TOO TIRED TO BE TIRED? WHO CARES?? Paper by Louise Lowe, Educator and Attitude Challenger Presented to Alzheimers Australia Qld Symposium 23/04/04 At the Parliamentary Annex, BRISBANE * Hello everyone. Thank you for your welcome; I am introduced as an Educator, which I am, but I also like to think of myself as an ATTITUDE CHANGER! * Today I am directing my message to carers however, I hope there is something here of interest for everyone! * On my way here, I was thinking, how can I help to change or improve the lives of carers? A big ask in 15 minutes…..you might even say it’s a bit presumptuous of me! But maybe I can sow some seeds; maybe some of the points I make will give you the chance to make a difference in your lives as carers. Not everything I say may apply to you, but I ask that you keep an open mind and not take anything I say too personally! * I am going to go through with you what I call “Louise’s Golden Rules” – also known as my 10-point plan, which is a mixture of advice, Challenge, a few home truths and a bit of humour thrown in! I showed my paper to a colleague in the industry I work in, and she Said “Louise, you have to tell your story, so that people can get an idea of your own experiences, which is what you base your own lessons and advice on!” So, even though I don’t usually do this, here is (some of) my story! 43 yrs ago, at the age of 12 (yes, I’m 55!!) I basically woke up paralysed from the neck downwards. After 2 years in a hospital in NZ and NO treatment whatsoever (there were no Spinal Units there at that time) , then 2 yrs in a rehab centre in Holland I finally got a diagnosis. Transverse Myelitis is a disease of the autoimmune system and attacks the spinal cord. Among the many weird and wonderful symptoms I experience is pain, mostly 24/7 at levels ranging up to 10/10 which – because it is neuropathic pain – can manifest itself anywhere in my back or neck. I am also now riddled with osteo-arthritis. My type of TM is progressive and I am also likely to go on to develop MS. During the last 5 years I have had to give up driving & full-time work and my husband sold his small business to become my carer, driver and housekeeper. He assists me with showering & toileting - I wear a catheter now – as well as transferring exercising etc. After selling our home and living off savings for 6 months while renting a house by the sea and contemplating our future, we finally conceded that - for the first time in my life as a person with a disability, we had to apply for a disability support payment. Now that’s a VERY humbling and humiliating experience!! However, we still considered ourselves fortunate to have had this assistance when we really needed it. Then we decided to be smart and save ourselves paying rent and power and therefore maintaining a reasonably good lifestyle, and that’s how we ended up caretaking on 750 acres! Not bad for city slickers!! Slowly with the lifestyle change, things started to improve and I was able to start working again. One predictable thing about TM is that it is unpredictable and I am slowly losing not only strength and abilities, but my short and long term recall is being increasingly affected. This is rather scary I have to say, but like everything else, we do the best we can and try to take responsibility for planning for the future without stressing over it. So why am I telling you all this and what is the relevance to my presentation?? Certainly not because I want your sympathy vote nor because I want to be thought of as one of those wonderful ‘supercrips’! Well, apart from letting you know that I’ve been around for a while, I wanted you to know that I have some experience from a “caree” perspective. I also gained a carers perspective not just from my work, but because suddenly and unexpectedly last year, my husband had a heart attack, and our roles had to become reversed (sort of – thank God, he made a fairly good recovery, but initially he could not assist me much so it was a bit like the blind leading the blind, plus we had to use “respite” for the first time ever! What a blessing! So caring is something we are well familiar with……I also have a daughter with Bi Polar disorder who requires support and we have a close family member going through the early stages of dementia and we’re preparing for some intense involvement there in the future. Now lets get on with this plan!! LOUISE’S GOLDEN RULES for keeping proud, sane & happy! (These are all good investments) GET THE ATTITUDE RIGHT -believe you can cope – acceptance of things you cannot change -don’t look at your role as a death sentence or something you don’t have a choice about; we all have choices in life. Tell yourself this is what you want to do and do it the best you can It’s a lot about perceptions really; you see what you want to see!! We all have different levels of coping (story of 2 women caring for their parent…different attitudes) Don’t consider yourself a victim or allow yourself to be treated as one. MANAGE IT (don’t let it manage you) Don’t make yourself a slave to your challenging circumstances; don’t let your anxieties take over; have your duties planned but not so rigid that you feel trapped; don’t let others take over your life or make decisions for you. Know what is happening in your charge’s life; ask questions (profs, Drs etc); don let anyone talk over you or treat you as a nobody – you are vital in this role! HAVE AN EMERGENCY or BACK-UP PLAN; be organised; learn to prioritise so you don’t feel frustrated of some things don’t get done. EMPOWER YOURSELF Arm yourself with all the information you need; make informed decisions (consult though); ask for an explanation; find out exactly what you are entitled to; talk to others in similar circumstances (gang together if need be!) Be assertive; speak up/out; stand your ground over important issues; you don’t need to be an expert but you can get the info from experts. DON’T DWELL ON IT DON’T WASTE ENERGY; Let go of things that are insignificant or you cannot change. Dont use up your energy negatively. If you take a path and its not right, try another. Learn how to move on and not get get hung up about things. Don’t dwell on the “what if’s” … there IS no crystal ball, no real guarantees about anything in life. Learn to say “so what!” and “that’s life!”. Find things to distract yourself when you go into the negative mode. DON’T BE A MARTYR Don’t take on any more than you can handle…..(challenge about how many are offered but refuse help) Use whatever services there are to help you. Especially respite because you need a break to keep yourself refreshed and recharge your batteries. (others may not be as good as you at caring but how long will you last otherwise….) Learn how to say NO; don’t get railroaded. Its okay to tell people you don’t want to or cant do it….. so what if you’re not up to it! You don’t have to explain or give reasons either. And don’t worry about what others think anyway! Being a carer doesn’t or shouldn’t stop you from having some kind of a life yourself, so you should never have to feel guilty about pursuing an interest of your own or asking someone else to step in. Get enough sleep! (don’t laugh at this!) BE TRUE TO YOURSELF Be honest with yourself; don’t pretend you’re coping when you’re not; look after yourself first (remember the aircraft rule) Admit and recognise your limitations ; work out what is acceptable to you and use that as your framework; look after your health & make sure you do some real exercise; do some navel-gazing – ask yourself if things need to change and how often you have complained about them. Then work on them. If you cant change them – get over it!! Have a sanity kit; (DEMONSTRATE TOOLS – stress ball, stick/tree or carpet/racket; some of your favourite music; bottle of red; comedy tapes); pursue your favourite things and MAKE TIME for these; reward yourself (sensibly) Finally, learn to think outside the square, Don’t be afraid to change HOW you do things, do them differently, experiment but be realistic and learn to evaluate its success! SURROUND YOURSELF WITH POSITIVE PEOPLE Speaks for itself. Hang around misery – you become miserable. Life is far less stressful if you can get those out of your life who are negative and draining. Don’t you always feel better when you have been in the company of a cheerful, positive person?? However its fine to take a day off from being cheerful from time to time; we all have our off days. I have the odd, really bad pain day when I stay in my nightie all day and do just nothing or go out into the garden (you can do this when you’re 1 km off the road!!). But I use this day as a ‘re-juvinator’, and set my sights on the next day, which WILL be positive. HAVE HUMOUR IN YOUR LIFE Learn how to have fun and laugh things off. My husband & I are constantly laughing & making light of things. (The sign said: “Smile, things could be worse; and sure enough, I smiled and things got worse!”) Incorporate some fun into your work routine (dance while you are doing things around the house….be a little bit crazy! Read funny books, play a comedy tape now and then). Take in a crazy movie now and then. COUNT YOUR BLESSINGS Look around you…..is it really all that bad?? Take a ‘MY CUP IS HALF FULL” ATTITUDE rather than a “MY CUP IS HALF EMPTY”. Celebrate your successes; take note of the good and nice things that happen around you. Keep a journal; write down the positive things in your life and read them often – especially when you are having a bad day. Look for the silver lining in the cloud – there is always one to be found! And you know, there is always someone worse off than yourself! Remember the saying “I felt sorry for myself because I had no shoes, and then I met a man who had no feet” CELEBRATE LIFE I have signs and post-it notes everywhere in my house, and one my favourite ones is HAPPINESS IS A DECISION, NOT AN UNCONTROLLED EMOTION. It’s true isn’t it? We are here, on this earth, so let’s make the most of it!! Be part of your community; get involved where you can (and the community will embrace you too, even share your load) Smell the roses, smell the coffee. Have pride in your achievements as a carer. Pat yourself on the back for a job well done! Enjoy each day and each moment as a new experience. So that’s it, the 10-point plan! I hope there is something here that inspires or motivates you. If not, thanks for listening anyway! Now, finally, I have written something especially for today that I want to read to you…..call it my dedication to carers. I hope you enjoy it! AN ODE FOR THE CARER (adapted by Louise Lowe) By the time our creator made carers, he was into his sixth day of working overtime. An angel appeared and said, "why are you spending so much time on these ones?" And the creator answered, "Have you seen my spec sheet on these carers? They have to be completely flexible, but not breakable, have over 200 movable parts, all replaceable, and have an iron will, the patience of a saint and the biggest heart of all that I create. They must be able to run on diet coke and leftovers, have a lap that can hold not only their own but others’ problems, and have a kind word or a hug that can cure or forgive anything from a sad heart to an angry outburst to a forgotten face or memory; AND they will do everything with only two hands!!” The angel was astounded at the requirements. "Only two hands!? No way! And that's just on the standard model? That's too much work for one day. Wait until tomorrow to finish." "But I won't," the creator protested. "I am so close to finishing this creation that is so dear to my own heart. They already heal themselves when they are sick AND they can work 24-hour days, seven days a week without pay or holidays. What’s more, carers can come in all shapes, sizes and colours; they can be male or female. Mind you, they may not plan to be a carer but will be able to adapt to that role where others cannot.” The angel moved closer and touched the carer. "But you have made the carer so soft" "They are not so soft as tender," the creator said, "but I have also made them tough. You have no idea what they will have to endure or accomplish." "Will they be able to think?" asked the angel. The Creator replied, "Not only will they be able to think, they will be be innovative, adaptable and be able to reason and negotiate." The angel then noticed something, and reaching out, touched the carer's cheek. "Oops, it looks like you have a leak in this model. I told you that you were trying to put too much into this one." "That's not a leak," the Creator corrected, "that's a tear!" "What's the tear for?" the angel asked. The Creator said, "The tear is their way of expressing joy, sorrow, pain, disappointment, frustration, love, loneliness, grief and pride." The angel was impressed. "You are a genius. You thought of everything! This carer is truly amazing." Carers Are!! Carers have strengths that amaze other people. They bear hardships and they carry burdens, but still they try to hold happiness, love and joy. They may smile when they want to scream. They may sing when they want to cry. They may cry when they are happy and laugh when they are worried. They may crack jokes at the most inopportune times and have the capacity to pretend all is well when they are screaming inside. They fight for what they believe in. They stand up to injustice. They don't take "no" for an answer when they believe there is a better solution. They go without so those in their care can have. They love unconditionally. They praise when their ‘charge’ shows any progress or even a slight expression and cheer when they know they are content. They celebrate when any day is even slightly better than the last. They are happy for others when they hear their good news; Their hearts may break when a friend suffers a loss but seldom do think of their own. They may grieve at the slightest loss or disappointment, yet they are strong when they think there is no strength left. They make the biggest contribution to the country’s economy, yet are hardly noticed by those who don’t need to understand. The heart and will of a carer is what makes the world keep turning. They have compassion and ideals. They give physical, mental, spiritual and moral support to those they care for. Carers have vital things to do and everything to give. Note from Louise: HOWEVER, IF THERE ARE ONE OR TWO FLAWS IN CARERS, IT IS THAT SOMETIMES THEY FORGET THEIR WORTH AND THEY ARE NOT TOO GOOD AT ACCEPTING HELP (EVEN IF OFFERED)!!