My name is Samantha I am fairly new to this board.
As I said my name is Samantha, everyone calls me Sam, I am 50 now and I am finding my feet as a part time carer to my 90 year old mother, who had a really bad accident in Australia in 2016. I have been on this board a few times but as I said it is a fairly new forum for me to come too, but I find I am in badly need of advice now and no one can really help as It is just the two of us now, as my brother is living with his girlfriend in Australia and my sister is in Bristol, who has her own problems to deal with, so I am finding it so hard at times. She unfortunately has recently been diagnosed with underlying dementia, one minute she is fine, we go out for the day and have a really nice day together and have a laugh together, but the next when we get home she has bad moments and I just don’t know how best to deal with this as its has caused a lot of arguments.
She seems to have hallucinations or delusions I am not sure, as talks about people coming and going and wonders where they have gone or thinks someone is doing the daily tasks instead of me, when she asks me where they have gone or were they here she keeps saying she wants the truth but sometimes this causes arguments and she tells me to shut up or stronger profanities, which are upsetting for me to hear, another thing I have noticed she can decipher between dreams and reality at times.
My big question is what is the best way to answer when confronted the below questions:-
Have Sam/Jacky gone out?
Where have there gone?
I know you are here now but where were you living before? ( no idea what to say to that one)
Did she come out with us?
Any advice greater appreciated as I am really feel like I am downing here?
Hi Sam,
Welcome to the forum.
Others will be along with more personal experience of dementia, so I’ll concentrate on the money side of things.
Did you know that mum is entitled to Attendance Allowance?
Did you know that as she has dementia, she is EXEMPT from Council Tax?
Are you living with mum full time, or have a home of your own somewhere else?
Does mum own or rent her house?
Does she have over £23,000 in savings? (Yes/No). This is the cut off for help at home.
Do you have Power of Attorney?
I’m really concerned for your own future, as it’s 18 years or so until you will get your pension, and at some time between now and then, you may have to return to work.
Thank you for your kind concern, ok lets answer your questions below
I currently am lucky enough to be working full time and living at home
We get the lower rate of AA, as she does need much help at home.
We only get reduced Council Tax, I didn’t know about being Exempt, does that still apply as I live with her?
We rent from a Housing Association and I think get HB ( not sure about the HB part)
She really has less then 23,000, we have a joint account we more but its for DDs.
Do I really need a POA, as I already deal with the finances and the DDs look after theirselves, as surely if something happened it will just be a case of putting Bills in my name and taking her name off the Joint Account?
It’s great that you have a joint account, may not be worth worrying about a POA, unless you want a Health and Welfare POA.
Mum is exempt from Council Tax by virtue of her “severe mental impairment” ie. dementia, and that is BACKDATEABLE to the date it was diagnosed.
As she has under £23,000, the council would pay towards the care she needs.
The biggest fly in the ointment is the fact that you live with mum. Most councils and housing associations have rules about “succession”. If mum and dad were living there initially, and mum became the tenant after dad died, then the chance is very high that when mum moves into residential care or dies, you will be given 4 weeks notice!
Some councils/HA’s have a different policy if the person living with them is a carer. You must find out asap what the landlord’s rules are regarding succession.
Some forum members have been made homeless as a result, don’t let this happen to you. This may come as a shock, I’m sorry to give bad news. It’s much better you know now so that you can make plans for your future.
Would you feel happy leaving mum for a week’s holiday? Would she be OK at home at night on her own? If not, it’s probably time you applied for AA at the higher rate.
Hi Sam you sound just like me and mum things started 6months after my dad died 5years ago which I put down to grief ,we all lived together and the things she was accusing of were unbelievable I finally went to see her doctor when she was telling people I was trying to kill her. she was put on antipsychotic medication ,antidepressants of which didn’t really work my way of coping was to walk away from her we wouldn’t talk for days.now I know it was the illness but it was so personal at the time.she had a cpn that would come every 2 to 3 weeks until covid hit. things got really bad she was referred to the dementia rapid response team 6 weeks ago who have been brilliant ,changed meds so mum is calmer at the moment but she still has moments and had gone down hill rapidly .they have supported us both but it had to get to the point where I couldn’t do it anymore and a friend called social for help for us. I didn’t want to ask for help but I know I should have been stronger and asked sooner before I did something silly.well wishes to you.
Hi again Sam I have also found the dementia talking point forum really useful over the last few days . I was pointed in carers UK direction by Samaritans that’s I bad I have been feeling ,hope they can help you too.
There’s two choices, truth or lies, but it really doesn’t matter what answers you give, she’ll the ask same questions again in five minutes time or five hours or five days.
Sam
I always tried to answer my late husband’s questions as kindly as I could. For instance if he asked where his mother was ( passed many years ago) my answer would be something on the lines of she can’t come out today, it’s too cold/ windy… for her. Seemed to pacify him. I used to call them kind lies,as better than confusing him even more and causing him distress.
God I didn’t think of that, I naturally thought, if I could afford this rent on my own the Housing Association would let me rent this house as this is a joint tenancy, as it was just us who moved here, but thanks I will find out about that when I next phone up, maybe pop them an email.
I have been away on my own and left my mother to her own devices, but thinking about it that was before the accident (2016), I could go away again, as before all this covid-19 situation I still used to go out of an evening leaving her on her own, she can do most stuff on her own, she is pleased I go out with friends in the evening, but anyway at this odd time I don’t really, although some friends have asked me out Friday night to a restaurant, which I am looking forward too, I just make sure I do her something to eat before I go out, although she sometimes does something to eat for herself in the microwave, plus I phone her during the evening to make sure she is ok, which she is and tells me not to worry.
The only thing is company for her, so if I went away on my own I would just ask my sister if she could come down then for a week, as she wouldn’t like a stranger coming in,
God that’s terrible, she hasn’t accused me of anything like that and hope she never does, although she accused my brother of things when he came back with her from Australia, which was was 4 months after me, we went out there in February and she came back in July, she broke her hip falling down some concrete steps, so was in rehab over there , she couldn’t come back till July as she had a brain hematoma, so they had to wait till the swelling went down until she could fly, so I wasn’t there to play referee as I had to come back in March due to work commitments, so the things she accused him of I have to accept as I don’t know any different, now she forgets that he has phoned so says he doesn’t care, which is horrible for me to hear., we are only really in this situation as one twist of fate, namely that sodding accident everything was fine up until then, I certainly wouldn’t be so much of a carer.
A doctor from the memory clinic phones me up and I update him of the goings on, he hasn’t visited us yet as its an awkward time for everybody, but he said it sounded like underlying dementia. I first phoned as I thought he could prescribe medication for her memory, but knowing she had a head injury he didn’t like to, but still at least he phones to keep an eye on her.
Sounds like me when you just walk away from it all, I shut myself in my bedroom till its pasted, as when I have an argument with her or she starts telling me to shut up etc yes its so personal it hurts, it all gets a bit much sometimes and I get really depressed so much so I think I am better of out of it, but the guilt of leaving her on her own gets to me.
Thanks, I found this forum as it feels as though I have no-one to talk to and confid in, ask questions about dementia as I am really struggling with this disease plus when I do speak to my friends about it, I feel as though I am going on, if you know what I mean and until they experience it they don’t really know.
You talk about my mother being Exempt from Council Tax because of he impairment, I will prob email them regarding this, but do you need to show proof of this, like a doctors note or something?
Good day, Sam. It is not uncommon for people with dementia to talk about deceased relatives as though they are still alive. I endorse the points made by Ayjay and Pet66. I have had to deal with this myself. One additional suggestion that I have found works well. If they mention a deceased relative, take this as a cue to start a light conversation about that person. Talk about something humorous that that person said or did some time ago. People often remember these earlier days quite well and will cheer up when you bring up these past events.
as I had to come back in March due to work commitments, so the things she accused him of I have to accept as I don’t know any different, now she forgets that he has phoned so says he doesn’t care, which is horrible for me to hear., we are only really in this situation as one twist of fate, namely that sodding accident everything was fine up until then, I certainly wouldn’t be so much of a carer.