My wife suffered an intracerebral hemorrhage five weeks ago. She is in excellent health with not a one underlying medical condition. We're both 69 years of age. We are both extremely active and not more than maybe 5 pounds heavier than we'd like. We hike, bike, x country ski, walk three miles every day, eat healthy and do all the right things, and then bam - our world is turned upside down.
She was in the hospital about ten days when it was determined that my wife had little chance given the severity of the damage done to her brain. She was placed in hospice for four days until we realized that her cognitive ability had greatly increased. I asked her if she wanted to live or wanted to die. She wanted to live, so we took her off hospice and rushed her to the ER for rehydration and nutrition. She remained in the hospital for about three more days and released into a rehab facility. Since placing her there, she has increasingly begun to first not wanting to have anything to do with me and turning her head away from me. There was a sort of disgust look on her face and a putting off type of look as well. Over the next few days, the disgust look turned into sheer terror today which is five weeks since she suffered the hemorrhage. She's getting PT, OT, and speech therapy but I don't think there's been any evaluation neurologically or psychiatricly. We've been married 48 years in March and are still madly in love, or we were. What could be causing this? Is she thinking that I put her in a nursing home which is the last place on Earth she ever wanted to be, or is a bad memory continuing to control her or what? I'm thinking the rehab place is thinking I've been beating her or something like that.
Your wife will have different issues based on the areas of her brain that were damaged.
Initially, patients with brain damage have a lot of pressure inside their heads that put pressure on the brain. Think of it like spraining your ankle and getting a lot of swelling from the injury. Now, imagine that "sprain" is inside a box and the swelling pushes on the brain because it has no other place to go.
As your wife's brain injury recovers she will have less of that swelling and pressure that decreases healthy brain function, Good news! She gets back some of the things she was able to do. Bad news! There will be areas of the brain that remain permanently damaged.
Rehab works with brain-injury clients to help them adapt with whatever deficits remain from the permanently injured brain. PT, OT, and speech work mostly on muscles that were affected. Sometimes her thought processes are permanently effected. Sometimes her "feelings" are permanently affected.
Talk to her neurologist to get a good idea of which areas of your wife's brain are permanently damaged and what changes to expect to be permanent.
We’re 3+ months in. The road is long. Both neurosurgeons I spoke to said that it would take 6-18 months, but that in all likelihood, he would ‘come back’. He may never be 100% again, but it is possible. They said the blood caused massive bruising on his brain, and like a bruise on other parts of your body, it takes time to heal. However, the brain takes a lot longer to heal.
My father is still in the hospital. He suffers from aphasia, and sundowns badly, getting angry and sometimes violent. His moods ride on waves, sometimes unpredictably. Sometimes he’s almost lucid. Other times, he’s crying uncontrollably. Others, he believes he’s being held hostage and gets mean and angry when we don’t help him escape. Other times, he hallucinates, or becomes obsessed with strange things, like the hem of a blanket. Before the stroke, he was there 100% mentally, active, and walking every day. Now, he’s senile.
I feel as though I’ve been robbed. Someone stole my dad from me. The shell of a person left isn’t my dad - he just looks like him. I hope and prey he comes back, and my mom and I are doing everything we can think of to make that happen, because this…is torture. For all of us.
The best advice I can tell you is the advice I give myself: be patient, as hard at it is. Take everything one day at a time, one step at a time. I know it’s so disheartening taking one step forward, one step back. Most days it feels like you’re never getting anywhere, but the healing is happening.
Play music, tell her stories, give her space (don’t try to touch her). Show her pictures, and smile gently.
I’m sorry you’re going through this, too. I wouldn’t wish it on my worst enemy.
I see you and I know the journey you and your family are on. I know how hard it is to watch a loved one in stroke recovery - I’m not sure I could ever fully explain it to someone unless they have been on it.
Just Keep going -I know that it is mentally - emotionally and physically exhausting - I hope you and your family are surrounded by a good team of family, friends and doctors - it sure does need a village.
I just want you to know that you are not alone - I know what the days and hours look like - it took my mom a lot longer than most to really start healing and though she will always have deficits - the brain can continue to heal for years. Keeping your dad and family in my prayers. 🦋
What area of town are you in?
All I can say is keep going.
Keep your strength up : eat well, sleep & keep exercising. Exercise especially can keep your mind from being overwhelmed.
Keep your mental supports up - call friends, chat online, talk to neighbours.
Keep being informed of your wife's condition. All the updates from Dr, Neuro, PT, OT, other etc. Is there a Psychologist in the mix?
When my Mother had her stroke (ischemic) I noticed behaviour changes about week 3. I was never able to find out the cause (?? 2nd stroke, smaller strokes, depression or mental adjustment/grief). This was NOT noticed by medical staff as they did It know her personality prior.
In time, with much rehab, she returned to her home - with my Dad taking on the heavy toll of 24/7 carer, as he chose to do. He, as did many spouses, did a 'trial of care' in rehab. It was not done as a pass or fail - it was a step towards adapting to the 'new normal'.
You may have many weeks before the opportunity is right for that but I mention that as a potential path.
Until then, I would suggest considering a Psychologist be added to your wife's team. the turning away from you could be depression? I think of deep depression after trauma as a holding still phase - to allow the body & brain to catchup with reality. Some may rise to their normal mood in time themselves, some really benefit from councelling, some from medication + councelling.
Acquired brain injury is a scary term but hopefully there is much improvement to come.
A cerebral hemorrhage causes brain damage. IF they survive, people with this kind of stroke (as opposed to one caused by a blood clot) may improve somewhat, as your wife seems to have. But they generally do not regain all the abilities, including accurate perception, they used to have. She would certainly have had a neurological exam at the hospital, but not a psych evaluation yet as she cannot communicate enough verbally. Try to have a visit with the doctor who saw her in the hospital so he can explain (or talk to any neurologist).
The doctor and nurses at the nursing home understand the damaged brain and almost certainly do NOT think you have been beating her! Do not worry about that. Also do not take her disapproving looks personally. They are probably not related to anything you have done. Continue to visit with her, not long exhaustive visits, but try to comfort her and explain to her where she is and why. Don't fret if she doesn't seem to understand. It may be too difficult for her to comprehend now.
I wish you the best. It's a very difficult situation. Can be exhausting. Take care of yourself health-wise, and get as much support as you can from others.
I read your other post too. Your wife has had a traumatic brain injury that you must accept, as hard as it is to do. You must also accept that she is now terrified of you due to the fact that her brain isn't working properly. She may no longer recognize the fact that you're her husband of 48 years and that she loves you. To her right now, you may be a stranger.
To you, home is the best place for her and where she belongs. To her, she'd be going to a strange place with a stranger she's terrified of, against her will. Try to see things from HER point of view.
When you took her off hospice and sent her to the ER for care after she said she wanted to live, you agreed to do whatever it took to get your wife back to some baseline of normalcy, or, whatever her new normal would turn out to look like. That remains to be seen, yet. You have to let the medical professionals work with her to GET her there. You have to give it lots of time and take their advice. You can't be forcing YOUR way on your wife because you think it's best......you don't have the medical training to KNOW what's best! You're looking at this situation purely from an emotional perspective: you love your wife, you want to scoop her up and take her home where she will be cared for 24/7 in the best possible way, period. Except for one thing: she's terrified of you. So for her, it will feel like she's being kidnapped and dragged away some place. You don't want that.
Work WITH the doctors to get her back to a functional baseline. Reenter her life as a friend, a little at a time, and earn her trust again and eventually her love. Once she starts smiling when she sees you, you'll know shes in a better place.
This is a terrible thing for BOTH of you, mrbill, and my heart hurts for what you're going thru. I wish you patience and understanding in spades to travel the long road ahead of you. Wishing you and your dear wife Godspeed to endure it.
My mom suffered a massive stroke in 2019. She couldn’t talk or even open her eyes for months - she went to an acute care hospital after the ICU and then rehab.
We can never know what they are going through as the brain is healing but I can tell you - it can heal and just takes time. What I know is that no stroke is the same. Is she talking yet? As she may be having one of the many speech/cognitive issues - some people don’t recognize family - some don’t understand language - aphasia - apraxia etc etc I would suggest talking to her speech therapist about your concerns so they can check and address them if she is experiencing any of them.
I think it would help if you knew if she has any speech and communication deficits and what they are first - when my mom couldn’t respond I did get her to use thumbs up and thumbs down - I tried to get her to write (she couldn’t for quite some time) - her speech brought in poster boards so mom could point at pictures - etc. So is she able to speak yet? Do you feel she doesn’t recognize you? Etc etc
If you can give a little more info - I can tell you what worked and helped my mom.
Ps - my mom talks - does crosswords - chats on the phone - reads etc it just took a lot of healing and time. My mom will always have some deficits but she did regain a lot. Her short term is still being strengthened and she has 100% of her long term memory. Just don’t panic - keep the faith.
I may ask her if she is mad at you. If she responds yes, then say your sorry. That you didn't realize that her being there would upset her so much. That she needs to show progress and do as much as she can. That the staff thinks she fears you. Which is working against getting her home.
If this is due to your wife's brain injury of not is of little importance. If she is afraid, then she is afraid, and cannot be put into the care of someone she truly fears.
If this is due to your wife's brain injury I cannot imagine how very disturbing this must be to you. I just read about a well-known author who now understands that the man she accused of rape and got incarcerated for 19 years is innocent of her rape; I cannot imagine losing life and liberty for 19 years because the wrong woman passed me in the street and accused me of rape, then being convicted, and losing two decades of my life to the prison system. You state you had a joy-filled marriage; this must be a dreadful shock. Seek the help of neuro-psyc, try to have patience, and allow your wife to go to in facility care until things change.
More of the situation
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