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.
I am particularly happy about your mom being a bit more peaceful!
What a burden lifted for all of you!
One thing you might ask about before she goes home is having an OT go out to her home to evaluate it for safety. They can advise on handrails, adaptive devices and the like.
You also need to have a frank conversation with her current care team about the level of support she is going to need at home. 24/7; someone popping in once a day; or Meals on Wheels and a weekly housekeeper?
Be realistic about how much time working family members with kids can commit to this long term.
Make sure you have Plan A AND plan B.
Not trying to be Debby Downer--just trying to pass on what I've learned the hard way.
Best of luck!!
The rehab she is in automatically sends an OT out to her home before discharge to evaluate the home for things she might need. I think we will need to find out more about what options they recommend in terms of on-going care.
I'll let you all know how it goes.
To answer BarbBrooklyn - we're hoping to have her re-gain the use of her right hand which is important to her. Also hoping to have her regain more urinary control and strong enough to walk with a walker without too much worry. Right now she is walking with a walker for short distances.
If she can do all those things stronger and better, then maybe in a month we'd love to take her home. Depending on how much capabilities she regains, we'll determine how much help she will need and determine how to best get that done (hired help, or training our family to help). We have a lovely woman who also helps us around the house and she want to learn how to help too. So, it is just a matter of figuring that out.
Right now, we're just exhaling a bit and smile each time we visit knowing she is probably going to have a little more progress, will be happy to see us, and NOT upset when we leave.
What a wonderful success story, I am so happy to read about it and it will be so encouraging to others. Thank you Ms, and well done to your mother too!
You know, I had a friend who was so supportive when her Mother became seriously ill. She said she felt she'd been tossed into a hamster wheel called 'the health system'. Clinging madly on. Even when, eventually, the wheel did slow down, she was so grateful for the ride. Was glad to share the ups & downs, the happy, the sad, all of it. She is a half glass full person, like you.
Best of health for the future.
I am so happy for your mother and family. I am glad I saw your recent post. You all must feel a great deal of relief knowing your mom is doing so well. She is so fortunate to have a great family support. I hope she continues to recuperate well
What is the plan for the next step?
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 🙏🏼♥️
I can't tell you how valuable your wise and comforting words were and now with a little perspective I feel like you guys were right on the money.
FINALLY, the hospital got her meds much better. She was a little more calm during the day, definitely more lucid, and then suddenly, they wanted to release her to rehab (I think they wanted her out to be honest, but that's ok!).
We brought her to a TBI rehab - which is not as strenuous as acute rehab. It's only been a few days but she seems to be responding to a change of venue much better for a few reasons: 1) it's so much quieter and they LET HER SLEEP - this is a big deal - people aren't coming in all the time to test her BP, give her meds non-stop, etc - it's just a totally different pace. 2) They give her a shower and they dress her in her clothes, and they wheel her around to see different things - this alone makes her feel more "normal" and she is way more receptive/tolerant of other things now 3) the therapists are reinforcing the idea of progress in her mind, which is a positive message.
Don't get me wrong - the first few days she still was up and down a lot, wanting to leave, pulled out her cath, etc. But the last couple of days, she has been eating better, calmed, more rested looking, much more talkative and her eyes are open most of the time when she is talking with us (not like before).
I know it's foolish to think it will be just a linear trajectory going up - but after a good day yesterday I just wanted to share with you all. thank you again for your interest/support.
You can't live your mom's life for her.
You can and should advocate for the best possible physical and mental health treatments for her so that she has the fullest use of her faculties to make decisions for herself and in concert with your dad.
Once she is over delirium, you won't be able to care more about her recovery than she does. Abandoning your husband to take out, neglecting your job and your own health and well-being are not admirable in my book. You are worthless to everyone if you wear yourself out.
There's many a poster here who has rushed into a health crisis situation, swooped to take over care and lived to regret that choice. Just be cautious.
Thanks for your updates. Watching “the threading of the needle”, as you put it, is incredibly difficult. I hear you.
You mentioned that you will “have to step up”. Each person here is able to do only what they each are ABLE to do. We can’t compare ourselves to others. That takes up emotional space that we don’t have. Do what YOU can do. Sending out the laundry is great. Yes, take-out for a time, is, too.
Remember to try and take care of yourself, as well. The hospital commutes and visitations can sap one’s energy and one's own health.
Keep us updated, as you can.
I am definitely learning the hard lessons of how tiring the constant back and forth is. I was feeling the nagging "control" itch on days when I wasn't "on-duty" at the hospital because it's hard for me to wait for a report from my brother or dad. But I've gotten over that because on the rare days I'm not actually going there, I have to try to rest and focus on other things and just feel happy that someone else who loves mom just as much as I do is there and while we may not do everything the same, it's just fine. Today I slept for 2 hours mid-day and it felt so good!
Thanks for your good advice.
He said they were going to cut back on almost all the mood/sedatives during the day starting today.
When I went back yesterday, she was definitely more alert. I was able to get her to eat quite a bit (for her) too. That was promising. But with her alertness came her verbalizing how much she wanted to give up, etc. and she also again pulled out her catheter right before I got there.
I'm so worried that the doctors are trying to thread this impossibly tiny needle where she is lucid enough to participate in rehab, but not agitated/unhappy enough that she does not keep pulling out her catheter and trying to get out of bed to "escape the hospital". But yesterday was better than Monday's zombie like state.
My dad is on hospital visiting duty today. He's showing signs of mental exhaustion and walking slower, etc. Thank god my brother will be returning next week for 2 weeks. It's hard for him to be away from his home across the country, but I'm so grateful for his grand efforts.
Just getting by and trying to not become pessimistic.
I think it's finally sinking in that this is going to be a long long process. I need to readjust my thinking and expectations on how this is going to impact my own life. I know everything is still in flux, but still feeling overwhelmed a bit trying to manage the daily chores of life, working, caring for family, etc with all this going on. Tomorrow my dad is visiting Mom so I'll have a day off - I'm going to try to figure out what life stuff I can postpone/pawn off on DH/or just cancel for now. Feel the need to simplify. Was going to host a few big parties this summer, that is going to get canceled for now. Laundry is going to get sent out. DH will have to live on take-out for a while, and he's on board with that.
I'm in awe of the many people here, whose stories of caring for loved ones (sometimes more than one!) while working, and dealing with their own health issues at the same time, with little help. Their grace is incredible and an example of what is possible. I just need to step up.
good night all.
Bless you!
I suspect there will be future conversations with her about the quality vs. quantity of her life - but it's premature at the moment. Thanks for your thoughts.
I did have two separate uplifting conversations with both the attending psychiatrist and the social worker in charge of her case and getting her into rehab. Both of them seemed so confident they would eventually figure out the right meds/dosages for mom to help her agitation and allow her to get the best from rehab experience.
I just felt this huge weight lifted because I felt like we were approaching an impasse where perhaps, because of my mother's agitation and combativeness, we would be forfeiting her ability to get into rehab and instead have to consider much lesser options (nursing care). But both of them were compassionate in explaining this is a normal course with stroke patients - some are able to balance quickly and others, like my mom, take longer. I felt like both of them were very committed to working on this. I just felt so much better.
There are still lots of issues. BUT today felt like a win/relief - so for a change, I'm going to sign off with a smile on my face. Good night all. Tomorrow is another day.
I hope that there is a psychiatrist involved. Mom may need some time in a psychiatric facility to get her agitation under control.
I don't think that being there for hours everyday is useful.
Stroke survivors need rest. Stimulation & rehab is the next stage.
I had a friend who gave me these words to think about, what do you all think?
She said that maybe we should think about not visiting for a few days. She (correctly) said that what we have been doing, being there with her for hours a day, trying to convince her to be more cooperative so she can get released, has not been successful at changing her behavior one bit. That is really true. We go there with home cooked food, sit with her for hours and all she does is yell and struggle and be completely agitated. Then next day, same thing. I'm not sure if it's different when we're there vs. when we're not but I will ask the nurses tomorrow. Anyway, my friend said maybe we need to not go for a few days to give her a chance to be really upset and sad and maybe just come to grips with her own situation. My head can understand that (especially the - "what you're doing does not seem to be working" angle), but man, that feels like the opposite of what a good family should be doing.
My dad thinks we should visit every day, but seriously cut back on the number of hours. His thinking is that since the rehabs only allow 1 hour or so a day of visiting, if she ever gets admitted to a rehab, then it will be too drastic a change - from having us there for 8+ hours at a time and then suddenly only 1 hour. It will make her automatically hate rehab because of that. I see his thinking too, but all of it seems logical when I can't even imagine her being cooperative ANYWHERE right now.
Every day, all day - struggling there. For those who are writing about home care - besides the fact that I don't think she could be kept in bed here either... she has not been able to void her own urine and while we hope she gets that abilty back, right now she is requiring a catheter. She keeps pulling out her foley, and so they sometimes have to straight cath her or put in a foley that can stay in until she pulls it out despite their best efforts. That situation doesn't even seem possible to be dealt with at home. But that's neither here nor there because we're only considering rehab at this point, but I'm not sure how long the hospital will keep up this routine we have going on right now.
Ok, have to go to administer steam therapy to the dog - laughing to myself at the ridiculous state my life is in at the moment. Good night all and thanks for your thoughtful and kind words.
"Zyprexa is not approved for use in older adults with dementia-related psychosis."
and
"To make sure this medicine is safe for you, tell your doctor if you have ever had:
...
a stroke, including "mini-stroke""
Seroquel also has a similar warning:
"To make sure Seroquel is safe for you, tell your doctor if you have:
... a history of heart attack or stroke"
I've left out the other warnings, sticking with the ones related to a stroke.
Your mom may not have dementia, but the symptoms of a stroke can mimic them. I would question the use of these medications, given the warnings about strokes.
Both seem to be for treatment of schizophrenia or bipolar disorder. Why these?
I haven't read all of this, but seems useful - it also suggest anti-anxiety meds. It also talks of emotional changes post-stroke. Seems your mom has had a LARGE dose of that! It does say it subsides, but she may need something other than what they are giving her to calm her down. This is mainly informational, to help you cope a little better with what mom is experiencing.
https://www.stroke.org.uk/sites/default/files/Emotional%20changes%20after%20stroke.pdf
I also think it's a good idea that you are going to check with the nurses about her behavior when none of you are there. I recall that initially she seemed fine during your brother's visit, but then was agitated less than an hour later, requiring someone to sit with her. Hopefully that has subsided some and if they can monitor her when non of you are visiting, perhaps they can see how she does with/without visitors. If she's better without, then certainly limit days/hours spent with her. When you do go, bring something she especially likes, some treat or beverage, flowers, whatever might cheer her up.
It's hard for any of us to really know what to do or say. Like dementia, it probably depends a lot on what part(s) of the brain were impacted by the stroke. One would hope they have a stroke specialist in charge of her care and treatment plan.
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.
1) "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."
It is one of the nice things about this site. We can rail all we want, and know we are more or less safe. No face to face that might crumple us into tears. No platitudes. Many have been where you are. Others will come later and might benefit from your discussions and observations. At the very least, they too will know they aren't alone!
2) "...tonight I had some laughs with my boyfriend telling me funny stories from his day at work..."
This IS good for you! We all need to have laughter in our day, even in the darker moments. I was in a hospital for almost a month and was ready to walk home, IV pole and all! I harassed them so much they finally did let me go home and ordered feed bags, industrial strength antibiotics and home nurses to set up the feed bag, draw blood daily and clean my PICC line. I didn't have a stroke and was much younger, but oh how I hated being there. I was at the point of losing my humor - they sent me home just in time!
3) "My brother said he got mom to eat today by lying to her - like "if you eat this much, I think you'll get out of here faster, it's like points they track". It worked, but I'm not sure I'm comfortable doing that!"
Don't think of it as lying. On some level it really isn't a lie. The more she can do (working with OT/PT) and the better she eats, the more strength she will likely regain and feel better. Those initial days or weeks after a stroke are tough, but we have to maintain fluids and eating in order for the body to begin/continue healing. It's more encouragement than anything. Yes, we do use "fibs" with those who have dementia, but for a different reason. This is just to get her mind focused on what the goal is - to get out!
4) "Is it infantalizing her and disrespecting her to trick her? Or is it just a single-minded goal of getting her to do the things that are good for her, by any means necessary?"
Infantilizing? No. As noted above, it is encouragement. She needs nutrition and fluids to help her heal. Disrespecting? Still no. It's no different than encouraging her to do the OT/PT work, to help her recuperate as best she can. Will she ever be 100%? Probably not, but getting good nutrition, drinking fluids and working hard to regain control over her body will take encouragement from ALL of you.
I am hoping that by now perhaps her agitation has toned down some. It's going to be a hard time until she can be more self-sufficient. She's 82, but was very independent before the stroke, so it's hard on all of you. At least you have your dad and brother to rotate "turns" being with mom. If she works hard, she could regain some independence. My mother's stroke was at 97, but she already had dementia. It affected her right/dominant side too. Arm, leg, difficulty swallowing and some slurring of words. She refused to go with the EMT. They tried to get me to authorize it, but I knew what her wishes were prior to dementia. I left it that if THEY could convince her to go, fine, but no overnight. She would've been a bear!!!
They did try PT, so she could continue to feed herself (talk about independence! she was in a wheelchair, mainly out of fear of falling, prior to the stroke, but was still feeding herself and was trying left handed), and help with transfer by pivoting. She even tried to kick the nurse for calling them! That 3+ weeks in the hospital for me was hell - too far away for anyone to really visit with me. Bored to tears, not allowed to eat or drink, away from my kitties, I DETESTED being there! nearly tried to kill me with Heparin too! Sure, I needed IV antibiotics and feed, but otherwise I didn't need to be there. SO grateful to go home!!!!
Visit, encourage, hugs!
Sone Hospitals will let you stay over night.
I firmly believe that anyone in a Hospital needs an advocate.
I also believe there are many unnecessary procedures performed on patients.
You can choose which procedures you want to forgo.
You need to question each and every procedures and use your common sense that if they can't explain what it is they want to do to your mom and if it doesn't sound like something that would really benefit her than tell them you don't want it done.
While you're there you'll have plenty of time to Google lots of things about your mom's condition and procedures they want to do.
The med's they give your mom to keep her quiet to make it easier on them.
Yes she hollers, it hurts like he'll to be catherized.
And she doesn't want to be where she is.
Prayers
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.