My 66 year old mother and Hemorrhagic stroke

Share your story Caring for someone
1

Hello to all you brave people.
My beloved mother had a H. Stroke on last Thursday causing a massive bleed. During the craniotomy they also found abnormal tissue which came back as Cerebral amyloid angiopathy.

I dropped the ball in caring for my mum in terms of monitoring her BP as this was mainly caused by hypertension and the CAA causing weakening the vessels however I still can’t make sense.

Wednesday night she was in bed all day and Thursday morning I took her GP where she was throughly examined by a paramedic . BP was okay . We walked back town and even did spot of shopping but that evening her whole world along with mine changed.
A week on Mum is still heavily sedated now fighting pneumonia.
It doesn’t help the fact she suffer from Non Hodgkins Lymphoma, fibromyalgia and diabetes .

Worst day was when the senior doctor asked if my mum survived would this be a life she wants ??
I mean she yes, she has lost her left side but we don’t know and won’t know the extent of brain damage once she wakes up .
I know she can fight this despite her other health issues .
I just need some words of strength from someone who has suffered like mum and has come out better and even stronger than ever .
Am I being deluded?
Have I lost my old mum? If she wakes up , will she be a totally different person?
They talked about dementia, pulmonary infections and it seems like all these seeds of doubt being planted in head.
Mum is in London hospital in Queens square and getting the best help but sometimes I think they want us to give up hope but I know they are just painting the worst case scenario.

3 Likes
2

Hello Lily,
I am not sure if this will help but my 63 year old husband was in Queens Square on 12 March and he got the best possible care there. Keep your spirits up, it’s very very tough and I hope your mother gets well soon. You will find a wonderful community here. Take care. Marie

4 Likes
3

Hi @Lily3
Welcome to the forum. Very sorry you had cause to join us.

It’s impossible for us to say what will happen in any one specific base but the norm is that with effort and time there is recovery. It’s possible that there will be personality changes, entirely likely there will be emotional changes but if your mum has already been besting other health challenges she may well be equal to the increment.

Queen Square has one of the best replications in the country so 'you’re lucky’ in that respect. Some previously written what posts that might help you are these three : This first one because it plots over some time a journey that will have some similarities for you

the 2nd because it’s written from the point of view of the survivor
40 things to know - General - Stroke Association Online Community and the 3rd because it is our collected thoughts often shared when people join Welcome - what we wish we'd heard at the start - Community - Stroke Association Online Community

The more you read the more you’ll get an understanding

Ciao
Simon

4 Likes
4

Hi @Lily3 & welcome to the community. Sorry you’ve had cause to join us but hopefully you’ll find it a useful place to be.

It’s very difficult to say how your mum will be. Each & every stroke is different & a lot will depend on how she is when she comes around. It really is a waiting game for you which must be exceptionally difficult.

A lot of stroke recovery is hard work & determination & if your mum has that she should make progress.

You say you dropped the ball with your mum. I doubt that and try not to beat yourself up about missing her high BP. It sounds to me like you’re a very caring daughter & have been looking after her really well. I’m sure your mum woukd say the same.

From yours and others comments it sounds like she’s in the best place for the best care.

Stay strong & things will become clearer in the days to come.

Best wishes

Ann xx

4 Likes
5

Thank you Simon!
Just leaving the hospital and tomorrow they’re gonna try to bring mum of full sedation .
When I saw what think was a yawn from her a while ago I felt like jumping with joy.
Doctors have told us to lower our expectations so taking each moment as it comes

Thank you so much for you reply ! Much love

3 Likes
6

Thank you Ann.
As you can imagine times like these we as humans start blaming ourselves and all the what ifs starts racing in our minds day and night.

Thank you for taking the time out of your day to reply to me .
Lots of love :heart:

4 Likes
7

I hope your husband is doing better .
All the best wishes , prayers and love to you both .
:heart:

3 Likes
8

It’s very natural to blame ourselves but it sounds like you’ve done a great job with your mum.

Hope everything goes well with bringing your mum off sedation.

Sending lots of positive thoughts your way.

Ann xx

4 Likes
9

I hope you are finding some good news today. Each person is different. I can tell you I was in a similar position but at 10 years younger. I would have been fine to pass, but although it has been hard, I have continued to get better through time, even after 2.5 years. You will know your mom better than anyone here, but making decisions for someone else is harder than making them for yourself. I did get a bit depressed, more like a lot depressed for a bit because I felt so useless an dependent, but with much help from people here and an anti-anxiety/anti-depressant, both have gotten to a place where I have better control of my emotions.

I will be holding you and your mom in the light. Please feel free to interact here for ideas on how you might be helpful for your mom at this time. I was a bit fearful of being alone while sedated as I could not talk, move or interact/communicate with others to get what I needed or let them know I could hear them and I was ‘in there’. It took awhile after they started taking me out of sedation for 15 minutes a day. Actually it was a funny family story between my brother and I. His telling of it was what I first reacted to. After that, it was my sister playing my favorite music on Pandora or Spotify from her phone that got my reacting even more.

I hope you will try to rest as much as possible, remember to eat and take care of yourself as well.

3 Likes
10

Hi Lily
I’m so sorry to read what has happened to your Mum.

I can completely understand the awful, desperate feelings you currently have. I had the same 6.5 months ago.

It feels like a never ending waking nightmare at the start, and the emotional kicks in the stomach followed by hope and back again is a familiar feeling.

Everyone’s journey is so very different so it’s just not possible to predict how your Mum’s story will be, but I can say that being able to speak with this community really helped. Just a place to pour out what I was feeling.

It’s still really helpful now. Mum is home and recovering well, I am so grateful for that, but it’s not an upward trajectory - there are peaks and troughs along the way.

The people here are great - brutally honest, realistic and a wealth of knowledge. No false hopes here but also there are so many amazing stories of recovery and hope.

Don’t give up that hope, it’s such very early days at this point. Best advice is to ask questions, be clear on what you want to know and be very nice to the staff looking after her. Even when you feel frustrated - they all have her best interests at heart. And she is certainly in a wonderful facility.

Last bit of advice. Look after yourself. Whether that’s a bath, a takeaway, a long walk or a deep sleep. You’re going to need all your strength so remember that you need to treat yourself kindly.

Feel free to message me if you think that would be helpful.

Nighean x

Look after yourself too.

5 Likes
11

Hello Nighean,
Thank you for reaching out .

Last night I slept around 5am reading up on your thread and it is a tumultuous journey but the positive moments bought me so much joy!

My sibling just got off the doctor and they said mum is off full sedation . She is still not awake as that would be a very slow and steady thing however she moved both her legs???
She is said to be paralyzed down whole left side ?
Was that a twitch or am I allowed some hope that her good brain with time will compensate for the bad side? See I am jumping ahead of myself .

We’re gonna go see her at 4:30 today and find is ticking slowly .
Just the thought of her hearing people no familiar voices around her will be so terrifying !

4 Likes
12

Hi DeAnn!

I’m so happy you’re here today and that is all behind you now to a point but most importantly you’re able to laugh about some points !

Doctor just told us on call mum is off full sedation.
Despite being paralyzed down entire left side she moved both feet ???
And she’s trying to cough .
Can you please give me an insight if possible is my mum able to hear most sounds and voices at this points?? She was on 3 different sedation meds and today came off final one at 9am . You said you could hear things but were unable to move or ask for anything, where you in and out of consciousness? Was it like locked in syndrome or the sedation just slowly weaning off ?

My mum is all alone and our visiting time is at 4:30.
She has had so many surgeries in her life and cos she doesn’t speak English hospitals kindly allowed me to be there beside her as her translator but we know this is something off the scale here and the two hours get is Godsend .

I know mum’s road to recovery will be long and a slow painful one but in terms of pain can I ask do you get or got headaches/migraines ?
She already suffers from depression after dad’s passing ; a heart attack out of the blue but such a stubborn lady she is could never get her to take antidepressants.

I’m 41 but feel like a 5 year year old just waiting for her to open her eyes and to start scolding me for not answering her calls. :frowning:

3 Likes
13

[quote=“Lily3, post:11, topic:38873”]
Hello Nighean,
Thank you for reaching out .

Last night I slept around 5am reading up on your thread and it is a tumultuous journey but the positive moments bought me so much joy!

My sibling just got off the doctor and they said mum is off full sedation . She is still not awake as that would be a very slow and steady thing however she moved both her legs???
She is said to be paralyzed down whole left side ?
Was that a twitch or am I allowed some hope that her good brain with time will compensate for the bad side? See I am jumping ahead of myself

3 Likes
14

I don’t know what happened…post got deleted or I replied on the wrong chat.

The diazepam makes me loopy!

I’m so happy to hear your success story and even the fact you and your brother had that little moment .

I was asking with mum off full sedation how much do you think she can hear the people around her ?
She must be so terrified !
Having been told mum is paralyzed down left side they just told us on phone mum moved both her feet and is trying to cough .
We are elated but trying to keep our expectations low as advised by the doctors .
I will write to you soon coherently DeAnn .

I’m just counting the minutes in bed until it’s 2pm as our visiting time starts at 4:30.

Much love to you

2 Likes
15

Hi Lily3 . Buy Jill Bolte Taylor book My Stoke of Insight. Her Forty Things I needed most. At back of book ,Appendix B will answer lots of your questions. Look after yourself , your health is vital now, and check your BP. I speak from experience

2 Likes
16

Can you tell me your first reaction when you finally became somewhat cognizant ? How blessed were you to see your beautiful brother already there

I am thinking is it best we go to mum for an earlier visit ?
Over how many days did they start to wean you off ? Today is mum’s second day and I’m so so sad that when she comes to even slightly she’ll see none of loved ones .

2 Likes
17

Hi

Ordering it now .
Thank you x

1 Like
19

@Lily3
I put a link in to the text of that in the post above but for ease of reference

I’m glad you found @nsw72 journey useful to read :slight_smile:

Xtra glad your beginning to see progress but steal yourself against the disappointment of the two steps forward one back type because they’re very likely to be in your future - give it time and things will improve :slight_smile:

Ciao
Simon

1 Like
20

Hard to know what the future holds at this point Lily but I can only say that with Mum I just started eternally positive. However bad it seemed I just had to believe things would improve.

My Mum was often unresponsive during the early days - we kept talking to her.

What I will say is once she came home she had so little recollection of her time in hospital, she said she knew she was safe and wasn’t scared. That was my worry too.

Talk to the staff about your worries and tell them if there is anything they can do for Mum which will help her feel safe - maybe them referring to you by name or use her pet name.

It’s a hard road but keep faith x

I hope you’re able to see mum soon and get some comfort

2 Likes
21

Dear Lily,

You are just over my own daughters’ ages at 35 and 38. It was so very hard on them to know what to do and navigating around my care and that of my grandson, the pets, the house, jobs, and their own fears and sadness.

I could not move my body, some from strokes, some from sedation. Sedation was honestly wonderful. I could hear and understand the people around me, but could not respond. I also had some very lovely ‘hallucinations’ to keep me entertained. They did seem quite real at the time. I think most of these occurences were in coming out of sedation. It did take at least a few days because they wondered if I was actually aware of anything on my own. My brother was on the phone with my sister who relayed the story… A longstanding family feud (in fun) between he and I. I was able to respond to him in my usual way, which was a rude hand gesture. That was when they knew I could in fact move my hand some and that I understood.

My sisters took turns staying with me after that, to try to understand my grunts and gestures and tell me to use eyes to blink twice for no, three times for yes. When I was able, I would squeeze their hands 3 times for I love you, but they thought it was to say yes for no reason. LOL.

In the US, even during Covid, I was allowed 2 visitors per day, without limit on the number of hours, so my 4 sisters and 2 daughters took turns- one in the morning and afternoon, one evening into night, So for awhile there was someone with me 8 to 12 hours per day. Mostly I slept, likely very nice for them!

For your mom, her biggest worry will be you and your brother, the home and bills. She will just be wanting to help you. I can be almost sure of it.

Allow mom to rest as much as possible as well, and give her encouragement whether you think she is aware of now. Take care of yourself, if not for you, then for her. She will know if you aren’t and it will worry her further. It is fine for you to cry in front of her, and for her to cry in front of you. She knows this is scary for all. She will probably try not to cry in front of you because she’s the mom who generally thinks she must stay strong in front of you.

Bless you for looking for help for your mom at this very early stage. That can be a huge help to her and hopefully to you.

4 Likes