Coping with the Hurt a Dementia Sufferer can Cause?

I’m sure many people have been through this on the board:

Today Mum’s carers were in and my phone went of, I told Mum the Chiropodist was coming and her entire demeanour changed.

Mum is normally good as gold with having her nails cut, but she started screaming that she hated me, I hate you, I hate you. The one carer said she could tell that I was visibly upset.

After the carers had left I just went to my room and lied on my bed for an hour, leaving Mum to watch TV. I think Mum knew she had hurt me as when I came back she held out her hands and started telling me how much she loved me and not to leave her.

I do worry about the future, several of Mum’s carers have commented on her being “Shouty” but never in her life has Mum been rude to me.

Sorry to hear that. How was your mum when the chiropodist came?

Do NOT stay in the room if this ever happens again - unless you have your phone on you and can record it.
This may mark another step down for mum, and her GP needs to know of this change. If you just do a short recording it will help the GP to understand in a few seconds.

Sorry to hear this Stephen
Sounds like a step down IMHO. Time to brace yourself for the mood swings, walk away from the harsh outbursts, try not to engage, as it makes things worse. and treasure the lovely times that you will have. Mum will no doubt forget how she has been, you won’t, but will know its not her, but dementia. Not easy.

You really have to see it as the illness and NOT your Mum. you know if Mum were well she would not behave like this. She does not hate you. You have to remember how she was. My Mum rarely behaves like this, but she sometimes does. I’m braced for the fact that it will probably get worse, but at the moment it is manageable and I know she wouldn’t be like this if she weren’t unwell.

Agree with Sally 100%. I had to deal with dad telling me he wished I was dead one day- and believe me this was not Dad speaking which fortunately I recognised at the time although it was still hard to take and keep going. No one said dementia was easy- Keep giving yourself a reality check that this is not what your mum would mean if she were herself. It is easiest to lash out at those nearest and dearest for dementia sufferers.

Thank you so much for your kind words, I know I can be blunt at times, but this is when I really appreciate support.

I’m actually crying as I write this after reading about step downs…

But just for a laugh I’ll tell you the chiropodist story, I went first to show Mum not to be scared. Would you believe the chiropodist cut my big toe. It hurt, but as Mum was watching I didn’t even murmur. She then proceeded to bandage up my big toe with Mum watching. Not the start I hoped for.

But in fairness Mum only screamed at a level of 8 out of 10 to the point I closed the windows to stop the neighbours calling the police…

I agree with the advice and comments. That said, it is very hard to 'step back’and not take it personally. I had similar experiences with my late father and it was very hurtful as we never had the best of relationships.

All I can say is try to get out as and when you can and get support from the Carers. Also agree go and see GP if it escalates as maybe he/she should know and maybe the medication should be reviewed.

At the moment Mums carers do very little as I live with her and do food, medication etc.

Its just full body wash in the morning and into day chair, then standing aid onto commode for lunch and tea, then standing aid into bed at night…

It does kind of rankle when we get the monthly bill for £2,800 knowing that Mum has only received half, probably less, than she is being charged for.

Mum is currently on no medication for dementia, other than anti-coagulants. Are other medications available that could help?

The only medication that may help, as far as I know, is an anti psychotic, and that is given only if the aggression is out of control, causing danger etc. Or sometimes an antidepressant. Sadly, at the moment there is no cure for dementia, it declines, whether be a big step down, or slow little steps. Its not what any of us want to hear, and coming to terms is very difficult. Others may have a different opinion.
I remember, very well when hubby was in the nursing home, one of the staff, who had worked there for many years, telling me she wished there was some sort of help for relatives to get, to explain about dementia. Some relatives just could not accept the decline, blaming anything or anybody.
Maybe you could contact the Alzheimer’s society. The advice on all dementia, not just Alzheimer’s.

The Forum for the Altzheimers Society is called Talking Point and Pet is correct it does deal with all the different kinds of dementia. If I understand correctly, each case is different and it is very hard to predict the rate of decline. Some good factsheets too so worth checking out?

Thank you all:-)

There does seem to be a common substance to Mums behaviour, when she is left with a wet pad for five hours, despite having four calls a day.

Our Carers seems to think its ok to do an 11 o’clock lunch call and a 4:30 tea time call leaving Mum with five hours in-between calls.

I actually confronted them today, the excuse was NEW CLIENTS, which I almost screamed why are new clients getting a Loyal customers slot. And annual holidays…

Hello Stephen i know what you are going through
my mum has had dementia like your mother for over 10 years i like you am a carer
for my mother we do have like you carers who come 5 times a week
i know it is and can be very uppsetting but it is not your mother it is the illness
my mother allso at times gets very angry and at times says to me i hate you and swears at me
but then a hour or two later she says i do love you
i know it is at times very hard to deal with and i have at times broken down and cryed
but i have too be strong for my mothers sake and try to keep things togeather
i hope i have been of some support to you
if you ever just want to have a chat or a shoulder to cry on
just let me know
kind regards martin.

Hello Stephen, I remember very well the first time I got rudeness from my wife. I was devastated.

However, when I thought about what was happening at the time I decided it was caused by her embarrassment at the fact that I was cleaning the aftermath of her first episode of incontinence so I started to take such comments in my stride.

Like many people with dementia, my wife is losing her communication skills so emotional outbursts can be the only way to communicate some worry or whatever.

Maybe the chiropodist hurt your mum during a previous visit so it was that that was being communicated. I find that emotional responses from a person with dementia have to be interpreted like a whole new language!

Thank you Martin, Blue, Helena and Pet.

I’ve been reading a lot recently, also watching “The Restaurant that makes Mistakes” on Channel 4 has been an eye opener, a must watch for anyone caring for or living with someone who has Dementia.

I never understood the difference between Alzheimer’s, Parkinson’s and Dementia, but to realise they are all part of the same crippling disease and one of multiple classes of Dementia.

One thing I need to do is be stricter with Mums carers, only today one was stood huffing and puffing over Mum because she wanted to finish her last little bit of squash before they put her to bed. Not a big ask.

I have to stop viewing them as acquaintances but employees, a big ask for me as I like to get along with people.

I too have been watching The Restaurant That Makes Mistakes program. The lady with Progressive supranuclear palsy (PSP) I think has a form of what is known as Parkinson’s Plus. Not everyone with Parkinson’s disease will have dementia but some will.

How has your mother been getting on with you and her paid carers?

It can be a hard balance to strike between developing a good working relationship and a friendship between yourself and the carers for your mum, especially if they are in the house four times a day and you see them more than the other people you know or your friends. I know I missed not having the carers come after mum had died. I think you’re doing a great job with your mum. By all means be friendly with your mother’s carers but never forget they are there to provide a service for mum for which she is paying.

Thanks Rosemary,

Mum and I are fine, she does seem to be down at the moment, but her quality of life isn’t the best. Bed to chair and back again, I do my best to keep her entertained and constantly re-assure her.

Mum is generally fine with the majority of the paid carers, but can be shouty at times, especially when they try to rush her on the commode. After three months I look at the rota and know what is going to be a good call, who is going to try to rush it through, turn up late etc…

The sad thing is, as per my posts over a year ago, my Sister who lives 5 minutes away, has now decided a one hour visit a fortnight is to much and now appears every three weeks. As usual unannounced and always on her lunch break or picking up the kids so she can’t stay long.