Look, you sound so desperate I wonder if you could contact your local MP soon as a source of some kind of help. I don't know what they could do but there must be something they could do to get help quicker to your dad. I am so sorry and I know it is torture, I do. i am so glad you are talking to us, please do whenever you feel this low. I am so sorry sweetheart. with love, Geraldine aka kindred.
Desperate for help with my mother.
- Thread starter VickyTwin
- Start date
You sum things up really well, and it’s some comfort to know we are not alone as I was beginning to think we were the only ones who thought the system was crackers. We have got through another week but we have had the help of a fantastic community mental health nurse called Steve. We think he is from the Dementia Crisis Team, but it’s so hard to keep track. He has visited Dad for a couple of hours for the last 4 days. He has sat with him and also done some activities such as sweeping up the leaves. This is exactly what Dad needed, but not only that, more importantly he has listened to Mum and witnessed Dad running round the garden in bare feet and trying to climb the fence. Steve took the trouble to call both me and my sister yesterday to explain he is speaking to Dads Consutant next week to get his medication changed to help calm him down when he is on his own with Mum. Whether this works or not we are just so grateful for Steve and it’s precisely this kind of practical help we need. It’s just a pity none of the other myriad of’carers’ have taken the time to recognise what is required. They should all be ashamed of themselves and in the private sector would be sacked for incompetence. Thinking of you and your Mum and wishing you strength to get through
Oh yes, yes, thank goodness for the likes of Steve ... good to hear this. Most of the system is crackers and punitive but sometimes there are points of light, like this. Thank you. Geraldinex
Thank you Geraldine (also the name of my twin sister). I feel so happy I found this community and appreciate your compassion x
Completely agree. I am struggling to understand how the pharmaceutical world can make sure advanced therapies for cancer, rare diseases but not for dementia.
I am so pleased you have had Steve come to visit and see for himself your battle and for your poor mum too. Thinking of your family
Thank you very much for that advice. Everything you have said is completely on point. I think there will come a time when I cant do any more as its breaking me but she is my mother. I have told my father if it gets too much he has to leave for his own mental health and come and live with me. I know it would be just my mum to fend for herself but I couldnt bear if anything happened to my father with all the stress. Hes old and needs taking care of too. I think getting a POA is never going to happen.
I am so sorry to hear of how difficult it has been for you. I think unless you have had first hand experience of the impact of dementia, then it is hard to imagine the stress, despair and mental health issues carers, particularly family members go through. And that is putting it lightly. There needs to be a big wake up call. Financially the care can be crippling too and I dont know how much of that is public. I have been looking into services and I suppose only wealthy people can benefit from effective and appropriate services.
Sorry guys I have been on a rant about this only because I cannot believe how hopeless everything feels when there is a clear and rationale need for better medical and social care.
Yes I know, I am with you all the way. I believe the problem is just too big for any country or government to take on. Better to delay or look the other way. It is beyond outrageous. And while it may be possible to raise a billion for children in need, people with dementia in need is never going to have the same appeal. I keep thinking there must be something I could do to raise awareness ... I keep trying. All courage to you. With love, Kindred.x
Hey everyone, I know its been a while, but as you know all too well, any developments takes time.
Finally, my mother was diagnosed with dementia 2 weeks ago after a memory test and CT scan. The specialist was amazing, really kind to my mother. Getting to this point has however been a nightmare, and many times over the past year I nearly broke.The GPs were reluctant to listen but eventually they had to, as it was becoming more and more obvious: my mum clearly has got dementia, and I think she has had it for around 6 years, maybe longer.
Since there is a family history of MND (my mum's sister), and I think my mum has FTD, the specialist agreed it would be best to investigate into the specific sub-type of dementia as this will guide pharmacological treatment. However, my mums other sister has AD. So who knows. I am obviously concerned that it is genetic. My mum is only 69 years old.
Thanks to everyone for listening before. I now must embark on a journey to help my mother with care and feeling secure, and also help my father as he is her main carer, and is feeling very overwhelmed.
Lots of love and strength to you all.
Finally, my mother was diagnosed with dementia 2 weeks ago after a memory test and CT scan. The specialist was amazing, really kind to my mother. Getting to this point has however been a nightmare, and many times over the past year I nearly broke.The GPs were reluctant to listen but eventually they had to, as it was becoming more and more obvious: my mum clearly has got dementia, and I think she has had it for around 6 years, maybe longer.
Since there is a family history of MND (my mum's sister), and I think my mum has FTD, the specialist agreed it would be best to investigate into the specific sub-type of dementia as this will guide pharmacological treatment. However, my mums other sister has AD. So who knows. I am obviously concerned that it is genetic. My mum is only 69 years old.
Thanks to everyone for listening before. I now must embark on a journey to help my mother with care and feeling secure, and also help my father as he is her main carer, and is feeling very overwhelmed.
Lots of love and strength to you all.
I’m sorry to hear of your despair. I experienced similar with regards to the health and social services locally 12-18 months ago when my mother aged 86 needed help as her dementia became evident to us. Outwardly to most people she seemed ok as she is a clever woman and wouldn’t want anyone to think she couldn’t manage.
Medication isn’t of much help in dementia but physical “hands on help “is, eg caring people and activities that will benefit your mother. There may be a specialist dementia team or a charity based one you could access to find out what’s available. That’s what I found hard to access- where and what help was available.Choir based musical activities are fun and sociable which you dad or you and mum could go to, amongst other things. It’s a mine field trying to access what help you need in a prompt efficient manner. Hope you get the help you need.
Thank you so much. I have been told there is a dementia team and awaiting further instruction (apparently they deal with the carers allowance, blue badge and reduction of council tax etc, and other care services - if they haven't been in touch i will get on it).
Thank you x
My oh was 69 when diagnosed with mixed and his scans showed FTD .I will say our heath and social services were really helpful .That was two years ago I now have had to call them in again as I am finding things getting harder and once again they are trying to do there best to arrange help for me. Have you got a carers dementia group in your area as it is nice to be with people who understand what you are going through and talking to them can help with ideas on different problems.
