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.
Today, my niece and her husband visited Ants and me in the nursing with their firstborn, my first great-nephew. I also have a great-niece of about 18 months of age who is, apparently getting used to her strange, new, tiny cousin!
We also visited another of my niece’s auntie’s mother-in-law in a section of the nursing home adjacent to Anthony’s. Everywhere we went there were looks of admiration, surprise and joy from both residents and staff.
Anthony was a bit nonplussed and didn’t even seem to understand that he had, once again, become a great-uncle. We couldn’t put this beautiful new baby into his arms because it probably wouldn’t have been safe due to his PD. Oh well, I got to hold the little beauty momentarily before he started crying, and then I gave him back to my niece for a feed.
I have deliberately left names out of this post for the sake of privacy but just want to express my gratitude to my niece and her husband for bringing their beautiful baby in to see Anthony.
It is kind of weird to be a great-auntie to two babies now but it is also wonderful – absolutely wonderful!
I decided to take a day off from visiting Anthony so just texted Ming to visit after work and he texted “Sure” – brilliant!
Instead I have been catching up with laundry and housework and further decluttering. It’s astounding how making myself accountable to Dina is so effective!
The weather is winter warm so at one point I took off my jacket and …
Well at least it wasn’t a cockroach!
My feeding of wheat to the peafowl and guinnea fowl is deliberately haphazard because there is plenty of ‘food’ for them without the wheat and I don’t like them getting too dependent. Nevertheless as soon as they hear the back door open, they start running towards me – it’s so funny.
Then there is quite a bit of competition as to who gets to eat first.
Yes, I know she looks like Gutsy but she isn’t.
After they’ve eaten their fill, they bask in the winter sunshine.
I’m a bit rusty with the photography but wanted to take a few new photos to show the women I’m visiting in the nursing home, three of whom are not in the dementia cottage. Yesterday I visited Gertrude (not her real name) who has only recently become a resident. She has Parkinson’s disease too and she was commiserating with me about Anthony who she said was “so young!” I guess 79-year-old people do seem young to 90-year-old people! At one point we discussed the pros and cons of diseases:
Gertrude: Tell me, which do you think is worse – Parkinson’s disease or that other one? (She pointed to her head)
Me: You mean Alzheimer’s disease?
Gertrude: Yes.
Me: Well Anthony has both now so I’m not sure ….
Gertrude: Both? This isn’t fair for him.
Me: Well it’s not Alzheimer’s exactly; it’s dementia caused by his kind of Parkinson’s disease.
Gertrude: I don’t have that.
Me: No, I can see that! You don’t have the shaking thing either and Anthony is the same.
Gertrude: I’m improving and sitting in this chair is so much better than lying in that bed.
Me: Do you have pain?
Gertrude: Just a bit of arthritis. Nothing much.
Me: I’m so glad. Anthony doesn’t have pain either – such a blessing.
We exchanged a smile and a hug and I went back to Anthony’s room which is in a different section.
Well I better get back to finishing the jobs I need to list as “done” for my email to Dina tonight!
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.
Yesterday I went to see the people who help people like me to access employment and/or volunteer opportunities. I thought it was about time I got out of my lady-of-leisure mode since resigning from my job at the nursing home several weeks ago.
The woman I spoke to (I will call her Sue) pulled up my records and I misheard her saying that Anthony and I were separated.
Me: No, no, we aren’t separated!
Sue: Illness separated?
Me: Oh, yes, I see. He’s in a nursing home.
Anyway, Sue was very helpful and asked me to come back today with various bits of paperwork that would help to get me back ‘into the system’.
Even though the phrase “illness separated” isn’t new to me, I hadn’t heard it for a long time so it shook me up a bit. Of course there is no other way to describe our situation in terms of the red tape but it still sounds weird, especially the “separated” bit. Oh well.
The views from Anthony’s nursing home window sometimes look uncannily like home and yesterday he ‘saw’ his nephew milking the cows outside and wanted to help. I looked out the window and tried to see what he was seeing (his hallucinations are, thankfully, happy ones mostly).
Me: It’s okay, Ants, he’s just about finished milking.
Anthony: What about the fences?
Me: Ming’s taking care of all that.
Anthony: How much money do we have in the bank?
Me: Lots, thousands!
Anthony: Okay.
I think we might fall into the category of “illness inseparable” now but that wouldn’t tick the boxes ha!
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.
I have just returned from a delightful couple of days in Perth with a wonderful friend. She flew down from up north and I drove up from down south and we stayed at a beautiful resort, shared some fine wine, extraordinary pizzas, watched a very complicated movie twice (because we didn’t ‘get it’ the first time), and enjoyed chef-styled breakfasts each morning.
It was brilliant! We each had various big-city things we had to do so yesterday we went our different ways for a few hours and I visited my friend, Rose, at Dimario http://dimario.com.au
Dimario is a shop that is close to my heart for many reasons (for example, I love boots). But the main reason is that several years ago, when Anthony wasn’t so ill, we walked in and I fell in love with a pair of boots that were extremely expensive and extremely beautiful. Ants and I had to go back to our hotel room to mull it over and, despite being a rather scroogy careful-with-money person back then, he wanted me to have those boots.
From then on, whenever we went to Perth (which was only once a year), Anthony would actually suggest going to Dimario. Rose and Nikki would welcome us like old friends and Ants would watch as I tried the various boots on, usually convincing me to get the better, more elegant and expensive ones.
Then, one year, it became too hard for him to get out of the car; another year, it became too difficult for me to take him from the hotel to the shop, so I went by myself; another year, he was in a hospital in Perth having his Parkinson’s Disease medications reassessed; another year Ming came with me and cloned Anthony in picking out the best pair of boots; another year we didn’t go to Perth at all as Anthony’s health had deteriorated too much. I guess that was around four years ago and my memory of this phase in our lives blurs a bit around the edges.
To see Rose again yesterday, despite the fact that it’s probably been a couple of years now since I visited her gorgeous shop, was incredible. I was greeted with a hug!
Rose: And how is your beautiful husband?
Me: He’s in a nursing home now but he still remembers you and I need to buy some boots so I can wear them to the nursing home and remind him again.
Rose: I will always look after you; what about these?
Me: Not me – I rather like those….
Rose: And how is your beautiful son?
Me: Still beautiful. What about those embroidered boots?
Rose: They’re on sale – let me see if we have your size.
Rose then told me that Nikki had retired but had a pair of the same boots and I asked her to give Nikki our love. She said she would, then, when the boots were a perfect fit, Rose discounted them even further, I bought them and we had another hug as I left.
After that, I picked my friend up and we went back to the resort. We shared a mutual admiration of our purchases then began (again!) to watch the stupid movie and order pizza.
Today, I dropped my friend at the airport and headed home. We are going to meet like this every few months; it’s a wonderful arrangement and, even though she and I have lost touch on and off over the decades, we are still the same buddies we were as teenagers.
And I can’t wait to show Anthony my new boots tomorrow!
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!
jmgoyder 