I have decided that it is way too long since I have met up with someone who I used to be closer to, but have lost touch with. This is entirely my fault, as she is always there, no matter what.
Tomorrow, my plan is to surprise her; my alarm is set for 5am so that I can catch a few moments with her before she goes on her daily journey. I hope she will remember me and the good times we used to have. I hope she will say yes to me when I ask if we can be friends again.
Her name is sunrise.
I don’t know how this will work because Jack is just a tad unruly, so wish me luck for tomorrow!
Lately, Anthony has been asking me more and more frequently where his mother is, and sometimes he asks me to ring her. Mostly I evade the question or just say that she is busy cooking, but the other day I ventured, “She’s gone, remember?” This truth made him sad and quiet for some time and then he was a bit embarrassed for having forgotten.
One of the best things about this nursing home is its meals. Lunch is often a roast served up in much the same way as many of the elderly residents remember their mother’s offerings. The photo below shows Anthony’s meal the other day before he demolished it – roast beef, potatoes and pumpkin, with cauliflower gratin, peas and gravy.
Last week, my mother, brother, niece, Ming and I attended the funeral of one of our oldest and most special friends, V, a woman who first taught me to drink from a straw when I was little, and for whom Anthony had a lovely affinity. My funniest memory is of V staying here on the farm one night and 4-year-old Ming (who used to sleepwalk) clambering into bed with her in the early hours and cuddling her nose into the wall. I remember getting up and not being able to find him until I discovered him fast asleep with his little body curved around V who looked a little alarmed! To V’s sons, siblings and family, your mother was a legend.
Yesterday, I attended the annual memorial service at Anthony’s nursing home. I dumped my bag in Anthony’s room, gave him a quick kiss and explained that I was going into the next section to pay my respects and volunteer as helper in the serving of tea and coffee, cleaning up etc. He wanted to come with me until I told him it would be like a church service! Once I was seated and reading through the list of people who had died, I was shocked to find that there were 18 because I only knew of two, J and A. J was in the room next door to Anthony’s for over a year, and A was a beautiful, tiny woman who used to get great pleasure from holding the dolls that look like real babies. The fact that 16 other people had died in different sections of the nursing home during the past year jolted me and, looking around the room, I spotted J’s wife and her tear-filled eyes blinked at mine, anticipating the hug that we would share later.
After the service (in volunteer mode), I helped Ev (my volunteer ‘boss’), to rearrange the room into a cafe whilst, out on the lawn, the people who had lost someone released balloons filled with wattle seeds and helium. On the small crowd’s return, on walkers, in wheelchairs, on foot, I served tea and coffee, made friends with a few residents and volunteers I’d never met before, gave hugs where it seemed acceptable, and pinpointed T, J’s widow, to give her my sympathy. After all, she and I had been visiting our husbands at around the same time every day for a year. But her red-rimmed eyes eventually dismissed me and I moved away to help Ev with the clearing up of cups and saucers, tables and chairs. Once all of that was done, Ev thanked me and said I could go back to Anthony, so I did.
But, just seconds later, I was told by the nurse-in-charge that M, a 91-year-old man two rooms down from Anthony’s, had died in the night. Two days previous, I had hugged R, M’s wife, when she told me that M had pneumonia and I had just begun to, shyly, befriend the many members of this family and learn all of their names. Now that M is gone, I may never see R and the family again and yesterday afternoon, when they all came to clear out M’s room, I was very careful to keep a distance, to just speak to one of M’s daughters before withdrawing into Anthony’s room, closing the door and crying in his bathroom.
A bit later, Anthony hugged my grief away enough for me to be normal, even jovial, but the experience of losing this many people I cared about in such a relatively short space of time is difficult.
I remember so well the day that Anthony’s mother, ‘Gar’, died because I was with her, in the hospital, 33 years ago. She and my father died within less than a year of each other and, at the time, my teenage heart didn’t cope very well with losing two such enormously important mentors and the grief was unbearable.
But now, with the benefit of an additional 30ish years of hindsight, insight and love, I think that next time Anthony asks where his mother is I will say, “Just around the corner, Ants.”
Last week Ming got his driver’s licence back. He had to do a written and a practical driving test and the very next day we went up to Perth to collect the little second-hand Toyota Yaris (he has christened it “Fran”) that he had arranged to buy with his savings. Obviously our insurance claim on his ute/truck didn’t pay, but even if it had, Ming never wants another ute again so someone bought it for parts and towed it away earlier in the month. The sight of it out in the back yard, for all of these past months, is not something I will miss although it still has a kind of ghostly presence there, slowly fading.
Ming felt there was one last thing he had to do (to move on, I guess) and that was to go back to the site of the accident and remove his P-plate from the tree he’d crashed into. After the accident it had been stuck up high on the tree and we were never sure if the police or insurance people did this to mark the spot for further investigation, or if it was just someone being nasty. In any case, yesterday, Ming took our old ute and a ladder up there and removed the P-plate. He also found bits of debris from the crash so he removed those too and brought them home to be taken to the dump.
Having regained his independence, the angry Ming of the last few months seems to have disappeared and the angelic Ming has returned – haha! In a way I guess we have now come full circle in the sense that he was a newly licenced driver when the accident occurred and now he is again a newly licenced driver but with an older head on his shoulders. So that is that. Or is it?
Naively, I had thought that once Ming got a car and his independence back, there would somehow be a feeling of closure (for me, I mean), but I relapsed last week into some of the feelings described in the last two posts. The closest I can get to describing this is to liken it to waking up just before a nightmare has come to its conclusion, so you never get to “The End”, and you don’t get that phew of relief that it was only a nightmare. Perhaps the notion of closure is a myth we have invented in order to make things neat and tidy again after a traumatic experience. Perhaps it is living with and beyond the absence of closure that makes people stronger, wiser, even kinder. I don’t know.
What I do know, however, is that I have never seen anything as funny as big, tall Ming folding himself into little, tiny “Fran”!
Ev, the Events Coordinator at Anthony’s nursing home, doesn’t work on the weekends usually, so I asked her if I could do some of my volunteer work in the Dementia wing and she said yes! She told me that they have activities between 3 and 6pm and I could join in any time, so today I had my first taste of what this would be like. I knocked on the main door (it’s a locked section) and I got a nice surprise when the staff member who opened the door was Jill, who I already know because she brings three women residents for a walk around the nursing home every day at about 3pm and they pass by Anthony’s room where we all exchange waves and hellos. Once I explained I was now a volunteer, she was delighted and asked me to come for the walk. I was thrilled.
Jill always holds 91-year-old Wilma’s hand as they walk; Beryl (80s) usually walks by herself; and Meg (80s) holds her daughter, Cheryl’s hand. All three women residents are extremely mobile, cheerful and vocal (including singing as they walk) and all three also have dementia. Towards the end of the walk, Beryl put her left hand lightly around my right elbow and I felt a pang of joy as she asked me again what my name was. Back in the dementia wing, we all sat outside in a lovely patio and Jill organised some memory games. At 4pm, my hour was up so I excused myself and thanked the staff and residents for having me. Beryl squeezed my hand and said goodbye.
On the way back to Anthony’s section of the nursing home, I felt a sense of happy nostalgia for the years I worked in nursing homes, the years I wrote about dementia in my PhD and a subsequent book. I also felt a bit of melancholy nostalgia for the years of writing during which Anthony would help me fine-tune my argument which was about the importance of listening to, and conversing with, people with dementia, regardless of how the conversation might meander between memory, fantasy, lucidity, sense and nonsense.
It was amazing today to see staff and residents so compatible and cheerful but what really got to me was the mutual respect shown. I worked in several nursing homes in the late 1980s to 1990s and I never once saw what I saw today: staff and residents having fun together in a prolonged way!
Rushing into Anthony’s room so I could tell him all about it, I found him still asleep in his chair the way I’d left him an hour previous. I sat down in the chair I always position next to his and put a favourite DVD of ours into the player I only bought a few days ago The IT Crowd. Ants kept sleeping while I watched a few episodes but, every time I guffawed, he would open his eyes and smile, then tell me to turn the hoses off.
[To blog-friends, I’ve decided to post on weekends and do comments and read blogs during week now. I feel a bit out of touch!]
It has taken several weeks to sort out the red tape of me volunteering at Anthony’s nursing home. Okay, let me explain: I will now get paid a small allowance if I do 15 hours of volunteer work per week at a not-for-profit organization.
As it happens, Anthony’s nursing home is not-for-profit so last week the Events Coordinator, Ev, showed me the ropes and suggested things like playing cards with Nat, an 83-year-old woman with Parkinson’s Disease and numerous other afflictions, who is in a wheelchair. Then Ev said, “You can always bring Anthony to sit and watch.” My heart did a somersault.
Well, since I already know Nat, it wasn’t exactly difficult to break the ice on Monday, but I was still nervous. I got to the nursing home before noon and helped Ants with his lunch and explained the volunteer thing then I left my bag and scarf in his room, so he would know I was coming back. Then I went to find Ev who wheeled Nat up to the dining room so we could sit at a table for the most complicated card game I have ever played! [more about that tomorrow]
Nat: At a loose end are you, love?
Me: No! I’ve become a volunteer here and you are my first victim, Nat.
Nat cracked up laughing. She is quite famous for her huge, loud, beautiful laugh. Then she said, “Go and get Anthony.”
So I did.
In my last post, I wrote a bit about how, instead of taking Anthony out for drives or bringing him home for the day, I have begun to make myself home in his room in the nursing home. For those who don’t know, Ants has advanced Parkinson’s disease with encroaching dementia, advanced prostate cancer and several other conditions. He is 78 and has been in the nursing home for nearly two and a half years. I have already blogged about the heartbreak of that mutual decision, and written about the ongoing ups and downs since then.
Several weeks ago, I realized that I had to stop getting Anthony up and out, and back home, and visiting friends and relatives, and going to restaurants etc. because I could no longer lift him in and out of the car, wheelchair etc. Well I could actually, but the physical strain and emotional stress of all of this maneuvering was taxing for both of us, and Ming too of course.
You see, all of the above jobs were infused with a panicky anxiety. Will the pills work today? What if I can’t get Ants to the toilet in time? Will he try to walk around the farm/restaurant and fall again? What if I have to get the ambulance out to the farm? Will he be too cold and insist that every heater is on? Will Ming cope? Will I cope? Will Anthony cope with going back to the nursing home after being out and about? Will there be more tears than we have already cried?
So, almost as an experiment I guess, I began to spend more time in the nursing home, something I couldn’t have done even a year ago – too boring, too sad, too scary, too confined, too uncertain – I hated it. But gradually, over many weeks now, this has become the norm and the fact that I am spending several hours a day with Ants in the nursing home means that he is no longer so desperate to come home and often, by late afternoon, he thinks he is home.
I keep long-lasting stuff, wine and snacks in one of Anthony’s cupboards, bring a favourite food every day (blue cheese, chocolate, olives etc.) and sometimes it’s a little bit like a party. If the heater isn’t on, I turn it on, put a blanket on Anthony’s legs and do up his jacket up (he is always cold). Then I turn the television on to whatever our program is for the day (Master Chef, Midsomer Murders, Neighours). During the commercial breaks, I mute the TV so we can talk but lately Ants is having a bit of trouble with speech so I have to help a bit. Yesterday he couldn’t get the sentence he wanted to say out so I told him I could read his mind and not to worry. And I can read his mind.
But then his words came out:
ANTS: You make me nervous, Jules.
ME: Why?
ANTS: I’ve fallen in love with you again.
ME: Hell, Ants, we’ve already done that!
It is several weeks now since I began the routine of making myself at home in Anthony’s room at the nursing home. Sometimes I am there from noon to 5pm, but mostly from 2-5pm. The fact that I am always there at sundown has been a plus, and sometimes Ants thinks he is at home. My mother visits him at least once a week and told me that I had made a little ‘Bythorne’ there (that’s the name of our farm). I now write everything Anthony says to me in a notebook because I am fascinated at how someone with encroaching dementia can to-and-fro from past to present, from memory to imagination, from anxiety to exhilaration. But his grief when I leave to go home can be very upsetting because I have to explain that I am going back to Bythorne and he has to stay in the nursing home. Anthony doesn’t always understand this and thinks I am abandoning him so it is always a difficult ‘goodbye’ but I think I have figured out how to make it easier with a bit of banter – not sure yet.
This afternoon Anthony was, as is usual now, in his armchair in his room at the nursing home and a bit confused. I put the heater on, zipped up his jacket, put a rug from home on him and changed the TV station to “Neighbours”. Anthony’s hands were cold, so I took the heat bag my friend Jen made and microwaved it for 4 minutes in the kitchen (staff let me come and go from kitchen area now), took it back and put it on his lap, placed his hands on it and put the rug on top.
Anthony was really drowsy – has been all week – but at one point I was able to rouse him (by punching him gently in the shoulder). His eyes were blank until they met mine and I said, “Ants, I love you more than anyone in the world.” Suddenly my eyes filled up with tears.
There wasn’t much response so I tried again, more shoutingly, “Anthony, I just told you that I love you more than anyone in the world, and my eyes filled with tears, and you ignored me!”
Anthony looked into my wet eyes, and his drooping mouth (caused by Parkinson’s disease) curved upwards into a smile. I realize that doesn’t sound like much but to get a smile from this previously jovial person who is now so disabled, is a small miracle. The only thing that annoys me about this smiling scenario is that I have to work very hard to get a smile out of Anthony whereas Ming just has to walk into his room and shake his hand and – BINGO – Anthony smiles – grr!
I’m so grateful for the decades of smiling we did before smiling became an effort for Anthony – not because of sadness but because of how PD affects the muscles of the face. So nowadays I come into his room with a huge smile every single day.
jmgoyder 