Hello
@GillP this is a tough decision and I can understand too, heart versus head. Like other members have said it is personal and depending on the circumstances. As Canary says decision can be changed and it is good to take your time. It can feel like the loneliest place in the world at the time.
My situation with my lovely Pa (Dad) was hia bit different from yours. I've got a couple of examples of what happened with my Pa.
In 2019 my Pa was in bed one morning and I was waiting for the carer to come to get Pa up washed dressed breakfast etc so that I could go to work.
I went in to check on Pa say see you later when something was not quite right with him, wasn't sure if he was having a seizure but his breathing was not right. The carer came upstairs then Pa was really poorly. Called 999 and they told me and the carer to do chest compressions until an ambulance came. I am usually a calm person but I was beside myself. I did the counting while the carer did the compressions. Pa was blue lighted to hospital.
They thought Pa was having a stroke and the Paramedics asked if a DNaR in place. I said no we had never discussed that before.
Anyway they said Pa hadn't had a stroke they were unsure what was wrong maybe a brain infection plus other infection but they did lots of tests and scans. My siblings were allowed to see Pa and my brother stayed with me. Pa was still on a different assessment ward at 9 pm at night. A consultant came to see Pa and thought Pa had delirium and a reaction to a drug that had been ok for his dementia but was then titrated up to a higher dose and it didn't agree with Pa.
I didn't want to leave Pa he was trying to get off the trolley bed. I asked the nurses to look out for him as he had Alzheimer's query Lewy Body dementia so certain drugs weren't good for him. ( Please don't lambast me I asked nicely and was worried,). My brother and I couldn't stay with Pa ? so had a sleepless night at home.
The next day I found out Pa had been transferred to a side room on a ward. I was at home and a nurse from the Dementia and Delirium outreach team rang to ask me what my Pa was usually like. He wasn't talking eating and seemed vacant. So I told him what Pa was like, liked his food to chat was mobile music TV going out for trip to the coast etc. He wasn't end of life. Then another nurse rang to say could I take some food in for Pa and sit with him encourage him to eat. I took Dad a little picnic of his favourite foods and found him sitting at the nurses station. I encouraged him to eat I was allowed to stay all day and my siblings came for the evening shift.
My Pa came home the next day. Had to get nurse to help us take Pa to the car. Pa was a bit vacant for a couple of days but got back to his usual self.
Then in June 2020 as I mentioned in life after Dementia- dealing with loss I have an account of what happened Pa and tribute to him.
I found my Pa had fallen out of bed between bed and drawers. Got him level on floor he was talking saying help me. Called family for help no answer at 1 am. Started to call for ambulance then found Pa having a seizure. Rang 999 they told me to put Pa in recovery. Paramedics teams came worked on Pa then took him away. I couldn't go with him due to Covid situation which broke my heart. A Dr rang me in early hours seizure had gone on for 45 mins and he had aspirated food into his lungsv which they were cleaning out. They asked me about Pa what he was like re his dementia and I told them Pa still had quality of life what he was like please give him a chance.
They put Pa into an induced coma and said the next ,24 hours were critical. The consultant then rang me later to say they would keep Pa under for 48 hours or so and try and bring Pa round they were doing brain tests to see if seizure was still going on. As you can imagine the anxiety went sky high counting to the deadline. Then the consultant rang to say they were giving him more time to come round as persons with dementia react differently to anaesthesia.
Then the big question about DNaR. The consultant said they would normally discuss this face to face but with Covid restrictions this was not possible. He said they would gradually bring my Pa round as it wasn't good to be on a ventilator for a long time and he could develop aspirational pneumonia. If Pa didn't respond that was my Pa saying he had had enough and it would be kind to let him go. Then if Pa went into cardiac arrest it would be kind not do resuscitation. I was in pieces and agreed was going to post on TP but couldn't get my thoughts down.
Anyway my Pa came round in ITU the nurses said he was quite a character and put the radio on for him and used to hum to himself
Pa made it out of ITU and the consultant checked with me to see if I agreed still with the DNaR and I said yes but I said that I wanted Pa to have other appropriate treatment and this was agreed.
Pa was doing well had some problem with swallowing and his speech was a little slurred. He was getting physio visit from Salt dietitian was sitting at the nurses station. I used to call him and sing to him. (Could not visit) There were few bits and pieces to sort but Doctor was talking about discharging to a care home , an assessment bed or home when Pa was ready. I was wary about assessment bed as they could not guarantee it was Covid free. Then I got a call to say Pa had fell out of bed and hurt his already damaged shoulder. He then was put on lidocaine patches for pain. He became a bit aggressive and started to pouch food was sleepy. I wanted to see Pa . Then the call two days later in early hours that Pa was very poorly could I go to the hospital. Pa died 15 minutes before I got there. He had deteriorated quickly as they were going to xray his chest and was distressed and died. It would not have been right to try and resuscitate Pa. They wanted to do a postmortem as Pa had deteriorated so quickly and there were signs that Pa may have developed mesothelioma but test was not done before he died. The postmortem may have showed that. Another difficult decision to make but after discussing this with friends and siblings who left decision to me I decided to leave Pa in peace.
Just wanted to show how different situations work out. Thinking of you @ GillP and hope your family support you and your OH remains well for some time. Sorry for the long post.
