My 66 year old mother and Hemorrhagic stroke

Share your story Caring for someone
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
22

Dear Lily,

I can hardly wait to hear how your mom is doing. And how you are doing.

I have a few other things to share that I hope to note now, while my mind is in fair working order. Don’t wear yourself out reading. You likely won’t need it for a while.

When mom becomes more coherent, you may notice changes…physical, mental, cognitive and emotional. The hospital will help work on the physical, and a Speech Therapist at some point for cognitive (I hope). By mental, I mean anxiety and depression.

I can only speak for myself, but many others hear have also mentioned emotional issues. As I said before, mine have mostly been helped by Duloxitine and Self Control, but they are still there, just that they lessened to the point I can handle them better.

At fisrt I felt guilty for how much time and attention I took from others, for not being available for my children and grandchild, for living when others did not.

Later, I felt useless, a burden, and was angry I did not die because it might have been easier and I might have been with those before me. Many of us have odd dreams now. (That burden thing is what caused the depression).

Most of my physical issues come from anxiety. Not in the way one generally thinks of anxiety. I have vision issues that cause me to not know where I am in space. I could be standing on my head for all I know. Even that has been worked out to the point I can ignore it and get around. Noise, lights, patterns and movement bother me, but I am acclimating to them for the most part. It is the unexpected that causes the most problem.

In the early days in hospital, I can’t tell you enough how nice it was to have someone hold my hand or lotion my feet and legs or just massage my extremities a bit. I hear it helps with later movement as well, to keep those muscles moving even if someone else has to do it. (Ask Dr. first please about lotion and movement, due to upcoming scans or blood pressure issues).

Just food for thought.

3 Likes
23

DeAnn,

Mum is non responsive .
She’s not waking up .
They did another CT can and showed brain is still swollen and today cos she had to have more sedation for the scan she’s even more non- responsive (which is to be expected i know)
The doctor said they expected more from mum and she’s showing incorrect movements .

The plan is wait and do a MRI on Thursday to check the brain stem?

I’m praying she’s just taking longer cos of whole 10 days of 3 diff meds sedation plus more today for the scan .
Thank you for writing to me with more information and concern despite your battle and challenges . You’re strong and here I’m struggling to write anymore despite being healthy .

4 Likes
24

Mum is unresponsive but I’m trying to take hope from your mum’s story.

I can’t stop crying .

3 Likes
25

Hi Lily

I’m so sorry you haven’t had better news yet. Don’t give up hope. Like you’ve said, your lovely Mum has really been through it and had lots of sedative meds.

When my Mum took a dive a few days in the docs were very concerned things were not going the way they’d hoped but she did rally. Never give up hope.

I found that writing a diary really helped. A lot of the time it was just factual for myself to remember what happened when and it then became more of a diary where I was writing to my Mum. It was just a way of getting my thoughts out, have a good cry and park it somewhere.

I really feel for you, the way you describe how you’re feeling are so familiar to me and I wouldn’t wish it on anyone.

Please make sure you are eating and trying to switch off for short periods (I know it’s impossible to do for any length of time) but just a bath, a short walk, watching something familiar on Tv where you can ‘check out’ for 30 mins can make a real difference.

Sending positive vibes to your Mum and hugs to you x

3 Likes
26

@Lily3 sorry to hear your mum isn’t responsive yet. Must be so hard for you. Some people take longer than others to come around & i’m sending lots of pisitive thoughts your way for better news on Thursday.

Look after yourself too.

Much love

Ann xx

4 Likes
27

@Lily3 and @nsw72,

I am in US so my time is a bit different from yours. I looked for this first thing when I arose from bed, then I just could not reply. I so hurt for you. Fear is an ugly thing. I know it does not seem hopeful, and you may be told it is not hopeful, however, hold out hope anyway. You won’t be sorry, as if it truly is not hopeful, it won’t make it any easier later. She will feel and hear your hope.

It was also not hopeful for me and they actually put me into hospice. My sister was able to get me out after a response I had to a story she relayed told by my brother.

I also was sedated for long days as well as on ventilator for much of that time. I don’t know how long it took, but I am told my daughters were a mess and could not think at all what to do or how to handle it. My sister kept a journal but it started toward the end of sedation, so I have no idea what happened from Aug 1 to August 27. I do know it was at least 3 days out of sedation before the response.

I would love to tell you your mom will be like me. I cannot. You have told us she has a further issue with cancer. I also had further issues with kidney failure, liver and spleen damage, lung damage and received a heart valve replacement, then later when I was stronger a completely new Aorta.

I am telling you this so you will know, I did not go in to hospital in very good shape, so there is hope.

I so wish I could be there to hold your hand and have my daughters speak with you as they know so much more than they have been able to share with me, due to the emotional aspect of it. I am so glad @nsw72 is here to give you help. And I agree the journal will help. My sister gave me the ones she kept, after 2 years, again for the emotional aspect, she didn’t want to share it earlier.

4 Likes
28

I’m so sorry to read this news, it’s so hard and as @nsw72 says hard to know what the future holds yet. Can I suggest you keep on talking to your mum as much as possible, let her hear her favourite songs, books, keep her updated with anything and everything she was interested in, even if it was soap opera or the likes. Because she is in there, hearing everything and one day might respond, so try to remain positive in her presence. Because there’s no way of telling that she’s not aware or hearing! Stay strong, there’s always hope :pray:

3 Likes
29

Hi.

They think her brain stem could be affected and prob why she’s not walking up .
Not even a Flicker of eye movement, nothing.

I haven’t been too see my beloved mum in two days and I feel like I’m making it all about me. I’ve stopped going over , I’ve stopped praying to God.

My sister just messaged they’ll try to do MRI as soon as spot becomes available instead of tomorrow.

The longer she lies unconscious the more it tells us she’s damaged.
I keep seeing “vegetative coma” online and I’m trying to stop thinking the worst.

Perhaps she’ll take weeks or even months.

At this point I’d rather my mother return to her lord whom she glorified all her life which was always marred with sickness rather than send her back to live in constant pain.

I am angry and I’m sorry for the way i am talking.

3 Likes
30

I completely understand. My mother had a rare liver disease and needed a transplant. They found a liver for her, but she was too ill by the time it arrived. It was hard to go from praying for her to stay with us, to praying for God to take her home. My heart and gut knew well before my brain did, that it was time.

Praying for someone to be free to go home is not a bad thing. Actually, I think of it as a kind act. With the exception that I had not made arrangements to ensure my daughters would inherit my home, I was well ready to go when they saved me. I feel the same now. I am ready when the time comes, but while I am waiting, I want to have the best life I can here.

Her condition will become more clear in due time. In the meantime, it is hard not to think of all the differing possibilities and how you and she will cope. I don’t know that you can really plan ahead for any of that. Or that it will be helpful to you or her in any way to dwell on it. But still do not feel guilty for the thoughts, but do try to keep them at bay by possibly writing a grocery list, or a list of things you would tell mom, or a thank you letter or a letter of appreciation to your sister and brother who seem to be helping out with mom as well.

3 Likes
31

Oh Lily3 you never need to apologise here and this is just where you need to be right now. Family also suffer after the stroke of a loved one and they need help and support just as much for you are grieving!

It’s another reason why we are all here; to help you get through this too.
Right now all you can do is prepare for worst and hope for the best. If indeed this is mum’s time to return to her lord, she is giving you all this time to prepare so it doesn’t come as such a shock. Make your peace with her, be with her, love and forgive her, just as she has done for you all your life.

You have your whole life ahead of you, forgive yourself for taking a much needed break, she would understand. Believe it or not, you and your family have the hardest part in this right, your mum is in the best care, you are not! You need to take care of your own health too.

4 Likes