I have just joined after becoming a member of Carers UK. I live in SE London with my mum who is now bed bound and has probable dementia. I have lived with my mum all my life. My dad who was in a care home died two years ago. It is only this year that things went pear shaped, as they say. Mum was ill in January, then in February I had to go into hospital leaving her on her own. I was diagnosed with endocarditis and had to have surgery to replace a heart valve and have a pacemaker fitted. Unfortunately, my mum couldn’t cope on her own, despite having carers coming in to help her and support from my brother and best friend. Mum hasn’t been formally diagnosed with dementia but it is there from the things she says and does. I want to know how do people cope when their formerly loving parent starts saying horrible things to you? It is hard for me, especially as I have Asperger’s too.
Hi Julie,
Such a sad situation.
Sadly, if mum is bedbound saying horrible things to you (try to think that’s the dementia talking, not your mum) then she NEEDS a lot of help now, from a team of people.
How to arrange this depends on a variety of things. If you could answer the following questions, it would help us work out what might help. Some of the questions seem odd, but there is a real purpose behind each one.
Does mum own or rent her house?
Is she receiving Attendance Allowance?
Claiming exemption from Council Tax?
Do you have any brothers or sisters?
When did mum last have a Needs Assessment from Social Services?
When did you last have a Carers Assessment?
Does mum have over £23,000 (Just yes/no is all we need)?
Hello again. My mum has two carers come in for her personal care four times a day. We are expecting a physio and OT tomorrow to help my mum get out of bed with a hoist as my mum had a fall in March whilst I was in hospital and broke a couple of toes. I won’t be there when they arrive as I have a hospital appointment but hope to be back before they go. As to the questions.
Rent
Yes
Yes
Older brother who is a train driver and lives in Kent
About six weeks for respite. I had an assessment at the same time.
No
Oh, I forgot to mention that I am still recovering from having heart surgery in March.
You really shouldn’t be doing any caring at all. SSD was told I shouldn’t care for anyone ever again 15 years ago after major cancer surgery, but they ignored it!
You have a serious problem looming, that you need to be aware of.
Unless you are named on the tenancy, if it’s council or housing association property, you will be asked to leave in 4 weeks after mum dies or leaves the property. It’s so very unfair, so important that you make plans for this eventuality.
Are you aware of NHS Continuing Healthcare?
It’s something of a postcode lottery but would mean FREE care for mum, either at home or in a nursing home.
I think the first thing you need to do is get a dementia diagnosis. Speak to your Mum’s doctor.
You are both going to need a lot of support. Xx
Hello Julie
Firstly a big warm welcome to our forum, you’ve certainly come to the right place to chat with other carers. I’m sorry to hear you’re going through what sounds like a very difficult situation, I wanted to highlight some of the options for connecting with fellow carers and for getting support from Carers UK should you need it.
Carers UK are running online weekly meet ups for carers to take some time for themselves and chat to other carers. Feel free to join if you’d like to and there’s no pressure to share anything you don’t want to. I’m sure you’ll find others in a similar position to yourself.
You can find information on how to register to our online meetups at the following pages:
Care for a Cuppa: https://www.carersuk.org/help-and-advic … ne-meetups - This social is a great way to have a little break if you are able to and spend some quality time talking to people who understand what you are going through right now.
Share and Learn: https://www.carersuk.org/help-and-advic … e-sessions - these sessions range from creative writing activities to beginners Latin dance sessions.
There is also Carers UK’s helpline should you need advice or support - Our Telephone Helpline is available on 0808 808 7777 from Monday to Friday, 9am – 6pm or you can contact us by email (advice@carersuk.org)
with best wishes
Ingrid
I am going to contact the social worker who did the needs assessment. She wanted to know if I was named on the tenancy agreement. I am named as the occupant. I haven’t heard about the NHS continuation healthcare scheme. I am sure that when the new tenancy agreement was signed by my mum, I was put down as being a vulnerable adult with Asperger’s so if anything did happen they would look out for me. I will ask the social worker about that and about getting a proper diagnosis as she did mention that too.
That is such good news, I’m so pleased. In the past we have had a number of people made homeless due to the succession rule, as it’s sometimes called.
When you speak to the social worker, ask her for a list of the local care homes that Social Services will fund, then do some research. Sometimes people with dementia can change quickly, so you need to have a “back up plan”. In view of your own health, consider finding somewhere nearby that mum can move into, near enough so you can see her whenever you want, but have restful nights.
I felt a huge sense of relief when my own mum moved into residential care. She was physically frail, we’d tried all the alternatives, but in the end we agreed that residential was the only option left. Having to make the decision on behalf will be even more difficult. Mum’s home was literally on my way to the supermarket, so I could call before shopping, and drop things in afterwards.
Visit the homes that seem to fit the bill best, talk to the Matron, good places have waiting lists.
News just in. I have got an email from Lewisham IApT offering me counselling via phone. I will reply to them tomorrow with a suitable day and time I can do.
Good. Let us know how you get on. I found it took a few sessions to get to know the counsellor before I could open up, so don’t worry if you feel the same. Just persevere.