Mother in law in hospital with condition deteriorating

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Hi all, looking to speak to survivors of stroke to understand what is happening in my family at the moment. I’ll try and keep it short!

A few weeks ago my mother in law was admitted to hospital, long story but she had been having signs of stroke for over a week and it was not acted upon. In any case after 5 days of hell and waiting, MRI confirmed multiple infarcts. She was discharged and sent home awaiting referral to stroke specialists within 2-3 weeks (don’t get me started on this). Her condition was reasonable, she was speaking and moving with some twitching in her hands and leg but perfectly easy to understand etc, just tired and a little confused as you would expect. Within a week we returned from a trip to find her condition seriously deteriorated. It emerged that once again serious signs were ignored (I believe she had a seizure and her condition was clearly much much worse). She was very vacant, with odd glimpses of being able to speak, clearly uncomfortable, not really able to move well and very emotional. It was like she had aged 30 years in days. We called 111 who called an ambulance. Since then we have been in limbo land. A CT showed nothing and when she finally got to the MRI yesterday after waiting days (AGAIN) she was very agitated and did not comply so will need to be sedated. She is currently only speaking occasionally, mostly sleeping, very vacant, clearly having vision issues, has severe discomfort in her limbs and is suffering with incontinence. Until thr MRI we cannot get her transferred to the specialist stroke unit. So I guess my questions are as follows
Can she understand what’s happened to her? How does it feel to be in this position?
She refuses to discuss any topics about her health (she has always been a bit resistant to discussing difficult topics as is private in this way) so how can we get across to her what the future holds? How she will have rehab for months etc before she can come home presumably.
Was anyone here in such a sorry state and actually recovered to any meaningful extent? At the moment it almost feels as though she is in a semi vegatitve state. It is hard to imagine recovery. However she does have the ability to speak, is just not doing it very much.
Why is she deteriorating so badly and how can we help if she is not getting any rehab?
Is there anything I can send to hospital with my husband to make her feel better? I have sent things I think I would like - a new fluffy dressing gown which she apparently likes, some perfume, some face cream, PJs. Is there anything more practical I should send? That can actually make a difference?
This is all just devastating and I want to try and help. I cannot really see her myself as I have babies and they don’t let them on the ward but her sons and partner are visiting multiple times a day.
How should we speak to her, like we always have or more slowly and simply?

Any advice and experiences really welcome. We are just at the beginning of navigating this awful reality. Thank you.

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Hi Dilly. This is a very sad situation. You ask if she knows what has happened to her. Stroke affects individuals in different ways. When I had mine 7 years ago, I simply fell over and wondered what I was doing on the floor. I certainly didn’t think I’d had a stroke. I can’t even remember the paramedics or the trip to hospital on blues and twos. I have vague memories of being assessed and put into bed, but my mind was ‘out of it’. I wondered if I’d died. I had no movement on my left side, but I did have speech and remained continent. However, I had no interest in anything but just drifted through each day.

Fortunately, the brain can re-wire itself. After a long time and a lot of hard work I can walk with a stick and do a range of things. In rehab, I found conversation tiring but music comforting. I also felt the love and care people showed me. I could write more but, yes, you can recover. I wish your mother in law all the best.

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@Dilly1 welcome but sorry to hear your mother in law has had multiple strokes.

It is difficult to say if she knows whats happened to her. Its possible she does but also possible she could be quite confused. If i had to say how it feels to have had a stroke i would say i was stunned by the diagnosis, couldn’t really take it in & almost refused to believe it. Your mother in law sounds worse than me though so could be feeling very different.

After my stroke i found talking exhausting as i did listening to conversations. I guess i was perhaps fortunate that I couldn’t have visitors so the need to talk was limited. I recall sitting on the side of my bed having a short conversation with the lady in the next bed & how awful it made me feel. This might be why she doesn’t say much?

Sounds like you’re sending her lots of nice things in already but if there is something she likes doing maybe something along those lines as long as it won’t distress her too much if she can’t do it.

You could try some small exercises with her to help her start her recovery. Speak to the staff on the ward & see what they suggest.

I would talk to her as normal if she can understand you. She might not respond because shes too tired but still talk to her. Talk about good memories & all the things she has to look forward to.

Stroke recovery is a marathon and lots of patience & pacing are required.

Sounds like she has a loving family around her which will mean a lot.

Best wishes to you all.

Ann xx

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Shwmae @Dilly1, I couldn’t say for certain as I would have to be privy to everything the medics know, but one thing I can vouch for in my own experience is the intense brain fog and confusion I had for months after being struck. It’s not that I couldn’t understand what people were saying, the amount of energy and effort needed to utter a coherent, extended reply was beyond me. I could manage mostly aye and nay, and wish that people wouldn’t ask me “complicated” questions. Especially, as I was having enough of an issue just existing. I think gentle does it. Positive distractions, tactile and olfactory things, that require other senses to communicate with the brain aside from the complexity of language.

I deteriorated once I had left hospital, when I say deteriorated, I was out of the “care bubble” and back into the “real world” with actual things that needed addressing and for me to be attentive to. The thing is, I know that sometimes the first few weeks of post stroke can send the brain into hyperdrive frenzy, some people feel euphoric, others have the Pseudobulbar affect, some get angry. The the brain then settles down, and possibly that’s when the confusion and brain fog set in.

This is purely conjecture on your mother-in-law’s behalf as I don’t know the specifics of her injury, personality, lifestyle, or medical summary. However, I hope it broadens the spectrum of perspective on what may be occurring at this juncture.

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Thank you for your reply! I think the thing that’s panicking everyone more than physical disability (not to undermine that, it’s awful too) but that her mental decline puts us in a state of not knowing what she can or cannot understand or think. It’s good to hear your side of the story thank you x

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Hi @Rups, that is a really useful reply. Thank you. It’s incredibly reassuring to read your response written so well and to be honest with such a good vocabulary! I think we are all worried she has been brain damaged and won’t “be all there”. Physical challenges will be awful but the mental side of things seems so much more scary. She’s a very “young” 67 and was very active, gym-going, holiday-loving and a bit of a party animal at times as well as a hands on man to our kids. It sounds like your stroke was quite severe. Are you as coherent verbally as you are writing? What sort of difficulties do you face now? Thanks again. I suspect she has had another stroke and that will be the explanation we face but can’t quite understand why that happened when her BP was controlled and she was on the correct meds etc. No MRI again today so we are still in the dark.

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@Mrs5K thank you Ann. That’s a good description. I guess I am kind of worried she’s “lost her marbles” to describe it very crudely and for us as a family this is probably the biggest fear. Physical rehab seems less scary than the mental side of things. I’ve read quite a bit about it and I’m struggling to understand the thought process of stroke victims. It sounds from hearing first hand the confusion and overwhelming sensations do eventually fade and you are left in a better state than she is in now. How is your health/life now? Was your stroke recent and ow severe was it? Many thanks x

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@Dilly1 stroke recovery can take a long time but very often people improve quite well & i’m sure your mother in law will too make progress. My stroke was 11 months ago and it affected my vision, balance, concentration, emotions & had left sided weakness. My speech and memory were ok but i struggled to take anything new in. When i look back & am in a far better position than i was but still struggle with walking, concentration, emotions & the good old fatigue that everyone seems to get. In hospital i was able to do little for myself but can now do loafs more…some in an adapted way. There is much hope for your mother in law. It sounds like she is a strong lady & that will help her loads throughout her recovery. Be patient, offer much encouragement & celebrate every success however small. Ann xx

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@Loshy tbh I don’t know anything as just joined but good to know the writer can still write for sure!

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Shwmae @Dilly1, the right and left side of my brain was damaged, so I had the hurdle of some primitive language function diminished. This was mainly to do with writing, not being able to parse a good sentence, muddling up tense &c. I still mix in/on without knowing I’ve done it, have to go back and check. When I had enough clarity to speak fluently again, I couldn’t stop. I talk to everything, animals, insects, plants, and sing to myself all day long. I also bought two smart speakers, one for my bedroom, and the other for my study, so I can talk to a computer too. This is also a technique for quashing the at times obstructive inner dialogue. I have issues with impulse control, so a sentence gets pulled like a bowstring, before being shot out of my mouth without the benefit of foresight. All this though may not be applicable to your mother-in-law, at it’s most simplistic level, Jill Bolte Taylor’s observation rings true to some extent, a recent stroke survivor benefits more from the sound and reassuring words of someone’s voice rather than being talked to as if they can’t understand what is being said.

I am two years post stroke, I was forty-four. The severity of a stroke is relative to the person who has had it. While my physical recovery, apropos my extremities, was mostly okay, apart from shuffling (hypometria) which lasted for a year, I had severe cognitive spatial-visual issues, which is still rather ongoing. My external balance is fine, my internal balance is rubbish. I can dart up a flight of stairs, not a hitch, but walking down a slope is perilous. I have worked through most of the issues attached to what they call the Wernicke’s area, that part of the brain that interprets language and information but I had to (as @Loshy mentioned, my trade is writing).

I haven’t mentioned anything about the emotional distress often encountered after stroke, but I think there are others here who may express issues related to that better than I. I had acute anxiety but little depression, and I have a blunted emotional response as a result of my injury.

So, all things said and done, stay positive with your mother-in-law’s progress, she is rather young and her brain will be quite pliable in adapting to its circumstance, but it won’t happen overnight. As a caveat, we can only reflect on our own predicament as survivors, and hope that this pool of knowledge can provide some direction and hope on the road of recovery.

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Hello, I just wanted to give an update in case anyone ever stumbled upon this thread and it helps anyone. It has turned out my mother in law was misdiagnosed with a stroke and her rapid progression is in fact due to CJD. It’s an awful and rare prion disease which causes stroke like symptoms initially and then rapid dementia to cut a long story short. It progresses extremely quickly and is fatal. Tragically her prognosis is only a few weeks. We are all shocked and devastated. But I wish you all the best with your recovery. X

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Gosh @Dilly1, I’m so sorry to hear that. It’s a severe condition, wishing you and your family my deepest felt wishes throughout this difficult time.

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@Dilly1 oh my that must be such a shock for you all. Sending heartfelt wishes to you and your family at this difficult time. Take care xxx

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