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.
I've seen this exact situation many times myself. I also know that although there are lots of scare stories about residential and nursing care, there are some very good homes as well which exist within a caring ethos. I wouldn't say that I would never want any member of my family to move into a 24 hour care environment, but more that I would want anyone I love and care about (and for, in a professional manner too) to have access to the best care possible whether that is in the home or in a residential environment.
As I am involved in placing people in residential care, I try to run things through my head in the sense of 'would I want my mother/father to live here?' and if I wouldn't want it for someone I love, I think it would be dishonest to recommend it to someone else.
There are indeed some fantastic care homes with excellent nurses and carers.
My mum worked with the elderly in the late 70s and most of the 80s. She returned this line of work three years ago. She loves being able to make, what she hopes is, a difference to the lives of those she cares for and their relatives. Being a palliative care unit she works in, it's all end-stage dementia, cancer etc. that she sees.
She comes home with bumps and bruises that she's picked up throughout the day from those with dementia. She understands that, for the most part, they don't know what they're doing or if they do won’t remember soon. It doesn't change the way she sees them or the standard of care that she delivers to them. She, as a senior HCA, will challenge Doctors and nurses; if she thinks what they're doing is wrong. Out of all the staff she, as care, spends most time with them and understands them rather than the illness.
We (her family, the nursing staff, the doctors and the relatives of those she cares for) keep telling her to bite the bullet and do her two years at uni to become a nurse, she wont...she has no confidence in herself and thinks she'd be a rubbish nurse!
Slight tangent there, it really is a shame when you hear stories like the one you told Shrink, but you’re quite right…if it’s in their best interest then sadly we must go down the residential care route.
Its good to have differing view points on things, it makes life interesting. But ironically I think in this particular case we actually agree!
(Residential care is necessary in many peoples lives and circumstances).
I think my point was badly phrased and wasn't clear.
What I was trying to say was that I thought it was wonderful that Mark cared so much for his relatives that he didn't want to put them in a position he felt wasn't in their best interests.
I think it would be wonderful if everyone had relatives who put them first.
My point rather was that we shouldn't be so quick to judge those who wanted their relatives to be placed in a residential care home rather than to care for them at home, or who didn't want the relatives living with them instead of on their own.
My main point being that we as medical professions do not know what happens behind closed doors and hence we shouldn't be so quick to judge someone who say's "no I can't take them into my home".
Sharing my own experience...as in it is happening in the here and now.
I would like to be in a position to care for my father but at times I am not abel to care for myself properly enough. To have the worries and responsibilites of a constant care role for my father would do neither of us any favours. We both suffer mental illness.
I had severe depression through November and December and my father subsquently went into psychosis in January. Whether or not my illness was a major factor in his decline is debateable..but it definatley was a factor.
I think, particularly when Dad gets so ill, that not only would a care home be a better option than most of the others but think from how he acts and what he says that he thinks it would be a better option.
I don't want to share too much private stuff but there is a strong child element in his behaviour. It is as if he wants to be cared for. I know we all want to be cared for but in this respect, practically cared for.
the dilemma for us is that he is going to be coming out of acute care..with very little transitional support (no surprise there) and I am frightened that he will not care for himself. That it will be down to me to provide the emotional and practical care. I have done some of that in the past but I have never been comfortable or able to provide it all and I really don't want to start now.
And should I get iller and warrant some kind of acute inpatient care. Heaven forbid. The thought of going into a unit (again) fills me with utter dread...well should that happen what will happen to him.
I need to talk to his CPN about follow on care but my experiences of follow on care have been a post discharge 4 week meeting with a shrink.
Considering my father could do a runner in that time or, as he does when ill, stop eating, I am not full of hope that this is going to be an easy transition for either of us.
Such is life.
This is a growing issue. Hospital wards are full of people like this, awaiting nursing home placement.
Your posts are always insightful, but this one was particularly special. It addressed something I have been struggling with recently and gave me the alternate viewpoint that I have not been able to find for myself. Thank you.
I agree with 'best interests' - only a fool wouldn't.
But the two opinions consider only two extremes. What about those options elsewhere in the continuum?
In the days of Tory rule, it was considered the family responsibility to support the family - unless of course you could afford private care. Ideally, family would be great to look after family - but families generally don't seem to function or exist in the same manner they used to several generations ago.
When a carer-partner needs respite from being carer, there should be (and in some cases there are) services to support the carer.
Community support services can provide not only practical and physical support, but also they bring relief and moral support to the carer.
If we wanted to be idealistic then I'd advocate the best interests of the person are to remain at home in familiar surroundings, with your familiar wife, and have the professional or trained help come to you.
As a second best option to this - occasional respite thru the week so carer gets a good night's rest or two.
Thank-you. That was a wonderful post.
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