When I entered Anthony’s room the other day, his lunch had just been delivered but he was staring past the meal into space. So I pulled my chair close to his and began to feed him, spoonful by spoonful. Despite the way Parkinson’s disease has affected his facial musculature, he is still able to eat – to chew and swallow – but at times he seems to forget how to actually feed himself. He will often pick up a knife and poke at the food but not know what to do with it. Staff are aware that: (a) he still has a good appetite; and (b) he sometimes needs to be fed. So that is reassuring.
I compare Anthony’s increasing confusion about sustenance to my own hopeless sense of direction. When I was in Perth last week, I got lost several times on my way to various destinations. As soon as I knew I was lost, I became anxious, then went blank. Of course these situations were short-lived; nevertheless, they were a bit frightening because I didn’t quite know where I was.
Anthony often doesn’t quite know where he is. His list of possibilities include the following:
1. His childhood home in a country town down south.
2. The boarding school he went to as a child.
3. The boarding school he went to as a teenager.
4. A country mansion not far from here.
5. An historic hotel owned by a neighbour.
A couple of hours after I fed Ants his meal the other day, afternoon tea was delivered at about the same time my mother arrived to visit. Anthony has a sipper cup now but often cannot figure out how to use it. I took the lid off and tried to get him to sip but it was as if he didn’t remember how to do that either and some of the liquid spilled onto the feeder/bib. “Can’t you even drink now?” I exclaimed in frustration as the lukewarm tea continued to dribble out of his mouth. My mother remonstrated and I pulled myself together immediately.
I don’t like this impatient side of myself but, luckily, it doesn’t happen very often and of course is easily fixed with an apologetic hug. But I am now noticing within myself a strange, new disorientation; I fluctuate daily between a sense of desperation to see Anthony and a horrible reluctance. This means that lately I haven’t been visiting as often, or for as many hours, as usual.
Most probably, this is just a new phase. After all, Anthony is often asleep for hours now, unaware that I am sitting next to him with my hand on his shoulder. I think our phase of watching television series together has exhausted itself and I need to get back to more productive ideas of how to be in his room for long stretches of time. Scanning photos from the many photo albums I have stored in Anthony’s room will be my first task.
This afternoon I wanted to show Ants the more recent photos of the flourishing vegetable garden. But Anthony was too drowsy and incoherent which made me feel very tired and sad and, yes, disoriented too. I wanted (briefly) to just give up, whatever that means.
But then my mother sent me a photo of me with my first great nephew!
I have found my footing again.
Reorientation.
jmgoyder 
Oh Julie, your heart is so true.
I think we just need to give ourselves the same love and caring attention we give others so that we too can feel strong and present again.
I love how that beautiful photo gave you such healing medicine! Much love.
Thanks Louise. Lately it seems like as soon as I have accepted things/the status quo, some slight deterioration throws me and I flounder again. Much love to you my beautiful friend.
As he becomes advanced, you will become less patient. The reason is your brain works quick, it knows you don’t want to lose Ants, the way you know him, so you use the flight or fight method without realizing it . Hugs, it’s ok, just keep saying that word, sorry
You know more than anyone else what this stage is like. Thanks Terry xxx
What a joy to spend even a few moments with a beautiful baby!
And he is adorable!
I am finding it hard to find a printable word for you! I have deleted about five times. Suffice to say: It is %^!&* isn’t it!. But that shot of the baby in that FANTASTIC Australian verandah is wonderful.. c
You have made my day with this comment Cecilia!
Julie, I was very touched at how you related to Anthony’s disorientation by getting lost yourself. As much as the helps you relate to his condition, once again I mention that you are deeply grieving. Grief can swing through many emotions, as you probably know – denial, numbness, depression and anger. I think anger is one of the hardest things to deal with. You are not angry at Anthony and of course, it’s hard to keep it in check when you are furious at this unbearable situation. The worst part about your situation is that acceptance is so fleeting and unreachable. The progression of the disease and the fact that your needs have been supplanted makes it that way. So glad you can find footing with that beautiful grandnephew of yours!
All of your words here ring true, Judy. I am obviously having a bit of a grief-downer. Not sure what a grief-upper consists of but you are certainly part of that!
You battle so bravely, I am glad you rcovered yourself. What a dear little boy.
He is gorgeous and never stops smiling!
Hugs and lots of love from me to you
Tersia, you are so so so kind and I so admire what you have done in your neck of the woods. Julie x
The wobbly footing is a horrible feeling. I’m glad you are planted again.
Sort of! I am having a bit of a downer.
If I was there, I would just sit there with you. Maybe outside, watching the birds, drinking a cup of tea. We wouldn’t even have to talk. Just exist. And let the downer play out.
Be kind to yourself Julie.
You are doing the best you can in a difficult situation and there are bound to ‘off’ days.
It’s natural. I’m sure every other partner of someone with serious and/or declining health is exactly the same.
It’s like marriage. Give and take. Good and bad. High and Low.
Black and White.
The world is full of opposites.
Nothing ever stays the same and that…….is as it should be.
Sometimes it takes little battles with our inner selves to re-connect the dots and start the cycle all over again. In your case, its the joy of seeing your great nephew that re-set the cycle of life back on its tracks.
Perhaps it’s a good thing that you are changing your routine and not going in to see Anthony every single day. You need a little rest and a break sometime.
You need more me-time.
You need BALANCE.
Sending lots of love & hugs across the miles
Vicki
Thank you Vicki – I am actually feeling very low tonight so your comment means a lot. Jx
PS The veggie garden looks wonderful.
Yes – exciting!
Keep as steady as you can. You are needed.
Okay – trying.
We wish you all the best in your efforts.
Yeah it sucks when they sleep and don’t know we are there, when mum and I visit nan we don’t stay long as we both have a lot to do each day and nan is only awake for a few minutes at a time now so we go we wake her up and I feed her breakfast and then we leave but at least we go every week
I love your family!
it’s always a balancing act, the challenging parts as well as the joys. the trick is to remember the joys when in the midst of a huge challenge. hugs )
Thanks for the encouragement; I am struggling a bit.
How wonderful that your mom sent you just what you needed to feel reoriented!
Very timely!
You have not changed Jules…you are still the loving, compassionate, fighter, doting, thoughtful, attentive partner you’ve always been…it’s the disease that’s changed, and will continue to do so. Don’t be so hard on yourself on the days you’d like to smash that disease’s face into next week so much that you feel the anger and frustration before anything else. Look how easily you stepped back into your Julie shoes…all it took was a photo of a happy time. No one could ask for more…you give all you have to give and then some. Love you my friend.
Oh Rhonda – I don’t know how you manage to be so supportive of me when you have your own stuff to deal with. I so appreciate your friendship! Love you xxx
There is and always will be, room in my life, my world, for you Jules. I think of you all the time and only wish our little world were even smaller so we could see each other. Barring that…I’m never farther away than this. xoxo
I LOVE how your vegetable patch is coming along and your adorable great-nephew.
I am sure deep inside Anthony still shares these times with you in some small way.
what a wonderful picture! thank you for sharing what those of us on the other end know to be true. it does get harder as time goes on. i see it with my own family and know that this situation dragging on and on…… the daily stress. of course there is the part where we are sleeping. does he know you are there? maybe not, i do. i know when someone is there. i sleep better. i feel when i wake there he’ll be, waiting for me. sorry i am rambling. it is natural what you are going through but that doesn’t make it any easier. you are the kindest, bravest woman i know, with the exception of two others that are going through or have gone through similar situations.
i send you love and hugs my friend