I don't even know where to start

[OneR2Esses]

 Hey everyone. 

This past Thursday (10/21/2021) my mom collapsed in our local grocery store and was found by another shopper seizing. 

 

An ER nurse called and gave me that exact info and added that they think she has blood on her brain and or a burst aneurysm. I rushed to the hospital in time to see her for a moment before medical staffed wheeled her in for an angiogram. 

 

The doctor told me what our surgical options were; coil or clip, and that a clip would be preferred as long as her vessels were strong enough. 

 

I was in shock and couldn't really think of any questions to ask. 

 

It's been two days and so far the doctor is "very surprised" by how well my mom is doing. She is able to speak, after some coaching and firm sternum runs and can move all of her appendages. Physically, she does not appear to have any deficits. Momma is still incredibly groggy, though. I can only get one answer from her at a time and it's requiring a lot of repeating myself and trying to rouse her to get any more information from her. 

 

They have her restrained for the time being, as she has multiple IV's, an NG tube and IPC's on her legs to prevent clots. The restraints irritate the **** out of her and she becomes incredibly agitated. She's a side sleeper and can't roll over with the restraints. She can't get comfortable so that irritates her more. I tell her every single time she tells me to "get the cords off" that I can't bc it's for her safety, don't want her to pull the tubes etc etc. Then she'll remember or notice her NG tube or catheter and ask about that. She doesn't know why she has to have them, so I tell her.. every single time. 

 

I know all of the confusion is bc of the injury so it doesn't bother me to repeat myself.. yet. 

 

I haven't seen or spoken with the doctor since the date she was admitted. I honestly don't know what to ask. I don't know what to anticipate. I don't know how to prepare for her homecoming or to send her to a rehab (I know it's early still). 

 

The nurses just keep saying "no new/ major changes" & "we're just waiting & watching"  but what are we waiting and watching for? 

 

I don't really even know if she just had a bleed or if the aneurysm burst. I don't know where in her brain it was located. Probability of recurrence? 

 

I just feel very confused and left out of her treatment. I don't know what questions to ask. 

 

A few things bother me and I don't know who I need to speak to, to have them addressed. 

 

Momma wears contacts in both eyes and the nurses only found one. Each new nurse I have to tell them, the previous nurse doesn't mention it. Momma has partials but I can not remember if it's top & bottom or just the top, which I have at home with me. I have to tell every new nurse that as well. Her mouth is CONSTANTLY so sooo dry!! She's getting gunk build up all around her mouth & her lips are so dry and cracked and she's always asking for water. She's NPO so im using those mini sponges, but that's not going to quench her thirst. 

 

The lack of communication on the staff is, quite frankly, scary. What else are they not telling each other about my mom's care?!!

 

If anyone could help or guide me on what kind of questions to ask and what to do about the lack of communication I would be extremely grateful!!!

 

Thank you for sticking around & reading my rant 😊

[Tina]

Hi a very warm welcome to BTG  

 

So very sorry to hear about your Mum, a very scary time for you both. So glad you found us.

It is very early days for your Mum in her recovery.  Every little thing she does will totally exhaust her. 
She has had a major trauma to her brain. It is working overtime to repair and also work as normal.

You mention they did an angiogram but not confirmed if they have gone ahead with her surgery yet.

 

I had to wait for 14 days for the swelling to go down in my brain before they would even attempt my clipping. Coiling was not an option for me. They were watching and waiting for the right time to hopefully operate. I had to lie flat on my back too. Like your Mum, found it very uncomfortable and difficult to sleep. My mouth was also very dry and uncomfortable from nil by mouth. The retraints sound just awful but may be necessary for her safety.

 

The lack of communication must be so very scary and frustrating for you. Firstly I would try and make an appiontment with her Consultant so they can explain to you everything they have done and are doing so you have a better understanding. Especially bring up about how the constraints are irritating her and affecting her sleep. Sleep is so important for mending her brain. 

 

They cant always give you a time as everyones recovery is different.  Write down all of your concerns and questions so you dont forget anything.  As it is early days they are watching and waiting (their words) because the brain has to slowly repair and her body respond to her treatment. 

 

Your Mum seems to be doing well which is all very positive, that she can converse with you and move her appendages.

From my own experience of recovery in hospital, i was in there for just over a month. My short term memory was dreadful, my husband  had to repeat many times. I also dont remember lots that went on. I got confused. Hated any loud noises. Was very light sensitive, my Daughter got me some sunglasses which helped. I slept most of the time. So very reassured that my husband and family were there.

 

I also had double vision and balance problems, which were scary. I would definitely try and sort her some glasses and see how she gets on. She may not want to be bothered about reading but to be able to see better may help. They may refer her to an eye specialist at a later date, they did for me. Your poor Mum bless her, will be trying to process whats happening and it is very normal to become aggitated. This will improve with time. 

 

Just be there for your Momma as you have been bless you, not an easy time for you. Remember to look after yourself too.

Please keep us updated and let us know how you are both doing when you can, we are here for you, rant any time  . 

 

Take care 

Tina  

[subzero]

Hello and also a warm welcome to BTG.

 

Also so sorry to hear about your momma. We totally understand the stress and anxieties your are going  through, and the feeling of helplessness at the lack of information you are receiving.

 

Tina is right to say it is early days. At this point it can be difficult to accept information is not forthcoming, however she is in the hands of a highly specialised team and even they don't  have all the answers at this point.

 

As Tina advises, do ask to see the consultant to ask for help in understanding their assessment of your momma at this point. Try and accept that with brain damage, many answers about short and long term complications may not become apparent for several weeks and months down the line.

 

Their immediate consideration is to stabilise your momma and carry out the coiling or clipping when appropriate. This can take days or maybe weeks but they are there to make the right decisions at the right time.

 

You mention contact lenses😊, I smile because with Mrs Sub's it was her two miniature hearing aids! For these support nurses, finding them and refreshing the batteries were definitely low on their list of priorities as they gave their specialist care to my wife 3 days post bleed and in an induced coma. 

 

Your momma has survived so far and that is great news. The survival rates for SAH are not good reading. 

 

Not easy for close relatives like yourself to accept when you try hard to come to terms with a haemorrhage diagnosis that you know very little about. Your knowledge will improve very rapidly, and that is where the BTG members become extremely valuable friends.

 

This site contains so many personal accounts of relatives and survivors that have 'been there' in these early days of confusion, and now with years behind them they can help support you and momma in the days ahead.

 

It is so important that you look after yourself too amid this anxious time. Eat and rest well so you can give her your best support.

 

Take care and our thoughts are with you as momma begins her recovery.

 

 

Subs