Wednesday
The GP saw Benedict Ambrose when I wasn't at home. Apparently he told BA he shouldn't lie in bed all day. He examined B.A.'s skeletal frame (but didn't weigh him) and prescribed him Ensure Plus.
I was at Polish class, stuffing my head with useful work-related Polish. When I came home, BA told me he wanted to sleep, so instead of making his breakfast as usual, I got down to my work for the day.
My goal was to get the work done without distractions. To have a good work day.
I think I got B.A. to take some exercise. He tottered down the stairs and got, if it was like other days, up to 8 times around the front lawn. Then I sat him down in front of our big computer monitor and found something on BBC iPlayer for him to watch and started making dinner.
While I was making dinner, BA, who hadn't eaten all day, was violently ill. When I came into the sitting room, I found him with green-brown liquid all over his clothes, and after I ran for the basin, he was sick again.
I took him to the bathroom, and took off his clothes, and generally cleaned him up, and since he was there and I could, I got him to stand on the scales.
I had promised myself that if his weight fell below 100 lbs, I would get him into the hospital.
He was 97.5 lbs.
I called the National Health Service Emergency Hotline, leaving B.A. cranky in the bathroom with no shirt on, until I realised he was cold and helped him into bed. The NHS was not interested in his weight; they wanted to know if he had vomited blood. There was debate between BA and me as to what colour the vomit had been: tea or tea with milk? I had flushed most of the evidence, but some remained, and it looked brown to me.
The NHS said a doctor would be there within 4 hours, and indeed he arrived by half past eleven, remarking in his EU accent that it was really, really dark outside the House. He said B.A. could have thrown up because he hadn't eaten all day.
He didn't say it was my fault. But I knew that was my fault.
The emergency doctor didn't find much wrong with B.A. except that he needed some sugar. B.A. didn't want sugar. B.A. wanted the curried cabbage I had shoved off the heat when he was sick. He got cake instead.
I cancelled the next morning's Italian class.
Good work day; bad wife day.
Thursday
On Thursday I made B.A. a protein shake and watched him drink it. When he said that the bottom was gloopy, I put in more milk and mixed it up.
I told Facebook and other friends about B.A.'s weight, and the response was overwhelming. All Canadians and Americans were absolutely horrified: phrases like "passive euthanasia" and "he's dying" were tossed my way, and I literally collapsed. I spent an online work meeting facedown on the carpet.
I gave B.A. some curried cabbage for lunch. He threw up. I cleaned up and called the local clinic weeping. Then, because I thought he could die at any minute, I just got into bed with B.A. When I thought I was going to be sick too, I went to the bathroom and lay on the floor.
I really need to wash that floor.
A nice doctor called me back, and it was some time before he had a chance to tell me he wasn't our usual GP and had never seen Mr McLean. The GP was on holiday. I apologised and explained that I wanted to know why my dangerously underweight (and vomiting) husband wasn't admitted to hospital. The cover doctor explained that B.A. wasn't dangerously underweight, as he had been 60 kilos and now was 50 kilos--numbers which didn't seem right to me, but I always think in pounds, and B.A. understands only stones, and the doctor sounded so reassuring.
All the same, I ended up not at work but back in a chair at the foot of the bed. To B.A.'s mild surprise, I didn't make him go downstairs and outside for his daily exercise. Not only did I not have any fight left in me, I wasn't sure I could get down the stairs and around the yard myself. That said, I did walk into town to fill the Ensure Plus prescription.
B.A. wanted more curried cabbage for supper, so he had some, and kept it down, and watched more quality programming on BBC iPlayer
I dragged myself back to Facebook to apologise for scaring everyone. And then Ma Belle Soeur, our sister-in-law, asserted her medical knowledge and said, in effect, "He's really, really sick. Push the NHS."
Bad work day; goodish wife day, total collapse notwithstanding.
Friday
Friday was supposed to be a totally normal work day, the day I made up for the very little work I did on Thursday. I was scanning the day's headlines when Ma Belle Soeur appeared on Facebook (where I first collect headlines--its a bit like berry-picking) and started asking me what was wrong with B.A. and telling me how to push the NHS.
When she started, I was thinking, "She doesn't understand Our System, and none of the British doctors think it's worth taking him to the hospital." When she finished, I wrote to work asking for yet another Sick Day, left a message on the answering machine of Mr Frightfully Important Neurosurgeon, and went to sit with B.A.
B.A. had decided that he should sit in a chair, so that was an improvement. He was very happy to have me sit on a stool across from him and read him articles out of the new Spectator. I realised how bored and lonely B.A. had been lying in bed listening to the BBC while I worked in my office across the hall, and reflected on how horrible it was to have to choose, every day, between being a good employee and being a good wife. But I also reflected that just for the day, I was going to act as though it were B.A.'s last.
At some point, I got him back on the scales. The numbers were 6 stone 5... 6 stone...6....6 stone 8... They kept flickering because B.A. wobbled so much.
Ma Belle Soeur, meanwhile, also called Mr Frightfully Important Neurosurgeon, and he called her back in half an hour. What a thing it is to be a doctor. She had also written a letter for me to take to whichever doctor I got B.A. to next. However, when Mr FIN's secretary called me (about three hours after my first call, within an hour of my second), she said we should get a referral to the neurosurgery department by going to the nearest Emergency ward
B.A. was so distressed by the idea of having to sit in Emergency, potentially for hours and hours, that he went back to bed. I phone neighbours for a lift, printed off Ma Belle's Soeur's letter, packed B.A.'s basic emergency kit, and off we went, B.A. in his increasingly grubby white dressing down and red-and-black Woolrich slippers. I think that was about 3 PM.
At about 9 PM, B.A. was in a men's ward at the nearest hospital, having been x-rayed and CAT-scanned, having had vials of blood removed and the hated cannula added, having lain in a chilly hallways for a couple of hours, while I waited worriedly for someone to get me, and then continuing to lie in the hallway, only now with me for entertainment.
"And I didn't even throw up today," he moaned.
"I'm sorry," I told him. "But [Ma Belle Soeur] said."
B.A. agreed that the instructions of Ma Belle Soeur were paramount--heck, the admitting staff of the hospital seemed to think so too. And Mr Frightfully Important Neurosurgeon had actually called her in person and spoken to her on the phone. It is not surprising, therefore, that B.A. and I would do what she said.
I took a cab home in the pouring rain, prising open the big gates for the driver, and remaining thankfully in my seat as he undid the chain. When drivers don't ask about it, I always wonder what they think of my destination and whether they think I ought to give them a massive tip, living in a house like that.
Very bad work day; very good wife day.
This comment has been removed by a blog administrator.
ReplyDeleteDelighted you got him admitted Seraphic, gold star for La Belle Soeur. Fluids and an ng is what he needs until he starts eating enough, not just Ensures.
ReplyDeleteDon't mind the drama queens and their euthanasia comments. Good grief bite your tongues people and take a Valium.
I was thinking is there a kind of rehab hospital there where neuro can send him to help him get back on his feet? We have the National Rehab here that takes in patients from all over Ireland, neuro consultant reviews and accepts them.
Prayers offered for you both. Mind yourself too.
Sinéad.
Thanks, Sinéad. I have been feeling so awful, so guilty. I don't even know if I should be writing this stuff, except that maybe it will come in handy for other spouses going through the right thing.
DeleteThe big comfort, as always, is FAMILY. So many times I have seen waiting rooms crowded with multiple family members and felt so envious of them. Yesterday, though, B.A. and I could almost feel Nulli and Ma Belle Soeur with us in the hospital.
I am also envious of a Single colleague, not that she's not married to B.A., but that she can work with total attention and talent every day.
I didn't read your friends and family's comments but I think it's fair to say that BA has a responsibility to himself and to you that he needs to live up to. His recovery depends on eating whether he's hungry or not, keeping the pain under control enough to take five minute walks and actually taking those walks. I think you, however, might be the worst person to tell him this. Maybe your priest can deliver the message? But the situation is serious and it's no mercy to anyone to understate it.
DeletePrayers for you both. I really am sorry. The frustration of helplessness under the pressure of personal need against an unresponsive system is enormous. I really do sympathise.
ReplyDeleteThank you!
DeleteIt's not unresponsive. It's just overburdened and very possibly underfunded (or with funds wasted on ephemera), and so wheels must squeak to get grease, which is hard if you aren't naturally a squeaker. You have to be clever, and persistent, and make poor old nurses and doctors actually want to go the extra mile when they're tired.
ReplyDeleteWhere there is potential for growth, is for nurses and doctors to understand that spouses are an essential part of the care team. We aren't paid and we're not usually trained, but we're on call 24-7, 365 days a year, and this is probably our only patient, so we are a terrific tool in getting the patient better, on his feet, and out of the system. for as long as possible afterwards.
Your instincts were/are good. You just need more help. You knew BA would get better at home (true). You gave him anything he would eat - curried cabbage(!) You try to understand from the PATIENT's point of view what it is like to be sick, bored, feeling to be a burden, lack of autonomy, etc. In the US, a patient does not leave the hospital without a plan for followup visits to the house by health care workers for physical therapy, diet and nutrition, nurse review of blood pressure, etc - a whole (annoying but nec.) procession of people daily through the house who nevertheless perk up the patient. I do not know the Scottish system but perhaps while BA is in the hospital now you could arrange for these later visits at home? What aides does he work well with? Would they be interested in coming to the house for an hour, hours a week? The hospital for a short time is OK but it is when he gets home - esp. the first few weeks that are crucial. Hang in there! You are overworked and more exhausted than you know! It IS tough! and, as always sending prayers at daily mass for you and your husband
ReplyDeleteThank you. I will be a lot more strict about asking doctors and surgeons from now on about AFTER-CARE. I will also jot down the names of doctors I don't know, and scare up what resources are available for B.A. I know we are--he is-- already on a waiting list for physiotherapy. Another important thing to do is to get instructions IN WRITING to show B.A. when we have a difference in opinion over what he is supposed to do.
DeleteThis is not your fault. As you have said, you are doing two full time jobs. That being said, you are not managing. I'm sorry to put it so harshly. Bed rest is now recognized to be so dangerous that drs hardly ever recommend it for anyone. BA needs to have regular meals. He needs to get up frequently--not just once a day, once every few hours. I know you want to do it all yourself, but at this point, the responsible thing to do is to get a home health aid to take on some of these tasks. It might be expensive, but BA's life is at stake. Please take this comment in the spirit in which it was given. You both remain in my prayers. My husband was diagnosed with a chronic illness last year, and it was a frightening time for both of us.
ReplyDeleteThis might be a radical suggestion, but could you and BA move back to Canada? You'd have the support of your family and your work schedule might not be so grueling.
DeletePraying for you both - please keep us up to date!
ReplyDeletePraying! I second Sarah's suggestion as soon as BA is stable enough to take him home to Canada - you are doing an incredible job and you are an amazing wife, but it is very hard to work and care for someone without family support. We are not meant to manage such battles on our own - that is what God made the family for. You have such a strong, loving and practical family who would help you get him well, as they are already (how dearly must God love him to have given him you and your wonderful clan, knowing he would face this great battle for his life and need an army to fight for him!).
ReplyDeleteOh, Seraphic, I'm just now checking in after a busy couple of years. So much love to you. This is hard. It is not your fault that it's impossible. There is no way for you to be enough here, to do enough, to make it better all on your own.
ReplyDeleteEvery good thing you do counts. Focus on the good, and increase the good as best you can. With checklists, or having his best friend call and remind him to drink the Ensure, or or or. But give yourself grace.
In case it helps to know you aren't alone, a friend of mine blogs intermittently about her life with her husband, who has a malignant brain tumor, here: http://morningcoffee.blogspot.com/
Prayers for you both!
ReplyDelete