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help/advise/ don't know what we are doing

Mummymummum

New member
Sep 18, 2020
3
Hi,

My mum was diagnosed with mixed dementia around March last year. She was apparently in early stages back then.
A bit of background, my sister never moved out of the family home so naturally has been mums main carer (didn't need much care until recently) I live two buses journeys away with my primary school aged daughter (work from home part time currently) and my partner. (The only driver between us but he works long hours) .
We think the pandemic has made mum worse. She lives for my daughter and missed her greatly the months we kept away as we thought we were protecting mum.
To not write a massive long post. We've been visiting again but keeping visits to the garden or taking her out in the wheelchair with windows down now DD is back in school. Until the last few weeks we didn't really notice how much mum had deteriorated or how much it was affecting my sister coming home from work and then having to look after mum.
We are now trying to work together better as a team.
My sisters contacted the local mental health team who have put her in contact with a social worker. Do social workers only work short hours, only we are struggling to arrange a home visit around work etc. During the current situation is it normal for them to say we both can't attend the home visit?
Will the social worker sort all mums needs or will we need to arrange anything else ourselves?
We are applying for a blue badge for when we take her out and also POA.
Is there anything else we need to do?
For those who look after parents in their own home or your home how do you currently ensure that the risk of contracting covid is low? We are thinking of having mum once a month for a weekend so sister gets a little break but worry that DD could pass something on (No social distancing in school, bubble size is 25 in class and then because two form entry 50 when playing out)
Thanks and sorry for all the questions and sorry if I've posted in the wrong place.
 

TNJJ

Registered User
May 7, 2019
1,780
cornwall
Hi,

My mum was diagnosed with mixed dementia around March last year. She was apparently in early stages back then.
A bit of background, my sister never moved out of the family home so naturally has been mums main carer (didn't need much care until recently) I live two buses journeys away with my primary school aged daughter (work from home part time currently) and my partner. (The only driver between us but he works long hours) .
We think the pandemic has made mum worse. She lives for my daughter and missed her greatly the months we kept away as we thought we were protecting mum.
To not write a massive long post. We've been visiting again but keeping visits to the garden or taking her out in the wheelchair with windows down now DD is back in school. Until the last few weeks we didn't really notice how much mum had deteriorated or how much it was affecting my sister coming home from work and then having to look after mum.
We are now trying to work together better as a team.
My sisters contacted the local mental health team who have put her in contact with a social worker. Do social workers only work short hours, only we are struggling to arrange a home visit around work etc. During the current situation is it normal for them to say we both can't attend the home visit?
Will the social worker sort all mums needs or will we need to arrange anything else ourselves?
We are applying for a blue badge for when we take her out and also POA.
Is there anything else we need to do?
For those who look after parents in their own home or your home how do you currently ensure that the risk of contracting covid is low? We are thinking of having mum once a month for a weekend so sister gets a little break but worry that DD could pass something on (No social distancing in school, bubble size is 25 in class and then because two form entry 50 when playing out)
Thanks and sorry for all the questions and sorry if I've posted in the wrong place.
Hi! I help look after my dad at home with carers. I do not live with him.
Have you applied for Attendance Allowance. Also a reduction in Council Tax via Mentally Impaired Certificate. The doctor needs to sign it.
Dad is self funding so I know nothing about a social worker.
You need to contact SS to get a carers assessment done for your sister and your mum. They are entitled to annual assessments.
Dad has carers in up to 4X a day. Less when I am there.
I use gloves and masks and aprons.
Also sanitizer.
I don’t bring dad to my home as there would be no point. He would not get anything out of it.Plus dad lives in a bungalow.
I can only do some much about Covid. Dad has not been out of his home since March. Only in the garden.
Dad has a few visitors. Mainly family. As long as I have done my best I feel his mental state is just as important.
I hope I may have been some help.
 

Mummymummum

New member
Sep 18, 2020
3
Hi, thanks for the reply.
I have heard of attendance allowance but when I spoke to my sister earlier when she was trying to arrange a social worker visit she said the SW didn't mention anything about any allowances but will mention it to her to jot down and asked. This is why I would prefer us both to be able to attend the home visit but we have been told we cant because of current restrictions.
I think the carers assessment is what she is currently trying to arrange with the SW .
My sisters thoughts are initially carers once a day to get mum up and give her breakfast otherwise she will sleep all day. Sister will do tea most of the days and the odd day she can't I will ask my OH to drop me off to do tea/or check in on her.
How is your dad with you wearing a mask?, I'm worried mum will find them a bit scary. DD is encouraged to use hand sanister at school several times throughout the day so will be ok sanitising hands before visiting mum. Mum always wants to hug DD and struggles to remember there is a "sickness bug" (that's what we have described it has).
The last two times mum was here (February and Christmas) she was fine for the first day but then got very agitated but would like to try so that sister can get a regular few days to herself. Mum's forgotten she's been to our house, she seems to remember we moved but can't remember where to and when she was here last forgot there which room she stops in and that there is a toilet downstairs so the visits may not go well.
Thanks again
 

TNJJ

Registered User
May 7, 2019
1,780
cornwall
Hi, thanks for the reply.
I have heard of attendance allowance but when I spoke to my sister earlier when she was trying to arrange a social worker visit she said the SW didn't mention anything about any allowances but will mention it to her to jot down and asked. This is why I would prefer us both to be able to attend the home visit but we have been told we cant because of current restrictions.
I think the carers assessment is what she is currently trying to arrange with the SW .
My sisters thoughts are initially carers once a day to get mum up and give her breakfast otherwise she will sleep all day. Sister will do tea most of the days and the odd day she can't I will ask my OH to drop me off to do tea/or check in on her.
How is your dad with you wearing a mask?, I'm worried mum will find them a bit scary. DD is encouraged to use hand sanister at school several times throughout the day so will be ok sanitising hands before visiting mum. Mum always wants to hug DD and struggles to remember there is a "sickness bug" (that's what we have described it has).
The last two times mum was here (February and Christmas) she was fine for the first day but then got very agitated but would like to try so that sister can get a regular few days to herself. Mum's forgotten she's been to our house, she seems to remember we moved but can't remember where to and when she was here last forgot there which room she stops in and that there is a toilet downstairs so the visits may not go well.
Thanks again
I only wear a mask for a little while. As I’m with him up to 8hours a day I couldn’t last that long. Plus I also do his personal care so as long as I have gloves and apron I feel that is as much as I can do. I only have him and mum(at her house) so I’m not mixing a lot with other people.
Don’t forget to get the reduction in council tax for your mum... It all helps.
Plus if you need any incontinence items your best bet is to get in contact with the incontinence service. The GP can refer you or you can.. Take care
 

annielou

Registered User
Sep 27, 2019
1,708
Yorkshire
Social Services will probably tell you bit about Attendance Allowance, especially if you ask, ours asked if we'd applied for it and suggested we did, but they don't help with filling in form which is quite complex. A lady from our local carers service (called Making Space in this area) came out to help us fill in the form and I've heard Ageuk also can help in that way. It's better if you have someone who has experience of the form and how to put the answers in the best way. You can download forms before hand as available online and then you can start getting some ideas of answers and info ready then ask them to help fill it in. If Social Workers assessment comes back mum is eligible for carers and they Local Authority will fund it if your mum isn't self funding then they will usually source the carers. The SWs report will say how long a visit and how many your mum is entitled to if they are paying for it.
Trying to get hold of SWs can be hard and they usually like to make appointments for home visits in the morning, I think this is because people with dementia are often more with it then than in an afternoon when sundowning can start and they get tired and more confused and agitated. We used to try for as late an appointment as could so they got to see how confused mum was, latest we got was about lunchtime.
At mums last assessment both me and my sister were going to attend at mums house, we were asked to keep 2 metres away from SW but she didn't say we couldn't both attend, in the end my sisters car broke down on way and she couldn't get there. We have been asked by other services for just one other person than mum to attend to keep number of potential contacts down so different places seem to have different rules so it's likely your SS are asking for 1 other only. for that reason. Could you ask if you could be present on facetime or something so you can still have some input and hear exactly what's said? Good luck with the assessment I hope it goes ok, in my experience its not easy to get some help and action especially if your mum says she doesn't want any which mine did. Tell your sister to be honest about how things really are with your mum and tell them about the bad days more than the good as they'll focus on the good ones more if possible.
I cared for my mum during the lockdown and went every day. I haven't really been other places or mixed with others much at all. As soon as I arrived each day I took off my shoes and put on slippers I kept at mums, and washed my hands, then I wiped down anything I'd touched on the way such as door handles. I didn't wear a mask around mum but she had a carer come 2 afternoons a week and she wore a face mask and put plastic bootees over her shoes. Luckily her wearing face mask didn't bother mum in fact she used to laugh about it with carer. She washed her hands as soon as she arrived and she also wore gloves and an apron to prepare food for mum.
I would take mum to our house for a bit during the day on a weekend and she would wash her hands when arrived as would we, I'm always wiping things down and washing my hands. I wipe my bag, keys and phone and anything I've used outside our house down each time I return. We also have sanitiser and anti bac wipes in the car that we use too. Everything that we buy or comes through the post gets wiped at our house and mums and we wash hands after touching them. I just hoped I was doing all I could to keep risk to mum down while still providing the care she depended on.
My mum was always asking to come to my house but she did used to get confused when she was here and she was always forgetting she'd been before despite me living here over 25 years and mum has been here thousands of times. As the day wore on and mum got tireder, she'd get more confused and unsettled about where she was and when she stayed overnight at Christmas it didn't go well. Your mum might find it confusing being at your house for the weekend so it might be better if you could stay with your mum in her house to give your sister a break but then that might be awkward for your sister if she lives there too and has nowhere else to go and also it could be difficult for your family so bringing her to your home might be only option and hopefully might go ok 🤞
Good luck with it all I hope you and your sister and your mum get some help sorted X
 

Mummymummum

New member
Sep 18, 2020
3
Thanks AnnieLou, I will look at the forms with my sister before the assessment. When they had a brief phone conversation she seemed to agree with my sister re carer in morning to get mum up so if she does think mum is eligible I assume morning carer may be offered. The social worker is now booked in but unfortunately my sister had to book it at a time I can't do, (school run time) because she made it very clear to my sister that she finishes at 4 and it will take about 1hr-1.5 and sister can only get half day of work so being on public transport she wont get home until around 2pm. She is going to ask the SW if notes can be taken and sent to me and if there is any discussion relating to decisions about mum and her health if she can either record that section of the conversation or call me up so I can listen even though I will be walking home.
Agree with what you say regarding staying at mums house but I think sister likes the idea of free time and also in our home it would be easier to try and keep a bit more distance due to it being a bit bigger and mum has her own dedicated room her ( although more stairs than at hers :-( ) and more windows to keep open (although mum would probably be cold and be wrapped up).
Thanks for the good luck.
Thanks Pete 1, will look at zoom for any future meetings.
 

Bunty2410

Registered User
Apr 28, 2020
55
Hi,

My mum was diagnosed with mixed dementia around March last year. She was apparently in early stages back then.
A bit of background, my sister never moved out of the family home so naturally has been mums main carer (didn't need much care until recently) I live two buses journeys away with my primary school aged daughter (work from home part time currently) and my partner. (The only driver between us but he works long hours) .
We think the pandemic has made mum worse. She lives for my daughter and missed her greatly the months we kept away as we thought we were protecting mum.
To not write a massive long post. We've been visiting again but keeping visits to the garden or taking her out in the wheelchair with windows down now DD is back in school. Until the last few weeks we didn't really notice how much mum had deteriorated or how much it was affecting my sister coming home from work and then having to look after mum.
We are now trying to work together better as a team.
My sisters contacted the local mental health team who have put her in contact with a social worker. Do social workers only work short hours, only we are struggling to arrange a home visit around work etc. During the current situation is it normal for them to say we both can't attend the home visit?
Will the social worker sort all mums needs or will we need to arrange anything else ourselves?
We are applying for a blue badge for when we take her out and also POA.
Is there anything else we need to do?
For those who look after parents in their own home or your home how do you currently ensure that the risk of contracting covid is low? We are thinking of having mum once a month for a weekend so sister gets a little break but worry that DD could pass something on (No social distancing in school, bubble size is 25 in class and then because two form entry 50 when playing out)
Thanks and sorry for all the questions and sorry if I've posted in the wrong place.
Hi
My mum has Mixed Dementia but lives on her own 100 miles away. Since Covid we have had a rollercoaster ride and have been on a steep learning curve so hopefully I can be of some help.
We have never seen a social worker only spoken on the phone, we are self funding and as soon as you say that they don’t really want to know.
The Community Dementia Support Team put us in touch with their local hospice whose welfare team sent us the application booklet for Attendance Allowance and Council Tax Waver Application and Blue Badge application.
If your mum is below the income threshold there is probably more available.
The social worker has probably said only 1 of you at visit because of Covid. Make sure you apply for both POAs and if your mum is still able, have those difficult discussions all families avoid so you can be her best advocate in the future.🙂
 

Lynmax

Registered User
Nov 1, 2016
576
I found a lot of help filling in tha AA form online, there were several guides and tips on how to answer all the questions - it's about explaining what support your mum needs, not necessarily the support she actually get currently. For instance my mum really needed someone to prepare all her meals as she could no longer use the cooker and forgot to eat, we could not manage one daily visit but said on the form that she needed three meals a day. It is a ridiculas form, very repetitive and loads of pages long for the amount of money you get!