September has been another learning experience.
Having decided he would like to die at home if possible, my husband is now under the care of the local hospice, with weeks left.
Infact, there are three main organisations now involved in his care: hospice, GP and district nurse team. This strange trinity do not seem to be able to share information with one another. Each one needed to come out for a fact finding introductory visit to learn about my husband's case and put it in their files - which my husband found very onerous as his cancer has left him with vision, hearing and speaking impairments. Between them, the hospice advise the GP on medications, the GP prescribes and the district nurse team administers treatments/injectable emergency medicines. Both hospice and district nurse have arranged equipment for home to make life easier, which is then delivered by a third party company.
In case of emergency we ring the hospice, who claim to offer 24/7 advice - but found that outside 8am-6pm you are most likely to get a message saying in patient staff are busy with other patients at the moment, please call back later. I once tried 111 but received the message that waiting times to speak to them were in excess of one hour, so they recommended you call 999 if urgent. (Calling 999 resulted in a 6 hour wait for paramedics, who then wanted to hospitalise my husband for a slighty raised temperature, which was not why we rang - he rightly refused to budge.) When I called the district nurse team for help with emergency injectable pain relief I was told I'd be called back by a clinician. After 30mins I rang again and the clinician apologised for being slow to respond and dispatch help, which eventually arrived just over 2.5 hrs after the call. So I have learnt that dying at home (even with emergency medication ready and help at the end of the phone) does involve waits of several hours for emergency pain relief, which my husband had probably not factored in to his decision to die at home.
Over the month he has progressively become confined to bed, so I have learned how difficult it is to change the bedding on a king size bed when the patient is no longer mobile. And how unpleasant it can be to share a bed with such an ill person. My vote is for a hospital bed and a single - but at this stage my husband's vote trumps mine, so sharing continues.
Having a husband dying at home quickly became very restrictive, isolating and boring for me - I am glad to be working from home some of the time. Without that bit of normality I think I would be struggling.
