hwyaden Posted October 27, 2013 Share Posted October 27, 2013 hubby was really agitated when we visited today - seeing the kids really upset him and he just kept asking to go home. it was heartbreaking and the nurses had to come and try to calm him down and told me to give him a quick kiss goodbye and leave - it felt like when i left the kids on their first day at school. the nurse asked me when i got there if there was anything i could think of that would calm him down. i left them some of his favourite cd's but the only thing that relaxes him is his computer. he's becoming quite agressive with the staff and is being sedated at night. the nurse said she had no idea how long he'd be in hospital but it would probably be many more months given how serious his brain injury was. i'm just feeling so tired and at the end of my tether. we had to celebrate one of our kids' birthdays yesterday without him and the thought of not having him here at christmas is more than i can bear right now. i have to stay upbeat and positive for the kids but right now i just want to go to bed and cry. when does it start to get better? the nurse said two months is nothing in the recovery of someone with an injury like his but that two months have seemed like a lifetime. Quote Link to comment Share on other sites More sharing options...
Tina Posted October 27, 2013 Share Posted October 27, 2013 Bless you, this is such a heart breaking and hard time for you and your family. So very sad when you know how much he is missing you and wants to come home, but is not well enough yet. I am sure you and the nurses have tried to explain to him why he has to stay in hospital. Do you have a laptop/ipad he could try and use, or maybe have pictures and videos of you and the kids....just a thought. Would your husband be able to use one ? You mentioned using the computer calmed him. Not surprising you are getting so down.....its only natural for you to feel this way. You have been so strong and should be very proud of how you are keeping it all together. Don't be hard on yourself, you are doing all that you can and you must take time out for yourself too. Easy for me to say I know. Sending you lots of positive vibes and a huge hug, we are here for you xxx 1 Quote Link to comment Share on other sites More sharing options...
hwyaden Posted October 27, 2013 Author Share Posted October 27, 2013 he can't use anything at the moment as he has mittens on to stop him pulling his tubes out he must be bored to tears. i've sorted the tv out in his room but i don't think he's very interested in it. i just don't know what to do for him and just hope this is a phase that soon passes. i was hoping his trachy would have been out this week but they said today he's got another chest infection so i don't know if that will delay the removal again. Quote Link to comment Share on other sites More sharing options...
Winb143 Posted October 28, 2013 Share Posted October 28, 2013 Hw, I know it's hard for you and family, once he gets better, and he will, they will let him home. Once home you can get into a set routine and he will come on leaps and bounds. I had those silly gloves because I did what your hubby did and scratched myself. Can hubby ask for toilet? as I had UTI and it made me really ill (So I was told). Keep your chin up and tell hubby to get well xx Love to you and Family xx WinB143 xx xx Quote Link to comment Share on other sites More sharing options...
hwyaden Posted October 28, 2013 Author Share Posted October 28, 2013 no, he's wearing adult diapers which must be soul destroying for him. he seems to get through them at an alarming rate as every time we visit he's just wet or worse. Quote Link to comment Share on other sites More sharing options...
kempse Posted October 28, 2013 Share Posted October 28, 2013 Hi Gail, I'm not surprised you are beginning to feel down, you have an enormous amount to deal with. You have had your life turned upside down and yet somehow have to remain strong and continue being a wife and mother, trying to keep everything together. There is a huge amount of pressure in that and I think you are doing marvellously well. Tears are harmless and do actually help - hopefully you will feel more able to cope again soon, but if the feelings go on then don't struggle on alone, there must be a listening ear out there - your GP may be a good starting point if needs be. I hope your next visit is a bit better for you. Although time can appear like an eternity, it is your husbands best friend and with it he will continue to improve. Is there perhaps someone at the hospital that you can discuss your concerns with - it seems a lot you are carrying on your own shoulders right now. Best wishes, Take care, Sarah Quote Link to comment Share on other sites More sharing options...
Daffodil Posted October 28, 2013 Share Posted October 28, 2013 Gail. You poor love. You must be exhausted with all the visits , keeping it together at home and the emotions all this brings. sending a hug. Have you tried contacting Headway in your local area. They arent just for the survivors they are there for the family members too and it sounds to me like you could do with a bit of practical hands on bolstering and support. I personally found them incredibly practical and helpful. Exagerated emotions are normal behaviour. No fun to witness or be around , but I think most of us can hold our hands up as having had extreme and out of character behaviour esepcially early on after the bleed. I do hope they are still trying to establish the underlying cause for his agitated behaviour. Win quite rightly points out that she had an infection which until it was treated made it unbearable for her which is why she was trying to pull things out. Equally if he's wet all the time that wont be helping his state of mind or comfort. The hospital should be considering the reasons he is acting like this, is there something underlying and helping you to decide what they can do to manage his behaviour in a therepeutic way. If he has mittens on that limits what he can do so maybe its trying different things when he has them off to see what calms him. Try a colouring book maybe , i can't think of what else , others may have good suggestions. You shouldn't be having to solve it yourself and I do think you need an advocate to help you at the hospital maybe so you don't shoulder this all yourself which is why Headway might be helpful. Quote Link to comment Share on other sites More sharing options...
Karen Posted October 28, 2013 Share Posted October 28, 2013 Gail, Is he in his own room? I ask because when I was at a certain point, my husband brought in a radio and I developed a great new love listening to Radio 4 (couldn't do music, was too much!), where it's mainly talking and not visually stimulating like a TV as I couldn't focus up on it ... it also kept me company and I found it completely soothing. If you're worried about his diapers not being changed enough and you're noticing it .... this would be distressing in itself for any of us to sit or lie in, then have a word with the nursing staff, as this may not be helping his mood. Sending you hugs...xx Quote Link to comment Share on other sites More sharing options...
KeithH Posted October 28, 2013 Share Posted October 28, 2013 Hi Gail. How I hate reading posts like this. Firstly that nurse have no right to say that your Husband could be in for a long few months. Totally out of order. As for those diapers, WHY? what wrong with the bed sheet ones.? I can answer that--IT'S EASIER FOR NURSING STAFF!! All wrong Have you been in contact with his Doctor, Named nurse etc? Write down questions you want answered. He's getting Aggressive through Frustration, been there myself. I know how hard it is for you and your children. Are there any other Family Members or real good friends (This is the time to find out who they are) that would/could visit. Take some family pictures in and put by his bed, on the side he can see them all the time. Yes It'll be hard for him, but in a way it'll help him. My music helped me. Still prefer music to TV even now. Stay Strong, never be scared of asking questions There are a lot of SAH/Stroke Survivors, Carers & family members on this site that have been through a simular thing that your going through. So your not alone, and how silly your questions might seem, they've already been said. Take care. Quote Link to comment Share on other sites More sharing options...
hwyaden Posted October 28, 2013 Author Share Posted October 28, 2013 i will contact headway. he's in his own room and i've taken a radio and a load of his favourite cd's in for him. i asked him yesterday which cd's he wanted and he nodded at the ones i chose. i think i'm just having a blip. the only other family members who visit are his mum and sister and we haven't spoken in years. they let me know when they're going through my daughters. my mum and dad would love to visit him but the journey is too much for them at their age and my mum would just crumble if she saw him in hospital. they're in their late 80's and they'd never cope. they have been a fantastic support in other ways, funding a replacement car when mine bit the dust just after hubby was taken ill. the rest of his family just don't want to know and can't be bothered to visit so we're pretty much on our own. luckily my 3 eldest daughters are grown up and they've been amazing, looking after the little ones and going to the hospital with me. i just miss him so much and wish he was at least a bit closer if not at home. thanks for all your lovely words of encouragement. it has cheered me up no end. Quote Link to comment Share on other sites More sharing options...
paul99 Posted October 29, 2013 Share Posted October 29, 2013 hi Gail im sorry to hear how you are feeling, I had many times such as yourself it was a good friend who invited me to stay overnight with them both they took my phone and put me to bed , that really helped me it allowed me to have a good nights sleep which helped so much . the following day I felt better less stressed and more relaxed is there anyone who could give you that break and the children to allow you to get a good nights rest, because running a house and family is so draining you never rest. there could be many reasons as to how hubby is reacting frustration infection it could be the area of the bleed which may affect him and just down right boredom which neither you have any control over . I know I miss lin when im at the flat I've even cuddled a pillow when I try to sleep but I found it didn't work. the nurses are wrong to tell you hubbys going to be in hospital for months only the dr can make that call and I know they like to get the patient home as soon as possible. please make an appointment with the dr purposely to ask all your questions and get answers because it seems like you have been shut out unwittingly by the hospital staff write all your questions down before you go and if poss take one of your daughters for support. one thing maybe would help is take a child's basic jigsaw in with a pencil which he could hold in his mitted hands and the pencil to move the pieces around. im sorry I didn't pick up on this thread before today as lin has been causing concern at the home you have my number please use it despite what is going on with lin im always available to talk massive hugs and cuddles from both lin and me chin up girl Quote Link to comment Share on other sites More sharing options...
hwyaden Posted October 29, 2013 Author Share Posted October 29, 2013 thankyou - i will try to chase up the doctor. some news - i phoned today and they said he seems to have turned a corner communication-wise. he's no longer ignoring the staff, he's starting to interact with them and he's asking for the toilet. they've put a cap on his trachy so he's breathing by himself. i didn't get to see him today as his mother went so i can't wait until tomorrow's visiting!! i wonder if his increased aggression and awkwardness were anything to do with him having a leap in his recovery? it will be interesting to see how his moods are in the future just before he makes progress. they tested him to see if he could eat today and he's not quite ready yet, and also the psychiatrist saw him and said he's very happy with how his bi-polar is going. Quote Link to comment Share on other sites More sharing options...
Winb143 Posted October 29, 2013 Share Posted October 29, 2013 Hw, A story to cheer you up, I have been talking to my daughter about how long was I tube fed. She told me I was tube fed for approx. 3 months then when my daughter came in to see me she saw an empty yoghurt pot. I could eat soft foods firstly. I have not stopped eating since xx Hope hubby keeps onwards and upwards xx Love WinB143 xx Quote Link to comment Share on other sites More sharing options...
hwyaden Posted October 29, 2013 Author Share Posted October 29, 2013 awww i long for that day - will be looking out for a yogurt pot Quote Link to comment Share on other sites More sharing options...
sally Posted October 30, 2013 Share Posted October 30, 2013 (edited) My sister went through a very similar experience to your husband. Tracheotomy, mittens and distress! I suffered such pain watching her as I could only imagine how bad she must feel! Later, when she was clearer in her thinking, she let me know that she didn't remember any of it! She was still only semi conscious! I wanted to share this with you as I wish I had known this at the time! It is now 16 months later and she is so much better. The brain is amazing and distressing as it repairs, but please remember, every day it will be a tiny improvement! Look after yourself and cry as much as possible! Sally Edited October 30, 2013 by Skippy Quote Link to comment Share on other sites More sharing options...
KelBel Posted October 30, 2013 Share Posted October 30, 2013 Hi, I just caught up quickly on some of your posts. So sorry to hear about your hubby but I am pleased that he is now making some progress. I do hope that empty yogurt pot appears soon! Take care of yourself Kel x Quote Link to comment Share on other sites More sharing options...
hwyaden Posted October 30, 2013 Author Share Posted October 30, 2013 what a difference a couple of days make!!! when we saw hubby on sunday he was angry, agitated, unco-operative and we had to leave early. today it was like someone had flicked a switch on in his head!!!!!!!! he was jabbering non-stop for two hours. unfortunately i couldn't understand a word he was saying most of the time but it didn't matter - it was so lovely to hear him talking and watching his facial expressions when he talked was so funny as he was really animated! he had his trachy out today and you could still hear air going through the hole so i guess as that heals his speech will get clearer. they'd also taken his mitten off and let him sit on the edge of the bed. they're trying him with food and drink tomorrow Quote Link to comment Share on other sites More sharing options...
paul99 Posted October 30, 2013 Share Posted October 30, 2013 brilliant Gail hope for more good news soon as long as its not about hubby chasing the nurses down the ward that would be too much lol mind you that's not a bad idea lol Quote Link to comment Share on other sites More sharing options...
kempse Posted October 30, 2013 Share Posted October 30, 2013 So pleased to hear there was such an improvement today Gail:-D I'm sure the progress will have lifted your spirits. I hope he manages tomorrow's task ok. Sarah Quote Link to comment Share on other sites More sharing options...
hwyaden Posted October 31, 2013 Author Share Posted October 31, 2013 ha ha - i think he'd gladly chase the one who was looking after him yesterday, he seemed very taken with her Quote Link to comment Share on other sites More sharing options...
Winb143 Posted October 31, 2013 Share Posted October 31, 2013 Tell Hubby Well Done !! Also Well Done to You Hw now have a rest xx Love WinB143 xx xx Quote Link to comment Share on other sites More sharing options...
hwyaden Posted October 31, 2013 Author Share Posted October 31, 2013 yes miss!! Quote Link to comment Share on other sites More sharing options...
hwyaden Posted November 1, 2013 Author Share Posted November 1, 2013 what a busy visit tonight!! hubby was talking 10 to the dozen but is very confused. he was telling us how he's going to be dead in 72 hours because the gangsters are coming to kill him. he's also let all the hamsters go. when we got there he was on the phone trying to ring me (but was actually talking to the remote control for the bed). it's going to be a fun ride from here on in :biggrin: Quote Link to comment Share on other sites More sharing options...
Daffodil Posted November 2, 2013 Share Posted November 2, 2013 Oh Gail. Remember I told you my sister kidded me about hamsters...don't think she has visited hubby! Morphine if he is still on it has a lot to answer for when it comes to strange thoughts, I can vouch for that. Glad he is more chatty though and the trachy is capped. Onwards eh with baby steps. Hope you get to take some breaths. Quote Link to comment Share on other sites More sharing options...
hwyaden Posted November 3, 2013 Author Share Posted November 3, 2013 lol - has she been doing ward visits? Quote Link to comment Share on other sites More sharing options...
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