Aggression and early onset dementia

[tomissmymum]

DM, 56, was diagnosed with frontotemporal dementia a few weeks ago after having had symptoms for the last few years. She was in hospital and moved directly from there to a specialist unit for complex dementia .

She was OK first few days then she became aggressive and angry/agitated . The staff are trying to work out her triggers . They’re doing their absolute best and I believe them when they say they’re trying as much as they can, but mum seems to be struggling hugely .

They’re saying she’s physically aggressive towards other patients at times, verbally and physically towards staff especially if she needs a shower etc . She’s seemingly very incontinent now so she does really need showers - they said there’s no medical reason for that other than the dementia, no infection, not bunged up . Won’t take help to go to toilet either .

I suspect she’s finding things frightening in some way and keep worrying that it’s being in a strange home that’s frightening her, but I was told by doctors that I couldn’t sadly care for her at home anymore without killing myself in the process . I keep panicking that by not fighting to keep st her at home I’ve somehow accelerated things .

I’m absolutely devastated in the enormous change in her and how quick this has happened . She would never have really been violent before, she rarely even smacked us as kids .

Is aggression inevitable? when the lovely home staff were explaining things I find it hard to believe they’re still talking about my mum as this is just a million miles from her usual - she was always a very gentle and nervous person before, to hear thag she’s done xyz is such an almighty shock .

I'm sorry to hear what you and your mum are going through. Dementia is very cruel.

Try not to compare your mums personality to find explanations - the dementia has caused damage to her brain and it's not her fault or her personality how she is behaving.

She may find water e.g. shower and toilet frightening. She might be happier with a commode or pads and with flannel washes. Although you find this distressing/difficult it might be less distressing for your mum.

There is no right answer. It is about getting your mum through the best way you can in a way that works for her and her carers/placement home.

A lot of patients manage to hide their behaviour at home, they then struggle in unfamiliar places.
Don’t blame yourself, you really couldn’t cope with her at home.
Unfortunately with dementia you tend to grieve twice, once for the person they were, then again when they die.

Thank you at the moment they have her on regular sedatives plus PRN but trying to find the balance between her being calm and being over sedated is quite difficult I think .

She had trauma in the past which could make being showered very frightening indeed, so it’s possible she’s maybe remembering that . I don’t know .

It’s a horrible, horrible feeling; the grieving twice makes a lot of sense yes . My friend’s dad died a couple of days ago of dementia but he was so much older - she did say she felt a lot of relief for him . That’s the way I feel about mum, I don’t want her to die but speaking to dementia helpline the other night the ‘shell’ is still there but the person my mum was is becoming harder and harder to reach, if not largely impossible, and you only get occasional glimpses on a good day - part of me wishes it was a quicker illness for her sake as she’s obviously suffering horrendously .

Its such a horrendously cruel disease .

Its such a horrendously cruel disease.

It really is isn't it?

Just wondering how both you and your DM are getting on now?

Please don't blame yourself, as a PP said further up the thread people who suffer with Dementia can often mask at home.

She’s started having seizures so not brilliant . She had one at home with me back in May, and then nothing else but nurses said she’s had a few with them . Each time she has one she loses a little bit more too in terms of abilities, speech and language and stuff, so not great at all . They’ve started her on anti convulsants and she’s to go for a scan too . They said it will be a quick illness, very rapid decline . I’m not sure how to feel about that .

The nurse said she’s not distressed just now at least, or not in the last 3-4 days anyway, not as aggressive as she was at all and she’s smiling and laughing with them at times . She’s eating and drinking a bit more too .

Its just shit, when they say, oh she’s had a good day I stupidly think ‘oh! She’s getting better’ and then sinking feeling that she’s still going to die of this . It’s bloody awful .

No answers sadly but wanted to offer my sympathy and good wishes. My DM was diagnosed at 55 and died at 71. Dad was in denial and I spent the first 8 years acting as a carer, housekeeper and his secretary while he tried to carry on as normal. Mum was aggressive, full of energy and very angry. Would spend hours pacing up and down ranting about anything and everything, chanting words like nasty, nasty etc. After I had to leave dad got respite care, day centres and eventually a care home. She did calm down as she got worse and older as I remember. We were told by the gp that with Alzheimer's there are sufferers that have no idea what's happening to them and gently go downhill and those that do know and are mad as hell about it.