Introducing care to a defiant parent

Black and white photo of a defiant old lady

Defiant? Stubborn? Strong willed? Proud? (Yep, that was my Mum).

Think like an 80-/90 year old – they are not always chuffed by the marker in their ever shrinking lifespan that is the introduction of the need for care. You don’t get better from needing help in the house, feeding yourself, getting dressed or bathing. “The carer is a big flag pointedly showing to all my neighbours and friends that I can’t look after myself’.

Your parent has a good point. Their daily competence is very different seen through their eyes – they’ll say ‘I’m fine’ (sound like anyone you know?) but you might not agree. There is a little of the situation that’s the same when you were a teenager – the competence you thought you had was unlikely to be matched by the anxiety your mother had, watching you wobble on a bike/motorbike/back of a boyfriend’s bike.

Bringing in care is often hard, very hard – it is for most people so don’t think it’s just you and your parent. You are asking the person to acknowledge they are no longer capable of looking after themselves. You see it as providing help, they don’t see it that way, they see you marking them as no longer competent. Look through their eyes.

Don’t confront, that never works, and it will damage your relationship with the person, just when you want the opposite. The trick to dealing with an elder is to stand beside them, not against them – they may have a very different perspective on the situation, and it’s their life that’s running out. They may be wrong, but as long as they’re safe and not a danger then that’s OK. (If you’ve ever had children you’ve been here before).

“My Mum wouldn’t let the carer we organised through the door (slightly embarrassing scenes at the front door). She had vascular dementia and just needed someone to check she was taking her meds and looking after herself. We then resorted to just a daily call from the carers but even then she started to avoid answering – which didn’t really help. The solution was to ensure neighbours were aware (of course they already were) and then wait. Eventually Mum got to the stage where she couldn’t cope and knew she couldn’t cope, so she had a carer popping in three times a day till she died. She was physically capable, but her mental capacity just gave up”.

Did I mention Grandy, my mother in law? Completely the opposite, she had severe mobility issues (veins again) so organised - on her own - a live-in carer, who was there for the last three years of her life. Stoic? She always said she wanted to donate her body to science (see below), the vascular problems meant she had toes removed one at a time so we joked she was supposed to donate her body all in one go, not bit by bit. Even though her body was ‘falling apart’ (her words) she was bright as a button and completely aware of everything till the day she just didn’t wake up. Not only had Grandy organised her own PoA when she was in her 60’s, but when she realised time was against her she stuck up a DNR notice on her kitchen window in case a doc or an ambulance was ever called (DNR – do not resuscitate). That’s planning for you.

Donating to science: often there will be a written request for the body to be donated to science, sometimes it’s just a spoken request. If this is the case, you need to start organising before the death – allocate the organising to one family member or executor. It’s may not be easy to find a hospital to take them, be prepared to spend time ringing around. Hospitals have capacity limits, and during winter many are full and won’t take any more. Plus, some have rules about not taking people who have died from diseases such as septicaemia in order to prevent any future infection.

‘When I organised my mother in law’s science wish it was in January and the big teaching hospitals were already full. None in the south would take her due to her chronic disease, others would only take her within three days of death…to the minute. She ended up going to Dundee but had to be there before five days were up – a mad overnight rush by a very helpful undertaker. I just rang hospitals and said, ‘My mother in law’s died, she wants her body to go to science, can you help?’. (Dundee’s medical school run the main European forensic pathology research unit - straight out of a Patricia Cornwell book).