It is nearly 9.30pm here and I just got a phone-call from the nurse-in-charge at the nursing home who wanted me to calm Anthony down because he had, once again, become aggressive and was very confused. Ming and I tried, on the phone, to talk him into going to bed but he just kept ranting and mumbling incoherently and Ming gave up. I then tried, over and over, to convince him that nobody was trying to hurt him and that the staff just wanted to put him to bed, but it became impossible, so I hung up and rang the nurse back and she said she’d never seen him like this (she is his favourite nurse).
I asked if I should come in but she said no and not to stress and they would sit him down in the foyer (where he was apparently standing and yelling) and wait for him to become too tired to resist going to bed. When I apologized to her, she was so reassuring that it would all be okay that I nearly burst into tears, and, when I said “I can’t bear it for him that he is becoming so distressed so often”, she said something comforting about how she and the staff knew him, and knew that this was different behaviour, and that they were sad too.
Once I’d hung up the phone, I marvelled that I had taken Anthony to a special friend’s 80th birthday party today and he/we had had a great time, despite him being in a wheelchair and not quite ‘with it’. In her speech, the birthday girl even thanked Ants for coming to the party and that really touched me (she and my ma have been friends forever).
It has been suggested to me that taking Anthony out might not be a good idea because, when I take him back to the nursing home, he seems more confused and exhausted than before, and he is, quite obviously, becoming a difficult patient/resident. But, what the hell – I WILL continue to take him out, and bring him home, because I love him and miss him and I want to hold his hand. (I have always found couples that constantly hold hands slightly nauseating – ha – but now I don’t!)
PS. If anyone calls me wonderful or amazing I will bop them! This is just how it is – how it is.
This photo is of Ants three years ago, on his 75th birthday. He turns 78 in a few weeks – quite a survivor!
jmgoyder 
Well I’m NOT going to tell you you are amazing or wonderful!!!! But I will say that Anthony’s hands are SO strong looking. Imagine the work they have mastered over the years. It’s no wonder you want to hold his hand.
Yes – I love his hands!
No words… just thoughts… Diane
That means a lot, Diane – thank you so much.
i’m sorry for this, but not surprised. those phone calls always had my stomach churning, and i hope they soon figure out a way to handle this themselves without having to call you each time. i found that maintaining routines helped a lot, anything out of the ordinary, even a pleasant trip out, sometimes cause anxiety and fury later. like a child with adhd, it is sadly just too much stimulus for them to handle and they will act out in negative ways in response to it. less change, quiet interactions, where he is comfortable and secure, will help a bit. hugs )
He has been prescribed something for these episodes but only when he needs it – that’s becoming more often now argh!
Does tiredness and over-stimulation (with a decreased capacity for stimulation for him) contribute to these episodes?
It’s possible although a few days previous he had one of these episodes in the evening and I hadn’t even seen him that day – who knows?
As much as being bopped in the head by you would be a new experience for me, I will refrain LOL!
Haha!
Holding hands is really nice. 🙂
I never used to do it much but now I do!
With dementia, one of the changes I see in pictures were “the eyes.” The vacant look was very sad for me. So when I look at this picture of Anthony – I see such sharp wisdom in his gaze. He has a slight smile. It’s almost like he’s thinking of something and you know what it is. That must be so hard to live without. Writing about the stress and loss is a wonderful outlet, Julie. Keep doing it. I appreciate your words.
And now his eyes are often blank or else seeming furious – staring.
I noticed with my mother that the eyes reflected all the stages: fear and terror, fury and desperation, and then dull resignation. But still, her love for me shined through the disease even in the darkest moments. I see you have that and it is such a blessing, isn’t it? I had often worried about the time that would come when she didn’t know who I was and I was fortunate that never happened. It was helpful for me to know that these were all stages. My mom’s paranoia did pass and so did the anger. I think the worst part is to see the suffering. That is torture in the purest sense. I hope this stage will pass soon.
Julie, Damn it you said I couldn’t use my favorite words when I describe you or respond to you. But I will say that Ants is lucky to be loved to the depth you love him. He may recognize less how outwardly, but his heart and soul beat because of the love you have for him. To be loved like that is such a wonderfui gift. Please take care, Bill
You are amazing and wonderful hahaha!
Keep on doing what you’re doing Jules – it is good for you both. I am of the view that they are far far better for everyone. Any other thought is just not even entering my mind. Much love, m
Yes, I will thank you Mimi.xxx
I think you should try to spend as much time as you can with him – just goes to show how much you love him.
I was thinking maybe I should make it at exactly that same time every day so it becomes part of a routine but I hate routine ha!
Have you spoken with his doctor about the possibility of this being a medication build up and if so is there something to do about it? Don’t bop me for speaking out. Sometimes this gets overlooked and polymeds with parkinson is a real problem, the side effects that is. No other comments about holding hands. Just sending good thoughts that perhaps you can get a handle on this…for now.
I am going to take him to his doctor next week to discuss this and I will mention what you said because I didn’t think of that. Thanks Paulette.
I’m so sorry this is happening. I know it is quite distressing for you and am sorry that you must go through this. I send you thoughts of love and comfort.
You are so kind – thank you.
Hope things are much better today.
When you talked about holding hands , that resonated with me. I remember a Jacques Brel video that played the “Grandfather Clock” about the passage of time and it showed an elderly couple walking down the street hand-in-hand. I knew an elderly couple that always held hands and I admired them for keeping the romance alive. When he walked into the room his wife would meet his gaze and both their eyes lit up -after 60 years of marriage.
Haha I love this!!
Thinking of you today.
Thanks so much.
You’re doing the best you can, in a very trying and emotionally draining situation, Julie. Hugs to you. I love holding hands with my hubby and would never want to stop. 🙂
I’ve never been mushy like I am now – weird!
Well I know you well and you are wonderful and amazing! So there!! Bop away!!
BOP!
Hard work for all concerned. Don’t forget to give yourself a wee break every now and again.
Okay – over here a wee break means a toilet break (sorry I couldn’t resist!)
Ha.
I love it when I see older couples holding hands in public. It’s just such a rare sight and reassuring that there’s Life, Love and Friendship after 70.
Remember a ways back I explained to you about Sun Downers and Parkinson’s Disease? It is very real and I have worked with it many, many times. Please read this so that you and the facility can understand and maybe be able to help him more.
http://what-when-how.com/parkinsons-disease/sundowning-parkinson%E2%80%99s-disease/
I do remember and thanks Terry. Do you think I should print this out for the nurses? Or would that seem presumptuous?
I think you should print it out. There is never too much knowledge!!!
Okay – will do – thanks again, Terry!
okay I won’t call you wonderful or amazing, but I am thinking it ((hugs))
BOP!
Yes it is just the way it is when you love someone, sorry to hear he had another episode
I guess they are going to become more frequent.
Don’t want to say you’re amazing you might want to “Bliksem” me (another good descriptive Afrikaans word) so instead I’ll say sterkte…. I know when my Dad had his stroke and was bed bound in a home, when we took him out for the day, that night he would be difficult… he suffer badly from dementia and I think could not fathom out why he was at home for a couple of hours and then returned… I’m sure this had something to do with it, but I didn’t care, he got to go home see his dogs that he loved and sit in his favourite chair… the nurses had to handle the problem when he returned to the home, but that is what we paid for… it was heart breaking at times when he didn’t want to go back… must have felt like me all my school life having to return to boarding school…
Yes that is exactly what it is like for us and Ants often calls the nursing home ‘school’ (he was a boarding school kid too). Oh I would never ‘Bliksem’ you!
My dear Jules, it is time to change Ants’ medication. He needs to go on an anti-psychotic tablet (like Seroquel). The dementia is attacking the brain. It is always worse at night. “Sundowner syndrome
He has been prescribed with something for this but only PRN so I have been trying to get them to give it to him every evening, although last night he was perfectly okay and even apologized to the nurse he’d yelled at the previous night – such an unpredictable disease. Thanks Tersia xxx
you are wonderful and amazing! so come to georgia and bop me:) i have to say i am so with you on this, not taking him out may make things easier for some of the staff but that is not the priority. i am sending big hugs and much love
My mom turned 90 on Jan 2nd, and she has more hostile days now than good ones. But the good ones are wonderful. I hope they find a shift in meds or routine that make Anthony feel more secure. Good luck to you both!