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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
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.....
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 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.
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?
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.
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.
By proceeding, I agree that I understand the following disclosures:
I. How We Work in Washington.
Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services.
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.
III. When We Tour.
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.
IV. No Obligation or Commitment.
You have no obligation to use or to continue to use our services. Because you pay no fee to us, you will never need to ask for a refund.
V. Complaints.
Please contact our Family Feedback Line at (866) 584-7340 or ConsumerFeedback@aplaceformom.com to report any complaint. Consumers have many avenues to address a dispute with any referral service company, including the right to file a complaint with the Attorney General's office at: Consumer Protection Division, 800 5th Avenue, Ste. 2000, Seattle, 98104 or 800-551-4636.
VI. No Waiver of Your Rights.
APFM does not (and may not) require or even ask consumers seeking senior housing or care services in Washington State to sign waivers of liability for losses of personal property or injury or to sign waivers of any rights established under law.
I agree that:
A.
I authorize A Place For Mom ("APFM") to collect certain personal and contact detail information, as well as relevant health care information about me or from me about the senior family member or relative I am assisting ("Senior Living Care Information").
B.
APFM may provide information to me electronically. My electronic signature on agreements and documents has the same effect as if I signed them in ink.
C.
APFM may send all communications to me electronically via e-mail or by access to an APFM web site.
D.
If I want a paper copy, I can print a copy of the Disclosures or download the Disclosures for my records.
E.
This E-Sign Acknowledgement and Authorization applies to these Disclosures and all future Disclosures related to APFM's services, unless I revoke my authorization. You may revoke this authorization in writing at any time (except where we have already disclosed information before receiving your revocation.) This authorization will expire after one year.
F.
You consent to APFM's reaching out to you using a phone system than can auto-dial numbers (we miss rotary phones, too!), but this consent is not required to use our service.
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?
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?