Not Right In The Head

by Michelle Wyatt

  ‘Not sure, exactly …’

  ‘Do you know how tall she is?’

  ‘Won’t she be sitting down?’

  ‘Maybe it’s best that you just come to a showroom and we can look at suitable models.’

  ‘Okay then’. I think I may have underestimated this.

  So off I went, down to the wheelchair showroom, with a bit more research under my belt—including my mum’s height and weight.

  Riding in a wheelchair and using a cash register—they were the two things that fascinated me as a kid, and I’d always had a yearning to try both. I worked as a checkout chick in my late teens, so managed to tick the cash register box early on, but had never actually sat in a wheelchair. Of course I know that being confined to one isn’t a barrel of laughs, but I’d always thought it would be rather fun whizzing around on four wheels, if just for a minute.

  I wandered around the showroom, waiting for the right moment. As the only salesperson on the floor disappeared through double doors, my door of opportunity swung open. I lowered myself into a speedy-looking model, keen for a quick spin. The seat was comfy, my feet were placed perfectly on the little footrests, my hands ready on the wheel hoops, and off I went. I rolled forwards a little, then tried to turn left, but got my fingers caught in the wheel hoop and jammed my foot into the model parked next to me. I backed that baby up and tried again, this time pulling out unscathed, and started up the aisle at a snail’s pace, in a kind of zig-zaggy way. It’s not as easy as it looks, and by the end of the aisle my arms were exhausted. Let’s just say I developed a new-found respect for people who manage to get themselves from point A to point B in a wheelchair.

  Then from behind me a voice asked, ‘Can I help you?’ Ahh, the old ‘Second Salesperson on the Showroom Floor’ trick, hey? That was my cue to get out of the wheelchair, but with those footrests, there is no graceful way of doing it. I just kind of stumbled forward, sending the wheelchair backwards, straight into the legs of the salesperson behind me.

  Off to a good start then.

  I explained I was after a wheelchair for my mother—one with a modular, lightweight aluminium frame and attendant brakes. I was very proud of my new knowledge of wheelchairs, until the questions started coming thick and fast again.

  Do you need swing-away, flip-up and/or removable footrests? Do you need swing-away armrests? Solid tyres or pneumatic wheels? Anti-tip bars? Adjustable castors, wheel hoops? Rear wheel locks? Quick-release rear wheels? Seat width, seat length, seat height? Backrest height, backrest angle? Front seat length, front seat height? Footrest length, footplate angle? Storage pocket?

  Ahh, I know what a storage pocket is, and one of those would be handy. As for everything else above … um, I think so?

  Over an hour later, we had an appropriate model selected. But wait, there’s more.

  What kind of accessories do you want? Standard cushion, air cushion, pressure-distribution cushion, contoured cushion, comfort heat and moisture-distribution cushion? Do you want a cushion with smart cells? What about sheepskin covers for the seat cushion and arm rests?

  Holy smokes, Batman! I just want Mum to sit in a wheelchair and be comfortable. Is that too much to ask?

  ‘And what colour were you thinking—and do you want a powder-coat finish, or a gloss paint?’

  Kill me now, please.

  So I walked out 90 minutes later with a brand-spanking-new red, lightweight wheelchair with solid tyres, removable footrests, padded armrests, contoured cushion and attendant brakes. With a storage pocket. Woo hoo! As I drove home with that bad boy loaded into my hatchback, I couldn’t help looking in my rear-vision mirror and admiring my new purchase—folded up and slightly obscuring my view through the back of the car.

  The idea was to give it to Mum for Christmas as a present from us three kids, so I thought it might be nice to buy a big red bow to put on it, as wrapping it could prove even trickier than actually buying it. This was the week before Christmas, so I did have a bit of shopping to do after I left the ‘Nuthin’ but Wheelchairs’ shop. As I drove around my local shopping centre, parking spots were proving a little elusive. Up and down the car park aisles I drove, feeling the Christmas spirit slowly draining with every horn tooted and the screech of every wheel. I spied an empty spot, started to pull into it, then realised it was a disabled parking space.

  As I reversed back out, a glint of shiny red paint caught my eye. I sat for a good five minutes looking at that parking spot, looking at my new purchase in the rear-vision mirror, looking at that parking spot, looking in the rear-vision mirror. The wheelchair was in full view of everyone, so if I did park there nobody would bat an eyelid. How would it be any different to those mums who keep prams in their cars years after their children have outgrown them, just so they can park in the ‘parking with prams’ spots? And I was only going to run in and grab a ribbon—and maybe a few other items, seeing as I found such a good parking spot. Sure, I wasn’t disabled, and didn’t have a disabled sticker on my car, but I did have a wheelchair crammed into my hatchback in full view …

  Finally honesty prevailed, and I slowly joined the line of waiting cars, tooting and screeching my way around that car park. Bah, humbug!

  19

  Signs—sealed and delivered

  It seemed like the longest time that Mum was just existing comfortably in her own little world in the nursing home. One of the hardest things about having a loved one with Alzheimer’s is that the disease affects everyone differently, and its progression, in terms of a time line, can be difficult to predict.

  I kept waiting for obvious signs of decline—major issues that would indicate where she was at in terms of the disease, but nothing really happened. I did some research into the different stages of Alzheimer’s, looking for some kind of reliable guide to tell me what to expect and when, so I could be fully equipped with it. Every time Dad threw something new about Mum’s behaviour into a conversation I would Google for hours to see if it was a significant signpost of the disease. Most research charts the progression of Alzheimer’s disease using either a three-stage model, or a seven-stage one.

  THREE-STAGE MODEL

  For those who like their information condensed, this is the three-stage disease model.

  Stage one: Mild/early

  The first stage can last anywhere from two to four years. There is frequent memory loss, particularly of recent conversations and events. The person may ask repeated questions, and may have some problems expressing and understanding language. They may need reminders for daily activities, and have mild coordination problems, making writing, driving and using objects difficult. Depression and apathy can occur, accompanied by mood swings.

  Stage two: Moderate/middle

  In the second stage, which can last between two and ten years, the signs become more apparent, and the person can no longer cover up their problems. There is pervasive and persistent memory loss, including of their own personal history, and the person may be unable to recognise friends and family. Their speech may be rambling, their reasoning unusual, and they may be confused about current events, what time it is, or where they are. They are more likely to become lost in familiar settings. Sleep disturbances or delusions are common, and the person may experience changes in mood and behaviour, such as aggression and uninhibited behaviour, which can be aggravated by stress and change. Mobility and coordination are affected by slowness, rigidity and tremors. The person needs structure and reminders, and assistance with activities of daily living.

  Stage three: Severe/late

  In this stage, which may last from one to three years or more, the person will need round-the-clock intensive support and care. They are generally incapacitated, with severe to total loss of verbal skills, and are unable to care for themselves. The person is confused about the past and present, and unable to remember, communicate, or process information. There may be problems with swallowing, incontinence and illness, and extreme problems with mood, behaviour, hallucinations and delirium. Fall
s are possible, and immobility likely.

  SEVEN-STAGE MODEL

  For those who like a bit more meat on their bones, here are the seven stages of Alzheimer’s.

  Stage one: No impairment

  During this stage, Alzheimer’s disease is not detectable and no memory problems or other symptoms of dementia are evident.

  Stage two: Very mild decline/normal forgetfulness

  The patient may notice minor memory problems or lose things around the house, although not to the point where the memory loss can easily be distinguished from normal age-related memory loss, as about half of all people over 65 begin noticing problems in concentration and word recall. The person will still do well on memory tests, and the disease is unlikely to be detected by physicians or loved ones.

  Stage three: Mild decline/mild cognitive impairment

  This stage can last from two to seven years. The person’s friends and family may begin to notice memory and cognitive problems; the person may frequently lose personal possessions, including valuables. As the changes are subtle, the person may consciously or subconsciously try to cover up for their problems. A key feature is difficulty finding the right word during conversations, remembering names of new acquaintances, and difficulty planning and organising, which may affect life at home and work. Depression and other changes in mood may also occur. Physicians will be able to detect impaired cognitive function on memory and cognitive tests.

  Stage four: Moderate decline/mild Alzheimer’s

  During this stage, which may last up to two years, clear-cut symptoms are apparent. Most people in this stage still know themselves and family members. They may have difficulty carrying out sequential tasks, including cooking, driving, ordering food at restaurants and shopping. They often withdraw from social situations and become defensive about their condition. They have difficulty with simple arithmetic, may forget details about their life history, have poor short-term memory (may not recall what they ate for breakfast, for example), and are unable to manage their finances and pay bills.

  Stage five: Moderately severe decline/early dementia

  The average duration of this stage is about eighteen months. During this stage, the decline is more severe. Patients start needing help with many daily activities such as eating and dressing appropriately. They experience a severe decline in numerical abilities and judgement skills, which can leave them vulnerable to safety issues. They may experience significant confusion, and be unable to recall simple details about themselves, such as their own phone number.

  On the other hand, patients in stage five maintain a modicum of functionality. They often can still bathe and toilet independently. They also usually still know their family members and some detail about their personal history, especially their childhood and youth.

  Stage six: Severe decline/middle dementia

  The average duration of this stage is about two and a half years. Patients need constant supervision, and frequently require professional care. They lack an awareness of present events, may be confused about or unaware of their environment and surroundings, and cannot accurately remember the past, including most details of their personal history. The person is unable to recognise faces, except those of closest friends and relatives. They start to communicate pleasure and pain via behaviour; major personality changes are common. Agitation and hallucinations often present in the late afternoon or evening, and suspicion of family members is common. The person will need assistance with activities of daily living, such as toileting and bathing, due to loss of bowel and bladder control. Wandering is also common.

  Stage seven: Very severe decline

  The duration of this stage is impacted by the patient’s quality of care, but the average length is one to two and a half years. Because Alzheimer’s disease is a terminal illness, patients in stage seven are nearing death. They lose the ability to respond to their environment or communicate. They may still be able to utter words and phrases, but have no insight into their condition, and require total support for all functions of daily living. In the final stages, patients may lose their ability to swallow.

  So, these were my guides to the progression of Mum’s disease—although some of the stages in these two models seemed a bit nonsensical (and downright alarming) to me.

  For instance, stage one of the first model, where no signs of Alzheimer’s are present, would suggest we are all in stage one of Alzheimer’s!

  With the second model, one of the possible symptoms of stage four is ‘an impaired ability to perform challenging mental arithmetic, for example, to count backwards from 75 by 7s’. Umm, that’s me—really freaking out now.

  And here’s another symptom of stage four: ‘decreased capacity to perform complex tasks, such as planning dinner for guests, paying bills and managing finances’. And there goes my husband!

  You can see from those simple guidelines how hard it can be to accurately nail down what stage of Alzheimer’s a person may actually be in, as well as a survival time line. Mum was still living in the family home right up to stage six of the second model, and then seemingly sat at stage seven for about six years.

  I guess the reason I had such a morbid fascination with trying to lock down a time line was that we couldn’t plan our future with Mum existing in this land of limbo. Every trip we tried to plan to visit my husband’s family in the US was always reliant on Mum’s health at the time—and even then I felt stressed about being so far away from her, and guilty for leaving Dad. My sister owns a travel agency and was overseas quite a bit, so we always tried to coordinate it so at least one of us would be in the country at any given time. I found it harder and harder to talk about events in the future, and became consumed by Mum’s health and how much longer she would be around. We avoided talking about upcoming celebrations around Dad, as most of the time he wouldn’t attend, and we didn’t want him to feel left out.

  While the symptoms of Alzheimer’s disease clearly worsen over time, research shows that the rate of progression varies from patient to patient. On average a person with officially diagnosed Alzheimer’s disease lives four to eight years after diagnosis—but can live for up to twenty years, depending on a wide range of factors. There is no way Mum would have survived the disease for thirteen years if it hadn’t been for Dad’s ongoing hands-on care.

  For the most part, Mum had no major health issues in the nursing home, aside from the occasional cold and urinary tract infection, or UTI for short. UTIs are quite common in nursing homes, particularly in Alzheimer patients, and are often caused by poor hygiene, or the bladder not emptying completely. Many dementia and Alzheimer patients become incontinent and can sit for hours before their pads are changed, so these infections are sometimes hard to avoid—especially as they can’t communicate, or convey their level of pain or discomfort; they sit and suffer in silence. And to make matters worse, one symptom of an advanced urinary tract infection is sudden confusion or delirium—but confusion is status quo with most dementia patients, so who is going to notice that Beryl on level two is acting strange? Lucky for us, Dad was devotedly on hand to notice any drastic changes in Mum’s behaviour, so when she did succumb to a UTI—and she did have quite a few during her time there—these were treated in a timely manner.

  Chest infections were another recurring health issue with Mum. These can take a more serious nature in Alzheimer patients in the later stages of the disease, if they have lost their ability to swallow adequately—but once again, Dad was always on the case, and any sign of a cough or gurgle was jumped on quick smart. The staff, too, were always very attentive with Mum—how could they not be, with Dad around?

  One Thursday evening Dad arrived at our house for the traditional fish and chip sleepover. From his bag he produced a document that the nursing home manager had given him. It was a patient care information sheet; it was time to update Mum’s records and ensure all her details were accurate, so we filled in all the boxes, just as we had every year before.

  When we got to the en
d of the document, I discovered an additional page stapled at the back, which I hadn’t seen before.

  It was a DNR form.

  A ‘Do Not Resuscitate’ form.

  I know these forms are pretty commonplace when a loved one has been diagnosed with a terminal disease, and my rational side knew it was inevitable that we’d one day have to fill out one of these forms, but part of me still didn’t want to acknowledge that Mum did indeed have a terminal illness.

  A DNR is a medical directive issued by a doctor, at the request of a patient who is at the end of their life, or after consultation with the patient’s next of kin or legal guardian. It basically instructs the medical staff within a hospital or care facility not to perform cardiopulmonary resuscitation (CPR) if the patient suffers a cardiac arrest, or if their breathing stops. Instead, the patient is left to die naturally, with measures taken to promote comfort during the dying process.

  Pretty confronting stuff to be making decisions about. Mum was at some point going succumb to this horrible disease—but clearly, in the event of a heart attack, we would want her to still live, wouldn’t we?

  I read over this form in my head, trying to digest it all, especially the boxes where we needed to tick yes or no indicating whether to perform CPR.

  Dad was reading over my shoulder and said, ‘Just say, Do Not Resuscitate.’

  Now, I knew that it was Dad’s voice because a) I recognised it, and b) he was the only one in the room. But why would my father not want to have his wife of 55 years, who he clearly loved more than life itself, resuscitated? I turned around and looked at him, thinking he was a bit confused.

  ‘You mean, do perform CPR,’ I clarified.

  ‘No—do not resuscitate,’ he repeated.

  At this point I was pretty sure he hadn’t quite wrapped his head around all the terminology: too many letters in all of this DNR and CPR talk—obviously nothing was making sense to him.

  ‘So you are saying that if Mum suffers a heart attack, you don’t want her to be resuscitated?’ I asked, getting genuinely concerned.