Hi
My mother suffered her 3rd stroke. Now she is in bed can not move any part of her body except opening her eyes. She can breath by herself but she can not eat that is why we inserted nasogastric tube to feed her. She has been like this for more than 40 days, I feel she can hear us because one day she opened her eyes wide when I spoke a bit loud to her (actually she was like I scared her when I spoke loud). When she opens her eyes, she is not moving them left or right to follow the voice, just open them.
What is the medical term of this condition? and what do we expect next? will she be able to start eating again? talking again? moving again? she is 84 years old.
Thanks a lot.
The big question of course is, does your mom want to live like this, if there will be no improvement in her physical condition. I'm sorry that you're going through this.
Living Wills. Our ticket to ride.
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.
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 You may as a family like to discuss with her doctors whether the nasogastric tube might need to be withdrawn.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.
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.
thanks a lot for your reply, I really appreciate it
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.
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.
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.
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?
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.
Can not thank you enough for your support and encouraging words. Appreciate. Thanks.
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.
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.