me to look after her.
This afternoon a care home up the street from me that my sister had contacted rang sis and said they may have a space for mums respite and that we could go and look round anytime we wanted, just to pop in. So sis told me and I said I'd try mention it to mum if seemed in receptive mood.
So later on when Mum was talking about being lonely and scared of being alone in her bungalow and getting mixed up and how she used to be ok on her own but now she wasnt, she was not understanding and forgetting more and more and didn't know why it had got so bad but she didnt know if she could do it anymore, I said well if you feel like that why don't you try some help like the social worker suggested. I know its scary having strangers coming in to house to check on you and help but they wont be strangers long. Or you could try respite or day care in a care home. It is scary cos its new and you don't know them but you say its scary at home now so why not try something that might help you feel better.
We chatted for quite a while about trying a home and not having to worry if she'd locked things or if forgot anything and people would be there so not as lonely and mum was quite interested and positive about it.
I told her we could go see one up the road from me and see what thought, she didnt have to commit to going just go for a look.
In the end despite being nervous and saying didnt want a dirty one, or a nasty one and other worries she had, including if we'd still see her at weekends and if she could come out to visit us and me visit her there, she said maybe it would be better for her because she didn't want to go back to her bungalow alone and actually might prefer to stay there.
Unfortunately SW says mum cant go in care home permanently yet so if mum does go into respite and likes it she would have to come back to her home again either alone or with me staying again.
Mum wasnt fond of that so I tried to say see it as a rest to give yourself time to get used to how feeling. You will have seen memory clinic in few weeks and might know cause of your memory problems and you'll have been taking your tablets a bit longer so maybe you'll be feeling bit stronger by then and might be ok to go home and try carers or day centre while living at home.
It does seem a shame that if she did go and settled she'd then have to leave and go back to how we are now.
Of course all this is if she doesn't change her mind again and refuse to go which is quite likely as she did back track a bit later on. She said didn't want to go look this weekend as she hadnt had time to think about it. I said ok but if you want hubby to come (which she had said earlier she did) then it can only be weekends so if don't go this weekend it will have to wait another week so thats another week of being like this before staring doing anything about it. You could go look and then think about it after, you don't have to say straight away.
I have a feeling when I mention it tomorrow she'll say no I'll wait, but I will keep trying and also contact a few more to see if can look just in case.
Last edited:
I think your patience is by virtue of a saint @annielou , but your getting into a loop others have said. I went through the same thing with mum. You go round and then come back and round on yourself. I had alot of other problems before we have reached the stage we are at now. It may be that you have to wait until your mum no longer knows where home is and she speaks to you differently, but you will know when that comes and it isn't always a slow process. I always said until mum didn't know her home anymore she would stay at home, but now she doesn't and in a few weeks she has changed considerably.
This going around in a loop business drives you insane doesn’t it??
Dad going into respite on Wednesday .It took him over 24hours to make this decision,whilst I waited on the sidelines with fingers crossed.
Dad according to docs has capacity so they cannot do a Best Interest meeting even though he needs 24hour care..
So I wait until he gets worse!
It appears that people have to wait for things to get really bad..Ironically dad is self funding but Health and Welfare LPOA doesn’t come into play until lack of capacity...So it appears that this is where we all are at the moment..
@Palerider and @TNJJ yes a loop is whatvwe are definately in. Its like a roundabout we didn't pay to go on and it won't stop to let us off. I've always suffered from travel sickness 
Mum has already started not recognising her home, at first was when she wasn't in it she sometimes couldn't remember it or where it was but last few weeks while shes in it she often doesn't remember where rooms and things are, how many rooms there are and sometimes will say so is this my house, i didnt think it was. Recently she often mentions her stairs and three bedrooms at the house we lived in when I was growing up that shes not lived in for about 25 year but seems to think still does sometimes.
Sis rang mum this morning and while talking about what doing today casually asked mum if she was going to see the care home up my road by its name. 'Where?' Mum said. So sis explained, 'oh no am not going to see it yet. Av not decided yet' Sis said something i think about her looking at it and deciding later as i had said yesterday. 'Oh no i 've not decided yet if I want to go in one, you know me I take ages decide things and then I'll just decide yes or no. So what you doing today?' And that was that.
Sis text me and said wow quick change of subject and quick change of mind. I said yep thats mum. I get that all the time.
Today she thinks she's fine doesn't need any help again.
Though last night she kept asking where her mum was going to sleep. Woke up at 1/4 to 10 thinkin it was 1/4 to 9 and she should be in bed but when I told her it was 1/4 to 10 that was too early to go to bed ?!?! Ten minutes later she was off to bed. Where was that? Where is her bed? Where's her nightie?
Half hour later after countless is the doors locked, is the heating off, you will unplug tele wont u and have you got enough bedding she went quiet and stayed in bed.
Up just after 12 for loo n did her usual peer in check i'm there n back to bed. Then a long spell till after 5 ( not gone that long before yay) same again loo n check i'm there and then up again at half six this time though she didn't settle and half an hour of light on check watch light off and few minutes later repeat she got up at 7 sat on sofa next to where I put my bed peered down at me and said. 'Have I woke you up Andie oh am sorry' so i got up and started folding up my bed. 'You dont have to get up Andie' me 'its ok mum' while thinking cant really sleep with you sat two inch off my head peering at me petal.
After she'd been in shower today I went in to find the clothes she had picked with help from me to wear today were on top of airer, looked at mum and she had dressed in clothes that were on the airer drying. Luckily they were all dry and apart from sleeves of the cardi didnt look creased so she's kept them on and saved the others for tomorrow.
Later this morning she asked why I'd stayed here and was surprised to hear I've been here almost 3 weeks.
Then put the washing on 60 degrees again but luckily I spotted it early enough to restart it at 40.
She's been sat with shoes on and bags ready since 10 despite fact hubby isn't coming for us till 12. She's wrote a list for supermarket with my help and now keeps asking where list is and did she put so and so on list.
Loop de loop again.
Mum has already started not recognising her home, at first was when she wasn't in it she sometimes couldn't remember it or where it was but last few weeks while shes in it she often doesn't remember where rooms and things are, how many rooms there are and sometimes will say so is this my house, i didnt think it was. Recently she often mentions her stairs and three bedrooms at the house we lived in when I was growing up that shes not lived in for about 25 year but seems to think still does sometimes.
Sis rang mum this morning and while talking about what doing today casually asked mum if she was going to see the care home up my road by its name. 'Where?' Mum said. So sis explained, 'oh no am not going to see it yet. Av not decided yet' Sis said something i think about her looking at it and deciding later as i had said yesterday. 'Oh no i 've not decided yet if I want to go in one, you know me I take ages decide things and then I'll just decide yes or no. So what you doing today?' And that was that.
Sis text me and said wow quick change of subject and quick change of mind. I said yep thats mum. I get that all the time.
Today she thinks she's fine doesn't need any help again.
Though last night she kept asking where her mum was going to sleep. Woke up at 1/4 to 10 thinkin it was 1/4 to 9 and she should be in bed but when I told her it was 1/4 to 10 that was too early to go to bed ?!?! Ten minutes later she was off to bed. Where was that? Where is her bed? Where's her nightie?
Half hour later after countless is the doors locked, is the heating off, you will unplug tele wont u and have you got enough bedding she went quiet and stayed in bed.
Up just after 12 for loo n did her usual peer in check i'm there n back to bed. Then a long spell till after 5 ( not gone that long before yay) same again loo n check i'm there and then up again at half six this time though she didn't settle and half an hour of light on check watch light off and few minutes later repeat she got up at 7 sat on sofa next to where I put my bed peered down at me and said. 'Have I woke you up Andie oh am sorry' so i got up and started folding up my bed. 'You dont have to get up Andie' me 'its ok mum' while thinking cant really sleep with you sat two inch off my head peering at me petal.
After she'd been in shower today I went in to find the clothes she had picked with help from me to wear today were on top of airer, looked at mum and she had dressed in clothes that were on the airer drying. Luckily they were all dry and apart from sleeves of the cardi didnt look creased so she's kept them on and saved the others for tomorrow.
Later this morning she asked why I'd stayed here and was surprised to hear I've been here almost 3 weeks.
Then put the washing on 60 degrees again but luckily I spotted it early enough to restart it at 40.
She's been sat with shoes on and bags ready since 10 despite fact hubby isn't coming for us till 12. She's wrote a list for supermarket with my help and now keeps asking where list is and did she put so and so on list.
Loop de loop again.
@Palerider and @TNJJ yes a loop is whatvwe are definately in. Its like a roundabout we didn't pay to go on and it won't stop to let us off. I've always suffered from travel sickness
Mum has already started not recognising her home, at first was when she wasn't in it she sometimes couldn't remember it or where it was but last few weeks while shes in it she often doesn't remember where rooms and things are, how many rooms there are and sometimes will say so is this my house, i didnt think it was. Recently she often mentions her stairs and three bedrooms at the house we lived in when I was growing up that shes not lived in for about 25 year but seems to think still does sometimes.
Sis rang mum this morning and while talking about what doing today casually asked mum if she was going to see the care home up my road by its name. 'Where?' Mum said. So sis explained, 'oh no am not going to see it yet. Av not decided yet' Sis said something i think about her looking at it and deciding later as i had said yesterday. 'Oh no i 've not decided yet if I want to go in one, you know me I take ages decide things and then I'll just decide yes or no. So what you doing today?' And that was that.
Sis text me and said wow quick change of subject and quick change of mind. I said yep thats mum. I get that all the time.
Today she thinks she's fine doesn't need any help again.
Though last night she kept asking where her mum was going to sleep. Woke up at 1/4 to 10 thinkin it was 1/4 to 9 and she should be in bed but when I told her it was 1/4 to 10 that was too early to go to bed ?!?! Ten minutes later she was off to bed. Where was that? Where is her bed? Where's her nightie?
Half hour later after countless is the doors locked, is the heating off, you will unplug tele wont u and have you got enough bedding she went quiet and stayed in bed.
Up just after 12 for loo n did her usual peer in check i'm there n back to bed. Then a long spell till after 5 ( not gone that long before yay) same again loo n check i'm there and then up again at half six this time though she didn't settle and half an hour of light on check watch light off and few minutes later repeat she got up at 7 sat on sofa next to where I put my bed peered down at me and said. 'Have I woke you up Andie oh am sorry' so i got up and started folding up my bed. 'You dont have to get up Andie' me 'its ok mum' while thinking cant really sleep with you sat two inch off my head peering at me petal.
After she'd been in shower today I went in to find the clothes she had picked with help from me to wear today were on top of airer, looked at mum and she had dressed in clothes that were on the airer drying. Luckily they were all dry and apart from sleeves of the cardi didnt look creased so she's kept them on and saved the others for tomorrow.
Later this morning she asked why I'd stayed here and was surprised to hear I've been here almost 3 weeks.
Then put the washing on 60 degrees again but luckily I spotted it early enough to restart it at 40.
She's been sat with shoes on and bags ready since 10 despite fact hubby isn't coming for us till 12. She's wrote a list for supermarket with my help and now keeps asking where list is and did she put so and so on list.
Loop de loop again.
Yes your description is similar to mine though with different traits. This morning I got up to find mum had caused chaos in the kitchen. She'd set the table, taken her cream cakes out of the fridge and other items and put them on the table. She had filled the sugar bowel with flour, which I only noticed when I'd put in my coffee. There were pans on the cooker but nothing in them and tisues everywhere. And believe it or not in the mddle of the table amidst this mess was one jam doughnut -I couldn't believe it
Seems like she was getting ready for some sort of dinner or tea party. Its quite funny to read but not at all funny to deal with is it, all the putting things back and clearing up and wondering how mums mind is working or not working to think of doing it. Bet That coffee tasted awful too. Not a good starr to the day
@annielou, I admire your patience with your mum, but I think if you wait for her to agree to the respite you may be waiting a long tine. It seems she is no longer safe on her own, what do you think might happen if you went home and left her to look after herself?
I think take her to look at possible respite places without saying what they are, you are just popping in for tea and biscuits with some people you know. You’ll get a feel for which one will be best. When she’s safe there you can explore if it will be possible for her to be at home with a care package or if you need to talk to SS about making it a permanent move.
I stand in awe of what you’ve done so far!
I think take her to look at possible respite places without saying what they are, you are just popping in for tea and biscuits with some people you know. You’ll get a feel for which one will be best. When she’s safe there you can explore if it will be possible for her to be at home with a care package or if you need to talk to SS about making it a permanent move.
I stand in awe of what you’ve done so far!
Thanks for replies xxx
@Normaleila & @Sarasa Sw did say that she didn't think mum could manage on her own especially on a night but unfortunately all they can offer is short daytime carer visits and respite. As the LA would be paying for mums care they won't step in until a crisis happens unfortunately. She said that probably wouldn't be long if I stopped supporting and staying with mum. She thought it was too much for me to be here all the time and I should try to step back for my sake but could understand I'd find that hard.
Leaving mum alone and risking mum getting into a major panic and distressed with no one to help or worse risking an emergency happening where she could get hurt is not something I can do.
At her visit SW said mum could have two weeks respite but rang the next day to say had spoke to her manager and they'd agreed to up it to four week and she hoped I could get mum to go.
That's the hard part. Going without mum is a good idea but unfortunately I currently can't go anywhere without mum so can't go look round without her. Since I've been staying with her the last few weeks I've only been out twice without her, less than an hour each time and that was the first week I stayed here, since then I've not been able to go out without her. If I'm out of the room doing something for a while she either shouts me or comes looking for me so it can be a bit difficult to do and sort things without her.
My patience is certainly being tested and I'm reminded why I'm staying with mum tonight as she went to bed about 40 minutes ago and has got up or shouted out to me about fifteen times so far wanting to check heating is off, tele and plugs are off and doors are locked,
She's been doing this each night for varying lengths of time while I've stayed here and it's one of the things she used to get in a state about before. The cause of a few late night early morning calls where we had to come over.
Even with me here she still does it and has added extra things while I've been here but at least I can intercept her as soon as she asks. If I don't tell her they're done as soon as asks she'd be trying to the heating off using advance heating button on control panel which she did a lot before I stayed and since last week a few times she's wanted to use the dials on actual boiler that turn the whole boiler off.
Sometimes she wants to check that doors are locked by unlocking the doors to go out side to check they're locked, so while I've been here I've been able to stop her going out and tell her I've checked them.
Tonight she's added a new worry, has she turned the gas off? She didn't say what gas the first few times but as we've not had anything on I just said it's off, then she said the cooker have I turned the gas off on the cooker. We've not had it on today and I always check the knobs are in off position so I know it is and could tell her it was but now thats a worry for me that if she keeps thinking of that, what will she start doing to check thats off.
Scrap the 40 minutes its now an hour since mum went to bed and shes just git back up to tell me cant sleep because cant stop thinking if done things. She asked why I wasn't ready for bed yet, thete's not much point with mum popping in and out every few minutes bless her.
I better go though and hope for some sleep as we'll be up early.
Night night
@Normaleila & @Sarasa Sw did say that she didn't think mum could manage on her own especially on a night but unfortunately all they can offer is short daytime carer visits and respite. As the LA would be paying for mums care they won't step in until a crisis happens unfortunately. She said that probably wouldn't be long if I stopped supporting and staying with mum. She thought it was too much for me to be here all the time and I should try to step back for my sake but could understand I'd find that hard.
Leaving mum alone and risking mum getting into a major panic and distressed with no one to help or worse risking an emergency happening where she could get hurt is not something I can do.
At her visit SW said mum could have two weeks respite but rang the next day to say had spoke to her manager and they'd agreed to up it to four week and she hoped I could get mum to go.
That's the hard part. Going without mum is a good idea but unfortunately I currently can't go anywhere without mum so can't go look round without her. Since I've been staying with her the last few weeks I've only been out twice without her, less than an hour each time and that was the first week I stayed here, since then I've not been able to go out without her. If I'm out of the room doing something for a while she either shouts me or comes looking for me so it can be a bit difficult to do and sort things without her.
My patience is certainly being tested and I'm reminded why I'm staying with mum tonight as she went to bed about 40 minutes ago and has got up or shouted out to me about fifteen times so far wanting to check heating is off, tele and plugs are off and doors are locked,
She's been doing this each night for varying lengths of time while I've stayed here and it's one of the things she used to get in a state about before. The cause of a few late night early morning calls where we had to come over.
Even with me here she still does it and has added extra things while I've been here but at least I can intercept her as soon as she asks. If I don't tell her they're done as soon as asks she'd be trying to the heating off using advance heating button on control panel which she did a lot before I stayed and since last week a few times she's wanted to use the dials on actual boiler that turn the whole boiler off.
Sometimes she wants to check that doors are locked by unlocking the doors to go out side to check they're locked, so while I've been here I've been able to stop her going out and tell her I've checked them.
Tonight she's added a new worry, has she turned the gas off? She didn't say what gas the first few times but as we've not had anything on I just said it's off, then she said the cooker have I turned the gas off on the cooker. We've not had it on today and I always check the knobs are in off position so I know it is and could tell her it was but now thats a worry for me that if she keeps thinking of that, what will she start doing to check thats off.
Scrap the 40 minutes its now an hour since mum went to bed and shes just git back up to tell me cant sleep because cant stop thinking if done things. She asked why I wasn't ready for bed yet, thete's not much point with mum popping in and out every few minutes bless her.
I better go though and hope for some sleep as we'll be up early.
Night night
Last edited:
I hope you got some sleep @annielou. You really are in a Catch 22 situation with regard to the respite aren’t you. Is there no way your sister could check out the home and if she thinks it is ok, she and you take Mum up there without telling her that’s where she’s going? Maybe if she just spent one night there she would see that being with people 24/7 would benefit her. I understand there is no legal basis for you taking this action but something has to give and I completely agree with you that it would be emotionally impossible for you to leave her to develop a crisis. If there is to be one, I just hope the crisis doesn’t involve carer breakdown.
We have no legal right to place Mum into respite as we don’t have H&W PoA (long story) but she will be going for the first time at the end of this month (we are lucky to be self funding). Mum’s dementia manifests itself in anxiety rather than aggression, although she’s not as bad as your Mum, I recognize many of the behaviours you record. We’re going to have to try the “take her there, leave her there and pray she settles” technique. Her GP has recorded that she doesn’t have capacity but if she was independently tested I sometimes wonder if we’d get a different result as she can be quite lucid at times. I dread having to go down a DoL order path. Anyway, she needs people around her all of the time now so we’re trying 2 weeks respite in the hope that she indicates she’d like to stay voluntarily. Maybe, just maybe, you could try the same?
We have no legal right to place Mum into respite as we don’t have H&W PoA (long story) but she will be going for the first time at the end of this month (we are lucky to be self funding). Mum’s dementia manifests itself in anxiety rather than aggression, although she’s not as bad as your Mum, I recognize many of the behaviours you record. We’re going to have to try the “take her there, leave her there and pray she settles” technique. Her GP has recorded that she doesn’t have capacity but if she was independently tested I sometimes wonder if we’d get a different result as she can be quite lucid at times. I dread having to go down a DoL order path. Anyway, she needs people around her all of the time now so we’re trying 2 weeks respite in the hope that she indicates she’d like to stay voluntarily. Maybe, just maybe, you could try the same?
I was up most of the night last night @annielou, as I was going to bed at midnight mum was getting up, I slept for an hour until I got woken and have been sat dosing keeping one eye open.This morining she is demanding to go 'out' but doesn't know where. I think in this situation its impossible for one person to carry on or sustain it long term. I know I am beginning to struggle now, you must feel the same.
Thanks @Rosalind297 unfortunately sis lives 3&1/2 hours away and can't be here a lot. She has been doing a lot of looking things up, online form filling and ringing round, which I struggle to do being with mum all the time and her wanting my attention. Sis may be able to come down next weekend so if she does I will try again to see if mum will go look with us and if not see if sis can.
We dont have any say over what mum does, SW asked if we had poa or lpa for mum and I said no. She said she thought it was too late now for mum to give it so at minute unfortunately we're stuck with mum deciding, unless something like a crisis happens and then neither mum nor us will have a say and SS will step in and decide.
SW mentioned DOLs when talking about finding a respite home for mum as she said otherwise mum could just leave. I meant to look it up after she'd gone as I wasn't really sure what it was but got caught up talking to mum and had sort of half forgot it till now. I must go goofle it.
I hope your mum settles in her respite at end of month and it goes well. Seeing them anxious so much of the time is awful isn't it. I try my best to answer and allay mums fears but she forgets what I say and it soon comes back or she worries about something else.
@Palerider sorry you had a bad night x I hope tonight is better for you x
It is really hard to manage a day of constant attention on very little broken sleep.
I had a bad one too, though its pretty normal for mum.
Midnight must have been the time for waking mums last night. Mum too got up at midnight (after her last time of asking is the door locked etc at about twenty past eleven), she got up as I had just finished making up my bed and getting in it. She seemed quite annoyed and was quite snappy with me, she wasn't making much sense but she seemed to be intent on getting some bedding from the hallway near front door for my sister. I tried to get her back to bed gently but she wasnt too impressed with me and telling her she didnt need bedding, sister wasnt here and she doesnt keep bedding in there anyway just got her grumpier but she did go to bed. Albeit chuntering her favourite retort that I always have to be right! And moaning in bed to herself for five minutes about me interfering when shes trying to do something. We had a couple more loo visits and checking I was there before her half six light on check time light off routine started until she got us up at 7. In between mums grumpy bedding search and the next loo visits about 2 in the mornin a neighbour was getting in and out shutting taxi doors for about five minutes, probably going on holiday, which woke me up too.
We're thinking of going out somewhere today too though I don't know where as mums legs get tired really quickly and ten minutes into a shop she just looks shattered and not with it.
I hope you get more sleep tonight and a more setlled couple of days to prepare for your mums upcoming respite as I imagine you'll both need your strength for that day. X
We dont have any say over what mum does, SW asked if we had poa or lpa for mum and I said no. She said she thought it was too late now for mum to give it so at minute unfortunately we're stuck with mum deciding, unless something like a crisis happens and then neither mum nor us will have a say and SS will step in and decide.
SW mentioned DOLs when talking about finding a respite home for mum as she said otherwise mum could just leave. I meant to look it up after she'd gone as I wasn't really sure what it was but got caught up talking to mum and had sort of half forgot it till now. I must go goofle it.
I hope your mum settles in her respite at end of month and it goes well. Seeing them anxious so much of the time is awful isn't it. I try my best to answer and allay mums fears but she forgets what I say and it soon comes back or she worries about something else.
@Palerider sorry you had a bad night x I hope tonight is better for you x
It is really hard to manage a day of constant attention on very little broken sleep.
I had a bad one too, though its pretty normal for mum.
Midnight must have been the time for waking mums last night. Mum too got up at midnight (after her last time of asking is the door locked etc at about twenty past eleven), she got up as I had just finished making up my bed and getting in it. She seemed quite annoyed and was quite snappy with me, she wasn't making much sense but she seemed to be intent on getting some bedding from the hallway near front door for my sister. I tried to get her back to bed gently but she wasnt too impressed with me and telling her she didnt need bedding, sister wasnt here and she doesnt keep bedding in there anyway just got her grumpier but she did go to bed. Albeit chuntering her favourite retort that I always have to be right! And moaning in bed to herself for five minutes about me interfering when shes trying to do something. We had a couple more loo visits and checking I was there before her half six light on check time light off routine started until she got us up at 7. In between mums grumpy bedding search and the next loo visits about 2 in the mornin a neighbour was getting in and out shutting taxi doors for about five minutes, probably going on holiday, which woke me up too.
We're thinking of going out somewhere today too though I don't know where as mums legs get tired really quickly and ten minutes into a shop she just looks shattered and not with it.
I hope you get more sleep tonight and a more setlled couple of days to prepare for your mums upcoming respite as I imagine you'll both need your strength for that day. X
Last edited:
Recent Threads
-
-
-
-
-
-
-
Just waiting for now. Exhausted. (26F)
- Latest: Lillian Magellan
-
