my mum

[behib]

I am a regular poster but have nc for this post, it is a sensitive thing for me
I don't want to sound ungrateful or selfish or anything but am feeling so so low tonight
My mum was diagnosed with severe memory loss and depression some years ago now, and both have gotten worse and worse. I just want to help her when she is down or anxious but feel so useless. She has many panic attacks a day and can't do things like get dressed by herself or go out anywhere without getting lost.
The doctors are rubbish and have dismissed her from the memory clinic. She is only on anti depressants. She is constantly saying how stupid she is, how she is an idiot for forgetting things, and how ugly she is. She cries alone most of the time as she doesn't want to upset anyone.
I just want to find a way to help her because I clearly am not doing enough. I am young and feel very stupid and unaware.
I miss my mum so much. She is still here but so very gone and it is breaking my heart. There is so much going on with me and all i want is my mum but I can't speak to her and I can't do anything to help her properly. More than anything I want to help her feel better.
I'm not sure what I'm asking, maybe if anyone has any experience of this? What i need to do/avoid?
Sorry if this doesn't make any sense

Hi, I'm sorry I don't have much advice to offer but I didn't want to just read and run. Your post makes me feel a bit tearful. It must be so hard to lose your Mum in such a slow, painful way.

It sounds like you are a lovely daughter to your mum and that you and she have been let down by her doctors.

Do you feel brave enough to request a review by the doctors?
I'm not in the UK, but can you request some home help for her to assist with dressing, showering etc a few times a week?
Have you or mum got any siblings that help a bit? Even by just spending some time with her?
Where I live there are day respite programmes for people with memory loss/dementia that aim to provide social contact and a break for the family. Is there anything like this where you are?

I am in a similar situation and I have no advice really as it is very difficult for me too. It is so hard knowing that you have lost a bit of the person you love, I know exactly what you mean.

Sorry, no close personal experience but I couldn't let this post just hang.

I just had a quick google about coping with memory loss and the Alzheimer's Society threw up an article on ways to cope.

Are SS enrolled with helping your mum? If not, get them involved. Even if it means (threatening to) leave your mum to her own devices. I've heard that SS are reluctant and tardy about getting involved if a family member can take on the burden of looking after sufferers.

Look after yourself and make a nuisance of yourself with the 'authorities'.

Hugs

Teeny

You sound like a lovely, helpful, kind daughter and you are doing your best under the circumstances. I don't have much advice for you, and hopefully someone more knowledgeable will be along soon. I am in Ireland so things may differ here, but have you tried contacting your Public Health Nurse (am not sure what she is called where you are, but she is the lady who calls when you have a baby, calls to older people who are bedbound etc). She may be able to point you in the right direction.

Contact social services, her GP - ANYONE who may be able to help you. Haunt them until someone listens. Have a look at this www.alzheimers.org.uk/ - even if she does not have alzheimers, they may be able to point you in the right direction.

Do you have anyone to help you IRL? Siblings / DP / Aunts or Uncles? Drag them in for as much support as you can get from them, and everyone has someone in their family who is stubborn and bossy - get them to challenge their forceful ways into finding help for your mother.

Good luck and don't berate yourself, as I said you are trying your best.

Hi everyone thank you for all your replies
I have requested a re referral to the memory clinic from the GP who said that they will do this. The only problem now is mum is refusing to go, but I am going to keep talking to her about it.
I have not gone to SS about this. I am one of 4 children and feel that my siblings should be doing way more (although this is sort of a different post), I work full time and around that I am caring for both of my parents although my mum needs more done for her than my dad. My siblings come over once, twice a month? At most, and that is to eat with us and then leave. And I am constantly worrying while I am at work about what is going on at home. I feel that SS will not grant us any help as, quite rightly, my siblings really, really should be doing more (2 unemployed, one on shift work). Does anyone know more about SS procedure for this kind of thing?
Thank you for the information about the alzheimer's society webpages etc. I have always been a bit nervous about what I will read if that makes sense. I will google the memory loss coping article.
I feel selfish for being sad; I still physically have her here so it is a relief that people understand that it does feel like I have lost her.
Thank you all again, so much xx

I get where you are coming from RE your siblings - my mother is one of eight and she cared for her mother in our family home for several years. Not one of her brothers / sisters offered to help in any way - either practical, financial, emotional help. The sat on their arses and left her to it. It took its toll on my my parents marriage of course. Would your siblings be willing to listen if you arranged a meeting with them? Get as many people on your side as you can, and don't be afraid to ask for help.

Unfortunately, depending on what sort of memory loss your mum has, there may be very little the memory clinic can do.

However they should be able to explain things properly to you and where you can access support.

The Alzheimer's Society webpages are brilliant - they also have their own forum where I think you would get a lot of support too.

Also Social Services will not withhold support just because they think your siblings could do more - they really only expect things of people who live in the same house and even then totally understand that people get exhausted. Please ask for an assessment.

I think it would be good for you to speak to your local Alzheimer's society and find out what the situation locally for support for you all. Our area has a Memory Support Team who are there to point you towards the most appropriate places for help and let you know what local services are available. It seems to vary from area to area as to how things are set up.

Also, as a Carer you are entitled to a Carers assessment which you can request through Social Services. I agree that you should ask SS for an assessment of your Mum amd a Carers assessment for you.

It's incredibly difficult having a parent with Dememtia. There is a thread in the Elderly Parents section on here to support those of us in this position. You're very welcome to come over and join us.

I would also second the advice to talk to the Alzheimers Society.

Caring for someone with dementia is very tough on any and all family members and dementia is known also as "the long goodbye".

You may also want to look at this website as well as it is to do with carers. A very good charity called Crossroads Care and The Princess Royal Trust for Carers merged and this new charity now results:-

www.carers.org/sitemap

Thank you all so much, the advice on here is better than I've ever gotten.
Just a question though- my mum hasn't been officially diagnosed with either Alzheimer's or dementia, although they have mentioned both. I think the fact she hasn't got a diagnosis as such yet is partly due to the fact that she was quite anxious and unable to answer questions/complete tests- although that should have shown them something? Will I still be able to go to Alzheimer's support people even though she doesn't actually have a diagnosis?
I will contact social services- would I go through my GP or directly does anyone know?
Thank you again xx

Alzheimer's Society will be very used to people approaching them because they are worried, rather than having an official diagnosis. Most people with dementia have never been properly diagnosed so it won't be at all unusual.

And you are totally right, her not answering questions due to anxiety is very significant in itself - for example some people cover up how bad their memory loss is by saying they are too anxious to answer the questions.

So it would be worth going back to memory clinic with you having a list of things you want to know - for example, what is the diagnosis, what does that mean for my mum, how quickly are things likely to deteriorate, how can I help her best etc etc. These are just off the top of my head - yours may be completely different.

Hi OP, sorry this sounds like a very difficult situation. I haven't read all the other responses so sorry if x posts. You could support her to visit the GP & ask for a review of meds/ to see a specialist- psychiatrist &/ or neurologist (not a medic so not sure which).
Also ask for an urgent referral to to your local adult care services. You can make the referral to social services yourself too, or support your mum to. Your mum will be entitled to an assessment of her needs at the very least. Ask for a carers assessment for yourself.
Get in touch with local carers agencies, they will have local info.
Charities such as Alzheimer's soc & mind may be able to offer support. All the best

In response to your Q re referral to SS: Your GP can refer, you can refer her or she can refer herself. All will get things moving more quickly but a GP letter would be helpful. Ring them & ask to speak to the duty worker if you don't get a response.

Thank you, I will get onto ss on monday.
This is all so hard i don't feel ready for it at all and feel I can't help her how I should

Contact all the organisations & agencies the previous posters have mentioned.

My Mil became ill nearly 3 years ago & i was in your situation. I working fulltime, 3 young dc,1 with complex SN. Mil was house bound for 9 months, not even mobile inside the house. She made a good recovery & i felt like we were given a second chance.

5 weeks ago we was diagnosed with terminal lung cancer. Its already spread to her brain & liver. 9 Days later she deteriorated rapidly to an almost vegative state. My lovely Mil is gone. We have her body but the women i knew& loved has already left us. I miss her so much already...

I really feel for you as i understand how it feels to be left caring for someone who is only present in body. I cope as Mil has months at the most. You will end up caring for a long time. You need to get help for all your sakes.

Take care of yourself... X

Excuse typos on phone...

SS have a department for the care of vulnerable adults.

You said you are caring for your father too? You definitely need help, it is too much to expect of one person, and you work too. SS should definitely help, but you may need to fight for it as there are so many funding issues now.

They can send carers in several times a day, once a week and anything in between. I have several friends who are carers (working for an agency which is contacted to SS). They do anything from spending 12 hours straight with one person - doing everything including shopping cooking and feeding - to spending half an hour with someone helping them to get dressed.

You would first have an assessment of need, which will involve someone coming out to them and finding out how capable they are and what you can manage to do when you are not at work.

There will be a financial assessment too as they may need your parents to make some contribution towards costs, depending upon their income/savings etc.

It is hell, I know, losing someone a little bit at a time. (((((hug)))))

It may be helpful to have your siblings present when the assessment is done. They may not actually understand how much help your parents need and how much you have to do.

Shellywelly1973 I'm so sorry to hear your story
Thank you both for replying I am going to call social services but worried about my dads reaction ie don't think he will be happy but I really can't do it on my own anymore.
Thank you for understanding xxx