Being a full time carer

[sunflowercarer]

Hi Everybody,

I am full time carer for my younger sister who is down's and has early onset Alzheimer's. She is 53 and has never been violent or aggressive in her whole life. Lately she has been. I have noticed that if she isn't getting any attention, even from strangers when we are out she starts shouting, very loudly. Things like don't touch me, leave me alone. If it is left to escalate she starts hitting out. She also behave like this when she doesn't get her own way. At first I put it down to the Alzheimer's but on reflection this isn't the reason because she was out with her support worker and started with this behaviour over the last 3 or 4 months. I had to go and pick her up on Saturday and as soon as she saw me and I asked what she was playing at she stopped. Seems to me that she pushes the boundaries with certain people who she knows will not chastise her or nip it in the bud before it escalates. I can tell when she is building up to this kind of behaviour and usually stop it before it escalates by being stern with her, this normally works. Yesterday however she caught me off guard. We walked into a cafe and because I could see where her mood was going we didn't stay, she wasn't happy about this and when I went to take her hand to cross the road she started shouting and waving her arms about. I told her to calm down and bent down to put her shoe back on that she had taken off and she set about me. Totally took me unaware. I did manage to calm her down but it was a very upsetting incident which makes me not want to take her out again. This I don't want to do because she usually loves being outside and we have some of our best times together walking.

Has anybody else had any experience in this kind of behaviour from a loved one they care for?

[Annabellelily Community friend]

Hi there. I’m so sorry to hear about the challenging situation you're going through. It sounds like you're doing an incredible job as her full-time carer, it definitely can be very emotionally challenging, especially when situations like this develop. I’ve definitely experienced similar with loved ones acting in a way that’s out of character and it can definitely be hard to navigate. It might be helpful to reach out to local support groups or Alzheimer's organisations for advice or to Mencap’s Learning Disability Helpline at 0808 808 1111, remember, you're not alone, and there are resources available to help you navigate these challenges Wishing you and your sister the best

[sunflowercarer in reply to Annabellelily]

Hi,Thank you for your reply. I will give mencap a ring, thank you for the advice. X

[Mybestfriends]

Hi I'm also Carer 24/7 for adult Son . As you've said your Sister is acting out of character, I'm feeling that she is or could be, trying to communicate something she is not happy about, but can't just speak it out. Maybe look into Support Worker, are there any issues/changes there. Maybe your Sister is starting to have Hormone changes, or is there any possibility she could be having Hullosinations/Voices. Sorry but she may even be realising as you've said, onset of Alzheimers. Look into, what could be worrying or changed, just about 3 months ago. Mencap are good.

[Chocolate-heals-all]

I wonder whether your sister might also be autistic. Nobody ever thought to check women who had Down syndrome, on that generation, especially if they could use spoken language. If that were the case, she’d now be ready to demonstrate what I have heard termed “autistic burnout” which is that after a lifetime of tolerating stuff that really annoys her she’s now saying “Enough!” Mencap might be able to do a screening test, if you’re in Barnet. My husband and I did it, and others I know. If you get a positive screening then you get referred to a specialist psychiatric service for a full evaluation. My son (who has Down syndrome) got a proper autism assessment and diagnosis by paediatric services when he was nearly eighteen. He’s articulate, normally, an independent traveller, but demonstrates violent outbursts if he’s crossed. Our way to deal with that is to explain things to him but always to leave the choice to him. It does mean that quite often he makes a bad choice. For example, he bought unhealthy food, with his birthday money.

Autism is accompanied by sensory quirks like finding it hard to tolerate certain sensations, certain tastes, and certain physical interventions, and that might explain why she struck out at you. Dementia is often accompanied by reduced impulse control. So you might be dealing with an interaction here. The Lorna Wing Centre is a specialist centre treating and assessing women who are possibly autistic and who also have other accompanying conditions. One can get an NHS referral to them or can attend privately.

In fact, you might be able to tell the GP what you told us and get your sister referred for a psychiatric evaluation straight away. People in my family have dementia. It’s a distressing thing to get one’s head round. Your sister might benefit from some specialist psychotherapy. There is a whole branch of psychotherapy designed to help people with learning disabilities. The Tavistock Centre is one centre for this. You might check out the book by Valerie Sinason called “Mental Handicap and the Human Condition”.

In my experience from following threads in other support groups, in the USA they’re quicker to use medication to help people to stop themselves from flying off the handle. In the UK they’re more keen to try out lifestyle changes. Micro-doses of antidepressants have helped some people with Down syndrome to stay on an even keel. It would need a specialist. My psychiatrist told me that an autism diagnosis radically changes the advice given for psychiatric support, so I reckon that it’s a good idea for your sister to have an assessment by a skilled specialist before anyone makes a proper revised care plan to help her maintain a fulfilling lifestyle as things get more difficult. Personally, I don’t like solving behavioural problems with medication, because there are always side-effects, and mostly there are lifestyle hacks that do the trick. I use unsweetened chocolate and fermented drinks, based on kefir, to improve my mood. Exercise and sunshine are also good, but sometimes it’s hard to fit that into one’s timetable, especially in a dark UK winter.

[SpeedyH]

Hi there. I agree with Mybestfriends comments above. Your sister is trying to communicate something important. The Alzheimers might have reduced her ability to communicate pain/worries etc in a conventional way. Another couple of good source of help and information are the Down's syndrome association and also the Challenging Behaviour foundation.

[skydivesurvivor]

My sister worked in a care home for the elderly, several people with Altsimers were particularly spiteful either biting pulling hair scratching with no pre-indication. Mum had dementia/alzimers and was not aggressive in any way. I have no suggestions only offer SMILES as a release? Good luck