My last post was a ranty one – hands up, it’s a fair cop. I allow myself a ranty post on an annual basis and this was it (obviously, there is now absolutely zero chance of anything bad happening to mum this year that might warrant further ranting – because that’s how it works – phewf what a relief). The post generated a bit of deserved push-back when some followers took umbrage at the suggestion that residential care would be the horrific Doomsday scenario I had envisaged. Their case, politely and kindly put, was that residential care can sometimes be the best thing since the proverbial sliced bread, and that for me to be perpetuating the myth that these institutions are run along similar lines to Bedlam, was unhelpful and frankly, a little disappointing.
I agree. I overstepped the mark. I painted a picture where, in the one corner we had a pastoral scene of loveliness; mum in the tranquil surroundings of home, attended to by smiling, rosy-cheeked family members and spending her last days basking in the warmth, luxury and comfort of our domestic idyl. And in the other corner we had a Fourth circle of hell, Dickensian workhouse (insert any other literary allegories at will) horror show with mum huddled in a corner, manacled to the other inmates, sitting in filth, howling, wailing and gnashing her teeth. Top marks for me, master of nuance and subtlety; I gave you a binary, Brexity scenario, and we all know how useful that type of thinking is.
In my defence, I was deliberately highlighting the extremes because I was frustrated by the lack of available options. I still firmly believe that if a family wants to keep a loved one at home and if the person is happy at home, there should be the capacity in the system to allow such an eventuality. I am also somewhat blinkered by my professional observations of poor care homes in action; some things you can’t un-see. But I accept that in many circumstances residential care can be a good outcome, sometimes better than fighting to stay at home in the face of significant odds.
Below are some of the very encouraging replies and responses to the last post. They are so detailed and helpful that I felt they deserved their own little slot on the blog (my generosity knows no bounds) and hopefully they will help add a little balance to my previous Daily Mail shock-tactic reportage.
“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 with dementia 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.” – Annabel
“Advantage of residential care = 24/7 staffing/company, professional help with lifting, mobility, eating and continence. We all feel person best off in own home, but condition changes & cognisance/priorities with that. Guilt at considering move may be unwarranted” – Ming
“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.” – David
And a little update on our current domestic arrangements:
- Mum still at home
- Wheelchair in the process of being purchased
- Wheelchair accessible car also being ‘actively looked at’ (dad’s words)
- Chiropodist in attendance (again, privately funded)
- Care agency contacted (multiple agencies contacted but only one replied) and can provide care in home for two hours a day without financial ruin in the short term
- District Nursing team still to respond
- Social Services still to respond
- Dad continues to be bullied relentlessly by both daughters – when describing situation above he said “It’s basically all ready to go when I push the button” – to which the obvious response would be “PUSH THE F##KING BUTTON THEN! OMG YOU ARE COMPLETELY IMPOSSIBLE” etc etc – but if there is one thing I’ve learnt over the past ten years with dad it is that he has to do this in his own time. My sister and I can chew our own faces off with frustration but it makes no odds. At least he seems happier – and at least there’s a plan. And at least we can afford to access the above – WTF do the people who are just above the threshold for social care do?
On that cheery note I leave you – big kisses to you all, especially those who take the time and effort to share your experience for the benefit of others XXX