He asked where Lorraine was. "Where's Lollipop?" I said she'd be dropping Emily off at school and then coming to us. "It's a pity we can't hear her more clearly when she comes in" he said, "Cos we could all shout 'hurray!' as she comes through the door otherwise".
Len (mum's cousin) came to see us with some brilliant old family photographs that he'd loaded onto CD for us. Dad isn't on any of them, but they're good pictures of mum's side of the family.
Maureen (Lorraine's mother-in-law) also dropped in to see Dad. He always liked to see her... he asked her to give him a kiss when she walked in. She was telling him about her trip to America and Canada on a cruise. She said that when they visited Niagra Falls, they'd seen a beautiful rainbow in the mist. Dad looked at mum and said "That must have been nice." As she left, Maureen said to him that she hoped he'd be looking down on rainbows soon. She was very upset afterward and told Lorraine that she didn't think Dad had too long left... she'd nursed for 40 years and so must know these things.
Gail, one of the District Nurses, arrived at the same time as the carers and they got Dad sorted out pretty quickly. He didn't want a lot doing. Gail came to speak to us and advised us that she was going to put Dad on to the Dying Pathway programme. This is a UK care plan for those in their last days and was devised in a hospital in Liverpool. The basic premise of this plan is to make dying patient's comfortable. It takes them off all non-essential meds (e.g. my Dad no longer uses his diuretics or inhalers) and puts them onto anticipatory drugs to relieve any symptoms that may cause discomfort (e.g. something to dry up secretions in the throat and chest and stop coughing). It also enables the nurses to have a very open conversation with the carers and family members about what is happening. And finally, this plan takes into account psychological and spiritual needs. Gail said she felt that if Dad had a week left in him, we'd be lucky.
It's funny because although we've had 5 months to prepare for this, it's still a shock and quite upsetting when you start to talk about Dad's time in terms of "days". I think a lot of the emotion is due to having been through so much with him these last months and staying so positive for him... whilst knowing that really all we were doing was keeping him comfy. We could never make Dad better. And whilst I don't feel any resentment of that (toward the disease) I think it is a tough mental battle for all involved. Talk about learning life skills!
Gail explained that the syringe driver would be started that afternoon. She just needed Dad's GP to sign off the plan paperwork. Dr Rathbone prescribed the anticipatory drugs needed for the driver: an anti nausea/vomiting drug; anti-secretion drug; sedative; pain relief. Lorraine and I took what I think is our last trip to Cooke's chemist.
Neil (our brother) came along today and sat doing the jigsaw for ages. He made huge progress with it... which is just as well cos Lorraine and I were starting to struggle. Finishing the jigsaw was Neil's contribution to Dad's last days as he doesn't really do any of the care/nursy type stuff. As he was leaving (late afternoon) Dad called him back in to the room and signalled him to wait a moment (talking was becoming a huge effort by now). "How's the big Jigsaw going?" He asked. Neil described where things were up to. Dad seemed content. We'd brought it in to show him at certain points in the day.
Last night, Dad had been asking for maps from his car. It turned out he wanted to see Queensbury Gardens and Marlborough Grove in Birkenhead - two places he'd lived in as a child and young man (with his mother). We couldn't find a Liverpool A-Z but we'd printed a multimap page off the internet with both a map and an aerial view of the actual road for Marlborough Grove. Couldn't find Queensbury Gardens (this is where Dad was born). Dad seemed satisfied with this. Today he'd said he wanted to show the doctor the picture of the house and kept talking about "up above". Mum recalls that he lived in an attic room and maybe he was talking about that. He was clearly thinking about his family at these times.
Gail came late afternoon to do the driver. I said to Dad that his injection was here and as she put it in he said "lovely, thanks". As she left his room Gail said goodbye, sleep well, and that she'd seem him soon. She shouted at him "And when I do, don't be giving me any al buck" (Al buck being scouse for back chat). Dad smiled and said he was looking forward to seeing her.
Before she left, Gail came in to speak to us. She told us that she didn't think Dad would last the night. This was a shock as earlier we'd been under the impression he had a few more days left. Gail has worked in Marie Curie Hospice and so I trusted her opinion. She said that she could be wrong, but that she'd be surprised if he was still with us when she was back on duty on Thursday. Ok, so that's two nights then! Which one will it be?
As we wandered in and out of his room, Dad started to sleep more and more and respond less to us. At one point he asked me to confirm that Lorraine and I were not twins! I said no, and he shook his head and said he should have known by our ages. He also told Lorraine that I tell fibs! But I think he was talking about the jigsaw... as I'd been saying how well it was coming along.
The jigsaw is becoming symbolic, I feel. We speak of it so often with Dad and I think what we're all saying is that when the jigsaw is done, that is time for Dad to go.
I feel that my recollection of today is all over place, chronologically speaking, but I'm working retrospectively, from notes I jotted in my book at the time. Please forgive any errors. Oh - and a thousand apologies for the awful punctuation (I know I have friends who may notice this!!!).
Late on tonight we started to use swabs to give Dad water. Gail had advised us to wrap some gauze around a small child's toothbrush and dip it in water. Mostly Dad would just open his mouth and we'd dab around, but tonight he gripped the gauze and sucked the water off. So I gave him a drop more. He relaxed back and said "Lovely".
At some point tonight I was alone with Dad and sat sobbing by his bed while he slept... I tried not to be too noisy as I didn't want him to hear my pain.
Mum had been in and sung to Dad - How do you talk to an Angel. This was one of the few songs my Dad ever sang as he didn't have a great voice and could never remember past the first line! Funny that, considering how much he loved music. In fact, last year, he listened to every single one of his CDs over a period of a few weeks. When Lorraine asked him why, he just said: No reason, I just did. I wonder if he knew..........?
Anyway, Mum said he smiled and nodded as she sang, and when she finished she told him "I'm not as good as you". He smiled again.
When a patient is put on the Pathway, District Nurses call at night to check on them. Ours came quite early to see Dad, about 8-ish. They were happy with Dad's condition but he'd slumped down to the right and they tried to lift his head back to make him more streamlined. As soon as they touched him he started to "cry" and whimper. So they let go. Dad is clearly beyond the stage of being messed around with.
Neil came back to do more jigsaw! Yay! As he left we told Dad he was going and Dad nodded. So he still hears us and can communicate to some extent.
Tonight was Lorraine's turn for vigil, so I went to bed at midnight. I slept until 3 and looked in on them... everything was ok. At 3.30am Dad started coughing and so I got up and sat with Lorraine. We just chatted and drank coffee all night. Dad didn't rouse if we spoke to him. He was doing what they call "Cheyne Stoke" breathing. This pattern involves taking a breath and then a long pause before the next. It is difficult to watch when you are expecting somebody to die as you don't know which breath is the last! However, we discovered that we could see Dad's heartbeat under his vest and napkin. We tried to take his heart rate but we ended up just concluding that it was "very fast". So the heartbeat reassured us during pauses in breathing.
I have to explain at this point that Dad spent his last few months wearing very little! Sometime in about mid-March he dispensed with wearing his tops as he felt too warm and uncomfy in them (we had a very warm spring). Not long after that, the Nurses recommended that we stop putting his shorts on him as they were starting to irritate his skin around the waistband and could result in pressure sores. So he spent his time in a white cotton vest and a "modesty pad" loincloth that we devised from a white cotton pad. He resembled a cross between Mahatma Ghandi and Onslow from Keeping Up Appearances!! To accesssorize this outfit, Dad wore a green square table napkin across his chest and under his chin. This started out being there just at mealtimes, to catch any spills, but gradually became a permanent presence. Sort of like Dad's little comfort blanket... he wouldn't let us move it. I went to take it off in his last day and then put it back quickly.
Mum came in at 6am and said good morning. Dad was "asleep" but I told him mum was here and he opened his eyes and mouthed "Morning". This was the last Dad spoke.
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