A Day in the Live of a Carer...

Hi all....

Wrote this for The Irish Carer's Assoc. Newsletter..... O'Karol asked me to put it on IHD.... Here it is.... Make of it what you will..... By the way, The 'Supplies from the HSE' describes Incontinence Products from the Health Service Exexutive....

Love to all....

Darth....

When Karen asked me to write this article, the very first in a series, I was horrified... What would I say???... Would it be boring???... More importantly, who in the name of all that's sweet and holy would want to read what I have to say???... And which day would I pick to describe???.... I'm just another person trotting along on the Hamster Wheel of caring!... I may be slightly different to 'the norm', though... Let me explain....

I'm female (nothing new there... most carers are!), I'm forty-six, I'm caring for my mum, Elsie, seventy-two, who's got Chronic Kidney Disease, and is on peretonitial dialysis at home... Mum also has Arthritis, Diverticular Disease, and now has Parkinson's Disease... She's only barely mobile indoors... Her balance is poor, and she shakes badly.... She uses a powered wheelchair outdoors... What makes me slightly different I suppose is, I'm a wheelchair user, and have significant health issues, too... I have Ehlers-Danlos Syndrome, a genetic collegen defect... This means I dislocate joints easily, tear skin for nearly no reason, and have heart valve, and respiritory problems, arthritis, and hypertension, multiple serious allergies... The staff at several A&E depts, and I are on first name terms by now!... Apart from that I'm in perfect working order!!!....

Anyway, as Karen thinks I've something to say, and is prepared to take all of the blame, here we go...

It's 6am on a bright, dry Monday morning, and Mum's just out of hospital following another peretonitis, her third... I came home from shopping to find her on the floor with a dreadful fever... She was very ill... Remembers nothing of the Ambulance crew, or A&E... Maybe it's just as well that she doesn't... Not a nice place to be... She's frail, and very scared... Scared of becoming sicker, and most of all, scared of ending up in A&E again!... Can't say I blame her... Anyone who's been there will know that it's the worst place to be when you're elderly, and ill... Anyway, as she's awake, I get her some tea... Then she does her first dialysis exchange of the day... When she's done that, and it takes about forty minutes, I get her showered and changed, and she goes back to bed to listen to Morning Ireland... Meanwhile, I'm taking in the fourth load of washing from the line... How so many loads by such an early hour???... Well, two reasons... I'm watching Mum like a hawk... I'm wary of her developing another infection, and if she does, I want to be on top of it as soon as possible... Besides, my Wisdom Teeth were bothering me, I didn't get any sleep anyway... Yes I know... Getting Wisdom Teeth at my age... Forty-six years old, and I'm teething!... Where's the industrial strength Bonjella???.... So I decided to get the laundry done... What carer doesn't have loads of laundry???... It was a nice, dry, windy night... Perfect for drying... Mind you, if my neighbours had seen me hanging clothes on the line at 2am, 3.30am, 5am, and 6.30am, they would have been seriously doubting my sanity... Still, what passes for my sanity has often been questioned, so that's nothing new!... Just ask Cathy from the Clondalkin Carers Centre!!!... And by the way Cathy... You're as daft as a brush yourself!!!!....

I take 'Dougal' the dog for his walk... This is a very important forty-five minutes or so for me... Gets me outside in the air, gives me the chance to clear my head, and I often meet other dog owners for a chat... Caring can be lonely, and isolating, so I grab at all contact I can.... Get the hound fed and watered, and get to the other things on the day's list!...

Now it's a busy morning... Mum's dialysis supplies are due to be delivered... So many boxes of Dialysis Fluids (Dialsyte), dressings, paper towel, sterile surface wipes, sanitizing hand gel, adhesive tape, sterile saline, etc... My spare room looks like a pharmacutical factory... I call Baxter Healthcare every four weeks, tell them what supplies we have left, they calculate what we need, and we get the delivery the following Monday between 9 and 10am... I have to say, Baxter are fantastic in this regard, and I'm certain everything's in hand and will be properly delivered... On the very rare occasion there's a problem, they offer to courier what we need that day... It's a huge weight off my mind... Delivery Driver Jim is exactly on time, and as always is pleasent and helpful... Due to my disability, I can't lift much, so he puts the boxes in exactly the order I'll need them for the next four weeks....

I'm expecting a technician to fix a malfunctioning contol consule on my powered wheelchair... Without a good, strong, robust wheelchair, I can't function... Bear in mind, my chair not does all of the things I need to do, I do all of Mum's errands in it too... I don't drive... As I dislocate joints, it would be irresponsible of me to do so... I need to attend to all the other day's bits and pieces around that visit... It's 10am, and I decide to make a quick dash for it... I pop out to the doctor's surgeries to pick up our prescriptions, and drop them into the pharmacy to be filled... As our prescriptions are so large and detailed, I call the pharmacy the day before to warn them that I'm bringing in our prescriptions... They usually start working on them on that day... I do some grocery shopping while I'm waiting, and go back to collect the prescriptions... I'm home within a couple of hours... Honestly, I could do with a trailer on the back of my wheelchair what with the shopping and the six carrier bags from the pharmacy... On the other hand, the chair does mean I don't have to carry the shopping!.... Consule on chair is REALLY suffering now... I'll be glad to see that tech....

Home at 12 noon.... I unpack the shopping, put the kettle on, unpack the medications, and start planning lunch... Now that's a saga... As Mum's kidneys don't work, she can't eat lots of foods... They're either too high in potassium, phosphorous, sodium, etc... Or they're too low in calories or protien... Cooking Renal's fun... NOT!!!... Mum's diet has to be High Calorie, High Protien, Low Phospherous, Low Potassium, and low sodium... Sometimes I'm tempted to hand her an empty plate, and say "Here, lick that... You might get a few calories!"... But still, I'm getting better at it... Haven't poisoned Mum... YET!... Have you ever eaten a Double Boiled potato???... Take a word of friendly advice, don't bother... Totally tasteless... So I lace the mashed potatoes with garlic butter, and garlic pepper to flavour it... Yes, we DO have Dragon Breath, but on the plus side, we don't get many visiting vampires!... Anyway, I turn to lunch... By the time I figure out something we can both eat (I've a nut allergy), we're almost not hungry..... But needs must, and I cook a meal that's high in protien, but low in potassium, etc... Getting her to eat it is another matter... Her appitite's not great... But she eats a fair bit, and I'm happy... She dialyses again... She does this three times daily...

Of course, I need to watch Mum's medication, too... Kidney patients are so unstable, the slightest error in a medication can be fatal... Remind her to take her Phosphate Binders, and she's due a Folic Acid pill.... Oh, and she's due an Arenesp injection too (helps her to produce red blood cells, reducing anamia)... So I administer that after lunch... Yes, I could ask the Community Nurse to call and do it, but it's easy enough for me to do, and I think it's unfair of me to take up nursing time that somebody else needs... Besides, It's a point of fun for Mum and I... I'm always making threats to blunt the needle, or leave it outside of the window to let the needle rust!!!...Now would I do that???... Mum's just answered with a resounding "YES!"... Don't tempt me, Woman... Mum's now very tired, so I see her back to bed to listen to Liveline on radio (I call it going to bed with Joe Duffy!), and have some sleep, and I clear up after lunch... Whoever it was who pursuaded me to get a dishwasher, thank you... One of life's great inventions!...

I decide to make a few phone calls... Hospital appointments for Mum, Dentist appointment for myself, and arrange delivery of mum's erm, 'supplies' from the HSE... I'll say no more on that subject, Mum's dignity forbids that, but I'll bet most of you carers out there know exactly what I'm referring to.... The Community Nurse calls to do Mum's follow up visit after her hospital admission... Asks if she can help us in any way.... I inform her that I need a knee replacement, and I'd like to have help for Mum while I'm in hospital... We discuss the options available... Home Care v Nursing Home Respite... Mum agrees to go into a nursing home, thank God... I'd rather she wasn't at home alone... We don't have any family support, it's just Mum and I... So now I've just to get the operation date... It sounds too easy.... We'll see!... Cynical???... Me???.... You flipping bet I'm cynical... I've been caring for Mum for over three years... I've experienced the pitch battles to get any service!!!... I'm often asked how many hours Home Help I get per day... Hah!... Per day???... we get three and a half hours per WEEK!...

Technician arrives... "You've got a major screw loose, Carolyn!" says he.... Well, honestly!... I know I can be somewhat eccentric on occasions, but there's really no need to be so rude!... Oh, right, sorry, he means the chair has a screw loose... Later Mum tells me that she thinks the first senario's more accurate!... Thanks Mum... I love you too!... Okay... Chair gets fixed, Mum's asleep, and it's 2pm... I've learned something in the last few months of caring... When Mum sleeps in the afternoon, if there's nothing important to be done, so do I... It's nice to catch up on some lost shut eye...

I get up refreshed about 5pm... Sort out the now dry laundry, get some light housework done, and start the evening meal... I say meal, but she'll only have a snack... A toasted sandwich, and a cup of tea, or suchlike... Of course, I've to keep a good eye on her fluid intake too... If someone gets fluid overloaded, they get very breatless, and they're at a high risk of heart attack... Now Mum being a lady of 'a certain generation' would drink gallons of tea if she could... Sadly, that can't happen anymore... Got to watch all fluid... That includes medications, prescribed nutritional supplements, etc ... So I serve half cups of tea several times during the day, so she doesn't feel too deprived!...

We'd watch TV in the evening... We don't share the same tastes... I HATE soaps, Mum loves them... So we have some banter there... Mum goes to bed early... Does her night dialysis about 8.30pm, then watches TV in her room with her evening treat of some ice cream... Has to take Phosphate binders with that... Dairy products are high in phospherous, and that can make her very itchy... So I have the evenings to myself mostly... I realise that I'm a very lucky carer in that regard... I get to catch up with friends online, chat on the phone, write letters, and emails, etc... At about 10pm, I'll make her some tea, with some biscuits (sneaking additional calories into her!), and she's usually asleep by about 10.30pm...

I don't stay up too late... I'm a morning person... By this time I too am very tired... Sort out taking my own medication, have a coffee, and go to bed... Of course, as most carers will tell you, I sleep with one eye open,so to speak... I'm always listening out for Mum... I'm wary of her falling, and with the Parkinson's, her balance's poor.....

I'm not complaining... I love caring for Mum... I realise that I'm very lucky to have this time with her, and this closeness to her... So many people's mum's die suddenly, and they don't get this opportunity... No, it's not easy... I never expected it to be, but anything worthwhile's never easy... Yes, we have our squabbles, and Mum once said to me "I'm a cantankeras old boot!"... I replied with a wicked grin on my face, "Yes you are... But you're MY cantankeras old boot, and I love you!"....

I highly value the assistance, support and advice from Cathy and all at the Clondalkin Carers Centre... It's a lifeline... Another fantasic support structure for us is the local Community Gardai... They call in regularly for a coffee, and to check we're okay... I know I can call on them any time... Very reassuring....

Wishing all family carers out there all the very best in the world... You deserve it!!!!!....

May God bless and protect you all....

Carolyn M. Akintola...