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Welcome to Talking Point - introduce yourself here

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Shedrech

Volunteer Moderator
Dec 15, 2012
8,733
Yorkshire
hello @SimoneLesleyOlivia42
a warm welcome to TP
it's odd isn't it how discovering that a situation we face is not unique helps so much - there are plenty of folk here who will recognise your description
so I'm glad you've now joined this wonderfully supportive forum
settle in, have a good mooch around and start your own thread whenever you are ready
 

Mudgee Joy

Registered User
Dec 26, 2017
665
New South Wales Australia
I am a bit confused about the dates on top of postings - some say “today” and then next date is December !?! Atevthe dates correct - not january?
Love TP though - very helpful not to be isolated
 

Mudgee Joy

Registered User
Dec 26, 2017
665
New South Wales Australia
Perhaps it’s a problem at my end !?eg I just looked up “can I have time off to be ill ” - says today - click on and it says August 4 !?
Maybe I should shut down my iPhone totally and reopen -
I don’t have D - yet ‍♂
 

Izzy

Volunteer Moderator
Aug 31, 2003
60,996
68
Dundee
Perhaps it’s a problem at my end !?eg I just looked up “can I have time off to be ill ” - says today - click on and it says August 4 !?
Maybe I should shut down my iPhone totally and reopen -
I don’t have D - yet ‍♂
The first post in that thread is August 3rd. If you click on the title of the thread you go to the first post. If you click on the last page the last post was yesterday at 10.20pm.
 

Desperate daughter

New member
Jan 7, 2018
3
Hi my mum has dementia, she 85 and has been being looked after by her 92 year old sister, they wouldn’t accept any help until her sister had a fall and ended up in hospital for 3 weeks, we have managed to get them both into a care home but both are unhappy, Mum is confused and doesn’t sleep, she is stressed and verbally aggressive, my auntie who doesn’t have dementia is depressed and annoyed at her loss of independence, shes not well and my mum is driving her mad, I think I’ve made a mistake as the staff don’t interact with the residence that much. With two people to please I just don’t know what to do, as they want to be together but it doesn’t seem to be working. I looked after Mum for the last month and am exhausted.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
8,733
Yorkshire
hello @Desperate daughter
you seem to be being torn in two
welcome to TP, a good place to come for sense and sympathy
I appreciate that you want to help both your mum and your aunt - but to be honest, it doesn't sound as though you are going to be able to do more than you have - clearly they both needed to move into a care home as your mum isn't able to care for herself due to the dementia, and your aunt isn't now physically able to cope - it is a stressful time for all concerned
I feel sad for your aunt, but she is able to think through her situation and realise that there was little choice
your poor mum will probably take some time to settle - I wonder whether it's worth asking for her meds to be reviewed to help her
keep an eye on the relationships with staff, chat with them about your mum; it may be that they are just getting to know her and giving her some space
and do keep posting - start your own thread, when you're ready, with anything that's on your mind
 

Lmh1977

Registered User
Jan 7, 2018
39
Hi I'm new to the group and just wanted to say my heart goes out to everyone caring for a loved one with this awful illness. My beautiful grandad was diagnosed with vascular dementia nearly a year ago but has been in a nursing home for the last 3 months. It is hearybreaking to watch him suffer. I am there as much as I can as well as looking after nana who is still in her own home. The nursing home ring me when he is not well or has had fall and I get there to calm him. He is now falling often and we have had 2 hospital stays in as many weeks. When the phone rings it is very upsetting. He is very frail and is not eating much now. It takes alot to move him as he doesn't weight bare very well now. He has to watched all of the time. It has become the first thing I think of when I wake and keeps me up late t night in case the phone rings. Thoughts and prayers with you all
 

Desperate daughter

New member
Jan 7, 2018
3
hello @Desperate daughter
you seem to be being torn in two
welcome to TP, a good place to come for sense and sympathy
I appreciate that you want to help both your mum and your aunt - but to be honest, it doesn't sound as though you are going to be able to do more than you have - clearly they both needed to move into a care home as your mum isn't able to care for herself due to the dementia, and your aunt isn't now physically able to cope - it is a stressful time for all concerned
I feel sad for your aunt, but she is able to think through her situation and realise that there was little choice
your poor mum will probably take some time to settle - I wonder whether it's worth asking for her meds to be reviewed to help her
keep an eye on the relationships with staff, chat with them about your mum; it may be that they are just getting to know her and giving her some space
and do keep posting - start your own thread, when you're ready, with anything that's on your mind
 

Desperate daughter

New member
Jan 7, 2018
3
Thank you for your reply, it’s very supportive and helpful. My big worry apart from the obvious rr mums condition, is that the staff don’t interact as much as I would like, they seem to be minders rather than providing stimulation, and what I mean by that is just general chatting and smiling, comfort. I’m worried I’ve chosen the wrong care home, which was a strategic nightmare as there are two people involved with different needs. If my house was bigger I’d care for them both myself. But again thank you x
 

leslyz

Registered User
Oct 24, 2015
278
Hi, I registered a while ago but haven't really used the forum, not being very techy. I'm needing to find some support to cope (for her and for me) but its tricky as I'm in one town and mum lives 100 miles away. She was diagnosed about 2-3 years ago and has stayed fairly independent. I'm hoping reading about others experiences and sharing my own will help though as at the moment I'm finding things quite difficult. Age UK go in a couple of times a week. I see her at least monthly and speak regularly. She is still fiercely independent but her decline is getting more obvious. Its the emotional drain of trying to do your best and yet knowing that all the help I'm trying to get in place isn't being appreciated, she has no idea, how can she? Does anyone know of support for distant carers who are involved but not actually living with their loved one. THanks. Lesleyz
 

Shedrech

Volunteer Moderator
Dec 15, 2012
8,733
Yorkshire
hello @leslyz
welcome to posting :)
there are quite a number of distance carers on TP so they may have suggestions - I guess you are mooching around the threads and so may well come across useful info - from what I can gather, TP itself is pretty much the main way of getting support - so start a thread ith any particular issue and folk will respond
have you contacted Admiral Nurses
https://www.dementiauk.org/get-support/admiral-nursing/
and do ask for an assessment of your mum's care needs from her Local Authority Adult Services as she has a right to this and it flags her up on their systems
I think many carers will recognise how wearing it is emotionally to do so much and have no acknowledgement - sadly, as you say, the losing of empathy is part of the effects of dementia - but we're human and it hurts that our parent is no longer the giving person they were
keep posting; it helps to share experiences
 

leslyz

Registered User
Oct 24, 2015
278
My husband was diagnosed with early Alzheimers in February 2017. I had noticed that he wasn't quite his normal self for about 2 years but over this last year he seems to have got noticeably worse. What I find difficult is that I still see him as he used to be and find it difficult to deal with situations when he doesn't understand what I am talking to him about. I know that I must be more patient with him but I am feeling very stressed with everything that happens. Do you think this is a normal reaction from me as if I have got annoyed with him I always feel bad afterwards ?
Hi daisywoo,
I really relate to what you say about your husband and feeling stressed. I am not in quite the same situation as its my mum and I only see her monthly but speak to her regularly on the phone but sometimes it is so hard to be tolerant. Like you, I see her as the person she always was and its difficult to accept that they can't take in or remember what you've said and to cope with the personality changes too. It is hard to always be patient, we are only human but this is a very cruel illness and its horrible to watch your loved one decline, it must be so hard for you seeing your husband like this. I've only just started posting on here having signed up a couple of years ago but the impact on the carer just cannot be underestimated. Thank god there's places like this for us to share and offload.
Best wishes, Lesleyz
 

leslyz

Registered User
Oct 24, 2015
278
hello @leslyz
welcome to posting :)
there are quite a number of distance carers on TP so they may have suggestions - I guess you are mooching around the threads and so may well come across useful info - from what I can gather, TP itself is pretty much the main way of getting support - so start a thread ith any particular issue and folk will respond
have you contacted Admiral Nurses
and do ask for an assessment of your mum's care needs from her Local Authority Adult Services as she has a right to this and it flags her up on their systems
I think many carers will recognise how wearing it is emotionally to do so much and have no acknowledgement - sadly, as you say, the losing of empathy is part of the effects of dementia - but we're human and it hurts that our parent is no longer the giving person they were
keep posting; it helps to share experiences

thank you for this, it helps to know people are around. I did wonder about Admiral nurses and in fact googled them earlier but don't think we would be eligible being in different towns though as they seem to work with both the PWD and the carer together. Mum's had a local authority assessment, she's getting what she's entitled to and in fact has quite a decent income. I got her on Attendance Allowance as well and even with that she's begrudging the costs and feeling she's been railroaded into accepting the help. Thankfully the POA is all set up and that is coming into its own.
thanks again, Lesley
Hello everyone.
The time has come for me to have somewhere to come and say how I feel to people who understand. My dear husband is 77 and was diagnosed with Alzheimer’s in 2015 .I’ve been somewhat burying my head in the sand but it’s getting hard to ignore things now.I was reluctant to read other people’s experiences as I knew a lot of them would upset me more.Some would tell of things that will happen that I don’t want to know about. I hope this makes sense! I am a private sort of person and sadly only have acquaintances rather than friends so I have no-one to really talk to. Though our children are understanding they don’t live close and I don’t want to keep on about things when we speak on the phone.
I hope I can make friends here and vent how I feel without judgement.Thanks.
 

FrazzleCat

New member
Jan 2, 2018
8
hi @FrazzleCat
glad to be of help
have you contacted your mum's Local Authority Adult Services for an assessment of her care needs? - this is not reliant on a diagnosis - from the brief info you give it sounds as though if you weren't with her, she would not be able to cope on her own so would be a vulnerable adult at risk of harm and as the LA have the duty of care they are responsible for her welfare and safety - she has a right to an assessment and a care package may then be put in place to support her, and you - it should not be all down to you
in fact if you are her main carer, you have a right to a carer's assessment too
you might also want to look into Attendance Allowance - it is not means tested and is awarded for need, not necessarily that care is being provided by others - the forms are available online
you are absolutely not pathetic and no-one here would dream of telling you to get off your backside: we're far too aware of what it is to be in your position - you need help, so contact Adult Services - and for sympathy and support, keep posting here
Thank you for you advice mum does get attendance allowance but nit the full yet but I am on that
hi @FrazzleCat
glad to be of help
have you contacted your mum's Local Authority Adult Services for an assessment of her care needs? - this is not reliant on a diagnosis - from the brief info you give it sounds as though if you weren't with her, she would not be able to cope on her own so would be a vulnerable adult at risk of harm and as the LA have the duty of care they are responsible for her welfare and safety - she has a right to an assessment and a care package may then be put in place to support her, and you - it should not be all down to you
in fact if you are her main carer, you have a right to a carer's assessment too
you might also want to look into Attendance Allowance - it is not means tested and is awarded for need, not necessarily that care is being provided by others - the forms are available online
you are absolutely not pathetic and no-one here would dream of telling you to get off your backside: we're far too aware of what it is to be in your position - you need help, so contact Adult Services - and for sympathy and support, keep posting here
 

FrazzleCat

New member
Jan 2, 2018
8
Thank you for you advice mum does get attendance allowance but nit the full yet but I am on that
Sorry I seem to have hit a button before I should. Was going to say had a really bad experience in the early hours of Sunday morning just gone. I couldn’t get mum off the toilet after a lot of trying and distress to her. So I made the decision to call 999 and to their credit they arrived in about 6 minutes what a fabulous service. The paramedic was great got her off the loo and without too much description we got her cleaned up. BP temp and ecg all ok. I got the feeling the paramedic was annoyed that I had called them and should have gone through 111. I know they are over..... everything but what use is someone on the other end of a phone when I needed physical help. So I spoke to my doctor yesterday and she said yes absolutely call the paramedics they are the only ones who can cope with an emergency. It’s made me a little bit unsure of who I should call. I really did think there was something wrong with mum she had a little bit of vomiting and the diarrhoea was nasty. It was 2:30 in the morning. Also in the notes left by the paramedic she says mum was uncooperative I would say mum just couldn’t get up. I am so supportive of our emergency services I even give to a couple of charities but even though they came and sorted it out i jus t feel a little bit let down. Just another vent feel better.
 

Amethyst59

Registered User
Jul 3, 2017
5,749
Kent
Sorry I seem to have hit a button before I should. Was going to say had a really bad experience in the early hours of Sunday morning just gone. I couldn’t get mum off the toilet after a lot of trying and distress to her. So I made the decision to call 999 and to their credit they arrived in about 6 minutes what a fabulous service. The paramedic was great got her off the loo and without too much description we got her cleaned up. BP temp and ecg all ok. I got the feeling the paramedic was annoyed that I had called them and should have gone through 111. I know they are over..... everything but what use is someone on the other end of a phone when I needed physical help. So I spoke to my doctor yesterday and she said yes absolutely call the paramedics they are the only ones who can cope with an emergency. It’s made me a little bit unsure of who I should call. I really did think there was something wrong with mum she had a little bit of vomiting and the diarrhoea was nasty. It was 2:30 in the morning. Also in the notes left by the paramedic she says mum was uncooperative I would say mum just couldn’t get up. I am so supportive of our emergency services I even give to a couple of charities but even though they came and sorted it out i jus t feel a little bit let down. Just another vent feel better.
Hello, excuse me for butting in...I just read this post and the thought that occurred to me is that you must have been very frightened and stressed...and I know when I am like that, I get a bit paranoid. Maybe the paramedic wasn’t annoyed...and the Dr has told you to call the paramedics...so you are doing what you were told. And maybe the notes said Mum was ‘uncooperative’ because it is a medical term? That she wasn’t trying to get up...and that’s how they phrase it? As I say, just a thought. I am glad you have found TP...
,
 

whatproblem

Registered User
Jan 9, 2018
29
Good evening all. Having just joined this forum, I'm relieved to hear that there are others in the same boat as me and coming up against the same problems. My Mum is in mostly in denial (hence my username) although at the worst times she does admit to being fearful. I think she's beyond the home help stage and needs to go into a care home for her own safety, but it will involve a huge change in her lifestyle. She currently thinks of herself as the lady of the house (she lives alone in a family-sized house), despite being barely able to wash, dress and feed herself. Half the battle will be finding a suitable home that she can afford, and the other half will be persuading her (with deception if necessary) to move into it.

Happy to answer questions or share experiences and condolences!

P.S. Sorry if I've broken the rules by cross-posting. I initially posted on someone else's thread by mistake and then tried to delete that post.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
8,733
Yorkshire
hello @whatproblem
welcome to TP - and no problem about the posting
settle in with a cuppa and have a good read round as there's lots os information and useful suggestions here
it helps so much to share experiences and be able to ask any question you have
it is tricky moving from coming to the realisation that full time care is now needed to getting everything in place but members will help
so when you're ready, start hpur own thread and chat away, maybe on the 'I czre for someone' forum
 
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