House and Home – Being Accommodating

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‘?

God knows.

 

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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)

 

7 thoughts on “House and Home – Being Accommodating

  1. My heart goes out to you…this is an awful dilemma. We kept Mum in her own home for nearly five years with live-in care provided by a private agency and cover care for three hours an afternoon, provided by a different agency. Yes, it was expensive, but it was worth it. Where she lived, at least, an OT assessment was reasonably quick, provided one paid for the assessment, and we found a home visit chiropodist. The district/community nurse bit was much harder; we got visits from a community nurse in the mental health team at times (when she hadn’t been discharged by the psychiatrist – something that happened if we didn’t contact the service for six months). We also had a visit from a nurse in the Bladder and Bowel team (different service), who was great and was able to scan Mum at home and sort out the supply of continence pads etc. We also had a very understanding GP who would make a home visit, if necessary. Mum was, however, still mobile and so pressure sores and wheelchairs etc were not potential issues and neither was the difficult moving about, but some agencies at least are able to supply appropriately qualified people.

    That is not to say that everything was plain sailing – getting a urine sample out of Mum if we suspected a UTI was next to impossible and there was, at times, a low level background feeling of enormous responsibility and dread about what else might go wrong.

    Our experience of a care home, now she is in one, is far from your fears and, unless she becomes acutely ill, she is very unlikely to end up in hospital. The care home has a nursing floor as well, with a special section for those who are demented and whose needs are great enough to be on the nursing floor (the dementia unit is headed up by a mental health nurse and always has at least one general nurse among the two on duty as well as the carers). It is not at all a bleak or difficult place to visit. Sometimes Mum is asleep and, when she is awake, she doesn’t necessarily recognise us, but we can still read stories and nursery rhymes together (she knows all the words), listen to music or walk in the care home’s garden. The staff (many, as you suggest, from EU27 countries) recognise us, are friendly and are observably good with Mum, who seems generally happy with their interactions.

    I am happy to talk, if it would help. I hope this gives you my email address.

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    1. Annabel – Thank you so much for this reply – I am thinking that I might do a follow up blog post including some of the more positive stories I’ve heard about residential care settings and how my determination to keep mum at home may in fact be detrimental. I know that I am basing my prejudices on my working experience as a GP and yet again probably need to take a step back and see the situation from a daughter’s point of view instead. Would you be happy for me to include this response in a linked post? I think it would really help people (more than my bleak assessment!)

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      1. Of course I would be happy and I agree with what David has to say too. We can visit any time (we were told before joining that if 2am turned out to be when Mum was at her sparkiest, we could visit then) and there are activities, which Mum really enjoys. When I turned up on Good Friday, she was wearing an Easter bonnet she’d made (with help, no doubt) earlier in the week. She is in a separate, secure dementia unit, as the residential floor of the home is fairly open, but they do mix with others in the home through activities and they honestly do engage each other. Before Mum went in, I spoke to a friend whose father had been in a home. His advice was visit, but do allow her time and space to form relationships with others in the home as they will be important to her. She has and they are and, in fact, so have we. There are other residents who recognise us and engage with us too. My children (16 and 20) and my nephews (19 and 22) visit their grandmother in the care home willingly and so does my 80 year old aunt, her sister-in-law, who lives just round the corner.

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  2. Soon after my wife was diagnosed with Alzheimer’s a retired nurse told me of her experience looking after her husband. She lived by the mantra “I was a nurse, I can look after anyone”. So she looked after her husband at home for several years because she “was a nurse and could look after anyone”. Eventually it became so difficult that she had to give up and her husband moved into a care home. She had failed. After a week she realised she hadn’t failed, she could sit with her husband whenever she wanted, take him for walks and have meals with him. At the same time she could have a good night’s sleep and not have to do any of the messy jobs. After a few weeks she started thinking of herself as a wife not a carer. He was only at the home for 6 months but her memories of him now are of a husband not of a burden.

    If you’re concerned about what happens to your Mum then take control of the situation (along with your Mum and Dad). Look for suitable care homes, visit them and ask yourself “could I live here?”. If your Mum is likely to be self-funding for a couple of years then forget Social Services, they don’t have to be involved. Start by looking at a purpose-built care homes, it will be easier for residents and staff. Your Dad will know that even with all the adaptations you propose a normal house or a converted manor house are not ideal for someone with such mobility issues.

    My wife has just moved into a care home (“put her in a home” sounds like a bad Eastenders ending). Our house was on the limits of being suitable, imagine mobility as you describe but with full incontinence and Parkinson’s causing random falls with no warning. The house had no meaning for her despite the fact that we’ve lived here most of our married life and brought our children up here. Trips out were scary as she had no idea where she was going until we were there. She enjoys company but even if visitors and daycare take up 20 hours per week that leaves 148 hours with just me. She had chosen her care home many years ago as it does daycare through to nursing care. It suits our “ageing hippy” attitudes with no explicit rules and an attitude where the resident knows best and the carers do their best to make it happen. The carers also enjoy this as their job becomes one of making people happy which then carries over to the more routine tasks. One night she was in bed at 10pm, watching her television and eating a bacon bap! She had gone for 2 weeks respite care and after a few days she asked me if she could stay. The activity programme has activities at least twice a day – not just bingo and dominoes but events such as flower arranging, pottery classes and choir, and that’s not to mention ad hoc singing and games lead by carers simply because they can. The home has equal numbers of dementia and non-dementia residents and mixes them fully. Yes we are very lucky to have one of the most forward thinking care homes close to us and it only available for people who are self-funding but it serves as an example of what a care home could be.

    Really what I am saying is that keeping a person with dementia at home is not automatically “doing the right thing” and it doesn’t guarantee the best quality of life. A care home is not a prison, people can visit and residents can be taken out. As the person loses their understanding of their real family they may create a new “family” within the simpler environment of a care home – that’s probably not what anyone wants to hear but it may be the best thing for the person.

    I’m sure your “what I think will happen” scenario does happen sometimes and it hits the tabloid press. The reality is that most care homes are extremely good. Some will struggle with low staff levels, lack of facilities or poor organisation but almost without exception carers care.

    Sorry to be negative about your post, I normally enjoy them and I’ve found them very supportive. Moving someone to a care home can carry a social stigma. There is a hope that things will stay the same if your Mum stays at home, then one day Christmas means nothing to her and a family gathering becomes scary. What matters is what is best for your Mum not anyone else. Maybe I’m hard-hearted but I have no qualms about my wife being in a home, she is happy and looked after with a level of care I could never achieve.

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    1. David – this isn’t negative in the slightest. I am genuinely thrilled that this post has generated the responses it has (nearly everyone has replied in the same vein as you to say that care homes are not as bad as I’m painting them and that they can often be the right thing to do – more right than keeping someone at home where they are unsafe). I really appreciate the time you’ve taken in this response and hope that people will read through your’s and Annabel’s replies and take heart from them – in fact I might use the replies in a separate follow up blog post, would that be okay?

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      1. Yes, feel free to use it as you wish. While I was looking for somewhere for Dad I saw some really bad care homes, some where I wouldn’t keep cats and some that smelled as if they were. Dad was waiting to come out of hospital so we ended up with a home that was just about good enough. With your Mum you’ve got more time. Can you find a home that also does daycare so your Mum gets to know the people? If your Mum is self-funding forget social services and use something like http://www.carehome.co.uk as a starting point. Even if she is reliant of local authority funding it’s still worth investigating yourself. Good homes will welcome visitors at any time and you will know as soon as you go through the door when you find the right one – forget facilities, feel the atmosphere.

        The right time to move is not just about safety, it is quality of life.

        If you can see my email address you can write to me directly and I’ll send you the link to my wife’s care home.

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