The fact that my daily routine now includes spending much of the day with Anthony in the nursing home means that I don’t see his deterioration except in tiny increments, day by day.
Yesterday one of our friends visited Ants and she was just leaving as I was arriving. She is the mother of one of my best friends, nearly Anthony’s age, and has her own health problems and yet still visits Anthony regularly – an unbelievably kind and generous person but today a bit uncertain.
“I don’t think he knew who I was, Julie,” she said.
“Maybe I talk too much and it upsets him,” she said.
“Can you let me know if my visits are helpful or not?” she asked.
She was quite distressed at Anthony’s unresponsiveness and wondered how I coped with going in every day. Didn’t it get me down? I told her that I hardly ever got down any more and actually looked forward to going into the nursing home. She looked as surprised as I feel about this miracle. I am surprised that my relatively newfound eagerness to get into town to see Anthony every day has been so sustainable because I was a bit nervous that it might kind of wear off!
Now I know for sure that it will never wear off probably because I’ve accepted the status quo and am prepared for what lies ahead. Our friend’s distress at seeing Ants so deteriorated yesterday, sort of chair-ridden and blank, unable to respond verbally and very sleepy, was only because she hadn’t seen him for a week or so. I guess it’s a bit like noticing how much a small child has grown if you haven’t seen that child for awhile; it’s a bit of a shock.
After our friend left, I went into Anthony’s room and said, “Didn’t you recognize M?” but he said yes he had. I could see, though, that what might have disturbed M was the increasingly blank expression on Anthony’s face which is partly due to his facial muscles not working because of the Parkinson’s disease, including not blinking (which makes him look both sad and angry), and partly due to the confusion of dementia.
Of course Anthony is only going to get worse, more confused, eventually bedridden and totally unresponsive, so I am developing a more tactile and rather boisterous relationship with him instead of pushing the conversation thing. After all, his voice is now so soft and his words often unformed, so we need to establish a way to communicate that transcends the verbal – almost like a code. This has included hand-holding, neck massaging, sitting on the arm of his chair with my hand on his head, and/or loudly beckoning him out of his slumber with a funny anecdote from the past, clowning around and bopping to music, asking him for advice with a nod or shake of his head, watching dvds of television series he used to love, laughing and being cheeky (I have a rather raucous laugh which I make the most of in order to see his slow smile), and lots and lots of hugging.
The following photo is my usual profile picture and it’s a bit of a shock to realize this was five years ago!
Then I just discovered this one, obviously taken seconds after the first photo. I can’t wait to show it to Anthony later today! I hope it will make him smile my smile.
jmgoyder 
I can hear your state of mind through my iPad and I am smiling Jules 😀
Me too and thanks Laurie.
There are so many similarities between Al’s MSA and Ants PD. The soft voice and masked face. I wish Al would have had PD instead of MSA, less brutal and painful. Love and hugs
MSA seems the cruellest of diseases and I am one of many who praise the way you have raised awareness, Terry!
It is hard for others I think because they’re not quite sure what to do when Anthony can’t respond. That’s why I guess your friend wondered if perhaps he was possibly not wanting visitors. Whereas you can do personal things for him and it comes so naturally … you’ve come to a very special place. When my Mom was in that kind of state, many just couldn’t bear to see her like that and they didn’t know what to say or do… even some of my brothers and one sister. … Have you ever thought of maybe writing something to help those who aren’t sure what’s going on or give them an idea of what they might do…such as reading to them.
When Mom went in first, I put a picture of her up and her home and wrote something about who she was… and a few other things… I did it for the caregivers actually, because all they would know of her is how she was then.. I wanted to give them a glimpse into who she was before she got sick.. I framed the picture and letter and put it above her bed… Just a thought Julie…you may not want to do that… .Diane
You are a genius = thanks for these ideas, Diane!
I think it’s so wise that you are developing a ‘code’ language. You’re such a smart lady Jules! ❤
Diana xo
It is an interesting phase!
You have thought it through so well, I admire you.
Thanks Susan.
i used to get panic calls from my aunt, after her monthly calls to my mom, who was traveling down the road of dementia. she would be worried and shocked at how much less response she got from her each time. and each time, i’d have to talk her down and let her know, this was a natural path her disease was taking and that calls were becoming difficult for my mom to manage. i experienced the same thing you are, with frequent visits in person, i grew used to the gradual decline and adapted as we went along. it sounds like you are doing the right thing for both of you, and it has developed over time and naturally with the progression of his disease. –
Yes, exactly!
There are so many that could benefit from reading this Julie. I hope they see it. I appreciate your truths in your writing, and your sharing of you and Anthony and Ming’s journey with us.
Thank you!!!
I love your positive and accepting attitude of what is. That is a very powerful message for me. thank you
Thank YOU!!
Sending you lotsa ❤
Thanks Paulette!
I can only be glad that you’re able to see Anthony daily, Julie, and able to have some sort of ‘conversation’ and communication. Being in such close contact means being able to detect the smallest sign of recognition. And…..of course, you can gradually adjust to his decline as time goes by.
But…..so sad for other folk who see him on an intermittent basis. The shock of each deterioration would be very apparent to their eyes.
Vicki
x
Yes, it is strange to see such shock.
Heartening to read.
Thanks Tom.
Your courage in facing this is so remarkable. I love how you’re finding non-verbal ways to communicate. It seems a very smart thing to do.
It’s working quite well so far!
It is sad to see those we love deteriorate but it doesn’t stop us loving them and wanting to see them often nanna has no idea who mum and I are but it doesn’t stop us going to see her each week
You are good people.
I marvel at your resilience and buoyancy of spirit, Julie. You are a living representative of the adage that love conquers all. Lovely…
Haha – thanks!!
some days i am so sleepy and can’t seem to wake, i have asked chris to be a bit more pro-active on these days. if he sits on the bed next to me just talks of this and that or asks me questions i can in time get more coherent and even get up to our surprise. other days nothing is going to make a difference. we too are just having to adjust in increments to the changes.
i so admire your willingness to push and adapt as needed. you are an amazing person and i hope all is well with you.
sending love and hugs as always
Sandra, you and Chris are such an example to me. I, too send love to you guys xxxxx
Sending you hugs, Julie. I admire your courage and tenacity. Love does indeed conquer all. 🙂 xx
Thank you!!!
You are so strong and such wonderful person. I can tell how much you love him from your blogs. I can’t imagin living your life and pray for grace, comfort and blessing of all sizes for you and Anthony. You have such a sweet, strong spirit despite a situation most people would react differently, in my experiance. You are on my prayer list, which I hope me saying that does not offend you.
I send my best wishes for Anthony and your family. I have worked and volunteered at nursing homes and have seen residents who are have PD and have rarely seen someone who has so much love and visitors. You are an amazing wife and I am inspired by you.
Thank you so much for this beautiful comment!