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Welcome to Talking Point - introduce yourself here

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Globemaker

New member
Jul 20, 2018
4
Hello my mum is 87and she was diagnosed with dementia 5yrs ago after a fall
I have been looking after her for the last 3yrs full time ..its not difficult we get on well
I have to be here at night because she wanders and talks to herself
The councillor I spoke to about her not answering the door for an important gas safety check..told me I'm not allowed to be here at night at all , so I asked about an exchange to 2bed place and was told to look myself ..and have been refused because I'm not a tenant ..so I've been told again I can't stay here ...how can I look after my mum any ideas would be welcome
Confused
 

nae sporran

Volunteer Host
Oct 29, 2014
7,062
Bristol
Where are you staying @Globemaker ? Sorry, almost forgot to say hello and welcome. I stay with my partner at extra care housing and have no tenancy, but nobody objects to me staying.
 

nae sporran

Volunteer Host
Oct 29, 2014
7,062
Bristol
Welcome to TP @Patience59. You will find many people here to share experiences with who understand. I'm sorry your father is getting worse recently, has he been tested for an infection Or is it more long term?
 

Globemaker

New member
Jul 20, 2018
4
@nae sporran Hello, I was just just chatting in The Hub a meeting house for the tenants ,when she told me I can't stay ,it was a bit weird because she had just been telling me her mother who has Alzheimer's
I'm bit worried now
 

karaokePete

Registered User
Jul 23, 2017
5,635
N Ireland
@nae sporran Hello, I was just just chatting in The Hub a meeting house for the tenants ,when she told me I can't stay ,it was a bit weird because she had just been telling me her mother who has Alzheimer's
I'm bit worried now
Hello and welcome from me too.

It might be an idea to contact Social Services and ask for the needs assessments to which you are both entitled. Getting them on your case may help your cause.
It may also be a good idea to check for support services in your area and you can do a post code check by following this link https://www.alzheimers.org.uk/find-support-near-you
 

karaokePete

Registered User
Jul 23, 2017
5,635
N Ireland
Hello, I look after my father who is 91, he lives with us and recently we have noticed a definite decline in his memory, plus more confused and bizarre behaviour. I just wanted to share our experiences and to hear from others having similar experiences themselves
Hello and welcome to TP from me too.

You don’t mention if your father has been diagnosed with dementia. If that hasn’t been done a visit to the GP would be a great idea as other, curable, conditions can cause dementia like symptoms. If you were to find it was dementia then the diagnosis can be the gateway to support. Even if a diagnosis has been made it has to be remembered that infections etc., can cause a downturn that may be reversible with treatment.
 

nae sporran

Volunteer Host
Oct 29, 2014
7,062
Bristol
@nae sporran Hello, I was just just chatting in The Hub a meeting house for the tenants ,when she told me I can't stay ,it was a bit weird because she had just been telling me her mother who has Alzheimer's
I'm bit worried now
That seems a bit weird right enough, but I would definitely contact Social Services for a care needs assessment and a carers assessment as Pete suggests. As you are your mum's carer and she needs care they can help you sort out what help you are entitled to including housing.
 

garfield3

Registered User
Jun 30, 2018
200
It’s not easy “looking in an doing it from afar”. Ok it’s not the physical hard work that others have, but the guilt that “I should be there”
I used to live in USA, returned as both parents beginning to become frail, mentally and physically, It took a long time to stop being resentful.
Keep in close touch with those family members that do supervise the care, make sure they know how much you appreciate it. Avoid telling them of holidays you have taken, especially if they can’t.

Thanks for that. It is good to know that there are others about. It is the constant worry,even though ,I know she is safe, clean and being fed. I really want to come back to the UK. However, it is not simple to do. I can't see it happening, especially with the economy at the moment etc.

One thing that drives me crazy, is when I speak to the nurses once a week, they generally say she is fine. Fine is what??? Not helpful at all!, Grrr. I do ask questions . What I do realise is that it is a common. Problem with health officials.

Thanks for listening to my rant.
 
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DeMartin

Registered User
Jul 4, 2017
711
Kent
Thanks for that. It is good to know that there are others about. It is the constant worry,even though ,I know she is safe, clean and being fed. I really want to come back to the UK. However, it is not simple to do. I can't see it happening, especially with the economy at the moment etc.

One thing that drives me crazy, is when I speak to the nurses they generally say she is fine. Fine is what??? Not helpful at all!, Grrr. I do ask questions . What I do realise is that it is a common. Problem with health officials.

Thanks for listening to my rant.
Part of it is confidentiality, and part is no one wants to say upsetting information over the phone. You just need to ask leading questions, but really do you want to know the full detail?
 

garfield3

Registered User
Jun 30, 2018
200
Part of it is confidentiality, and part is no one wants to say upsetting information over the phone. You just need to ask leading questions, but really do you want to know the full detail?
For me,I do want to know the full detail, I don't like surprises. Dad however, is happy, generally in the dark. Possibly, his way of coping. Thanks.
 

Helens2904

New member
Nov 12, 2017
2
Colchester, Essex
Hello, I'm Helen, 31 years old and helping to care for my 62 year old mother, who in October 2017 was officially diagnosed with FTD. She lives on her own however has support from her partner, myself and my brother. Looking back I started noticing the signs about 3 years ago, whoever since her diagnosis in October she has gone very quickly down hill. She now has carers twice a day (however I feel this isn't enough), she has become incontinent, has starting to wander and is going through a phase of sleeping in the day and not at night. I feel our next step will be full time care either at home or in a care home. Any advice would be welcomed. Helen x
 

karaokePete

Registered User
Jul 23, 2017
5,635
N Ireland
Hello, I'm Helen, 31 years old and helping to care for my 62 year old mother, who in October 2017 was officially diagnosed with FTD. She lives on her own however has support from her partner, myself and my brother. Looking back I started noticing the signs about 3 years ago, whoever since her diagnosis in October she has gone very quickly down hill. She now has carers twice a day (however I feel this isn't enough), she has become incontinent, has starting to wander and is going through a phase of sleeping in the day and not at night. I feel our next step will be full time care either at home or in a care home. Any advice would be welcomed. Helen x
Hello and welcome, I hope you find the forum friendly and supportive.

It may be worth asking your Social Worker for a another needs assessment due to the new developments.
 

CaliforniaSis

New member
Jul 25, 2018
4
Hi, I just joined today. I found this forum after I did a search for Downs Syndrome and dementia. I am one of originally 8 children, and our youngest sibling (just turned 47 earlier this year) has dementia and an onset of seizures about a year ago (currently controlled well with medication). It is just so hard to find any good practical information about dementia in Downs Syndrome. Doctors and care givers are unfamiliar as well. My sister is non-verbal, so she can only communicate through shaking her head "no" or crying when she is upset, or banging her hand against the chair arm when she is frustrated about something (although we can't really know what is frustrating her at any point in time). She had a couple seizures recently, and that has caused a change in her behavior. She has rapid mood swings, that can go from almost manic to sobbing and crying. Her sleep pattern is disturbed, although she did sleep okay last night. Myself and another sister care for her at home. My older sister is the primary care giver because she is retired and I can't afford to retire yet. My older sister is just about worn out from all the demands and I'm afraid she will have a nervous breakdown at some point.

I guess I'm just looking for a place where I could communicate with others in a similar situation and hopefully share ideas and suggestions on how to continue to care for our sister at home. We often feel very alone in this struggle, as professionals one would hope would be able to provide help and information seem as much at a loss as we are. I know things will only get worse as time goes on, but we're trying to figure out what we should plan for, and I guess we are also wondering how we might know when it would be time to ask for hospice care.

Thank you in advance.
 

canary

Registered User
Feb 25, 2014
13,434
South coast
Hi @CaliforniaSis and welcome to Talking Point

I think you might be better off starting your own thread as more people will see it, rather than it getting hidden away on here. this might be the best place https://forum.alzheimers.org.uk/forums/i-care-for-a-person-with-dementia.70/

Although your sister has Downs, I suspect that the problems will, nevertheless, be quite similar to the problems that we face with or non- Downs relatives with dementia, so have a look around and see what general advice there is. If you want to ask about anything specific do start a new thread about it.
:)
 

Chesterton

New member
Jul 24, 2018
3
Hello, I look after my father who is 91, he lives with us and recently we have noticed a definite decline in his memory, plus more confused and bizarre behaviour. I just wanted to share our experiences and to hear from others having similar experiences themselves
 

Chesterton

New member
Jul 24, 2018
3
Hello. This is my first attempt to join in. Like you I’m wanting to share my experience and sorry if I’m not able to offer any advice right now. My sister and I have been looking after our 97 year old Mum in her own home until 3 weeks ago, taking it in turns to live back in our childhood home which has been a very emotional experience in itself. Mum’s VD was actually confirmed 3 months ago. She couldn’t be left alone as she panicked so it’s been 24/7 care. We tried our best to make her feel safe and happy but her periods of anxiety and distress continued no matter what we did. Medication hasn’t really helped and we were advised by our social worker to take up the offer of an assessment bed in a Respite home for 3 weeks. Reluctantly we did and the assessment recommendation has been confirmed that she needs full time residential care. Today we have to move her into a care home, after an exhausting search. We feel beyond sad because for some of the time she is still recognisably our alert, switched-on Mum struggling to make sense of what’s happening to her. She values her independence and ‘going into a home’ has been her biggest dread so we’re full of guilt and worry.
What do we say to her today when looks at us so hopefully and asks if she’s going home? She used to ask us this when she actually was at home but couldn’t recognise that she was. When she asks us for ‘the truth’ can she handle it?
Sorry if I’m not offering anything useful to you right now but just needed to explain what we’re facing ourselves today. Woke up at 5am worrying about it.
 

Cat27

Volunteer Moderator
Feb 27, 2015
11,606
Merseyside
Hello. This is my first attempt to join in. Like you I’m wanting to share my experience and sorry if I’m not able to offer any advice right now. My sister and I have been looking after our 97 year old Mum in her own home until 3 weeks ago, taking it in turns to live back in our childhood home which has been a very emotional experience in itself. Mum’s VD was actually confirmed 3 months ago. She couldn’t be left alone as she panicked so it’s been 24/7 care. We tried our best to make her feel safe and happy but her periods of anxiety and distress continued no matter what we did. Medication hasn’t really helped and we were advised by our social worker to take up the offer of an assessment bed in a Respite home for 3 weeks. Reluctantly we did and the assessment recommendation has been confirmed that she needs full time residential care. Today we have to move her into a care home, after an exhausting search. We feel beyond sad because for some of the time she is still recognisably our alert, switched-on Mum struggling to make sense of what’s happening to her. She values her independence and ‘going into a home’ has been her biggest dread so we’re full of guilt and worry.
What do we say to her today when looks at us so hopefully and asks if she’s going home? She used to ask us this when she actually was at home but couldn’t recognise that she was. When she asks us for ‘the truth’ can she handle it?
Sorry if I’m not offering anything useful to you right now but just needed to explain what we’re facing ourselves today. Woke up at 5am worrying about it.
Welcome to TP @Chesterton

Personally I would say you can go home when you’re better or when the Dr says you can.

You may find this interesting. https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/
 

Jezzer

Registered User
Jun 12, 2016
984
Lincoln, UK
Hello. This is my first attempt to join in. Like you I’m wanting to share my experience and sorry if I’m not able to offer any advice right now. My sister and I have been looking after our 97 year old Mum in her own home until 3 weeks ago, taking it in turns to live back in our childhood home which has been a very emotional experience in itself. Mum’s VD was actually confirmed 3 months ago. She couldn’t be left alone as she panicked so it’s been 24/7 care. We tried our best to make her feel safe and happy but her periods of anxiety and distress continued no matter what we did. Medication hasn’t really helped and we were advised by our social worker to take up the offer of an assessment bed in a Respite home for 3 weeks. Reluctantly we did and the assessment recommendation has been confirmed that she needs full time residential care. Today we have to move her into a care home, after an exhausting search. We feel beyond sad because for some of the time she is still recognisably our alert, switched-on Mum struggling to make sense of what’s happening to her. She values her independence and ‘going into a home’ has been her biggest dread so we’re full of guilt and worry.
What do we say to her today when looks at us so hopefully and asks if she’s going home? She used to ask us this when she actually was at home but couldn’t recognise that she was. When she asks us for ‘the truth’ can she handle it?
Sorry if I’m not offering anything useful to you right now but just needed to explain what we’re facing ourselves today. Woke up at 5am worrying about it.
Good morning and welcome. I wish it were under better circumstances for you. This is so tough for you and your sister but the main thing to keep in mind is that you are doing the right thing for your dear mum. You clearly love her dearly and have done remarkably well in your loving care. However the time has come where residential care becomes necessary as it did for my precious mum. I do appreciate your wish to be truthful with your mum but might I suggest, if she becomes distressed, that you tell her she is having a period of respite? I know this isn't strictly true but it could help settle her fears. To my amazement my mum settled into her NH immediately! She DID actually go in for respite but when it was agreed she needed permanent care, she became upset in the meeting because she thought she was being moved and didn't want to leave!! Since then she has happily considered the NH as "home". I appreciate how distressed you feel but if you can, try and remain calm and positive with mum today and continue to reassure her. Forgive me if I'm advising. what you already know. My thoughts are with you all. Please keep us up to date. TP is a wonderful forum and you will receive nothing but kindness, compassion, understanding and, if needed, good advice and support. I wish you well today. With love and understanding. J
 
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