Most of us, when elderly, won't end up in care. By most of us, statistics show that well over 95% aren't in permanent 24 hour care. Going in to permanent care is, therefore, a relatively uncommon consequence. Too, it is costly. Thus (before even considering patient and carer needs and wishes) it is not undertaken lightly.
Hospital Wallpaper talks good sense. It's unusual for me to find something she says which I take issue with, but I've a different take on this :
It would be wonderful if everyone was like Mark at NeeNaw who declares "no member of my family will end up in a care home".
- Hospital Wallpaper
I don't think it would be wonderful.
I'm seeing a gentleman, Alan who's unable to look after himself (F00.12, dementia in Alzheimer's disease, late onset, severe), with his wife (and sometimes with his daughter, when she can skip out of work to meet with us). I see him every 2 weeks, along with a community psychiatric nurse. The CPN and I go together so one of us can be with Alan whilst the other talks with his wife.
His wife is always in floods of tears. Alan needs supervising, all the time. He wanders at night, and fiddles, often downstairs in the kitchen. He can get out of the house and wander in their garden or on to the road. She has to wake and attend to him through the night, when he's not sleepy and trying to get him to bed is futile. He can't appreciate if it's 7.00am or 7.00pm and needs little sleep so, along with catnaps through the day, needs just a few hours sleep at night. From 9.00pm to 2.00am is quite sufficient. 5 hours sleep, often broken and always poor quality, is not sufficient for his wife. She's permanently knackered.
He can't find words for things and over the last couple months can't generate coherent speech. Often over the last few months he hasn't been able to comprehend what his wife's asking of him or saying to him. Communication is more difficult.
He's experiencing dementia so is blissfully happy most of the time, living in the moment of the here and now with no recollection of recent events. He can't recollect having arguments or resisting personal care or tears earlier, he can pace in his garden, with his wife attending to their flowerbeds, happy as anything. He hums and sings, constantly.
Sadly, his lack of recent memory means he sees his wife as his wife. He remembers her, and their relationship, as it was years ago, when they had great, fun-filled days together. He doesn't understand or identify with her being his carer, at all. She's not his nurse, his support worker, his carer, she's his wife. He knows this and believes this as a fact, it's a distant memory over time that's indelible. So why is she trying to take his clothes off him or shave him or bath him?!
He identifies with himself as a younger man, since that is what he remembers, so that's his reality. He's always known how to wash himself. He's always shaved himself. He's always bathed himself. So why should he have his wife foisting herself on him, trying to do these things for him?
He can't manage a razor or his electric shaver any more. His wife despairs, seeing her proud and tidy and clean shaven husband "go to wrack and ruin" with a scraggy beard and wild, tempestuous hair. Billy Connolly would be pleased, he does indeed look "windswept and interesting" because he is.
Alan can't go to day care. He could, until a few months ago when he caused so much chaos and unpleasantness in patient transport that the ambulance services needed 2 people to convey him and even after a few weeks of this said it was unsafe, so stopped taking him. Not to be out done, one of our team visited every Friday morning and walked him to the day centre. This worked for a month or two until he caused too much bedlam and chaos there, too. Wandering, pacing, resisting care and interventions, fiddling with other peoples' clothes and possessions, social services day care ain't an option now.
Alan hasn't had a bath for months. He has dirty finger nails. He's unshaven. But, he's fed, he's warm, he's hydrated, he's kempt, he's happy and he's loved. His wife dotes over the man, even though she's frazzled and in tears all the time and perpetually knackered.
If Alan is at home, what does he get out of this? He gets his wife splendid company and he gets the familiarity of his surroundings. He doesn't see neighbours. He doesn't go for walks in the local park, use the local library, visit the local shops, attend the local church or use any local facilities what so ever. The location is of no merit to him, it's the people around him and living in the moment that matters, now.
If Alan is in a 24 hour care home, what does he get out of this? He'd get his own room, with privacy. He'd get a lounge, with other people and company. He can sing or chatter away to folk who can sing or chatter back, interacting together. If distraught, he can have skilled staff intervene to give him one to one time and help with reality orientation and reduce his distress, or distract him, or divert him in to singing them a song from a musical or going for a walk in the garden. If the homehasn't got staff to do this, staffing levels matter, so we get Continuing Care funding to pay for the staff so that this can happen. Several folk have 1:1 care all day every day, to ensure they get the care they need and deserve.
He gets stability, security, not having to move again. He gets no stress or strain, all cooking, all cleaning, all laundry, all shopping, all practical care is sorted by someone else. He gets carers. Carers are working shifts so, unlike his wife, are bright eyed and bushy tailed. Carers can try interventions time and time again. If he won't have a bath at 9.00am it can be offered by a different carer an hour later, or by someone from a different shift after lunch, or maybe he'll respond to someone on the night shift and have one just before bed. These are carers, in uniforms, looking like nursing staff, so folks like Alan can identify that (unlike his wife) it is their job to help wash, bathe, shave and help him.
Purely through their role (not skills, knowledges, competencies) they can deliver care that his wife never can. Too, they have familiarity with dementia care so can assist him, morning, noon and night.
Most of all, he gets his wife.
His wife doesn't need to be exhausted and stressed and sleep deprived and worried, all the time. She doesn't need to be strong and cope for him and her, all the time. She doesn't need to try and be a wife, a carer, a nurse, a cleaner, a cook, feed him and every other role she plays, all the time. The care home do all the care. She can visit him every hour of every day, as his wife.
I'd revise what Hospital Wallpaper quoted. I'd rather say, "No member of my family will end up in a care home, unless it's in their best interests." Because sometimes, just sometimes, it is.