Dear cont'd...
So here are a few suggestions:
For carers:
Carer medals to recognize long service and raise us from our lowly outcast status. To encourage others in the community to acknowledge the contribution that we make. Frivolous perhaps, but maybe we need a ribbon too. And if we are of value to society in what we do, perhaps even encourage those in the society in which we live, to offer concessions on transport and services.
I’ve been offered discounted aromatherapy, reflexology and Indian head massages. The offer was welcome, in that this was a first real attempt to do something to help. Frankly, I would rather have a discounted session with a therapist who might treat my strained back, or dislocated thumbs. Carers’ Assessments are designed to identify unmet needs but there has been little or no mandate to do anything about them. Supposedly, it will change. But realistically - how can it? Who will pay?
Don't give me a herring, teach me how to fish. Free fast-tracked retraining and support for carers who are still standing and who need to return to earning a living and rebuilding a life.
Tax relief on caring items that we buy that are needed at home. Perhaps we could be given an identification number by GPs – (or would GPs have to be paid for that service too?)
Free or heavily discounted access to local sport and leisure centres so that carers can try to repair damaged muscles and hurting heads.
The ability to recoup costs of care from a will. Most wills written in a time of mental capacity arrange for the estate to be divided equally among siblings. The responsibility and provision of care is rarely shared equally. When someone has dementia, there is no re-writing of wills. On the Alzheimer forum ‘Talking Point’, the issue of the “Invisibles” – those who are quick to share whatever is left but who absented themselves from caring – is a very sore point.
Bereavement counselling. The bond when you care is particular and deep. And there is nothing when the caring stops.
For the cared for:
Sensible and full integration of Social Services and Health Services and all stations in between. What is taking so long? What is so difficult? Carers are having to liaise between the various services and make the connections fit – often a lot more stressful than the hands-on caring.
Case notes that are password-protected so that carers don’t have to document profiles ten times over.
The provision of “care directories” with real telephone numbers and clear contact details to any long-term carer specifying whom to go to in the community, for medical help, transport help, advice on benefit issues/entitlements, legal issues etc. Information about the disease and its progression. And in the case of dementia, advice on aggression, establishing ‘safe rooms’, wandering, the use of music, colour and lighting.
Common signage, same colours, same print, same logos, everywhere throughout the community (trains, buses, supermarkets, medical centres, dentists, shops) for all those who need a helping hand.
A proper approach to how equipment is provided to those of us who care, so that care in the community becomes a reality not just a fuzzy buzzy phrase. Hoists that can work in homes; airflow mattresses; hospital beds; rise and recline chairs; grab rails, stand poles. Sensible ramps that are multi-purpose and don’t cost £’000. Not everyone can buy off eBay. GPS for those who wander. One agency to assess and provide – not wheelchairs from GPs, grab rails from Occupational Therapists, airbeds from District Nurses and the rise mechanism from Occupational Therapists. It’s the carers who piece all this together – and it’s a mess.
Proper and early referral to palliative care, according to the WHO definition. I just picked up the phone and asked the local hospice. The correct way is via the GP to a consultant, but pain cannot wait so long.
Proper training for District Nurses. Won’t they need to know more if Care in the Community is the objective? When Mum contracted gangrene our nurses had to Google permanganate baths/how to dress the foot. Have you seen gangrene? If diabetes is rampant and vascular dementia more widespread, gangrene and sepsis cases in the community will rise.
Review of all non-person-centred, nonsensical protocols at clinics and places where people need help, so that carers can summon assistance with the transfer to and from wheelchairs; and we can get to those appointments on time. For someone with dementia, the manoeuvres required to get out of a wheelchair and into a car (stand up, turn around, bend backwards into a space that you cannot see, sit down and move your legs around) – then the reverse at your destination, is complicated and incredibly tiring. Accessing ‘mobility” transport is a non-starter. It simply isn’t available. And private hire is far beyond the means of most carers.
Recruit health-workers and nurses in particular, for aptitude and their values rather than degrees and bits of paper. Training will not fix what isn't right in the first place. Care for dementia is all about positive compassion, and affirmation. Too many nurses who work on dementia/geriatric wards are afraid of dementia as a condition. The few bad apples taint the care of the many who are excellent and who work flat-out for the good of their patients against all odds. Often it is the auxiliaries who do a better job of creating that ‘feel-good’ factor on a ward. Emotional support is a big part of the healing/nurturing process when people are frightened and lonely.
Oblige dentists to work out how to undertake some minimal oral/dental care at home. I had to pay for Denplan for Mum when the local dentist broke away from the NHS. Denplan says home visits are at the discretion of the dentist. Well maybe some dentists just don’t want to. Or perhaps it's too complicated. Catch 22.
Quis custodiet ipsos custodies? It’s a sad fact that most abuse (physical, financial, emotional) of those who are mentally incapacitated is committed by family or friends. Who will ensure that care at home is truly caring? I invited any of the agencies with whom we had contact, to call in at any time, unannounced. We kept diaries in the kitchen detailing every aspect of Mum’s care over a ten year period. I/we never had any “care audit” but those who are cared for at home are vulnerable.
I see so many £M funded initiatives and charters and policy documents about integration, access and self-referral – yet where the real caring takes place, nothing changes and many things are worse.
There are changes that we can make today, tomorrow, that would cost very little and would improve the lot of those with dementia and those who care substantially.
I had a dream the other day that I would no longer be able to afford to shop in a supermarket. For a long while now, most of the clothes that I buy are from charity shops. I don’t always want to “upcycle” – even if that is the fashionable thing to do.
If you have read thus far, thank you. If anything I have written strikes a chord….For until one day there is that magic cure, you the policy-makers, the leaders, movers, shakers in your NHS and SS empires, are all we can depend on.
Sincerely
Michael F
Michael F
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