B.A. was sick on Saturday afternoon, and I stared out the window, collecting my thoughts, before stripping B.A. and the bed, redressing B.A. and the bed, and then doing the laundry. B.A. wasn't sick in that way while in the hospital, so obviously there was something wrong with home. It was a very unwelcome thought.
After an online consultation with Ma Belle Soeur, I decided what was wrong was the bed: if B.A. lies down all the time, it is very bad for him. However, sitting up in bed is apparently very uncomfortable. A hospital bed costs £4,000, so that's out of the question. A domestic reclining bed, though less expensive, is still expensive--especially as we bought a new bed this year. Thus, tomorrow I will go to a special shop for the elderly and chronically ill for a back rest and see what else they have for sale that might be useful.
On bus rides to the hospital, I read Cal Newport's Deep Work, and while at home, I put its principles into practise. Deep Work teaches "knowledge workers" how to concentrate hard enough and long enough to get more work done in a shorter amount of time. Controlling how much time you spend on the internet--and how you spend it--is very important.
Now every morning, I write down all the tasks I have for the day, and I write a bullet-point plan for how I am going to do them, even outlining how I am going to structure complicated articles. This is very helpful later when I am tired.
I also identify which tasks are "deep work" tasks--tasks that take a lot of hard thinking--and give myself 90 minutes to do them, as 90 minutes is apparently the maximum time you can really concentrate on an intellectual task. After 90 minutes of hard work, I take a break with some "shallow work", like reading emails or finding stories to write about or even research. Research is easy compared to writing pieces.
Deep work is by definition cognitively challenging, and I've had a lot of practise thanks to (GUESS!) frequent study of Polish. As I may have mentioned before, my memory has improved really a lot, thanks to hours of memorising Polish grammar, vocabulary and occasionally even poems and songs. Even my memory for numbers has improved. I still find writing "hard news" difficult, but I hope that eventually it will become second-nature.
This week's challenge will be trying to keep up my work output after having returned to being B.A.'s primary caregiver.
I am very grateful to the nurses and doctors at the hospital for all the tests they did and all the meals they brought B.A., but I am sorry they didn't provide him with very much physiotherapy or exercise. When I visited, I would take him for a short walk down the hallways, getting a little farther each day, but his mobility was clearly much worse than it was before he was admitted. I also read to him from a children's chess book, as I am rather worried his poor shunted brain is being under stimulated. Learning to play chess will be good for both of us.
Meanwhile, the National Health Service is not the be-all and end-all of care. You really can't rely on doctors and nurses to do everything for your loved one in the UK: you have to do a lot yourself. You really do. Fortunately for "Central Belt" Scots over 65, many (if not all) local governments supply home nursing help. However, those under 65 seem to be out of luck. If you are chronically ill, under 65 and need help taking a bath, it's a good plan to be married to a relatively young and healthy person.
Meanwhile, the National Health Service is not the be-all and end-all of care. You really can't rely on doctors and nurses to do everything for your loved one in the UK: you have to do a lot yourself. You really do. Fortunately for "Central Belt" Scots over 65, many (if not all) local governments supply home nursing help. However, those under 65 seem to be out of luck. If you are chronically ill, under 65 and need help taking a bath, it's a good plan to be married to a relatively young and healthy person.
Meanwhile, the fund for Joe Baklinski, to which some of you generously donated, has topped the goal. His brother was hoping to raise $25,000 Canadian so that Joe, his wife and their eight children could see the winter out. (Joe's in construction, and in Canada that means you work hard all summer to make up for the lean winter.) Well, it was $26, 000 a few days ago, and I see that now that the goal is $30,000, there's $29, 096. That's very awesome, and I predict a very happy Christmas for all the kids.
B.A. was very pleased and edified that people donated to Joe's fund because he (B.A.) was sick. He said it meant that something good had come out of his illness. Fortunately for us, his employer has a very generous sick-leave provision, so we have a way to go before we have to start worrying about happy Christmases, etc.
In other news, I saw Cardinal Burke yesterday. Unfortunately I didn't get a chance to speak to him, but tomorrow I will write all about the Mass he celebrated in Glasgow.
Time to dig into savings for outside help. No matter how well organized you are, you need someone to do light housekeeping, laundry, grocery shopping, meals for BA and walking with him. Even if you get no gov't help,there must be some people in the neighborhood - old, young, retired? for hire for a few hours. (Would the church know people? Any nurses know aides, etc.) Otherwise BA may have to go back to the hospital. Let the next month be really intensive care (which he did NOT get the hospital). I've been thru this with 5 different relatives (mom, dad, aunts, etc.) I pray for you both daily and hope BA can get some relief (you too!) and health. God bless you both.
ReplyDeleteI agree. Not that we don't appreciate your consistency in combining care and work. Me and my Mom decided we had to arrange for a housekeeper for my ageing Grandparents, when I got down with anemia after having been exploited at work and my Mom got her wrist sprained. However, it is wiser to think about it yet before such things happen.
DeleteAll the best!
Adding my voice to the two wise commenters above. No matter how loving and devoted a wife you are, you cannot do everything by yourself because there are only 24 hours in a day, AND you need to work AND you need to sleep.
ReplyDeletePlease get some help in caring for BA. You can outsource, some cooking and some cleaning so that you have more time to spend with him. But while you are working, he will have to get up every hour or two (at most) and take a short walk. He will need regular meals. How you respond now will determine BA's quality of life in ten years, or even whether he is alive in ten years.
Also, please consider setting up a gofundme or youcaring account for you and BA. Your family, friends, and readers want to help. Make it easy for them.
Come on lads. Tone down the rhetoric. There's enough pressure in that house as it is without comments like these. Every family is different and what worked or went on in our own families doesn't necessarily mean anything pertinent for another family. Likewise with the medical projecting, each is case is different and his individual care needs are not known to us.
ReplyDeleteSinéad.
We did not mean to put any pressure here, just expressing our concern. Sorry if it sounds otherwise. However, anytime the issue of long-term care is discussed, it is obviously easy to focus on the care-taker solely. It is of course up to the Authoress, which comments she finds most helpful. But we all mean well.
DeleteTrue that I am not a doctor. True also that I have not ever seen BA in person. But the effects of prolonged bed rest on the chronically ill are well-documented and the fact that there are only 24 hours in a day is just a fact. Eight hours for work, eight hours for sleep, and then, eight hours for all of the Authoress's cooking, cleaning, and care-giving obligations. That is a lot for anyone to squeeze into eight hours.
DeleteI had a hysterectomy in the spring, and I was planning for at least 24 hours of hospital care. But no, as soon as I met my markers, the nurses packed me up and sent me home, even though I told them I had two pre-schoolers to care for at home. Nope, they said. I would recover much quicker if I went home and started attending to the kids. The only way they keep anyone in bed these days is if the danger is so great that hospitalization is to be preferred to being home and walking around.
That last line is so so untrue. Discharge decisions differ from team to team. Anyway we all wish them the best. Sinéad.
DeleteHi Seraphic! Longtime reader, and I'm so sorry about what's going on and how hard this all is. I've never been in your shoes exactly but I've been through similar with my mother (of course it's not the same as a spouse) and I'm very worried about both of you and want to tell you a few things I hope will help. 1. Don't be so frustrated with the NHS per se - I'm in the US and the truth is that however medical practitioners get paid, they aren't going to care the same way as family. Maybe in Canada things are somehow different, but I feel like you're wasting energy lamenting the NHS. Especially when it comes to dealing with a recalcitrant patient - a paid nurse, cna, etc. will invite and encourage a patient to get out of bed (for example) but only a family member will cajole, wheedle, weep with anger, etc. 2. You're in emergency mode right now, and as far as I can tell you have THREE jobs. Care for BA, care for yourself, and keep your job. Care for BA comes first, self care is second (through crucial). I don't think you have time for language study at the moment - I know you love it, but work you choose and love is still work - you should be resting when you aren't doing your other two jobs. And I know you need to keep your job and do right by your employer, but since they know what's going on, that's ALL you have to do. Keep regular hours, bang out the copy you need to, and get back to your life.
ReplyDeleteNo, coming from the US to the UK, the NHS is crap, I agree completely with Seraphic. The level of care, and even the basic level of hospital cleanliness is NOTHING like it is in the US, and you really really have to use the 'squeaky wheel' approach to get the care you need. Some of that is the 'lawsuit' culture, in that if someone dies from being discharged too early in the US, the hospital gets sued. Here, it's just an unfortunate statistic, and the pressure for beds trumps all. For example, I had a baby at 9am, and was discharged from hospital by noon the same day- why? Because I asked if I was going to get any lunch (I was hungry!). They would never 'let' you do that in the US. One errs on the side of over caution (the baby and I were fine), and the other on cost-saving optimism ( we probably would continue to be fine, but all the checks were carried out at the local doctor's office and not by someone who specializes in infants or even post-childbirth care).
ReplyDeleteHealth care in Canada, or at any rate the province of Ontario, falls between these two poles. It does of course 'ration' care, but on the other hand, no sick person would be sent home from hospital with so little provision for after-care even if his family did not think to inquire about what might be needed. Someone who had had a serious operation would, first of all, have been given physical therapy for up to a month afterwards if his condition required it. Before discharge, he and his family would have been visited by a social worker and nurse to ask about home conditions and recommend possible options to make his life easier. Once at home, a variety of service providers - some covered by OHIP (Ontario Health Insurance Plan), some not, depending on the severity of the case - would have been available for in-home visits to bathe, exercise and feed the patient, and to provide 'respite' care for the family members who looked after him, if they needed it.
ReplyDeleteIf Seraphic should ever wish to make use of this information I will make it available upon request but that is enough for now... ;)
Clio
Thank you for all your comments! I am too busy to say more. But I am so glad people are thinking about us and praying for us.
ReplyDeleteContinued prayers for fortitude and wisdom to know the right path- hiring help, scaling back on/quitting work, both, whatever it may be!
ReplyDelete