What is this condition called?

Thanks Veronica91 for your help and these golden advices/instructions. Many thanks. Yes we change here positions 3 times a day. I give her food and arms massage very often (2-5 minutes/session.. 5-10 sessions/day). I will keep in my mind about LEVSIN. Thank you so much once again.

Hi Samlam

Thank you so much for your reply. So sorry for my late reply, these days writing an email has become so hard task, but I am trying. I got an email saying you sent me a message (thank you) but I see no message in my message board here!! very strange.

Anyway, I tried to see if she can sniff, but she did not reply. I think she was sleeping, I will try again. She started making strange voices, like hooo, hmmmm, nnhhhhh for few seconds.. not sure that part of her yawn or what.

These days she open her eyes (awak) during the night (from 12am to 6am) so I get up and talk to her so she wont feel lonely. Everything else is the same as before.

Thank you Samlam again for your help. Take care.

Hi Last - Sorry about the late response. And I apologize for laboring you with the blinking question. Is she able to sniff? That was another way patients with this condition have been able to communicate. I just read your post, but I didn't see a skype address. I may have overlooked it. Pls resend to message. Veronica is providing the important help you need - I am only working on finding you a skyping physician that is somewhat knowledgeable with Locked-In Syndrome. Best thoughts - Sam

Hi Samantha
As Veronica said , mother does open her eyes but not moving them left or right where the sound it. I asked her to answer me by blinking her eyes.. sometime she does not blink at all and some other keep blinking her all the time so I am not sure if she is answering me or her eyes was blinking anyway. I know she can hear me.. one day I saw she opened her eyes a bit, so I thought she is awake, I said with loud voice" "hi mom, how are you today". she scared from hearing my loud voice, she almost shocked her head and kept her eyes wide open she never open them that wide. Needless to say I felt bad I spoke that loud.

Trust me that's the worse part being unable to communicate with her beside the situation in this country as Veronica kindly mentioned that. we want to know what she wants and what she does not, what hurts and what is not, is it cold or hot for her etc. etc..

Thanks Samantha for your previous post and this one as well. Thanks for your concern and kind words I really appreciate them. I wrote you a message in your message board/page not sure if you saw it or not. I wrote my Skype address too. let me know please if you can see my message or not.

Thanks once again.

Samantha he said previously when she does open her eyes she just stares straight ahead so it sounds as though there is no communication that way. He seems to be doing the very best he can under horrible circumstances

Lastnn - Are you able to communicate with your mom using 'eye blinks' as EaseLiving suggested? (ie) 1 blink for 'yes' 2 blinks for 'no'? Sorry if I missed this in your previous communications.

Lastynn you have clearly decided to continue to care for your mother so given that decision is out of the way. The nourishment you are giving sounds very appropriate. As long as you do not withdraw more than you are going to feed her she is processing the feeds. If not she may vomit. If that happens it is a sign that her digestive system is shutting down and the end is close. You can just let the stomach contents drain out of the tube into a collection bag if available or just into a bowl. it may be clear , brown, green or really fowl smelling. the next dangers will be a urinary tract infection or pneumonia. Either can be treated with antibiotics if you can obtain them. The urine will be cloudy and smelling like dead fish. If her breathing has a kind of crackling sound to it she probably has pneumonia. as far as pain is concerned, that is difficult to judge but a couple if indications can be screwing up her face or maoning. If she moans regularily with each breath it is not usually pain but if she does it when touched or moved.
Are you cahnging her position regularily to avoid pressure sores. i think you said previously you are . I can't go back on check that post because the current one tends to be erased if I do that. It is quite likely she will have another major stroke and pass away from that. If her lungs seem to fill with fluid which often happen right before death, just place her on her side with towels under her face. There are medications that will dry up these secretions but I doubt available to you. The one I have in mind is LEVSIN. it is usually prescribed for bladder spasms but the side effect is to dry up the lungs (In case other posters question this recommendation). Keep up with the Tylenol every six hours. i can not think of anything else I can tell you to do. You are being forced to live under such horrible conditions. We see the news but the horror of daily life is unimaginable. you are taking the very best care you can of your mother. I do not know what people here would do if faced with the same challenges so you have my utmost respect.

Thanks SamanthaW for your reply, I really appreciate it your offer for help. I admire you too for your decision to be your mother caregiver. About Comfort Care meds, I will go tomorrow and ask for them. Here drugs are counterfeits and many people complained about the effectiveness of the meds in Iraq. I personally think they are not origin but anyway I will let you know what is available here.
Can not thank you enough for your support and encouraging words. Appreciate. Thanks.

Thanks a lot Veronica for your help and thoughts. I really appreciate that very much. I am going to answer your questions now: No I am not keeping her for my own reasons. I am caring for her because I believe that is my duty as her son. I do not know what she wants now. We did not talk about this before. I really can not make this kind of decision nor my sister. I quitted my job to take care for her. I do not know what to expect but I can not stop not caring for her,.

Yes she urinates and passes feces. You said "Each time before you give her food can you attach the syringe and withdraw to see if there is still fluid in her stomach".. Ok I will do that, but what does it mean if I found there is a fluid or not? I am reading your reply again and I think somehow something was cut after that statement, am I right?

About her pain, I really can not say if she is in pain or not but clearly she is. My sister told me she dreamt that mother told her she is in pain and need some pain killer. I do not believe in dreams etc but anyway after consulting with a local doctor here, we started to give her Tylenol arthritis pill every day. I crush them and mix them with water and give it to her via the tube.

I am not sure if morphine is available here or not but even if it is available here most of medicine are counterfeit drugs. but what morphine does?

About not opening here mouth: after the 3 stroke she was opening her mouth wide open and the tongue was going out sometime but then all the sudden she started to close it. We have been told by local doctor here that is uncontrolled muscles behavior. so I do not know if mother want to tell us something or not by closing here. But earlier "EaseLiving" replied here and said my mom's condition is "locked in syndrome" where the patient can only blink eyes, so based on that I would think mother has not control over her mouth, I might be wrong.

PS: I just tried to feed her 50cc liquid soup via syringe. I tried to withdraw as you asked me to do, some liquid came back! so I used new syringe to feed her the new 50cc. should I have stopped feeding her when he stomach has liquid?

let me tell you what I do to feed her everyday
1) 6am-7am: make cocktail juice apple/banana/carrot and mix it with Ensure milk from Abbot then I give her the first 50cc
2) at 8:30-9:00am - gave her another 50cc from same cocktail above and then after that her Aspirin pill after mixing it with water 20-30cc
3) at 11-11:30: fresh orange juice with very little sugar50cc, then after that give her calcium pill (crush it and mix it with water 20-30cc)
4) around 12:30-1pm: 50cc of soup (mix of vegetable boiled with fat free piece of meat) - extract the soup into water only
5) around 3-4pm: 50cc of her cocktail juice mixed with Ensure milk then her Tylenol arthritics pill
6) around 7-8pm 50cc of her morning cocktail juice or new one
7) around 9-9:30- 50cc of her cocktail juice + her cholesterol pill

in the past 3-4 days I started give her 30-50cc of soup/juice etc. during the night (from 12am - 5am) because I think she needs more nutrition.

Thank you once again for your reply and help Veronica.

Lastnn - You are a wonderful son & I truly admire your courage. You have had to undergo challenges that most of us in the US can't fully grasp. Unfortunately, there will be more. Do you have the ability to Skype? I may (not promising anything) be able to find a physician here that can contact you with instruction and counsel.

Veronica - Given your experience and Lastnn's lack of access. You may be his best ally.

Lastnn - Pls take heed to Veronica. While you are struggling with your life decision; do you have access to what we call "Comfort Care" meds like Morphine, Lorazepam, Dilaudid?

The question to ask yourselves is would she wish to go on living in this state? Are you keeping her alive for your own reasons knowing there is no hope of recovery.
Is she digesting the nourishment you are giving? Does she urinate and pass feces? Each time before you give her food can you attach the syringe and withdraw to see if there is still fluid in her stomach. If she is in any pain there is a liquid form of morphine that is given with a very small syringe without a needle in the mouth. You just slip it between her lips and very slowly just push it between her gum and cheek. It will be absorbed right there. Other medications can be given rectally. You are really on your own managing the very best you can. Do you think she may be trying to tell you something by not opening her mouth for you? Do you think she would rather not be fed anymore? Dehydration is not painful or distressing. Many people think endorphins are released and promote a sense of calmness in the dying. You and your family have to make the difficult decision about what to do from here on in but consider what your mother would want and what the kindest thing is for your family to do. Whatever you do it will be heartbreaking. Our good thoughts go with you, we will help from afar even if is only over the internet.

Thanks Countrymouse, keeping my mother comfortable and clean is the easiest part of this because we can do it not like nesting tube which required medical training. my sister clean her well, I feed her and both massage and flip her so she wont bed soar. inject 50cc of hum made juice and soup, Ensure milk, and water every hour from 7am to 9pm and now I start inject her juice 50cc during the night to keep hydrating her.

really loved the idea of asking local hospital to me but I doubt if they accept that but what I know and I am sad to say this they themselves need good training , we have had very bad experience when we admitted my mother the first time she had stroke. they thought she had heart attack !
medical system here is very bad and I can not even camper it to north American one.

Thank so so much again for all your help and amazing advices.

Oh my goodness, that must have been an ordeal for all of you. I can't imagine what it must be like trying to find medical and nursing help at home.

I have no idea if these drugs would be obtainable, but my mother was provided with three types for use in case of need (I am very happy to say that she never did need them): an anxiolytic, in case she became frightened or distressed; a mucolytic, in case her throat became obstructed; and injectable morphine in case of severe pain. All of these required a qualified nurse to administer them, so you would also need either to find someone who would be amenable to coming to your home promptly, as soon as he or she was needed; or perhaps to ask your nearest hospital if they would be able to train a family member in their use - given the difficulties, they might be prepared to consider that.

How are you managing your mother's overall wellbeing? Are you able to keep her comfortable and clean? This site also has very good practical sections on managing problems such as pressure sores if you would like advice on that kind of thing.

ArmyRetired thanks for your reply. It is really hard to know what is in her mind. she is a fighter. we are not religious people but taking a decision like that is not easy no matter what if you are religious or not. so I will keep caring for her.
thanks a lot for your reply, I really appreciate it

Thanks Countrymouse for your reply. Wow I have found it is difficult to write back but I am trying. About the nasogastric tube, believe me it was so hard to find someone to help to insert it. Only one nurse in this city can do it that and he wont accept to come home. Anyway, he did and was so hard to insert. we do not know why, because he is not good or because there is something in my mother body that makes it hard but finally he did it after 3 hours and mother who does not speak and paralyzed you can see the pain in her face so easily!! I thought she wont make it. Now having said that it would be so risky to take the tube out. This has been my main worry, what if something happened to the tube. so overwhelming even thinking of it.

My mother closed her mouth when we try to enter something (for example when we try to clean it wit wet but dry gauze pads) . we tried to insert small spoon in her mouth to see if she is going to swallow but she seems to move her jaws like chewing something but she is not swallowing.. we put few water drops and she start coughing then we stopped and used the sucker to take water/saliva from her mouth.

not sure what else we can do here.
once again thanks for your kind reply. I really appreciate it.

If it is not against the law in your country or against your religious beliefs, would it not be better to let your mother pass away? Would she truelly want to live the way she is living now?

Lastnn, I hope this is more comforting than harrowing, though I wish there were something more hopeful to say: if your mother has already suffered three strokes, and is so completely immobile, it is very probable that there will be more to come and her chances of surviving them are slight. In view of her current quality of life, perhaps this would be a kindness. My own mother passed away recently having suffered a major stroke in December, and I can reassure you that what happened in the last two weeks of her life is that she seemed to be unconscious for increasing periods of time, during which she ceased to breathe, until at last her heart stopped. She died very peacefully and gently.

If possible, make sure that your mother is not left alone so that if she seems to need anything it can be offered to her straight away. Other than that, I am sorry to say that there is probably very little you can do besides what you are already doing - keep her comfortable and wait.

There is one other, very difficult point. You may as a family like to discuss with her doctors whether the nasogastric tube might need to be withdrawn. I believe it might be possible to withdraw it and review your mother's swallowing reflex to see if there has been any improvement; you would then need to consider carefully what to do next. This is not only a matter of not burdening your mother with excessively invasive, albeit palliative, treatment. In a home environment, the risk of infection must be quite high and eventually the tube will not be able to be left in situ - but if you wait until there is an infection, that could be very uncomfortable indeed. Your doctors are clearly doing their best in difficult circumstances, so in your position I would ask them what developments they expect in your mother's condition and take their advice. My best wishes to you.

Thanks kgaither for your reply. I really appreciate it. We do not have hospice here so we have my mom in our home. We are feeding her through nasogastric tube. I feed her Ensure milk and juices/soup after extracting the liquid only from them. Doctors advised us to give her Castrol, Aspiring 75mg, Calcium, and multivitamin/iron pills daily. We have been doing that for more than 40 days now. She lost a bit of weight. We are trying to make her feel comfortable and feed her as she needs but we do not let her pass. We do not want to do that by ourself. We try to do out best till her time.

My mom was 92 when this happened, and I had to make the decision to let her go. Because she could not swallow anymore and they told me the only other thing was to put a feeding tube in. Because my mom had been able to live on her own, have a garden, etc. right before her major stroke, everyone in my family (including her brother who I adore and I wanted his thoughts and opinions on what decisions I should make) said she would not want to be like this. So they put her on morphine and anti-anxiety meds and we let her pass. It was the hardest decision I've ever made in my life, and I know I will always question it no matter what. But hospice helped me and my family was there too. Hospice is everywhere and they are paid in full by medicare. Please as your local city or even her doctor. The doctor helped to set up everything for my mom.
I wish you the best and know that many of us have gone through what you are right now. I know that might not help, but the hospice staff will have experienced this many, many times.

My heart goes out to you. I wished I could tell you something to help, but sounds like there is not much help in Iraq. Spend as much time with her and try to keep her comfortable. I do think that she hears you. I will say prayers for your mom. I just lost my mom and she was not old. I'm so sorry😢🙏😇

Thanks pamstegma for your reply, I appreciate it. Ok if I did all of that, how that would change her condition. I told family that my family might not recover again so we are prepare for that. It is day by day situation and we are doing our best to take care of her. What else am I suppose to do? Thank you.

Thanks Windyridge for your reply. No I do not want her to live like that but what I can do? No we do not have hospice here.

Lastnn30, the family needs to sit down and plan for her passing. Read her favorite prayers, play her favorite music, comfort each other. Make the final arrangements together. If she had a favorite Imam, ask him to come.

I'm hesitant to say this, but please ask yourself , would you want to continue living like this? Most people would not. Is it time to let her go? If hospice is available in Iraq she needs to be put into care now.

Anyone can tell me please how much liquid should I give her everyday ? I am using nasogastric tube to feed her. I am giving her now between 600cc to 1000cc of liquid (water, juice, soup etc) all in liquid form. Thank you.

oh my god EaseLiving, yes I think my mother is in locked in syndrome. she sometime open her mouth "yawn" but that is all. when I try to clean her mouth she closes it so hard and I wont be able to open it. I guess all these are not controlled activities. I will read about this syndrome more. thank you so so much.

thanks MaggieMarshall for your answer. my mother at home not in a hospital. we do not have good health care system here in Iraq and no one care to take care of 84 years old. very sad .. and doctors are not well trained here.

If she is able to understand but not communicate it is called "locked in syndrome". Therapists have had success teaching people with locked in to communicate with eye movements.

Please have a frank discussion with mom's doctor. Right now, I personally believe your mom is living a nightmare. I am profoundly sorry.

Living Wills. Our ticket to ride.