This afternoon Anthony and I had a case conference with one of the registered nurses (RN) at the nursing home. This kind of interview is done from time to time (I think it’s annually) so that residents and/or relatives can provide feedback about everything from the quality of meals to the aesthetics of the room to the drug regime etc.
Obviously the quality of care is paramount so I just pointed out that if the television is on, Ants can’t focus on the job of walking to the shower despite two helpers, because the noise of the TV confuses his senses. I also wanted it noted that he hallucinates; that he asks me for panadol regularly but, due to his verbal difficulties now, and dementia, and that farmer stoicism, would never ask for pain relief from anybody except me.
Anthony didn’t really understand what was going on but the RN and I continued to try to include him. I was sitting on the left arm of his armchair and the RN was facing us. She wrote everything down and conversed with us as a couple as much as she could but when it came to hospitalisation I said no.
The last question on the case conference form was palliative. I think this is now a standard question and I think I have been asked this same question on numerous occasions over the nearly four years that Anthony has been in the nursing home. I still haven’t provided an answer.
But today, when that question was asked, I cried a little bit, quite openly, and the beautiful RN, cried a little bit too when Anthony said:
“You’re crying because you’re under more undue stress than usual.”
jmgoyder 
What a very difficult time for you all, much sympathy. Loved the photograph, you looked so beautiful.
I just wasn’t expecting that question even though I have been asked it before.
My precious friend – an extract from our web page:- Palliative care does not mean the abandonment of a loved one. Palliative care does not kill – disease of the body kills. Put yourself in your precious Anthony’s position and decide whether you would want to be kept “breathing” if you were in his shoes. This is very hard but the issue becomes about the patient… You have to know that you will have to give Ants permission to go…
You are always in my prayers and thoughts. Much love my friend – as always!
Research published in the Journal of Pain and Symptom Management found that terminally-ill patients who received hospice care lived on average 29 days longer than those who did not opt for hospice near the end of life.
Source: National Hospice and Palliative Care Organization
Hospice care providers offer specialized knowledge and support at the end of life just as obstetricians and midwives lend support and expertise at the start of life. Hospice can reduce anxiety in both the terminally ill patient and his or her family by helping them make the most of the time remaining and achieve some level of acceptance.
When terminally ill patients, who are often already in a weakened physical and mental state, make the decision to receive hospice and palliative care instead of continued curative treatment, they avoid the dangers of over-treatment. In-home care from a hospice team often means the patient receives greater monitoring than he or she would in a hospital. In addition to focusing on the physical health and comfort of a patient, hospice care also focuses on the emotional needs and spiritual well-being of the terminally ill and their loved ones.
Since a hospice program offers substantial support and training for family caregivers, it also helps many patients feel less of a burden to their loved ones.
Thank you very much for this, Tersia. I’m a little bit too choked up atm to reply properly but your information and friendship helps so much!
it is a really, really hard thing.
Sure is!
Oh, Julie, it takes so much courage to refuse hospitalization. How I wish I had a beautiful RN crying with me when I had to make these decisions for my mom. I am grateful you had someone compassionate there beside you. Wow, Anthony’s comment was a bullseye. It would be easier if you were in denial, but you are aware of everything. Grief is horrible; it is a dark cloud. May love and sunshine banish it, as much as possible. Sending love.
You are right about Anthony’s comment! And you are right about all of the other things too. I am struggling a bit but okay xxx
Anthony loves you so much Julie. He always gets you.
I don’t usually cry in front of him but this time I couldn’t help it and he was immediately concerned – such a beautiful man!
He is beautiful. He’s so connected to you. He doesn’t want you to hurt.
It is the worst question and one where you may have to make the ultimate sacrifice of love for him and not for yourself. My parents faced the question together, well before the end. And they included us kids in the conversation. They both agreed and Dad never waivered in that decision for DNR. No, he told her. DNR No, she told the Hospice nurses. He chooses DNR. When the time did come though, the first thing she cried for the nurse to do was….resuscitate. We, her children, knowing his decision, had to wrap her in our collective embrace and help her remember it was his choice. But her crying for help was as automatic a response as the tears were. Regardless of their conversations, regardless of their decision, regardless of her knowing it was the best thing for him, she just wanted him alive. I have to tell you Jules, we kids felt like we let them both down, that we gave up too soon, that we had a hand in his dying, and it was awful. Mom let us off the hook, of course. She told each of us that she knew Dad’s choice and agreed with it. She knew it was the right thing to do and admitted that, when the question was asked, her and Dad answered intellectually. But when the time was upon her, she wanted the answer changed, because her heart was doing the talking. She told me weeks after, that she too felt she gave up too soon and should have fought for him. No, I had to tell her, it was his time and his choice was for her as much as it was for himself. Maybe I shouldn’t be saying all of this to you my lovely friend, except I know no matter what you decide, whether Anthony can help you decide it or not…DNR will always seem the wrong decision to your heart, even if it’s the right one for both of you. Talk to Ming also…you three will need to be as one. I love you
Thank you so much for your wisdom here, Rhonda. I am still grappling with the unexpectedness of my emotional response yesterday. What you describe here breaks my heart but gives me hope that I can be as wise as you are. Much love to you
As with everything else you’ve so bravely confronted Jules, you and Ants will decide what is best for your family. I wanted to share with you so you know you will always have (another) someone to talk to who understands. xoxo
Holding you and Ants in my ❤
You are very kind considering i am not a very responsive reader. Thx Paulette.
Oh. Many hugs.
Thank you.
A hard question to answer at any time.
I am going to do a bit of research about how this question is phrased universally.
I luckily haven’t had to face it yet myself so I can’t give you any help.
Huge hugs Jules xxoo
Thanks Laurie
what a lovely photo of happier times. It is hard to say you are ready to let go if and when the time comes
If he were in terrible pain, I could easily ‘let go’ but he isn’t.
That is the hardest question to answer. I love how Anthony sensed the situation…and the picture is gorgeous. Much love XX
Anthony continues to surprise us with his astute comments!
When the time comes you will know it and so will Ants right down there deep inside.. It is annual.. don’t sweat it – go sweat the little stuff like a good feather binding chicken feed! This one will work itself out.. The big ones always do.. God I wish I could meet you when I am in Aussie! c
I wish I could meet you too, Cecilia – so much!
I cannot begin to imagine how hard it must be for you to even think about such things with how much you love Anthony
You are such a brave lady to share this blog with the world. I’m sure you have helped a lot of people. You should be very proud of yourself. Love to you and your family x
What a beautiful and happy picture.
oh julie my heart is breaking as i read this. i am so grateful to be able to answer this question on my own. i have chosen not to be revived. this has to be the most difficult question you will ever answer. my heart hurts for you and yet i know you will come to the best conclusion for the man you love so much. sending you love and hugs
We all knew for 10 months that my Mum was terminal and yet – as intelligent as she was – she could not face that question and never signed off on it. Right until the end she wanted to be left with that hope. However, after a brief spell in hospital, she did request that she not be sent back there again. She realized then (when they could no longer do anything for her) that her time was drawing to a close and she did request that we keep her at home, if possible. We also did not want her to go through the trauma of ER ever again (as they always have to go through so many tests) and even taking her to the palliative care unit would have been traumatic for her. So, even though she never signed the DNR form, that was by default what happened, being home when things happened. She rapidly deteriorated over three days and the palliative care nurses were due to come to provide the stronger medication but she had other ideas as she did not want her bedroom turned into a hospital room and she slipped away quietly before they came. Julie, I am thinking about you as I know how difficult these questions are. There was this pain that went right into my chest whenever I thought about this with my Mum. It was something that I felt that I could never bear.
Thank you so much for being so generous with this heartbreaking story about your mother. I still haven’t signed off on that particular question.