Five Words
Friday 14th March was the day everything changed.
We had been trying to meet the consultant Dr Evans for some time, and today was the day it was finally going to happen. Normally I would go with my daughter but this time she couldn't make it so I was on my own. I wanted to know what the plan was because Rosemarie had been in hospital for nearly a month now and although the basic pain problem seemed to be solved we had traded it for one where she couldn't walk. I wanted an intensive plan of PT - ideally when I could be there. I wanted them to stop arguing about the Sertraline dose and sort out what seemed to be the persistent delirium.
I was taken to the Day Room for the meeting. The PT was the only person there I knew. Dr Evans introduced a Sister Mabel whom I had not met before and a junior doctor whose name I didn't catch. Dr Evans did all the talking.
She started by summarising Rosemarie's condition and it was a brutally honest and uncompromising appraisal that blasted the foundations from under everything I had wanted from the meeting.
Advanced Dementia, Very intense needs. Emotionally labile. Complex 24 hour care needs.
Dr Evans didn't think Rosemarie had ever had delirium. It was just the next stage of the disease. She was losing muscle tone and becoming increasingly frail.
She wasn't coming home.
Everything seemed to give way underneath me. I was trying to listen, ask questions, make notes and deal with what I was being told. I tried to challenge some of the conclusions but my voice sounded shrill and desperate to my own ears. I had been clinging to the hope that if we could get Rosemarie walking we could manage the rest but I could feel that dream beiing ripped from me by the reality of the situation. I might be able to get care organised for while I was at work, but I would be alone in the evenings and at weekends. The flat is not big enough to have a live in carer, even if that could be funded. Rosemarie's emotional distress was exhausting to witness and try to deal with when encountered in hospital for a few hours at a time; I would have to cope with this all evening, all weekend and possibly most nights.
Dr Evans had a form in front of her: an application for NHS funded care at a specialist care home. Care Home. The twisting guilt in my stomach. I had promised her I would not put her in a home. The form involved detailing her condition in order to evaluate her entitlement and define the sort of care package. Nineteen pages of questions and evaluations. The methodical, relentless slamming of doors. Her condition precisely described by ticks in boxes and terse medical statements that were designed to strip away self delusion and expose the reality. I could not argue with a single mark on the paper.
Tears ran down my cheeks and I felt my voice falter. I explained that we would decide this as a family and I wouldn't sign anything until I had discussed this with my son and daughter.
Dr Evans passed me the form and I looked through it again. I felt strangely still and empty as I turned the pages, but heavy and dead inside when I read again five words near the bottom of page fifteen that tore away the last shreds of my hope.
End Of Life Care Plan.
We had been trying to meet the consultant Dr Evans for some time, and today was the day it was finally going to happen. Normally I would go with my daughter but this time she couldn't make it so I was on my own. I wanted to know what the plan was because Rosemarie had been in hospital for nearly a month now and although the basic pain problem seemed to be solved we had traded it for one where she couldn't walk. I wanted an intensive plan of PT - ideally when I could be there. I wanted them to stop arguing about the Sertraline dose and sort out what seemed to be the persistent delirium.
I was taken to the Day Room for the meeting. The PT was the only person there I knew. Dr Evans introduced a Sister Mabel whom I had not met before and a junior doctor whose name I didn't catch. Dr Evans did all the talking.
She started by summarising Rosemarie's condition and it was a brutally honest and uncompromising appraisal that blasted the foundations from under everything I had wanted from the meeting.
Advanced Dementia, Very intense needs. Emotionally labile. Complex 24 hour care needs.
Dr Evans didn't think Rosemarie had ever had delirium. It was just the next stage of the disease. She was losing muscle tone and becoming increasingly frail.
She wasn't coming home.
Everything seemed to give way underneath me. I was trying to listen, ask questions, make notes and deal with what I was being told. I tried to challenge some of the conclusions but my voice sounded shrill and desperate to my own ears. I had been clinging to the hope that if we could get Rosemarie walking we could manage the rest but I could feel that dream beiing ripped from me by the reality of the situation. I might be able to get care organised for while I was at work, but I would be alone in the evenings and at weekends. The flat is not big enough to have a live in carer, even if that could be funded. Rosemarie's emotional distress was exhausting to witness and try to deal with when encountered in hospital for a few hours at a time; I would have to cope with this all evening, all weekend and possibly most nights.
Dr Evans had a form in front of her: an application for NHS funded care at a specialist care home. Care Home. The twisting guilt in my stomach. I had promised her I would not put her in a home. The form involved detailing her condition in order to evaluate her entitlement and define the sort of care package. Nineteen pages of questions and evaluations. The methodical, relentless slamming of doors. Her condition precisely described by ticks in boxes and terse medical statements that were designed to strip away self delusion and expose the reality. I could not argue with a single mark on the paper.
Tears ran down my cheeks and I felt my voice falter. I explained that we would decide this as a family and I wouldn't sign anything until I had discussed this with my son and daughter.
Dr Evans passed me the form and I looked through it again. I felt strangely still and empty as I turned the pages, but heavy and dead inside when I read again five words near the bottom of page fifteen that tore away the last shreds of my hope.
End Of Life Care Plan.
posted by Other Kosh at 9:16 pm
1 Comments:
I am amazed there are no comments on your blog - or maybe you haven't put them up. Either way...people should be reading this and I hope it finds its way to them when they need it. I have been reading the entire blog from start to finish with tears streaming down my face. Tears for the bravery you have to summon on a daily basis and tears for the terrible sense of loss that comes through your words. You are not alone. You are very much loved and constantly thought of - and you are doing the most amazingly beautiful thing in caring so much for Rosemarie in these incredibly harrowing times. Sending you love, light, hugs, and everything in between. Mxx
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