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Where does the average lay person receive medical info? My choices are The Merck Manual, the Mayo Clinic Newsletter and maybe the PDR * * Diffucult to read.
Checking in with a physician you just get that one answer, an opinion just like any other medical opinion. I like a variety of answers to a medical question.
Even though my husband is not in the final stage of Alzheimers, he is rational enough to request that no feeding tube be given. If I thought it would improve his quality of life, I would do it. But it won't, and there is no way of improvement of memory. It is a sad experience, and not one expected years ago when we first retired. Now I am 78 years old and also have POA over two others..one in assisted living and one in the nursing home...Decisions are not easy ...marymember
Twotonne, that sounds like everyone did their best and his passing was as easy as it possibly could have been. My condolences on your loss, and be easy, easy, easy on yourself. the memory of this will be vivid for a long time to come and the whole journey will have changed you - not all in bad ways or anything, but there is still a lot a lot of grieving to go through - no surprise at all to those of us who have been through it. You will always have the knowledge you were there for him and that will always mean A LOT, even if you catch yourself second guessing about decisions and all...not that you need to; you really, really, really did well by your hubby by anyone's standards, I think!
I am back after my last post 3 days ago. My husband's doctor estimated a few weeks. Well, he passed away yesterday afternoon. His last day went rather well. He ate some thickened soup then a bedtime snack of some thickened Boost. Two hours after the Boost, he started a rapid, shallow breathing pattern with a slight temp. I gave him a nebulizer treatment to ease his breathing. He continued like this for about 15 hours and didn't accept any food and just a few trickles of water. I cleaned his mouth out, the caregiver bathed and changed him. Then his favorite granddaughter came to visit. After she hugged him, he suddenly took a fully conscience look at her and started breathing more and more quiet breathes at longer frequencies. The caregiver and I told her he was about to pass and we let her leave. He passed about 5 minutes later with one last deep breathe and then just didn't take another. Then it was over. This is how he wanted to go and he did. No pain, just a few hours labored breathing and then peace after 11 years of a slow fading away. The EMTs, the priest, the police, relatives and the funeral home all came and went. I've been mourning his passing for years now and am surprised how much emotion I've been feeling. I want to thank all of you for all the support you have given me in the last couple of years.
I've learned so much from you Dr. Kernisan, and I'll check out that article in the NEJM. Patients should know that the PEG tubes are not meant to prolong life. The feeding tube is to provide nourishment and hydration. No one should starve to death.
Re the original poster's question (How much time is left for someone in Stage 7), I would say it's quite variable and if you are trying to get a ballpark estimate of life expectancy, more information is needed. Hospice criteria vary but usually they look for weight loss, fevers, repeated hospitalizations, eating problems, or other signs that suggest a slide into the very last stage of dementia.
You may find useful information in this journal article: "The Clinical Course of Advanced Dementia" (published in NEJM in 2009). Researchers followed 323 people with advanced dementia over 18 months; a little over half died. They concluded that the 6 month mortality rate is about 25%. They also found that there was a fair amount of suffering and noted that a family's understanding of dementia affected the type of care that people got at the very end of their lives. http://www.nejm.org/doi/full/10.1056/nejmoa0902234#t=abstract
In geriatrics we generally discourage PEG tubes (percutaneous gastrostomy tubes, aka feeding tubes) for advanced dementia since they don't seem to improve quality of life or survival. But it's a personal decision and what is most important is to be well informed before you proceed.
Please, no feeding tube. It is much better if they just pass away gently. Both of my parent's died without it. I was there when my father died. One minute he was breathing, and the next moment he was gone that quick. Neither one was in pain. My husband and I both have Advanced Directives, and I have mild to medium Alzheimer's now.
That is a great article BTW, Momsgirl, and I have actually seem the videos. It makes sense. GTs and PICCs can be perfectly comfortable and helpful or they can be torturous for any given individual, and boiling it down to a cookie cutter one size fits all decision makes no sense...there really has to be a thoughtful "Convesration."
Feeding tubes of various sorts and IV hydration may be fine for some folks who have dysphagia but otherwise a quality of life and ability to particpate, with or without hope of getting better. A PICC is a peripherally inserted central catheter that goes in a proximal vein and towards the vena cava, so more concentrated things can be put in it without irritation and it does not have to be changed often like a regular IV. We even use them for kids who will need a lot of blood draws to save them being stuck all the time. If tube feeding is a long term or permanent arrangement, getting a G-button so you don't have to have a tube in your nose is usually best though I have a teenage patient with a severe muscular dystrophy who has chosen to keep an NG and does not mind it.
It can be hard to decide; the medical literature supports NOT doing tube feeds for severe end stage dementia, as neither quality NOR length of life is generally improved. This was NOT studied in the same way as stroke or ALS and would not apply to a non-dementia diagnosis; even with that there can be exceptions and it should not be a hard and fast rule. If someone has to be restrained indefinitely to keep a tube in, that is a huge reason on the NO side. If someone is hungry or thirsty, that would be a huge reason on the YES side, but a lot of times this is not the case.
A feeding tube is barbaric and, unless a patient is young enough to recover to live a normal and full life, it should be outlawed! Same goes for "visitation" when someone who has passed. I do not want my last memory of someone to be their dead body. I want to remember them as they were, the times we shared, the laughs, the good and the not so good. In Ireland they have a wake (do they still do that?) where the deceased has pride of place in the living room and the friends and relatives throw a party in his/her honour. Now that's the way to go!
Dear Maggie, My answer to Pam was well thought-out, and I did not make this comment lightly. I observed a patient, age 79 at the Wesley Woods Rehabilitation Center in Atlanta in 2006. He was on a feeding tube, and I could see that he was well-hydrated ( Ringers/or 2% Normal Saline in an IV.) I asked him gently how he was feeling, and he told me that he was "fine". I thought that perhaps the feeding tube was keeping him alive. He was not in pain, but a little uncomfortable. If Sssuuueee has already tried pureed food, spoon fed to her patient, and that method was not successful, then I really do think that a feeding tube is appropriate. I stand by my commentary.
Hi, me again, think I understand what PICC Is = Question = Is PICC mandatory, or is it up to the doctor/s ? I wouldn't want that if all I did was lie in bed waiting to die .... pete 83 yo = scary !!!
Hi, Tagging in to get similar help = hope this is OK =. Caring for 78 yo wife, doing somewhat OK, hired Care Giver 2x week = not sure how close I am to having her LBD+PD, going to care facility or hospice = each day is different! but Excelon Patch, Dopa and Zyprexa helps her, some daze she sits catatonic for 10-20 minutes = Neuro ordered tests = then snaps out of it = my new concern is what I see here = What is a PICC ? At age 83, I struggle to do my own care = meds, PT, and read Amsler Grid = hope I did not interfere in this discussion = Sorry if I intruded, pete
I agree, a feeding tube is just a way to make them live in their misery that much longer. My mom has advanced directives and I am so glad. Before she became ill she always made me promise I would never do a feeding tube with her if she were at the end. I would go ahead and try to get hospice and they will give you a paper to fill out for advanced directives, you will have to get it notarized. Good luck.
Ms. Stegman, Of all the presentations that you mentioned in your description of this patient, the most devastating is the inability to swallow. In my opinion a feeding tube would be appropriate, but you have to ask for it. If you can not manage it, then perhaps you could look into Hospice care.
P.S. The only thing that brightens my mother up a bit is Lucy's progress. Lucy is a tiny kitten I took in a few weeks ago, found in the middle of a back road desperately trying to eat a dead bird. She was in bad shape but after 2 vet visits, comfort and lots of good food she's thriving. I'll take Lucy to visit her in the next day or two.
My mother (88) has had dementia for many years which is probably associated with the parkinsons she's had for 15 years. She's in a nursing home now unable to sit up or stand, sleeps most of the time, can barely speak and eats next to nothing. Her time is drawing near. She's in no pain, just simply fading way. How long? I have no idea. She could go on for weeks or months or she could pass tomorrow. I just take it one day at a time.
CLASCski, Thank you for your concern. I had the hospice evaluation by his medical doctor so that I could find out if he was in pain from some other disease (cancer) and what to do with his weight loss. That doctor wouldn't approve hospice without a PICC line for hydration, nutrients, pain meds. The PICC line is the main reason I decided not to have hospice. He said he did the same thing with his father-no tube feedings, no PICC. I have another appointment with the neurologist this coming week and he might send hospice using different criteria. In the meantime, I'm pretty good so far.
Hopice is a God send and can make his last days and weeks a lot more comfortable than you can by yourself. They do no life saving measures, just comfort care for him and for your family. Think again, they have been a blessing to me with several family members I have had to take care of.
My husband is in the same state after 11 years of frontal-temporal dementia. A year ago he was happily eating steak, hamburgers, etc. He would watch TV and our dogs playing. He was in a wheelchair for the last two years and hasn't been able to talk for several years now, but he was content and even happy sometimes. I'm not sure what your dad is able to do or not do but expect a slow decline until he starts having trouble swallowing. You'll look back each month and realize he no longer is able to do "that" any more. The progress is much faster at the point when swallowing is difficult due to dehydration and lack of nutrition. It's at that point the POA or guardian needs to make decisions if no Advanced Directive is known. My husband has just reached that point and has gradually lost a lot of weight over a 3 month period. His swallowing is now severely impaired and we have to give him liquids with Thick It, spoonful by spoonful, dropper by dropper, because he doesn't know how to drink for the last month. At this state, the doctor said it could be just weeks. I did have the Hospice talk with his doctor last Wednesday and have decided not to have them. I have decided not to have a PICC line and let nature take its course. As long as he isn't in pain, I'm good with this decision and so are our children and his sister. God bless you and your siblings.
Stage 7: Very severe cognitive decline (Severe or late-stage Alzheimer's disease) In the final stage of this disease, individuals lose the ability to respond to their environment, to carry on a conversation and, eventually, to control movement. They may still say words or phrases.
At this stage, individuals need help with much of their daily personal care, including eating or using the toilet. They may also lose the ability to smile, to sit without support and to hold their heads up. Reflexes become abnormal. Muscles grow rigid. Swallowing impaired. Hopefully you have Advanced Directives and can avoid a feeding tube or respirator. Now is when you ask the MD if it is time for Hospice.
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.
* Diffucult to read.
Checking in with a physician you just get that one answer, an opinion just like any other medical opinion. I like a variety of answers to a medical question.
Hopefully all of our answers have helped the original poster as well.
You may find useful information in this journal article: "The Clinical Course of Advanced Dementia" (published in NEJM in 2009). Researchers followed 323 people with advanced dementia over 18 months; a little over half died. They concluded that the 6 month mortality rate is about 25%. They also found that there was a fair amount of suffering and noted that a family's understanding of dementia affected the type of care that people got at the very end of their lives.
http://www.nejm.org/doi/full/10.1056/nejmoa0902234#t=abstract
In geriatrics we generally discourage PEG tubes (percutaneous gastrostomy tubes, aka feeding tubes) for advanced dementia since they don't seem to improve quality of life or survival. But it's a personal decision and what is most important is to be well informed before you proceed.
Good luck.
It can be hard to decide; the medical literature supports NOT doing tube feeds for severe end stage dementia, as neither quality NOR length of life is generally improved. This was NOT studied in the same way as stroke or ALS and would not apply to a non-dementia diagnosis; even with that there can be exceptions and it should not be a hard and fast rule. If someone has to be restrained indefinitely to keep a tube in, that is a huge reason on the NO side. If someone is hungry or thirsty, that would be a huge reason on the YES side, but a lot of times this is not the case.
If Sssuuueee has already tried pureed food, spoon fed to her patient, and that method was not successful, then I really do think that a feeding tube is appropriate. I stand by my commentary.
Question = Is PICC mandatory, or is it up to the doctor/s ?
I wouldn't want that if all I did was lie in bed waiting to die ....
pete 83 yo = scary !!!
My husband has just reached that point and has gradually lost a lot of weight over a 3 month period. His swallowing is now severely impaired and we have to give him liquids with Thick It, spoonful by spoonful, dropper by dropper, because he doesn't know how to drink for the last month. At this state, the doctor said it could be just weeks. I did have the Hospice talk with his doctor last Wednesday and have decided not to have them. I have decided not to have a PICC line and let nature take its course. As long as he isn't in pain, I'm good with this decision and so are our children and his sister.
God bless you and your siblings.
(Severe or late-stage Alzheimer's disease)
In the final stage of this disease, individuals lose the ability to respond to their environment, to carry on a conversation and, eventually, to control movement. They may still say words or phrases.
At this stage, individuals need help with much of their daily personal care, including eating or using the toilet. They may also lose the ability to smile, to sit without support and to hold their heads up. Reflexes become abnormal. Muscles grow rigid. Swallowing impaired.
Hopefully you have Advanced Directives and can avoid a feeding tube or respirator. Now is when you ask the MD if it is time for Hospice.