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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.

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This brought tears to my eyes. I am so sorry you are both going thru this. My Mom too got to the point where she didn't want to be touched. And the indignity at times. I am lucky I was never in a hospital other than to have my girls. I dread ever having to have to go to one.
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MsResponsible,

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.
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How terrible! Current hospital rules are so difficult for us all. My Mom was admitted on Tuesday. The hospital allows only 1 visitor in 24 hours. My sisters and I are taking turns trying to be with her as much as we can, but we are all in our 70's and simply can't stay there for more than 7 or 8 hours at a time. This morning I arrived at Mom's room at 7:45 and found her near hysterical and in great fear. She thought she had been left for dead. I held her hand and spoke to her for a very long time until she could breathe easily again. At 4:00 this afternoon I simply had to leave. By then she was pretty much herself again, but I worry that tomorrow my sister may have a similar problem. There does not seem to be anything we can do. Mom is 96 and can't even use a cell phone, let alone Zoom. My sympathies. I wish I could do more than cry with you. These are tough times.
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NeedHelpWithMom May 2021
Wishing you well. It’s so hard. My brother and I were at my mom’s hospice house nearly round the clock before she died. My mom
was 95. It’s such a mixed bag of emotions when going through this situation.

Mom died at the end of April and sometimes I still can’t believe she is gone. My brother found himself driving over to see her before he realized that she was gone forever.

I will keep you in my thoughts and prayers.
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Joann29, NeedHelpWithMom, LittleOrchid - thank you, your words all made me cry like a warm tight hug. I wish I could stay overnight at the hospital with her and even yet that I know wouldn't help her much because she just wants out of this situation. But at least I would have my surroundings match my thoughts and I could assure her she's not alone and we haven't abandoned her, that would be small comfort I'm sure. I just feel like I'm doing nothing while she is metaphorically lit on fire.

My mother didn't ask me to stay all day. My brother and father (who is 83) are also doing shifts. I just feel like I have to be there as much as possible right now because it's so new and she's so agitated/helpless/desperate. I'm hoping in time she will become less so, but I'll cross that bridge when it comes.

I know so many people and families go through this. I've been reading posts by so many other people here who detail their caregiving experiences and I'm humbled, because I don't think I can do half of what they do/have done.

I just sit here in heartbreak and despair but am so grateful for this community to share.
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NeedHelpWithMom May 2021
No doubt, it is a very hard time for your whole family. We are here for you when you need to talk.

Take care, dear lady. Sending many hugs and prayers your way.
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I'm glad you are reaching out for help. The feelings to save someone you love or fix an awful situation can be totally overwhelming.

Your Mother's stroke is a situation you sadly cannot fix or have control over. As things go forward, hopefully you can advocate for her, decide on care options, help make the choices you know she would prefer.

Sometimes a hospital will have a counselling service, pastoral services Chaplin or similar. Ask the Nurse in charge if they have this service & if so, for a telephone number. Talking with someone who is trained in support can help. Someone who specifically supports people in a hospital/medical crises situation, who knows the system is even better.

Have hope over the next few days. Wait to see if the delerium & agitation reduces. Sometimes the initial bleed causes swelling & pressure, so as this reduces the effects improve. If medical details help you process what's going on, ask for specific details on this. Hospital staff are well used to patients pulling out their lines & tubes in confused states. Your Mother is surrounded by professionals, trained to deal with this. Try to eat well, sleep & rest. Add things that relax you. A warm bath, a walk, breathing exercises, maybe some mindfully meditation (try a podcast) or gentle yoga? Whatever helps gets you out of panic mode. Your strength will be needed & you don't want to wear out now. You can do this! And we, here can listen. (((Hugs)))
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MsResponsible May 2021
Tonight I just feel defeated and overwhelmed. Tomorrow my brother is staying with her all day, so I will try to find some solace - I'm doubtful though.

It's funny, all day I try to avoid calls from friends and family because I know their sympathies and sincere kind words will break my determination to stay strong for my mom and keep trying to support her and do all the administrative crap to help manage this situation. But this forum sort of lets me relax in the quiet of my own space here in the late hours when I can be alone. It helps, thanks again to you all.
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Ms, Responsible ((((hugs)))))).

Have you gotten a consult with a geriatric psychiatrist? That's who can do magic with meds, post stroke.
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MsResponsible May 2021
Thanks for the suggestion. Once we move her to a rehab, I'm going to make it a priority to find one.
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Yet, there is no fix it to this one. This is a matter of "wait and see" and it is a torment. As you can imagine there are in our country parents with ill children, seeing them in hospital suffering and confused and not understanding. What has happened to your Mom has affected her brain, and she cannot act now as she would normally because right now her brain is not functioning normally and she is afraid and desperate. You are a human being, not God or a Saint or a Fairy with a magic wand, and you are grieving and suffering as well. The person who loves the person in the bed is in very dire straits, just as the patient is, and as a Nurse my entire career that was something that was daily crystal clear.
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.
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Ms. R.,

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.
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Hi. I just wanted to introduce myself; Julie / Warwickshire /UK
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)))
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NeedHelpWithMom May 2021
Welcome to the forum!
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Ms. Responsible, I wish I have something to offer to ease your and your mother's pain and anxiety.

Having a stroke is one of my fears. It comes unexpectedly, it cripples you instantly and rips your life apart. What would I want if it happened to me? Maybe the same as your mom. I don't know. I wouldn't want to be paralyzed, unable to speak or walk or feed myself, or take care of my own hygiene. I would rather die. Perhaps, it will be legal in the future to refuse any treatment (including tube feeding) after a stroke and be allowed to die. Can one do that now? Anyone knows?
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jenny6 Jun 2021
It is also one of my big fears. Every competent adult has the right to REFUSE medical treatment NOW. Dying does not necessarily follow. Most states have a form for seriously ill people that they can fill out and have signed by a doctor; making this form a legal medical order that should be followed. Different states have different names for these forms. In California it is called a POLST. https://polst.org/ Other states call it a MOLST, MOLST, TPOPP, etc. 10 US states have medical aid in dying laws now, but the requirements (6 month or less terminal diagnosis verified by two docs among other things) are such that very few people who want to take advantage of the law can do so.
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Ms R, I hope you are getting some sleep!

So, the bad news is thst many elderly folks who have strokes develop Vascular Dementia.

My mom had a stroke at 90 ( she had been living in an Independent Living Facility for 18 months and been disgnosed with Mild Cognitive Impairment).

Once discharged from the hospital and acute rehab, we thoight things were going well....

Mom started telling us thatvthe aides were having sex in her bathroom at night. That they were carting dead bodies around at night. Stuff like that. We reported this to administration, we talked to the staff (it turned we knew some of them from High School). These stories seemed unlikely. Mom told me one day " you know you have to pay for everything hete". I explained that her rehab was covered by Medicare. She rooled her eyes. I was confused.

That afternoon, after Nurse Nancy doled out mom's pills, explaining what each one was, my mom said to me "you realize I have to manage mu own medication here?"

In shock, I asked mom what she meant. She pointed to her water pitcher and gave me a " significant" look.

I followed the nurse out of the room and asked what she thought about mom's thought process.

Nursre Nancy explained to me in the kindest way possible that we should get a consult with a geri psych; it seemed like her thinking had gone awry, post stroke.

She was diagnosed with Vascular Dementia a few weeks later.
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polarbear May 2021
That's terrible, getting dementia after a stroke. One more reason to quit while you're ahead.
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Spent the whole day yesterday with mom. She said some awful things to me yesterday (doesn't love me, etc) , but honestly - her anger is totally tolerable. I don't care if she hates me right now. It's her suffering and helplessness that is my concern. She had some real lucid moments and just kept repeating this is too much for her to bear. She wails everytime a nurse touches her. She said if I knew her at all, I'd know for sure that she would prefer to end it. I know people will say it's the stroke that's talking - but it's not.

My mother's younger brother for years was in the hospital/bedridden after he took a fall and broke his neck. He continued to have other health issues and just subsisted on the love of his wife and his Christian faith. My mother always told us, in solemn and still moments, that she would never ever want to live without being able to care for herself. She'd never want to live in a facility. My father's sister is in a memory care facility and mom also said she'd never want to live if she can't be free to go where she wants. No drama, just matter of fact.

I know it's not up to me, and I know this is something I just have to go through, with the help my father and brother and better half. But I'm just not coping well. Even in my dreams she is begging me to help her.

I wish, well, I wish for so many things. But today only, I wish for the strength to perservere to find just the next step. I am trying to focus on getting her out of the hospital to a rehab. Waiting for approval/acceptance from two places the social worker sent her casework. Small steps, even if they seem excruciating slow.

thanks for listening.
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BarbBrooklyn Jun 2021
Ms. R, it sounds like mom thinks it is within "someone's" power to "end it".

It's not. I would just keep reassuring her that she is safe, that she is where she needs to be right now and that the "fight" needs to be to get strong enough to go to rehab so that she can get BACK to life as she knew it.

If her agitation is continuing and interfering with her recovery in the hospital, consider getting that geriatric psych consult in the hospital and not waiting until rehab.

If nothing else, it will give you the feeling that you are DOING something, which, at least for me (I'm also a "fixer") was sometimes a relief.
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Oh, Ms! I hear you.

It is sooo excruciating watching our moms suffer.

Keep coming back here. You’ll always have someone to listen to you.
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MsResponsible May 2021
thank you. in my saddest moments, coming here is the only thing that actually seems to help. I think it's because I can control when I feel ready to talk about it. Whenever my DH tries to comfort me, it just cuts my knees out from under me and I can't really afford to breakdown like that. It takes too much out of me to get that upset. But being able, in a calm and quiet moment, to come here and share and inquire, it's soothing. So again, thank you all for listening.
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Focus on the next step - getting to rehab. Tell your Mom she's OK. That she's where she needs to be right now. She is SAFE. Keep the messages simple for her at this stage.

The food 'trick' of your Brother's: Label what Brother said as a *white lie*. It's the whitest of white lies. (As in reality, if she did stop eating, she could decline & need longer in hospital). I like the word *encourage* regarding meals, rather than push or bribe. No need to get involved with his way.
Say & do what YOU are comfortable with.

Sundowners: Agree the word has awful ideas attached. Try labelling as FATIGUE instead. By the end of the day, processing all that information in an unfarmiliar place with changing unfamiliar staff - we would all be fatigued. Add fear, add ?stroke/brain injury. I would call this *end of day fatigue*. That is a more accurate term IMHO at this stage.

I'm a bit of a nerd, but have found a new label can reduce my anxiety in the tough patches.
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MsResponsible May 2021
I really like that Beatty.

Re: my brother. Yeah, I'm not going to judge how someone with my mom's best interests at heart makes decisions. I'm not comfortable with it, but open to hearing I might be wrong.

Re: labels - I love that - end of day fatigue.

All very helpful advice, thank you.
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It's not "Sundowning" but hospital delirium you're likely seeing with mom. Its horrible, I saw it with both my parents and was shocked. Mom was seeing mice running on the floor at one point! Try not to put a label on anything you're seeing right now as it's likely all temporary in nature.

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
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MsResponsible Jun 2021
Holy cow - your note was like a badly needed salve for me at this moment. Thank you so very much for taking the time to write such thoughtful words. I'm indebted to you kindness.
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MsR,

I hear your pain and concern for your Mum.

It is ok to break down. Believe me, it truly is ok. We can do more harm to ourselves by holding it together and putting on a brave face. Internalized stress causes no end of health concerns an dis one of the reasons 40% of care givers die before the person they are looking after.

I sometimes envy cultures that are very expressive in their grief, most North Americans, do the stiff upper lip. I was only 21 when my Mum's best friend died, she was like and Aunt to me. I got dirty looks for crying at her funeral. Apparently crying at a funeral is not ok.

I am glad your brother did a shift at the hospital and you had a day off. Therapeutic fibs is a word that is often used in care giving. It is a way to engaging the patient in necessary behaviour, such as your brother getting Mum to eat. It is not a lie in the sense of being a Sin or to create harm for Mum.

Answer the phone when your friends call. Even if it is just to say you are not up to talking. If you ignore their calls, eventually they will stop calling all together and you will feel very alone. You can change your outgoing message to a daily update on how Mum is doing or use a site like Caring Bridge to post updates.

When Dad has his stroke 6 years ago, he was determined to make a full recovery and he did. He did every exercise asked of him, he did extra exercises in bed between physio appointments. Eventually he move to a rehab hospital where he continued to improve. Other people on his ward were not willing to do the work and they were sent home. The hospital would not send anyone to rehab who was not willing to do the work in the hospital.

Your Mum has two choices, work hard to recover to the best of her ability, or give up. You cannot make the choice for her.

But perhaps you can talk to the doctor about Hospice. Make it clear that the family supports Mum's choice to not recover and request Hospice.
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MsResponsible Jun 2021
Yes, I've witnessed exactly what you've told me about the willingness to do rehab. Luckily, my mother SEEMS to still have her knee-jerk reaction to be polite to strangers, so whenever the OT and PT come by, and ask her to do certain things, she is pretty compliant, and dare I say, mildly pleasant.

My goal today is to be the squeaky wheel and just get her out of the hospital. I'm an able-bodied 50 year old and if I had to be in the hospital for 10 days with poor sleep and people poking me, I'd be delirious too.

Once she goes to rehab and gets some sleep, I think it will be a much better to ascertain her true deficits and have more meaningful conversations. The waiting is just torturing her.

Thanks for your thoughts on the hospice. I'm not sure if she would qualify, but everyone here tells me it's too early to worry about that - so I'm going to put that on the back burner for now.

Thanks for your thoughts.
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My mother, a lifelong agoraphobic, ha a hemorrhagic stroke, left temporal, at 85.

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.
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MsResponsible Jun 2021
Thank you for sharing your story. Your mom sounds like a pistol, bless her. My mother has many wonderful qualities, but "steely determination" is not one of them.

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.
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Update: Yesterday morning the social worker told us that our preferred rehab has accepted mom. However, the last three nights she has become incredibly agitated and refuses to calm down - so they have to put a Nurse's Aide in the room all night with her for a "safety sit" so she doesn't try to get out of bed and doesn't pull out her catheter (which she has been doing). Well, the hospital told us that as long as mom requires a safety sit - no rehab will accept her.

So, we're in this holding pattern! It's intolerable. My family keeps trying to convince my mother that in order get out of the hospital, she needs to be more cooperative. She says, "I don't care" or just screams at us while she continues to try to get out of bed.

I think if I had to guess, mom's agitation/infuriation is 50% her regular personality (not an easy-going person by any measure), 25% from her stroke/blood irritating her brain, 15% hospital delirium of no sleep, poor diet, and 10% her body's reaction to the strong cocktail of medications. Of course, that's a ridiculous guess - but I'm just trying to say there is a part of my mother that is choosing to be so difficult and that's the part that is just making me nuts. I tell her - look, don't you want to go get to a better place? You're becoming your own worst enemy.

She just keeps repeating, "I just want to leave, I want to get out of here". I respond, "ok mom, where are you wanting to go - because you can't live independently yet. I don't know how to catheter you, you can't do it yourself. You can't move your dominant hand. WHERE DO YOU THINK YOU ARE GOING?". And she just keeps repeating herself, "I just want to leave".

I don't want my mother to go to some horrible facility where she will be labeled as crazy or something. I don't even know what options are there for us if no where will take her if she doesn't stay in bed at night.

Sigh - exhaustion and pessimism is creeping in.
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KristineB Jun 2021
Is there assisted living close by your home?
I called my mothers doctor and got permission to move her to a swanky assisted living facility with her own private room & ensuite.
I literally put her and her oxygen in my car, and drove her to her new “palace.” They waited in her “hand and foot.”
I had to pay extra for aides at night, for the first 2 weeks for the same reason.
She adjusted, but continued to tell everyone how awful I am for putting her there.
No thanks for getting her out of the sterile, cold, Hell, she was hating.
Being a Conservator is a thankless job.
We do it because family is suppose to take care of each other, no matter how difficult it is.
”After all, we’re just walking each other “home”. 😇💜☮️
You are a compassionate, loyal, caring daughter.
You’re doing the best you can on her behalf.
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Watching them torture themselves with hospital delirium is excruciating. The worst part is being unable to fix it. Your mom is rightfully upset at her physical state. It's normal to want to go home, but she can't and she is lashing out because she has no control. I wish I had a magic solution, but there is none. Just take it a moment at a time and know you are doing the best you can. The tears shed for imagining their fear will be many, but this is all just part of being old and sick. Hugs to you
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My dad had a stroke and went through the same thing. it was hell for him and the rest of us.

Try to get her out of the hospital as soon as possible. It is very important for stroke patients to get therapy. Instead of rehab, Dad came home and I took him to outpatient rehab. I stayed, watched and participated in the sessions.

We repeated the day’s (and the previous day’s) rehab when we got home until he couldn’t focus any more. Dad got much better. Everyone said it was miraculous. I think that replicating the therapy was the key.

Get her out of there as soon as you can. If she says, she will deteriorate.

Dad needed an antidepressant to help him cope with his lack of freedom. He couldn’t drive again, but he did regain all of his other skills.

Just keep reassuring your mom. Hug her. Love her and comfort her. All that will sustain her through this difficult time.

I know Covid complicates procedures, but I saw some horrors in the hospital when I was there with my parents.
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MSResponsable, I totally feel for you. I have lived the same guilt but then what I try to remind myself is that mom lived her life and now it’s my turn. You cannot always put her first ... not only in your actions but also in all your thoughts as it will consume you. I know it sounds a little cruel and rough but remember she would not want you to constantly be thinking and agonizing over her situation. If you have kids think of you in the future. Would you want your daughter or son to be in your shoes?? Im guessing your mom would want you to live your life. Also, I have to remind myself that when i constantly put mom first I am inadvertently putting other people second (spouse, kids, important friendships, work ...)

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.
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MsResponsible Jun 2021
I take no offense -my mother herself is a HUGE believer in quality over quantity. Problem is, her body is pretty strong right now and her mental state of being so agitated, she cannot make any decisions right now. It's like a purgatory of sorts, body willing to go on, but she doesn't want it to.
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There is a lot you can do to help. Things will get better.
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You are experiencing grief - a loss of the mother you knew - as well as the stress of dealing with the person she is now. Stages of grief are
Stage 1 - disbelief (kind of a numbness that occurs right after the loss)
Stage 2 - anger (feeling anger about the situation)
Stage 3 - bargaining (trying all types of actions that are ineffective in dealing with the loss)
Stage 4 - depression (all the sadness that this is the new "normal")
Stage 5 - acceptance (finding peace in the new situation)

May I suggest seeing a counsellor. Your sessions can be a safe place to express your emotions. Your counsellor can help you identify coping strategies to try. Many counsellors even have online video chat capabilities if your are worried about COVID. Talk to your primary care doctor and/or a pastor/faith leader at your community of faith for counsellor recommendations. Your doctor may recommend seeing a psychiatrist who can give your medications to manage your symptoms while you work with a counsellor.
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I believe all stroke patients should be put on some kind of antidepressant because of the frustration of loss of function. Adjusting from highly active and independent to vulnerable and dependent is not easy. Medical staff SHOULD have had a psychiatric consult or at least put her on some kind of antidepressant; be mindful these medications may take a week or two to kick in.

Her mental state needs to be attended to; rehab will be useless unless she cooperates so I can only advise (1) psychiatric consult and (2) antidepressant.
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MsResponsible Jun 2021
She has been seen by psych several times - and they have already tried and then replaced with another antidepressent. So far, no effect that we can tell on her ability/willingness to stay calmer.
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There is HER truth and THE truth.
For her, every poke is an invasion of who she is. She is scared, mad, also still on the right-med seesaw.
The truth is that the medical folk need to find the right meds and rehab for her, and that takes time. Of course she is mad! Suicidal threats are her best way of showing her disgust.
The truth for YOU is that you need to communicate with the medical staff about what you see in your mother's behavior and then trust them to deal with it.
You can love on your mother, but not be drawn into the drama. that's her way of bonding with you.
The truth is that your mother is NOT ready to return to 'normal' living. I say, enjoy your favorite chair. Rest up, your shift will come soon.
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Thank you everyone who wrote today - you are helping me so much. I will write more later, but didn't want to wait to send a little appreciation to the people who are bolstering my sanity!
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Does your mother have a living will which explains her medical directives? Do you understand her wishes on how she wants to live if she is not able to care for herself? Yes, this is probably just a temporary situation. Can you speak with her doctor and find out if it would be a good idea to sedate her for a short time, so that she is not so stressed about what is happening? Things may look very different for her when she is over this hump and able to start rehab. Does her doctor think that she can recover completely? Has her doctor talked to her about what she can expect in the short and longer term? Would it help to have a trusted counselor talk to her about her recovery to help her feel more positive and proactive about her prospects?
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Hang in there! I was in your shoes exactly about 16 years ago. A stroke is a frightening thing for everyone involved. Takes a while for them to find the right set of meds and a while for the meds to actually kick in (and they keep having to adjust the meds as the patient changes). My Mom was and active, still driving when she had a stroke. She was mad and scared and a difficult patient in the hospital (couldn't believe how fast she could climb over the railings on a bed). She had a living will but it gave me a lot of leeway which I took. I fought (and I mean threatened them with TV exposure) when they tried to release her to regular STR. Ironically, had just gone into the health care industry as an admissions director at a facility and I had a group of experience and well trained nurses giving me information. We all knew that, depending on the severity of the stroke and the parts of the brain damaged, stroke victims who can keep up with the exercises, have a much better chance of recovery when they have acute rehab (I think it is now referred to as "inpatient rehab") so that's what I fought for her and finally the hospital gave in. Even after 20 days of rehab, Mom had a had time walking even with assistance, needed assistance with ADLs and was pretty quiet when I took her home. the discharge nurse and CNAs told me I would not know what she had really recovered for about 4-6 months. I was blessed to find two wonderful retired CNAs who provided 24 hr care at home for about six weeks so I could work during the day. After 6 weeks we were able to drop to 8 hours of in home care. In about 4 months Mom was pretty good. Not back to her original level but good. I still paid for about 6 hours of care because I thought she enjoyed the companionship and my caregiver took her out for rides to enjoy scenic views and they liked to sing together. Mom lived with me for another 3 years before she passed..... it was then just her time to go.

So yes, it may get better but get on board with the hospital social worker now and start the fight for acute rehab. They have limited beds, it is intense and they tend to not send older patients because they may not be able to keep up. Understand that if the patient is not able to keep up, they will be dismissed (Medicare will not pay based on the PT report) and sent into a regular STR program but you won't know if you don't try it.

Wish you peace and comfort is this difficult time.
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Seroquel made my normally kind husband crazy. He hit me the only time in our marriage (41 years) after taking it for 2 days. Needless to say, I never gave it to him again.
Go ahead and break down. Lock yourself in the bathroom, jump in a warm shower and let it go. Get it out. You have to. Then you can be strong for your mom. Sending you a huge cyber hug because you absolutely deserve one for you love and dedication to your mom.
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MsResponsible: I know a lady who also had a stroke. This lady also was a consultant, a Government employee. She was due to travel solo internationally when she suffered a stroke and now she resides in an AL. I understand how tough it is, MsResponsible.
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