tag:blogger.com,1999:blog-165440832024-03-08T18:25:30.533+00:00The Dandelion ClockOne Grandma has vascular dementia and lives alone. The other has Alzheimer's and lives with us. Two great - as in gr8 - children/grandchildren hand out the tablets and monitor the memories, and are the salvation of all of us. A muddled, sometimes funny, sometimes poignant, account of the blowing of the dandelion clock - as memory ebbs away and familiar faces turn into wallpaper.Tillyhttp://www.blogger.com/profile/13009061934588684109noreply@blogger.comBlogger50125tag:blogger.com,1999:blog-16544083.post-41676974066698400942015-08-07T17:40:00.001+01:002015-08-07T17:40:28.009+01:00Michael Finnegan's whiskers Part 3b<div class="MsoBodyText">
<span lang="EN-US">Dear cont'd...</span></div>
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<span lang="EN-US"><i>So here are a few suggestions:<o:p></o:p></i></span></div>
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<b><span lang="EN-US"><i><br /></i></span></b></div>
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<b><span lang="EN-US"><i>For carers:<o:p></o:p></i></span></b></div>
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<span lang="EN-US"><i>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></span></div>
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<span lang="EN-US"><i>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?<o:p></o:p></i></span></div>
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<span lang="EN-US"><i>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.<o:p></o:p></i></span></div>
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<span lang="EN-US"><i>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?)<o:p></o:p></i></span></div>
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<span lang="EN-US"><i>Free or heavily discounted access to local sport and leisure centres so that carers can try to repair damaged muscles and hurting heads.<o:p></o:p></i></span></div>
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<span lang="EN-US"><i>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.<o:p></o:p></i></span></div>
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<span lang="EN-US"><i>Bereavement counselling. The bond when you care is particular and deep. And there is nothing when the caring stops.<o:p></o:p></i></span></div>
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<b><span lang="EN-US"><i><br /></i></span></b></div>
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<b><span lang="EN-US"><i>For the cared for:<o:p></o:p></i></span></b></div>
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<span lang="EN-US"><i>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.<o:p></o:p></i></span></div>
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<span lang="EN-US"><i>Case notes that are password-protected so that carers don’t have to document profiles ten times over.<o:p></o:p></i></span></div>
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<span lang="EN-US"><i>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.<o:p></o:p></i></span></div>
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<span lang="EN-US"><i>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.<o:p></o:p></i></span></div>
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<span lang="EN-US"><i>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.<o:p></o:p></i></span></div>
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<span lang="EN-US"><i>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.<o:p></o:p></i></span></div>
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<span lang="EN-US"><i>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.<o:p></o:p></i></span></div>
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<span lang="EN-US"><i>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.<o:p></o:p></i></span></div>
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<span lang="EN-US"><i>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.<o:p></o:p></i></span></div>
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<span lang="EN-US"><i>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.<o:p></o:p></i></span></div>
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<i><span lang="EN-US">Quis custodiet ipsos custodies?</span><span lang="EN-US"> 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.<o:p></o:p></span></i></div>
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<span lang="EN-US"><i>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. </i></span></div>
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<span lang="EN-US"><i>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. <o:p></o:p></i></span></div>
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<span lang="EN-US"><i>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.<o:p></o:p></i></span></div>
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<span lang="EN-US"><i>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.<o:p></o:p></i></span></div>
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<span lang="EN-US"><i>Sincerely</i></span><br />
<span lang="EN-US"><i>Michael F</i></span></div>
Tillyhttp://www.blogger.com/profile/13009061934588684109noreply@blogger.com0tag:blogger.com,1999:blog-16544083.post-47448910369290090892015-08-06T19:34:00.001+01:002015-08-06T19:45:28.288+01:00There was an old man called Michael Finnegan...a Carer's Journey Part 3a<i>He grew whiskers on his chin-egan</i><br />
<i>The wind came out and blew them in-egan</i><br />
<i>Poor old Michael Finnegan, begin again...</i><br />
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And so, must you begin-egan, dear old (and not-so-old) but oh most certainly, weary carer.<br />
So must you begin-egan, no matter what winds might blow and buffet you.<br />
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For at the end of the "journey" (how I have come to dislike <u>that</u> word!), at the end of your "carer's career", you will probably have to return to work to recoup all the hundreds and thousands you have spent in caring. <br />
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Somewhere, there is a job description for carers. No time off, no public holidays, no pay - most carers get the joke. What it doesn't say, however, is that there is no chance of promotion or career progression. No retirement fund. Because when it's over, it's over and all you can do is hope that you can begin-egan.<br />
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So here's what I wrote to the government:<br />
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<span lang="EN-US"><i>I am writing to you as an ex-carer and as a
current carer for parents who had and have dementia and who have continued to
live at home. </i></span></div>
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<span lang="EN-US"><i><br /></i></span></div>
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<i><span lang="EN-US">I cared for Mum for 17 years until she died last year,
firstly as a long-distance carer, finally as a hands-on carer when I
relinquished a much-loved job and career to fulfill my duty of care as Mum’s
Welfare Guardian and a duty of love as her daughter.</span><span style="color: windowtext; font-family: Times; mso-ansi-language: EN-GB; mso-bidi-font-family: "Times New Roman"; mso-bidi-font-size: 10.0pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></i></div>
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<span lang="EN-US"><i>My experience as a carer has been life
changing; and I don’t regret the sacrifices that we, as a family, have had to
make. But so much is written and spoken about the role of carers in our
society; about the £ 10 Bn+ or so, that we save the economy; about the drive
to promote “Care in the Community” and the need to avoid unnecessary admission
to hospitals, that I feel I must comment. <o:p></o:p><w:sdtpr></w:sdtpr></i></span></div>
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<span lang="EN-US"><i><br /></i></span></div>
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<span lang="EN-US"><i>The “career” of the long-distance carer
spans up to two decades, sometimes more. That means that many of us are holding
down two jobs at the same time, that of working and paying our taxes; and that
of caring and meeting high costs for which there is no tax relief. In my job
as a self-employed minerals analyst, I travelled extensively. Each time I
left, I had to put live-in care in place for Mum – none of which was
chargeable to a job, none of which was tax deductible, all of which was
essential for her welfare and for my peace of mind. <o:p></o:p></i></span></div>
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<span lang="EN-US"><i>In addition to live-in care, I had to
fund gloves, wipes, and disposable aprons, replace laundry appliances which
were in continual use, carpets, redecorate and pay year-round heating bills. <span style="mso-spacerun: yes;"> And i</span>n the last seven years of Mum’s life, I gave
up work to care for her. I received the welcome support of 65% funding via
Direct Payments/Self-Directed Support but inevitably lost my place on my own
career ladder. I lost a regular income. My savings (£ 100,000+) depleted
rapidly: as Mum’s care needs grew, they were used to make up the shortfall and
feed and maintain my own family. As you know, for most of us, the Carer’s
Allowance is a pittance that barely covers grocery bills.<o:p></o:p></i></span></div>
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<span lang="EN-US"><i>I fought hard for Mum to be able to live
at home, a wish that she had articulated clearly prior to the onset of
dementia. Abandonment ran like a leitmotif
through her life: consigned to an orphanage at three, separated then divorced
at sixty by a husband she adored; then as dementia entangled her mind,
left behind by others in her family and by longtime friends who simply couldn’t cope. For the last ten
years of her life, she never saw my brother’s children again while my brother, her other Guardian, visited only two-three times a year. Life is unfair – but perhaps it needn’t
be this unremittingly hard.<o:p></o:p></i></span></div>
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<i>Carers can get concessions, here and
there, at the cinema perhaps, or even in sports clubs. If we have the energy, some
of us try to stay healthy and to fight that carer stress to which we are all
prone. But many of these concessions are based on accompanying the person for
whom you care. It’s a good idea for those in the early phase of dementia. For
those in the mid-latter stages of the disease, it’s quite impossible. So at a time when we are all urged to take
responsibility for our own welfare, carers are again excluded by the high fees
that most leisure and sports clubs charge – yet we are one section of society
who perhaps needs it most.</i></div>
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<span lang="EN-US"><i><br /></i></span></div>
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<span lang="EN-US"><i>I approached Live Active several years
ago now to press for greater concessions for carers but my pleas fell on deaf
ears. I doubt very much whether there would be armies of carers fighting for
space on the treadmills but it would have been nice to help a few.<o:p></o:p></i></span></div>
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<span lang="EN-US"><i>Care in the Community is a laudable aim
and I see so many initiatives that are given huge funding from the Lottery
Fund. Here at the very bottom, it doesn’t seem as if much has changed. </i></span></div>
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<span lang="EN-US"><i><br /></i></span></div>
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<span lang="EN-US"><i>The NHS
and SS are still left hand, right hand, oddly malco-ordinated. Why is there
still no central database of information that is password protected? Why must
we recount our profiles ten times over for it to be diligently recorded by
each agency that visits in a different format and on a different database? Yes, I know about integration. But people make the rules and the mindset. And just reciting "person-centred care and personhood" like a mantra doesn't exactly work on the carer's chakra.<o:p></o:p></i></span></div>
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<span lang="EN-US"><i>Care in the community, dementia-friendly communities. As the disease progresses, and care
needs amplify, who will provide hospital beds, variable airflow mattresses,
hoists, bath aids, stand aids, rise and recline chairs and wheelchairs? I
bought rise and recline chairs and wheelchairs off eBay. I installed a
lap-dancer’s pole to enable Mum to stand when she was suddenly discharged from
hospital as the ward closed due to a virus. Caring at home means that you need
answers urgently – not after forms are filled in duplicate and triplicate, the
budget approved, item checked and then installed ? weeks, months later.<span style="mso-spacerun: yes;"> </span>And if you are fortunate enough
to secure a hoist, can you drive it over carpets, can you manoeuvre it through
normal UK home doors? Most people can’t.<span style="mso-spacerun: yes;">
</span>No one seems to have thought through these practicalities.<o:p></o:p></i></span></div>
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<span lang="EN-US"><i><br /></i></span></div>
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<span lang="EN-US"><i>There is indeed provision for hospital
beds at home: <span style="mso-spacerun: yes;"> </span>in the last two weeks of
life.<span style="mso-spacerun: yes;"> </span>By this time, as a carer, your
back is probably already damaged by the lifts and half- lifts that we all do over
and over again to make those whom we care for, comfortable and safe. As carers,
particularly of those with dementia, we do everything we can to keep the
environment the same. To maintain continuity.<span style="mso-spacerun: yes;">
</span>Hospital beds probably need to be installed long before death casts its
lengthening shadow.<o:p></o:p></i></span></div>
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<span lang="EN-US"><i>And hospital. Oh, that sad threatening
place where patients have become service-users, clients and customers. It’s
not Tesco’s or Apple Genius bars. The word “patient” derives from patior
(Latin: to suffer) and there is real suffering. And it’s not disrespectful
to acknowledge that. </i></span></div>
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<span lang="EN-US"><i><br /></i></span></div>
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<span lang="EN-US"><i>Butterflies above hospital beds and ‘About Me’ booklets
don’t cut it when those who are given buzzers have them placed out of reach because they buzz too often. When the 'About Me' booklet is actually about the person in another ward, in another bed, in another place.<o:p></o:p></i></span></div>
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<span lang="EN-US"><i><br /></i></span></div>
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<span lang="EN-US"><i>The criticism of dementia care in
hospital is legion: food that is placed out of reach; un-takeable tablets and
medications; no-one there for a reassuring hug (oh, those person-centred protocols!) but plenty of reprimands for
the patient who frets or wanders. People left to pee and soil their beds.
Nurses* who won’t nurse because of…what? Degrees? Pointy-haired
bosses? Porters who feel bad because they cannot assist carers to get elderly
ladies out of a car for an appointment because they ”cannot touch female patients”. On one occasion, I approached the
paramedics out of desperation. “We can
come if you push your mother out of the car onto the tarmac,” they said.
This doesn’t cost money to fix. It just needs common sense. Booking a porter
shouldn’t be impossible. We need leadership instead of bureaucracy and administrators.<o:p></o:p></i></span></div>
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<span lang="EN-US"><i><br /></i></span></div>
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<span lang="EN-US"><i>One day, I realized that Mum was severely
at risk if we were to have a fire at home. Occupational Therapy proposed a
ramp. It was a sort of highway superstructure that would have taken up most of
the front lawn and drive, and cost around £ 10,000 or more. What if the fire
had been at the front? No way to evacuate then and no quick access for the
Fire Service, so how did that tick health and safety boxes? </i></span></div>
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<span lang="EN-US"><i><br /></i></span></div>
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<span lang="EN-US"><i>I ordered a top of
the range ramp at £ 200+/- that we could use safely at the front or the back.
But because it wasn’t part of The Plan, I had to fund it alone. Competent
professionals are being straightjacketed into solutions that fail to serve the
very people whom they aim to help.<o:p></o:p></i></span></div>
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<span lang="EN-US"><i><br /></i></span></div>
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<span lang="EN-US"><i>WHO defines palliative care as care for
those who have long-term degenerative illnesses, not only for the dying. Yet
in dementia, palliative care is more often than not brought in as death
approaches. Pain is relatively easy to deal with – if only you can get the
referral to the experts when it’s needed, and not when the system deems fit.<o:p></o:p></i></span></div>
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<span lang="EN-US"><i><br /></i></span></div>
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<span lang="EN-US"><i>And when your caring days are ended,
where do “old” carers go? Our time-management skills are second-to-none; our
stamina is tried and tested; we’re the ones who have tenacity, who don’t give
up, who “can do’ and ‘will do’. Many carers, sadly, will be so crippled by
their endless hours of caring that they are too exhausted physically and
emotionally to begin again. Yet there will be some, like me, who are still just
about on their feet. How do we get back to work to recoup those hollowed-out
funds? Where do we go to retrain? </i></span></div>
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<span lang="EN-US"><i><br /></i></span></div>
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<span lang="EN-US"><i>As a graduate apparently, I have no right to
further paid education. <o:p></o:p></i></span></div>
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<span lang="EN-US"><i><br /></i></span></div>
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<span lang="EN-US"><i>After Mum died, I went to the Job Centre
and received two weeks’ benefit. To spend my time applying for jobs for which
I have no updated skills just to prove that I was “trying” made no sense. So I
embarked on an IT course at my own expense (excluded from funding because of
my degree) to update/upgrade skills. My old job/career is closed to me:
associates, networks, knowledge skills have moved on. I enquired about
retraining as a nurse for palliative care. Too old. An accelerated law degree?
Would I get a placement post university in a law firm at 50+ years old? A year ago, desperate for some funds coming in, I took a job as a cleaner. <o:p></o:p></i></span></div>
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<span lang="EN-US"><i><br /></i></span></div>
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<span lang="EN-US"><i>I’m not at all too proud to work but is
this really all that carers can hope for? I’m still caring for our one
surviving parent, up during the night; still with two dependent and wonderful
children; and out on my knees cleaning someone else’s toilet. <o:p></o:p></i></span></div>
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<span lang="EN-US"><i><br /></i></span></div>
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<span lang="EN-US"><i>In the last thirty years, I’ve held down
my own job concomitant with caring; fulfilled my duty as a daughter and a
Guardian, saved my country huge sums of money (apparently). I’ve given up my job, my time,
my own funds and staved off those unwanted admissions to hospital. <span style="mso-spacerun: yes;"> </span>I’ve served on carers’ committees, steering
committees, policy input committees.<span style="mso-spacerun: yes;">
</span>Always with the hope that somehow, I could improve the lot of those who
care and who are cared for – but I wonder how many psychiatrists, doctors,
therapists would pay to sit in these meetings, as all carers must. Because we
pay to put in care when we are not doing the caring. I and others like me, have
served longer than the dedicated men and women who serve in the armed forces.<o:p></o:p></i></span></div>
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<br />Tillyhttp://www.blogger.com/profile/13009061934588684109noreply@blogger.com1tag:blogger.com,1999:blog-16544083.post-14231050047397197622008-05-15T15:36:00.001+01:002008-05-27T19:43:50.254+01:00Needful Things Part 1.1A clone!<br /><br />Was it hubris?! Completely stalled after only one posting about NTs! I really <em>do </em>mean to compile a list, a proper one, about NTs - and yes, I am painfully aware that sticky labels alone Do Not Cut It. Labelling (now rather quaintly called <em>'signage') </em>is not the answer to The Universe and all things but it does help<em>.</em><br /><em></em><br />The hiccup is nothing more than two sick children (nothing serious), visitors (lovely), sorting out respite for Mum and LGP so that we can take a break in the summer, and now my being away at what I laughingly call work. H2 is mystified. "Why go, when you don't even earn any real money?" he asks. Because it keeps my brain alive, because there is still a bit of me that is the person I was before I became the person that everyone needs me to be. <br /><br />So in the interim, best wishes and large hugs to all my fellow carers because I haven't managed to keep up with your blogs either and...if you see my clone, just point her this way. Please.<br /><br />(Needful Things coming shortly to a blog near you).Tillyhttp://www.blogger.com/profile/13009061934588684109noreply@blogger.com4tag:blogger.com,1999:blog-16544083.post-33874852625657261362008-04-29T21:25:00.005+01:002008-04-30T00:34:05.733+01:00Needful Things: Part 1!I owe a huge debt of gratitude to the many people who have helped Mum and me as we stumble on. As time progresses, I've inevitably moved up the learning curve - but maddeningly, there is no central information service for dementia, and no directory as to who does what or even what you might be entitled in the way of help*.<br /><br />Most of the time, I have operated on the premise that if you don't ask, you don't get. One day, when I have more time (laugh maniacally and collapse of stout party as Dickens would say!), I am determined to compile a directory - a sort of Filofax guide that could be personalised and updated - in the hope that it might just help others to take a few shortcuts - or afford another carer five precious minutes to come up for air. So just for starters, I thought I would try to compile a list of basic things that I have done, or found, in case it helps.. Many of them are just plain obvious but if anyone would like to contribute, please do. All suggestions are welcome!<br /><br />Starter for 10. Here are <strong>Needful Things</strong> Part 1:<br /><br /><em>Early stage dementia</em><br />1. If you are trying to cope with the initial stages of dementia long distance (since that's where so many of us start), try to <em>list as many useful phone numbers as possible before you need them</em> eg. best friends, neighbours, GP, pharmacist, police, Community Psychiatric Nurse, locksmith, plumber, electrician, local gas board or utilities provider, local bank, solicitor (ours visited Mum in hospital when she was sectioned to draw up the initial PoA), named & tame taxi driver. If you have PoA, duplicates of appointments and documents can be sent to you. And neighbours are far more willing to help if they know that they are not going to be "lumbered" - so make sure too that they know how and where to contact you.<br /><br />2. <em>An A4 diary for public consumption that is kept in the house as a public reminder for appointments etc. is a huge help.</em> List all the phone numbers in the front. If need be, put up a reminder of things to do before leaving the house on a pinboard - check doors, switch off oven/fire, remember keys. I also printed out "<em>How to.."</em> instructions for Mum for the oven, the washing machine and the tumbler which I stuck on the inside of cupboard doors. Shortly after that, we had to label the doors too so that she could remember where to put things. It took the fun out of hunting for them! but made life a lot easier. Luckily, Mum did not suffer from sticker-shock though I'm sure others might be a lot more sensitive about having labels peremptorily stuck on everything.<br /><br />3. Leave a folder or box for correspondence. Or A4 envelopes, stamped and addressed to you, so that incomprehensible letters can be sent on. (Yes, I know it doesn't help when the envelope/folder is squirrelled away still working on that one...)<br /><br />4. Set up the phone with single-digit dialling so that 1 = you, 2 = sister etc. Mum found it easier to remember pictures than numbers so I replaced the digits with pictures instead. It also helps to cut down on mis-dialled phone numbers etc.<br /><br />5. <em>Find out whether Tesco or Asda deliver - and if not, speak to the local supermarket/grocer to find out if they will</em>. Or, if they will provide a "shopper" to help. In the early days, Mum would sometimes find herself in the middle of the shop and couldn't remember what she was doing or why. By the time, she got to checkout, she was already in a tizzy - and then she couldn't understand the money. Mum was discharged from hospital early and had no food - but the taxi company sent "our" driver to collect her - and because I had already been round to see them on a previous visit, he very kindly did some shopping for her and just put it on the bill which I paid. The taxi driver was brilliant - he ushered Mum on and off buses, carried her luggage for her, put on lights and heating in the house and made Mum a cup of tea. It was worth far more than the little extra that was charged. And the supermarket were more helpful that I had expected in assigning Mum a lady to help her shop. That was before Tesco home delivery - and though I offered to pay, they did it free of charge.<br /><br />6. <em>Getting to and from medical appointments.</em> Loss of independence in getting around is a logistical mightmare. But many local surgeries offer voluntary drivers (either free of charge or for a nominal fee) to pick up and drive home. I didn't know about it - until I asked.<br /><br />7. <em>Tablets and prescriptions can be made up in dosette boxes</em> (by days of the week x am x pm) and delivered to the door by pharmacists. It isn't a service that is advertised - but ask. Anything that makes life easier, right? It doesn't resolve the issue of taking the tablets not at all, or ten at a time...but that's another story.<br /><br />* <em>I ought to add that the Alzheimer's societies and associations produce a range of very helpful leaflets but I've still found that the best help has been word of mouth. I have to say that I started this journey more than 12 years ago and perhaps there is better guidance now than there was back then - so this is offered in the spirit of Polyanna's Pratical tips!</em>Tillyhttp://www.blogger.com/profile/13009061934588684109noreply@blogger.com7tag:blogger.com,1999:blog-16544083.post-44387262699072220232008-04-28T22:45:00.003+01:002008-04-28T22:52:22.603+01:00Dedication<strong>Diagnoses</strong><br /><em>for my parents</em><br /><br /><em>i Alzheimer’s</em><br /><em></em><br />Once she found a goldcrest’s nest,<br />tucked it carefully in a crook, made sure<br />the entrance was clear and open.<br /><br />Recently the winds have blown it far<br />from the tree, are gently taking it apart.<br /><br /><em>ii Infarct</em><br /><br />The last dominoes perch unsteadily.<br />The rest have fallen so that their black<br />sides are uppermost, the numbers<br />and the narrative mostly obscured.<br /><br />(Published in <em>Pendulum: the poetry of dreams</em>, ed Deborah Gaye, Avalanche Books 2008)<br /> Copyright Roselle Angwin 2007.<br /><br /><em>Reprinted here with kind permission from the author</em>Tillyhttp://www.blogger.com/profile/13009061934588684109noreply@blogger.com0tag:blogger.com,1999:blog-16544083.post-27610331622026949952008-04-25T12:18:00.005+01:002008-04-25T14:26:58.371+01:00Telling it like it isRecent posts by other carers (Wits End & Alzheimer's Moments) have got me thinking. Which is great,because so often I find that I am so busy being busy like Rabbit, that I don't have time to stop and think. And the conundrum is this: what language do people with dementia speak? How do they tell us what they want to say, and how do we interpret it? And when all's said and done, given that most dementia contains an element of paranoia, is it credible?<br /><br />This is one of the hardest things of all. There's no linguistic divining stick that will point you in the right direction. And dementia isn't like the Enigma - devilishly difficult but once you have the decoder, you're unlocked. It isn't a one size fits all. I guess the answer lies simply in knowing so well the person whom you are caring for, that eventually the verbal and non-verbal clues stack up.<br /><br />Mum had and still has, latent paranoia. Ten years ago, it started with the central heating. Joan of Arc heard voices and Mum heard the central heating. We never quite decoded CH speak but it culminated with her being found in our village, wandering in her nightie. I was 500 miles away at the time but got a call from my father at about 3 in the morning, asking me to Sort It Out. Daddy had remarried and the divorce had been acrimonious.<br /><br />When I eventually tracked Mum down via the police and the local hospital, she told me in whispered tones that I had to contact the Queen to beg for a stay of execution. It was just one of the funny episodes that we've been through with Mum. Funny with hindsight but deeply upsetting at the time. She was terribly alone, terribly scared and convinced that she was about to be executed. Luckily, she was in the care of an old-style nurse - a kindly soul blessed with great commonsense who knew exactly what it was all about. UTI. Hadn't heard of it at the time, but it now just trips off the tongue - Uterine Tract Infection. And it sends you very loopy, very, very quickly.<br /><br />I've since learned that the elderly in general, and those with dementia in particular, are prone to UTIs. It's less to do with personal hygiene, and more to do with dehydration and not drinking enough to flush the toxins out of your system. (Cranberry juice is a helpful preventative but needs to be diluted with water to render it less acidic.) Often the remedy is very simple: a blast with antibiotics (watch the constipation!) and it's soon sorted.<br /><br />So UTI is paranoia with a twist. But over time, I have also realised that just because clarity has long departed Mum's turn of phrase, that doesn't make her an unreliable witness. Last night when I visited her, I found her (unusually) unhappy. She was lying on a soiled sheet, in soiled clothes, half asleep. Not usual at all.<br /><br />So I managed to coax her up, wheedle her into a shower and from there into some warm PJs and a freshly made bed. I even managed to dry her hair and cut her nails, a major achievement! Finally, she started to look a little happier and settled down to sleep. Her conversation had been a jumbled tale of being told off and being pushed in the cupboard. Nothing too alarming there - the tiredness that accompanies nightfall tends to exacerbate the latent paranoia. What was slightly different though, was that she looked hounded.<br /><br />Dirty clothes and dirty sheets wouldn't worry Mum. She simply doesn't notice any more. But when I checked in the diary to see who had been in that night, it was a carer who finds dementia difficult. I don't know whether it's impatience, a lack of understanding or wilful misunderstanding. Or perhaps case overload. But she's the only carer to complain habitually that Mum is rude or stroppy. In response, I leave notes apologising and explaining that unfortunately, it is Mum's illness that makes her behave this way.<br /><br />Not so long ago, another carer called me to say that Mum looked upset. She called because mostly (and thankfully), Mum is a cheery soul with rare flashes of irritation and frustration. On that occasion too, her previous caller had been the same carer who probably chastised Mum last night. Given that there could only have been 15 minutes max between my arrival and her departure (in fact, I arrived half way through her 30 minutes alloted visiting time), and given too, that Mum is no longer able to sprint from the conservatory and into bed - there is no doubt, in my mind, that Mum was already lying on the soiled sheets when the carer arrived. Yet the note in the diary read: <em>"....sitting in the conservatory watching television. Not in a good mood. All well".</em><br /><br />What can I do about it? Not a lot. There is a desperate shortage of caring carers and we are still struggling to get Direct Payments up and running. (Three "recruits" in our tentative care plan have had to withdraw before we even got started. All for very good reason, but it means our start-up has had to be postponed.)<br /><br />The point is, that Mum is still able to communicate, even if it's a little unconventional or it's by non-verbal means. And she was probably right. Not about being shoved in a cupboard, but about being ticked off. Just because she has dementia, doesn't mean that she doesn't have anything worthwhile to say, or that she can't say it. Or that I shouldn't believe her.<br /><br />A few years ago, when my father was diagnosed with a brain tumour, his speech was completely to pot. It was almost impossible to unravel the sense, but he was desperate to say something. And he cried. My father never cried. Like any family, we had been through the lot - blissfully happy times, sad and tortured times - and my father was always moved and affected - but he never cried. Until that night in the hospital.<br /><br />Eventually, by repeating words and asking him to nod when I got it right, I gleaned that the night staff were uncaring and completely different from the day nurses. When my father asked for help to get to the bathroom, the night staff ignored him only to criticise and ridicule when he soiled the bed. It was the loss of dignity for himself and for the other patients in the ward, that made him cry. When I filed a complaint the next day, I was told that it was not the first and that action had already been taken.<br /><br /><em>So here's the thing: even if we don't understand, even if it doesn't seem possible or even probable, maybe sometimes they are telling it like it is. We just need to find another way to listen.</em>Tillyhttp://www.blogger.com/profile/13009061934588684109noreply@blogger.com3tag:blogger.com,1999:blog-16544083.post-47789524612797588482008-04-22T11:54:00.003+01:002008-04-22T12:15:40.894+01:00Perth & Kinross Leisure welcomes carersHeads up to anyone in P & K who is a carer and who longs to get back to the gym or join in with "normal" life again - and who simply can't afford the membership fees anymore...<br /><br />Last year, I spoke to our local leisure centre, about extending discounted memberships to non-qualifying carers like me. Because I work (sort of), I don't qualify for a Carer's Allowance. And because it would be inappropriate to drag Mum to the gym with me on a two for one deal, I also don't qualify. But I'm still a full-time carer and I desperately need some stress-busting time. I bike a lot, usually round to Mum's, because that's free and a) it's good for my bottom and b) I can't answer the phone on my bike. But living in Scotland, there are the odd days, of hail, sleat, wind and rain - and that's just in the summer. Nay, I jest - but sometimes the wind defeats me and it makes biking a Bad Thing. Which is when it would be lovely to nip down to the gym.<br /><br />Anyway in October, the Leisure Centre reviewed and said no, but they promised to put it on the agenda for the AGM in April. Last month I wrote a gentle reminder - and true to their word, I received an e-mail yesterday to say that discounted memberships for carers had been approved and would be available from 1 July 2008. The criteria by which you apply for membership have yet to be agreed so it's not done and dusted yet but it's good news and I hope others too will be able to take advantage. <br /><br />So <em>faites attention mes enfants:</em> look out for press, posters in June - scrunch and crunch, pecs, abs and buns to the ready!Tillyhttp://www.blogger.com/profile/13009061934588684109noreply@blogger.com4tag:blogger.com,1999:blog-16544083.post-60973822134263455702008-04-17T14:34:00.002+01:002008-04-22T11:52:54.509+01:00Have hair do, can boogieMum was in fine mood today, so I thought we might try an excursion to the hairdresser, something that I had abandoned about a year ago because of Mum's growing dislike of washing her hair or showering. In fact, the twice weekly shower is really the only time that she swears at me. The shower is an event dreaded by both of us, I think. Mum is accusatory: "I never thought a daughter of mine would ever treat me like this". I plead, wheedle and soothe, talk gibberish to distract, but nothing really works. Thankfully, once she is sitting on the bed, wrapped in warm towels, her truculence subsides and gives way to tiredness. And so I undertook the monthly haircut (!) honing my skills as I chopped. I learned to become bolder. Trimming minute amounts just made Mum's hair look like it had been chewed. But today, I thought we might venture, so venture we did.<br /><br />What a success!! It took a while to mountaineer the steps, but we arrived in reasonable time and the hair salon had been forewarned. H, the owner, was in attendance and couldn't have been kinder. When Mum realised that her hair was being washed, her head kept bobbing up from the bowl like a chicken trying to peck corn. Water sprayed and soaked the floor but H was unperturbed, sweeping Mum toward a chair. "Your daughter's keeping an eye on us", he flirted. Perfect! That got Mum giggly and girly, and she patted H's bottom. "You'll be out dancing tonight," continued H. He laughed with her, and took great care to cut and dry her hair in a style that was "<em>gamine"</em> rather than the old lady rollers - which Mum always hated with a vengeance. She trilled and batted her eyes, and loved every minute of it. H said I was to call anytime, and he would look after her. And he meant it.<br /><br />Isn't that brilliant? Back home, Mum gyrated to Trilok Gurtu. I'm inspired. Look in local phone book. B for belly-dancers. Wonder if we could book a private class at home?Tillyhttp://www.blogger.com/profile/13009061934588684109noreply@blogger.com2tag:blogger.com,1999:blog-16544083.post-53427114288794516182008-04-16T11:36:00.005+01:002008-04-16T12:12:49.118+01:00Cloq watchingThis isn't anything to do with dementia, but it has a spurious link through clock watching ...Just in case anyone else, like me, is waiting for bags to be delivered by Britiah Airways, I thought I would include Uniqlo's unique clock. (Click on the title to this post and you'll get there.) It's a strangely fascinating Jacques Tati style mix of ballet to Pearl & Dean music, comingled with screen wipes and web time. Love it - it's a "totally cool dude" moment in a Finding Nemo sort of way. I used to travel to Japan regularly and have a great affection for many things in that country, though never could quite get the hang of squid ice-cream.<br /><br />Living in the provinces, I'm quite accustomed to BA's regular loss of luggage. At the last tally, it was approximately 8 out of 10 trips. Even my children are used to it. Just occasionally, BA score a double, as they did this time, and manage to lose my bags on both outbound and return legs! Irritatingly, when you tracker-check your luggage, BA's website shows them as 'delivered'. What they actually mean is, that the bags (allegedly) have reached the airport to which you were ticketed. Sorry BA, it doesn't compute. What delivered actually means for the rest of us, is that we have our bags in our sticky mits. No baby, no delivery.<br /><br />But what has changed, is that even when your bags have been 'delivered' to the city where you land, it takes 2 days (and counting) to actually bring them to your door/room. BA says it's the courier. Hard to know what the courier says because they don't pick up the phone. (I guess they're too busy delivering.)<br /><br />Still, I count myself a lot luckier than the hapless Hungarian who was due to catch a BA flight from Vancouver a couple of days ago. The flight was cancelled and the passengers herded off to a hotel for the night to be bus-ed down to Seattle the next day. The Seattle flight was delayed so we all missed onward connections. Except the Hungarian. He didn't have a visa for the States because he had never intended to go there. As far as I know he's still waiting at the Canadian/US border.<br /><br />Hope he gets 'delivered' safely. Enjoy the cloq!Tillyhttp://www.blogger.com/profile/13009061934588684109noreply@blogger.com0tag:blogger.com,1999:blog-16544083.post-33447045034959005122008-04-13T20:14:00.008+01:002008-04-13T22:39:19.808+01:00Sleepless in SeattleSeattle has been home for the last week, trying to focus on the conference and to mind the minders while I have been away.<br /><br />This morning, I woke up to a txt from H2 asking for the home number of Mum's Monday-Friday private carer. Urgently. This being Sunday, it all seemed a little odd. But it's the same old issue. The Tena pants needed changing and I had forgotten that the respite carer had to leave a day earlier than anticipated. I had catered for the Morning Poo but forgotten completely about the Evening Poo. Pumping Mum full of good healthy porridge oats definitely has its downside....! But like everything, there is a funny side to it all. The changing of the Tena Pants has become something akin to the Changing of the Guard. Our day, Mum's and mine, is marked off by the hours at which the change is necessary. Too early - and there is little point. Too late, and in the morning, it could mean a whole bed strip and change. Only one of our regular carers can manage The Change, which means that I have to time my day and that of the children's by the times at which I must get round to Mum.<br /><br />Paddy, our lovely old dog, had an endearing habit of looking completely surprised, when he farted. It happened increasingly as he got older. Eyes wide and full of indignation, he had no idea that he was the culprit. Funnily, Mum is the same. When we get to The Changing of the Pant, she points to the offender and demands to know, who is the perpetrator? Who had the audacity to put That There? I haven't the heart to explain and besides, an explanation would be pointless. So I also pretend to be shocked, and demur. "I have no idea, Mum" I say. "But you can be sure, that I'll ask them not to do it again".<br /><br />A couple of years ago, I had thought that double incontinence would be my tipping point. This would be the time, that I would no longer be able to cope with the extra demands of personal care and laundry. But thanks to porridge, I can almost set my watch by Mum's digestive cycle - and we are still OK. How will I cope when I can no longer persuade her to get out of bed? Or perhaps, when her weakening leg muscles can no longer support her? Will that be our tipping point? I mention it, only because my fellow carer in New York has reached the point at which residential care for his mother looks like the only option. He is all cared out, sorely in need of rest and recuperation himself, and his Mum, unwittingly, is "playing up" which seems to be another all to0 common facet of dementia.<br /><br />I can't work it out, but it's real enough. Mum uses emotional blackmail much less now - though we still have the odd day of childlike, attention-grabbing behaviour. But La Grande Pancake is peverse beyond measure! She longs to help - it's her self-affirmation that she can still manage - but you could stake money, that whatever you ask her to do, she will do the complete opposite. You almost wonder whether this is a weird trick of the brain that requires 'Alice Through the Looking Glass' speak: ie. you say the exact opposite of what you mean in a sort of verbal hamburger double flip.<br /><br />I hope our NY carer gets the home that his mother (and he) deserve so that they can rediscover a relationship that has fun/love/affection as its base rather than the daily grind and worry of care.<br /><br />Meanwhile, I discovered this week that Jimmy Hendrix was a Seattle son. He's a bit before my time, but I didn't know that. And I had no idea that aside from grunge, Seattle's roots are steeped in musical history. I like the city - it retains something of its pioneer feel and I love its diversity. Odd, though, that the skyline, at least near the waterfront, and the sprawl of the city immediately behind, is not peppered with church spires as in many European towns.<br /><br /><div align="center"><em>Fear not to entertain strangers, for in so doing, some may have entertained angels unaware</em></div>Tillyhttp://www.blogger.com/profile/13009061934588684109noreply@blogger.com2tag:blogger.com,1999:blog-16544083.post-55020427666441442792008-01-14T15:09:00.000+00:002008-01-14T15:53:21.670+00:00Barking mad....Finding things that will tempt Mum's appetite is one of the challenges that confront us daily. It seems that there is no middle way with dementia - either people over-eat, or eat nothing at all. One day, Mum's on the jelly and custard kick, the next, she'll have avocado and cream cheese sandwiches and all the rest is "cat-sick"! We just go with the flow as long as there is something porridgey with fruit for breakfast to keep digestion more or less on track! And to hide tablets that are spat out otherwise. Yes, I know you're not supposed to, but you try it. (Incidentally, if anyone else struggles with tablet prompt vs. tablet take - here's a handy hint that might just help. Try getting a box of multi coloured TicTacs and doing one for you (the horsepill), one for me (Tic Tac) and that sometimes works).<br /><br /><br /><br />Back to the catsick. So it's hard to find alternatives for Mum in small portions. My homemade stews are deemed to be in the catsick category. So Tesco online helps a lot when I'm really rushed and Mum's stocks are low. And I often look at the Finest range, hoping to find something that might tempt her. Chicken in white sauce sounded good, so I bought that. The box looked pretty good too with a nice picture on the front. Until we looked at it closer and saw the paw print.<br /><br />"I can't believe you were going to give your mother dog food," said Mary. Isn't that what all trans-atlantic rowers eat?!<br /><br />Saving money isn't easy either for a spendthrift like me. But I'm now very good at T. K. Maxx shopping, using any combination of bicarb. of soda and vinegar for cleaning, and vaseline for face/hand/foot creams (what a lovely image this conjures up!) - and here's the latest that I tried this morning. Mushy avocado, 1 egg yolk and a couple of tbspns of olive oil for hair shininess. Slap it on for 20 mins, then shampoo off. Works like a dream! My US friends laugh and say I'm the Martha Stewart of homeliness. But MS ironed leaves for table decorations. Now that's a step too far, even for me. And of course, there was the tiniest issue of insider trading...Tillyhttp://www.blogger.com/profile/13009061934588684109noreply@blogger.com2tag:blogger.com,1999:blog-16544083.post-89275816610604470522008-01-04T11:10:00.000+00:002008-01-07T22:54:56.826+00:00Pride goeth before a fallSo much for my cosy contemplation that the Christmas spirit was alive and well in our house, thank you very much!<br /><br />Over Christmas, "professional" care is more hit and miss than usual. Mostly, it's the minders and checkers who are on duty. Check there's a body, check it's breathing. So the yo-yoing between our house and Mum's is a little more manic than usual. A lot depends on her willingness to get dressed and on the getting in and out of cars. The hokey-kokey in-out of legs for cars, is hard going. On the days that Mum can't cope, it means preparing and cooking two lunches and two suppers served in two places at the same time.<br /><br />Apart from forgetting to defrost the turkey, Christmas Day wasn't too bad and the boys. bless their cotton socks, remembered to write their thank you lists. By Boxing Day and her birthday, Mum didn't want to get up, not even for the changing of the TPs - so on a high risk strategy, back I came to cook the meal before returning to Mum's. Everything was just about perfick, until LGP insisted on helping by pouring boiling water over the Tarte Tatin. H2, who unusually likes food that is edible and who had had a morning of mending stuff that had been fiddled with or moved, erupted. Poor LGP went to her semi-unpacked bedroom and wept.<br /><br />The atmosphere was as thick as Christmas pudding. Back we went to have another go at wheedling Grandma out of bed to get cleaned up. Thanks to the boys, we were back on track. Mum was articulated in and out of the car, and even coaxed into eating with the SBs while I tried to pacify LGP. But LGP was having none of it. Sitting in amongst the boxes, she was desperate. She had to leave. Her son hated her. The same son who has just spent the last year and just about every penny we own, demolishing and rebuilding our house to create enough space for her apartment. LGP came round eventually - but it was hard going to maintain the party spirit.<br /><br />The sequel, is that H2, full of remorse, then tried to give LGP something to do in the kitchen. Now we have two broken cupboard doors, including the tumble dryer door and a blocked sink! In a curious twist, it made me think of West Palm Beach. I only visited once a few years ago, but in the space of just a few hours, I met three couples looking for little old ladies who had strayed. What a fantastic opportunity for walkers, fix-its and GPS tiaras....Tillyhttp://www.blogger.com/profile/13009061934588684109noreply@blogger.com1tag:blogger.com,1999:blog-16544083.post-24773010743309042322007-12-29T10:12:00.000+00:002007-12-29T16:36:26.736+00:00"The Star"This is a prose poem by one of the most talented and lyrical poets writing in Scotland today. Whenever people ask me, "Wouldn't "Mum" be better off in a home?" - I think of this and it explains so much of what I feel. We are the star-keepers. We know about all the stars that Mum found, and we see them still, even if the night is dark and her eyes grow dim.<br /><br /><em>There was once a man called Kay who discovered a star. He found it in his telescope and it was golden, the colour of a Sri Lankan topaz. He watched it and watched it, for he knew that this was his star, that this was the first time astronomers and scientists had ever known of its existence. And the star was called after him - Kay's Star.</em><br /><br /><em>The man grew older. For a time magazines remembered the anniversary of his discovery, and it was as if his star came back into orbit. But then, one by one, they began to forget. New things were discovered: better ways of playing music, quicker ways of cooking food, easier ways ways of making money. Kay's Star grew less bright; it flickered on the edge of the sky and began to grow faint and grey.</em><br /><br /><em>The man could not care for himself any more. He was put into an old people's home where nurses said, "Could you lift your hands, Mr Kay?" and, "Now, we'll soon have you into your bath, won't we?" Every night in the ward, he looked out of the window, for his bed was nearest it, at the stars that crusted the huge heavens. And his eyes wandered across the blue-black, searching always for the star which he had found and which was now lost.</em><br /><br /><em>THE STAR from 'Columba' by Kenneth Steven, reprinted here with grateful thanks to the author. </em><br /><br />Other works by Kenneth Steven include Iona, Salt & Light, Wild Horses and The Raven's Tale. Mr Steven will take you to old haunts and new, and some of the most beautiful and mysterious of Scotland's landscapes. They will live in your heart and in your spirit, even if you are not free to travel or cannot journey there.Tillyhttp://www.blogger.com/profile/13009061934588684109noreply@blogger.com0tag:blogger.com,1999:blog-16544083.post-87107118612202572782007-12-24T12:36:00.000+00:002007-12-24T12:52:23.119+00:00Happy Christmas to all carers!Before things get too hectic at our house - I just wanted to wish every carer who is out there, a very Happy, stress-free Christmas.<br /><br />Last night, I felt tired, desperately needing that clone to do all the things that I need to do! - and then I realised that the true spirit of Christmas is here, in this house, every day of our lives. We (the carers) are giving love and care 24/7, 365 days of the year. I know that even when I feel dead on my feet (!), my life is enriched by it. (Yes, I know, and the bank balance is impoverished!!!) So in that spirit, a HUGE thank you to all the people who have helped me, for every kindness that I have received this year to make my life a little easier. To those of you whom I have met through blogging - you all make such a difference because I know that I'm not alone - and of all people, you understand.<br /><br />So here's the thing: we are all incredibly special people. I know that sounds horribly schmalzy, but I really believe it.<br /><br />Happy Christmas everyone, God Bless and every happiness to you all in 2008.<br /><br />TxTillyhttp://www.blogger.com/profile/13009061934588684109noreply@blogger.com3tag:blogger.com,1999:blog-16544083.post-19211125127625763102007-12-22T21:15:00.000+00:002007-12-22T22:08:26.030+00:00Who is there to care for the carers? DNC for oneThis thing about having no-one to pick up our own pieces is vexing. There is, however, one service which is little known in our parts (Perth & Kinross) and which is well worth knowing, especially if you are caring for someone from dementia. <br /><br />Ever heard of Dementia Night Care? Originally started as a project funded by the Scottish Executive, DNC offers night respite care in situ for carers whose nights are sleep-deprived. Several pilot projects started, but only two remain as far as I know. P & K is one, not sure about the other. The P & K team is run by three Honorary Sunbeams who fervently believe that there is little point in offering care unless they can shadow exactly, the care that we as carers offer. They like to meet you and the person you care for, so that they can learn as much as possible to make as smooth a transition as possible. They want you (the carer) to have a real break, free from worry, free from guilt. They will do whatever it takes - and nothing deters them. <br /><br />The occasional bad-tempered outburst that is so typical of dementia is dealt with sympathetically and gently - it is nothing to be scared of, nor is it any reason to chastise. To them, it means that they must simply try a little harder to put the person in their care at ease. For us, a huge stumbling block has been personal care - from washing, brushing teeth, to dressing and the complete taboo (for my mother) the changing of the Tena Pant. (The Changing of the TPs has taken on the same ceremonial proportions as the changing of the guard. ) Whatever else she has forgotten, Mum knows that it is not normal to have someone else in the bathroom with you - much less, to allow your pants to be pulled down, removed and cleaned up in the process. "Outsiders" risk a sharp slap for their trouble - so the bottom line (!) is, that no-one tries any more. <br /><br />Except for DNC. They think it is perfectly normal for Mum to object. "I would" says I. I has a smile that would light up the darkest of rooms. She doesn't need to work, and she left her last job at the local care home because no-one had the time to connect with the "inmates" any more. No holding of hands, no singing of hymns or old songs, no talking the jumbly jivy talk of the demented. No sharing of moments.<br /><br />I does plenty of sharing. I saw her today to take a small gift of thanks for Christmas. In return, I got two huge parcels for Mum, including one for her birthday on Boxing Day. I never told I it was Mum's birthday! But somehow she knew....This kindness from an almost-stranger is all the more heart-rending when there is nothing from her son or her brother. Nothing for Christmas, nothing for her birthday.<br /><br />If you think DNC could help you, ask about it from Home Care. Or if you email me, I'll make sure that you get the telephone number. Don't worry about cost: the service is free.<br /><br />You might only get one night in three weeks, but if you are drowning in tiredness and stress, it might be just the lifeline you need.Tillyhttp://www.blogger.com/profile/13009061934588684109noreply@blogger.com0tag:blogger.com,1999:blog-16544083.post-13115124887192356772007-12-21T09:00:00.000+00:002007-12-21T09:40:27.549+00:00Shared Care's Poet in Residence: "Give us a Break" a poem written for carers<strong>Elspeth Murray</strong> is poet in residence for the registered charity "Shared Care Scotland". SCS is determined to drive the provision for respite care in Scotland. Not respite care by numbers. Not respite care because we (the carers) have reached breaking point. But fun respite care - to be shared with your loved one. Or to be taken alone, or with your partner and children to escape and come up for air, knowing that the care (residential & in situ) provided for the person you care for, is just for them, and is tailored to their needs and preferences.<br /><br /><br /><strong>There is a universe of difference between caring and just "minding".</strong><br /><br /><br /><div align="center"><strong>Give Us A Break</strong><br /></div><br /><div align="center"><em>Who cares for the carers? Who gives us a break?</em></div><br /><div align="center"><em>Let the movers move and the shakers shake</em></div><br /><div align="center"><em>Till the system works for everyone's sake.</em></div><br /><div align="center"><em></em></div><p></p><p><br /></p><div align="center"><em>He’s always ‘my darling’, make no mistake,</em></div><br /><div align="center"><em>But I bite my nails and tear out my hair,</em></div><br /><div align="center"><em>Don't wait for the break-down – give me a break.</em></div><br /><div align="center"><em></em></div><p></p><p><br /></p><div align="center"><em>Five hundred thousand in Scotland awake</em></div><br /><div align="center"><em>knowing they’re the ones who have to be there</em></div><br /><div align="center"><em>to hold up the ceiling, for everyone's sake – </em></div><br /><div align="center"><em></em></div><p></p><p><br /></p><div align="center"><em>Sharing the load brings change in its wake. </em></div><br /><div align="center"><em>Since humans are human and sainthood is rare,</em></div><br /><div align="center"><em>Accept my reality – give us a break.</em></div><br /><div align="center"><em></em></div><p></p><p><br /></p><div align="center"><em>Respond to the pleas that all of us make</em></div><br /><div align="center"><em>With phone calls, appointments, petitions and prayer,</em></div><br /><div align="center"><em>Then stick to your promise for everyone's sake.</em></div><br /><div align="center"><em></em></div><p></p><p><br /></p><div align="center"><em>We’re asking for funding that's fair and not fake,</em></div><br /><div align="center"><em>For time to recover, to rest and repair,</em></div><br /><div align="center"><em>We’re unpaid carers – give us a break,</em></div><br /><div align="center"><em>And do the right thing for everyone's sake.</em></div><br /><div align="center"><em><br /></em>© 2007 Elspeth Murray<br /></div><br />For Shared Care Scotland’s conference <em>Breaking Through</em> April 26th 2007 . I spoke to EM at Shared Care's Roadshow conference in Perth in October and she kindly gave her permission to reprint her poems for carers.<br /><br /><br /><strong>Carers Brickbats</strong><br /><br />Reading Mr Man's wife's blog got me thinking. I also have family who could, but who don't. If they can't look after Mum for a day, they could take the kids out for a break. But they don't.<br /><br />Over the last year or so, I have given a couple of talks about caring - and in thinking about my own family, I realised that inheritances are to be shared equally but responsibilities are not. And as dementia progresses and your mind disintegrates, so does the network of friends and family around you who variously can't help or won't help. So we are left to rely on state provided care. I have one or two fantastic helpers, who feel bad when they can't help me with Mum because she won't let them. So they look around for something to do, anything, that will lighten my load. They're brilliant and I love them to bits. But there are also some horrors out there.<br /><br />Without being libellous, but in the spirit of having a bit of fun, I would like to invite any carers out there, to post their disaster stories about carers who have come in to care and who are worse than useless!! Who are the real Slack Alices?!<br /><br /><strong>Carers' Bouquets</strong><br /><br />And just to balance the books, I'll do another post in a week or so to talk about the people who do make a difference. I would love to hear about your Honorary Sunbeams - people who are always there to do what they can to make your life easier. Our CPN, Gill B is an HS. So too is the GP, Dr. E. Mary and Evelyn (whom I pay privately out of the last vestiges of my earnings!) are soulmates and so is young Jayne from Crossroads.Tillyhttp://www.blogger.com/profile/13009061934588684109noreply@blogger.com5tag:blogger.com,1999:blog-16544083.post-30950823611395126432007-12-20T18:29:00.001+00:002007-12-20T18:59:05.822+00:00Double Dutch?Why is it the Dutch who are "double" if something is incomprehensible? Why not Double Faroese or Double Tagalog?<br /><br />One of the things that the LA had been concerned about in their assessment of Mum's assessment (!) had been the lock-down regime..! I say "lock-down" because that's how they make you feel, when they bring up the issue of Locking the Door. You know why you do it. The door is locked on a cold winter's day because the prospect of Mum trying to find our house in temperatures of sub-zero, to bring me a tea-bag without a coat, gloves, or proper shoes on, is ever-so-slightly a worse risk on the risk evaluation scale. "But it's against our policy to lock people in" says the LA. "We don't like it".<br /><br />Neither do I. <strong><em>But if it's OK for Mum's door to be locked after a security check at night - when those with dementia cannot tell the difference between day and night - what's the difference?</em></strong> Double Dutch indeed. Or is it double standards? I don't think so - I think it's just a lack of commonsense. Rules is rules - even when they don't make sense.<br /><br />It doesn't distress Mum. She isn't tugging at the door, desperate to get out. All the switches are turned off and Mum never attempts to cook anything. Bless her cotton socks, she hated cooking even when she could wield a wooden spoon. My brother and I were raised on a 365, 24/7 diet of salad. Meringue crumbled in Angel Delight was an exotic concotion she came up with AFTER attending a cookery course! (Oh Marco Pierre White, I have been lead down paths that you have barely dreamed of, that are so far distant from the Cusine Ordnance Survey.....!) She doesn't have a cat, so never puts ice-cream down in a bowl on the floor (See Y-O-Y for that oblique reference!)<br /><br />And just for the record, I also took a photo of Mum (without her permission), so that I could give the police a home-made A4 laminated Identikit of Mum. That way, if she does wander, we can take her home immediately rather than process her via the local outpatients department after treatment for hypo-thermia...<br /><br />Stuff that in your PC pipe and smoke it...!Tillyhttp://www.blogger.com/profile/13009061934588684109noreply@blogger.com0tag:blogger.com,1999:blog-16544083.post-87080959207111395032007-12-17T17:28:00.000+00:002007-12-20T19:02:11.097+00:00The Christmas Panto & the front lobeLGP came with us to the Christmas panto, with the children, two of their friends and another grandma who is always very good to all the children. The panto is a stretch too far for Mum who is disturbed by the hoots, whistles and bells and general carry-on: always a stickler for good behaviour, last time, she remonstrated with our two for standing up and shouting much to their great embarassment. So now we give it a miss.<br /><br />The panto was great fun and even LGP laughed at the outrageous Dame's doobul-entonders. And she also laughed at the Down's Syndrome couple sitting in front of us. Were they brother and sister? Husband and wife? Either way, they were a funny pair and she was riveted by them.<br /><br />What to do, when the dottiness of dementia tips over into something that is quite repugnant, quite anti-social to the extent that it causes offence? That's a knotty dotty dilemma. LGP was never the most PC of people anyway, but it's hard to imagine that even she would have pointed and giggled before. I'm afraid, I just ignored it and fixed my eyes on something else in the hope that she would forget and tire of this behind-hand whispering and pointing. In truth, I hadn't a clue what I should do.<br /><br />Hadn't thought of that one before.<br /><br />Oh yes, the lobal link. While in Brussels, a friend of mine said that all your ability to behave properly and understand social dos and don'ts is contained in the frontal lobe of the brain. I didn't know that. Doesn't make much difference, if you can't change it, but there it is!Tillyhttp://www.blogger.com/profile/13009061934588684109noreply@blogger.com0tag:blogger.com,1999:blog-16544083.post-83065299586362956222007-12-16T19:09:00.000+00:002007-12-16T19:21:17.927+00:00Reader, we got to the Carol Concert x 2!Success!!!!! We managed to attend the carol service with a full complement of grandmothers! Mum wasn't too tired, so I called the cathedral to see if there was a route in for wheelchairs. Missed the turning first time round, but we found a space only yards away from the door at the back. Mum was in a reasonably co-operative mood, so I managed to haul her out of the car without too much protest, plonk her in the chair and whizz into the cathedral just in time.<br /><br />When the ocarinas started to play, Mum clapped her hand to her mouth and said: "What on earth's that? It sounds awful!" The children who were sitting near us, started to giggle. <em>Of course </em>young ocarina players sound awful, it's just that you don't say it! I then wondered whether a lifetime in choral societies would encourage Mum to singalong to every carol including the solos - but it didn't and it was great to see her singing the carols she did know, with a happy beam on her face. She loved being there, with the holly and the candles and all the children.<br /><br />LGP was sitting with H2 on the other side - they arrived even later than we did. LGP complained that she couldn't see anything. But she was right. It's a curious thing in that cathedral, that wherever you sit, you are behind a pillar. Was it built by worthy farmers who knew that they might fall asleep in the pews and didn't want to offend the minister that his sermon was just a tad too earnest?!Tillyhttp://www.blogger.com/profile/13009061934588684109noreply@blogger.com0tag:blogger.com,1999:blog-16544083.post-34383620528427332742007-12-11T20:53:00.000+00:002007-12-11T21:28:03.615+00:00The Kasbah & the Birthday PartyEldest SB finally got to invite 5 friends over for a sleepover!!! It's just taken us a year, but we finally made it. We put rugs down in the soon-to-be decorated room, made sure that all the leads and wires were dead (fried children - not a good idea), put in mattresses and left them to it!<br /><br />Everyone piled in to two cars to go and see <em>The Golden Compass - </em>I have to say that I enjoyed it, and especially liked Lyra and Billy. The boys finally got to bed at about 10.30 pm, and swore faithfully to brush their teeth. On checking the socks on teeth quotient the next morning, I think we got about 2/6. Is that good? One child slept in the clothes that he arrived and left in. I'm not altogether sure that he even unzipped his jacket.<br /><br />Despite the sleet of the night before, we then set off after a hearty breakfast of fried eggs, black pudding, sausages and bacon, to go fishing! Nothing caught, apart from two gloves and a hat. Then a hilarious (and perilous) ride in the old Land Rover through gorse bushes and down rocky crevices. Eeeks! But the boys loved it. And so did I.<br /><br /><br /><br />Meanwhile B came down to look after Mum, but he was already in a snipy mood when I arrived to help her to bed. I had texted to see what his estimated arrival time was but thought I should come round, since I didn't hear back. Mum, who had been so happy to see him, was in no doubt that she had done something "wrong" as he chastised her for calling him Daddy. Honestly: who cares? I am mother, sister, daughter, servant, grandmother for all I know - but it doesn't matter. The next time I saw her, she was unsettled and sitting in the dark with her trousers off, refusing to go to bed. It took nearly two hours to coax her into drinking anything or getting to bed. The carpets were dirty, the sink unwashed. B had even had 6 hours to himself since X-roads was in looking after Mum as well, so he hadn't spent that much time with her. Certainly not taken her out. Thanks for stocking up the fridge? None. And I thank him for giving me two days in a year with my son? It makes you wonder. Will I be as unloved by my sons as Mum is by hers? Or for that matter, poor old LGP is by hers?<br /><br /><br /><br />LGP wanders around the house looking lost. She cannot make a meal for herself, can barely make a cup of tea. She eats a piece of bread for breakfast, since toasting it is beyond her, then goes out for the paper and buys bread to eat when she gets home, having forgotten the first lot. In two months.she has become a full-time watcher. Just standing and watching what you are doing, with arms folded. It is a shadowy presence in the house that is a little unnerving until you get used to it. The boys don't want to be left with her, and are relieved when she goes to bed. They even asked if they could visit Mum with me, as they haven't seen her for ages. However batty Mum is, her livelong love of children and of her own especially, communicates itself if little else does.<br /><br /><br /><br />Tomorrow is the carol service for the school. H2 doesn't want to take his mother. He is stifled by her watching presence, her slowness and (now) dull-wittedness. It's all very sad. She was a vibrant, intelligent, elegant woman - if selfish. Now all that is left is the last vestiges of elegance and a lot of selfishness. I have held off booking Pizza Express (where we would normally feed the SBs before attending the service) because I feel we should take LGP. The trouble is, she isn't really interested in the boys at all. I would like to take Mum - the boys would like her to come and I think with the new wheelchair we could manage, but H2 will spoil for a fight if I suggest it.<br /><br /><br /><br />No room at the Inn. Or anywhere else for that matter, if you're one of the unwashed Batty People.<br /><br /><br /><br />I heard on the radio yesterday, that Sheila Fogarty was interviewing someone about Direct Payments. SF asked if you could spend it on anything you liked, that helped. "Even a holiday" she queried. I would have called in, except like most of us, I had 101 things to do. But I hope to have time to write. DP, I'm sure, would be a blessing to many. But it doesn't resolve the problems of someone who needs full time care and for whom the money just isn't available.<br /><br />Then it starts to look like: "Not my problem."Tillyhttp://www.blogger.com/profile/13009061934588684109noreply@blogger.com0tag:blogger.com,1999:blog-16544083.post-11284399618073389662007-12-07T16:43:00.000+00:002007-12-07T16:47:24.914+00:00And another thing! Incontinence pantsDoes anyone have any sensible answer to why incontinence pants (not pads) cannot be had on prescription? I have asked the Incontinence Service but no-one has yet bothered to answer several emails later. Mum flushes pads down the loo - so we had to resort to pants unless we were going to block our village drains completely. But at 61p a shot, it all adds up....<br /><br />If anyone else is in the same pants! - try <a href="http://www.youreable.com/">www.youreable.com</a>. It's about the cheapest I've found.Tillyhttp://www.blogger.com/profile/13009061934588684109noreply@blogger.com0tag:blogger.com,1999:blog-16544083.post-82982506571696845082007-12-07T15:38:00.000+00:002007-12-07T16:40:39.487+00:00Working, not caring & Direct Payments 2I have just got back from 2 days in Belgium. The flight cost more or less £250 return - not too bad, and hotels, probably another £ 180 ish including breakfast. When I am away, my working day is a lot easier than at home - I start around 8-9 am and finish typically about 10.30 pm after dinner. The idea is to somehow keep a professional hand in, so that when I am "free" (<em>euphemism for when Mum dies</em>), I can "go back to work" (is that hysterical laughter I hear from fellow carers?) about the time that everyone my age is retiring. And like most other carers I've ever met, I have a growing mountain of debt that must be paid off somehow.<br /><br />And this is how it works: in order to work for 2 days, I have to pay for a live-in carer for 2 days and the cost is around £200-300. It's not money that I begrudge at all. Our live-in carer is truly an Honorary Sunbeam - she is lovely and caring and Mum is happy with her. No longer, the dreaded call ("that call" says Mr Man's wife) when I am 1000 miles distant, 4 different time zones away, and in a meeting - "Mum has disappeared: is she with you?" ...Our Honorary Sunbeam copes perfectly and with a smile that is genuine.<br /><br />I will invoice my longstanding and longsuffering colleague for some of my time plus costs. And since costs - the hotel and airfare - are way over the £85?/week stipend I am "allowed" to earn as a carer, I'm disqualified from the £45 ish weekly Carer's Allowance. Since I am far from being up to speed in my field - no time to read the papers I should, or to talk to my network of contacts - I feel I can only charge a discounted per diem rate. So for two days of work, I shall either be out of pocket or perhaps a meagre £30 the richer!<br /><br />Meantime, there has been a reply to my questions about Direct Payments from the Home Care advisory. They remind me that although I must have an approved plan in place, we haven't yet been given the go-ahead for Direct Payments (they are to conduct another review of Mum's care needs! How can you need more than 24/7? Or perhaps we need less?), so therefore I should hold off for a while. That makes sense of a kind. But I was asked to come up with a plan in June. I did and here we are - 6 months later, no further on at all. How difficult is it, for Home Care to decide? I wonder in completely bad taste whether to start a Sweepstake: what will happen sooner - Mum's death or Home Care deciding to help? Galling - when we are all actually its employers!<br /><br />Apparently the tentative £400/week is the biggest award ever proposed for Direct Payments. Maybe the only sensible question to ask Home Care is simply, how to put in 24/7 care on a budget of £400 plus a pension when their contribution is pegged at £12/hour - or 33/34 hours? Have they discovered true gold? Funny money with stretchy properties?!<br /><br />And yes, we have to ask HMRC about the registration of self-employed carers. It isn't so straightforward say Home Care. But it's the responsibility of the carers to register, so ...what? If we can't register, we can't use Direct Payments, even if we get the award?<br /><br />We once got "that call" on about Day 2 of one of our rare family holidays. I was in Tunisia and about to leave for the Sahara with the boys when a Home Care carer (who didn't know mum)phoned me to ask if she was with me! Mum was a lot better than she is now, but even so, I had forewarned the office that I would be away and asked for the same team of carers to visit because I wouldn't be there to help for a week or so. I even sent reminders because I know that scheduling is a pretty tough job to do, and most of us are willing to do what we can to help. Luckily, the manager couldn't be contacted and it was one of the old carers who found Mum and took her back home. Using plain old commonsense, she got it sorted.<br /><br />Since then, we have taken to locking the door. Completely politically incorrect and there are howls of protest from social services. But it doesn't distress Mum and it keeps her safe. The fire risk is nil because she hated cooking even when I was a child. Which is better? To offend political sensibilities - or to ensure that Mum doesn't wander out without coat on a cold and dark winter's night?<br /><br />Who cares more? Home Care who are off-duty shortly after 5 - or those of us who are never off-duty?Tillyhttp://www.blogger.com/profile/13009061934588684109noreply@blogger.com0tag:blogger.com,1999:blog-16544083.post-391916109521483742007-11-30T21:49:00.000+00:002007-11-30T21:53:03.987+00:00Wordploy by the WP<em>The Washington Post</em> has published the winning submissions to its yearly contest, in which readers are asked to supply alternate meanings for common words.<br /><br />And the winners are:<br /><br />1. <strong><em>coffee </em></strong>, n. the person upon whom one coughs.<br />2. <em><strong>flabbergasted</strong> </em>, adj. appalled by discovering how much weight one has gained.<br />3. <em><strong>abdicate </strong></em>, v. to give up all hope of ever having a flat stomach.<br />4. <strong><em>esplanade</em></strong> , v. to attempt an explanation while drunk.<br />5. <strong><em>willy-nilly</em></strong> , adj. impotent.<br />6. <strong><em>negligent</em></strong> , adj. absentmindedly answering the door when wearing only a nightgown.<br />7. <strong><em>lymph </em></strong>, v. to walk with a lisp.<br />8. <strong><em>gargoyle ,</em></strong> n. olive-flavored mouthwash.<br />9. <strong><em>flatulence </em></strong>, n. emergency vehicle that picks up someone who has been run over by a steamroller.<br />10. <strong><em>balderdash </em></strong>, n. a rapidly receding hairline.<br />11. <strong><em>testicle ,</em></strong> n. a humorous question on an exam.<br />12. <strong><em>rectitude </em></strong>, n. the formal, dignified bearing adopted by proctologists.13. pokemon , n. a Rastafarian proctologist.<br />14. <strong><em>oyster ,</em></strong> n. a person who sprinkles his conversation with Yiddishisms.<br />15. <strong><em>Frisbeetarianism </em></strong>, n. the belief that, after death, the soul flies up onto the roof and gets stuck there.<br />16. <strong><em>circumvent </em></strong>, n. an opening in the front of boxer shorts worn by Jewish men.Tillyhttp://www.blogger.com/profile/13009061934588684109noreply@blogger.com0tag:blogger.com,1999:blog-16544083.post-68319552246072673092007-11-30T21:05:00.000+00:002007-11-30T21:30:23.590+00:00Direct Payments...policy at odds with the lawIn December 2006, a Social Care Officer assessed Mum as needing 24 hour support, 7 days a week. The review was prompted by the Community Psychiatric Nurse owing to Mum’s deterioration since her last formal review in 2004 when she was discharged from the local Royal Infirmary.<br /><br />The CPN and Community Care suggested that we look at Direct Payments as a means to help provide the support and care that would enable Mum to stay at home. Her experience with institutionalized care has been traumatic. Everyone involved in her welfare (me, (PoA & Welfare Guardian), CPN, GP, Social Care Officer, OT) agrees that she is best cared for at home and that the attendant risks (eg.fire etc) are minimal/contained.<br /><br />In May-June, a meeting was held to review the DP option and it was decided that we were met the criteria and therefore should apply. Present at the meeting were the CPN, Social Care Officer, P & K Community Care Planning Officer. The DP Co-ordinator/Facilitator was due to attend but couldn't as she was on long term sick leave.<br /><br />I put together a team based on my input and the services of a nurse and carers hired privately. The nurse agreed to cover 4 x 24 hr periods (4 days), with cover provided both by her and by a colleague, similarly qualified. The remainder of the time would be covered by me and by carers who were on PAYE rolls elsewhere but who had sufficient free time to take up self-employment.<br /><br />In August, I emailed Home Care for a progress report and for advice on the next step. It emerged that the Social Worker had been transferred to a new department, the head of Home Care local office was off on extended sick leave, ditto the Direct Payments co-ordinator. No-one was in charge and Mum's case had not been reassigned. After two months, it was taken up again by a new Social Case Officer and a stand-in replaced the DP Co-ordinator.<br /><br />In November, the Community Psychiatric Nurse asked for an update but heard nothing. However, Home Care did indicate that perhaps they would reassess need. The CPN’s view is that there is little point since the care is unlikely to be less or different than it was before. <br /><br />The care required is supervised companion care for someone who is mentally unable to live life normally, taking normal decisions and actions. Mum is not bedridden, though she walks with difficulty, and her medical care is minimal (administration of 3-4 tablets a day). She needs help with dressing, washing, toileting, eating, drinking, going to bed at a normal time, being as active as possible, being taken out/socializing, and being encourage to retain communication skills.<br /><br />Direct Payments provides an advisory service to assist carers to set up and administer the scheme. While they are helpful, LA policy seems to be at odds with the law. One of the big issues is whether to employ carers or whether to enlist them as self-employed personal care assistants. That requires each person to be registered with HMRC as self-employed and accordingly pay NI2 contributions. HMRC’s view (and they are becoming v picky about DP employment) is that <em>“The case law tests normally indicate that a care worker who looks after a client in the client’s own home is likely to be an employee”.</em> Sterner still - they warn that it is for the Inland Revenue to determine who is and isn't a self-employed carer - not the client, nor the carer.<br /><br />DP says that there is no problem recruiting people to care for Mum and registering them as self-employed. They advised putting a card in the local supermarket as the best way to recruit carers since there is a need to have a team composed of about 6 carers to cover for sick-leave. According to DP rules, each must be registered as self-employed and disclosure-checked. Understandable. Laudable, even. But who for a pittance, will register, pay NI and be disclosure-checked for a part-time, maybe job?<br /><br />Having found someone who is able to care for Mum and having trialled 4-5 periods of care that has been paid for privately, we were anxious to keep the same “team” in place. Dementia care is very different from caring for someone who has cancer – the dementia sufferer has no understanding of why strangers are in their house or apparently “caring”, therefore qualifications on paper are not enough.<br /><br />DP says that the maximum award to which we would be entitled is £ 407, based on the average cost of residential care (£600 p/w) minus the average contribution paid by clients. For self-employed carers, they will contribute £12/hour, for employed PAYE carers around £ 11/hour.<br /><br />The rate of pay, that we have negotiated with the nurse is much less per hour for 24 hour care, based on the fact that the sleepover, is mostly an undisturbed night. DP has agreed in principle with the proposed schedule of 4 x 24 hour periods and they are happy with the arrangements for the remaining 3 days of the week. But according to Scotland’s Personal Assistant & Employers' Network (an advisory body reporting to the Scottish Executive), tthe arrangement would contravene minimum pay legislation and working hours because each tranche of cover is over 24 hours. Despite the fact that there are many private carers who provide care in situ (for example for respite care), SPAEN says that to work for 48 hours is against the law and almost certainly disqualifies the carers for working for other clients thereby also disqualifying them from s/employed status.<br /><br />In fact, the hours worked are a matter for negotiation between the provider and recipient. The nurse is not “on duty” 24 hours a day since Mum’s pattern of care is that she sleeps at 8.00 at night, and rarely gets up before 9-10 am. There is a bedroom provided for use by the nurse. But SPAEN reason that were anything to happen, it would be the nurse who is responsible and that we could end up in an employment tribunal.<br /><br /><br />More controversial still, is the view held by Carers UK, the Disabled Living Foundation and the National Centre for Independent Living – all agencies whom carers are encouraged to contact for free advice re DPs – that the local authority is failing in its obligation to provide free personal care and is acting in contravention of the 1990 Single Shared Assessment Act (?) in constructing an award that is arrived at artificially.<br /><br />The agencies argue that if Mum was assessed as needing 24 hour care by the Social Services, we should be awarded a sum that is much more realistic in terms of setting up care in situ. Based on the agencies’ own figures and commercial market rates, that works out at around £ 1200 per week (day care + sleepover rates of around £ 80 a night). No LA will pay such a large sum to an individual – so there seems little point in arguing the toss.<br /><br />But you have to ask: what are carer’s rights?<br /><br />In addition, SAEN say that the public liability policies recommended by Direct Payments don't stand up to muster if the carers aren't properly registered. And if the carers are self-employed, apparently they should be registered with the Care Commission. No mention of this in the Direct Payment guidelines that I've seen. Alternatively, we should secure the services of an agency - but agencies charge £ 14-15 per hour for carers who are far less qualified than the nurses. These are charges that would cripple the £ 400 award and render the whole completely unworkable.<br /><br />Direct Payments has asked for disclosure checks or sight of existing. I have a disclosure check in place, so too do two other carers. Disclosure Scotland says that the self-employed do not have the right to ask for their own disclosure checks. Direct Payments says that an Enhanced Disclosure check suffices – SPAEN says that it is place (not person) specific – therefore each worker needs one.<br /><br />I have no idea what we are entitled to, whether the Local Authority is acting appropriately or not. I have asked for copies for Mum’s assessment and mine, as principal carer, but nothing has been forthcoming. I think I’m entitled to a copy by law but I have no idea.<br /><br />I suspect the Social Care Officer and the DP stand-in has no real idea either how to implement Direct Payments for personal care. Not their fault, since they are all new to the post and new to the case. I’m pretty certain that their remit is to carry out LA policy cost-effectively but we are all ignorant of what is required by law. But I have a legal and filial duty to sort out care – and at this rate, Mum will be dead before we reach first base.<br /><br /><em>Currently, Mum receives 1hr 30 mins of free personal care a day.</em>Tillyhttp://www.blogger.com/profile/13009061934588684109noreply@blogger.com2tag:blogger.com,1999:blog-16544083.post-85608857030971125362007-11-30T20:40:00.000+00:002007-11-30T21:42:46.997+00:00LiveActive....but only if you can tick the boxA week or two ago, I gave a presentation to the Pinky Chickenbutts, a new post created by the LA in their wisdom since they did away with the old post (which did much the same thing) in the "Quality" reforms of 2004. I spoke about the role of carers, like me, who have carer creep. Gradually the business of caring obliterates everything else that you do in the rest of your life. Not poor Mum's fault. If she were cognisant, she would be appalled.<br /><br />So in a Bold Move, and recalling the lovely days when I trotted off to the gym each lunchtime and started the mornings with a 4 mile run or 50 lap swim, I called the local leisure centre to enquire about membership of Spectrum. It's a fabulous project that gives all members complementary access to any number of facilities in the LIve Active scheme. All to do with getting every Pinky Chickenbutt off its butt and strutting its stuff. But as membership is £25 a month, it's a bit beyond the carer's wallet. There is a concessionary rate of £15 a month for those who can haul in their disabled/impaired dependent - or for those living on benefit or income support but nothing for those of us who occasionally earn more than £80 a week and therefore are disqualified from any kind of support.<br /><br />Tom came to the rescue. "Since you don't fit into these categories, let me call HO and see if we can do something else" he said. Dear good kind Tom. The world should be full of Toms. Tom called back - "If you can prove that you are a carer, we can offer you the concession". "Would a doctor's note be OK, or something from the Community Psychiatric Nurse or Community Care?" I asked. "Sounds good to me," said Tom.<br /><br />In euphoric mode, I emailed AlzScot to see if we could put it in our newsletter so that all carers could benefit. And as I am at war with HMRC and Home Care over Direct Payments, it was good to have something to celebrate. Letters came in from the Sunbeams in Community Care and the CPN testifying to my dutifulitudiness as a carer, so armed with these and the application form to join Spectrum, I made my smiley way to the centre.<br /><br />"I'm really sorry" said Tom. "Stella in Marketing says she can't do anything until April next year. They've recognised that you're an Untapped Market Opportunity though and we do want to do something."<br /><br />Poor Tom. Yesterday, I had told him that he had made my day. Today, he felt really bad. But at least I'm a UMO, so that's something isn't it?<br /><br />Back to sit on my pinky chickenbutt then.....Tillyhttp://www.blogger.com/profile/13009061934588684109noreply@blogger.com0