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I'm really sorry Sherryst. Your mom must be terrified. Has she been placed on Hospice? Have her doctors given you a prognosis? Its difficult to know. Age and co-morbidities can have a lot to do with how well they might recover. Additional strokes sometimes follow. My limited experience with family members who have had strokes was that they got a lot better after awhile and did not die from their stroke but lived on to die of other causes. Your mom’s sounds really bad but this might be early days in determining her outcome. Is she still in ICU?
I would ask for palliative care and hospice now. You can, unfortunately live a long time with just fluids. At least a month, often more. It would be unusual to live longer than 15 days without fluids replaced. There is no recovery from this, so being kept comfortable and below the level of dreaming would ease your Mom's portential for any suffering. Fluids definitely will prolong things.
I’m sorry you and you’re mom are going through this. My mom also experienced a devastating stroke. When the end was near we chose to keep her minimally hydrated as her doctors told us dying with dehydration was very uncomfortable. She received no food or meds. It took 2 weeks before she passed,during which she was not communicative with is at all. It was a very sad time, and I hate for others to walk this road. I wish you both peace in the days ahead
My father died about one month after experiencing a massive stroke. His condition had initially seemed to stabilize at a bad but not catastrophic level (some paralysis, serious depression) but after about two weeks, he developed a septic infection and his condition deteriorated. By three weeks after the stroke, he was only semiconscious but conscious enough to pull out various tubes. My mom decided against insertion of a feeding tube, which might have kept him alive for years. The nursing staff members were particularly helpful in letting us know what might happen and what to expect.
Alva I read the post. I stand by what I posted. Best to speak to the doctors. I had a family member in a coma for a couple of weeks, maybe longer. I can’t remember now. He drives, lives independently today. But he was in his early 50s and had several years of therapy.
“Doctors diagnose a vegetative state only after they observe people for a period of time and on more than one occasion and do not find any evidence of awareness.”
“The vegetative state is rare. Traditionally, a vegetative state has been considered a long-lasting (chronic) disorder. That is, if a person appears to be in a vegetative state at first but recovers some mental (cognitive) function in a few weeks, that person was never in a vegetative state.”
I am very sorry you are having to cope with so much at once.
Have a talk with her neurologist about your concerns. That’s the best source at this time. You can ask where the bleed is and whether or not he/she feels her prognosis is.
Yes people do recover from CVA’s but it sounds like your mother may have had a more extensive bleed.
I understand what what you mean by vegetative state. For a point of discussion, the only way to determine this is with EEG’s done at intervals to assure the results are correct.
I'm so sorry to hear what has happened. I too would talk with your neurologist and rest of the medical team. I know that a person dying when dehydrate is horrible as they take sores in their mouth. If they tell your mum is going to be on tubes the way she didn't want to be I'd ask for pallative care.
I prersonally don't think her mum knows anything about it as shes in a "Vegetative state" This poor woman is in turmoil and just want's to respect her mums wishes. I pray she gets answers from the medical team and can do what is best for her mum.
I'm very sorry to read that your mother had a severe stroke, and that she has been left incapacitated. If you don't mind, could you be a bit more specific about what these effects have been?
Is she responsive? Can she swallow? Can she speak? What parts of her body have been affected?
Then there is the question of what, if anything, is being done to assess her and then to decide on how to treat her.
I think the key thing is that one week (or ten days by now) is not very long when it comes to stroke recovery, and your mother is not very elderly. You must respect her living will and follow her formal instructions, but depending on what exactly the stroke has done to her I wouldn't give up all hope. Are you happy with how she is being cared for?
Go with what her drs tell you. They have no reason to try to deceive you. My mother was told from the get go my stepfather would not recover and they suggested palliative care. Would have been much easy for all concerned had my mother listened to them.
If her advanced directive states no artificial hydration then the IV is against her wishes. Your doctor should ask for hospice evaluation. They can keep her clean until death comes and comfortable and supply necessities.
Did the doctors have a copy of your mother's living will? Did they tell you that she would not/could not live, otherwise? If so, I'm not sure the doctors should have inserted the tube. And once it's there it's legally more complicated to have it removed. I would consult an attorney in your mother's state of hospitalization. If this is what she wanted, not to be kept alive indefinitely by artificial means, you should feel no guilt about letting her go in peace. If hospice hasn't been in the picture they should be now. Good luck.
What was written ten years ago when a person is not facing death can radically change when the person is actually facing death. Think about that. All hospitalized patients will get an IV and fluids (unless contraindicated). There is NO PEACE with dehydration--it can take 2 to 3 weeks to die. It's a very slow cruel horrible death. Believe it or not stroke patients can get better, but one will never know without nutrition.
Death by dehydration can take two, even three weeks long. You can always put a PEG tube in her. YES it is surgery...and there are risks with surgery (any surgery), but it only takes about 10 minutes and is local anesthetic. IV fluids is only temporary fix. My mom has end stage Alzheimer's and though she had a living will 10 years ago when she was with it, she has her moments of lucidity even now. When it became impossible to get her to eat and drink adequately to the point she had kidney failure, I asked her if she wanted to go to the hospital and she nodded yes. What people say when death is not a threat can be entirely different when it faces them. With hydration her kidneys came back to life and is baseline.
NOTE your mom may even improve later..but the lack of nutrition will make her very weak and has nothing to do with the stroke.. IV fluids will not supply her with any nutrition and D5 bag only has about 150 calories per bag which is next to nothing.
If you are willing to watch your mom die of dehydration over the next two to three weeks, then call hospice in. If you decide to put a PEG feeding tube in, you can still put her on hospice AFTER the tube is put in. That's what I did. Yes they take patients with feeding tubes..but if you want one in during hospice you have to revoke it...but it is very easily reinstated without any problem after the procedure and she is discharged from the hospital.
Depends how much you can stand watching her slowly die of dehydration. You will not find this information anywhere in so-called "evidence based research" which I found to be very biased. Nobody talks about death by dehydration.
You have to decide but if it were my mom I could not stand to watch her slowly die of dehydration which is a very cruel horrible death. I do not regret putting a PEG tube in mom because God is going to take her when it is time anyway..but she is NOT going to die of dehydration. Now that she is home, I am not giving her as much tube feeding as the dietitian wanted..she's been a very light eater and I just make sure she has enough protein grams and calories match about what she normally eats in a day prior to Alzheimer's disease. ANd I crush a multivitamin (always dissolve pills completely in water prior to giving). Yes I crush them and then put them in water until they fully dissolve to not clog up the tube. I give her the equivalent of 4 cups of water a day which is like a bag of IV fluid a day. That's plenty for her. Tube feed is about 60% water. SO that's three cups of water (or fruit juice) and tube feed (about 400 ml tube feed with some protein supplement powder). That is the equivalent of what she used to eat in a day prior to getting Alzheimer's.
If you decide to go PEG tube it's very hard work to change her poo and urine by yourself. I know some people do not use PEG tubes to avoid that unpleasantness of changing their own mom. I don't mind. I'm used to it. I also use a hoyer lift so she can watch TV in the living room like she used to.
My husband's kidney's failed 3 times from dehydration. He did not have any pain. The first time I didn't know what was going on. It was only when he slurred his words I knew something was wrong. The doctor said he only had 12 to 24 hours left if I hadn't acted. I am sure some people may have pain but my husband didn't.
I faced the exact same situation with my Mother. She could still hear, and one night I asked her if she wanted me to keep fighting for her or let her go. She squeezed my hand on the "let her go." sentence. We kept her on an IV drip just long enough for everyone to say goodbye and then disconnected all the IVs and brought her home on Hospice. She died within 36 hours. It was by far the hardest thing I've ever done, but I knew that's what she wanted. She would have hated living as the way she was, unable to talk or communicate, unable to eat, and unable to walk or move around. It would just be a miserable existance for her. If she is a DNR and wished not to be kept alive by tubes, then she made her wishes clear early on. I know it's very hard, and if you're left in charge, you absolutely want to do the right thing for her.......you know your Mom and your family situation best, but I'm just sharing my experience in any hope it would help. My heart goes out to you.....
I am sorry that your mother suffered a stroke. What type of stroke did she suffer - one from a clot or a bleed? Ischemic or hemorrhagic? Is she able to swallow? A lot will depend on the answers to those questions. My own late mother suffered an ischemic stroke as one of her carotid arteries was completely blocked - her cardiologist failed to catch it. If she had a clot, was she given a "tPA" shot through an IV? (tissue plasminogen activator)? As my mother was 94 years of age, we declined that, but if the stroke was due to a blood clot, this is often asked of the loved ones - does the patient want "tPA?" I do see that she a living will with DNR in place.
With all respect to the OP, the concept of a "somewhat permanent vegetative state" is hard to grasp.
Somewhat permanent? Somewhat vegetative? Or was the OP just doing his/her best to describe general non-responsiveness or apparent lack of awareness, perhaps intermittent?
CountryMouse!! WISE observations as usual. It sounds like the OP's mom is similar to me when i was hospitalized. I was in a kinda sorta veggie state, but then I just woke up one day from a critical bleed that followed my Ischemic stroke. The expression on the doc's face was priceless. "Well hey there, you're alive" followed by a huge smile. That priceless response let me know that I almost died. I have no idea if I had been hooked up to anything, my medical records mention nothing about being hooked up, but there is a small one sentence mentioning of surgery, Who knows, I hope the OP's mom is doing okay
Sherryst, I'm so sorry that this happened to your mom. It's been about 6 days since you posted and you might have more information now. I'm a social worker in healthcare for years and have worked with literally 100s of families regarding these decisions. Here is what I know. She can live with only hydration for a long time, I've seen it up to 3 months, but usually 2-3 weeks. This means that she is starving to death: incredibly hard for both the patient and family. If a person said they didn't want "tubes", then a feeding tube would not be inserted. It is my humble OPINION, that if nutrition was to stop, then hydration should stop as well. Without hydration, she would likely pass peacefully in a few days. If she is in a comatose state, or semi-comatose state, and previously stated that she didn't want tubes and wanted DNR, then perhaps in her own way she was saying that she did not want life-support at all? Only you would know that based on conversations. Every intervention at this point is considered life support. Take guidance from the doctors and support from your family and friends, be strong, this is hard. I've made a video about making decisions about artificial nutrition and hydration, maybe some of the info will be helpful for you. Here is a link if you are interested: http://bit.ly/2MdhnNJ Feel free to private message me if I can help in any way. Best wishes.
I wish more older adults would put proper paperwork in order. All this sounds horrible for family members to try and figure out what they would want, if lucid. Sounds like emotional torture! When my mom was at rehab they did an advanced directive. I though that paperwork with her overall wishes would be put like in a portal that would be pulled up when she made er visits, ect. I was wrong. Was only for use while at that re-hab. These are hard conversations to have but it puts the family more at ease knowing the wishes are already documented and will be carried out when the time comes. I would like to get a permanent advanced directive for mom, would I do that with her primary doctor?
NOPE-->You never know if it's permanent, I had a stroke followed by a critical bleed, and they told everyone I was basically dead. During my conscious moments they kept asking if I was an organ donor, I had said no before during and after each transport,but apparently saying "NO" 4+ times isn't enough of an answer.
Watch that DNR because it equates to some medical professionals doing zero. It's a lethal acronym that will kill your mom, if you're not willing to remove it.
I had to say, "hook me up," to block that lethal DNR. I had a critical bleed following the tPa... So, my chances were almost zero. It was an adventure, but I'm alive. If I had not stated those three words "hook me up!!," I would be dead, my preferences before I had the stroke were based on being well and in hindsight, just bad information. My preference is to be alive.
Yet they were looking for excuses to stop medical care, I was getting annoyed at the letting go questions. No I didn't want to die, but they were pushing for me to "let go." WTF, I didn't care what they were trying to sell, I wasn't letting go of anything. Yet they kept trying to get me to consent to stop medical care.
I kept hearing different bull,"You don't want to be a burden onto others," "she's not going to make it" Screw that I thought, I'll be a burden. I got really annoyed at the just die, sales pitch. I don't care if I'm a burden on whomever, their convenience is not my problem.
Sorry, not sorry, but from experience, I'm glad that I'm here, I didn't want to die,
So sorry for your situation. I had similar recently, except that my mother chose no feeding tube etc before she lapsed into unconsciousness. I was spared having to make the hard choices. The neurologist heard her statement, & asked if I agreed. (I wasn't really prepared for what I was agreeing with though). If you have siblings, likely all should concur before you get blamed for anything. I realize the living will tells you to withhold tubes, but it takes a while for folks to pass anyway & my profile gives you a description of how it went for my mother. (Not good memories). God bless you & mom.
I am sorry for you situation. This is the hardest thing to be going through. But, It is too soon to give up on her.
improvements can happen up to 6 months after a stroke... the cat scan will show just how wide spread the damage is. Talk with a neurologist.
with my Mom, it was about a month before she started to be responsive, and nearly 3 months before she could swallow again. But, this level of recovery doesn’t happen all the time.
one bit of advice...seek a rehab that specializes in brain injury... the only one I know of is In Schenectady, NY...Sunnyview. Those people know what to do and how to do it. The therapy is intense. If they accept your Mom, that will be the surest sign that she can come back from this.
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APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
II. How We Are Paid.
We do not charge you any fee – we are paid by the Participating Communities. Some Participating Communities pay us a percentage of the first month's standard rate for the rent and care services you select. We invoice these fees after the senior moves in.
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APFM tours certain Participating Communities in Washington (typically more in metropolitan areas than in rural areas.) During the 12 month period prior to December 31, 2017, we toured 86.2% of Participating Communities with capacity for 20 or more residents.
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Has she been placed on Hospice? Have her doctors given you a prognosis?
Its difficult to know. Age and co-morbidities can have a lot to do with how well they might recover. Additional strokes sometimes follow.
My limited experience with family members who have had strokes was that they got a lot better after awhile and did not die from their stroke but lived on to die of other causes. Your mom’s sounds really bad but this might be early days in determining her outcome. Is she still in ICU?
I read the post. I stand by what I posted. Best to speak to the doctors. I had a family member in a coma for a couple of weeks, maybe longer. I can’t remember now. He drives, lives independently today. But he was in his early 50s and had several years of therapy.
“Doctors diagnose a vegetative state only after they observe people for a period of time and on more than one occasion and do not find any evidence of awareness.”
“The vegetative state is rare. Traditionally, a vegetative state has been considered a long-lasting (chronic) disorder. That is, if a person appears to be in a vegetative state at first but recovers some mental (cognitive) function in a few weeks, that person was never in a vegetative state.”
Have a talk with her neurologist about your concerns. That’s the best source at this time. You can ask where the bleed is and whether or not he/she feels her prognosis is.
Yes people do recover from CVA’s but it sounds like your mother may have had a more extensive bleed.
I understand what what you mean by vegetative state. For a point of discussion, the only way to determine this is with EEG’s done at intervals to assure the results are correct.
If they tell your mum is going to be on tubes the way she didn't want to be I'd ask for pallative care.
Best Wishes x
This poor woman is in turmoil and just want's to respect her mums wishes.
I pray she gets answers from the medical team and can do what is best for her mum.
God bless
X
Is she responsive?
Can she swallow?
Can she speak?
What parts of her body have been affected?
Then there is the question of what, if anything, is being done to assess her and then to decide on how to treat her.
I think the key thing is that one week (or ten days by now) is not very long when it comes to stroke recovery, and your mother is not very elderly. You must respect her living will and follow her formal instructions, but depending on what exactly the stroke has done to her I wouldn't give up all hope. Are you happy with how she is being cared for?
NOTE your mom may even improve later..but the lack of nutrition will make her very weak and has nothing to do with the stroke.. IV fluids will not supply her with any nutrition and D5 bag only has about 150 calories per bag which is next to nothing.
If you are willing to watch your mom die of dehydration over the next two to three weeks, then call hospice in. If you decide to put a PEG feeding tube in, you can still put her on hospice AFTER the tube is put in. That's what I did. Yes they take patients with feeding tubes..but if you want one in during hospice you have to revoke it...but it is very easily reinstated without any problem after the procedure and she is discharged from the hospital.
Depends how much you can stand watching her slowly die of dehydration. You will not find this information anywhere in so-called "evidence based research" which I found to be very biased. Nobody talks about death by dehydration.
You have to decide but if it were my mom I could not stand to watch her slowly die of dehydration which is a very cruel horrible death. I do not regret putting a PEG tube in mom because God is going to take her when it is time anyway..but she is NOT going to die of dehydration. Now that she is home, I am not giving her as much tube feeding as the dietitian wanted..she's been a very light eater and I just make sure she has enough protein grams and calories match about what she normally eats in a day prior to Alzheimer's disease. ANd I crush a multivitamin (always dissolve pills completely in water prior to giving). Yes I crush them and then put them in water until they fully dissolve to not clog up the tube. I give her the equivalent of 4 cups of water a day which is like a bag of IV fluid a day. That's plenty for her. Tube feed is about 60% water. SO that's three cups of water (or fruit juice) and tube feed (about 400 ml tube feed with some protein supplement powder). That is the equivalent of what she used to eat in a day prior to getting Alzheimer's.
If you decide to go PEG tube it's very hard work to change her poo and urine by yourself. I know some people do not use PEG tubes to avoid that unpleasantness of changing their own mom. I don't mind. I'm used to it. I also use a hoyer lift so she can watch TV in the living room like she used to.
Is that when people call hospice in for? Does hospice take care of these issues?
If yes, she can get well
Somewhat permanent? Somewhat vegetative? Or was the OP just doing his/her best to describe general non-responsiveness or apparent lack of awareness, perhaps intermittent?
It sounds like the OP's mom is similar to me when i was hospitalized. I was in a kinda sorta veggie state, but then I just woke up one day from a critical bleed that followed my Ischemic stroke. The expression on the doc's face was priceless. "Well hey there, you're alive" followed by a huge smile. That priceless response let me know that I almost died. I have no idea if I had been hooked up to anything, my medical records mention nothing about being hooked up, but there is a small one sentence mentioning of surgery, Who knows, I hope the OP's mom is doing okay
Feel free to private message me if I can help in any way. Best wishes.
Watch that DNR because it equates to some medical professionals doing zero. It's a lethal acronym that will kill your mom, if you're not willing to remove it.
I had to say, "hook me up," to block that lethal DNR. I had a critical bleed following the tPa... So, my chances were almost zero. It was an adventure, but I'm alive. If I had not stated those three words "hook me up!!," I would be dead, my preferences before I had the stroke were based on being well and in hindsight, just bad information. My preference is to be alive.
Yet they were looking for excuses to stop medical care, I was getting annoyed at the letting go questions. No I didn't want to die, but they were pushing for me to "let go." WTF, I didn't care what they were trying to sell, I wasn't letting go of anything. Yet they kept trying to get me to consent to stop medical care.
I kept hearing different bull,"You don't want to be a burden onto others," "she's not going to make it"
Screw that I thought, I'll be a burden. I got really annoyed at the just die, sales pitch. I don't care if I'm a burden on whomever, their convenience is not my problem.
Sorry, not sorry, but from experience, I'm glad that I'm here, I didn't want to die,
improvements can happen up to 6 months after a stroke... the cat scan will show just how wide spread the damage is. Talk with a neurologist.
with my Mom, it was about a month before she started to be responsive, and nearly 3 months before she could swallow again. But, this level of recovery doesn’t happen all the time.
one bit of advice...seek a rehab that specializes in brain injury... the only one I know of is In Schenectady, NY...Sunnyview. Those people know what to do and how to do it. The therapy is intense. If they accept your Mom, that will be the surest sign that she can come back from this.