Feeling stupid and useless

Allypally67

Registered User
Feb 20, 2016
21
0
West Sussex
I haven't been on here for a while but today I am feeling really low and just feel I need to talk.
After a long wait mum and I finally got a visit from a social worker to assess mum and her needs!
Mum was diagnosed with AD in Feb this year but I believe she has had it for a couple of years. I am well aware it is early days and many on here have much worse to cope with but it just astounded me that mum is considered "independent" because she can get her own food and go to the loo herself and I live with her!
So, we are not entitled to any help!
The fact is, if mum says she is happy to be alone sometimes and she feels she can cope and look after herself then all is well apparently!
My doctor told me I was run down and in need of a break but I have no hope.
I had hoped to get some time alone in my own home but the only way I can get some me time is to go out and leave mum alone at home which I feel really guilty doing.
Guess I am just being pathetic but I am finding the constant repetition of questions about things mum has known for years or already been told, doing the majority of the daily chores, reminding mum to take tablets, tidying up things that need to go in the fridge/freezer etc., hunting for things that have been put in a safe place, going to work and the constant worry about the future so very frustrating and difficult!
It just feels like no-one is listening to me or that I just don't matter.
I know that sounds really selfish but mum seems to think everything is fine.
She doesn't realise that when she says she is having "a bad day" that she actually says that EVERYDAY! and that I get bad days sometimes and just want to cry/sleep all day without having to worry about her or what she is doing.
Sorry! If anyone has read all this then thank you!
I just really needed to rant as I can't talk to mum and there is no-one else :( .
 

jhoward

Registered User
Aug 3, 2011
183
0
87
west sussex
I really feel for you - funnily enough I'm on the other side of that pairing, behaving very like your Mum, (including that repeating of questions).

I'm still just about sane enough to notice how sad and frustrating it is for my kids (and you of course) but not enough to stop myself from sliding down that slope.

All I can say is to urge you strongly NOT to feel guilty. You're doing fine, better than many and your Mum is lucky. I wish you could get some help and support - I'll be thinking of you anyway.
 

irismary

Registered User
Feb 7, 2015
497
0
West Midlands
Hi Allypally, have you made a claim for attendance allowance? If so it could be used for your Mom to go to a day club or have a sitter come in to give you a break during which you would know she is safe. I am pleasantly surprised how well my husband has taken to both day care and his sitter so much so I have added a second day for day care. It helps both of us. There may come a point that he won't go but whilst he will I'm taking it. You do need a break and it seems to me we often have to sort it for ourselves. It is very hard and you need to look after yourself in order to look after your Mom. Take care.
 

Slugsta

Registered User
Aug 25, 2015
2,758
0
South coast of England
Hi Allypally,

So, a SW assessed your mum's needs (allegedly!), did s/he also assess your needs? You are entitled to a carer's assessment and to help in your own right. a sitter for even an hour or so a week would give you a break and something to anticipate with pleasure.

Other than this, paying someone to come and sit with your mum, or take her out, or for Mum to go to Day Centre might be the answer.

You are doing so well, but you are human and cannot go on forever without a break!
 

susy

Registered User
Jul 29, 2013
801
0
North East
Get someone from the Alzheimer's society or age concern to talk to you.
They are experts in this. They can look at your circumstances. They will advise you what you can claim for and what is available in your local area.
Don't feel bad and don't think others have it worse so you shouldn't complain. This is a really tough time for us all. We are all having different experiences and can help each other. Please share and share and share a bit more. Xx
 

WORRIER123

Registered User
Oct 1, 2015
1,174
0
I didn't get a choice and care was actually forced upon dad by social services. At the time I refused it and dad but glad now we have
He still moans though. He can go to the loo himself but cannot cook but that shouldn't stop anyone having care even if it's the bare minimum
 

Allypally67

Registered User
Feb 20, 2016
21
0
West Sussex
Thank you all for taking time to read and respond to my post :).
I did contact carer support for an assessment of my needs and they advised me to contact SS and suggested day care which is why I contacted them.
Mum does get AA and I did think we could use it to pay for someone to visit mum and/or take her out to give us both a break. The SW did mention a befriending service run by the Red Cross and said she would send me more info but kept saying I shouldn't try to make mum do anything and it must be her decision!
I just want mum to be happier and give her something to look forward to and I feel that would make things easier for both of us. I don't want to force her to do anything!
I just felt the SW was implying I was making things worse and should let mum be more independent.
Perhaps it was just my paranoia setting in? I suppose I do tend to think the worse thing will happen and try to avoid it. Especially when I am feeling depressed myself.
Thanks again. It does help knowing there are others who understand.
 

WORRIER123

Registered User
Oct 1, 2015
1,174
0
I am pushing SS to help with befriending. They said they think age uk do it but still waiting to hear
Did u contact Red Cross yourself ?
 

marionq

Registered User
Apr 24, 2013
6,449
0
Scotland
It is politically correct to say that no one should be made to do anything they don't want to. When it comes to dementia PC goes out the window in my opinion because my husband agrees or disagrees according to whim. I have to make decisions to bring some consistency into our lives and stop myself getting a stroke.

Happiness with dementia is a difficult concept too. Since my husband has a short term memory of about two minutes how does he know if he was happy an hour ago. When I tell him how unhappy I am every morning when he gives me a hard time as I try to get him showered and dressed he seems not to get the point. So what's happiness?

I think we need to try harder to be happy ourselves and hope this rubs off on the person we care for. Right now I am working on this approach because I don't think my health can take much more stress.

Best wishes and hope things get better for you.
 

Spamar

Registered User
Oct 5, 2013
7,723
0
Suffolk
Ally, it's the SS trying to save money. OH went to day care years before incontinence started. It also helps get a pwd used to other people, either at daycare, or coming in to take them out, or both.The sooner the better, imho!
You cannot possibly do it all!

Also agree with everything Marion has said.
 

Allypally67

Registered User
Feb 20, 2016
21
0
West Sussex
I am pushing SS to help with befriending. They said they think age uk do it but still waiting to hear
Did u contact Red Cross yourself ?

The SW only came on Tues but she said she would send me info about Red Cross so I am just waiting for that. I tried looking online but couldn't see anything local so I am keeping my fingers crossed! :D
I will post info when I get it if that would help?
 

Allypally67

Registered User
Feb 20, 2016
21
0
West Sussex
Oh Allypally67, my heart goes out to you. I too have felt just like you. I too was told by Social Services that they couldn't help. This was because I too, like you, was living with and caring for my Mum but she told SS that she could manage and didn't need or want anyone else coming in to her home. I went on alone caring for her for another year without help or respite. Please don't let this be you too. My Mum and I had no choice because we are not self funding and are reliant on Local Authority funding. If they (SS) say no, no it remains, no matter how in need you are. They do not have the money in their budgets to provide care for those who need it, this very subject was even in the national news this morning. If your Mum is self-funding or has some money in the bank and you have POA or can persuade her to pay for it, daycare is a form of respite as others have said. It will not take away the 24/7 anxiety or the terrible feelings of impending doom that have to be dealt with but it will give you a few hours respite a day when you can put this to the back of your mind, do your own thing and know your Mum is safe in the meantime. She may even enjoy the socialising and the cooked lunch. You do matter. Your Mum would not be where she is now, still living at home, if it wasn't for you. You are helping her to still retain some form of quality of life in spite of her illness. I know only too well how hard it is to hold on to those thoughts when the people we care for are so consumed by their dementia and the narrowing of their own worlds (this is part of the disease as we know, sadly, no fault of their own) that they can not tell us this themselves. You are special. Even if no-one in the 'real' world understands this, we TP'ers do. Sending a huge hug and wishing you strength while you try to sort out some time for yourself, somehow.

Thank you Carmar for the understanding and especially for the hug :D .
I had thought it would be better to get some help earlier and get mum used to it BEFORE the decision was taken out of our hands and became "necessary". I admit neither of us are lovers of groups so a one to one befriender would probably be better.
I just hope something can be arranged soon as just lately we have both been very down and irritable and I feel a break and different person to talk to for mum would benefit both of us!
Thanks again and take care of yourself too! Sending a huge hug back to you too!
 

WORRIER123

Registered User
Oct 1, 2015
1,174
0
The SW only came on Tues but she said she would send me info about Red Cross so I am just waiting for that. I tried looking online but couldn't see anything local so I am keeping my fingers crossed! :D
I will post info when I get it if that would help?

Thank you so much. Yes someone different to speak to is what my dad needs too
He's currently thinking its time to get up at 1am xx
 

Allypally67

Registered User
Feb 20, 2016
21
0
West Sussex
Laugh or cry?

Yesterday I went to my Drs to reluctantly ask for a higher dose of my anti-depressant but was told that she didn't think it would help as it wouldn't change my situation!
I had explained about trying to get help from SS but they had basically said no.
I was then told it was up to me to keep on at them?!
I walked home in tears :( . When I got home I went for a lie down and fell asleep!
Mum decided to get dinner on her own.
So we had soggy chips and peas that she hadn't put salt in (we usually just put a little in and when you're used to it they taste awful without!) so I left half of mine but mum didn't seem to take any notice.
Today after going shopping I went to put things away in fridge and found the bag of "frozen" oven chips in the salad drawer!!! :mad:
This comes after I found some cheese in a cupboard the other day going mouldy and found "fresh" strawberries (that I thought had been eaten a couple of weeks ago!) in the freezer!
The SW said mum could get her own food but she doesn't see how much is wasted.
Don't Know whether to laugh or cry! :confused:
 

Allypally67

Registered User
Feb 20, 2016
21
0
West Sussex
Befriending service?

I am pushing SS to help with befriending. They said they think age uk do it but still waiting to hear
Did u contact Red Cross yourself ?

Hello Worrier123,
I said I would let you know when I got info about Red Cross/ Age UK befriending services from SW.
Unfortunately having got the contact info I contacted Age UK to be told they have stopped doing this!(In my area at least.)
I then contacted the Red Cross and was told they only do a "Home from hospital support for carers" befriending service which lasts for 6 weeks after someone has come out of hospital!
So unfortunately I am back to square one!
Have you had any luck finding anything?
Regards Allypally67
 

Greycardi

Registered User
Sep 26, 2015
123
0
Dear Allypally67
So sorry about your situation - it sounds as if you are exhausted and feeling trapped. I don't have any really clever suggestions as I am not in the same situation as you. Only Contact Elderly who collect elderly people and take them for tea and cake at a volunteer's house for a couple of hours. Please take some comfort from the fact that hearing stories like yours helps people like me reflect on what lies ahead. All the best XX
 

Allypally67

Registered User
Feb 20, 2016
21
0
West Sussex
Dear Allypally67
So sorry about your situation - it sounds as if you are exhausted and feeling trapped. I don't have any really clever suggestions as I am not in the same situation as you. Only Contact Elderly who collect elderly people and take them for tea and cake at a volunteer's house for a couple of hours. Please take some comfort from the fact that hearing stories like yours helps people like me reflect on what lies ahead. All the best XX

Thanks Greycardi, it really helps being able to vent a bit and ask questions on here!
Sometimes it is just so isolating, you just feel no-one can really understand unless they have been in this position. Unfortunately there are many people who do go through this (any dementia is an awful thing!) but at least we can truly empathise with others and hopefully our ramblings can help others sometimes.
Best wishes to you too!