The tests finally showed that Mum’s overall physical health was stable, but that it would be best for her to go directly from the hospital into full-time nursing home care. I immediately rang the nursing home manager, and as luck would have it, they had a room available. We were so happy. Ironic, isn’t it? Being happy that your mother is being admitted into a nursing home—or even more bizarre, a dementia ward?
We were so focused on getting Mum into the nursing home that we went into practical mode, thinking how it would relieve Dad of the burden of taking care of Mum every single minute of every day. It would be the best place for her, and their unit in the retirement village was just a five-minute walk and four-digit passcode away. (A little tip: if you are ever trapped inside a nursing home, and don’t know the four-digit passcode, try the postcode.)
We didn’t really stop to think what a huge impact it would have on Dad—that he was about to grieve the loss of his life partner. All of a sudden the woman he had woken up with for over 50 years wasn’t going to be beside him every day. She had been his whole life, and even more so since she became ill. He had never functioned alone, had never slept alone and had probably never anticipated living alone.
8
Hopelessly devoted
I know there isn’t much to laugh about when it comes to Alzheimer’s. It is a horrible disease that robs sufferers of their faculties, and more importantly their dignity. It killed me to see my mother, who was once so loving, vibrant, talented and entertaining, sit lifeless in a chair with no idea where she was, or who any of us were. Unable to walk, talk or feed herself. I couldn’t help thinking there was no way she would have wanted to continue existing in that state, but therein lies another problem with this disease: there was no way of knowing what was going on in her mind. Did she know where she was and who we were, but just couldn’t communicate that to us? The ‘nothingness’ in her eyes made us believe she had no idea at all, so what was ultimately best for her was hard to know. Watching a parent’s decline is devastating. You go back and forth from wanting them to ‘hang in there’ and fight, to wanting them to be free of the suffering. I’m actually not sure which scenario I was hoping for. Can I say neither?
As hard as it was for us to see Mum like that, it must have been incomprehensible for Dad to deal with, day in and day out. His life changed dramatically when she was admitted to the nursing home, and if we thought he might now gain a little independence and spend just a little time doing something for himself, we were wrong. As the true devoted husband he had been for 52 years, he sat next to my mother, holding her hand, from 8 a.m. until 8.30 p.m., every single day of the year from the day she checked in—or should I say checked out. It goes without saying that we were in awe of his amazing love and care for Mum, but his devotion meant he also missed some important milestones in his children’s and grandchildren’s lives. A few months after Mum moved into the nursing home, I gave birth to my first and only child—a son. My sister insisted that Dad come to the hospital that night and meet his new grandson; sensing his hesitation, she just turned up at the nursing home and herded him into her car. That night in the hospital was an emotional one for everyone. Dad had very mixed feelings, both of overwhelming joy, but also deep sadness that Mum couldn’t enjoy the moment she had looked forward to for so long. Birthday parties, family functions and Easter egg hunts came and went without Dad around. It was very difficult to explain to my son in those early years why Papa couldn’t come along to Grandparents Day at his day care centre or school.
So as well as losing our mother, in a way we felt we had lost our father too. Of course we were infinitely grateful for what he did for Mum—that kind of loyalty and dedication is not found very often. I’d already lost my mother–daughter relationship with Mum years before, and it had taken me a long time to break the habit of reaching for the phone to tell Mum when anything good or bad happened in my life, but once her illness really took hold, Dad was all business and totally preoccupied with her care. He wasn’t exactly someone you could whine to when your day was a bit shitty—god knows he had enough on his plate.
Even to this day I’m amazed how quickly Dad adapted to caring for himself. Every night he would cook up a meal of meat and two vegies. He did his own washing, paid his bills and kept the unit in a neat and tidy state. If I fell off the perch tomorrow, within a few days our house would probably look like it had been hit by a bomb and my son would be living on a steady diet of mac and cheese—but Dad had it all sorted, and after spending all day looking after Mum would arrive home with enough will and energy to look after himself.
I rang him every night around 9 p.m. to see how Mum was and how his day had been. By then he would have eaten his dinner and had time to sit down and relax with his second glass of wine. The nightly phone call usually went like this.
‘Hi, Dad, how are you?’
‘Still here, which is a good start.’
‘How was Mum today?’
‘She was good. She did everything she had to do, ate her meals, dozed on and off throughout the day, and was sound asleep by the time I left tonight.’
‘How was your day?’
‘Don’t get me started …’ And he’d then give me a blow-by-blow account of every single thing that had gone wrong during the day: Mum’s food was cold, they were late taking her to the toilet, they dressed her in the wrong shirt, she was given her tablets fifteen minutes late, they didn’t ask if she wanted to go on the bus excursion, the concert in the living area was too loud for her, the woman at her lunch table coughed all the way through the meal …
A nursing home is not a hotel. I wish I had a dollar for every time I used that phrase in conversation with my dad during those last few years. If it was a full-service hotel, I would definitely be having a word to the manager, but it wasn’t. It was a nursing home, full to the brim with over a hundred low- to high-care patients requiring round-the-clock attention, staffed by fully qualified nurses and carers doing an amazing job. And Mum was one of the lucky ones who had a loved one on hand to keep her company and help with her care. Dad took up the challenge with gusto, and we were very grateful that he did, but I can’t begin to imagine how irritating it must’ve been for the carers to have someone sitting there all day, day in, day out, watching and critiquing their every move. In Dad’s eyes, Mum was the most important resident in that facility, and if she wasn’t treated like the Queen of England, there’d be trouble. Not only did it take a toll on him, but the carers from time to time would get a little cranky. He didn’t seem to pick up on the signs though. Each morning he would arrive before Mum was barely awake and out of bed. If her breakfast wasn’t brought in by 8.30 a.m., he was on the warpath. He would stand at the door, wait for the next unlucky carer to walk past and give them a serve. After a while, to avoid an unwarranted earful, the carers would stop walking past Mum’s room—which would get him even madder.
We tried to put a ‘curfew’ on Dad, where he wasn’t allowed in the building before a certain hour of the morning, making sure that the directive came from the nursing home and not us—you know, the whole ‘good cop, bad cop’ theory. It started off at no visits before 10 a.m. We figured this would give him enough time to get up at a leisurely hour, potter around and then meander over to the nursing home. That worked for about a week. It was like we’d enforced a New Year’s resolution on him—it was bound to fail. There was nowhere else he wanted to be, and keeping him away just made him more scrutinising of the care she received when he wasn’t there: they hadn’t given her the right breakfast; she wasn’t sitting in the right chair by the right window. God help the staff on the mornings they got sidetracked and she was still tucked up in bed when Dad arrived.
So 10 a.m. became 9.45 a.m., then 9.30 a.m.—and before we knew it, we were right back where we started at 8 a.m.
But it wasn’t just the ‘service’ at the nursing home that got his blood boiling. The residents were also a constant source of frustration. Spending so much time visiting Mum and
listening to Dad’s stories, we began to care about and empathise with the other patients in the ward, and the lives they too had lost, so I would enquire about certain residents and how they were doing.
The nightly phone conversations would continue.
‘Everyone okay in there today?’ I’d ask.
‘I’m telling you, love, some of them are not right in the bloody head!’ he’d grumble.
‘No, Dad,’ I’d point out, ‘they’re not right in the head—that’s why they’re in a dementia ward.’
There it is in a nutshell. Each and every patient in the dementia ward wasn’t ‘right in the head’, and none of them were able to function in a ‘normal’ environment—including Mum, which Dad didn’t want to acknowledge. But sad as it all was, I had to admit that some of his stories were highly entertaining. I just needed to sit back and allow myself a moment to smile.
9
The elephant in the room
They say the best thing about Alzheimer’s is forgetting you have it. What’s the other best thing about having Alzheimer’s? Opening your own Christmas presents. Even as I watched my mother slowly deteriorate, I could see the funny side of these jokes.
Maybe because the words Alzheimer’s and dementia have been forefront in my mind for so long, I’m acutely aware of how many times people joke about having the disease whenever they forget what they were saying, or lose track of what they were about to do. ‘Must be the Alzheimer’s,’ they’ll quip.
It doesn’t bother me when people say that, but those who know my family history almost always feel the need to apologise. I remember having a discussion with a colleague at work a few years ago about his ‘great idea’ that I had actually suggested to him the day before. When I reminded him that the idea had been on the table the day before, he retorted, ‘I think you must have Alzheimer’s.’ I left the room—not because the comment offended me, but because he was a dick and further discussion would have been fruitless. In his mind, he had touched on a nerve, and he then spent the entire day apologising for his insensitive remark. I let him wallow in his regret—you take what you can get.
Alzheimer’s and dementia seem to be the fallback joke for forgetfulness. I’m pretty sure people aren’t throwing out ‘Must be the cancer’ comments on a regular basis. But would anyone who makes such comments in jest—and I’m as guilty as the next guy (if only I could remember his name!)—be so jovial about it if they knew they would indeed fall victim to Alzheimer’s or dementia at some point in their life?
Would you want to know?
There are cognitive written tests that can indicate whether you potentially have an underlying problem with your memory—some of which I referred to earlier—as well as tests to determine whether you carry the gene, and your risk of developing the disease. To know or not to know? Either way, it is such a complex dilemma.
On one hand, there is the advantage of foresight in being able to take steps for the future—to put in place a plan for your family and friends in dealing with your decline. But in many cases, this decline can be a very slow and gradual one. Unlike other life-threatening illnesses, Alzheimer’s has no ‘expected’ timeline, apart from certain physical and mental signposts indicating the progression the disease.
My mother assumed she would get Alzheimer’s, given that her own mother and sister had succumbed to it at a relatively young age—and she was very adamant that when it did happen, we should ‘lock her up and throw away the key’. Whenever Mum would say that, we’d joke that we wouldn’t need to throw away the key, as she wouldn’t be able to remember where we put it. Oh yes, we really were hilarious.
Personally, at this point in time, I don’t think I would want to know if I am likely to end up with Alzheimer’s. Part of me feels like I’d be buying into a self-fulfilling prophecy. Knowing what lies ahead would probably consume me, and send me down the path quicker than might have normally happened. There is no scientific or logical reasoning behind this thought, but I know how my brain works. I would be self-checking every word I spoke—or didn’t speak. Every name I couldn’t recall, every item I forgot to get at the supermarket. Recently, for example, I drove home from the shopping mall and turned down every wrong street. I knew it was because I was distracted (I should have been at home writing this book, not shopping for things I didn’t need!), and not because my brain was starting to succumb to a disease that I may not even get—but the seed of doubt was there. I find myself questioning such incidents on a regular basis, even though my family history may not even be physically relevant.
How do you receive such a diagnosis and not let it consume you? Is it selfish to not want to know? Should you use that information to help pave the way for your family’s future without you? And if you did find out, would you tell your family and friends?
Putting the emotional toll aside, that kind of information on a medical database somewhere could potentially have huge ramifications. Would your employer be interested in knowing that at some point down the track you could start to make mistakes that might impact the business? Would a health insurer or life-insurance company classify it as a ‘pre-existing condition’?
In Australia you are required by law to inform your local licensing authority of any medical condition that may affect your ability to drive. Dementia is one of those conditions. Before a valid licence is issued, you need to be assessed by a doctor and, based on the results, the licensing authority will decide whether you can continue to drive for the next twelve months, after which time you need to be reassessed. They can also place certain restrictions on your licence, such as only driving within a certain vicinity of home, at certain times, or below a particular speed limit. If you cause an accident and haven’t disclosed a diagnosis of Alzheimer’s or dementia, you can be charged with a driving offence, or even sued—and your insurance company is unlikely to cover you for the accident.
The Alzheimer’s Australia website lists several signs that dementia may be affecting a person’s driving—obvious ones to do with vision, hearing, reaction time and coordination. Then it asks questions like ‘Are they able to stay in the correct lane? Can they read a road map and follow detour notes? Has their mood changed when driving, from calm to angry or aggressive?’ Judging from those last few, my husband is further down this Alzheimer’s track than I am. Of course I am joking (except on the road map one—and then on some days the calm to angry one). There is quite a lot of information about how Alzheimer’s and dementia can affect certain legal situations; if you are in doubt about yourself or a loved one, it is worth a search online. There are links in the back of this book but as laws differ from state to state it is advisable to download your local rules and regulations.
So, knowing you are likely to succumb to this disease is a double-edged sword. It’s certainly not something you would post on a dating website.
This may be the appropriate time to lay some statistics down. Warning: these figures could cause you to run screaming from the room in a ‘Holy shit, we are all doomed!’ kind of way. But keep in mind there is wonderful research being done around Alzheimer’s and dementia—so a cure could be within our generation’s lifetime.
These statistics from Alzheimer’s Australia were current to February 2016.
• Alzheimer’s disease is the most common form of dementia, affecting up to 70 per cent of all people with dementia.
• There are no official numbers, as many people live with dementia and are not diagnosed—especially when it comes to people under the age of 65.
• Worldwide, there are more than 46.8 million people diagnosed with dementia today and 131.5 million predicted by 2050.
• In Australia, 353,800 people are estimated to be living with dementia. This figure is expected to rise to 400,000 in less than five years. Given that these figures are based on people with an ‘official’ diagnosis, the true number could be significantly higher—especially in those under the age of 65.
• Each week in Australia, there are more than 1800 new
cases of dementia (approximately one person every six minutes).
• Dementia affects almost three in ten people over the age of 85; and almost one in ten people over the age of 65; ‘younger-onset dementia’ affects about 25,100 Australians under the age of 65.
• More than 50 per cent of residents in Australian government–subsidised aged care facilities have dementia.
• An estimated 1.2 million people are involved in the care of a person with dementia.
• Dementia is the second leading cause of death in Australia.
If that doesn’t scare the crap out of you, I’m not sure what will.
Recent surveys indicate that contracting Alzheimer’s is in the top five issues Australians worry about on a daily basis.
Nice to know I’m not alone here—or is it?
10
Let the games begin
It’s almost undeniable that Alzheimer’s is harder on family and friends than the person who actually has it. If you have spent any time at all in a dementia ward, it quickly becomes evident that many of the residents are existing in their own worlds and going about their business, unaware of the upheaval around them—and sometimes that can be comforting, however insensitive this may sound. Amidst all the activity, the scenes that unfold in dementia wards every day can range from depressing, to hilarious, to downright scary, and many of our visits to Mum were not that far removed from One Flew Over the Cuckoo’s Nest.
Not Right In The Head Page 5
