I am happy my husband is homme and we are trying to cope. we changed carers and the new carers are helpful and caring . I love my husband so much but he is in so much pain and his anger is growing with his pain. I called GP and said he has stopped eating due to pain after eating and they just suggested giving him fruits, he is right side paralized and his right shoulder and hip is very painful to touch, so carers having diffficulty moving him. called 999 and ambulance said to give him pain meds and that his heart and bp is ok and they will not take him hospital. I am very stressed as I just cannot get help for him. I forget his stroke make him more confused so trying to explain that there is no GP on weekend is so hard , he cannot talk and makes it harder to understand what he wants.to eat.
Imiss so much just talking to him and sharing my thoughts with him. he gets so confused if its too many words. i am really struggling
@TrevorNaidoo sorry to hear you’re finding it so tough. It’s a massive change for you both & it will take time for things to settle.
Is your husband on any pain meds? If so it Sounds like they might need adjusting. If not I’d get his GP to sort something ASAP. Is it certain foods causing him pain after eating or is he getting reflux/indigestion? If he is there are meds for that. I was given lanzoprazole to take as stroke meds can irritate the stomach.
As an alternative to 999 you could try 111 for advice. Tell them you’re at the end of your tether & you don’t know what to do.
Is there anyone else that can help you? Don’t try & cope with it all yourself. I would so suggest getting an appointment with your GP to discuss the support they can give you as a carer.
It is so difficult but you will settle into a routine & work out whats best for you both. Try and find other ways to communicate if verbally isn’t working. Could he type on an ipad for example, write what he wants on paper?
Sending you lots of love & hugs.
Ann x
hi no cannot type as eye is also blurr and right hand paralysed little use of left hand can check phone for time only cannot write with left hand and also spells word but it does not spell a word , he gets his alphabets mixed up as well. yes i am with the carer group first session wednesday so worried to leave him but will have to I need a break.
I hope the carer session goes well. It’ll probably do you both good. When i first came home & hubby had to leave me on my own he made sure I had everything I might need right next to me so I didn’t have to move e.g. a drink, biscuits, sarnie, phone etc.
The first time you leave him will be hard but it will get easier. Xx
The first thing that sprang to mind is to do one or all of the following (apologies if you already know or have done them):
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Stroke Helpline - they can find your regional contact as they will spend time working out possible personal needs and signpost to sources of support. Otherwise the helpline is widely available for general help.
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GP - meds already mentioned. Also if not already done they should have referred your husband to the local MDT (Multi-Disciplinary Team) who are a range of Healthcare professionals in the community who work out a rehabilitation plan. It sounds like speech therapy / aids are needed to help him speak and for you both to communicate and understand his needs and wants if possible. I cannot promise quick results but if you have the means get some private sessions with SLT, Neuro physio and Neuro Psych.
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Stroke website may have support groups online (zoom) for you to link in to and get ideas and help for yourself too.
It will take time but I hope things improve.
thanks so much yes did everything got first carer meeting tomorrow and worried about leaving him. but just few hours.
hello Simon. This is very hard for me to say. he is not well and his body is failing him. his mind is strong and he knows what he wants. I could not get a home visit and 999 ambulance came home but he is refusing to go hospital. there may not keep him as its just pain . they gave him paracetamol tablets which he is refusing to take, this was last sat. . the GP visited home on Monday and so happy DR knew him . he was happy to see a familiar face . he asked Dr to please let him go as this is not who he is. his mind is broken and he cannot wee ,or poo or even eat and now can hardly see . his right side is paralysed but his shoulder and hip is very painful. We are now getting palliative support. as well. so their dr comes come and more nurse support. they also offering me some support. I am blessed friends and neighbours are being supportive and visiting and even making sure I eat , it breaks my heart but , I cannot bear to see him suffer so much . now he is asleep most of day. I am being super strong for my husband and got his favourite music and his friends are visiting him. thank you all been an amazing support as well
Hi Shani
Your words are hard to read too - I expect all here will be sad to read them.
It does sound serious. We will be ‘fingers firmly crossed’ for you both.
Focusing on the positives the increase in care and the support of family and friends must help(?) & you must take the help offered & I hope you’re husband can find some relief & perhaps recovery through sleep
Simon
@TrevorNaidoo i echo @SimonInEdinburgh thoughts. I’m very sad to read that your husband is now receiving palliative support.
I doubt there is much we can say to make it any easier for you so will just send you much love. I remember someone once saying to me where there’s life there’s hope. Hold on to that & don’t forget to look after yourself too.
Ann xx