When the day begins to close its curtains on the sun, people with advanced dementia often become restless. This kind of agitation is called ‘Sundowner syndrome’ and I’ve written about it before.
Anthony is definitely affected by the syndrome and, by around 4pm, he is quietly distressed and confused. I am adapting as well as I can to the difference between 11am and 5pm; i.e. at 11am Ants is lucid and able to express himself verbally, but by 3pm he sometimes thinks that the television show (at the moment Doc Martin) is actually happening in real life, and by 4pm he begins to descend into such a state of confusion that when I say, “Okay I’m off to get some wine”, he just replies, “Don’t be too long, Jules!”
The domestic and care staff at this nursing home are so wonderful and many have become friends; they all know that it is best to say to Anthony that ‘Jules will be back soon’.
Today I bumped into the wife of a beautiful man who, before he died a year ago, was next door to Anthony. She is elderly too and using a walking frame. Let’s call her Trudy.
Trudy: So how is your husband?
Me: Very confused now … well, you know how it is.
Trudy: You wonder what they are really thinking don’t you.
Me: Yes. You must miss him so much.
Trudy: It’s a year now.
And her eyes filled up.
Anthony and I are so lucky to have each other and he is luckier than most because he has a younger wife who is determined to ensure he is cared for. It is a bit of a unique situation because most of the residents’ spouses are either deceased or struggling with their own health challenges.
When I visited a totally lucid 95-year-old woman today, she expressed so much concern about her 70-ish son that I felt a bit awestruck by her courage and compassion.
Jane: He had to have a shoulder operation.
Me: So when will he be back?
Jane: So what’s your name again?
Me: Julie – you know, my husband is two rooms down. How’s your pain?
Jane: It’s not the pain, I just feel so exhausted all the time as if I’ve been run over by something.
Me: Like a truck?
MUTUAL LAUGHTER
I want to keep writing about this ongoing story of dementia; I want to critique the various interventions that are in place; but I also just want to BE with Ants.
jmgoyder 
beautiful colours in the sky…and such strength in you x
I rushed out last night to take the photo ha!
Perhaps sharing as you do here, you are doing both? Much love to you and Ants and Ming Jules. Your love shines so bright I can feel it all the way over here in the Northern Hemisphere!
The feeling is mutual, Louise!
The picture is exquisite just like the love story you and Anthony are living every day. Hugs Jules 🙂
I really think I should go outside and look at that sunset every night but it’s a bit cold!
I’m sure that it must be just as beautiful from the warmth of your home xxoo 🙂
That is a nice sunset photo , from home, (?) to go with the article. I found the Sundowner syndrome very interesting to observe when I worked in long-term care.Had to watch myself in some cases, slow down and take time to explain or get yelled at , or worse.
Yes it’s ‘my’ sunset haha. Glad you understand what I’m describing – thank you.
Lovely sunset, sorry about the syndrome and what it does to people.
I’m learning how to enter the surreality of this time of day.
We see the sundowner issue with my MIL. When she is here, we never watch news at night or heavy dramas. Even some music seem to affect her with more sadness and anxiety. Beautiful sunset!
The sundowner syndrome is now well-researched and very real. Knowing about it helps in coping with it I guess.
i noticed this too, when my mom was in assisted living. some babies also are subject to this syndrome interestingly enough )
I didn’t know that (re babies) – fascinating!
At least you are there to comfort the people you meet in the nursing home. You are at least showing the residents some attention.
I wonder how this affects people in the Northern Hemisphere. In Central Scotland it gets dark in mid-winter at around 4.00pm but in mid-summer it is after 11.00pm. This must be very confusing to those in nursing homes and perhaps a little distressing.
11pm! I am quite sure this must be distressing (and not just for people with dementia!)
You feel and care very deeply about others… It’s a good thing but maybe sometimes a bit overwhelming . Always remember to take care of ‘you’ too! Diane
It’s okay – I am getting into a better routine re myself.
Try not to let the dark nights get to you. You are needed. Beautiful picture.
Thanks Tom.
To take some time to just “BE” – great advice… thanks!.
It took me a long time to realise this – oh well, better late than never!
When my mother became ill and I cared for her, I started off being “busy”. I felt I needed to be “doing”. Finally I realized what she and I both needed, was for me to just sit with her. It was a peaceful time when I did that and accepted that.
You are doing awesome, and you are able to visit with others in the nursing home, laugh a little, love Ants. i swear you are Wonder Woman!!!! hugs
No, YOU are WonderWoman!
Lol, not even close lol
BS
Such interesting conversations
The best!
I just know in my heart of hearts that you are making a huge difference with this blog Julie! ❤
Diana xo
I can well understand where that 95 yr old lady is coming from. At a time when my 88 yr old Father should be visited and cared for by me, it is the other way around and my Father is helping me (via my younger brother).
I think the more people write about this debilitating condition called PD & Dementia, the more others will understand it. So please write on…….
On the other hand, time with Anthony should be highest on the agenda, especially now that each afternoon he slips a little more away.
Sometimes it’s nice – to just be.
The photograph is just beautiful and so is the post. Well done!
You are a comfort to Ants, Ming and to all of us who share this journey with you. ♥
Thank you for the time you do spend writing because it is so valuable to so many. But I know if you aren’t around for a time, you are spending time with Anthony, uninterrupted. I mean, we all know you’re his girl. ❤
I think that possibly for now you should keep a journal, sill it with your thoughts, stories and anecdotes, do not worry about trying to ‘write a book’, when the time is write you will sit and write the story of your lives of your journey through the dark days and the shining lights that have lighted you way and allowed you to find a way to ensure Ants has received every bit of love and care anyone could ever have. When that happens your story will ease the way for others starting on their own journey, they will know when they make hard choices and feel guilt they are not alone that what is best is not always what is easiest. But all that awaits in your future, for today and tomorrow and as many days months or years as you are blessed at Ants side is quite rightly where you should be, and we will still be around loitering, it does not matter with true friends if you talk everyday or once a year they are always still there xx