The Call Everyone Dreads
Its Thursday 13th of October and I found myself sitting in a chair in SR3 of the Evelyn Ward in Northwick Park hospital. I am sitting in this room because yesterday we had that call that every family member dreads. You should come to the hospital because your grandad is now on borrowed time………
So, how did we end up here you might be asking. On Saturday the 24th of September whilst in Cardiff dropping off my stepdaughter to her new digs at Uni, Rich and I were out having a meal and I get a message that say’s “Hi Sarah, sorry to message late, grandad has had an accident and gone to hospital with a suspected broken hip and possibly broken, leg, he’s gone to Northwick Park, he’ll be in the ambulance atm. I will let you know more as soon as I know”.
It’s never easy when you’re not close by to be able to rush and attend such emergencies. Something I am very aware off from my mum being poorly, but that’s another long story for another day! So, to cut a long story short we are still in the hospital and now sadly they have decided they are no longer able to help Gramps with medical help and they are just going to keep him free of pain until he passes away. So, he came in with a broken leg, this was operated on and mended. Physio did not go well on its first attempt and was then stopped due to the covid which he then caught. Gramps was put into isolation, and we could visit in twos only once a day. So, we tagged teamed in to see him. He ended up on oxygen and had tubes coming out of everywhere. He then developed a concern in his stomach which upon a scan it was found that he had a mass. It was 10 days in the decision making as to what the mass was and whether to operate. Which brings us to now, sadly nothing was done about the mass, even after him having had no food or fluids for days and experiencing a mouth and tongue like sandpaper. He finds himself now with an inoperable perforated bowel! He no longer has any tubes and is being cared for under the palliative operation and he can have whatever he likes and the goal is to keep him comfortable.
The Sad Truth…
…of this journey that so many people find themselves in around this ward and everywhere today is no one knows when you’re going to actually go! Last night Rich and I sat here, and I was torn as to stay or go. Not wanting him to be alone at the end of his life, how do you know when its ok to leave? The job I do involves lots of palliative and end of life care, so I asked myself what I would tell family members if it was someone we support. We had an amazing visit with him, and he was lucid and chatting and even kept checking I was ok. I should say at this point that Gramps lives with Vascular Dementia and has Macular Degeneration of the eyes, so can’t see us and hasn’t known who I am for about 3 years. He called me by my nickname and told me he loved me, so as last visits go it would have been a good one to end on. End of life though is not as simple as to say that was a good place to end so time to go! So, as I say I find myself sitting here in the room with Gramps having decided that I would get here early and stay all day, so he has company for the moments he is awake and unsure of where he is. Here I am now feeling like I needed to talk about this experience..
When I Got There!
I arrived just after 08:00am to find Gramps half out of bed and a little distressed wanting to get up. The team were very quick to react to his need to be moved. I noted that everything from a drink point of view indicated that he had no new fluids since the drinks I had given him last night. They had removed the last drip and freed him of the air boots he had on. He didn’t have the gloves on either which he hated but preventing him pulling out everything! So, the first thing he said to me clearly today was he just wants to die! Not something you want to hear but completely understandable in his situation. After getting settled and comfortable I gave him a drink and I washed his face. He has had a little bit of toast and a few swigs of tea, which he and I both agreed on, was disgusting! He had a little segment of orange and has since been sleeping. After reassuring him that if he wants to sleep and go as he indicated then he should try and sleep and see what happens.
Now its 09:40am and I’m sitting here waiting for that last breath! I am going to use this as an opportunity to express this journey for him and me as his Granddaughter. Chatting with Gramps in between his sleeping is something I am treasuring each time, even if we are repeating the topic and conversation, after all each time he shuts his eyes, it may be the last time they open!
Update at 12:05 is that the palliative team have been round to discuss options and to try and establish what would be best for Gramps from here. Exploring the options of Hospice Care, Care Home, or Home Care. Now if this was my customer, I would be saying Home Care as that’s what we do and we know we could work with the community teams of nurses to keep him comfortable. However, that is not an option here due to family dynamics (another very long story), so care home or hospice. Due to the nature that the condition Gramps has then Hospice is the no brainier. Having had a lucky opportunity to be here for that chat the professionals are saying Hospice, I agree! Now, sadly due to the long story I am not power of attorney! So, it’s over to my cousin for that decision! Gramps has been chatting in between sleeps. He has some lunch arrive but wasn’t interested in eating it. He’s gone from stripping off being too hot to now under two blankets. He has decided on another sleep before he will touch his lunch.
I always wonder if the decisions that we support our customers to make regarding the palliative care for their loved ones, would be easier if it was my own family. I am finding it easier with knowledge of what the journey could be and how quickly it could change. If you sat here today with my Grandad and didn’t know what was going on internally you would say he’s fine and just showing the traits of his dementia journey and his mobility down to his broken leg. I can imagine the possibilities for him as the rupture becomes worse. So, for me its easy to plan for the worst and hope for the best. As a family without the inside knowledge, it would be very hard to accept the potential outcomes. I think without knowledge we hope for the best and try to not think of the worst. It’s highlighted for me how important the support is that we offer families at this time, when it is their loved ones, we are caring for.
It’s now 20:40 and Gramps up until about an hour ago has been on a 10-minute cycle of sleeping for 6/7 minutes then chatting or getting fidgety. We have repositioned him and the ward has handed over to the night team and there is a little more clam on the ward. This seems to have settled him down. It’s that time of the day when decisions are made to stay or go for the night, hoping they will call if anything changes. But when you have an unexpected “Love you Kid” from him as he falls off to sleep what more could you ask for if it was your last goodbye. We planned to leave about 21:30 as he seems settled again and we can only hope to spend the day with him again tomorrow. I am grateful that Rich was here to keep me and Gramps company and hopefully we will get to see him again in the morning. Gramps woke up and asked where we were going to sleep, I told him we would head off soon. He told us to get off and get some sleep and he was going to sleep now, so we took our que with another love you exchanged as we left……..
