wings and things

My second home


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!


‘At home’

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.


Routine to the rescue!

I have never been that crazy about routine. As a younger person I had a reputation for being a bit erratic, despite being a nurse and then a lecturer (jobs in which I was never late but always nearly late!) When Anthony went into the nursing home (nearly two and a half years ago), there was a lot of grief, confusion and uncertainty, but no routine.

Now we have a routine and my heart has stopped racing around anxiously. It is so simple and easy and I wonder why I didn’t do this before but I guess the new routine coincides with a noticeable deterioration in Anthony’s mobility and mind function.

For a couple of weeks now, I have been going into the nursing home for most of the afternoon. In Anthony’s bedside cupboard I have lots of snack foods and drinks, cup-a-soups, brandy, wine, chocolates and sometimes I bring fresh cheese and olives.

If the heater isn’t turned on I reach up and press the button, after kissing my husband hello. Then I put a blanket from home on Anthony’s legs, adjust the chair, change the TV station to something I want to watch, move my chair right next to his and hold his hand.

Sometimes (lately) Anthony says, “How do you always know where to find me?” Sometimes he can’t get the words out – they stumble and crouch, frustrated, just above his lips. Sometimes he drools into what we call ‘the dribble rag’ because his swallowing reflexes have slowed down. Sometimes he tries to squeeze my hand in his and there is a small smile.

So I am now in the nursing home with Ants from 2-5pm most days and sometimes from noon. Does this make me a caring-wife hero-type? No! I don’t even understand what has happened to me to make me all-of-a-sudden so attentive! I love him, of course but I hated going into the nursing home for awhile/off and on. Now I actually can’t wait for 2pm every single day.

This routine has really helped me cope.

PS. This new routine means I don’t have much time atm to follow, comment on other blogs but you are all on my radar.