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It’s so difficult getting help and I’m spinning

Just me

Registered User
Nov 17, 2013
386
At the beginning of the year I knew the time had come to look at care homes for mum then the pandemic struck.

It was always going to be a tough decision to move her to a care home and something neither of us wanted but it’s what she needs. Given the risks and restrictions due to COVID-19 I decided to wait until things were a little more settled.

Lockdown has accelerate mums condition, no day care, trips out and having me in the house all the time. Now she wanders around all the time saying she’s frightened, terrified, can’t see, doesn’t know where she is and gets angry and chunters away, mostly cursing me 😊. She gets separation anxiety and gets really upset and starts shouting if I don’t hear her and go to her straight away.
On top of this she’s started to get up throughout the night, not being able to find the toilet and it’s been hard to get her settled. It’s heartbreaking seeing her like this and increasingly difficult to deal with as I’m just not getting much sleep.

Last night was horrible. She got up at 12 pm, 1am, 2am. Each time I got her back to bed but after a while she’d get up again. Around 3am she came into my room, patting my bed, putting my glasses on moving things off the dresser, and she wouldn’t let me take her back to bed. She got angry, started shouting and grabbed my arms and wouldn't let go barring my way. I was so tired and my heart was pounding and it’s hard seeing my gentle laid back mum acting like this.

I’d spoken to an Admiral Nurse yesterday as I know she needs 24 hour care but also that she won’t go willingly. Today I was going to ring Adult Social Care and the GP to discuss the question of mental capacity.

After last night I decided to ring the memory clinic to see if they could help with mums distress before I rang the others. They had previously tried mum on Risperidone which didn’t agreed with her. Mum has vascular dementia and I knew there was no treatment but I was thinking of something like Valium. I was told there was nothing they could do.

I then rang Adult Social Care for a needs assessment and a Carers assessment. I was asked what I was expecting to get out of an assessment as if they did a needs assessment for mum then my needs would be dealt with, they didn’t offer gym membership anymore - as if I had the time or energy to go to a gym! Not being able to think straight through lack of sleep and this being new to me I didn’t know what to say. I gave my address and they said they don’t cover the area I lived in. Thank goodness.
The number I rang was given to me from the memory clinic but it was for the city ASC not the county ASC.

I then rang the correct number and got a better reception but it seems little point in involving them. As mum will be self funding at least at the beginning they said I could arrange a care home (which I already knew) and if they did it it would cost £400 and a yearly admin fee of £180. I said I was contacting them as I didn’t think mum would go willing to a care home and I had been told that she needed a mental capacity assessment. I was in tears by this time. I’ve been told the referral had been marked as priority and someone will call me in the next few days. I’ve no idea what they’ll ask as it seems there’s little or no support if you are self funding but hopefully I’ll get information about mums reluctance to move into care.

I then rang the GP and told them how upset mum was and what had happened last night and who’d I’d rang and what they said. The GP has offered to prescribe either Lorezepan or Mirtazapine. I’m ringing tomorrow after I’ve done a bit of research into these medications.

I’ve been looking after mum for over 5 years and have done the best that I can but now I’m out of my depth. I felt abandoned when she was first diagnosed (I’ve got bad news, you have vascular dementia. There is nothing we can do) and it’s been an uphill struggle ever since.

People say I’m strong but I’m not.

I hate, hate this cruel disease.
 

annielou

Registered User
Sep 27, 2019
1,697
Yorkshire
I'm so sorry you're having such a horribly tough time trying to get help, it's really awful. I wish I had something helpful to suggest and could sort it for you, for everyone x 🤗
Its like banging your head against a wall isn't it. Its heartbreaking asking for help and not getting it, thinking surely someone somewhere can help us somehow. I'm constantly amazed and disgusted when I read how people are treated, it's like oh well that's the disease there's nothing we can do for it so just learn to live with it, it can't be fixed so just manage and don't bother us. It makes me want to scream and cry. I really hope one of the medicines GP has offered helps calm your poor mum. Its a horrible situation for your mum and you. I hope you finally found something that might help a bit.
I remember when I was staying with mum last winter she would be up and down some nights confused and upset and wanting me there all the time, the lack of sleep for both of you I think makes everything so much harder too. Setraline really helped my mum for a while so I could go back home and she was calm enough to stay home alone on a night, unfortunately after a while it stopped working as well and things moved on but it did help mum so I hope GP has something that can help your mum and in turn you.
I don't know how things work if self funding as my mum's not, but for us the SWs who saw mum kept saying she still had capacity, it was fluctuating capacity, but they said she was still able to make her own decisions even though they may be unwise ones. She kept refusing carers and a CH and still is, though now she's ended up in hospital and it looks like they're finally going to do something, though I'm still scared they won't. The hospital OT told me the other day mum can't make decisions about her care as she doesn't understand the consequences and doesn't have the higher level thinking required to process and reason what she's deciding on. I thought that's what I've been saying to SWs I'm glad to hear someone realises it. I hope you get your assessment for your mum soon. I hope you both get some help soon 🤞
I too hate this cruel disease and also the way people with it are treated and left to cope. Sorry I've nothing helpful to offer and I hope my rant didn't upset you. Sending a virtual hug in lieu of useful help and I will keep hoping you get help soon 🤗
 

Cazzita

Registered User
May 12, 2018
591
Hello @Just me , So sorry to hear about your situation with your mum. It's a horrible and cruel disease that changes our mothers into people we no longer know. It's heartbreaking and exhausting.
It sounds like you are on the right path realising your mum needs 24 hour care as you cannot possibly sustain nights like that. It so distressing.
As your mum is self-funding, I would start looking for a dementia specialist care home asap, call them and discuss fees etc. I did this and had a really lovely conversation with the manager and just had a good feeling that this care home would be great for my mum. She has been in a month now and is so settled and best of all, safe and looked after. I cannot tell you how much of a difference it has made to me. Yes, I felt guilt initially, but not now. I now have energy to do other things in my life and I call the home regularly and visit mum 3 times per week, socially distanced of course.
Adult SS were just no help at all to me as mum was also a self-funder. The only reason they would need to do a care assessment is so they have something on record if she needs financial help later on.
I wish you luck with the future and hope you get this resolved quickly. Best wishes x
 

TNJJ

Registered User
May 7, 2019
1,773
cornwall
At the beginning of the year I knew the time had come to look at care homes for mum then the pandemic struck.

It was always going to be a tough decision to move her to a care home and something neither of us wanted but it’s what she needs. Given the risks and restrictions due to COVID-19 I decided to wait until things were a little more settled.

Lockdown has accelerate mums condition, no day care, trips out and having me in the house all the time. Now she wanders around all the time saying she’s frightened, terrified, can’t see, doesn’t know where she is and gets angry and chunters away, mostly cursing me 😊. She gets separation anxiety and gets really upset and starts shouting if I don’t hear her and go to her straight away.
On top of this she’s started to get up throughout the night, not being able to find the toilet and it’s been hard to get her settled. It’s heartbreaking seeing her like this and increasingly difficult to deal with as I’m just not getting much sleep.

Last night was horrible. She got up at 12 pm, 1am, 2am. Each time I got her back to bed but after a while she’d get up again. Around 3am she came into my room, patting my bed, putting my glasses on moving things off the dresser, and she wouldn’t let me take her back to bed. She got angry, started shouting and grabbed my arms and wouldn't let go barring my way. I was so tired and my heart was pounding and it’s hard seeing my gentle laid back mum acting like this.

I’d spoken to an Admiral Nurse yesterday as I know she needs 24 hour care but also that she won’t go willingly. Today I was going to ring Adult Social Care and the GP to discuss the question of mental capacity.

After last night I decided to ring the memory clinic to see if they could help with mums distress before I rang the others. They had previously tried mum on Risperidone which didn’t agreed with her. Mum has vascular dementia and I knew there was no treatment but I was thinking of something like Valium. I was told there was nothing they could do.

I then rang Adult Social Care for a needs assessment and a Carers assessment. I was asked what I was expecting to get out of an assessment as if they did a needs assessment for mum then my needs would be dealt with, they didn’t offer gym membership anymore - as if I had the time or energy to go to a gym! Not being able to think straight through lack of sleep and this being new to me I didn’t know what to say. I gave my address and they said they don’t cover the area I lived in. Thank goodness.
The number I rang was given to me from the memory clinic but it was for the city ASC not the county ASC.

I then rang the correct number and got a better reception but it seems little point in involving them. As mum will be self funding at least at the beginning they said I could arrange a care home (which I already knew) and if they did it it would cost £400 and a yearly admin fee of £180. I said I was contacting them as I didn’t think mum would go willing to a care home and I had been told that she needed a mental capacity assessment. I was in tears by this time. I’ve been told the referral had been marked as priority and someone will call me in the next few days. I’ve no idea what they’ll ask as it seems there’s little or no support if you are self funding but hopefully I’ll get information about mums reluctance to move into care.

I then rang the GP and told them how upset mum was and what had happened last night and who’d I’d rang and what they said. The GP has offered to prescribe either Lorezepan or Mirtazapine. I’m ringing tomorrow after I’ve done a bit of research into these medications.

I’ve been looking after mum for over 5 years and have done the best that I can but now I’m out of my depth. I felt abandoned when she was first diagnosed (I’ve got bad news, you have vascular dementia. There is nothing we can do) and it’s been an uphill struggle ever since.

People say I’m strong but I’m not.

I hate, hate this cruel disease.
Hi. My dad has VD and is prescient Mirtazapine. This does settle him and helps him sleep.
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,829
Nottinghamshire
Hi @Just me

You sound exhausted. I think you’re right that your mum now needs a carehome and you can’t possibly manage her needs all by yourself. @Cazzita has given you good advice and I hope you can find the strength to pick up the phone and make some calls to find your mum a suitable home.
 

lemonbalm

Registered User
May 21, 2018
664
Hello @Just me . It does sound as though it is time for a care home. I think we all feel guilty at this point because although we know deep down that it's the right thing to do, it feels so wrong at the same time. You can tell your mum that it's little holiday at first. There are lots of "love lies" and techniques to use when the time comes and the forum can give you plenty of ideas and support there.

My mum is self funding and I had no involvement with Social Services but found https://www.carehome.co.uk/ really useful when looking for a suitable place. My mum has vascular dementia and is given medication, including Mirtazapine, which does help with her agitation. Lorazapam might make your mum a bit drowsy and so can increase risk of falls.

Take a look around for care homes and let us know how you get on. Your mum will hopefully feel more secure with people around her all the time, so it may well work out a lot better than you fear.
 

Just me

Registered User
Nov 17, 2013
386
Than
I'm so sorry you're having such a horribly tough time trying to get help, it's really awful. I wish I had something helpful to suggest and could sort it for you, for everyone x 🤗
Its like banging your head against a wall isn't it. Its heartbreaking asking for help and not getting it, thinking surely someone somewhere can help us somehow. I'm constantly amazed and disgusted when I read how people are treated, it's like oh well that's the disease there's nothing we can do for it so just learn to live with it, it can't be fixed so just manage and don't bother us. It makes me want to scream and cry. I really hope one of the medicines GP has offered helps calm your poor mum. Its a horrible situation for your mum and you. I hope you finally found something that might help a bit.
I remember when I was staying with mum last winter she would be up and down some nights confused and upset and wanting me there all the time, the lack of sleep for both of you I think makes everything so much harder too. Setraline really helped my mum for a while so I could go back home and she was calm enough to stay home alone on a night, unfortunately after a while it stopped working as well and things moved on but it did help mum so I hope GP has something that can help your mum and in turn you.
I don't know how things work if self funding as my mum's not, but for us the SWs who saw mum kept saying she still had capacity, it was fluctuating capacity, but they said she was still able to make her own decisions even though they may be unwise ones. She kept refusing carers and a CH and still is, though now she's ended up in hospital and it looks like they're finally going to do something, though I'm still scared they won't. The hospital OT told me the other day mum can't make decisions about her care as she doesn't understand the consequences and doesn't have the higher level thinking required to process and reason what she's deciding on. I thought that's what I've been saying to SWs I'm glad to hear someone realises it. I hope you get your assessment for your mum soon. I hope you both get some help soon 🤞
I too hate this cruel disease and also the way people with it are treated and left to cope. Sorry I've nothing helpful to offer and I hope my rant didn't upset you. Sending a virtual hug in lieu of useful help and I will keep hoping you get help soon 🤗
Thanks for the support @annielou and no your rant didn’t upset me. I’ve followed your posts and see many similarities between us x

Hello @Just me , So sorry to hear about your situation with your mum. It's a horrible and cruel disease that changes our mothers into people we no longer know. It's heartbreaking and exhausting.
It sounds like you are on the right path realising your mum needs 24 hour care as you cannot possibly sustain nights like that. It so distressing.
As your mum is self-funding, I would start looking for a dementia specialist care home asap, call them and discuss fees etc. I did this and had a really lovely conversation with the manager and just had a good feeling that this care home would be great for my mum. She has been in a month now and is so settled and best of all, safe and looked after. I cannot tell you how much of a difference it has made to me. Yes, I felt guilt initially, but not now. I now have energy to do other things in my life and I call the home regularly and visit mum 3 times per week, socially distanced of course.
Adult SS were just no help at all to me as mum was also a self-funder. The only reason they would need to do a care assessment is so they have something on record if she needs financial help later on.
I wish you luck with the future and hope you get this resolved quickly. Best wishes x
Thanks for replying @Cazzita.
I have got a home in mind that has a specialist dementia unit and I contacted them way back in June and completed part of the assessment. I’ve not been able to have a look around but a friends father is there (not with dementia). I’ve spoken to a couple of the staff and they were far more friendly and helpful than others I rang and it seems the right place. Called them yesterday and they have vacancies and the manager is going to call on Monday when they’re back from leave.

I know it’s the right decision to make but it’s so hard. If it were just my feelings I’d be reasonably ok but there is only the two of us, best friends really and since diagnosis mum has relied on me more and more. When I mentioned a care home back in June saying things like it’ll be a little holiday, they have hairdressers and it’ll be nice people like at day care she just got scared and said ‘I don’t want to loose you’ and she’s said similar things since. I know it wouldn’t have been as bad if she could have met the staff and frankly I don’t know how I’ll actually get her there with social distancing and friends not being able to help. It’s so emotional and I need to harden up. It’s also the thought of her being in isolation for 2 weeks and then no visits and I’m worried how this will affect her.

Thanks for the info about ASC and knowing that’s this is how they operate x
 

Just me

Registered User
Nov 17, 2013
386
Thank you, that’s helpful x
Hi @Just me

You sound exhausted. I think you’re right that your mum now needs a carehome and you can’t possibly manage her needs all by yourself. @Cazzita has given you good advice and I hope you can find the strength to pick up the phone and make some calls to find your mum a suitable home.
Thank you x
Hello @Just me . It does sound as though it is time for a care home. I think we all feel guilty at this point because although we know deep down that it's the right thing to do, it feels so wrong at the same time. You can tell your mum that it's little holiday at first. There are lots of "love lies" and techniques to use when the time comes and the forum can give you plenty of ideas and support there.

My mum is self funding and I had no involvement with Social Services but found https://www.carehome.co.uk/ really useful when looking for a suitable place. My mum has vascular dementia and is given medication, including Mirtazapine, which does help with her agitation. Lorazapam might make your mum a bit drowsy and so can increase risk of falls.

Take a look around for care homes and let us know how you get on. Your mum will hopefully feel more secure with people around her all the time, so it may well work out a lot better than you fear.
I know your right I’m just an emotional mess at the minute. I was thinking of Lorezepan as it’s not long term but the risk of falls is a big worry. Not sure if Mirtazapine has the same effect and I know it takes longer to start working. I think the doctor is concerned that both of us are not getting much sleep but I want something to help the distress she’s suffering not something that will knock her out x

Hi @Just me

You sound exhausted. I think you’re right that your mum now needs a carehome and you can’t possibly manage her needs all by yourself. @Cazzita has given you good advice and I hope you can find the strength to pick up the phone and make some calls to find your mum a suitable home.
Thank you, i think the home I’ve contacted seems ok, so hard when you can’t have a look around. I hope I’ll find the strength too x
 

Wildflowerlady

Registered User
Sep 30, 2019
203
Hi @justme
I feel your stress as my dad's dementia has accelerated during lockdown. I don't live with dad he lives alone but with 4 daily care visits plus sister and I going in at different times. My dad is very verbal aggressive although that has been going on a long time but the last 2 weeks accelerated now destroying stuff in his home, its physical threats now to carers since last week pulling a knife from under his cushion yesterday. We are awaiting news today as GP and Adult Social Care all aware of what's going on I am told it will be classed urgent as safe guarding issues. I hope you get the help you need asap. I will be relieved when I know my dad has 24/7 care as I know we really have done all we can. We have looked after dad so that he could stay in his home for four years and it's been absolutely draining.
 

Cazzita

Registered User
May 12, 2018
591
Than

Thanks for the support @annielou and no your rant didn’t upset me. I’ve followed your posts and see many similarities between us x



Thanks for replying @Cazzita.
I have got a home in mind that has a specialist dementia unit and I contacted them way back in June and completed part of the assessment. I’ve not been able to have a look around but a friends father is there (not with dementia). I’ve spoken to a couple of the staff and they were far more friendly and helpful than others I rang and it seems the right place. Called them yesterday and they have vacancies and the manager is going to call on Monday when they’re back from leave.

I know it’s the right decision to make but it’s so hard. If it were just my feelings I’d be reasonably ok but there is only the two of us, best friends really and since diagnosis mum has relied on me more and more. When I mentioned a care home back in June saying things like it’ll be a little holiday, they have hairdressers and it’ll be nice people like at day care she just got scared and said ‘I don’t want to loose you’ and she’s said similar things since. I know it wouldn’t have been as bad if she could have met the staff and frankly I don’t know how I’ll actually get her there with social distancing and friends not being able to help. It’s so emotional and I need to harden up. It’s also the thought of her being in isolation for 2 weeks and then no visits and I’m worried how this will affect her.

Thanks for the info about ASC and knowing that’s this is how they operate x
Hello again,
I know what you mean. I dreaded the day when mum was going in and told her things like you are going in for a little while to keep you safe and see if you like it. She always told me not to put her in a home and I kept her at home as long as I possibly could but it was incredibly draining and I had no life of my own.
Fortunately, without any visits at all to the home beforehand, mum settled in really well. She loves her little room and the staff are incredibly caring with good management too. It's a HUGE relief.
Mum didn't have to quarantine in her room for 4 weeks but I had to get her tested for COVID just before going in to make sure she was clear, that's all.
It was emotional on the day, but they greeted us in the car park, made a big fuss of her and just took her in and told me go off and call back later.
One month later, no issues at all. She is eating and sleeping and has company. I wish I had done it a year ago to be honest.
Good luck and keep us posted xx
 

Just me

Registered User
Nov 17, 2013
386
Well I’ve got someone from a care home coming on Wednesday to meet mum and me and do an assessment.

I’ve read about all the tips of getting someone into residential care when they are reluctant but the thing with mum is she knows there’s something ‘wrong’ with her and questions everything and I want to try and get her agreement to make the move easier.
Probably wishful thinking but I need to try to see if she’s more willing after the visit.

I’ve posted another thread asking for help about what questions to on Wednesday.

Thanks for all your support x
 

Claireyeddy

Registered User
Sep 21, 2020
35
At the beginning of the year I knew the time had come to look at care homes for mum then the pandemic struck.

It was always going to be a tough decision to move her to a care home and something neither of us wanted but it’s what she needs. Given the risks and restrictions due to COVID-19 I decided to wait until things were a little more settled.

Lockdown has accelerate mums condition, no day care, trips out and having me in the house all the time. Now she wanders around all the time saying she’s frightened, terrified, can’t see, doesn’t know where she is and gets angry and chunters away, mostly cursing me 😊. She gets separation anxiety and gets really upset and starts shouting if I don’t hear her and go to her straight away.
On top of this she’s started to get up throughout the night, not being able to find the toilet and it’s been hard to get her settled. It’s heartbreaking seeing her like this and increasingly difficult to deal with as I’m just not getting much sleep.

Last night was horrible. She got up at 12 pm, 1am, 2am. Each time I got her back to bed but after a while she’d get up again. Around 3am she came into my room, patting my bed, putting my glasses on moving things off the dresser, and she wouldn’t let me take her back to bed. She got angry, started shouting and grabbed my arms and wouldn't let go barring my way. I was so tired and my heart was pounding and it’s hard seeing my gentle laid back mum acting like this.

I’d spoken to an Admiral Nurse yesterday as I know she needs 24 hour care but also that she won’t go willingly. Today I was going to ring Adult Social Care and the GP to discuss the question of mental capacity.

After last night I decided to ring the memory clinic to see if they could help with mums distress before I rang the others. They had previously tried mum on Risperidone which didn’t agreed with her. Mum has vascular dementia and I knew there was no treatment but I was thinking of something like Valium. I was told there was nothing they could do.

I then rang Adult Social Care for a needs assessment and a Carers assessment. I was asked what I was expecting to get out of an assessment as if they did a needs assessment for mum then my needs would be dealt with, they didn’t offer gym membership anymore - as if I had the time or energy to go to a gym! Not being able to think straight through lack of sleep and this being new to me I didn’t know what to say. I gave my address and they said they don’t cover the area I lived in. Thank goodness.
The number I rang was given to me from the memory clinic but it was for the city ASC not the county ASC.

I then rang the correct number and got a better reception but it seems little point in involving them. As mum will be self funding at least at the beginning they said I could arrange a care home (which I already knew) and if they did it it would cost £400 and a yearly admin fee of £180. I said I was contacting them as I didn’t think mum would go willing to a care home and I had been told that she needed a mental capacity assessment. I was in tears by this time. I’ve been told the referral had been marked as priority and someone will call me in the next few days. I’ve no idea what they’ll ask as it seems there’s little or no support if you are self funding but hopefully I’ll get information about mums reluctance to move into care.

I then rang the GP and told them how upset mum was and what had happened last night and who’d I’d rang and what they said. The GP has offered to prescribe either Lorezepan or Mirtazapine. I’m ringing tomorrow after I’ve done a bit of research into these medications.

I’ve been looking after mum for over 5 years and have done the best that I can but now I’m out of my depth. I felt abandoned when she was first diagnosed (I’ve got bad news, you have vascular dementia. There is nothing we can do) and it’s been an uphill struggle ever since.

People say I’m strong but I’m not.

I hate, hate this cruel disease.
I've just read your message and your situation sounds very similar to ours, particularly for my Dad who has been caring for my nan for about 5 years. We are really struggling to get this mental capacity assessment out of anyone in order to act in her best interests, so thankyou for sharing. I really hope someone can provide some advice! x

(p.s. You are strong to have dealt with this on your own for as long as you have. x)
 

Just me

Registered User
Nov 17, 2013
386
I've just read your message and your situation sounds very similar to ours, particularly for my Dad who has been caring for my nan for about 5 years. We are really struggling to get this mental capacity assessment out of anyone in order to act in her best interests, so thankyou for sharing. I really hope someone can provide some advice! x

(p.s. You are strong to have dealt with this on your own for as long as you have. x)
Thank you x