I have now brought almost all of the photos from this house (in frames, albums, and boxes) into Anthony’s room at the nursing home, to sort through. I began to scan some of these about a year ago but then lost the impetus. Well, the impetus is back! It will be so great to scan photos into my computer and get rid of the bulk!
A few photos, taken recently, will take precedence in a possible photo book. Thanks, Ashtyn and Gordon, for letting us hold your beautiful baby boy!
When the day begins to close its curtains on the sun, people with advanced dementia often become restless. This kind of agitation is called ‘Sundowner syndrome’ and I’ve written about it before.
Anthony is definitely affected by the syndrome and, by around 4pm, he is quietly distressed and confused. I am adapting as well as I can to the difference between 11am and 5pm; i.e. at 11am Ants is lucid and able to express himself verbally, but by 3pm he sometimes thinks that the television show (at the moment Doc Martin) is actually happening in real life, and by 4pm he begins to descend into such a state of confusion that when I say, “Okay I’m off to get some wine”, he just replies, “Don’t be too long, Jules!”
The domestic and care staff at this nursing home are so wonderful and many have become friends; they all know that it is best to say to Anthony that ‘Jules will be back soon’.
Today I bumped into the wife of a beautiful man who, before he died a year ago, was next door to Anthony. She is elderly too and using a walking frame. Let’s call her Trudy.
Trudy: So how is your husband?
Me: Very confused now … well, you know how it is.
Trudy: You wonder what they are really thinking don’t you.
Me: Yes. You must miss him so much.
Trudy: It’s a year now.
And her eyes filled up.
Anthony and I are so lucky to have each other and he is luckier than most because he has a younger wife who is determined to ensure he is cared for. It is a bit of a unique situation because most of the residents’ spouses are either deceased or struggling with their own health challenges.
When I visited a totally lucid 95-year-old woman today, she expressed so much concern about her 70-ish son that I felt a bit awestruck by her courage and compassion.
Jane: He had to have a shoulder operation.
Me: So when will he be back?
Jane: So what’s your name again?
Me: Julie – you know, my husband is two rooms down. How’s your pain?
Jane: It’s not the pain, I just feel so exhausted all the time as if I’ve been run over by something.
Me: Like a truck?
MUTUAL LAUGHTER
I want to keep writing about this ongoing story of dementia; I want to critique the various interventions that are in place; but I also just want to BE with Ants.
I wrote about Dina from Chaos to Clear in previous posts, describing how this wonder woman helped me to declutter and reorganise the spaces inside and outside this house. The process was a twice-a-week visit from Dina, over a period of several months. She/we even tackled the sheds despite the possible presence of asbestos.
During this process, Dina and I became friends. She visited Anthony with me (where we sorted a huge box of old photos and another box of old paperwork), and she even visited Anthony last week when I was away in Perth!
Dina also supported me in a face-to-face meeting with the managers at the nursing home about my desire to continue to visit various residents despite having resigned. Her presence at this meeting ensured that permission would be granted, and gave me the confidence to state that I was already a family friend of many of the residents.
Anyway, this week I suddenly found myself a bit overwhelmed again with a new accumulation of unopened mail, the dregs of clutter I was supposed to have eradicated/given away, and Ming’s stuff here and there untidying my newly tidy house. So I emailed Dina asking her to come back and help with these last jobs.
Then – the next morning – before Dina even had a chance to reply, I emailed her again to retract my request and that I could do it by myself but I needed to be accountable to someone.
Dina emailed me back saying yes and to just imagine she was there looking over my shoulder. So for two days now, I have been reporting back to her about what I’ve done, and she has been encouraging me (all of this via email). This kind of accountability has worked wonders in terms of motivation!
Depression (yes, I have it) sometimes means that the person afflicted wastes days worrying, and nights dreaming, about tasks that only take an hour or so. The fear of those tasks is, of course, irrational, but when you are in the throes of depression and/or anxiety, even the simplest of tasks can be overwhelming.
I haven’t admitted to many, including Dina, that I battle with depression but I’m sure she realises and I so appreciate her kindness and patience with me. And her incredible support beyond the call of duty!
Who would have known that when I simply googled “chaos” I would find such a beautiful friend. Thanks, Dina.
I wake up every morning, alone in this old, cold, quiet farm house, and smile into the memories of when it was full of warmth, people, noise. I know I should light the Aga, get the fireplace blazing, turn the radio on loud, make scrambled eggs, but Ming has already gone to work and I’m not hungry.
So I get showered and dressed fast, so I can go to the nursing home to be with Anthony for the day. His room has now become my home-away-from-home so much so that I want to be there more than I want to be here.
I like to get there at around 11am but sometimes it’s not until the early afternoon (depending on other various commitments). This daily reunion is fantastic:
Me: DAAAAAAARLING!
Anthony: How do you always know where to find me?
Me: I’m a genius!
Then, after a hug/kiss embrace, I proceed to tidy the room a bit, move his chair so I can put my chair beside his, turn the heater on (it should always be on but sometimes isn’t), put a blanket on his knees, have a chat, help him with lunch or afternoon tea.
Once settled, we watch whatever series I have on hand. House of Cards is our current choice and Ants loves the Britishness of this and I love the plot!
So, in this home-away-from home nursing home room, I put my feet up onto Anthony’s lap and we are together.
There is a lovely woman (I will call her Mary) who works as supervisor during afternoon shifts at the nursing home. She and Anthony have such a rapport now that his slow smile stretches into a grin when she enters his room to give him his 4pm meds. The three of us now joke that she is his ‘girlfriend’.
Today was no exception:
Mary: Hi Anthony, I’ve got your pills.
Me: Ants, it’s your girlfriend!
Anthony: Hi … (smiling)
Me: It’s Mary, Ants.
Anthony: Hi Mary.
Mary: Here are your pills, Anthony.
She and I then got chatting while Anthony swallowed his pills (it sometimes takes awhile). I had my one remaining PhD student’s nearly-completed thesis on the table and was checking it for typos. Mary was curious so I told her I used to work at the university and that I’d done a PhD too years back and turned it into a book about Alzheimer’s disease. She asked if she could read it so I gave her the copy I have in Anthony’s top drawer. Then she got called away.
A few moments later, I asked Ants if the pills had gone down.
Me: Have you swallowed them?
Anthony: No.
Me: What? Do you need water? Open your mouth. Yes, they’ve gone down, your mouth is empty.
Anthony: No.
Me: What do you mean ‘no’?
Anthony: Ring the … girlfriend. She might have them.
Me (laughing and hugging him): I don’t need to ring her – she’s here! And the pills have gone down, trust me!
I continued to read the thesis when all of a sudden Anthony belched loudly. I put my pen down and glared at him.
Me: How dare you burp in my presence!
Anthony: I’ll have you know … I’m whatshername’s boyfriend.
I find it absolutely amazing that, despite the confusion of Anthony’s dementia, his sense of irony and humour can be so extraordinarily spot on!
After laughing my head off, I took my leave with the usual excuse of ‘just going to get some groceries’.
Anthony: Don’t be too long.
Me: I won’t and just remember I am your real girlfriend.
Anthony: No you’re not – you’re my wife.
It was a very happy drive home.
Another irony is that Mary has borrowed my book which is based on a similar experience from my years-ago nursing days. The way Mary and Anthony interact parallels my experience with a patient I called ‘Joe’, whose refrain became the title of the book “We’ll be married in Fremantle.”
Perhaps the fact that I no longer work in the dementia wing is, despite the difficulty of having had to make this decision, a good thing. As I am now a lady of leisure again, I have much more time to write about the subject of dementia which is so close to my heart and has been for over 20 years. Now, of course, it’s even closer with Anthony in its grip.
My mother and I had a laugh on the phone today because she had visited Anthony in the morning and, after an hour or so, he suddenly said, “Are you going home now?” Having been dismissed, she gathered her knitting and left after giving him a hug.
Me: How come you asked my mother to go? She was hurt.
Anthony: I didn’t.
Me: You asked her if she was going home and she took the hint!
Anthony: She’s not you.
Okay, so my mother is out of the competition but there is still Mary to worry about – haha!
A couple of years ago I read Lisa Genova’s novel, Still Alice and, over the last couple of days, Anthony and I watched the movie. For those who haven’t seen or read the story, Still Alice is about how a linguistics professor, Alice, is diagnosed with early onset Alzheimer’s disease at the age of 50 and how she and the family cope.
I suppose it was a strange choice of film to watch with a husband who has Parkinson’s disease dementia (and was probably a contributing factor in the grief I felt the other evening). But yesterday, as he and I watched the final scenes, he suddenly became quite engaged in Alice’s deterioration, and asked me what was wrong with her. I keep the dvd controller close so I can pause whatever we are watching whenever Anthony says anything.
Me: She has Alzheimer’s disease.
Anthony: It’s worse now, isn’t it.
Me: Yes.
I had paused the film at a particularly stark close-up of Alice’s confused expression (Julianne Moore is brilliant as the character Alice). Anthony and I both looked at her face for a few moments then I hit the play button again and we watched silently as the movie came to an end.
Unlike Alice, Anthony has not had to experience the creeping horror of knowing he has dementia. He still doesn’t know and I don’t tell him because I don’t want him to be afraid or embarrassed. So, when he asks where his mother is, or how she is (this is a frequent question) I just say that she is fine.
Anthony: Is she at home?
Me: Yes.
Anthony: Is Ming there too?
Me: Yes, and they’re both fine.
Anthony: So when are we going to Golden Valley?
Me: When the weather gets warmer, Ants. It’s too cold today.
Anthony’s mother died over 30 years ago and Golden Valley was his childhood home so the only ‘real’ aspect to these conversations is Ming.
I’ve recovered from my grief episode of the other evening and, since watching Still Alice, realise how lucky we are that Anthony has never had to go through that fear-of-dementia experience because it has just happened, insidiously, slowly, kindly even. He doesn’t know he has dementia; he still recognises all of us; there is still a lot of laughter and Anthony’s one-liners are hilarious.
Anthony: You need to brush your hair.
Me: I just did!
Anthony: Do it again, it’s not right.
Me: I’ll shave your head if you keep hassling me!
Anthony: Feisty!
Still Anthony.
There are all sort of theories out there that encourage people to combat their despair, depression, and personal tragedies, with positive strategies and tips. Many of these theories and tips are extremely helpful. In fact there are probably more resources now than ever before and it can be a confusing array for someone who is in despair. Nevertheless, despair is despair is despair and I have found, within my own ongoing situation with Anthony’s Parkinson’s disease and other situations (which we all have), that accepting these moments of despair is much more useful than trying to frolic them away on the back of platitudinous clouds. Clouds wouldn’t be clouds if they were constantly shot through with those over-heated parasites of despair. Don’t get me wrong; I am not in despair but it does have a habit of visiting me unexpectedly from time to time and last week it became such a pest that I had to politely ask it to leave. And, hey presto – whatever that means – it was gone! Okay I have my nouns, verbs and metaphors a bit mixed up but what the hell; I don’t teach at the university any more so, as far as I’m concerned, my sentences can do what they want. And the point of this post? The enormous power of humour. Ming, Ants, Meg and I watched our favourite comedy series this week and, even though Anthony’s ability to laugh loudly like he used to, has gone, there were a lot of smiles. The despair left the room with its tail between its legs and, next time it decides to pay a visit I will be armed and ready – with laughter! There is so much more I could say about this but I will save it for another post because it can be quite exhausting laughing despair away!
Yesterday, a nurse and her husband visited the nursing home with their beautiful newborn in his pram. I bumped into them in the hallway outside Anthony’s room and was absolutely thrilled to see this beautiful baby and asked them if they could wheel the pram into Anthony’s room so he could see the baby. Of course they were delighted to do so.
But then everything went wonky. For the entire afternoon, Anthony was distressed about the baby.
Anthony: We already have one; we don’t need another baby.
Me: He isn’t our baby, Ants! They just wanted to show him off to you!
Anthony: Where’s the baby?
Me: He’s gone home with his parents; he isn’t our baby, Ants!
Anthony: I’m worried about our baby.
Me: Please, Anthony, he is not our baby; they were just visiting!
I was with Ants for the whole afternoon and, every time he woke up from dozing, he became anxious about the baby. I have never seen him this confused before so I guess we are entering a new phase.
One of the things I’ve learned over the last year or so is that I don’t need to do anything, go somewhere, think of an activity, plan an event, force Anthony to converse, figure out how to get loved ones to visit him more, stress myself wretched with ideas of how to make his life better … I just have to be there.
So that is what I do now – an undoing really – a breath-saving realisation of how simple it is. I sit next to this beautiful husband of mine, with my hand on his shoulder, or stroking his head, watching television, talking about the past, sharing secrets, rejoicing in our son, Ming, smiling at each other, joking about silly things ….
We are so conditioned to do, do, do! It is such a great relief to simply be there, to embrace the long stretches of silence when Anthony is dozing, to quietly rejoice in the fact that our love has not been diminished by his disease, to just be.
jmgoyder 