Stroke survivor suffering anger, mood swings, frustration, tears, and other ‘out of character’ personality changes.... do these ever subside?and the original character return?
I would really appreciate feedback & any advice from you lovely headway folks.
My dear auntie suffered a stroke 3 months ago, which has not only caused loss of physical capability, but also her emotional capacity has been affected.
She has become very frustrated, angry, tearful, impatient, and also now suffers mood swings and mental fatigue as the day does on. Her diplomacy filter appears to have disappeared too and is outspoken.
Due to her behavior it is very difficult for her to make friends in her new environment in a residential care home.
She has been an amazing god mother to me, and prior to the stroke , demonstrated her immense wisdom, sensitivity to people /and their circumstances, generosity, and encouragement. It’s so very very sad to see her in such a difficult emotional place. I just want to help , but am struggling to see how this situation can be turned around?
Does anyone know if drugs can temporarily be prescribed?
Would they help her transition in her new environment, in her new ‘ post-stroke ‘ state?
I would be so grateful for all your help and wisdom.
😢
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Smilerdi
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All I can say that 3 months is very early days. It's been a rollercoaster and it's still difficult. Counselling is a good idea. The highs and lows are not as extreme. There are definitely bad days but the light is becoming to filter through.
I imagine that much of your aunt's behaviour might be down to confusion & frustration in dealing with her new-found limitations.
It can be frightening and disorientating suddenly facing physiological and emotional loss of control, apart from the raft of other symptoms. Your aunt will be struggling to accept these limitation. After a lifetime of functioning efficiently and, I'm sure, holding her own in discussions/conversation, she might struggle with word recall and easily lose her chain of thought mid-sentence.
It took over 12 months for me to accept my new limitations. I'd previously been quick witted, revelling in difficult debates and always ready with a humorous remark, so I became depressed when my word recall became so poor that I withdrew from friends & anyone where conversation was likely. And certain physical limitations/discomforts have been challenging.
It's a tough call, but acceptance of these impediments is the only route to peace. I still get angry at myself when words fail me, but I've learned to keep humour at the ready ; self-ridicule is preferable to self-loathing.
Your aunt will develop coping strategies (as Spider says, 3 months is very early days) and, with rehab and much more time, I hope she'll start to adapt and start finding ways through and around the obstacles her stroke has unfortunately created.
Best wishes for better days ahead............. Cat x
As spider555 and cat3 have pointed out, 3 months might look like a long time 'on paper', but, in terms of brain recovery, it really is 'early days.' The brain is an incredibly complex structure, your aunt's brain will still be re-settling after whatever damage was caused by the stroke. Nobody would expect a person to compete in the Olympics, or run a marathon 3 months after a car-crash, but, because brain injuries are generally invisible, we survivors are often assumed to be 'better' while we're still healing.
The 'invisibility' element is incredibly frustrating for us, it's really hard to articulate to un-injured people what it's like to effectively have a 'phantom limb itch' when nothing has been amputated. We generally look pretty much the same as we did 'before', and we're constantly aware that we're not 'the same' as we were. There is an element of unintentional pressure from well-meaning individuals who tell us how 'lucky' we were to have survived, because some people don't, I know that, for me, that really exacerbated my guilt/denial phase. I ran about like a headless chicken, trying to 'prove' to everybody that I was capable of doing everything I did 'before'. I wasn't.
Nobody can predict how much of your aunt's previous character will return, but I imagine that the majority of us either carrying, or caring for someone with brain injuries will recognise the stage you're describing. It is a stage, and, with support, she'll come through it, as she learns to compensate for the deficits the stroke has caused. There isn't a 'quick fix', or a one-size-fits-all solution, we all heal differently, based on the location and extent of the injuries, the support we access, and our previous functionality/experiences. I understand how traumatic it must be for you to see your aunt in this state, I know I worried some people, and scared others, I was an absolute monster to begin with. I spent months in the angry/confused limbo-state, wondering why I wasn't 'better', but my support networks were non-existent, and I recognise that what I thought was resilience was actually resistance.
That resistance is hard to work through, I've always been obstinate and independent, couple that with brain injuries, and I can see where I personally went 'wrong.' Your aunt will gradually learn work-around strategies, but, as with learning anything, that will take time. We survivors are at a slight disadvantage in that respect, trying to embed 'new' behaviours and mechanisms into healing brains isn't quite as straightforward as teaching a child to tie shoelaces.
The frustration/irritability/anger, whilst distressing, and out-of-character for your aunt are completely 'normal' for the majority of brain injury survivors. I described mine as that HUGE wave of inarticulate anger you'd experience if you walked across a room in the dark, and barked your shin on the coffee-table. In that instant of blinding pain, while you're inventing swear-words, and unlikely-to-catch-on dance moves, NOTHING is processed rationally, you'd happily kick the coffee-table around the room at that point, hang the fact that you'd then have a sore shin AND a sore foot. It doesn't matter that the coffee-table has always been there, and you're the buffoon who walked into it, and you'd happily make 'alternative storage suggestions' to people offering you bags of frozen peas, because there's so much pain, and you're so very angry. I think my 'coffee table' stage probably lasted about six months, and it does re-surface occasionally, I've just learned how to deflect it.
The mood-swings are also to be expected, as Cat has pointed out, 'we' can experience absolute crushing apathy about what we 'were' before at random intervals, that doesn't really go away, in my experience, it's just a case of learning to deflect it. I 'was' a well-respected professional, and now I'm unemployed, waiting for a date for my PIP tribunal. (Horrible system, it makes us repeatedly reflect on what we can't-do-any-more.)
The fatigue is also fairly standard, pretty much everything is more difficult after brain injuries, and the adaptations we develop, to keep ourselves, and others safe drain our metaphorical batteries, both physically and cognitively. Personally, I'm still experiencing fatigue every evening, I'm pretty much useless after about 5pm, we're all different. It's difficult to explain that cognitive fatigue is not the same as being 'tired', it's more like the 10th consecutive night of no sleep with a new baby, everything is warped-weird, and my brain decides it doesn't want to 'brain' any more, and fancies a nap. I've tried to explain to people that, with all of my work-around mechanisms, and adaptations, my brain has effectively done a full day's work by lunch-time, and that I'm not just being 'lazy' or 'unsociable.' (Hell, I wasn't sociable before, now, with the sensory overload factor, I'm virtually a hermit.)
We don't mean to be difficult, argumentative, aggressive, or offensive. It's not deliberate, in most cases it's not a conscious choice. There isn't a 'magic pill' that will immediately restore your aunt to 'before' settings, I know some people on the forum have found a balance with anti-depressant medication, that's a discussion between your aunt and her medical teams, it does work for some people, unfortunately I'm not one of them. You will see parts of her returning to you, but it's a long road, and there probably will be 'relapse' type issues, brain injuries have a fluctuating element to them, which compounds some of the frustration, when you "can't" do something that you "could" do yesterday, last week, or five minutes ago.
Thank you, Janet, I'd tried not to be assumptive, and fall into the trap of asserting that my experience was the same as everyone else's, but I did recognise elements of myself in the original post. For me, it hasn't 'gone away', I've just managed to re-train myself to cope with it more productively than having to leave the room every time someone slurped their tea. (Saying that, I'm currently battling a tantrum about next door's bin, which happens without fail every second Friday.)
It's funny you said that about slurping tea, I get really hung up on my father in law belching! He does it all the time, I even mentioned it to my counsellor when I was seeing her. I'm sure he doesn't realise he's doing it but he has Alzheimer's so of course it's ignored by all, the first time I saw him after about a month break it was the first thing I noticed!!!!!!
A million and one work-around strategies, to avoid disproportionate reactions to things that don't 'bother' other people... the sensory overload of situations that other people deem 'normal' is massive. I'm a nightmare for smells, and noises, and 'strange' light, if I could have chosen a super-power it wouldn't have been the ability to hear lightbulbs, that's a rubbish one. All of the weird work-arounds eventually become normalised, absorbed, but they do take additional energy, whether that's physical, or cognitive. Someone recently suggested I should be tested for autism, due to all my 'odd' aversions, repetitions and such, I can see what they mean, but I don't think an ASC diagnosis would be right, this is me adapting to having a brain that no longer functions as it used to.
Again very intuitive. It was my BI and the way I was learning to live with it made me realise this was what my son was dealing with.
I've known since he could communicate with us that he was"different" but he always hit his milestones and had friends, although not many. Anyway I had him assessed at the age of 20, it all came to a head while he was away at uni, and he is on the autistic spectrum, very high functioning, he has his degree now, but he's having real trouble getting a job.
Sorry to hear of your son's struggle to find employment, the absolute irony of high-functioning ASC is that there ARE massive skills and functionality there to be tapped into, but the one-size-fits-all nature of job application processes are not suited to the triad impairments of people with ASC.
Brain injured, or AS, we're trying to work through these 'universal' systems and processes. The systems seem to be trying to bang a hamster through the star-shaped hole on the Fisher Price shape-sorter, and hope it still runs. (If it doesn't, the PIP-assessor will give the ball a kick, and record that as 'able to move 20m.')
It's in my notes as 'extreme and disproportionate anger', and the bin does it every time. They park their bin inconsiderately on the drive, which 'blocks in' the neighbour on the other side. They ALWAYS over-fill their bin, because they put things in general waste that should go in recycling. Their bin-lid never closes, so they usually try to chuck their over-spill in my bin... wouldn't have been so bad if they didn't have TWO bins until about a month ago, and still alternated between lobbing their rubbish in my bin, and actually stealing my emptied bin, when they'd put builder's waste in theirs, meaning the bin-men wouldn't take it.
I painted my door number (badly) on 'my' bin in the end. They retaliated by painting their door-number on their TWO bins. Hello? I'm the one with a damaged brain, the bin-men had already told them they were only allowed one bin. The bin-men removed one of their bins, and now it's a constant Meerkat-type twitching to make sure I claim my bin back, before they take it again, or lob their un-collected overspill into it.
*Breathe.*
It probably shouldn't annoy me, but it really, REALLY does. I'm right, they're wrong, and I'm part-woman, part-bin-Meerkat.
you say "neurological tics" . Do you mean like someone with "Tourette's".
as we struggle to rebuild ourselves, we are doing all the hard work of learning everything again and adapting our new selves to the same environment. the hamster in the star.
The hard work takes its toll.
fatigue is the least of our worries.
after only a year I'm still adapting all the time trying not have habits or say I can't.
I guess it's more about little signs that I've had a brain injury. Some days I have electric teeth 😮 or burning pains. I pretty much know it's not another stroke it's just the legacy. Hoping it will dampen more.
Hallo I'm very new at this too, only 2 months in for me, with relatively minor but still life changing effects - it's been horrendous and frightening and lonely and my medical care has been shabby, in my opinion. I have some insight into what your auntie must be going and it'll be a long road back without doubt. Because of my situation I went to the interweb and found groups like this, that have been an emotional and mental life saver. In passing I've found many on line docs and videos that have helped to shine a light into my darkness. Just type in 'emotionalism after a stroke', lots comes up.
On YT, The TBI Coach, Nathalie Kelly, is one of my favourites, she's fought back and is still fighting and is another inspiration to all of us.
In desperation I self referred to the Stroke Association (in UK) and was contacted within days by their county representative, a lovely nurse, whose help, advice and advocacy has been invaluable. I can't praise them enough. I've just enrolled on their My Stroke Guide online programme so I've 'nicked' this from their site.
I hope you find it useful and that it helps you understand what is happening to your dear auntie. It even refers to medication that might help her. And never underestimate your own love, influence and support. She has you on her side and that will be invaluable in the days ahead. Best of love and luck to you and your family x
You mention her 'new environment' of a residential care home - was she in her own home before? Is this a temporary recovery facility or permanent arrangement?
Yes 3 months is very early , my Husband who had a tbi many years ago but does still have mood swings that have been difficult to deal with at times .He has been kept on a large dose of fluxitine tablets 1200mg a day . Makes him a little better , sometimes but I find depends on the environment he is in as he can take a dislike for someone and that’s it he also has to be watched around our grandchildren as if they are noisy he can lash out . I have found headphones and music helps keep the noise at bay for him and calms him down.. as been said it is very early days for your god mother so things may settle over time
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