feeling as if I have lost the man I married

My late father had a stroke which left him unable to speak (although he could sing!), and his personality changed completely. He was a lovely, mild-mannered man previously, but became aggressive and very difficult following the stroke. I even found him one day trying to hit my mother with his walking stick. He was so strong and it was really difficult to stop him hurting her. Sadly, this was all the result of the stroke, and I can only sympathise with you, Canarygirl.

Saggi, I did seriously consider leaving, despite the prospect of upsetting the kids and living in a womens' refuge. The one and only reason I didn't was because I still loved him and knew he was in there somewhere. I was nearly strangled too and 'reminded' that he could do whatever he liked - as the authorities wouldn't be able to prosecute or imprison a dying man.

23 years is such a long time, far worse than my ordeal. I think I would have left long ago.

I had a serious stroke 3 1/2 years (caused by clots in the brain) and 4 hours had pioneering surgery (a thrombectomy), made a complete physical recovery and was home within 24 hours but PTSD hit resulting in extreme anxiety and depression. I tried every thing and every avenue and at one point my brain was so full of constant negative thoughts I thought about taking all the sleeping tablets at once to make it stop. The thought of my family stopped me. I literally did try everything ... I think for post stroke trauma we need a place like cancer patients have in Maggie’s but as yet it doesn’t exist. I still have depression (My stroke was caused by atrial fibrillation so I now take a cocktail of meds each morning) You grieve for the old you. There’s pre stroke and post stroke you. My answer? (this has taken two years of trying/going places/classes etc) The NHS Health encyclopaedia and MIND (www.mind.org.uk) gives good advice re anxiety and depression.
For me it’s
1. Music - listening to positive uplifting songs (Foe me I put Lighthouse Family ‘Whatever Gets You Through the Day’ album.
2. Walking/Being outdoors in nature Some mornings I would wake with anxiety, pull on my leggings and coat over my nightshirt, and just walk. I have since joined the Ramblers but there are also ‘Walking for Health’ groups. Just google it. Being with others and listening to their life stories gives a different perspective.
3. Have you a dog? I have a boxer and he has got me through. If you don’t want the commitment the DogsTrust welcome dog foster caters - no cost and as and when you feel able. Some are traumatised so it may help your husband refocus his thinking and give a new direction.
4. Sewing. Or any ‘mindful’ activity that requires brain/eye/hand coordination requiring thought (so stops the negative thinking) but feels therapeutic and creative. I know we women knit/sew etc - not sure about men - although ive recently started a watercolour class and that is very mixed.
You know, this is for you his wife as well as your husband. I use the analogy of being on a plane when they say ‘Incase of oxygen give it yourself before others’ Self care is not selfish. You need to be as healthy in body AND mind as you can be when caring for someone or you end up drowning with them. So these suggestions are for you as well as him.
The MIND website gives support to carers as well as the person going through poor mental health.
I don’t want this to sound glib. I’m almost four years down the line and still sometimes have very dark days. (Initially I was scared to go to sleep as I thought it would happen again and I wouldn’t ever wake up)
Ironically people found me inspiring but seriously? at times you wouldn’t want to be inside my head as I’m having internal conversations with myself to overcome the negative thinking.
The secret is acknowledging those thoughts. Learning to sit with the anxiety rather than fight it. (I picture it as a tidal wave that immerses you but then eventually retracts and ebbs away (and it does).
When you recognise it, choose one of your activities to distract you.
Finally and possibly more importantly, you are not alone. People out there do love and care for you. Ask for support. People aren’t mind readers so won’t know your needs unless you ask. It makes others feel good to know they can help.
Hope this helps.

Speaking from experience, unfortunately I had a TIA just over 18 months ago and thankfully no disability etc. I was just more or less left to my own devices by the GP and now realise why.
Yes, I can be on a short fuse at times but it takes a good 12 months to get over it and I suppose as luck would have it I'm on my own with no-one to " shout at " should the need arise.
It can alter a person's personality but I'd say at this stage that patience is a virtue. I don't get as het up as I did and I think my cats have been my saving grace.
It's just a scary prospect that it could happen again and the annoyances that go with this sort of thing is that it happened at all ?? A " why me ?" moment.

Oh dear Saggi what a sad story and so many years when things could have been different. I hope you get support from your family and outside agencies, you have my sympathy, you are a very strong woman I think.
Canarygirl as you have seen from the responses here this is not uncommon after a stroke. That doesn't make it any easier for you though, make sure you have support from whatever source you can, don't feel guilty about doing things for yourself and having a break. Try to remember all the years you were happy together. Bon courage.

Wow, KarenBC, that's such a positive reply, based on personal experiences.

So sad for those dealing with this to you all. There but for the grace of God.

Research into strokes showed that 32% of patients described an inability to control aggression and was linked with the number of lesions on the brain from the stroke. The brain impacts on personality but he may not have the faintest idea he’s different. Have you asked him if he feels different and how he is. I deal with angry people all the time in my job. Sometimes it’s physiological sometimes hidden fears , depression, the ‘what is there to look forward to - nothing’ issue. He may fear change, loss of pride ,power and so throws his weight around! You can ( when he’s feeling ok) support this by asking questions - what shall I do about x,y, z. Let him feel he is in charge ( even if we are) So he doesn’t have to make a big deal of it. Secondly make sure you are safe. You can’t argue discuss reason with aggression, better scarper out the door. Always look after yourself , do what you love and part of that is crying, grieving for the loss we face in life, all of us , be it our beloveds, our youth, children, or even that it’s not been what we hoped for, you name it. I personally pray and ask God ( well he ought to know what the problem is !) for help when faced with pain and funny things happen. Years ago when in a deteriorating marriage a dog showed up who I loved far more than my HH ( horrible husband ) at the time. When my daughter emigrated a motherless girl showed up bringing me huge comfort. Prayers work. But in funny ways. Your husband is a wake up call to love yourself.
Hope I don’t sound preachy I really don’t mean to I learn so much from all you gorgeous ladies - should be called wisdom net)

This thread is Gransnet at its finest. Brave ladies coping themselves and reaching out to help others. Wish there was a 'hats off to you all' emoji.

So much good and helpful advice here, wish I had had access to it 7 years ago. DH had a bad stroke then, at 67, taking his left side, but has worked hard at physio and made slight recovery. However, it’s tbe damage to the brain, the Executive Level of thinking, and Confabulation which makes life so stressful. He’s over confident, outspoken, exaggerates, and the false memory recall when relating past incidents or conversations can just be so embarrassing when in company. At home I can live with it mostly but cringe when out socially. No amount of physio or medication can help and I pray it never gets any worse. Thanks for listening.

Interesting reading this my dh has arthritis in the neck and knees, this has got worse over the last few years he also has a pacemaker. He’s personality has changed to a point but it’s noticeable only when he has a flare up which is quite common with arthritis I don’t think men cope as well as a woman with illness that’s my opinion
I fell over in our local shopping centre and broke my hip I
Was in hospital for 5 days staff were amazing i now have a metal hip, I was determined when I came home not to rely on crutches or a stick so although I was in a lot of pain I coped and did my exercise as advised by the hospital. I do get some pain still and numbness at times but I carry on.

Canarygirl1

I am so terribly sorry to hear your very sad news. You are by no means being selfish and you most certainly deserve help and support.
Is there anybody from the Health Services looking after your DH? Would it be possible to ask to see a Neuropsychologist? Even one visit for you to have some counselling about his condition might help you understand what has happened.
I am a retired Neuropsychologist. It would be wrong for me to assume anything from your letter. I can only say that you need to find out more about where the stroke has damaged his brain and gain a better understanding of the changes that he has undergone.
If the damage is to the right side of the brain, for example, a person may become unemotional and unresponsive, seeming apathetic and unable to feel the normal emotions they previously felt.
The two sides of our brain, the hemispheres ((half-rounds) carry parts that serve different functions. They communicate with each other very rapidly so our brain works as a whole. But this is why people with a left sided stroke are more prone, but not always, to having speech problems because in most of us the parts that operate for speech are in the left side.

Your poor dear Husband has changed. I am so terribly sorry to say this. I really want you to get professional help to support you through this. We are never ready for such a terrible strike of lightning as this. Nobody can imagine how the loving person we knew can so suddenly be taken away by such a drastic brain event, and somebody replaces them who has become so terribly difficult and causes so much distress.

There are self-help support groups too, for carers and Charities for Stroke survivors and their carers. You would almost certainly gain a lot of help from these. I do not know what is available where you live but as well as looking on the internet, ask at your hospital and your own Doctor.

Try to remember it is the brain damage that has altered your DH's ability to be himself. When he is angry I expect the horrible way his life has been drastically changed is affecting him as well as the changes in his brain that make it so hard for him to regulate his temper. It is not him.

I always think that the disorders of the brain are by far the hardest for us to cope with. Just as you are having to do, the loving wife (I'll say wife because that is your case here) loses the person she loved and married, but still has this other person there. It is like a torture. How can we make sense of it? It is as bad in dementure. The real person goes away. It is not at all surprising that the spouse that is left says "I have lost my husband/wife".

I am a Christian, and this type of illness is the hardest to understand and take before God. But if our heart, our kidneys, liver or any other part of us can suffer damage, why not our brain? And what does our brain do? Well, it does so much just about everything! That's the trouble when it gets ill.

Mainly it is our communicating device. Receiving and interpreting signals and sending out our own messages. A bit like a radio. Then when it is damaged the reception is scrambled the messages go out scrambled, nothing makes sense, the person somewhere in there isn't able to communicate as themselves and their body is taken over by a communication centre that does not work understand what it receives and cannot send out anything understandable.

Please do as I suggest, today or early as you can tomorrow, and start finding help and support. Do not try to look after your poor dear Husband alone. I have in a very cowardly way, been putting off saying that you are, in fact, in mourning for that lovely man that this stroke has taken away. You have every right to be so. To go through every stage of mourning, including the anger at the terrible injustice of this happening to your wonderful man. Let yourself feel these very sad emotions because they are natural and real. They are not selfish at all.

In time you will be able to care for your DH, damaged though his brain has so unjustly been, because you know he never wanted this, and you will do it remembering all those years when he was able to communicate his true self to you. When he was able to show how he loves you and wants the best for you.

I have put one link below from the UK, but there are many others. I would like you to talk to your Doctor and the Hospital Doctor who saw your Husband. I would like them to give him counselling. It does help. Also I do hope people can talk to you and help you understand exactly what has happened to your DH. I find that if people understand they are so much more able to cope.

www.stroke.org.uk/sites/default/files/Emotional%20changes%20after%20stroke.pdf

I send you all my love, and pray that the days grow brighter. God bless you both, love from Elle ???

So sorry I did not put in commas where they are needed. I do hope it is understandable, none the less.

I'm so sorry to hear that*GinJeannie*. If only we as the general public were better educated to understand that there are people who have had all sorts of illnesses or conditions that make them different, and thus we can adjust our expectations and attitudes into realising we aren't all the same. ??

Canary Girl I am in the same position as you DH had a stroke 18 months ago.
Loss of speech, which has improved but previously he was a great raconteur and now struggles in social situations even among friends and family.
Loss of strength so cannot play golf even with a buggy and the game was his life 3 to 4 times a week.
Loss of sense of humour rather a querulous chap some of the time.
The most difficult part to me is dealing with the sudden bouts of overwhelming tiredeness that strike at random.
Yesterday he had to go back to bed to sleep both morning and afternoon. Today he drove 15 mins in the car, came for a 25 min walk, weeded the patio and intends to mow the lawn when has had pm snooze.
Yes he is a different person I have had to learn to accept that.
I wish you lots of luck and patience.

Jane10. And a "How I agree with this Poster" emoji!! ?

FC61. Hugs! I'm so glad you are posting on here! ?

canarygirl1 I am so sorry that you have having such a difficult experience. It struck a chord with me, even though DH has not had a stroke, nor is he aggressive. Nevertheless I have most definitely lost the man I married. He has motor neurone disease, and since his diagnosis 2 months ago, his speech has deteriorated rapidly, his balance is bad and his legs are becoming weak. I totally understand that as a man who has always been physically strong and active, he wants to do as much as he can for as long as he can. But he has become totally irresponsible. He rushes everywhere, tries to do things he is physically incapable of, and has had 3 bad falls. In addition he has something called emotional lability, which means he laughs at things that aren’t funny. So I can’t have a sensible conversation with him about being more careful, as he just laughs. Also he has become very stubborn. He won’t take the advice of his physio and OT, or accept the equipment they have suggested. All too soon his physical condition will make him very disabled, so I don’t want him to stop doing as much as he can. But I’m so stressed. I know I’m trying too hard to protect him, so I go out to the shops every day to fetch the paper and to give us both a break! But I’m always fearful that when I get back he will have hurt himself seriously. I know inside he is still the same caring, loving husband he has always been, and this is his way of coping with an incredibly difficult situation, but it is so very hard.

Oh Saggi, I hope you find the strength to carry on. You have been amazing to cope for so long.

Canarygirl1, I agree with Tillybelle's detailed advice about seeking help - except for just one small phrase that really grated on me (sorry):

'In time you will be able to care for your DH'

It seems too definite, too certain and compulsory, as if it's your duty and what you must or should do. I'd just like to add that you always have a choice. Every day you can decide to continue - or not. As one who truly knows how difficult it is, I'd say it should never be expected of anyone to sacrifice their own life, health and wellbeing to care for another. Sometimes the help just isn't there while you appear to be coping.

Some heart wrenching stories here..thank goodness for the support and love... no one should feel guilty for finding your self in a horrid situation like these.. ?all round

BradfordLass I also lost my husband to paranoid schizophrenia.

He was diagnosed 3 years into our marriage and the following week I was confirmed pregnant. I stayed with him for what was 22 years of misery where I was deemed to blame for everything. After a few years, My dr, who was also his dr, suggested I leave him, for my own health. His social worker suggested the same. They assured me he would be cared for. It took another few years because I felt guilty but eventually we parted as I could no longer cope and was on the verge of a breakdown myself. The funny and kind man I met and married disappeared about 4 years after we married and rarely appeared again. His paranoia was directed at me and our son. I did my best and my biggest regret is that I did not leave sooner and possibly give my son a happier and more stable childhood. My husband was never going to be well and was always going to end up permanently hospitalised. Being with me was what kept him out of hospital as long as he was.

I can only express what happened to me. My mother died and i went for some bereavement counselling. My husband was diagnosed with dementia and my counsellor kindly gave me counselling about losing the husband of 49 years. It was truely amazing how i felt. He had several strokes before he passed away 6 years later and was just nothing like the man i had married but the earlier counselling had dealt with him. The lovely man i grieved for before he died. When he died people thought i was strong but i was accepting that this shell of a man was not my husband. He had left six years before and i had grieved then. He didnt know who the family were at the end it was heartbreaking for the children.

I can't advise anymore than what as been said just wanted to say what strong ladies there are on gransnet sending you all ??

Hetty58. Thanks Hetty. It's really important that people like you, who see something and, especially if you feel upset by it, write and say so immediately. Thank you too for not turning on me and deciding I am horrible for saying it!

Of course, the very last thing I would ever do deliberately would be to say something that upset anyone who was seeking help. I am truly grateful that you pointed this out and agree with you! Nobody should ever feel that they have a path destined before them and no other possibility but to go that way!

I'm sorry I said that in my 1st post, I was struggling to find a way of saying I hoped that the right help would improve her husband's moods and that she would feel more able to cope. Sometimes I don't express what I want to say in the best way and I am most grateful for friendly and kind people like you, Hetty, who help me out!

And yes - I agree with what Hetty58 said it should never be expected of anyone to sacrifice their own life health and wellbeing to care for another.

Thank you again!

Oh Witchypoo BradfordLass72 and Coolgran65,
What can I say? I am so very sorry. My heart really does ache for you.

My experience was different but not different if that isn't too stupid a way to put it. The man I married quickly became the cruel person I could not understand and gave me the most unhappy time for 22 years until, I having been granted a Legal Separation, he committed suicide.

I do think however, that the suffering of the wives of husbands with strokes or dementia who turn angry and violent, and who ignore their wives even when their wife herself is seriously ill, is one of the most miserable, painful and unbearable experiences in the world. I wish so much that I could find a means to change this! (Don't we all?)

I send my love to you all. To all who are feeling trapped with a husband (or wife - for I do know we have grandads here) with a brain disorder and are going through a remorseless hell - please spare yourselves! Don't do it until you are becoming ill or if are being abused! Please get help. Saggi I say it again - you do not have to stay with someone who abuses you even if they had a stroke!
???
please note my reply to Hetty58 as I said something 1st time that I regret that sounded as if I expect people to stay in a terrible situation. I certainly don't. Thankfully Hetty pointed this out to me!