qubecks thread - alone too

Sue J

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Dec 9, 2009
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Sorry you feel alone qubecks join us on here if you like - no magic wand - but it helps
 

qubecks

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Jun 28, 2012
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nottinghamshire
such great people on here x

x i thank you for your reply x just feeling a bit low to day ? mumhas not been very nice to day ? my daughter has just got engaged x and no responce from my mum at all ? x a party at the weekend to celerbrate x but mum seems not intrested one bit ?
 
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jan.s

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Sep 20, 2011
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Hi Qubecks. I am sorry you feel so sad and alone. We can offer you support, but sadly don't have a magic wand either but you don't need to suffer alone.

Dementia in whatever forms creates a huge amount of loneliness for many reasons. If you want to share, I know there are many of us who will listen and help if we can.

Why not start a new thread, and you'll be amazed how many people will be there for you (I will)

Good luck.

Jan xx
 

jenniferpa

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Jun 27, 2006
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It maybe that the social niceties are just too much for her now. Also, she may not necessarily understand that "engaged" means a good thing. I'm not quite sure what stage your mum is at, but I think, depending on the type of dementia things that other people think are important may simply be irrelevant to a person with dementia, particularly if it something they may not really understand.
 

qubecks

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Jun 28, 2012
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nottinghamshire
qubecks thread

my mum is 86 next , has just started with vasular dementia , plus some alzheimers ? mum has lived with us for 2yrs and a half , i am alone with her 24 four seven really, hubby works away , so only comes back home on fridays / but he is fantastic when he is here x i dont know how to cope with mum and these dreafull moods she has ? she seems to have no emotion ? about anything ? i only want her to say , how nice it is for my daughter to engaged to be married ? but it dosnt seem to be she can say that ? is she my mum i once had ? i dont know anymore ? im just cofused ? sorry to go on , im sure ther is worse off than my self ? i just wish it would all go away ? i am so tried all the time ? my two half sisters are too busy to give me any support ? but i think they should , we do have the same mum , x
 
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Sue J

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Dec 9, 2009
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That sounds really hard qubecks when your on your own most of the time with your Mum. Sorry you don't get support from your sisters either it's no wonder you feel confused and tired. Have you any help from social services?
 

qubecks

Registered User
Jun 28, 2012
38
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nottinghamshire
hi x thanks

It maybe that the social niceties are just too much for her now. Also, she may not necessarily understand that "engaged" means a good thing. I'm not quite sure what stage your mum is at, but I think, depending on the type of dementia things that other people think are important may simply be irrelevant to a person with dementia, particularly if it something they may not really understand.

maybe that is it ? but i am finding it very hard to deal with ? i do not know a lot about dementia ? so i really have to learn and fast ? it is so cruel ? i just want my mumma back ? sometimes i think i can cope ? other times i cant ? i am mixed up ? it will not go away , will it ? x
 

qubecks

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Jun 28, 2012
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nottinghamshire
thank you x

That sounds really hard qubecks when your on your own most of the time with your Mum. Sorry you don't get support from your sisters either it's no wonder you feel confused and tired. Have you any help from social services?

i cant stop saying thank you , to night x so many good people out there x wish my half sisters was has good ? one comes to see mum every tuesday for max of 15 mins ? on her way to luch with a friend ? the other one has been to see mum 3 times in 2 and a half years ? im the baby of the three , i say baby , ha ha im 53 , i have no help from social services , they came once, then closed the case , as they say ? because mum was well looked after ? x oh well ,
 

jan.s

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Sep 20, 2011
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Dear Qubecks,

I am sorry to read about your Mum. It is very hard coping with this situation on your own, I know I did it for my husband. I did get Social Services in when I felt I could no longer cope alone. They sent carers in twice a day during the weekdays and I carried on at weekends.

As far as your mum not sharing the excitement of your daughter's engagement, depending on what stage your mum is at, she probably doesn't understand. My husband has always loved Christmas, but last year, he didn't have a clue what was happening , why we had a big tree in the house, etc.

Sadly here are the effects of dementia; they affect everybody differently, but there are common threads that run through.

Is this still your mum - most definitely yes. She is struggling to make sense of her world, and is not choosing to be unable to understand. This makes her agitated and she will react in an unpleasant way. Again she is not choosing to be like this. I think it must be very frightening to be living in a world that you cannot make sense of.

I real feel you need to involve Social Services for support for you, to give you time for yourself. They will also monitor your Mum's condition, and give support to her too.

I hope this helps.

Jan xx
 

Sue J

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Dec 9, 2009
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i cant stop saying thank you , to night x so many good people out there x wish my half sisters was has good ? one comes to see mum every tuesday for max of 15 mins ? on her way to luch with a friend ? the other one has been to see mum 3 times in 2 and a half years ? im the baby of the three , i say baby , ha ha im 53 , i have no help from social services , they came once, then closed the case , as they say ? because mum was well looked after ? x oh well ,

Perhaps it's time you contacted SS for a carer's assessment for you. They obviously don't understand how bad the situation is with your Mum and they need to reopen the case but they might not realise that until you say you can't do it anymore and you have a right to have your needs assessed. I do feel for you, try and get some help I know it's very difficult when you feel so overwhelmed yourself. I would even get ready for when your sister comes, have your coat on and as she comes in say you're going to the Drs and don't know what time you'll be back. Probably not a good idea but it makes me cross when other family members leave it all to one person.
 

jan.s

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Sep 20, 2011
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i have no help from social services , they came once, then closed the case , as they say ? because mum was well looked after ? x oh well ,

As Kassy has said, it is no good letting Social Services think you're coping! A few tears work well, just to show you're not coping; there is no shame in admitting that, most of us on here have at some time! When they come round they need to see the true picture - not a polite lady sitting beautifully dressed in a pristine room!

Caring can be a very lonely place, which is where TP comes in. On here you can say whatever you're feeling, and people are not judging you, but can sympathise, as most of us have been there and worn the T-Shirt!!

Keep posting.
Love
Jan x
 

qubecks

Registered User
Jun 28, 2012
38
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nottinghamshire
x

Dear Qubecks,

I am sorry to read about your Mum. It is very hard coping with this situation on your own, I know I did it for my husband. I did get Social Services in when I felt I could no longer cope alone. They sent carers in twice a day during the weekdays and I carried on at weekends.

As far as your mum not sharing the excitement of your daughter's engagement, depending on what stage your mum is at, she probably doesn't understand. My husband has always loved Christmas, but last year, he didn't have a clue what was happening , why we had a big tree in the house, etc.

Sadly here are the effects of dementia; they affect everybody differently, but there are common threads that run through.

Is this still your mum - most definitely yes. She is struggling to make sense of her world, and is not choosing to be unable to understand. This makes her agitated and she will react in an unpleasant way. Again she is not choosing to be like this. I think it must be very frightening to be living in a world that you cannot make sense of.

I real feel you need to involve Social Services for support for you, to give you time for yourself. They will also monitor your Mum's condition, and give support to her too.

I hope this helps.

Jan xx

thank you jan x i wish you and your husband well x i think i do not know enough about this cruel illness ? itis just like a bad dream ? i just want my mum back ? maybe i will get used to this ? every morning i get my mum up , i wounder who she will be ? sorry to bother you with this , but i dont have anyone to talk too ? my sisters are not intrested ? which makes me feel loads worse ? x
 

jan.s

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Sep 20, 2011
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thank you jan x i wish you and your husband well x i think i do not know enough about this cruel illness ? itis just like a bad dream ? i just want my mum back ? maybe i will get used to this ? every morning i get my mum up , i wounder who she will be ? sorry to bother you with this , but i dont have anyone to talk too ? my sisters are not intrested ? which makes me feel loads worse ? x

I agree it's like a bad dream, and yes it's a very cruel illness. I cannot change that, but only wish I could to have my lovely husband back. I have to accept how he is and pick out the good bits. Always remember that underneath everything, she is still your mum, and nothing changes that. She may have difficult behaviours, but I have found that comforting and reassuring my husband has worked wonders. When she speaks to you in an unpleasant way, try not to take it personally - it's the illness talking, not her.

Jan x
 

qubecks

Registered User
Jun 28, 2012
38
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nottinghamshire
x

Perhaps it's time you contacted SS for a carer's assessment for you. They obviously don't understand how bad the situation is with your Mum and they need to reopen the case but they might not realise that until you say you can't do it anymore and you have a right to have your needs assessed. I do feel for you, try and get some help I know it's very difficult when you feel so overwhelmed yourself. I would even get ready for when your sister comes, have your coat on and as she comes in say you're going to the Drs and don't know what time you'll be back. Probably not a good idea but it makes me cross when other family members leave it all to one person.

my eldest sister is very scarry x makes every excuse in the book , says her husband is very ill ? yet she stays out five hours , sopping and having lunch with a friend , she says its her day off from caring for her husband , she told me that she has been ill for 2 wks ? this was on a sat eve, said she was too ill to go anywhere ? so on the sunday morning i said to my husband , ( take a orchid and a card to my sisters _) its their annerversarry , so off he went , when he arived at their home , no one was in ? ( yet she said the night before she was to ill to go anywere ) so he was driving away from their house , and comming down the road towards him , was my sister and her husband ? both too ill to go out ? hubby said , you should have seen her face , she didnt know where to put herself ? this isnt the first time she has lied ? yet they are both too ill to spend time with mum ? im going on again ? sorry x
 

Sue J

Registered User
Dec 9, 2009
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my eldest sister is very scarry x makes every excuse in the book , says her husband is very ill ? yet she stays out five hours , sopping and having lunch with a friend , she says its her day off from caring for her husband , she told me that she has been ill for 2 wks ? this was on a sat eve, said she was too ill to go anywhere ? so on the sunday morning i said to my husband , ( take a orchid and a card to my sisters _) its their annerversarry , so off he went , when he arived at their home , no one was in ? ( yet she said the night before she was to ill to go anywere ) so he was driving away from their house , and comming down the road towards him , was my sister and her husband ? both too ill to go out ? hubby said , you should have seen her face , she didnt know where to put herself ? this isnt the first time she has lied ? yet they are both too ill to spend time with mum ? im going on again ? sorry x

Qubecks don't apologise, you're not going on you're being very human. It must be so hurtful that your sister is treating you, your husband and your Mum in this way. Your'e suffering doubly because of it, not being able to share your feelings about how your Mum is to your sister's is very painful. 24/7 gets too much for most people though and without regular support your own health is suffering. Please get to see your GP and ask him/her if they can make a referral for support for you and your Mum.
 

Helen33

Registered User
Jul 20, 2008
14,697
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Hello Qubecks,

sorry to bother you with this , but i dont have anyone to talk too
This is one of the reasons why Talking Point exists. It is a wonderful source of support and information. I am so glad that you have found us and hope that you will soon be feeling the benefit of the multiple ways in which TP can provide support.

My suggestion to you is that you contact the Nottingham Branch of the Alzheimers society. Their outreach workers are wonderful. I think it would be a good idea to tell them what you have told us and you might be surprised as what help you might receive and the support in which to help you get it. You should not be caring 24/7 with no information or support at all. You should be in the system somewhere together with your mum and you should both be monitored and properly assessed. You were assessed once and it was seen that your mum was receiving all the help that she needed from you. OK well that won't continue unless you are given some help in which to continue that wonderful support;) There is Crossroads Care in the Nottingham area which provides a wonderful sitting service and it would be nice to think that you could access this support to enable you to get out for little breaks during the week. It is a progressive illness and so you will need progressive support to keep you fit and well. It seems a waste of energy hoping and longing for your sisters to help because they clearly do not want to for their own reasons. This is not at all uncommon. It might be better to use that same energy in getting in experienced people that can offer you support properly and where you will not have to be 'obliged' to them.

Here is the Nottm/Notts information regarding the Alzheimers Society: http://alzheimers.org.uk/site/custom_scripts/branch.php?branch=true&branchCode=13798

Love
 

jan.s

Registered User
Sep 20, 2011
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Hi Qubecks
Hope you're feeling a little more supported this morning - You're never alone with TP!! :)

Thinking of you.
Jan x
 

ceris

Registered User
Jun 7, 2012
67
0
Bedfordshire
Hi qubecks.

Would like to say that I understand totally where you're coming from on the feeling alone front. My situation is very different from yours (which sounds horribly stressful, I must say) but I too am at the end of my tether, and don't feel as though I can go on any more.

The only thing I can say is that although I've only recently joined TP (you seem to be more of a veteran than me!) it's been very helpful so far. People have sent me messages of support, so I'd just like to add mine to you.

Very best x