I recently watched a BBC documentary by Louis Theroux called Extreme Love: Dementia about a couple in their early fifties who’d been together since high school and had a nine-year-old daughter; the woman who was diagnosed with Alzheimer’s on her forty-seventh birthday was getting to the point of needing full-time care in a dementia ward. The husband confided that he was already starting to think about the future without his wife, and that once she was being cared for full time in a facility and had lost the ability to recognise him or their daughter, he would probably file for divorce and start forging a new life for them.
Wow. That hit me hard. Given that I am 50, and have a young son, and potentially have that black cloud hanging over my head—how would I feel about that?
I guess most of us would want to say that, in the same situation, we would absolutely want our family to move on and be happy without us. Mum used the ‘lock me up and throw away the key’ line many times—and for at least the last six years of her life she had no idea who any of us were. She wasn’t aware of the birth of my only son, now seven, who she most desperately wanted me to have. She wasn’t aware that my brother’s kids have all grown up into wonderful human beings. She wasn’t aware that my sister has become a successful businesswoman who has just built her own house. And I doubt she was aware that Dad sat next to her, holding her hand, every single day from sun up to sun down, while she sat in that nursing home, basically just existing.
At least, I don’t think she knew any of that.
It’s a horrible situation to be faced with, and there are no wrong or right ways of dealing with the impact of losing someone to this disease before their time. I guess that is the reason so many patients exist in their facilities without any visits from family or friends. It comes to a point where some families decide that life goes on. For them, moving on is the best way forward, knowing their loved one is being cared for in the best way possible by staff who see and experience first hand more than most of us would have to endure in a lifetime.
I have had this conversation with my husband. If I do develop Alzheimer’s and am at the point of not recognising him or my son—then move on.
Just don’t move on with certain people from the list of women I have provided, mainly my girlfriends and his ex-girlfriends. Oh, and there’s a list of songs they can’t play at their wedding … and a list of places they can’t visit together.
I think that’s fair, isn’t it?
12
Take my wife
Given that many dementia wards and nursing homes are inhabited by the elderly, you often see couples who have been admitted together. Quite often, one is in a worse state than the other, but keeping them together seems to be the best option, and perhaps less disorienting for them.
During the course of Mum’s stay, we saw quite a few couples come and go—one couple in particular, Gwen and Len (even their names were a match made in heaven). In terms of their level of awareness, Gwen and Len were fairly evenly paired; quite simply, they were under the impression that they’d been checked into some swanky hotel. A hotel in which everything you could ever want was provided, and the staff were very helpful and attentive. I would see them each time I visited, wandering around the corridors hand in hand, having a lovely time on their ‘holiday’. Always pleasant, with big smiles and warm greetings. Numerous times during the course of a visit I would receive a ‘Nice to meet you’ and ‘Isn’t this a lovely place?’
The beautiful thing about seeing them in that nursing home was that everyone was happy to play along with them, to keep Gwen and Len in their happy place. Could you imagine Gwen and Len out in the wide world? They’d be a pair of sitting ducks. You hear stories of people taking advantage of the elderly and swindling them out of their life savings—and without the safe haven of that nursing home, Gwen and Len would surely have fallen victim to some dodgy individual who saw an opportunity to make a quick buck. But instead, they happily coexisted in their five-star resort, enjoying comfortable accommodation, three delicious meals a day, a laundry service, movie night, and staff on hand 24/7 to assist them with anything they needed to make their stay more comfortable. The only time I saw the downside of this scenario was when Gwen sidled up to me one morning and asked what time check-out was, as they were heading home that day. In fact, Gwen started to ask me that question quite a bit towards the end of their ‘holiday’.
There was another lovely old couple that I started noticing around the ward—always hand in hand, and seemingly both happily slipping into old age together. I took a minute to chat with one of the carers, to gain some insight into their life together and how they’d wound up there. The carer responded rather matter-of-factly that they weren’t in fact a couple, but single patients who thought they were a couple, and spent their days existing within that belief. Part of me was astonished, but then I also thought it was a lovely thing to have happened to them both. If it meant they were living happily in a world that brought them comfort, then why not. Can you imagine what it will be like when the young adults of today are populating nursing homes. Their Tinder apps will be getting quite the workout.
The same Louis Theroux documentary also followed a storyline of a man aged in his late sixties who had been admitted to a dementia ward by his wife, who could no longer care for him at home. He was physically fit and active, but in his mind he was back in his thirties—a successful dentist, and still quite the ladies man. His wife visited him every day, but he would continually introduce women to her as his ‘new girlfriend’. One woman in particular spent quite a bit of time with him, and his wife would have to sit through these visits feeling like ‘the third wheel’. When carers would try to explain to him that the visiting woman was actually his wife, he would become confused and upset. As devoted as she was to her husband, she admitted it was almost time to sever ties and move on with her own life—she found no reason to put herself or her husband through the torment of daily visits.
It’s a tough road to hoe—keeping up a premise that is false, even for the sake of someone’s happiness. There are different schools of thought on how to manage the fine line between fact and fiction in these situations. How do you deal with questions that might lead to an answer an Alzheimer’s sufferer really doesn’t want to hear—such as when someone with Alzheimer’s asks after a loved one who has already died? Do you pretend that the person they are asking after is alive and well and will visit them soon, or do you ‘remind’ them that their loved one has already passed on?
One technique I heard about for caring for loved ones with Alzheimer’s was being trialled in a facility in the United States. Carers would write down key facts about a patient’s life on a small notepad, which was kept with the patient at all times. When the carers were asked a question like ‘Where is my wife?’, the patient was asked to look at their notepad and read what was written down. In one particular case, an elderly gentleman kept asking after his wife who had died many years before. On his notepad, the carers had written, ‘Katherine passed away fifteen years ago and is now resting in heaven.’ Every time this gentleman pulled out his notepad and read that sentence, he would break down and cry. The carers would talk him through the initial shock, but then get him focused again, and he would go about his business quite happily until the next time he asked after his dearly departed Katherine. Such grief time after time must have been excruciating to see, but I guess they’d done enough work with him, and enough research on this technique, to conclude this was the best way to deal with that constant question.
My friend’s grandmother, who had Alzheimer’s, would also frequently ask after her husband, who had died many years before. The family chose to respond to that question with, ‘He has just gone down the shops, Nan, and will be back later.’ As a family, they had decided that a little white lie was the best way to deal with their nan—and that worked for them.
Different horses for different courses.
Another question frequently asked—as with the aforementioned Gwen and Le
n—is, ‘When am I going home?’ I saw many families leave Mum’s nursing home in distress, with their loved one at the door wailing and pleading to be taken home.
I know how awful it feels to leave a young child at day care; my son would be clinging to my leg, begging me not to leave. The teacher would always tell me to use the ‘band-aid method’—a quick rip, detach and walk away as fast as you can. Short-term pain for long-term gain. I knew that five minutes down the road my son had forgotten how much he missed me, and how much he resented me leaving him there, and was happily playing with his friends—but I was often driving to work in tears, left fragile and scarred by the morning’s events. Walking away from a loved one upset by being left behind at the nursing home is perhaps similar in some ways; I’m just not sure how many patients are happily playing Lego with their friends five minutes after you’ve left.
We never had that issue with Mum, as she became rather non-verbal quite early on. Knowing my mother, she would’ve asked after her beloved football team—and I would happily have told her over and over again that they were doing well, sitting on top of the ladder, and would without a doubt win the premiership that season. A little white lie wouldn’t have hurt in that situation, surely—especially given her team’s form over those last few years. Hey, I might have even started believing it myself.
As weird and selfish as it sounds, I am sometimes thankful Mum was non-verbal. We never had to endure the questions and the protests that I saw on a daily basis with other families. It’s heartbreaking, and there is no wrong or right way to deal with such situations. You just have to do what works for you—and whatever works at that particular moment to get you through.
13
Baby talk
My son spent the first five years of his life visiting his nana in the nursing home. Talk about valuable life lessons: they don’t come more valuable than that. There is something very comforting and endearing about watching my son—now seven years old—walk up to strangers in wheelchairs in shopping centres and say hello. He doesn’t seek them out in a creepy kind of way, but he finds nothing odd about seeing someone wheel past him. Even if that person looks different to him, or sounds different to him, he sees them as just what they are: a human being. Kids generally are very accepting of people, no matter what they look like, but I honestly feel he is a better kid for all his visits to Nana’s nursing home. He never saw her out of her chair or wheelchair—that’s just how she was. When his class at school were asked to draw a picture of theirgrandparents for Grandparents Day, my son arrived home with his drawing (which is in the picture section). It showed a pretty good likeness of Pa, standing on the left, with Nana in her wheelchair on the right. He wrote, ‘My papa is funny and I like playing with him. I can’t play with my nana because she is sick. I love them 20 inches long.’
He never had to experience a crazy nana, like I did. One of my last memories of my own nan was visiting her in hospital when I was about eleven, a few weeks before she passed away. I walked through a ward past what seemed like hundreds of beds (quite likely around a dozen) and found Nana’s bed towards the back of the room on the right. She was tucked in under some white sheets, looking very frail, but also very peaceful. I sidled up to get a closer look, and as my hand touched hers she lifted her head off the pillow. I waited for that familiar smile that only a nana can give to her youngest granddaughter. She opened her eyes, looked at me, put her hand on mine and whispered, ‘Don’t go near that cupboard behind you, because there is a man in there that will come out and take you away.’ Holy shit, Nan! I knew she was a bit crazy and had a bad memory, but WTF? She’s talking like someone who writes for Wes Craven films.
I had always looked on the positive side of Nan being a bit nuts. She always said funny things, and she gave the best presents—some of which may have been obtained using less than conventional methods. My cousins often received expensive bottles of perfume for birthdays and Christmas, and when asked how she could afford such extravagance, Nan would claim they only cost around $1.50 each. A few different theories have gone around our family over the years as to how Nana came into such good fortune with her shopping. She’d spent so much time in department stores in the city that maybe some of the proprietors looked fondly upon her and gave her merchandise at a ridiculously discounted rate? Another theory is that she had a secret stash of money hidden away and would use it buy us expensive gifts and claim they had cost next to nothing. And then there is the obvious theory, which probably doesn’t need explaining. As a kid I just remember the cool gifts—who cared how she got them.
Having someone in your life who suffers from dementia can be confronting, especially if you are a child, but it also instils in you a good level of acceptance. When we visited Mum, my son spent most of the time playing with his cars on the floor, showing her his latest acquisition. He didn’t question the fact that Nana never responded—that’s just how she was. One morning a carer walked past and saw him hold up something to show his nana. The carer asked him if he was having a nice visit with his nana. He was. She then asked him what Nana thought of his new car. He looked at me, then at his dad, then at Nana, back at me, then looked to the carer and said, ‘Nana can’t speak.’ There it is, plain and simple. Nana can’t speak, and that wasn’t in the least bit odd to him.
On another visit, Mum had spent most of the time asleep in her chair, as she regularly did; our visits were more about being there than actually interacting with her, as she was often asleep, especially towards the end. I was sitting in a chair next to her, reading the paper. My son was playing on an iPad. One of the other visitors walked past and stopped to chat with us, and asked him how Nana was doing today. He looked up from his iPad to his nana semi-slumped in her chair. ‘She’s dead,’ he answered, and went back to playing his game. The woman gasped, so I quickly tried to reassure them both that Nana wasn’t dead, but merely sleeping. He looked up at his nana again and said, ‘Nup, she’s dead,’ then back to his iPad. I wasn’t sure what the right thing to do would’ve been, but I’m pretty sure I didn’t do it. I leant over to Mum, picked up her arm and started waving it around, saying, ‘Look! I’m not dead, I’m not dead, I’m just sleeping!’ in a Weekend at Bernie’s kind of way. My son ignored me, and the nice lady who had kindly stopped to visit quickly beat a hasty retreat.
As well as the awkward moments, there are also the heartwarming ones that come with taking children into nursing homes. Entering the building with a baby is like walking down the street with an eight-week-old labrador puppy: everybody wants a piece. My son’s cheeks were squeezed so often they were permanently red from the age of one month to three years. The presence of a baby or toddler did amazing things to the overall mood within the building. I would walk around with my son, holding him in front of me like he was a fine bottle of wine being presented to a table in a five-star restaurant. While he was a baby I was quite strict about not letting the patients hold him, but as he started walking, he would often disappear down the corridor on the end of a relatively strange elderly hand, which he knew was safe enough to do within the circular confines of the dementia ward. Once he got a little older, he turned his hand to helping out with the therapy games. Keep the balloon in the air, catch and throw the ball, knock down the plastic bowling pins, and his all-time favourite—quoits. It was just like a kids’ party, except less sugar and much less running around in capes and tutus.
After Mum passed, I didn’t have much cause to take my son back to the nursing home, but during the last school holidays, we visited Dad for lunch. As Dad still spends quite a bit of time there, and quite a bit of effort on the gardens, he wanted to show my son around the grounds and the vegie plot he’d recently planted. So we arrived at the nursing home, popped the four-digit code into the keypad, and instantly were transported back in time. The memories came flooding back, and I felt myself getting rather emotional. As we were walking through to the communal dining area, we noticed a gentleman seated at a table on his own. My son waved as we walked
past, and the man started shouting ‘Hey, hey, hey, hey!’ over and over again, at a ridiculously loud volume, snapping me out of my Hallmark moment. My son didn’t miss a beat—he smiled at the gentleman and kept on walking.
Dad was in his element showing his grandson around the garden, in the process picking up all the fruit and flowers lying along the path, muttering ‘Bloody pests!’ with every bloom he picked up, cursing the pesky residents who took it upon themselves to prematurely prune and harvest.
After pottering around the garden for a while, we started to head towards the door leading back into the living area. We noticed a group of ladies being led through the room into the games area, ready to start an activity. Dad’s protective instincts kicked in, and he grabbed my son before I could open the door, suggesting we wait until the passing parade had finished. I had faith in my boy’s ability to cope with a bunch of old ladies, so I brazenly flung open the door and pushed him forward into the room. It was like a band member of One Direction had just turned up at the local school prom: arms and faces were coming at him at a rapid pace—grabbing him, kissing him, patting him on the head. I watched my seven-year-old stand calmly in the middle of a bunch (would the collective noun be a ‘wander’?) of dementia-suffering women, smiling and nodding at them for over five minutes. One lady took a particular interest in his hair, and for the entire time ran her fingers across his forehead, brushing his fringe back over his head. He just stood there and took it; this is the same kid who won’t let me near his hair when I’m trying to get him ready for school. Another woman was talking to him in Maltese, and every time she paused for an answer from him, he would look to me and I would mouth, ‘Just say yes.’ He would nod and say yes and she would continue talking. Every now and then the word ‘spaghetti’ would come out of her mouth, which piqued his interest, being a big fan of spaghetti.
Not Right In The Head Page 7
