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Funeral Plans + Medical treatment
Oooh, I'm in a terribly morbid mood today. Should I die within the next year or so (ie. I'm intending to update this post every so often, in ten years time then it might not be accurate (it's currently 27th May 2007)) I'd like the following:
Emergency Bag
If I call you from a hospital ask you to bring me some stuff from home, I probably want:
1, Bedclothes + dressing gown + slippers
2, Underwear, socks
3, Tops (loose cotton, short sleeved)
4, Trousers
5, Spare shoes
6, Soap bag (normally packed in my small suitcase/hanging up in the bathroom), hair brush + bands, towel
7, Alarm clock, glasses case, mini-radio, ear plugs, tissues
8, Mobile phone charger, coins for using the payphone/buying snacks
9, A water bottle
10, Prescription medication
11, Jumper
12, Coat - go for a waterproof
13, Books to read, knitting, writing paper, notebook, pencil case (including lots of pens)
I'll love you forever if you clear the fridge of perishable food, wash any dishes in the sink, empty the bins and do any washing in the laundry basket.
Please do not stay in hospital with me overnight. I sleep better when in a room by myself and you will be of much more use to me if you've had a decent night's sleep in a proper bed and appropriate breakfast intake before coming along to see me.
Medical History
Blood Group - O Rh +ve
Current -
allergic seasonal rhinitis - since I was 13ish - I get symptoms on and off from March to September. I've yet to work out exactly what causes my symptoms. A referral to an allergy clinic to determine what it is would be appreciated.
phobia of balloons bursting - developed when I was 18. I do not consent to implosion therapy as a method of treatment. If I am not competent I do not want any treatment for this phobia (though I imagine if I'm not competent, I'm not going to be in a position where I'd be able to benefit from treatment anyway so the point is somewhat moot).
possible irritable bowel syndrome - I have alternating constipation/diarrohea, I occasionally get pains low in my abdomen that are relieved by passing feaces, I suffer with feacal urgency, and with the sensation of not having completely emptied the bowels.
polycystic ovarian syndrome, - I have obesity, hirsutism, acne, irregular periods, the classic string of tiny cysts on my ovaries.
seborrhoeic dermatitis (dandruff), - have had this on and off since I was a child.
keratosis pilaris
Previous -
anaemia - I had a blood test that couldn't rule out alpha thalessemia trait in June 2005. At this time I had very low MVC and MCHC. I had iron-deficiency anaemia in November 2000.
appendicitis - I had an appendectomy in June 1996
psorarsis - I suffered from this as a child/into my early teens.
tonselitis - I suffered with this regularly as a child. Last time I had it was May 2000.
Family history:
My mother's parents - type II diabetes, heart disease, mini strokes, my mother's father died from a massive stroke.
My father's brother × 2 - glaucoma
My father's sister - asthma (poorly controlled & she died from it)
My father's sister - cervical cancer - eventually spread and she died from it.
Eyes
My current prescription (August 2008) is:
Right - SPH -1.75, CYL -1.00, Axis 80
Left - SPH -0.75, CYL -1.75, Axis 70
Pupilliary distance 62 (managed to watch the person write them down)
My previous prescription (June 2007) is:
Right - SPH -1.50, CYL -1.00, Axis 82.5
Left - SPH -1.00, CYL -1.75, Axis 70
Previous prescription (May 2006) is:
Right - SPH -1.50, CYL -1.00, Axis 80
Left - SPH -0.75, CYL -1.50, Axis 70
Immunisation
I was immunised as a baby against diptheria, tetanus & polio. I wasn't given the pertussis immunisation.
I had a measles (yes, measles only) immunisation as a toddler & a booster of the diptheria, tetanus & polio before I started school.
Rubella (yes, rubella only) at 10, BCG at 12, Measles & Rubella (in the nationwide immunise all school pupils campaign of 1994-5) at 13, dipetheria, tetanus & polio booster at 14 (in May 1995) and some sort of Meningitis vaccine (it wasn't Men C) when I started university at 18.
In the event that I'm not competent to make decisions about my own care please provide me with all immunisations that are medically indicated ie. MMR × 2 because I have no immunity to mumps, Heb B, Hep A (if I'm placed in a long term care facility etc), Pneumococcal (if indicated), seasonal 'flu vaccine (if indicated), HPV (when it becomes available) etc etc.
I had chicken pox when I was 15.
Medical Treatment
This is an advance directive as to the type of medical care I would like should I become unable to make medical decisions for myself. Interspersed with those decisions is other information that will be helpful to health care professionals caring for me if I'm competent but feeling scared/unsure of myself etc.
In the event that I am admitted to hospital and remain competent, I do not wish for anyone to be contacted. I will contact the relevant people myself. Providing me with access to a telephone/internet connected computer would be appreciated. If I am injured in such a way that I cannot speak/hear properly, I may ask for help with making the calls. This does not mean that I want someone to make them for me.
In the event that I am admitted to hospital and am not competent to make decisions about my own care, please contact my mother. If you can't contact her, please contact my sister (yes I know she's 17, she's bright, she can deal with this). If you can't contact her contact my father. If you can't contact any of them, please use your own judgement as to the most appropriate care to provide for me.
In order of precedence in terms of determining the type of care I would choose if competent, please use (1) this advance directive, (2) conversations with my mother, (3) conversations with my sister.
If I am not competent to make decisions about my own care, I consent to be tested for HIV and any other communicable or serious disease, whether for my own benefit or for the benefit of health care staff treating me ie. if a health care professional treating me gets a needle stick injury. If I am found to have a disease as a result of testing, then please tell me once I'm competent to make decisions about my care.
If I'm being ressuciated and allowing the presence of visitors won't compromise my care, please allow my family, friends and anyone who happened to be with me at the time of the injury to watch the process if the wish to watch it. No taking of photographs/filming is to be allowed except for images that will be used solely in the education of health care professionals or images my family take of me after my death.
If I am competent, all visitors, with the exception of members of the press in their role as journalists, are to be admitted to see me. If someone appears who I do not want to see I will deal with it then. If I am not competent, please admit all visitors (except journalists in their role as journalists). If there appear to be disagreements between different people wanting to visit me, arrange for them to visit me at separate times. Do not delegate control of who may or may not visit me to my mother, sister or father. Do not permit anyone (with the exception of my mother, sister and father) to take photographs of me. Health Care Professionals may take photographs of me in the course of treating me.
[I do not like being photographed - regardless of what's going to happen to the pictures. I understand the potential need for photos to be taken to watch how injuries heal etc. It's important that anyone taking photos of me understands that I am not enjoying it and doesn't try to jolly me along into smiling.]
I wish to know everything. I understand that patients have the right to not know information they don't want to know, however, that's not the case with me. I want to know everything. Don't make me drag it out of you. I want all treatment options presented to me, together with your professional opinion on what the most appropriate course of treatment would be.
Please tell me in advance about the side effects of all drugs you are giving me, even if I forget to ask.
Please avoid covering me with plasters/other dressings where possible. I find plaster removal extremely painful.
Medical students/student nurses/other health professionals are very welcome to come with you and examine me to learn from me if I'm a good teaching case.
I am quite happy with having blood tests taken/IV needles inserted/medicine given by the IM/subcutaneous route. I'm also quite happy to be a guinea pig for trainees to practice on if they need to practise their cannualation/venepuncture skills. If I'm looking shaken by the suggestion of an IV/IM/subcutaneous injection, then it's because I'm worried about the implications of the treatment - 'am I really ill enough to need foo?'. It's *not* because I'm scared of needles, because I'm not scared of needles (though I might not be too keen on the idea of a lumbar puncture)
If a vaginal/rectal examination would be helpful in diagnosing what's wrong with me, please go ahead and do it. Please don't give me a general anasethetic for either procedure unless necessary for some other reason.
I consent to participating in drug trials/other research whether they're likely to be of benefit directly to me or not (ie. I consent to research that's only likely to benefit people ill in the future and not me).
Given that I am fairly young and healthy, I would like to receive CPR should my heart stop functioning normally. I am aware that only 4/10 attempts succeed and only 2/10 patients live to leave hospital following a CPR attempt. Given my state of health I believe this is a chance worth taking.
My fertility is important to me. If you have to remove my uterus for whatever reason, please do whatever current best practice suggests to allow me the chance to conceive a child who is genetically mine. This may mean leaving my ovaries in place or freezing them or removing some ova from them and freezing them. If I die and you have genetic material of mine which is frozen I consent to this being donated to those wishing to conceive children or for medical research.
Should I be pregnant, please do all that you can to preserve the life of the foetus. In the event that it's my life or that of the foetus, please abort him/her. I consider my life more important. (Note that if I'm in some sort of coma that I won't recover from please keep me alive until you can deliver the baby. Please use expressed breast milk for so long as is practicable).
If I die from some disease/injury such that it's not possible to donate my organs to other people I consent to biopsies/my brain/other individual organs being retained for medical research.
I do not wish to starve to death. Yes, even if that means keeping me alive when I'm in a persistant vegetative state, I still do not want to be starved.
If I end up in a persistant vegetative state (or some other similar state where there's no chance of me regaining a useful quality of life) *and* the fact that I'm in this state has been independently confirmed by at least two doctors (and that's medically qualified doctors, who are consultants in the field, not doctors of philosophy or anything like that) then please consider whether there are any experimental treatments worth trying/any suitable drug trials worth me participating in. I consent, if I am in such a state, to participating in any suitable trial or experiment. If no such trials/experiments are available or they have been tried and have failed please withdraw all medical treatment from me with the exception of pain relief, food, water (including food/water given by naso-gastric tube/IV) and anything else necessary for ensuring my comfort. I appreciate that I cannot in an advance directive require that I be provided with any particular treatment, but I wish to make my opposition to starving to death known. If you do decide that it's in my best interests to be starved to death, please assume that I am in a substantial amount of pain and give me large doses of morphine/diamorphine/other suitable opiods.
If I am dying, please offer me food and water. I know that as the body shuts down near death the appetite diminishes, but I want the offer of food and water to be made. I do not want to die feeling hungry, thirsty or in pain and if you don't offer me food or drink you won't know whether I want any.
I tend to under-report pain. This is important - it's part of the reason it took three days to diagnose my appendicitis. Rather than ask me to rate my pain on a scale of 1 - 10, ask me if I'd like some painkillers. I'm far too analytical with the 1 - 10 scale and my thoughts go along the line of 'hmm, well this isn't unbearable nor is it the worst pain I've ever been in, so it's not 10. OK, so if it doubled in intensity would it be a 10 - probably not. Right. It's not a 1 or a 2, because it definitely hurts, so it must be 3 - 4.'
If I go very quiet whilst someone is doing something painful to me, it's probable that I'm employing some kind of visualisation or relaxation technique, rather than that I'm in distress.
If I'm being bandaged ie. broken limb, and there's a choice of colour I'd prefer blue or purple bandages. This isn't a major point though.
Access to a radio, correctly tuned to Radio 4 FM is much more important to me than access to a telly. I absolutely detest and refuse to watch, Eastenders, Coronation Street, Big Brother, anything with Delia Smith, anything with Cilla Black. More generally, assume, unless I say otherwise that I don't watch any soaps or any people-kept-together-in-specially-created-enviroment programmes.
Internet access is good, right and proper. If there's internet access, please let me access it/have my computer brought in.
Do not leave me in a pitch black room. Do not permit anyone to bring balloons into the room. Please discourage people from bringing me lots of flowers (the odd bunch is OK, but I'd rather people spent money on something more useful).
I'm odd about touch. Please ask before you touch me. I prefer firmer/more certain touch to fleeting/light touch. I like being hugged. I don't like being pawed at or stroked. Holding my hands is good, but I can have a pretty firm grip so be careful if you've got little hands I might crush. Do NOT touch the small of my back, my armpits or the soles of my feet in an attempt to reassure me by touch.
Sometimes when I'm ill, I don't want to be touched and just want to be left alone. Please respect that. If I'm not competent and you're not sure whether I want to be touched or not, try it, but watch out for moans/physically withdrawing etc. If you don't know me well enough to understand me moaning/groaning that I don't like something, then don't attempt to reassure me by touch.
if I'm in hospital for any length of time,
I suffer from dandruff, please wash my hair with ketconazole shampoo or whatever other medicine is considered the best treatment for it. I prefer washing my hair in a bath, or leaning back over a sink into the water. I dislike someone else using a hand held shower to wash my hair. I generally dislike having other people play with my hair. I find it irritating. I normally cut my own hair. I have very thick hair. I prefer to let it dry naturally. I'm quite happy going to bed with wet hair (providing there's a band holding it in a pony tail). Do not radically alter my hairstyle. I like having long hair. If, for nursing reasons or for my comfort, it would be better for it to be shorter, then please cut it into a bob. Do not layer it.
When I was a child I had psorarsis - it's probably an idea to keep an eye on my skin to check it doesn't come back. My mother thinks I react badly to biological washing powders. At home I use Ecover non-biological and I don't appear to react to it.
I sweat a lot. Please don't shave the hair under my arms more often than once a month, since I sweat more/it smells more just after I've shaved. I tend to wear trousers, so please don't bother shaving my legs unless I'm wearing a dress/skirt for some reason. I do not consent to any hair removal techniques other than shaving and dilapatory creams (please do a patch test before using one of those creams, since I've never used them).
Don't cut my toe nails with tiny nail scissors. It hurts. Use kitchen sized scissors or a specialist tool. Don't cut my finger nails short unless you've got a specific reason for doing so. I hate having short nails. If I'm scratching myself a lot encourage me to do some knitting.
Please check me for all STDs. Depending upon definition, I've had up to four sexual partners. Of these two were bisexual men. I think this places me in a high risk group for Heb B so please immunise me. Please arrange for me to have a cervical smear in accordance with the screening programme (last smear 6th July 2006 - result = normal)(and indeed, arrange for me to participate in any other appropriate screening programmes).
If I stop taking Cerazette (desogestrel - a POP) my periods will eventually return. My periods were heavy and messy. For ease of nursing care/my comfort, it might be an idea to give me a contraceptive implant/injection. I would prefer not to be fitted with an IUS/IUD since I am not monogamous. However, if the choice is between IUS/IUD and hysterectomy I'd prefer the IUS/IUD.
I wear glasses because of my astigmatism. Please arrange for me to have eye tests when necessary. My last test was in June 2007.
I really should have some dental treatment. I find dental treatment very painful and would prefer that it was carried out under sedation.
If I am not competent and I am injured/ill in such a way that I require lots of nursing care (ie. needing to be hoisted from bed to chair, or bed to bath, needing to be turned over in bed) such that it's difficult to care for me because of my weight, then you may place me on a low-calorie diet with the aim of reducing my weight so that I'm easier to care for. You must monitor me closely for signs of distress and treat those. I do not consent to anything other than a medically prescribed low calorie diet. ie. not Atkins, the 'south beach diet', weight watchers, slimming world or anything like that.
If I need long term care, please consider whether I am eligible for NHS continuing care. If the initial answer is 'no', then please instruct solicitors on my behalf to challenge this decision (as the cost of challenging it is likely to be rather less than the total cost of my care).
If I am eligible for NHS continuing care and I have a choice about where this is to be provided I would like either to go to either a suitable specialist unit or to my own home/my mother's home.
If I am not eligible for NHS continuing care then please obtain a full assessment of my needs from Social Services. I would ideally like to be cared for in my own home. If this isn't possible I would like to be cared for at my mother's house. If I need to move to a more suitable home (I currently live in a flat on the second floor), then please sort this out before arranging for any adaptions to be made. Please consider whether my mother wants adaptions made to her house for me or whether I should live in a separate house/ground floor flat near her house.
If it's not feasible for me to be cared for at home with support from carers and adaptions made to the premises, then please consider placing me in very sheltered or sheltered housing before placing me in a residential home. If I am placed in a residential home, please ensure it's one that:
i) caters for people of my age.
ii) can provide me with my own bedroom & double bed (providing I don't need a specialist bed for medical reasons). I do not consent to sharing my bedroom.
iii) can respect my agnosticism and not force me to participate in acts of worship.
iv) is within reasonable travelling distance of my mother's house.
v) will not force me to participate in activities I don't with to join in with
vi) has baths as well as showers available
vii) can provide me with a BT landline (& broadband connection if I am able to make use of the internet). No, a mobile is not sufficient. I refuse to live anywhere without access to a landline. I also refuse to do business with NTL.
viii) has expertise in catering for people with my particular needs
ix) is as small as possible [I choose to live on my own. I resent the concept of sharing my home with other people, so if it has to be that way, make it as few other people as possible]
x) does not have pets. I like other people's pets, on the basis I can stroke and play with them and then *give them back* afterwards. I don't want to live with them.
Alternative Medicine
I do not enjoy being massaged; I find it embarrassing and non-relaxing. I consent to it only if needed for a physical medical reason eg. to relieve cramp, but not for 'relaxation' or other non physical medical reasons.
I do not consent to ear-candeling. Nor do I consent to reflexology - I *hate* having people play with my feet.
Aromatherapy oils/other smelly stuff is liable to make me sneeze. If I appear to be sneezing then discontinue use of any such substance in my room.
I do consent to (assuming there are no specific contra-indications): acqupuncture, aromoatherapy, reiki (not at all convinced it works, but I am convinced it wouldn't be harmful), crystal healing (same here), hypnotherapy (same here), magnet therapy (same here), osteopathy, homoeopathy (in addition to, but not exluding any normal medicine I'm prescribed), herbal medicines (same here). If I'm able to benefit from them I consent to lessons in the Alexander Technique & /or yoga.
Personal care habits
I get dressed in this order: socks, trousers, bra, top, jumper, shoes/slippers. If I need clean knickers I normally do this before I go to bed, if not they come after socks and before trousers. Then I brush my hair and my teeth (unless I've got dressed before breakfast, in which case I brush my teeth after breakfast).
I get undressed in this order: shoes, trousers, knickers, (put on clean knickers, pyjama bottoms if it's cold), jumper, top, bra (put on T shirt style nightie). I wear knickers in bed. I prefer cotton nightclothes. I strongly dislike anything with buttons down the front and/or long sleeves. I tend towards being too hot rather than too cold in bed. If it's very cold I'll wear the previous day's socks to bed and change them for clean socks in the morning. If it's very hot I like my hair to be tied up in a pony tail.
Other clothing points. Unless I'm lying in bed, or curled up on a seat not doing anything I need to wear a bra for comfort. They don't make front-fastening bras in my size, you'll have to struggle with back-fastening ones. Please make sure that whatever I'm wearing is well fitting. I prefer cotton knickers. I dislike thongs. ie. if you need to replace my underwear, replace it with similar stuff to what I've already got. Colour's not important (though no black knickers under pale trousers please). I dislike showing my bra straps, and I dislike wearing tops that expose my arm pits (except when my arm pits have just been shaved) so please stick to cotton tops similar to the ones I already have. Longer tops look better on me. I dislike having anything up close around my neck. I'm not particularly fond of orange or green clothes. I tend to find blouses with buttons gape at the chest. If I am wearing a dress or skirt then I need to wear cycling shorts beneath it or I end up with extremely red/irritated inner thighs. I dislike wearing trainers with smart clothes - I think trainers and black trousers looks cheap and tacky. I wear a pair of well fitting black shoes most of time. Checking that the shoes I'm wearing fit correctly and provide good support would be a good idea. If I need trainers for the support, then I want to wear jeans with them. I don't wear nail varnish, except for special occasions. I don't wear a lot of make up. I get sunburn very easily. Please cover me in lots of sunscreen - preferably E45 factor 50.
I am liable to react badly to being complimented on my appearance. I care about it to the extent that I don't look dirty/unkempt etc. But I value myself for my intelligence, common sense and other skills. Complimenting my appearance at the expense of my achivements is something I'm likely to find insulting.
I expect people who don't know me to address me as 'Ms [Surname]' until I give them permission to call me 'Karen' [usually I do that automatically on being introduced to someone, but don't pressume I will]. If you're going to insist I address you as 'Mr Foo' or 'Dr Bar' then I will make you struggle with my surname. I don't expect to be addressed as 'Miss' if I've ticked the 'Ms' box. And I'm a lawyer. Don't mess with me. Don't tell me I'm a 'good girl'. I'm not a girl, I'm a woman.
I sleep in a dark, but not pitch black room. If I need to get up in the night I'll turn a light on. I like having a bedside lamp so I can read in bed. I like having an electric clock so I can see what the time is when I wake up in the middle of the night.
I eat sultana bran/other cereal/corriander & nann bread/porridge + a yoghurt + coffee + a couple of biscuits for breakfast. Oh and a glass of apple juice or pineapple juice. I do not like having milk on my cereals. I don't like soggy food. I eat my cereal dry. Don't deprive me of my yoghurt or coffee + biscuits unless necessary. I only eat dark, high cocco percentage chocolate eg. Green & Blacks dark chocolate. Do not dunk bread in my soup. Do not cover any salad you want to feed me in dressing. Do not cover my dinner in gravy. I drink water with other meals. I hate lumpy mashed potato. Do not make me miss meals. I will get diarrohea.
If you want to persuade me to exercise try taking me swimming or going for a walk. Do not make me participate in communal exercise classes unless I specifically ask to do so.
I bathe or shower twice a week (more in summer). If I'm showering I'll wash my body with shower gel (generally using my hands rather than a sponge) before washing my hair. If I'm bathing I'll wash my hair first (by leaning back into the bath water) and then the rest of my body with a bar of soap. I only use water to wash my vulva. I prefer bathing to showering.
Terminal Illness
If I am terminally ill I want to be told this. I may want some support in telling family and friends. I DO NOT want anyone else to tell my family and friends for me. I want to do it myself.
I expect that I will want to visit Northen Ireland and Oxford (Oxford more than once) and then depending on my health divide my time between my home, my mother's house & London.
I may wish to use a hospice for respite care/facilities I wouldn't have at home, however, I would like to be cared for at home (either my mother's or my own). This may necessitate the installation of a stair lift and/or the loan of a specialist bed, plus the provision of other equipment eg. a toilet surround and raised seat and grab rails.
I expect respect for my privacy and to be treated as an adult. I will want time alone. I expect people to knock on my door and wait for a response before entering. I may be sexual with visiting friends. Please assume that I am being sexual with other people and need advice on contraception and STI prevention. I would rather receive direct payments from the Social Services Department and employ my own carers so that I can employ people who will fit around my schedule. I do not expect anyone else to dicate rising and bedtimes to me.
I'm not really sure how I envisage spending the final few days of my life. I will want daily internet access for at least a couple of hours each day for as long as I'm capable of using it to stay in touch with long distance friends. I will want to masturbate - DO NOT take my vibrator away; it's a key pain relieving strategy. I will probably be happy to have visitors. I want decent food (assuming I'm still able to eat). I want Radio 4 and comfort reading available (Chalet School books, David Eddings, some others). Play your way through my CD collection (it's small enough that you'll be able to do this). I see it being a quiet time where I am in close physical contact with family members and close friends.
Please leave me alone at night to sleep. Obviously I may need some types of medical care during the night, but keep interfering with me to strictly medical things and do as little as possible. Don't get into bed with me and try to soothe me to sleep 'cos it'll irritate rather than comfort. And don't sit and watch over me. It's entirely possible that I'll die in my sleep, without anyone else there and that is fine by me. If I want people, I'm sure I'll have ways of making that known. Please think about it and come to peace with this in your own minds. I will have a much happier time if we all get to do sleeping at night for sensible amounts of time and we spent time together during the day with everyone well rested. I suspect I will want to employ overnight care staff so that other people in the house can get some restful sleep.
No one is to exhaust themselves caring for me. Spread the load out amongst lots of people. Don't give up work or your social lives. Employ a cleaner/cook in addition to the care staff I need.
Dementia
If I have dementia, I want to be involved in making long-term decisions about my care. I want to live independently for as long as possible. It may be that an early move into sheltered accommodation enables me to do this for longest. Ideally I would like to search for and identify my own nursing home while I still have the ability to make decisions about these matters. I would then like to maintain regular contact with the home during the early and mid stages of my illness so that the place won't seem quite so new and unfamiliar when I eventually move to it. It may be that I search around the available homes and discover that none meet my needs and I decide that I wish to be cared for at home until the end of my life.
Please help me sort through my belongings at an early stage in my illness in order that I can sell/give away the things I don't need, in order to reduce the burden on my family after my death. Please check I have made a will.
I hate housework. I understand that it's important for someone with dementia to be kept active and to have things to do, but please do not create housework or gardening simply to occupy me. I believe housework should be done as an infrequent blitz - two days every other month is about right for it. Also note that I dry my laundry indoors on a clothes horse. I do not use an outdoor washing line. I'm quite happy to cut the grass (but check I've taken my hayfever medication first). I hate other gardening.
I enjoy reading, knitting, some sewing, some other crafts, playing around on the internet, meeting friends, Radio 4.
I work best when I have places to go to at particular times - if possible see if I can be a volunteer for a local charity. I'm not an early morning person though, so no volunteering appointments before 10am please.
I'm quite efficient at using a diary to plan things - please encourage me to keep doing this & to label things in my home.
If I'm losing my ability to communicate in language (or likely to), please consider how you're going to communicate with me - it may be that I could learn PECS or some other system of communication that doesn't rely on me being able to speak.
Please make anyone caring for me aware that I have a phobia of balloons. Do not try to treat the phobia, just keep the balloons away from me.
Do not give me medication to keep me sleepy/drowsy simply for the convenience of my carers.
Funeral Plans
0, I consent for all my organs to be used for transplant/other purposes that directly benefit people (ie. I'm not leaving my body to medical research, but I'd like all the useful bits to be used). If I've died in suspicious circumstances then of course I want a postmortem.
1, To be buried and not cremated.
2, To be buried near to where my family are living ie. in Tadley
3, For the funeral service to be conducted in a church - yes, I know I'm describing myself as agnostic atm, but the point of a funeral service is to comfort the bereaved and my parents/grandparents will be comforted more by a service in a church. We will have the hymns/songs I vow to thee my country, Abide with me, The day thou gavest Lord is ended, Jerusalem. I absolutely forbid the singing of Amazing Grace, All things bright and beautiful and anything by Robbie Williams ie. Angels. I forbid the use of the poem 'Do not stand at my grave and weep'. The poem 'If' by Rudyard Kipling will be read. The old version of the Lord's prayer will be used. After the service a light meal shall be provided somewhere to enable all the mourners to stay together in a more informal setting to comfort each other. Please dress somberly - I don't want everyone in head to toe black, but I don't want people in garishly loud outfits either. Flashes of blue are good, right and proper. Non-waterproof mascara is banned. Details of http://www.crusebereavementcare.org.uk/ and other appropriate services will be handed out to mourners - perhaps as an insert into the Order of Service, together with contact details for the charities listed in 5. Please use the Church of England service - I want formal, short prayers, not rambling long, unstructured ones. I would like family members/friends to be given the opportunity to speak at the service. If it's not possible to do this during a church service, then please have a separate memorial event somewhere else. There is to be no receiving line. Everyone will be encouraged to mingle during the meal after the service. Ensure the service is conducted with sensitivity towards those people present who are not Christian. I would like a mixture of men and women as pall bearers. If there are more than six people wanting to act as pall bearers, please follow the NI custom and take it in turns. The psalm 'The Lord's my Shepherd' will not be read or sung, unless my mother specifically requests it.
4, Family flowers in blue and cream only (and these are to be taken home and not buried with me - flowers are far too pretty to bury).
5, Donations to: Girlguiding UK, QMC, Merton College, Merton College JCR, Liberty, SOS SEN. Please remember to Gift Aid your donations.
6, If you want to do something in memory of me, *please* don't buy me a park bench - be a bit more creative.
7, My Guiding stuff (if not wanted by my immediate family or local Guiding people) is to be offered to Girlguiding UK's archivist
8, My school books/A level work/degree work/LPC notes are to be offered to (a) Merton College library, (b) the Bodleian, (c) the British Library (d) any other library that seems appropriate.
If you're a friend and you learn of my death, the most useful thing you can do is to go and visit my mother and sister and take them some food. Proper meal food will have them in your gratititude for years, cakes/biscuits/other stuff will be warmly welcomed.
You are responsible for your own grief. You are not responsible for anyone else's and you will not interfere with how anyone else chooses to express their grief (save to prevent them causing serious harm to others). Some people will cry, others won't. Unless my mother, my father or my sister directly ask you not to then you have my explicit permission to cry in front of them if you want to. I will come back and haunt anyone who tells someone else they must be 'strong' with the implication that this means they mustn't cry. Likewise I will come back and haunt anyone who tells anyone else to 'let it all out' with the implication that they must cry or they're holding something back.
You do not ban anyone from attending my funeral. Funerals are public events and anyone who wants to come is welcome. I expect announcements to be placed in the Times & the Telegraph as well as any relevant local papers. If you have a problem with any of the other mourners then you arrange to not sit near them during the service, or you act like a grown up and put your differences aside until I'm buried. If there are too many mourners to fit in the church, then you make arrangements for them to listen to the service outside/in another building. If, for whatever reason, there is media interest in my death, then you may (though do not have to) ban television cameras + journalists (in their role as journalists) from attending the service in the church & from attending my interrment. You will allow them to listen to the service as it is broadcast outside the church and you will allow them to film discreetly and with good taste the journey from my home to the church and from the church to the burial site.
If I've been killed in a terrorist attack then I would like the following text to be released to the media:
"I lived in London from May 2003 until March 2006 and came to love the city - it's vibrant, tolerant and exquisitely beautiful. I grew up during the 'Troubles' of the 1980s and I'm just about old enough to remember the final years of the cold war. The threat of violent death at the hands of some group campaigning for a political cause has always been there.
I guess this time my luck ran out. Such is life; I left London for career reasons; I always intended to return. In life I would not allow terrorists to dictate what I did. In death the same holds true; you've not won. You can go on killing and cause many more sets of families and friends the grief mine are suffering right now but you will never win. You'll see it when in a few days time people start going back to work. You'll see it when you search online and you see people turning these events into humour - of course we've all been blown up by a better class of bastard than you. Our terror alert has now been nicely raised to 'bring out the coffee'. You might have killed me, but I live on in the memories of those who knew me. I'm not a victim; to describe me as such implies that I was powerless in the events that caused my death and that's not the case. I'm a solider, for the rights of individuals to run their lives as they choose. I chose to live my life the way I did; I chose to put myself in harm's way, in defiance of your attempts to curb our freedom and my God I've won. Far better to die, living out the freedoms I want to protect for everyone, than to live in fear. You know, I'm probably everything that offends you.
For all I know you've killed several hundred people, all of whom live on in the hearts of their friends and families. The simple lesson you've failed to grasp (despite it being repeated many many times through history) is that terrorism will never help you achieve your aims. The more you murder, the harder it will be for any government to start talking to you and engaging with the potentially legitimate political points you wish to make, because the more you kill, the more angry we will become. Brits have a wirey stubborness. We're digging our heals in. We don't want Her Majesty's Government to talk to terrorists when they do nothing but murder us. Stop the killing and find a negotiation table, please.
To those of you reading this who are feeling angry about what's happened, please think about how you can direct your anger into something constructive - maybe you want to join a political party and campaign for change, maybe you want to volunteer for the Red Cross, maybe there's something else you've got to offer. Don't lose that passion, make it work for you, make it drive you to new heights.
Finally, please think about where you're casting blame; there's no such thing as an 'Islamic terrorist' any more than there's a 'Christian terrorist'. Language matters; the people who carry out these acts may believe they're acting in the name of their own supreme being, but their beliefs do not represent the beliefs of any adherent to any of the world's recognised religions."
I have no objections to a memorial service for me being held in a church (or a mosque or a synangogue or any other place of religious worship (with the exception of whatever buildings Scientologists use for worship)). Nor do I have any objections to a secular memorial service.
I'd love it if a Bank Holiday were established in memory of me and anyone else who died. Put it on the Monday closest in date to the 6th month anniversary, so as to not make it a mournful day, but one when everyone can have a day off. Or if that leads to a silly date, put it somewhere sensible, in a month lacking in Bank holidays. Come on; what better message to send to the terrorists than this!
My politics were unique - My primary identity is as a libertarian. I'm socially liberal and economically conservative. Therefore, I do not consent to my image being used to support campaigns for ID cards/other restrictive measures intended to 'help fight terrorism'.
If you're offered compensation for my death, take it and don't whinge that it's pitiful. I currently don't have dependents, therefore, there's not really much need to compensate anyone for my death. You can't compensate for loss of human life in monetary terms. It's right that compensation money is focused on those who leave dependents. (though I guess there may come a time when my parents are dependent on me for care - if this is the case then I expect lots and lots of compensation to be payable).
If I'm being talked about in the press; I am/was Ms (not Miss) [surname ommited to reduce googleage], a Trainee Solicitor, originally from T[insert name of small town] in Hampshire. I am/was a woman (not a girl or 'a female').
Emergency Bag
If I call you from a hospital ask you to bring me some stuff from home, I probably want:
1, Bedclothes + dressing gown + slippers
2, Underwear, socks
3, Tops (loose cotton, short sleeved)
4, Trousers
5, Spare shoes
6, Soap bag (normally packed in my small suitcase/hanging up in the bathroom), hair brush + bands, towel
7, Alarm clock, glasses case, mini-radio, ear plugs, tissues
8, Mobile phone charger, coins for using the payphone/buying snacks
9, A water bottle
10, Prescription medication
11, Jumper
12, Coat - go for a waterproof
13, Books to read, knitting, writing paper, notebook, pencil case (including lots of pens)
I'll love you forever if you clear the fridge of perishable food, wash any dishes in the sink, empty the bins and do any washing in the laundry basket.
Please do not stay in hospital with me overnight. I sleep better when in a room by myself and you will be of much more use to me if you've had a decent night's sleep in a proper bed and appropriate breakfast intake before coming along to see me.
Medical History
Blood Group - O Rh +ve
Current -
allergic seasonal rhinitis - since I was 13ish - I get symptoms on and off from March to September. I've yet to work out exactly what causes my symptoms. A referral to an allergy clinic to determine what it is would be appreciated.
phobia of balloons bursting - developed when I was 18. I do not consent to implosion therapy as a method of treatment. If I am not competent I do not want any treatment for this phobia (though I imagine if I'm not competent, I'm not going to be in a position where I'd be able to benefit from treatment anyway so the point is somewhat moot).
possible irritable bowel syndrome - I have alternating constipation/diarrohea, I occasionally get pains low in my abdomen that are relieved by passing feaces, I suffer with feacal urgency, and with the sensation of not having completely emptied the bowels.
polycystic ovarian syndrome, - I have obesity, hirsutism, acne, irregular periods, the classic string of tiny cysts on my ovaries.
seborrhoeic dermatitis (dandruff), - have had this on and off since I was a child.
keratosis pilaris
Previous -
anaemia - I had a blood test that couldn't rule out alpha thalessemia trait in June 2005. At this time I had very low MVC and MCHC. I had iron-deficiency anaemia in November 2000.
appendicitis - I had an appendectomy in June 1996
psorarsis - I suffered from this as a child/into my early teens.
tonselitis - I suffered with this regularly as a child. Last time I had it was May 2000.
Family history:
My mother's parents - type II diabetes, heart disease, mini strokes, my mother's father died from a massive stroke.
My father's brother × 2 - glaucoma
My father's sister - asthma (poorly controlled & she died from it)
My father's sister - cervical cancer - eventually spread and she died from it.
Eyes
My current prescription (August 2008) is:
Right - SPH -1.75, CYL -1.00, Axis 80
Left - SPH -0.75, CYL -1.75, Axis 70
Pupilliary distance 62 (managed to watch the person write them down)
My previous prescription (June 2007) is:
Right - SPH -1.50, CYL -1.00, Axis 82.5
Left - SPH -1.00, CYL -1.75, Axis 70
Previous prescription (May 2006) is:
Right - SPH -1.50, CYL -1.00, Axis 80
Left - SPH -0.75, CYL -1.50, Axis 70
Immunisation
I was immunised as a baby against diptheria, tetanus & polio. I wasn't given the pertussis immunisation.
I had a measles (yes, measles only) immunisation as a toddler & a booster of the diptheria, tetanus & polio before I started school.
Rubella (yes, rubella only) at 10, BCG at 12, Measles & Rubella (in the nationwide immunise all school pupils campaign of 1994-5) at 13, dipetheria, tetanus & polio booster at 14 (in May 1995) and some sort of Meningitis vaccine (it wasn't Men C) when I started university at 18.
In the event that I'm not competent to make decisions about my own care please provide me with all immunisations that are medically indicated ie. MMR × 2 because I have no immunity to mumps, Heb B, Hep A (if I'm placed in a long term care facility etc), Pneumococcal (if indicated), seasonal 'flu vaccine (if indicated), HPV (when it becomes available) etc etc.
I had chicken pox when I was 15.
Medical Treatment
This is an advance directive as to the type of medical care I would like should I become unable to make medical decisions for myself. Interspersed with those decisions is other information that will be helpful to health care professionals caring for me if I'm competent but feeling scared/unsure of myself etc.
In the event that I am admitted to hospital and remain competent, I do not wish for anyone to be contacted. I will contact the relevant people myself. Providing me with access to a telephone/internet connected computer would be appreciated. If I am injured in such a way that I cannot speak/hear properly, I may ask for help with making the calls. This does not mean that I want someone to make them for me.
In the event that I am admitted to hospital and am not competent to make decisions about my own care, please contact my mother. If you can't contact her, please contact my sister (yes I know she's 17, she's bright, she can deal with this). If you can't contact her contact my father. If you can't contact any of them, please use your own judgement as to the most appropriate care to provide for me.
In order of precedence in terms of determining the type of care I would choose if competent, please use (1) this advance directive, (2) conversations with my mother, (3) conversations with my sister.
If I am not competent to make decisions about my own care, I consent to be tested for HIV and any other communicable or serious disease, whether for my own benefit or for the benefit of health care staff treating me ie. if a health care professional treating me gets a needle stick injury. If I am found to have a disease as a result of testing, then please tell me once I'm competent to make decisions about my care.
If I'm being ressuciated and allowing the presence of visitors won't compromise my care, please allow my family, friends and anyone who happened to be with me at the time of the injury to watch the process if the wish to watch it. No taking of photographs/filming is to be allowed except for images that will be used solely in the education of health care professionals or images my family take of me after my death.
If I am competent, all visitors, with the exception of members of the press in their role as journalists, are to be admitted to see me. If someone appears who I do not want to see I will deal with it then. If I am not competent, please admit all visitors (except journalists in their role as journalists). If there appear to be disagreements between different people wanting to visit me, arrange for them to visit me at separate times. Do not delegate control of who may or may not visit me to my mother, sister or father. Do not permit anyone (with the exception of my mother, sister and father) to take photographs of me. Health Care Professionals may take photographs of me in the course of treating me.
[I do not like being photographed - regardless of what's going to happen to the pictures. I understand the potential need for photos to be taken to watch how injuries heal etc. It's important that anyone taking photos of me understands that I am not enjoying it and doesn't try to jolly me along into smiling.]
I wish to know everything. I understand that patients have the right to not know information they don't want to know, however, that's not the case with me. I want to know everything. Don't make me drag it out of you. I want all treatment options presented to me, together with your professional opinion on what the most appropriate course of treatment would be.
Please tell me in advance about the side effects of all drugs you are giving me, even if I forget to ask.
Please avoid covering me with plasters/other dressings where possible. I find plaster removal extremely painful.
Medical students/student nurses/other health professionals are very welcome to come with you and examine me to learn from me if I'm a good teaching case.
I am quite happy with having blood tests taken/IV needles inserted/medicine given by the IM/subcutaneous route. I'm also quite happy to be a guinea pig for trainees to practice on if they need to practise their cannualation/venepuncture skills. If I'm looking shaken by the suggestion of an IV/IM/subcutaneous injection, then it's because I'm worried about the implications of the treatment - 'am I really ill enough to need foo?'. It's *not* because I'm scared of needles, because I'm not scared of needles (though I might not be too keen on the idea of a lumbar puncture)
If a vaginal/rectal examination would be helpful in diagnosing what's wrong with me, please go ahead and do it. Please don't give me a general anasethetic for either procedure unless necessary for some other reason.
I consent to participating in drug trials/other research whether they're likely to be of benefit directly to me or not (ie. I consent to research that's only likely to benefit people ill in the future and not me).
Given that I am fairly young and healthy, I would like to receive CPR should my heart stop functioning normally. I am aware that only 4/10 attempts succeed and only 2/10 patients live to leave hospital following a CPR attempt. Given my state of health I believe this is a chance worth taking.
My fertility is important to me. If you have to remove my uterus for whatever reason, please do whatever current best practice suggests to allow me the chance to conceive a child who is genetically mine. This may mean leaving my ovaries in place or freezing them or removing some ova from them and freezing them. If I die and you have genetic material of mine which is frozen I consent to this being donated to those wishing to conceive children or for medical research.
Should I be pregnant, please do all that you can to preserve the life of the foetus. In the event that it's my life or that of the foetus, please abort him/her. I consider my life more important. (Note that if I'm in some sort of coma that I won't recover from please keep me alive until you can deliver the baby. Please use expressed breast milk for so long as is practicable).
If I die from some disease/injury such that it's not possible to donate my organs to other people I consent to biopsies/my brain/other individual organs being retained for medical research.
I do not wish to starve to death. Yes, even if that means keeping me alive when I'm in a persistant vegetative state, I still do not want to be starved.
If I end up in a persistant vegetative state (or some other similar state where there's no chance of me regaining a useful quality of life) *and* the fact that I'm in this state has been independently confirmed by at least two doctors (and that's medically qualified doctors, who are consultants in the field, not doctors of philosophy or anything like that) then please consider whether there are any experimental treatments worth trying/any suitable drug trials worth me participating in. I consent, if I am in such a state, to participating in any suitable trial or experiment. If no such trials/experiments are available or they have been tried and have failed please withdraw all medical treatment from me with the exception of pain relief, food, water (including food/water given by naso-gastric tube/IV) and anything else necessary for ensuring my comfort. I appreciate that I cannot in an advance directive require that I be provided with any particular treatment, but I wish to make my opposition to starving to death known. If you do decide that it's in my best interests to be starved to death, please assume that I am in a substantial amount of pain and give me large doses of morphine/diamorphine/other suitable opiods.
If I am dying, please offer me food and water. I know that as the body shuts down near death the appetite diminishes, but I want the offer of food and water to be made. I do not want to die feeling hungry, thirsty or in pain and if you don't offer me food or drink you won't know whether I want any.
I tend to under-report pain. This is important - it's part of the reason it took three days to diagnose my appendicitis. Rather than ask me to rate my pain on a scale of 1 - 10, ask me if I'd like some painkillers. I'm far too analytical with the 1 - 10 scale and my thoughts go along the line of 'hmm, well this isn't unbearable nor is it the worst pain I've ever been in, so it's not 10. OK, so if it doubled in intensity would it be a 10 - probably not. Right. It's not a 1 or a 2, because it definitely hurts, so it must be 3 - 4.'
If I go very quiet whilst someone is doing something painful to me, it's probable that I'm employing some kind of visualisation or relaxation technique, rather than that I'm in distress.
If I'm being bandaged ie. broken limb, and there's a choice of colour I'd prefer blue or purple bandages. This isn't a major point though.
Access to a radio, correctly tuned to Radio 4 FM is much more important to me than access to a telly. I absolutely detest and refuse to watch, Eastenders, Coronation Street, Big Brother, anything with Delia Smith, anything with Cilla Black. More generally, assume, unless I say otherwise that I don't watch any soaps or any people-kept-together-in-specially-created-enviroment programmes.
Internet access is good, right and proper. If there's internet access, please let me access it/have my computer brought in.
Do not leave me in a pitch black room. Do not permit anyone to bring balloons into the room. Please discourage people from bringing me lots of flowers (the odd bunch is OK, but I'd rather people spent money on something more useful).
I'm odd about touch. Please ask before you touch me. I prefer firmer/more certain touch to fleeting/light touch. I like being hugged. I don't like being pawed at or stroked. Holding my hands is good, but I can have a pretty firm grip so be careful if you've got little hands I might crush. Do NOT touch the small of my back, my armpits or the soles of my feet in an attempt to reassure me by touch.
Sometimes when I'm ill, I don't want to be touched and just want to be left alone. Please respect that. If I'm not competent and you're not sure whether I want to be touched or not, try it, but watch out for moans/physically withdrawing etc. If you don't know me well enough to understand me moaning/groaning that I don't like something, then don't attempt to reassure me by touch.
if I'm in hospital for any length of time,
I suffer from dandruff, please wash my hair with ketconazole shampoo or whatever other medicine is considered the best treatment for it. I prefer washing my hair in a bath, or leaning back over a sink into the water. I dislike someone else using a hand held shower to wash my hair. I generally dislike having other people play with my hair. I find it irritating. I normally cut my own hair. I have very thick hair. I prefer to let it dry naturally. I'm quite happy going to bed with wet hair (providing there's a band holding it in a pony tail). Do not radically alter my hairstyle. I like having long hair. If, for nursing reasons or for my comfort, it would be better for it to be shorter, then please cut it into a bob. Do not layer it.
When I was a child I had psorarsis - it's probably an idea to keep an eye on my skin to check it doesn't come back. My mother thinks I react badly to biological washing powders. At home I use Ecover non-biological and I don't appear to react to it.
I sweat a lot. Please don't shave the hair under my arms more often than once a month, since I sweat more/it smells more just after I've shaved. I tend to wear trousers, so please don't bother shaving my legs unless I'm wearing a dress/skirt for some reason. I do not consent to any hair removal techniques other than shaving and dilapatory creams (please do a patch test before using one of those creams, since I've never used them).
Don't cut my toe nails with tiny nail scissors. It hurts. Use kitchen sized scissors or a specialist tool. Don't cut my finger nails short unless you've got a specific reason for doing so. I hate having short nails. If I'm scratching myself a lot encourage me to do some knitting.
Please check me for all STDs. Depending upon definition, I've had up to four sexual partners. Of these two were bisexual men. I think this places me in a high risk group for Heb B so please immunise me. Please arrange for me to have a cervical smear in accordance with the screening programme (last smear 6th July 2006 - result = normal)(and indeed, arrange for me to participate in any other appropriate screening programmes).
If I stop taking Cerazette (desogestrel - a POP) my periods will eventually return. My periods were heavy and messy. For ease of nursing care/my comfort, it might be an idea to give me a contraceptive implant/injection. I would prefer not to be fitted with an IUS/IUD since I am not monogamous. However, if the choice is between IUS/IUD and hysterectomy I'd prefer the IUS/IUD.
I wear glasses because of my astigmatism. Please arrange for me to have eye tests when necessary. My last test was in June 2007.
I really should have some dental treatment. I find dental treatment very painful and would prefer that it was carried out under sedation.
If I am not competent and I am injured/ill in such a way that I require lots of nursing care (ie. needing to be hoisted from bed to chair, or bed to bath, needing to be turned over in bed) such that it's difficult to care for me because of my weight, then you may place me on a low-calorie diet with the aim of reducing my weight so that I'm easier to care for. You must monitor me closely for signs of distress and treat those. I do not consent to anything other than a medically prescribed low calorie diet. ie. not Atkins, the 'south beach diet', weight watchers, slimming world or anything like that.
If I need long term care, please consider whether I am eligible for NHS continuing care. If the initial answer is 'no', then please instruct solicitors on my behalf to challenge this decision (as the cost of challenging it is likely to be rather less than the total cost of my care).
If I am eligible for NHS continuing care and I have a choice about where this is to be provided I would like either to go to either a suitable specialist unit or to my own home/my mother's home.
If I am not eligible for NHS continuing care then please obtain a full assessment of my needs from Social Services. I would ideally like to be cared for in my own home. If this isn't possible I would like to be cared for at my mother's house. If I need to move to a more suitable home (I currently live in a flat on the second floor), then please sort this out before arranging for any adaptions to be made. Please consider whether my mother wants adaptions made to her house for me or whether I should live in a separate house/ground floor flat near her house.
If it's not feasible for me to be cared for at home with support from carers and adaptions made to the premises, then please consider placing me in very sheltered or sheltered housing before placing me in a residential home. If I am placed in a residential home, please ensure it's one that:
i) caters for people of my age.
ii) can provide me with my own bedroom & double bed (providing I don't need a specialist bed for medical reasons). I do not consent to sharing my bedroom.
iii) can respect my agnosticism and not force me to participate in acts of worship.
iv) is within reasonable travelling distance of my mother's house.
v) will not force me to participate in activities I don't with to join in with
vi) has baths as well as showers available
vii) can provide me with a BT landline (& broadband connection if I am able to make use of the internet). No, a mobile is not sufficient. I refuse to live anywhere without access to a landline. I also refuse to do business with NTL.
viii) has expertise in catering for people with my particular needs
ix) is as small as possible [I choose to live on my own. I resent the concept of sharing my home with other people, so if it has to be that way, make it as few other people as possible]
x) does not have pets. I like other people's pets, on the basis I can stroke and play with them and then *give them back* afterwards. I don't want to live with them.
Alternative Medicine
I do not enjoy being massaged; I find it embarrassing and non-relaxing. I consent to it only if needed for a physical medical reason eg. to relieve cramp, but not for 'relaxation' or other non physical medical reasons.
I do not consent to ear-candeling. Nor do I consent to reflexology - I *hate* having people play with my feet.
Aromatherapy oils/other smelly stuff is liable to make me sneeze. If I appear to be sneezing then discontinue use of any such substance in my room.
I do consent to (assuming there are no specific contra-indications): acqupuncture, aromoatherapy, reiki (not at all convinced it works, but I am convinced it wouldn't be harmful), crystal healing (same here), hypnotherapy (same here), magnet therapy (same here), osteopathy, homoeopathy (in addition to, but not exluding any normal medicine I'm prescribed), herbal medicines (same here). If I'm able to benefit from them I consent to lessons in the Alexander Technique & /or yoga.
Personal care habits
I get dressed in this order: socks, trousers, bra, top, jumper, shoes/slippers. If I need clean knickers I normally do this before I go to bed, if not they come after socks and before trousers. Then I brush my hair and my teeth (unless I've got dressed before breakfast, in which case I brush my teeth after breakfast).
I get undressed in this order: shoes, trousers, knickers, (put on clean knickers, pyjama bottoms if it's cold), jumper, top, bra (put on T shirt style nightie). I wear knickers in bed. I prefer cotton nightclothes. I strongly dislike anything with buttons down the front and/or long sleeves. I tend towards being too hot rather than too cold in bed. If it's very cold I'll wear the previous day's socks to bed and change them for clean socks in the morning. If it's very hot I like my hair to be tied up in a pony tail.
Other clothing points. Unless I'm lying in bed, or curled up on a seat not doing anything I need to wear a bra for comfort. They don't make front-fastening bras in my size, you'll have to struggle with back-fastening ones. Please make sure that whatever I'm wearing is well fitting. I prefer cotton knickers. I dislike thongs. ie. if you need to replace my underwear, replace it with similar stuff to what I've already got. Colour's not important (though no black knickers under pale trousers please). I dislike showing my bra straps, and I dislike wearing tops that expose my arm pits (except when my arm pits have just been shaved) so please stick to cotton tops similar to the ones I already have. Longer tops look better on me. I dislike having anything up close around my neck. I'm not particularly fond of orange or green clothes. I tend to find blouses with buttons gape at the chest. If I am wearing a dress or skirt then I need to wear cycling shorts beneath it or I end up with extremely red/irritated inner thighs. I dislike wearing trainers with smart clothes - I think trainers and black trousers looks cheap and tacky. I wear a pair of well fitting black shoes most of time. Checking that the shoes I'm wearing fit correctly and provide good support would be a good idea. If I need trainers for the support, then I want to wear jeans with them. I don't wear nail varnish, except for special occasions. I don't wear a lot of make up. I get sunburn very easily. Please cover me in lots of sunscreen - preferably E45 factor 50.
I am liable to react badly to being complimented on my appearance. I care about it to the extent that I don't look dirty/unkempt etc. But I value myself for my intelligence, common sense and other skills. Complimenting my appearance at the expense of my achivements is something I'm likely to find insulting.
I expect people who don't know me to address me as 'Ms [Surname]' until I give them permission to call me 'Karen' [usually I do that automatically on being introduced to someone, but don't pressume I will]. If you're going to insist I address you as 'Mr Foo' or 'Dr Bar' then I will make you struggle with my surname. I don't expect to be addressed as 'Miss' if I've ticked the 'Ms' box. And I'm a lawyer. Don't mess with me. Don't tell me I'm a 'good girl'. I'm not a girl, I'm a woman.
I sleep in a dark, but not pitch black room. If I need to get up in the night I'll turn a light on. I like having a bedside lamp so I can read in bed. I like having an electric clock so I can see what the time is when I wake up in the middle of the night.
I eat sultana bran/other cereal/corriander & nann bread/porridge + a yoghurt + coffee + a couple of biscuits for breakfast. Oh and a glass of apple juice or pineapple juice. I do not like having milk on my cereals. I don't like soggy food. I eat my cereal dry. Don't deprive me of my yoghurt or coffee + biscuits unless necessary. I only eat dark, high cocco percentage chocolate eg. Green & Blacks dark chocolate. Do not dunk bread in my soup. Do not cover any salad you want to feed me in dressing. Do not cover my dinner in gravy. I drink water with other meals. I hate lumpy mashed potato. Do not make me miss meals. I will get diarrohea.
If you want to persuade me to exercise try taking me swimming or going for a walk. Do not make me participate in communal exercise classes unless I specifically ask to do so.
I bathe or shower twice a week (more in summer). If I'm showering I'll wash my body with shower gel (generally using my hands rather than a sponge) before washing my hair. If I'm bathing I'll wash my hair first (by leaning back into the bath water) and then the rest of my body with a bar of soap. I only use water to wash my vulva. I prefer bathing to showering.
Terminal Illness
If I am terminally ill I want to be told this. I may want some support in telling family and friends. I DO NOT want anyone else to tell my family and friends for me. I want to do it myself.
I expect that I will want to visit Northen Ireland and Oxford (Oxford more than once) and then depending on my health divide my time between my home, my mother's house & London.
I may wish to use a hospice for respite care/facilities I wouldn't have at home, however, I would like to be cared for at home (either my mother's or my own). This may necessitate the installation of a stair lift and/or the loan of a specialist bed, plus the provision of other equipment eg. a toilet surround and raised seat and grab rails.
I expect respect for my privacy and to be treated as an adult. I will want time alone. I expect people to knock on my door and wait for a response before entering. I may be sexual with visiting friends. Please assume that I am being sexual with other people and need advice on contraception and STI prevention. I would rather receive direct payments from the Social Services Department and employ my own carers so that I can employ people who will fit around my schedule. I do not expect anyone else to dicate rising and bedtimes to me.
I'm not really sure how I envisage spending the final few days of my life. I will want daily internet access for at least a couple of hours each day for as long as I'm capable of using it to stay in touch with long distance friends. I will want to masturbate - DO NOT take my vibrator away; it's a key pain relieving strategy. I will probably be happy to have visitors. I want decent food (assuming I'm still able to eat). I want Radio 4 and comfort reading available (Chalet School books, David Eddings, some others). Play your way through my CD collection (it's small enough that you'll be able to do this). I see it being a quiet time where I am in close physical contact with family members and close friends.
Please leave me alone at night to sleep. Obviously I may need some types of medical care during the night, but keep interfering with me to strictly medical things and do as little as possible. Don't get into bed with me and try to soothe me to sleep 'cos it'll irritate rather than comfort. And don't sit and watch over me. It's entirely possible that I'll die in my sleep, without anyone else there and that is fine by me. If I want people, I'm sure I'll have ways of making that known. Please think about it and come to peace with this in your own minds. I will have a much happier time if we all get to do sleeping at night for sensible amounts of time and we spent time together during the day with everyone well rested. I suspect I will want to employ overnight care staff so that other people in the house can get some restful sleep.
No one is to exhaust themselves caring for me. Spread the load out amongst lots of people. Don't give up work or your social lives. Employ a cleaner/cook in addition to the care staff I need.
Dementia
If I have dementia, I want to be involved in making long-term decisions about my care. I want to live independently for as long as possible. It may be that an early move into sheltered accommodation enables me to do this for longest. Ideally I would like to search for and identify my own nursing home while I still have the ability to make decisions about these matters. I would then like to maintain regular contact with the home during the early and mid stages of my illness so that the place won't seem quite so new and unfamiliar when I eventually move to it. It may be that I search around the available homes and discover that none meet my needs and I decide that I wish to be cared for at home until the end of my life.
Please help me sort through my belongings at an early stage in my illness in order that I can sell/give away the things I don't need, in order to reduce the burden on my family after my death. Please check I have made a will.
I hate housework. I understand that it's important for someone with dementia to be kept active and to have things to do, but please do not create housework or gardening simply to occupy me. I believe housework should be done as an infrequent blitz - two days every other month is about right for it. Also note that I dry my laundry indoors on a clothes horse. I do not use an outdoor washing line. I'm quite happy to cut the grass (but check I've taken my hayfever medication first). I hate other gardening.
I enjoy reading, knitting, some sewing, some other crafts, playing around on the internet, meeting friends, Radio 4.
I work best when I have places to go to at particular times - if possible see if I can be a volunteer for a local charity. I'm not an early morning person though, so no volunteering appointments before 10am please.
I'm quite efficient at using a diary to plan things - please encourage me to keep doing this & to label things in my home.
If I'm losing my ability to communicate in language (or likely to), please consider how you're going to communicate with me - it may be that I could learn PECS or some other system of communication that doesn't rely on me being able to speak.
Please make anyone caring for me aware that I have a phobia of balloons. Do not try to treat the phobia, just keep the balloons away from me.
Do not give me medication to keep me sleepy/drowsy simply for the convenience of my carers.
Funeral Plans
0, I consent for all my organs to be used for transplant/other purposes that directly benefit people (ie. I'm not leaving my body to medical research, but I'd like all the useful bits to be used). If I've died in suspicious circumstances then of course I want a postmortem.
1, To be buried and not cremated.
2, To be buried near to where my family are living ie. in Tadley
3, For the funeral service to be conducted in a church - yes, I know I'm describing myself as agnostic atm, but the point of a funeral service is to comfort the bereaved and my parents/grandparents will be comforted more by a service in a church. We will have the hymns/songs I vow to thee my country, Abide with me, The day thou gavest Lord is ended, Jerusalem. I absolutely forbid the singing of Amazing Grace, All things bright and beautiful and anything by Robbie Williams ie. Angels. I forbid the use of the poem 'Do not stand at my grave and weep'. The poem 'If' by Rudyard Kipling will be read. The old version of the Lord's prayer will be used. After the service a light meal shall be provided somewhere to enable all the mourners to stay together in a more informal setting to comfort each other. Please dress somberly - I don't want everyone in head to toe black, but I don't want people in garishly loud outfits either. Flashes of blue are good, right and proper. Non-waterproof mascara is banned. Details of http://www.crusebereavementcare.org.uk/ and other appropriate services will be handed out to mourners - perhaps as an insert into the Order of Service, together with contact details for the charities listed in 5. Please use the Church of England service - I want formal, short prayers, not rambling long, unstructured ones. I would like family members/friends to be given the opportunity to speak at the service. If it's not possible to do this during a church service, then please have a separate memorial event somewhere else. There is to be no receiving line. Everyone will be encouraged to mingle during the meal after the service. Ensure the service is conducted with sensitivity towards those people present who are not Christian. I would like a mixture of men and women as pall bearers. If there are more than six people wanting to act as pall bearers, please follow the NI custom and take it in turns. The psalm 'The Lord's my Shepherd' will not be read or sung, unless my mother specifically requests it.
4, Family flowers in blue and cream only (and these are to be taken home and not buried with me - flowers are far too pretty to bury).
5, Donations to: Girlguiding UK, QMC, Merton College, Merton College JCR, Liberty, SOS SEN. Please remember to Gift Aid your donations.
6, If you want to do something in memory of me, *please* don't buy me a park bench - be a bit more creative.
7, My Guiding stuff (if not wanted by my immediate family or local Guiding people) is to be offered to Girlguiding UK's archivist
8, My school books/A level work/degree work/LPC notes are to be offered to (a) Merton College library, (b) the Bodleian, (c) the British Library (d) any other library that seems appropriate.
If you're a friend and you learn of my death, the most useful thing you can do is to go and visit my mother and sister and take them some food. Proper meal food will have them in your gratititude for years, cakes/biscuits/other stuff will be warmly welcomed.
You are responsible for your own grief. You are not responsible for anyone else's and you will not interfere with how anyone else chooses to express their grief (save to prevent them causing serious harm to others). Some people will cry, others won't. Unless my mother, my father or my sister directly ask you not to then you have my explicit permission to cry in front of them if you want to. I will come back and haunt anyone who tells someone else they must be 'strong' with the implication that this means they mustn't cry. Likewise I will come back and haunt anyone who tells anyone else to 'let it all out' with the implication that they must cry or they're holding something back.
You do not ban anyone from attending my funeral. Funerals are public events and anyone who wants to come is welcome. I expect announcements to be placed in the Times & the Telegraph as well as any relevant local papers. If you have a problem with any of the other mourners then you arrange to not sit near them during the service, or you act like a grown up and put your differences aside until I'm buried. If there are too many mourners to fit in the church, then you make arrangements for them to listen to the service outside/in another building. If, for whatever reason, there is media interest in my death, then you may (though do not have to) ban television cameras + journalists (in their role as journalists) from attending the service in the church & from attending my interrment. You will allow them to listen to the service as it is broadcast outside the church and you will allow them to film discreetly and with good taste the journey from my home to the church and from the church to the burial site.
If I've been killed in a terrorist attack then I would like the following text to be released to the media:
"I lived in London from May 2003 until March 2006 and came to love the city - it's vibrant, tolerant and exquisitely beautiful. I grew up during the 'Troubles' of the 1980s and I'm just about old enough to remember the final years of the cold war. The threat of violent death at the hands of some group campaigning for a political cause has always been there.
I guess this time my luck ran out. Such is life; I left London for career reasons; I always intended to return. In life I would not allow terrorists to dictate what I did. In death the same holds true; you've not won. You can go on killing and cause many more sets of families and friends the grief mine are suffering right now but you will never win. You'll see it when in a few days time people start going back to work. You'll see it when you search online and you see people turning these events into humour - of course we've all been blown up by a better class of bastard than you. Our terror alert has now been nicely raised to 'bring out the coffee'. You might have killed me, but I live on in the memories of those who knew me. I'm not a victim; to describe me as such implies that I was powerless in the events that caused my death and that's not the case. I'm a solider, for the rights of individuals to run their lives as they choose. I chose to live my life the way I did; I chose to put myself in harm's way, in defiance of your attempts to curb our freedom and my God I've won. Far better to die, living out the freedoms I want to protect for everyone, than to live in fear. You know, I'm probably everything that offends you.
For all I know you've killed several hundred people, all of whom live on in the hearts of their friends and families. The simple lesson you've failed to grasp (despite it being repeated many many times through history) is that terrorism will never help you achieve your aims. The more you murder, the harder it will be for any government to start talking to you and engaging with the potentially legitimate political points you wish to make, because the more you kill, the more angry we will become. Brits have a wirey stubborness. We're digging our heals in. We don't want Her Majesty's Government to talk to terrorists when they do nothing but murder us. Stop the killing and find a negotiation table, please.
To those of you reading this who are feeling angry about what's happened, please think about how you can direct your anger into something constructive - maybe you want to join a political party and campaign for change, maybe you want to volunteer for the Red Cross, maybe there's something else you've got to offer. Don't lose that passion, make it work for you, make it drive you to new heights.
Finally, please think about where you're casting blame; there's no such thing as an 'Islamic terrorist' any more than there's a 'Christian terrorist'. Language matters; the people who carry out these acts may believe they're acting in the name of their own supreme being, but their beliefs do not represent the beliefs of any adherent to any of the world's recognised religions."
I have no objections to a memorial service for me being held in a church (or a mosque or a synangogue or any other place of religious worship (with the exception of whatever buildings Scientologists use for worship)). Nor do I have any objections to a secular memorial service.
I'd love it if a Bank Holiday were established in memory of me and anyone else who died. Put it on the Monday closest in date to the 6th month anniversary, so as to not make it a mournful day, but one when everyone can have a day off. Or if that leads to a silly date, put it somewhere sensible, in a month lacking in Bank holidays. Come on; what better message to send to the terrorists than this!
My politics were unique - My primary identity is as a libertarian. I'm socially liberal and economically conservative. Therefore, I do not consent to my image being used to support campaigns for ID cards/other restrictive measures intended to 'help fight terrorism'.
If you're offered compensation for my death, take it and don't whinge that it's pitiful. I currently don't have dependents, therefore, there's not really much need to compensate anyone for my death. You can't compensate for loss of human life in monetary terms. It's right that compensation money is focused on those who leave dependents. (though I guess there may come a time when my parents are dependent on me for care - if this is the case then I expect lots and lots of compensation to be payable).
If I'm being talked about in the press; I am/was Ms (not Miss) [surname ommited to reduce googleage], a Trainee Solicitor, originally from T[insert name of small town] in Hampshire. I am/was a woman (not a girl or 'a female').