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New kid on the block - Carers UK Forum

New kid on the block

Tell us a bit about yourself here.
Hi, i'm new to the forum today and just wanted to take some time to blurt it ALL out.

Strangely enough I am not without friends, family and loved ones - but never in my life have I felt as alone as I do now.

I am myself a wife and mother of two little girls, 4 and 2 - needless to say I have my work cut out. I also have a history of depression, although I feel more stressed and irritated than depressed at the moment.

I help care for my 73 year old mother who is suffering some form of mental breakdown, severe depression and anxiety. Some four years ago, our dad passed away and things have never really been the same - she had a spell of feeling ok, but as time moves on, day to day life has become more and more difficult to manage. When she is at home by herself, she doesn't want to get up, eats very little, stops talking to anyone and generally hides herself away. She worries about everything, but to anyone else, she has absolutely nothing to worry about and everything to live for - friends, family including grandchildren, her physical health, money, house .....

I have 2 brothers, each with their own different view of what mum is going through and what is best for her. She lives alone, but during the past 7 months since her illness became so extreme, she has spent periods of time (up to 6 weeks) at either mine or my eldest brother's house.

When she is staying with one of us, she does seem to pick up, but very slightly. If she sees me doing a job around the house, she sometimes offers to do it, but then she can't do it for herself in her own house.

She cannot make ANY decisions at all, which means alot of energy is taken up deciding things for her, which i've found very draining. More importantly, I feel that by making decisions for her, I'm taking away her own independence. My mother has always been an active, busy women, who worked all her life and looked after 3 of her own children and help raise her grandchildren.

The woman I knew as my mother has gone away, short or long term, and I'm left with a someone I hardly know. There is no conversation, no dialogue, some days not even a smile.

Recently, I fought hard to get her off 2mg of diazepam which she was taking in the morning and evening. She also takes 7.5mg zopiclone and 40mg of citalopram. Again, I would like her to come off the zopiclone because I believe the long lasting effects of the sleeping tablet leave her feeling drowsy in the morning and less able to motivate herself out of bed when she is by herself.

All she can say is:

'I'm tired, leave me alone'
'I don't feel like doing anything'
'I worry all the time'
'I don't know what to say, I don't know what to do'
'What shall I do'
'What should I say'

Why am I here? Because I feel guilty, angry, sad, frustrated. When mum is with me here, I can't handle the stress of her constant negativity, but when she's at home, I can't stand it because I know she isn't get the help she needs. I can't win. I have a line of people who need me, husband, children, mother - all wanting something from me and I feel I have very little left to give.

My mum is very special to me, I just don't know how to care for her in a way that will make her better. I don't feel like i've done enough and I can't bare to see her suffering.

She goes to a outpatient clinic at the hospital and takes part in group therapy. The nurses there tell mum that she's not pushing herself enough and that she needs to try harder. This just makes my mum feel worse and every week, she dreads going to the group. What's the point in that. I've asked if my mum could be suffering from early signs of dementia and my opinion was completely dismissed by the nurse in charge.

I am completely at a loss - no-one has any answers and we're left to just plod on.

So here I am, plodding on, still hoping, praying that my mum's mental health will improve.
Oh Isabella - I do feel for you, it's the hardest job in the world looking after our Mum's when all we've been used to is them looking after us !

I think your first point of call is your Mum's GP; you really do need a proper diagnosis. Yes, it could be the early signs of dementia, equally it could be the longer term depression that you describe your Mum as having suffered from since she was widowed. The Nurse In Charge is not the person best qualified to make a diagnosis. Either way you need a firm diagnosis so that you and your brothers can work out what to for the best.

But you shouldn't feel guilty because you can't make everything right - none of us can; we just do the best with the hand we've been dealt - but each and everyone of us is a star and we must never stop telling ourselves that.

I'm glad that you've found CUK; people here are some of the best in the world. They've been there, done that and got the t-shirts to prove it. This forum is for 'letting it all out'; ranting and raving are quite normal - we even get to laugh sometimes (well, quite often actually !!)

Hi Susieq, thanks for your words of support. It's just nice to know that someone is out there. I've read alot of posts from you on the forum and am grateful you found time to reply to me.
Susieq, what were some of the symptoms of alzheimers / dementia that you experienced with your mum at the beginning?
Susieq, what were some of the symptoms of alzheimers / dementia that you experienced with your mum at the beginning?
Although Mum has only been formally diagnosed with Alzheimers for 18 months - on looking back we saw the first signs when she was recovering from her first knee replacement operation in 2004 - at the time we assumed it was the morphine that was making her aggresive (normally passive) and causing hallucinations (according to her the ward clock kept moving round the room). then she kept forgetting what day it was; by the time of her 2nd knee replacement in late 2007, the forgetfulness and confusion had got worse.We told the hospital that she didn't tolerate morphine very well but they went ahead and gave her another opiate which acted in the same way. Whilst she was in hospital this 2nd time she was very confused as to where she was and what she had done.

But it really kicked in when she came home - it took a long time to convince her she was in her own home; she accused us of moving her to a different location "to overcome the inheritance tax"; then she didn't recognise me and was convinced I was my sister. She would forget anything she was told within a day or so and kept asking when she was going home. But mainly it was confusion as to what the day was; what the time was (day / night) and she kept 'losing' things like her keys and cigarettes and would get quite paranoic about people coming in and taking her things.

We are now at the point where she remembers hardly anything that has happened within the last 24 hours; she regularly puts things away and can't find them again; most days she asks when she is going home (and she means where she lived when first married over 60 years ago); she has forgotten that my Dad; her parents and her sisters are all dead now and regularly asks if I have seen them lately. And the latest is asking me when I'm seeing my Mum - sometimes she doesn't accept that she is my Mum.

The next stage will probably be more physical - as in not being to look after herself; not eating; not washing; incontinence etc. Thankfully we haven't had the problem of her wandering off or getting lost yet - her mobility is so bad that I doubt she could get further than the end of the garden path before having to come back for a rest !

However having said all that each case is different; some Alzheimers patients can hide the dementia very well for quite a few years, others go downhill very quickly. and there are a number of other illnesses (like depression) that can give rise to similar symptoms.The only real way to be sure is to get a referral with a dementia consultant via your Mum's GP.

Hope this helps -do have a look at the Alzheimer's website as there is a lot of very useful information about symptoms and treatment on there.

Hi susieq

thanks so much for this. Had an appointment booked tomorrow to go and see the GP but have had to put that back as I have a previously arranged outing with my 2 girls.

We have an update meeting with the consultant pyschiatrist in a couple of weeks and will raise my concerns with him.

It's so nice having someone that can answer me back.

thank you
Welcome to the forum Isabella.
Welcome to the forum Isabella.

I too look after my Mum who has Vascular Dementia, my Mum has been bedbound since last July, is double incontinent and although she can speak it is all made up words that don't make any sense. She cannot read or write, so understanding what she wants is very difficult.

I can't really add anymore advice to Susieq's post, but please feel free to ask any questions that you think of.

You are never alone on here and we will all support and help you in anyway that we can.

Take care
Hi Isabella and welcome Image
Hi Isabella, Welcome.

Karen xx