My 82 year old mother had a hemorrhagic stroke last week. My mother is a fiercely independent woman who until the stroke, was driving, still working one day a week as a consultant, volunteering, and living her life with grace and purpose.
Right now she is confused, highly verbal but slightly out of it, eyes stay closed but she is talking a lot. (undoubtedly from the stroke but also the meds they keep experimenting with to manage her agitation). She has slight hallucination moments, but also very lucid moments. In the lucid moments she is screaming bloody murder - about how she wants none of this. When they had to catheter her, she cried and screamed for me to help her, help her. She said this is not the life she wants to live.
I keep trying to explain to her that we're trying to help her, trying to get her into rehab so she can regain her independence. She said she just wants to die. She had the nurse call me at midnight and my mother literally begged me to take her home - they are hurting her and violating her very being. She is pulling at her tubes and they are trying to not restrain her - it's my idea of hell.
It doesn't matter that I know this is temporary and necessary. HER truth is that this is torture and she is not wanting any of it. My father and my brother and I all know that this is the very last way she would want to live. There's no solution to this, except time and trying to get her to embrace rehab, but I am not coping with this well.
I guess my problem is that I'm home right now, sitting in my lovely home, in my comfortable chair, and I don't know how to exist here without feeling sick to my stomach knowing my mother is alone, miserable, in pain, confused, scared, feeling abandoned and tortured - that is her truth - and I'm just sitting here in my house. I can't balance that and it's driving me mad. I spent 12 hours there yesterday until they kicked me out. It's a soul crushing experience trying to soothe her and watch her scream with each and every little procedure they do. Yet, going home is worse, my mind wanders and I just can't explain how lost I feel. It's worse than guilt, every second I am imagining her screaming and crying and feeling desperate.
Does this get better? How? If my mom is wishing for death/peace for years to come, do you just become numb to that?
I feel like I can't breathe my heart hurts so much being here and she's there. And I'm not feeling this way because my mother and I are super close, but because I feel so responsible for her, she's my mother! and in every way I feel like I'm failing her wishes, failing to protect her, failing come to her aid as she literally begs me for help.
I'm the person among my family and friends that people turn to for help with they're in trouble - but right now, I can't even help my own mother and I just feel lost.
So, I feel like we've been so lucky and I'm so grateful. After three weeks in the hospital after her initial stroke, she went to TBI rehab. The early days was a bit rough but still better than the hospital because it was calmer and quieter and she seemed to feel more comfortable there. After about a week, she started to gain back more lucidity and was able to sit up in a wheelchair and just be more present.
Then, we had a set back. She had a seizure. She was rushed to a hospital again and after a long long wait - they said no new bleed, most likely just the effect of the existing blood still disolving and irritating the brain. While she was at that hospital, they thought her catscan showed a little "glassy" area of her lung which they suspected was aspiration pneumonia so they kept her for 5 days for IV antibiotics. In that hospital she quickly got back to pre-seizure state and was showing signs of strengthening in her legs.
After that week, back to rehab (June 29).
It's been a month of rehab and her progress is just wonderful. She has been doing 1 hour of PT, OT and Speech/Cognitive every day. She is able to do transfers from chair to bed almost on her own, she has had her catheter removed and is working on toileting, her right arm has gained most of it's mobility, just working on her right hand still. Cognitively.. if you were to just have a normal conversation with her, it's like she's 95% all back. There are some higher reasoning/word recall problems for sure - but, I'm just so happy with her progress.
The BEST part - she is positive about her therapy. Of course she wants to go home, but she doesn't resist being in rehab right now because I think she knows it is helping her. She doesn't like the food, but she feels safe and likes most of the staff. That's a win in and of itself. We visit her almost every day, and every day she seems happy and positive with her progress. Complaints? Of course - but they are small and mostly for conversation.
If you had told me in May, even June, that this would be reality at the end of July, I wouldn't have believed you. I know we're lucky and this isn't the case with everyone. I'm so hopeful she continues to improve.
Thank you everyone for your kind thoughts and words. I hope to repay by sending some other fellow caretakers some equally kind words from my experience in the future.
May the blessing continue - Thank you for the update - and for sharing Moms great strides. Your right for saying “this is not the case for everyone” but for some it is the case and that brings hope to those in dark times. Keeping your mom and family in my prayers for continued healing 🙏🏼♥️
Lying is not "lying".....its stretching the truth to fix a horrible situation for a woman who needs help. Don't apply your rules of normalcy to an abnormal situation your mom isn't coping well with at the moment. If you have to play choo choo train to get her to eat, hey, here comes the caboose, right? 😁
Your mom had a stroke. Her whole world came crashing down around her. She's not able to think straight which is compounded by fear and agitation at being poked and prodded by nurses 24/7 in the hospital. She's lashing out and over reacting which is to be expected. She's likely also exaggerating. If she's in terrible pain, the doctor will write an order for medication to ease it.
She's got a long road ahead of her to recuperate as much as possible, or to establish a new norm. You are a natural fixer, as I am, and hate to see this situation and want an immediate remedy. That's not gonna happen. Meaning you have to back off a bit, try to reel your fear in, relax and care for YOU during this process. Don't internalize her pain or her ugly words spewed at you. She's not herself right now and not in control of her emotions due to the stroke and fear and agitation. So you need to leave when the scene gets too difficult to deal with. That's self care for the long haul.
Set up a schedule of when you'll visit and how long you'll stay. When you'll leave if X happens. How to decompress from a hard visit. What steps you'll take to unwind and sleep well.
Down the road, if mom doesn't improve or winds up to be less than she wants to be, she can decide what meds she does and does not want to take. Whether to set up a DNR or use a palliative care approach. That's for later and something she will decide. All you can do is all you can do. The rehabbing is up to HER and how hard she wants to work and how much she'll be capable of doing.
One day at a time is the best approach to take. I know how hard all of this is. My dad was diagnosed with an inoperable brain tumor in 2014 and I had to tell him there was no treatment the doctors could give him to help it about 10 months later after it grew. I cried, he cried that day in the ER, and he chose hospice care at that point. He passed away 19 days later and it was a very difficult thing to go thru. My main focus was helping him enjoy that last year of his life as much as he possibly could, and he did.
With God's help, your mom will make a full recovery from her stroke and you will be strong enough to help her without compromising your own mental health in the process. Wishing you the best of luck striking that delicate balance
Let yourself feel what you feel. Stay closely connected with MD and nurse as you are able (harder with hospitalists having taken over from family MDs). Try to reassure Mom. The most and the best improvement comes within the first two or three weeks as the swelling of the brain injury recedes. The rest of the work follows to get back what can be got back. Read up on stroke, portions of the brain affected and location important. And know that you cannot fully know the prognosis right now. There is no seer with a crystal ball to tell you outcome.
I am so sorry for the pain you are going through. There are so many who will understand right where you are, the grief, the confusion, the anxiety. I hope you will continue to keep us up to date. Start a diary so you will know who you spoke to and what they said. It will prove invaluable.
They are things that will help you to stay feeling strong & keeping life in perspective.
This happened to your Mom. There is only so much you can do. Be part of her journey now.
Being an advocate IS a good role.
But I must disagree with some recent advice regarding advocacy. Being an advocate is not living in the hospital day & night. Just wears everyone out & rarely helps. (End-of-life situations are a different situation).
Having good communication with medical team is the aim. Getting the information you need.
There will always be those googlers that think their one search is more accurate that the professional advice. By all means, check things. But avoid the Conspiracy Theorists, they know it all, right?
I know about my families strokes. So I know about THEIR strokes. I would not presume to know anything about your Mother's stroke, what you should do or how she will recover. Neither should others.
Way way too early to be any talk of getting out of hospital, home care options etc.
Just day to day. See if the delerium reduces.
Thinking of you.
It’s very clear how much you love your mom. I understand that. I truly do. I was the responsible child in my family too. I have always had deep empathy for others too, which makes it extremely hard for us to watch those we care about in distress. I loved my parents very much and it broke my heart to see them suffer.
You know in your heart that you haven’t done anything wrong. In fact, you are doing everything right, so please don’t feel any guilt. You don’t have a valid reason for feeling guilty. You didn’t cause any of this. She wants to go back to her previous life. You want that for her.
I felt the same way as you do after my father had his stroke. I wanted his independence back for him. Daddy was frustrated at first but eventually he accepted his fate with enormous grace. I wish your mom was at peace, so you could relax.
I wished everyday that my mom didn’t suffer with Parkinson’s disease. My mom longed for her misery to end. Who wouldn’t want their suffering to be over? It’s dreadful to see our parents decline. My mom recently died, my father died years ago. I miss them terribly but I am happy that their suffering is over. I think most of us value quality of life over having many years. My mom lived to be 95 but she had been ready to leave this earth many years earlier.
Your mom sounds like she is truly miserable. I am so sorry. We all process things differently. Hopefully, she will work through her emotions. Has a social worker been in to speak with her?
It may take some time for her doctor to figure out what is the correct path for treatment. She needs time to adapt to her new circumstances. This just occurred and you have not experienced witnessing your mom suffering quite like this and it’s hard for you.
The dust is going to settle. Right now it feels like mayhem. I suppose that you will have to tell yourself that things are different now. I am sorry that this is a difficult transition for all of you. Transitioning into new territory is always the toughest part.
Did your mom ask you to stay all day? Or did you feel that you needed to be there every step of the way for both of you? Be careful not to wear yourself out. You need rest too. Do you have concerns about her medical treatment? If you don’t, then accept that waiting for the next step is your reality now. I realize it’s easy to tell people not to worry. I don’t do well in a crisis either. Then I get upset with myself for not being more calm. Some people are great in a crisis and then fall apart.
You have enormous compassion for your mom. I was the same way with my parents. We owe it to ourselves to have compassion for us too. We aren’t helpful to anyone if we are stressed out. I’ve had to work on this myself. Please comfort yourself by knowing that you have done your part. Dealing with anxiety is very hard. We can’t control others anxiety, no matter how much we would like to. Your mom is dealing with a lot of anxiety right now. She is confused and fearful. I hope she starts to feel better soon. I hope you will realize your limitations in this situation so you can have peace during this stressful time.
I will keep you in my thoughts and prayers. Take care.
Again this will sound cold but at 82 if she is not in great health and wants to go maybe that is what is right for her. In today’s world we have so much medical innovation to artificially extend life. What about quality of life? Please don’t take this the wrong way just some food for thought. I do struggle with the same situation and keep asking myself the above.
How are you doing today?
A diary is a great idea to at least help keep track of things. I’m a great fan of the Google Spreadsheet. It can be accessed by all your devices, if you like that kind of thing. It’s stressful to try and remember things oneself.
I hear you on the anguish of watching one’s Mom suffer. Torture for you both.
Keep us posted as you’d like. We care.
I cried reading your dilemma. I recently experienced similar emotions to yours when my 80yr old dad went into hospital, i told his doctor his breathing hadnt been right for a while, he barely leaves his recliner chair but when he does its like he has been for a run.
anyway, my dad was sent to hospital - 24hrs later he was clearly agitated and distressed being in hospital, the staff mentioned he was getting angry being there. I cringed because my dad is an angry person by nature anyway.
i did find the hospital didnt communicate with me tho anddi be ame frustrated trying to find out what they were doing. I was told i couldnt visit for his first 7 days in hospital but i went with clean clothes, saw him briefly and it broke my heart, he said help me i thought you left me i wondered why you lrft me here, i reassured him i would seek answers and see if he can be discharged.
i didnt get far, told different things by different nurses. I had to kick off by day 7, a doctor phoned me with a full update, i asked if dad was being treated or on tubes or oxygen, when i wss told no i said i would like you to discharge him then, he is just getting more distressed being there and its 8 days now.
he did leave upon discharge, he was so grateful to me like he had been in prison.
during the days i was trying to get answers and a discharge, i cried so much at home, i kept picturing dad on the ward thinking i had abandoned him, i felt torn between hospital and dad.
i would say tho, when i got dad home, i regretted pressuring staff to discharge sooner than later, only because dad is frail and cant do much for himself and showing mental health declibe so i went from worrying about him in hospital where he didnt want to be to worrying about him back in his flat, i cried once he was home because then i worried he shouldnt be home..... i live with the anguish daily!
in your case your mum has had a stroke so im sure theres rehabilitation to go through.
i wish you all the very bedt from one troubled daughter to another (((hugs)))
As a speech therapist, I knew when I called her around 5 pm that she’d had a stroke, and DENIED it (to myself) until the next morning, when my husband (whom she adored) and I (whom she was also reasonably fond of) dragged her to the hospital.
The hospital staff was astounded that she was so healthy- her blood work was comparable to a woman aged 50, but she HAD had a severe stroke which had affected her ability to express herself clearly using spoken or written language, but cognitively intact.
I stayed with her night and day from Thursday until Saturday, when a delightful OT who was 9 months pregnant came to assess her “ADL” skills.
When they returned to mom’s room, the OT was laughing- my mother had gotten up a flight of stairs before the therapist reached the first landing. Mom told her neurologist she wanted to go home. The neurologist looked at me and said he could see no reason for her to remain hospitalized.
Home we went. I stayed with her for a week, and then she told me (insisted) that I should go home. She lived WELL in her own home, by herself with the support of her two sisters and I, until at 89 she fell and shattered a hip.
My mother REFUSED speech therapy and BY HERSELF restored enough of her communicative skill to deal with keeping her own checkbook, dealing with a laundry service, and other such necessities.
She would typically ask me to proof read her writing, but her errors were usually forgivable.
Has you mom had the various evaluations that might suggest a potential prognosis? Has her neurologist given you any encouragement that there is potential for full or semi independent functioning?
My mother really never got agitated. She was so focused on going home that I think nothing else at all occurred to her. She may have sustained less damage than your mother, or the damage may not have been in only the left temporal region of your mother’s brain, as my mother’s was.
But two days in the hospital FOR HER, were more than enough.
Hopefully, you’ll begin to get more information on her diagnostic work ups VERY SOON. I will keep you and her in my thoughts.
My mother was diagnosed with Cerebral Amyloid Angiopathy (CAA) and was on blood thinners for an Afib at the time her "main" stroke 10 days ago. They have since reversed blood thinners and stopped them. No additional bleeding detected. For those who don't know (I didn't before this happened), CAA is a disease of unknown cause where your body produces proteins that build up and weaken the arteries of your brain and can leak, which was compounded by the blood thinners.
Her MRI showed three other much smaller bleeds that had happened in the past but they can't tell when and as far as we know, we haven't noticed any cognitive issues before now. Like I said, she was still driving, reading the NYTimes cover to cover every day, and even working 1 day a week at a pretty high-level.
Right now, she vacillates between confused, hallucinating a bit, and then lucid (which comes with angry and desperate feelings). They are giving her mood drug (Seroquel sp?), but I'm almost tempted to say they are making her agitation worse. My mother, despite arthritis for years, NEVER took any pain meds, seldom drank alcohol (half a glass of champagne at New Year's, maybe a taste of wine if I asked her to try it), and never smoked. Her body is too sensitive for any strong meds like that.
I keep telling my mother (at her desperate moments) -that she HAS made improvements already. Her words and voice are so much stronger than when she first got to the hospital. We show her family photographs every day and I ask her to identify who is in the photos and where we are. Huge improvements there and I tell her that. It doesn't seem to stick in her memory for more than a few hours - but that is ok.
Besides her confusion/agitation now, her main deficits at the moment are she cannot move her (dominant) right arm and hand below the elbow at all, and she is not able to urinate on her own. The doctor's think she can regain a lot of the movement in her arm. Not sure about the bladder, they say with time it might come back. The catheter is the most hellish thing for now and perhaps the biggest inhibitor to her independent living. I know many people learn to cath themselves, but my mother will not be one of those people, the least of which problem is that her right (dominant) arm may not get to be 100%.
I'm going to sign off to go chase the case workers some more. Wish me luck.