Strange how time runs away from you… or perhaps it waddles, a bit like a duck?
Karen is now talking a bit more and that familiar Geordie accent is creeping back in. Her right leg is showing definite signs of improvement, and it is only her right arm that remains stubborn.
Sadly I have had to contact the hospital yet again about her treatment. Items placed out of reach, on the side that isn’t functioning, and some rather ‘unnecessary’ remarks from nursing staff about how little (or much) she is eating, delivered with thinly veiled contempt. They don’t move her either, or sit her in a chair, just leave her lying in the same position 24/7 and I am always having to ask to get them to interact with her and change her position.
I know they are busy, and I know its been a bank holiday, but some of the staff definitely need to be more supportive and interactive, especially as, on a stroke ward, she’s the only one in her bay of 6 who has actually had a stroke and needs more help.
Me? Exhausted. Still can’t sleep properly, eating irregularly, and spending more nights in hotels than at home, and hotels which (a) aren’t great, and (b) charge a small fortune for rooms with air-conditioning you can’t actually move under 20!..
Having been in Karen’s situation, but four years on, I have something to tell you.
You and she are on a very long journey but you are going somewhere.
There will be truly horrid times, they won’t be the times to remember, but they are times to scream out about. Times to tell that terrible tale. There are ears which hear. Make a noise.
You are not alone, you have one another, but furthermore you are part of a huge group. We are working our way forwards, no going back. Literally millions of us.
You are headed towards improvement as we all are. You will have good news, you will break new ground, make fresh discoveries.
So keep telling your story, someone really does want to know.
I’ll wish you well, but this is not the end. It is a beginning and we are building for better.
So glad to hear of Karen’s progress. She is doing well it seems from the first traumatic time for you both. I’m pleased she is moving forward. I lost my right side after my stroke, and walking is now very difficult for me, but I do have feeling and movement in my right side, apart from my right hand suddenly opening up on it’s own accord, I get by slowly. I wish you both well, it will be a tough road to travel, but travel it together with positivity and life will settle down in it’s own way as you learn to live with the ups and downs of stroke recovery. Take care and look after each other
Physios tell me that arms take longer than legs, but all seems to be going the right way, from what you say. Lots of my friends became nurses, and part of their trainig was to spend a day - not even a day and a night, wwhich would be helpful - in bed, being fed and bedpanned, so they’d know how it was. IMO that should be a part of modern nursing training, as I found the lack of empathy and consideration was marked. Things were always being put out of my reach, and nobody understood about hearing aids - when I don’t have them in, I can’t hear you ! Some nurses are naturally empathetic and caring - others are in the wrong job and haven’t had proper training - what you are finding is not unusual. But your good lady has you to advocate for her, so don’t feel shy about doing so. She is very fortunate to have you.
Sounds like Karen is making some good progress at this early stage. I believe arms take longer than legs to improve so don’t despair about that.
I found the nursing staff put things on my affected side to encourage me to try & use it. They drove me nuts every time they walked past saying use your left hand. The thing I found most annoying was when they left anything that needed opening without opening it. I made a right mess with yoghurt & similar for a while until I found a usefor my knees.
Keep going it’s all heading in the right direction.
Well, I rarely touched the hospital food for my seven day stay. I’d have only coffee in the morning and soup later on. The only solid I ate was on the day they did fish and chips. I got fussed over everyday because of my eating habits but my body knows what it needs, so I had to just ignore their digs.
Good morning to you both. I hope Karen is progressing a little further every day, and you are getting the support to input into Karen’s care and recovery too. It will be a long journey, but Karen has fought her way back from that first day and with your love, help and encouragement, let’s hope weeks 6 and 7 will show further improvement in her recovery however big or small they maybe it. Remember it is a slow process but its good to hear of her improvement so far and well done Karen! Look after yourself as well you need your strength and resilience too. Take care
Support can be a double edged sword. I get plenty of well meaning advice from people with no experience of anything like this, and it can be hard to say to Karen’s family and friends that their frustrations just put more pressure on me.
I’ve already had to complain twice and still things are happening that shouldn’t be, and it’s exhausting having to repeat myself to nurses and doctors and dieticians and physios, because note taking seems to be out of favour.
Karen is doing okay. She doesn’t recall any of our holidays and struggles to find the right word and sometimes I think they expect a bit much too soon, but her right leg is improving, her right arm is just beginning to stir, and her voice is better every day. I think she’s done brilliantly since her stroke, and whilst we all love her to make a miraculous recovery, a bit of patience in some quarters would be a great help.
I hear you. I know from my stroke how I suddenly found myself utterly dependent on other people and I will admit that until I had my stroke, I never realised how much of us it takes from us. It strips us of our speech, use of limbs, memories, dignity and life as we knew it. I understand people’s frustrations but it needs to be explained to them (the family), loud and clear, that progress is slow, confusing, frustrating and quite honestly difficult!! Having a stroke isn’t just about the brain injury, it is the whole and complete person that has been affected. Maybe, if you feel you can tell the family that you have plenty to do with supporting and being with Karen without their anger and frustrations spilling onto you. Ask them to read leaflets or gain advice from the stroke association regarding the progress of stroke survivors. Unfortunately, there is no quick fix and you need space to understand and accept the difficulties you both now face. Tell them you will update them when you have answers but in the meantime, and most importantly, allow you to be with Karen and do what you can for her now. I understand this may be difficult for you, but you have done wonders since that first day too, you’ve stood your ground and fought for better care. I hope you both continue to move forward. (No offence or patronising meant, I hope none taken)
