Hello - I'm new to this site but would really appreciate any help/advice. My dad suffered a severe stoke at the end of July and was in hospital for 4 months. He has lost the use of his left arm and leg so is bed bound at home - he's been home for 6 weeks now and has carers coming in 4 times a day. He has always suffered from back and hip pain due to arthritis but this has got much worse since he's had the stroke and has nerve pain too. Most nights he is in pain and cant sleep - so he ends up waking my mum screaming and shouting in pain - she's literally had hardly any sleep in the 6 weeks that he's been home. His GP has changed his medication quite a few times in 6 weeks and I understand it's a bit of trial and error - but recently he had a bad reaction to the medication and became very aggressive/angry/nasty and it was all vented at my mum. He's been a bit better the last few days but is still very angry towards my mum at times, he screams and shouts at her if she doesn't do things quick enough for him, or tries to help him etc. He doesn't do it to anyone else - only her. He's so frustrated as he wants to walk and get around but said he feels like a caged animal in the bed, its heartbreaking. He is having physio but not very often (that's another story) - I totally understand his frustration but it doesn't make things easier. We understand that there have been massive changes to his brain too so expected this behaviour to some extent, but it's so hard on my mum, she's really struggling at the moment. Has anyone been through anything similar? Any tips on how to help him recover and also how my mum can deal with his anger outbursts etc? I'm worried this is going to take it's toll on my mum and worry about her physical and mental health.....on top of worrying about my dad.
So sorry to hear about the stroke your dad has had but also for the pressure your mum is under caring for dad. Most of us on this site are not medically trained but our personal experiences may help. I wonder if his doctor has prescribed a drug called Amitriptyline for him. This helps with pain but is also an antidepressant so it may help him settle a bit. He sounds as if he is frustrated and thinking he should be getting better quicker than he is, but recovery from stroke is very very slow and needs lots of patience. Maybe his carers could have a word with his doctor and let him know the pressure your mum is under at the moment, she may be able to have some respite care because if she becomes ill she will not be able to look after him. Unfortunately we have to add Covid into all this so I'm not sure how easy it will be to get respite care but it is something you as a family should think about as a short term measure - it sounds as if mum is finding it really hard to cope at the moment and desperately needs some help. I really feel for them both.
Will be thinking of you all.
Ann
Jess, so sorry to hear about your dad. Your mum is in a terrible position. Please remember stroke affects the emotions as well as having physical effects. Dad,like most of us, will be remembering what he used to be like and isn't any longer. When I first came home I could be quite horrible to my partner and can still come out with an unkind statement. Dad, like most of us, has to 'accept' his stroke and its limitations. Try to get mum to see that his anger is not about her but about himself.
Post stroke support varies from health trust to health trust. I was lucky and got a lot of physio before and after leaving hospital. The pandemic has made such support much worse. Post stroke recovery takes a long time and five years on I am still working on improving further. Try to encourage him to move his arms, hand and leg, even if just a little. Also, try to encourage him to do things that relax him....playing soothing music might help. The athritis of course will make him feel worse.
also, mum needs a break. Is there a Carers group she could join so that she has support from others in a similar position. The Stroke Association helpline is also a good outlet for you to seek further advice. Take care.
Strokes disrupt so many lives when they happen. I became a carer for my husband after he suffered a stroke. Recently I had a TIA so am now a carer and a stroke survivor. It is the frustration that causes the anger and your mother is the one he is taking his anger out on. It is rather like dealing with the temper tantrums of a toddler. I do feel for your mother as there is not a great deal of help for carers. We had 6 weeks of excellent support from the area stroke team and then nothing. My daughter has been marvellous and does try to arrange days out for me to get a break from caring. I continue to feel guilty, even after 6 years of caring, when I complain about my husbands behaviour, his anger outbursts. I have learnt to walk away, it is difficult to argue with a stroke survivor, they do not seem able to see others perspectives. My husband seems to take guidance from our children with less controversy than from me. It is hard for me not to feel downtrodden and a low priority in life's pecking order. As A carer at the moment, I feel I am fighting the NHS, to get medical attention for myself, fighting self pity, trying to avoid the corona virus. Indeed like everyone else fighting to survive, to live. I suppose you could argue the whole family is a stroke survivor.
things have improved with time and patience. My advice is to try to give your mother regular breaks from caring and to watch her health. I could not have survived without the support of my children and grandchildren. Marylin
Dear Jess
so sorry to hear that Dad has suffered such a bad stroke.
Only another SS understands what Dad is going through. I just hope that you might help him by trying to guess just what he is going through. Perhaps you could help him by taking his view point on board and especially by explaining to third parties, what he is going through.
It is very hard on SS when others spread inaccurate news that relates to us. To find that friends and relatives only know the trauma from (your mums?) point of view.
perhaps you could make an especial effort to determine what Dad would like from you and to see just how you can fulfill one or two of his needs. Not easy unless you have a stroke yourself, and that is the last thing i would want for you.
I have had immense pleasure from my cat. He sits in the sun on the window ledge, he keeps me company. He cuddles up to me from time to time. Very therapeutic, i just love to see him trot in to see me. I think he understands what a SS goes through better than many humans.
best wishes
colin
thanks for your reply Colin. We have tried to ask dad what we can do to help - we listen to his frustrations, have arranged a private physio etc. He just seems tp be venting all of his anger at my mum. Its just such a difficult situation, it's heartbreaking to see him this way but also heartbreaking to see my mum struggling and almost at breaking point. xx
thank you so much for your reply Marylin. I completely understand where you are coming from - it's hard trying to fight for help. There doesn't seem to be an awful lot of help avavilable for carers. We completley understand that he will have anger outburts ect but these are always directed at my mum - he is great with me and my brother. He has threatened to punch my mum and last night he grabbed her and wouldn't let go when she leant over his bed. My mum is at breaking point. xx
thanks for your reply John. I completely understand what you are saying and canot imagine how hard it must be for my dad to be in the position that he is in. He does regular exercises with his arms and legs as he is desperate to be able to walk again. The problem is that he's started becoming really abusive towards my mum now - he's theatened to punch her and last night grabbed her and wouldn;t let go while she was leaning over his bed to pass him something. My dad has never been a violent man, it's clearly the stroke that has caused this but my poor mum is at breaking point x
Thank you for you're reply Ann. Funnily enough the doctor prescribed him Amitriptyline about a month ago but while it seemed to work for pain relief, he had some really bad side effects from - hiis personality changed almost overnight - he had panic attacks, he felt suicidal, he was very confused to the point where he didn't know that he was in his own home. The doctor has now reduced the Amitriptyline and he is better in himself but the pain is horrendous. His anger towards my mum is getting worse though - he heas threatend to punch her and last night he grapped her and wouldn't let go as she was leaning over his bed. She was really shaken up. He was trying to throw his cup at her too. She really is at breaking point - I think she absolutley needs some respipte short term until the doctor can get his pain and anger under control x
Maybe it's time for you to step in and speak to the doctor, tell him of your fears for your mum if dad doesn't get some help soon. I really think respite care will help your mum, she must be quite frightened by his outbursts, and they should be able to get dads pain under control and help with his anger as well. The stroke has had a terrible effect on dad but your mum must be protected from these outbursts which I'm sure are so unlike him. It must be heartbreaking for your mum - stroke can affect people in so many ways depending on which part of the brain has been damaged and this is what you are seeing in your dad. I hope you manage to get some help soon.
Thinking of you all.
Ann
Hi Jess, you have received excellent replies from very experienced people on this site. I just want to say how sorry I am for what you are all experiencing. Pipgran is spot on when she says "we are all stroke survivors", because of the effects that this awful condition has on the family. Survival is a daily struggle ☹️.
In the early weeks/months following my husband's stroke, I watched his personality change, even his voice sounded different. If I believed in conspiracy theories, I'd have probably thought he'd been abducted and a doppelganger put in his place ?. In 34 years of marriage we'd hardly ever argued or caused sadness to each other, however, after the stroke we both cried and found ourselves in confrontation almost on a daily basis - it was heart wrenching and very frightening. He would sometimes shout at me, which he'd never done, and used some extremely choice swear words, again, completely out of character. I would find him sitting hunched up, rocking back and forth in pain and distress, he threatened to take his life on more than one occasion.
I don't really like recalling or recording this information, but I'm sharing so that you know that these stressful manifestations are sadly not uncommon post-stroke. As Pipgran mentioned, I would sometimes just excuse myself from the room if I felt a 'situation' approaching. I felt very guilty leaving him to the torments he was experiencing, but I felt self-preservation was important if we were to survive long-term. He was offered specialist stroke counselling; I was in favour of this, but could never quite persuade him to sign up.
No-one can say how long it will take your Dad to come to terms with his new self, it's a massive issue to deal with. Brenda has used the analogy of the contents of a filing cabinet being turned upside down and thrown all over the place - somehow, the survivor has to re-organise their whole brain (filing cabinet), which has taken years to organise in the first place.
Your Dad desperately needs relief from the pain he is experiencing, so it's very important that the stroke team deal with this asap. He also needs as much rest/sleep as he can manage, to allow his injured brain to find new ways of operating. Your Mum needs a break, somewhere she can confidently rest and re-group, knowing that Dad is being looked after. Life will gradually settle down, but the ducks have to be in a row for this to begin to happen.
My apologies for my long-winded post. Dad is very fortunate to have people to love and care for him, and you can also be there for each other, sharing the care. I hope you can all stay strong together, and please visit this site for back-up and support. I found it an absolute god-send to have the voices of experience, offering their advice, I couldn't have managed without it.
Take good care, and very wishes, xx
Desr Jess
very hard situation for you.
my local stroke group has a section for carers only. Of course covid is in the way. But that group is excellent. They even go on holiday together, so i understand.
i had a stroke five years ago. In the data for that year (2014)it suggested that 65% of couples split.
Us SS change. We are not who we were.
from day one i insisted my other half went out. She loves shopping, coffee mornings, bazaars and chatting to neighbours, so it was easy to get her out the house for an hour each day. She also had four day away trips to friends and family.
Being wise after the event, Dad perhaps should not have gone home. Or Mum should not have stayed home.
so what can you do ?
get dad in to a home.
try not to side with mum.
i regret to suggest that the anger takes a long time to ease let alone go way.
lets hope 2021 brings some happiness in to your family.
colin
Jess, I think you need to talk to his doctors about that as it is a worrying change of behaviour.
Jess, I am a stroke survivor. Two things struck me upon reading your post. #1 The doctor needs to find some help for your dad's pain. #2 Your dad needs to feel like he has hope and can improve physically. I was totally paralyzed on my left side. I had physical and occupational therapy 3 times a day for 3 weeks and then when I could come home I had phys. and occ. therapy 2 to 3 times a week for 4 months. I continued exercises at home after that. I don't know why your dad is not having physical therapy, but he needs it to improve movement. When he can begin to do things again, he'll be in better spirits and maybe go easier on your mom. Don't lose hope. Things can get better. You'll all be in my prayers tonight. Love, Jeanne
Hi Jess
Do you have a stroke team in your area? You need to contact them and let them know what is going on. Your mother should not have to put up with physical and mental abuse. Also inform your GP if you can get hold of them. It seems stroke victims turn on the one closest to them. My son and daughter have no trouble managing my husband. I am the one he shouts at and blames for every thing.
i did employ a recommended carer privately after my TIA as my left hand was not working and I needed help for a couple of weeks until the use of my hand returned and have kept her on as a cleaner for a couple of hours a week as she suits us both and we may need more care in the future. Perhaps you could find some help, don't forget to apply for attendance and carers allowances. They are not:means tested. My sympathies are with you and your family you are all under tremendous stress. Marylin
Hi Jess, you are doing the right things and have heard some good replies and comments from the great people who contribute on this site. I can only repeat what they have said, from my experience as a stroke sufferer of 5 years. Dad is 6 months into his recovery, this is still early days in the process. His treatment and recovery will also have been impacted by the COVID situation where there may have been pressure to get him home as quickly as possible. Ring the Stroke Association and ask for help and guidance about what to do. Read the leaflet on this site entitled Stroke Recovery. Ask the hospital/social worker allocated to Dad about access to a clinical psychologist for dad (did he have one?). Most people who have experienced a major brain injury suffer some mental health issues,these are normal reactions to a major event. With help these unhelpful thoughts,behaviour (anger) can be managed. Dad can be helped to get back on track and overcome these unhelpful responses which are dominating Dad at the moment. His response is normal but a third party will be better placed to help him overcome some of these problems. It’s a difficult time for everyone but things can be improved. Just by doing some small practical things such as reading a leaflet and gaining a bit more knowledge to take the next few steps, you will hopefully feel you are helping Dad and mum. Best wishes Pat
Thanks for youre reply Pat. Dad hasn't got a psychologist - but he has been referred for counselling. I'm not sure how long it will take though. You're right - everything has been affected by covid. Its so frustrating. Hoping that things will get easier with some help. Really appreciate your reply. Jess
Thanks for your reply Jeanne. I completley agree - I think if Dads pain can be managed and he can sleep through the nights, then that will make life much easier. When dad was in hospital, he had 1 hour of physio every day Monday - Friday. Since he has been home (16th November), the Occupational Therapist and Physio have been out a handful of times. We are looking into arranging some private physio for him. I think he is so frustrated at the moment and he feels like physios etyc have all given up on him. This can't be helping his mood. It's just so hard on my mum xx
Thank you so much for your reply. You're absolutely right - we are all affected by the Stroke, not just my dad. Unfortunately he doesnt realise this though and cannot understand when we tell him that my mum isn't coping very well. His attitude is "what about me?". Its sounds like your situation was very similar to my mums. It's awful but I agree, its about self preservation and I cannot stand to see that impact this is having on my mum. My dad has agree dto speak to a counsellor so hopefully that will be sorted soon. In the last few days dad has been very agressive with mum, he grabbed her when she was seeing to him during the night. Ling story short - the police were called as she was so frightened. She's now very wary about being on her own with him. We are trying to get him to agree to go into repspite for 2 weeks to give her a break but he's very reluctant. If he doesn't agree to it, we can't make him go. I just hope that things calm down soon as his behaviour if having such an impact on us all and I know it's not his fault xx
thanks Colin. We are trying to get dad to agree to go in to respite for 2 weeks to give mum a break but he is very reluctant at the moment. If he doesn't agree to it, there's nothing that we can do. He doesn't like being left alone so my mum literally cannot go anywhere at the moment - I worry for her sanity. We've been advised by a number of professionals that it seems like dad had an unsafe discharge from hospital - my mum still hasn't had a carers assessment 7 weeks on. I just hope we can find a way to get his anger under control. Thanks again for your reply x