All this evidence—physical and neurological examinations, psychiatric assessment, MRIs, blood and urine tests, her family history of the disease, and her obvious behavioural changes—and I was still telling myself that if we got her brain active again, she’d be as right as rain.
So what does one do after a diagnosis like that? It would be unlikely we would see any major effect or change in Mum immediately. It’s not like we can take any real steps to stop this happening, or start the process of curing or preventing. As a family we didn’t really talk much about it. Deep down we all kind of knew it was coming but now it was officially here none of us were really willing to acknowledge it or in fact discuss it. Sure there would be steps that we would need to take down the track, but with Alzheimer’s the future is so uncertain. No timelines, no recommended lifestyle or dietary changes—just as you were until you are no more. As much as I was still convinced she was suffering from an over-caring husband, my dad didn’t seem to acknowledge the diagnosis at all.
As we left the doctor’s rooms I seem to recall my sister and I being a little emotional. It wasn’t quite a ‘group hug’ scenario but we definitely stood around as a family and bonded in the moment. My brother made a comment about how we had just been told something we knew was coming anyway. He had verbalised it but the rest of us weren’t there yet.
My sister and brother both went back to work and I took my parents out for a coffee. Just your normal Tuesday morning.
4
Testing the waters
So what is dementia and what is Alzheimer’s? Is there a difference? Do people with Alzheimer’s always have dementia? Can you have dementia without Alzheimer’s? These are questions I am asked on a regular basis. I have to stop wearing that silly T-shirt I bought on my last trip to Bali that says ‘Alzheimer’s and dementia expert’ and a little icon of a thumbs-up under it.
So, what is dementia?
The first thing to note is that dementia is not a disease, it is a condition. In medical parlance, a ‘condition’ is a broad term that includes all diseases and disorders—so dementia is a collection of symptoms that are caused by diseases or disorders or injuries affecting the brain.
Some of the early symptoms of dementia include memory loss, confusion, changes in personality and behaviour, apathy and withdrawal, and losing the ability to perform everyday tasks.
There are many different forms of dementia, and each has its own causes. The most common types are Alzheimer’s disease (which accounts for 50–70 per cent of all dementia cases), vascular dementia, Parkinson’s disease, dementia with Lewy body disease, Frontotemporal dementia, Huntington’s disease, alcohol-related dementia and Creutzfeldt–Jakob’s disease.
Dementia can happen to anybody, but is more common after the age of 65—although it is important to note that dementia is not just a normal part of ageing.
Other medical conditions can also cause symptoms similar to dementia, such as stroke, depression, vitamin deficiencies, hormone disorders, alcoholism, infections, medication side effects or interactions, overmedication and brain tumours.
So, yes, you can have dementia without having Alzheimer’s.
What, then, is Alzheimer’s?
Alzheimer’s disease is named after the German physician, Alois Alzheimer, who first described it in 1906.
Alzheimer’s is a disease. It is an irreversible, progressive brain disorder that slowly destroys memory and thinking skills. The disease can be either sporadic or familial. Sporadic Alzheimer’s can affect adults at any age, but usually occurs after the age of 65, and is the most common form. Familial Alzheimer’s is a very rare genetic condition caused by a mutation in one of several genes. The presence of these genes means that the person will eventually develop Alzheimer’s, usually in their forties or fifties. This form of Alzheimer’s disease only affects an extremely small percentage of the Australian population—probably no more than 100 people at any given time.
During the very earliest stage of Alzheimer’s disease, people seem to be symptom free; research shows that damage to the brain can actually start a decade or more before memory and other cognitive problems appear. The damage initially appears to take place in the part of the brain that forms memories, and as more neurons die, additional parts of the brain are affected and they begin to shrink.
So, to answer another question. Dementia is actually the condition, and Alzheimer’s is the disease that causes the condition of dementia—which means that if you are diagnosed with Alzheimer’s, then you what you actually have is dementia caused by Alzheimer’s disease.
I think I’ve even cleared that up in my own mind now.
Having said this, a diagnosis of Alzheimer’s is never really conclusive until a post-death autopsy is performed on the brain—although current advances in brain scanning may soon change this.
Doctors can use a whole range of tests to determine if someone is likely to have Alzheimer’s. A complete physical and psychological assessment is undertaken to identify or rule out any other treatable disorders, such as depression or anxiety, that can mimic symptoms of dementia. These tests include blood and urine tests, as well as imaging tests such as X-rays, brain scans and MRIs. There are also cognitive tests to assess the person’s memory, problem-solving ability, numerical and counting skills, verbal and written comprehension, and their general ability to carry out activities of daily living.
If you are worried that you or someone you love may have Alzheimer’s, the best place to start is your local GP, who can evaluate the symptoms and refer the person onwards for more specialist assessment.
If you are like me and have that nagging voice in the back of your head that kind of wants to know if you’re getting Alzheimer’s, but doesn’t really want to know—but you think it might be handy to have some idea whether you might maybe at some point require further testing because you seem to be regularly walking into rooms and forgetting what you walked in there for … well, you might be happy to know there are also self-administered tests that you can perform in the comfort of your own home.
One such play-along-at-home test is the Self-Administered Gerocognitive Exam (SAGE), which is included at the back of this book (or you can download it from
I did version four of the test at home. Maybe those brain-training apps have been helping after all, as my score was in the 17–22 points category, which means I am normal, or to be more precise, ‘very likely to be normal’.
That sounds more like it.
5
Somebody hide the knives
Mum and Dad had always had the perfect marriage. They met while working together in a department store when Mum was sixteen and Dad was twenty-one. They were married and had their first child, my brother, Peter, by the time Mum was twenty.
They complemented each other perfectly. Dad was the easygoing, never-take-anything-seriously kind of guy, and Mum was the organiser who would always have to pull him into line for goofing around. We spent our childhood laughing at Dad’s antics, only to be chastised by Mum; ‘Don’t encourage him!’ she would say.
One of my funniest memories—and also strangest, thinking back on it—was spending many mornings before school searching the house for Mum’s false teeth. Having full top and bottom dentures from an early age, Mum would take her teeth out at night and leave them in a glass by the bathroom sink. Dad would wake early for work and, as a morning parting gift to us kids, would hide Mum’s dentures somewhere around the house. My poor mum: not only did she spend most mornings trying to get three kids out of bed, clothed, fed and off to school, but she had to do it all while frantically searching high and low for her missing teeth. There were no mobile phones back
then, and with Dad on building sites most of the day, she couldn’t just call him to uncover their mystery location. So if we couldn’t find them, Mum would have to drive us to school toothless, cursing my father the whole time, in a lispy, gummy kind of way. He outdid himself one morning when, after a few laps of the house with no success, I walked into Mum and Dad’s bedroom to find her teeth swinging from the ceiling light on a piece of string. Even Mum smiled that day (in a lispy, gummy kind of way).
Aside from the usual shenanigans, our family was a very conventional working-class, white Australian household, except it was matriarchal to its core. What Mum said stood, and Dad would always make sure we didn’t do anything to ‘upset your mother’. Whenever there were any problems within the extended family, Mum and Dad were the ‘go-tos’—the ones everyone sought counsel from. Even to this day, their relationship fills me with wonder and envy.
Dad was very skilful, athletic and handy, but Mum was the creative and artistic one. She always made our clothes—although in hindsight we could have done without that on many occasions. She baked to perfection, and was also very crafty. Once we were all at high school and a little more independent, she joined all sorts of clubs and took all kinds of classes to advance her skills. Eventually she started competing in art shows—cake decorating, floral art, china painting, you name it—and the family house was soon filled with blue ribbons and plaques from her successes.
It seemed so cruel that this disease hit someone who had such an active and creative brain, and who at the age of 65 was still relatively young. But as with so many illnesses, Alzheimer’s doesn’t discriminate.
A year or two after the initial diagnosis, Mum started to deteriorate into a state we were all dreading. She stopped reading the morning paper, stopped cooking, stopped showing any signs of independence at all. I would frequently get mad at her for not being able to do things—I guess I was still struggling to accept the reality of her disease. Every couple of weeks I would paint her nails, but trying to get her to hold her fingers in the right position was excruciatingly frustrating. There were times I would yank her fingers so hard I was worried I was hurting her—but even that wasn’t enough for her to ‘snap out of it’ and follow what I thought were pretty basic requests, such as ‘please keep your hands still’. I’m quite a patient person, but I found myself losing it on more than one occasion. It was a bit like trying to talk to someone who doesn’t understand English, when you think that if you talk s l o w e r and LOUDER, they will eventually grasp what you are trying to say. How she failed to understand even the most simple instructions was beyond me.
Dad was incredible. He took on the role of carer like a duck to water, taking care of the washing, cooking and other household duties. I still struggle with these routine tasks on a daily basis. At the age of over 70, it was a lot of work for him, both physically and mentally. Luckily my husband and I lived nearby, so we could help him out—but being a traditional Aussie older-generation male, many of our offers of assistance would be met with a ‘We’ll be right’ from Dad.
Caring for Mum became increasingly difficult, however. She became incontinent, and wouldn’t eat unless I was there to feed her. We had to install ramps over the steps to ensure she didn’t trip, and also had to keep all the doors locked and the knives hidden. I was feeding her dinner one evening and she turned to me, looked into my eyes and said as clear as day: ‘I am going to kill you dead with a knife.’ I nearly corrected her, saying that if she had killed me with said knife, then I would technically be dead anyway, but went with my better judgement instead and ignored the comment. It was quite ironic, really, as Mum was the most passive, non-confrontational and non-violent person I have ever known.
She would also constantly pace around the house talking to herself. It was fascinating in a way to listen to those conversations. Many of them seemed to be a dialogue between herself and her sister, who had by then died the year before, but I was always a bit worried I might be privy to information that I either didn’t want to know, or wasn’t meant to know.
We started taking Mum for walks around the neighbourhood—if only to save the carpet she was wearing out around the house. I swear she could have powered a nuclear power station with the energy she exerted walking constantly. It was like watching a baby walk for the first time: we’d stay about three paces behind her in case she veered off in the wrong direction, but she didn’t want us to hold her hand or direct where she was going. How odd it must have looked for the neighbours to see Mum walk past—then five seconds later Dad, me, my husband and two dogs in tow, over and over again until it started to get dark, when we would take her inside, in case she fell.
The doctors had Mum on various medications. We all know there is no magic pill that will make this disease go away, or even restore ‘normal’ functioning. Research has come a long way even since Mum was diagnosed, and we all hope that a cure for Alzheimer’s could be just around the corner. Given my family history, I for one am counting on it.
One of the tablets Mum was taking worked to slow down the disease, but over time she became less receptive to its specific effects and would have to be switched to another medication. Mum was also crying a lot of the time, so she was prescribed antidepressants to ease her distress.
We all knew Mum was a bit of a crier, but this was different. These seemed to be tears of sadness and frustration. Who knows what she was feeling and how much she understood or comprehended about her condition. And it wasn’t all out sobbing, more just a constant flow of tears which was very distressing to witness. The antidepressants ultimately worked but with that came the dulling of most of her personality. Not exactly a win either way for us, but for her? Who knows.
Besides antidepressants, some other drugs that are commonly prescribed to minimise the agitation and depression that can present in Alzheimer’s are antipsychotics, mood stabilisers, anxiety-relieving drugs, cholinergics and anticonvulsant drugs. Some of the side effects of certain medications, or combinations of medications, can outweigh their usefulness, so getting the right balance can be difficult.
Numerous herbal remedies and dietary supplements are also marketed as brain boosters or memory enhancers, but there is little scientific evidence to support their effectiveness. They can also interfere with prescribed medications, so there are legitimate concerns about their use.
Having spent so much time in a dementia ward, it is amazing how Alzheimer’s presents differently in everyone. It’s a hard task to get the medications just right to make patients comfortable, and at the same time manage their side effects.
Mum didn’t experience some of the more challenging side effects—whether that was because her medications suited her, or whether certain personalities just present differently, we really don’t know. Some families in the dementia ward had a truly horrible time trying to manage their loved ones, so as frustrating as it was to see Mum in a semiconscious state a lot of the time, we figured that in some ways, it could’ve been worse.
Some of the more manageable behaviours I have witnessed are anxiety, depression, wandering, fidgeting, shadowing (where a person follows another around at a very close proximity), repetitive behaviour, shouting and screaming, hoarding of other people’s belongings and loss of inhibitions. But at the extreme end of the spectrum you will see aggression and violence, both verbal and physical, illusions, hallucinations and psychotic episodes.
6
Everything must go!
We started trying to convince Dad that it would be better for him and Mum to sell the house and move into a retirement village, one that had a nurse onsite and support around the clock. Understandably, Dad hated the idea—his world was unravelling at a rapid rate and he was trying to hold on to what he could. He and Mum had lived in that house for over 50 years—a house in which they had raised three children, five grandchildren and three dogs. You couldn’t open a cupboard in the spare room without a memory falling out and hitting you on the head, so Dad was determined that he and Mum woul
d stay in their own home as long as they could.
One morning, Dad rang to say that Mum wasn’t right and I should probably come over. When I arrived she was sitting in her usual chair at the kitchen table. The morningnewspaper was open in front of her—not that she was capable of actually reading anymore. For as long as I could remember, Mum couldn’t function in the morning without toast, tea and a read of the paper, so it was more of a routine thing that Dad was continuing. There were a few pieces of uneaten toast sitting on a plate. When I walked in, she didn’t look up at me—instead her head was down and she seemed to be leaning off the chair to the right. Dad said she got up okay that morning, but while she was eating her breakfast, she slowly started to slump over to one side. Her pulse was normal and she didn’t feel hot, but to be on the safe side we decided to load her into the car and take her to hospital, to get her checked out.
When we arrived they popped her onto a gurney and positioned us in a cubicle while we waited for a doctor. Mum didn’t look like she was in any pain, but seemed a bit more disoriented than usual. When the doctor arrived, he did all the standard tests—blood pressure, temperature and a bit of poking and prodding—but nothing was jumping out at him. He then asked Mum to perform a series of simple tests to rule out stroke. His first request was to raise her right arm. Nothing. The doctor looked at me puzzled.
‘She has Alzheimer’s,’ I offered.
He then asked her to raise her left arm. Again nothing. Another puzzled look.
‘She has Alzheimer’s,’ I repeated, just in case he hadn’t heard me.
He then asked Mum to stick out her tongue. This time he didn’t even have to look at me as I jumped in rather loudly, ‘She still has Alzheimer’s!’
He turned around and patiently explained it would be hard to get an accurate diagnosis if Mum couldn’t perform a basic task. Now clearly my medical expertise doesn’t extend much beyond taking a pulse and feeling a forehead, but I did know that Mum wasn’t going to respond to any of these requests, as necessary as they were. Of course the doctor needed to rule out other more sinister causes for Mum’s turn—but as two of the tell-tale signs for a stroke are disorientation and difficulty speaking or understanding, this could take a while. Given that the doctor seemed to me at the time like he didn’t understand my interjections, I had to stop myself from suggesting that maybe he should be conducting these tests on himself. I didn’t. Instead I calmly worked with Mum on getting her to stick out her tongue and perform a few simple actions that were required.
Not Right In The Head Page 3
