The other day, one of Anthony’s nephews and his wife visited us at the nursing home. We figured out that we probably hadn’t seen each other since Ants’ 75th. My mother also happened to be there, and Ming arrived soon after because he wanted to re-meet one of his many cousins.
As soon as this nephew entered the room, he sat right next to Anthony, shook his hand, made eye contact, and exclaimed, “Uncle Ants!” then reminisced about when they had been children. He talked directly TO Anthony and, even though Ants wasn’t very vocal, he was responsive and he easily recognised this lovely couple.
It was a wonderful hour or two and, as I was walking the nephew and his wife out to their car, she admitted to me that she’d been a bit nervous, had wanted to remember Anthony as he was, but now felt reassured about how he IS.
The next day, I reminded Anthony of this visit, and his three-syllable, whispered response was “DELIGHTFUL”.
Okay, so that should be the punchline, but it isn’t. What I have learned from this visit, and from the frequent visits of other relatives and friends, is that speaking TO Anthony, no matter how unresponsive he seems, is vital.
It is unavoidable, of course, that, in a situation like this, we will also speak ABOUT him in front of him and I always find this TO-versus-ABOUT very difficult. It feels a bit disloyal to me; that weird scenario between being with the person who is being spoken to versus the scenario in which the person is being spoken about.
jmgoyder 
I was in a situation a year or so ago where I was bringing something needed to an old friend–a very talented musician and intellectual who had succumbed to Parkinson’s. I had not seen him in a long time and was so shocked at the state he was in. No one had told me he was still in there, not even the caretaker in the room. He could not respond to me or keep his head up, and I did not know what to do. I assumed he had lost much mental capacity as well as physical. How shocked I was a short time later when he posted s political commentary on FB that was the old articulate fellow I knew! He was in there still, and that taught me a lesson.
I am in tears reading this – a beautiful reminder.
A week before my mother died, she had more clarity than I had seen in a long time during one of our last visits. She nodded and whispered with understanding – I regretting all the times I had talked around her, assuming she was incapable of understanding me. It turned out she heard so much more than I realized. I look back and wish I had talked to her more. You are doing wonderful things with Anthony, Julie. I know you writing and wisdom will help so many other people, too.
Judy, knowing you as I do, your mother would have appreciated every breath of time you took to be there with her.
It’s all very trickybut I am sure that you manage it the best way you can. What a lovely nephew you have.
Ants is lucky in having such a large, extended family!
I smiled about Anthony’s response. How DELIGHTFUL 🙂
xxx
how wonderful. i’m sure it is always a balancing act, until people understand that he enjoys them so, even though he can’t always respond in a way they were used to. the talking about instead of to someone happens with children as well, i think that people forget that they are living, breathing people, who enjoy and expect people to talk to them, not about them.
It is definitely a bit of a conundrum now that Ants has become so silent, but it is lovely when the magic happens.
I think it’s imperative that visitors speak to Ants (or any other person with debilitating and/or declining physical condition for that matter).
They may not respond much and seemingly might not comprehend what’s being said, but I believe they take in more than it appears. To be honest, I think its actually rude of people to talk over others.
I well understand how some young(er) people with not much experience with the chronically ill may seem apprehensive or unable to carry a one-sided conversation, but they really should learn how to do it.
It’s happens a lot as one ages.
The worst thing now is that Ants has become a kind of fearful object – of pity, of mystery … I’m not sure!
Many years ago I worked in ‘house keeping’ in a nursing facility. There was a woman there, she was non communicative. I knew absolutely nothing about anything back then. I used to go in to clean her room. No one told me anything about her. No one was ever there. I felt like I was intruding. I used to whisper “hi” to her as I cleaned because I didn’t know if I should talk to her or not. The things in life I cringe about…..I sometimes think of her, and imagine how it might have been if I had gone in chattering about the day, just sharing stuff with her. It’s one of my regrets.
You have reminded me of my nursing home days of way back. You also remind me of me!
There is this connection Julie. 🙂
Yeah, I can see why speaking about him in front of him would seem wrong in some way Julie. ❤
Diana xo
Now that he is so silent, it’s difficult to avoid.
This is a lesson I learned when I used to take my mother to the doctor. Inevitably, the doctors would ask their questions of me. I finally started refusing to answer, telling them, “I don’t know. Why don’t you ask her?” It’s just so dismissive. Sometimes it’s necessary, of course — but talking to someone — even someone who’s comatose — is important.
I am glad you started refusing to answer – good call!
How wonderful that so many come to see and spend time with you and Anthony.
I’ve come to think of the disassociation as more a defensive reaction then disrespect. Most of us don’t know how to act around death and serious illness until we have had to deal with it up close and personally ourselves. Stress and painful emotions are running high. Fears and emotional overload comes into play and so we put up barriers. It’s a learning experience we all need to have but no one wants it.
Having been up close and personal with it too many times (4 of my husbands immediate family) in the last 6 years I’ve seen (been guilty of) the disassociation coming from the seriously ill and family also. Pushing others away (consciously and unconsciously) can be the response to fear and not wanting to deal with others emotional pain etc. After the latest extensive caregiving and recent passing of my MIL I realized how all the emotional pain and stress took over my life. Even when I thought I was handling things well many times I wasn’t.
One of my dearest uncles passed away in the midst of all of this last year and I was too overwhelmed to be there for him and his family. It is still painful for me. So I try not to judge anyone who shows up and does the best they can.
I’m so sorry you have lost so many people in such a short space of years.
I can’t tell you how much your book made a difference. We both had hit the wall (mentally and emotionally) and didn’t think we could handle any more. But reading We’ll Be Married In Freemantle helped me to reconnect with my MIL (she had alzheimers and was legally blind) and be more relaxed and present for her. Listening and seeing her stories as her need to communicate during that last month. Thank you for that wonderful gift!
In a Hospice scenario we never talk of a patient. Until the last breath we use the patients name and tell him/her what we are doing. The hearing goes last – long before the ability of the patient to communicate. We never discuss the patient’s condition with the family in front of the patient when they are no longer able to communicate. They have lost the ability to communicate and not their intellect. You are a wise and sensitive person and I salute you my friend.
I didn’t know that about the hearing. Thanks for this, Tersia xx
Yes it would feel odd to talk about him as if he isn’t there, talking to him for some of us would be the norm but there are people who would look at him and think why bother he won’t know any difference but like you I think he does know the difference. I have noticed that most of the staff at Nan’s nursing home talk to her when they are in her room and one male nursing sings to her which is nice Nan always liked to sing
I almost feel like I know your Nan!
I need to share with you
?
Too true … touchet …
Ha!