Shirley was with me again. At least it's summer now so the decrepit little cottage is enjoying temperatures that are more conducive to human existence.
Simon lay in bed the whole time we were there which was the entire afternoon. We wanted to dismantle that bed and bring it downstairs so that he wouldn't have to tackle those rickety stairs again but he refused our offer. We worry that his death might come through falling down that terrible staircase in his physically weakened state. But no.
We discovered that he doesn't have a normal electricity supply contract with an energy firm. Instead he has a "pay as you go" meter into which a special USB stick is inserted from time to time. His credit had shrunk to just thirty nine pence so the meter desperately needed to be topped up. This involved me driving to the nearby village of Brandesburton where I bought £30 more credit for him. In the meantime, Shirley did some more cleaning.
We wanted him to have a bath while were there but again he said no. We worry about him slipping in the bath and banging his head. He might not be found until our next visit.
Last week, I contacted his local doctor and said clearly that I was very concerned about him and wondered whether or not there was any sort of plan in place for Simon's end of life care. The doctor said he would visit the next day but patient confidentiality rules meant he would not be able to discuss outcomes and observations with me. That seems a little crazy though of course I can appreciate the principle of the confidentiality rule.
What does he think of as he lies there? What is he remembering as he drifts between his dreamworld and the reality of a warm summer's afternoon in the heart of East Yorkshire - six miles from the sea.
When we got back to Sheffield, the traffic was snarled up because of a football match: Sweden v The Netherlands in the Women's Euros 2022. Some bright spark had dreamt up the idea of a "Fans' Walk" to Sheffield United's Stadium causing several road closures. As a result we did not have time to make and eat dinner at home and we were late for agreed babysitting duties at Phoebe's house. Grrrr!
Same as yesterday, the soothing photos were taken on Thursday's long walk.
Simon is determined to die as he lived I'm guessing. He sounds like a pain in the ass, sorry. I've had patients like him. He also sounds angry. It's so sad when people die like this, still pushing people away.
ReplyDeleteI am glad he has you and Shirley though. Even if he doesn't appreciate your help, he'd be worse off without you.
Your guesswork is pretty shrewd Miss Marple.
DeleteIs your brother's pain being addressed? Is he being seen by visiting health care? Or is that also information you cannot have? I don't know if he would agree but there is probably paperwork he could sign to have care decisions shared with you. It's frustrating not to be able to help to the extent that you wish. You can't even plan much if you aren't in the information loop.
ReplyDeleteI have the distinct feeling that he is being overlooked which is partly down to his attitude. Thankfully, I do not believe he is any real pain Jenny.
DeleteIt's difficult to deal with the irrational.
ReplyDeleteNever a truer word said.
DeleteThe doctor-patient stuff gets annoying. I get it when it involves HEALTH care but this is end of life care and the doctor should want you all on the same page to make the transition easier for your brother.
ReplyDeleteYou have got it in a nutshell Bob.
DeleteHas he got a Careline alarm? Doesn't sound like he has, but it would at least give you some sense of him being a bit safer? Perhaps he would reuse one anyway?
ReplyDeleteNo alarm Frances. To tell you the truth I have been very disappointed with the minimal support he has received from Macmillan.
DeleteSounds like the best thing for him now would be to have to go back into hospital.
ReplyDeleteMy instincts tell me he is close to the end but the human body does not give up easily. Shame the doctor and the Macmillan nurse apparently cannot see that he should not be on his own now.
DeleteIt's so distressing that Simon has refused all help and fails to realise how much you and Shirley are trying to help him. He probably just wants to be left in peace, so views your help as interference. There's not much you can do when he has adopted that mindset.
ReplyDeleteYour comment shows that you understand the situation very well Carol. It would be good if Death could embrace him kindly as he lies in that bed. I don't want him to die in a crumpled heap at the bottom of those terrible stairs.
DeleteI do hope Simon's end is peaceful, such as going to sleep and not waking up again. The thought of him slipping on stairs or in the bath is just awful.
ReplyDeleteThings move slowly in the medical world and you can only hope that Simon dies quietly in his bed. He is lucky that he has you two around. Your quiet photos compensate the worry.
ReplyDeleteMacmillan nurses are usually very good. Would your brother consider going in a hospice? Great photos.
ReplyDeleteHave you talked with McMillian staff? My mom was stubborn as well until we told our concerns to hospice and they in turn talked to her in a different way from their years of experience with these situations.
ReplyDeleteHow nice that you got some time with your sweet Phoebe to soothe your tired minds! Opposite ends of life witnessed in one day.
ReplyDeleteIt's so heartbreaking that he refuses the support of you and Shirley. The only caring people in his life. How isolated and lonely, waiting for death. I do hope it visits soon, and peacefully, to relieve him of the border of living.
ReplyDeleteXO
WWW
It's hard to want to help someone and have that help refused. I don't know the ins and outs of British law but it seems as a family member (and closest living relative?) you could try to argue for some standing to help direct your brother's care. But in the USA, I think you'd need a Living Will or Power of Attorney from your brother. Maybe it's the same here.
ReplyDeleteI am with Coppa‘s girl there; not much you can do when he sees any offer as interfering. You already do what you can and he resents that probably, too. Like you, I wish death will eventually come treading gently.
ReplyDeleteI am not sure that privacy rules here go as far as not being able to discuss a patient's health and future with the next of kin. Maybe they do. There are family conferences at hospitals where medical staff talk openly to family members. I can't remember but I expect he refused a place where he would be professionally cared for. It sounds like he really needs it.
ReplyDelete