I live with my mum ( my dad died 2 years ago with cancer - he was given 2 years and died 3 weeks after his diagnosis). I noticed that mum shortly after my dad died started to get very forgetful and finally managed to get her to see the gp for a test in September 2019. Was told then she would need to be referred to the memory clinic which eventually happened in Jan 2020 and then we waited and waited. Eventually got a telephone consultation in April which lasted for an hour and a half and again nothing. By this point I was surviving on 3 hours sleep a night as mum was now suffering from sundowning. I knew with covid there would be nothing done so I kept going until August this year when after 4 nights with no sleep I started phoning the memory clinic and leaving vms pleading for help. Eventually I got a call back and a nurse arranged to come out to see us however she firstly asked me to arrange blood tests in our local health centre ang gave me a list of what to ask for. I was somewhat taken aback but at this point I was beyond desperate. Needless to say when I rang the receptionist to ask for blood tests she advised that I couldn’t arrange them so I had to ring the nurse back to get her to arrange them. The nurse came out in September and to say the consultation went badly is an under statement. At one point she suggested my mum go to our local nursing home 1 day a week as a volunteer and visit people who have no visitors. My mum is 81 with asthma but lets send her to a nursing home were Covid is running rampant. I was so desperate I said nothing and drew blood from biting on my tongue. The end of the consultation she said that waiting lists were up to 2 years and at this point I offered to go private which I was told would be no good. I started to cry and so mum was eventually given an appointment were a young doctor quizzed my mum for 3 hours with questions like do you know if your mum had a difficult labour with you!!! At the end of the appointment the doctor said you have dementia but we don’t know what type here is a couple of leaflets on tablets you can take, have a read and let us know what you want to start taking. We are now 4 weeks on from the appointment I have had no phone calls, no letters nothing and that is why on a wet Tuesday afternoon I am taking to this forum as I have no idea what to do. All i know is I have had enough.
Dear Patricia,
What a terrible time you have both had trying to get support. I’m not surprised you are feeling desperate, sleep deprivation makes everything seem even worse.
Often lack of sleep and double incontinence are the two things that push carers to seek residential care for their caree, as at this point the care they need is beyond one person. This is something to think about, obviously no easy decision with the current pandemic.
Does your Mum have any support from paid carers?
There is information on getting a carers assessment for yourself here Carer's assessment | Carers UK
and a Needs assessment here, with a view to getting support for your Mum Needs assessment | Carers UK
There is information re the meds that might help here https://www.alzheimers.org.uk/about-dementia/treatments/drugs
Hopefully others will be along who have had experience of caring for someone with dementia soon,
Melly1
Patricia,
What a dreadful state of affairs. I am at a loss to know why mum requires a blood test for dementia. I know of no such test. An MRI can determine vascular dementia. However, in short, you have a dementia diagnosis so from there, I would contact your Social Services department and ask for an urgent care assessment. In the meantime, I would also go to your own GP on your own behalf and stress how this is affecting you personally and ask if they can do anything to speed things up. Perhaps your own MP also. Sadly you need to fight for any support.
What would you actually like to happen? Do you want support so that mum can remain in her own home? Or do you recognise that it might be the time for residential nursing care? With my own mum, as Melly suggests, there came a point when I could no longer cope with her at home. Sadly dementia does tend to reach a point when one person can no longer cope.
It might be worth also seeking advice from a local branch of Alzheimers UK, they will know what support may be available in your area,
I wish you well and if you have any questions, ask away. Sadly many of us have been in your shoes,
Anne
Patricia, I’m dismayed at the way you and mum have been treated. First a few questions, then I’ll be back later on. I know they look a really odd set of questions, but there is a purpose behind each one.
How old are you, and mum?
Do you have Power of Attorney?
Is mum claiming Attendance Allowance?
Are you claiming Carers Allowance?
Claiming exemption from Council Tax on the grounds of Severe Mental Impairment? This can be backdated!!
Does mum own or rent her house?
Have over £23,000 in savings? (Yes/No)
Have any other children?
When did mum last have a Needs Assessment from Social Services, and you, a Carers Assessment?
Back later!
Thank you - that is all I can say. For people to take time out of their day and reply to my email has me in floods of tears. I am going to contact the GP in the morning and say help is needed. I have the EPA already registered one thing my father taught me was to look after the pennies. I have phoned the social workers in my local hospital did get a vm but left a message saying I need urgent contact. I feel a bit foolish as I genuinely thought the health care system would contact me to offer help. All I can say is that it is a good job I am an only child I am excellent at getting my own way and there will be a number of difficult phone calls made over the next few days. I am really glad I joined Carers UK and reading through people’s stories - I no longer feel like I am on my own. I will come back in a few days with an update but I feel a bit of my old determination coming back .
Thank you everyone - stay safe.
We all understand just how tough it is, having “been there” ourselves.
Really pleased to hear you have LPA sorted.
You need to ring Social Services. For me that is Hampshire County Council in Winchester, who arrange the fire service, whereas the local council arranges the dustcarts. Hope that helps point you in the right direction.
It’s time for you to stop trying to be Superwoman, and time to start yelling “HELP”.
Keep in touch, ask whatever you like. You may get four different answers to any question, all different, then you can choose which one you feel is most appropriate.
Hi Patricia_2011
Hi all
I am sorry read about your dad (sympathy) to you.
I do hope you get the help you need. Please do speak to the GP about your health such as about your sleep and you caring for your mum to provide you to services. Maybe a phone counselling appointment to help.
The other people on here have given good advice such as a carers assessment
social services and etc. To help you get services for you and your mum.
I just looked up information. This is to help for Dementia guide
From
Sandalshout
I too am an only child, Patricia, and everything fell on me. On the plus side, you are able to make decisions without consulting anyone else. Good to hear you feel a bit less alone. My only advice at this stage - GP and then lists, every time you have a difficult call, make a note of it, time, date, what agreed etc. You can then email to confirm that conversation. Very useful when you have to refer back to it. Social services hate list makers in my experience!
Good luck, we are routing for you