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Massive brain stem stroke
My husband is 48 and had a massive brainstem stroke nearly 2 weeks ago. Everything is a nightmare..he cannot move apart from eyelids and is having oxygen support. he has managed to survive a chest infection with antibiotics but the doctors say he will keep getting them. They wanted to not feed him a few days ago and let the infection "take him"- in their words. We couldn't starve him to death so he is having naso gastric feeding. Is anyone else in this terrible position? I want to give up too as everything is too hard...
Hello Lee..so awesome to hear that you made it out from that dark sounding place..how are you these days?
My husband has normal intellect-and now that he cannot talk ( he was man of very little words before) he has lots to say! He is very clever and can now move his slowly strengthening hand over his alphabet board. At first it was just blinking to yes and no- oh how hard that must have been for him. Now is also so hard as having been a very computer/technical savy person..he has to watch people like me struggling to work his phone and computer at the hosp- it drives him to tears of frustration. I feel like his first speech therapist was a life saver for helping him communicate! Was it this way with you too? He is getting better mouth/tongue movement- for first 2 months his mouth was almost sealed shut. We give him wee taste of lollipops now- it is like heaven for him. What a tough long road it is..he is so tough To be honest it is hard to be positive about the future- worry how we will cope when he comes home.
Hope things are easier now for you!
xx
My husband has normal intellect-and now that he cannot talk ( he was man of very little words before) he has lots to say! He is very clever and can now move his slowly strengthening hand over his alphabet board. At first it was just blinking to yes and no- oh how hard that must have been for him. Now is also so hard as having been a very computer/technical savy person..he has to watch people like me struggling to work his phone and computer at the hosp- it drives him to tears of frustration. I feel like his first speech therapist was a life saver for helping him communicate! Was it this way with you too? He is getting better mouth/tongue movement- for first 2 months his mouth was almost sealed shut. We give him wee taste of lollipops now- it is like heaven for him. What a tough long road it is..he is so tough To be honest it is hard to be positive about the future- worry how we will cope when he comes home.
Hope things are easier now for you!
xx
When I had my stroke, at the ripe old age of 42, the doctors all thought I wouldn't make it. I was fed through a tube, too. I had a tube go directly into my stomach. I was fed that way for over 3 months!
Even in your husband's awful condition, and it does sound bad, he will most likely improve. If, and when he does, it will probably be slowly. It'll be so slow, it'll e painful, and unnoticeable.
In his current condition, can he communicate with you? He may have quite a bit to say, but can't get it out.
Been there, too.
Lee
Even in your husband's awful condition, and it does sound bad, he will most likely improve. If, and when he does, it will probably be slowly. It'll be so slow, it'll e painful, and unnoticeable.
In his current condition, can he communicate with you? He may have quite a bit to say, but can't get it out.
Been there, too.
Lee
Hello there....how are you? what has happened in your world?
Thankyou so much for your prayers! It is 3 months now and my husband is largely out of danger..moving his hand so he can point to words, holding his head well, starting to make sounds. All these things seem so small but to us they are major! Where he will be in 3 more months i am not sure but the mental preparation for him coming home is starting to be real and scary.
My thoughts and love go out to you too xx
Thankyou so much for your prayers! It is 3 months now and my husband is largely out of danger..moving his hand so he can point to words, holding his head well, starting to make sounds. All these things seem so small but to us they are major! Where he will be in 3 more months i am not sure but the mental preparation for him coming home is starting to be real and scary.
My thoughts and love go out to you too xx
my continued prayers are with you. Do all you can and God will do the rest. My family and I...We are hoping for the best for my sister, and preparing for whatever may come.
...you do realise that he has every hope if you carry that hope for him? I'm a spouse of a patient in a worse situation (yes....worse if you can comprehend that :) Everyday miracles are happening...slow but despite all odds. Be strong for him. Pray (you, like me, will discover what prayer does) :)
Hello there Tim. thankyou so much for your reply. Its so hard as he knows what is happening and cries. When you read some people's stories there seems to be a tiny glimmer of hope but then when we talk to the doctors there seems to be none. I wish i could swap places with him right now but I don't think my daughter would like that....
Its not a nice place to be in is it..sorry you had to have the same experience. We actually all gathered in intensive care when it first happened and prepared to say goodbye. Still waiting...
Its not a nice place to be in is it..sorry you had to have the same experience. We actually all gathered in intensive care when it first happened and prepared to say goodbye. Still waiting...
Dear mumofonly,
I am so, so sorry about our husband's condition. I know the pain you are going through right now. My father was in the same condition, whoever his progression was a little slower. He first had a stroke, later dementia, and lastly a bacterial infection which led him to a feeding tube and oxygen, just as your husband. In my father's case there was a progress where I could prepare myself but for you to have it happen so quickly must be devastating.
All I can tell you is what happened in my case. First of all we made sure that every immediate family person was there and we were all 100% sure after talking to the doctors that there was no chance of him awaking. Each person was able to talk to our father alone as much time as we needed then agreed to let the doctors do what they suggested.
As painful that the experience was, in hindsight I am happy that I had time to make my peace with my father before he left. Many people do not have that privilege and I know that. What ever decision you make, I am sure it will be right for you. No one could ever know exactly what you are feeling right now. No matter what ever happens please don't feel any guilt about anything. Life is hard enough without extra emotions that don't need to be there.
I give you me thoughts and prayers.
God Bless,
Tim
I am so, so sorry about our husband's condition. I know the pain you are going through right now. My father was in the same condition, whoever his progression was a little slower. He first had a stroke, later dementia, and lastly a bacterial infection which led him to a feeding tube and oxygen, just as your husband. In my father's case there was a progress where I could prepare myself but for you to have it happen so quickly must be devastating.
All I can tell you is what happened in my case. First of all we made sure that every immediate family person was there and we were all 100% sure after talking to the doctors that there was no chance of him awaking. Each person was able to talk to our father alone as much time as we needed then agreed to let the doctors do what they suggested.
As painful that the experience was, in hindsight I am happy that I had time to make my peace with my father before he left. Many people do not have that privilege and I know that. What ever decision you make, I am sure it will be right for you. No one could ever know exactly what you are feeling right now. No matter what ever happens please don't feel any guilt about anything. Life is hard enough without extra emotions that don't need to be there.
I give you me thoughts and prayers.
God Bless,
Tim
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