Why is it so bloody hard to keep a loved one in their own home?
Why, when the NHS and Social Care budgets are stretched to maximum capacity, is it so very difficult to say ‘let’s provide residential care in someone’s actual residence‘?
We have reached a point with mum where things are difficult (note the understatement). Her mobility is restricted, she has no understanding about putting one foot in front of another or transferring her weight to maintain an upright position. A geriatrician once described to me the risk of falling in the frail and elderly – he said that it is similar to flying a plane – the majority of problems arise during take-off and landing. Whilst this explanation did little to allay any fears I may have about air travel it is a truth I have seen borne out over years of working with older people. Once upright and moving they become confident and the momentum seems to carry them forward, reinforcing neural pathways and muscle memory. I have described before how getting mum into the car could sometimes be achieved if one could engineer a seamless natural progression from walking, to seeing the open door, to stepping in and sitting down. If there was a pause, all was lost and the series of actions made no sense to her.
Take off (getting out of a chair) and landing (sitting down in a different chair) can’t now be managed independently. They have instead become a project involving at least one other person and a combination of wrestling, heaving and dropping haphazardly whilst hoping for the best. Imagine moving a very drunk person, a person so inebriated as to be almost comatose. Now maybe add in some recreational drugs to instil a degree of paranoia and fear rather than the giggling stupor that would accompany alcohol alone (let’s say someone who has consumed two bottles of tequila and popped a couple of tabs of acid whilst watching the Blair Witch Project and listening to thrash metal). Moving mum is worse than moving a dead weight because she panics and actively resists your efforts. One is constantly aware that the process of transferring her is distressing for both parties; she seems to find it terrifying and does not understand our explanations of why she needs to move – and when your lumbar spine is screaming at you to stop, it is tempting to abandon the project altogether. But sometimes she does need to be moved. She is not bed-bound – yet – and I know too well the slippery slope of decline that will surely follow a period of confinement to bed (pressure sores, blood clots, swallowing issues, chest infections, urine infections, the list of joys is relentless). I would like to delay the inevitable for as long as possible and that relies on keeping her mobile.
Add into the mix the fact that there is now absolutely zero communication between mum and the outside world and the issues become more complex. If mum could understand why we needed her to move her bottom slightly forward into the chair perhaps it would feel less of a molestation. Similarly if she could tell us whether she wanted a drink or if she was getting a bit too hot sat in the sun, then attending to her needs would be infinitely easier. We now have two identifiable emotional states of being – passively ‘okay’ and actively ‘not okay’ – but no real way of distinguishing what causes a shift from the former to the latter. So, as I say, things have become difficult.
However, dad is still managing – whatever that means. The situation has not crossed any red lines regarding safety – mum is not wandering (evidently) and is not exhibiting any of the challenging behaviours associated with dementia (I know there is a universal hatred of that phrase but by ‘challenging’ I mean that mum is not smearing shit on the walls or throwing punches at people’s faces – hey-ho, small mercies). But the situation feels precarious to say the least. The risks of a fall and perhaps a subsequent hip fracture for her are enormous, the risks of a slipped disc or a complete mental breakdown for dad are equally huge. And again we return to the age old conundrum of what are we waiting for? How bad does it have to be before a change is needed? And what is that change? Because, although I’m skirting round the issue, clearly what I mean is, Does mum need to go into a home?
Here is my best case scenario:
- Mum stays at home with dad
- Dad gets carers in twice a day who can get mum out of bed, get her washed and dressed, give her breakfast and transfer her to the sitting room. They would then return at bedtime and reverse the process, popping her on the loo before bed for the necessary (mum is not yet doubly incontinent – as I say, small mercies)
- The District Nurses come in to assess mum regarding continence, pressure areas, risk of infection and alert the GP if there are any acute health needs
- The Chiropodist sorts out mum’s Quentin Blake toenails
- The Occupational Therapist and Social Services Manual Handling Lead (who knew but apparently there should be one) assess mum and provide hoists / sliding mats / raiser cushions / water-flow mattresses as needed
- Dad gets a wheelchair for mum, a nice padded one that is comfortable to sit in all day and has been designed with sufficient ergonomic insight as to stop her sliding down and out of the chair like a blancmange.
- Dad gets a wheelchair-adapted car – he can then take mum to the shops / park / daughters’ houses and, accompanying a more visibly disabled person he would probably discover a greater level of tolerance amongst the public (sad but true)
- Dad has increased freedom and can enjoy time spent with his wife (in a limited capacity) without having to worry too much about intimate hygiene issues or wiping gravy off her chin
- Mum is comfortable, well cared for and in familiar surroundings – her daughters visit regularly and bring the grandchildren – Easter, Christmas and family birthdays relocate to mum and dad’s house like the old days and mum remains central to the life of the extended family
- After a period of time, mum’s health deteriorates further but she has a detailed care plan – inappropriate intervention is avoided, any palliative care needs are addressed and she dies comfortably in her own bed surrounded by those who love her
Cost to NHS / Social Care = minimal
Emotional burden on family = tough but mitigated by knowing we are ‘doing the right thing’
Impact on mum’s wellbeing / quality of life = as good as it can possibly be
Here is what I think will happen
- Bugger all help will be available despite willingness to pay through the nose and sit for hours on the phone waiting to be connected to the relevant department
- Mum ends up in residential care, confined to bed because nobody has the time or the inclination to move her
- Because she is ‘no trouble’ she will quietly moulder in a side room, occasionally attended to by a stressed overstretched HCA who is being paid less than the minimal wage and just wants to get back to her family in the Ukraine, since Brexit has made her feel completely unwelcome
- Mum is visited regularly in the early weeks by her husband and daughters who will become increasingly depressed and guilt-stricken about their role in her incarceration and start to avoid visiting – not least because she will not appear to know who we are, or display any positive reaction to our visits
- Mum develops some sort of infection, the out of hours doctor is called and she is admitted to hospital with little thought as to the appropriateness of such a course of action
- Mum dies on a hospital trolley in A+E – entire family feel terrible about outcome for the rest of our days – Yay!
I will keep you posted…… (she says darkly)