I could not agree with you more.  Let them go...

 If there is an afterlife or a heaven, they will be free of dementia, free of confusion, fear, anxiety, etc. and will once again be who they were meant to be before their brains were rotted by this horrid disease.  Don't make them wait for that.

 If there is no afterlife, their suffering will end with their lives.  Don't make them wait for that. 

I agree with you fully, elganpat, about meds for comfort only.  My mom, who had Parkinson's w/associated dementia, passed August 2013 in a Hospice.  She went peacefully; for which, I am grateful.  My father, diagnosed in April 2012, is now in what I consider the later stages of Alzheimer's.  He has made a nosedive into the pit of this disease since the first of the year.  It's as if everyday brings something more bizarre with it.  This morning, he tried to hit my [grown] son, and then came at me as if trying to put my eyes out.  I promptly delivered an SOS letter to our doctor asking him to write an Order admitting dad to hospice.  I can't get him placed quick enough to go through hospitalization and then a placement in a facility; which, we tried three weeks ago…unsuccessfully, may I add.

Cyann

Count me in that too.   I have already signed a DNR and I have the medical DPOA for the rest.  In my state, they do not use POLST, but two separate lawyers have told me that the medical DPOA will cover whatever I wish on her behalf at the time if necessity.  So, no tubes, no pain, no extraordinary measures to keep her in thus place of misery.   But I WILL be with her when the time comes.     

jtymer

That is my approach as well.  I cannot see any point to prolonging this suffering at all.

Edda

Thank you.  I had to let my mother go by refusing a feeding tube.  It is such a hard decision. Her doctors told me she would not do well with a feeding tube. I did feel guilty and still do, but thank you for your words.

Peace, Veronica

Elgan pat,

Thank  you.  I just I had been more prepared for this final decision.  I'm glad you brought up this subject.  It is a difficult one, but one caregivers should think about ahead of time.  Peace, Veronica

My brother and I overturned the POLST form less than 3 weeks before my mother died (she passed away 3 and a half weeks ago).  My father (who has Alz) had her on 'save at all costs' and could not be convinced otherwise, even though she had a health directive saying she would want comfort care in the situation she was in (massive stroke in late 2006, bedridden, unable to feed herself, in diapers all 7 years, losing the ability to recognize us).

I recognized that she was going seriously downhill in mid February.

We had to get two doctor's notes declaring my dad incapable of making decisions for her. This was possible because of his Alzheimer's diagnosis in August.  He never found out we took this action.

My mother nearly died of an infection in 2011 and it was my father's insistence that pulled her through then.  At that point there was nothing we could do, as he had no diagnosis and had complete control over her care.  After that episode she had even worse quality of life than before, and over 2 years more to suffer. 

I hope every caregiver gives this question careful thought.  I also think all people should think carefully about who they give power to make their health decisions. My mother made a huge mistake in choosing my father. He has consistently had problems dealing with death his entire life.  ANY of us children would have been a better choice to carry out her actual wishes.  But, the spouse is the 'usual' choice. Not always the best choice, though.

It is over now, and I think if we hadn't done what we did in changing that POLST to comfort care only, Do Not Hospitalize, my mother would have ended up in the hospital ICU hooked to machines.  I think what we did made a difference. I think of it as my final gift to my mother.

Total agreement  Mom is stage 7 and refusing food.  Drinking less and less ensure, which now needs to be honey consistency.  She doesn't know us and has begun to fall into very deep sleep more often.  She is on hospice.  I wouldn't allow a feeding tube.

You thought this would be an unpopular topic.  Anyone who has seen there loved one deteriorate can empathize with this.  We all get it.

Stephanie L., "Heaven is for Real" is an amazing book. I can't wait to see the movie!

For someone who is end stage, I've heard that hydration is uncomfortable.  Their bodies are shutting down, so they have no way to get rid of the excess fluid.

My mother stopped eating and drinking several days before she died, and so she probably passed from dehydration.  I've heard that is one of the 'better ways' to die.  

Many cultures regard the cessation of eating and drinking to be a SIGN of dying rather than a CAUSE of dying.  I agree with this.

Antibiotics are not indicated in comfort care as far as I know.  Pain from an infection  is controlled with pain meds.  It is acknowledged that the person is dying and that antibiotics would only prolong the dying process.  They used to call pneumonia 'old man's friend' as it provides a peaceful passing.

Just as every person with dementia is different; every caregiver is just as different.  Some are better informed, others are more emotionally stable and some are more able to see matters clearly and are able let go.  Others are not in that space and then they need to be supported and hopefully to be guided to a better state of mind to enable them to make a decision that is far kinder for their Loved One.

As an RN who was Administrator of Patient Case Management, whenever a family or family member came into our Medical Center with a moribund Loved One and had them on slate for feeding tubes, or for ventilator support; etc., I immediately contacted our Social Service Department and had a highly educated and skilled Social Worker assigned to the family who followed them throughout their LOs stay.  We also worked with the patient's physician(s).

The Social Worker would initially just make contact and speak to family about their Loved One and just be there to listen and support.  Usually this opened a discussion MUCH sooner about not taking or even discontinuing heroic measures in a patient who was actually in the process of dying.

Respect for the family was foremost and no one was ever treated as though they were doing something wrong.

As appropriate, we also had very fine Hospice RNs who would come in prior to having the patient referred to service and as the time was right to do so, they would speak to the family only about services and what it all meant and what their promise to the family and patient would be IF and when the family should decide to make such a choice.  No pressure, no judgment.  The family was respected and was not expected or forced into a position of "having" to make this decision.  It was about informing them and in kindness, supporting them.  We worked as a team to support the family which then supported the patient.

We almost always had a positive outcome.

In Hospice, if the patient is not imminently in the active process of dying; the patient's heart meds and blood pressure meds are continued.  No one wants to see a patient who has months of life left have a stroke and then continue to live, but in a much worse state than prior to such a stroke event and all  that can entail with paralysis and loss of speech, etc.

Hospice, also, if the patient is not moribund and imminently dying, does indeed treat infections such as UTIs and light pneumonias.   Not overwhelming pneumonias with the patient right at death's door; but those lesser conditions.  This does NOT prolong life, it treats the patient's comfort level and believe me, that old-fashioned ridiculous saw about pneumonia being an old person's, "best friend," is just that; a ridiculous old saw from way back prior to the turn of the century, prior to medicine as we now know it.

UTIs and pneumonia are highly, highly uncomfortable and cause all sorts of secondary issues, all of which are preventable; so Hospice does indeed treat these in patients who still are in the stream of life.

Hospice, a good Hospice, will always treat the patient as a LIVING person; because they are.  Active dying is something else entirely.

So; as in everything, one size does not fit all.  Variances are as many as there are grains of sand on the beach.  Hopefully, for those poor patients who are in the process of actively dying who have family in steep denial and putting their LOs through all the various extreme measures, hopefully they will come to a place where there will be supportive professionals to help them work through their situation and their grief.

Johanna

Johanna, I surely don't want to be accused of spreading a 'ridiculous old saw' if it is false.  For the record, that information about pneumonia being a relatively peaceful and fast way to die came from the PDF "Hard Choices" which was last updated in 2001 and written by a chaplain who worked in hospice.  I found that an excellent reference overall and it has been recommended on this board.

I believe the author was referring to people who are close to dying, but then this thread is about end stage decisions.
 

Anyway, I apologize if that information is not true.  I do try to be accurate, but I am not an expert by any means.

 

Yikes!  I certainly could have chosen better words.  I'm sorry if you felt I was being unkind; that was not my intention.

So many people come here to read the postings; scores of them are not registered as Members; they just  come online and read.  So; for every 10 or 20 people or whatever the number one sees that have clicked on their post that are registered members; there may be hundreds of others reading that are not registered.  I try to remember to respond in that light as there are so many different levels of experience and understanding.

Yes; if a patient is at very end-stage and moribund; actively in the process of dying; then one does not treat pneumonia nor are antibiotics given.

However; in Hospice, the rule of thumb is; patients come in with "six months" or less of life as an anticipation.  However; even that is not a hard and fast rule and some Hospices are more open and lenient than others.  We have caregivers here whose LOs have been on Hospice for up to two years!

If the person is in Hospice, (I worked with Hospice), and the person is not yet approaching death in an imminent manner; and if the person is kind of stable in his/her decline; then the UTIs are treated and modest pneumonias are treated.

If you have a person at death's door and about to cross the threshold, pneumonia symptoms are not often felt; the person simply does not oxygenate and slips away.

For other, highly aware patients, pneumonia can be gosh awful uncomfortable and miserable.  If you have ever had pneumonia, you know what I mean.  Fever, sweating, pain in the chest and/or back, often shortness of breath and even the feeling of choking with mucous; and monumental coughing, coughing, coughing and then coughing some more;  one is not able to get rest and it goes on day and night.  And this can be in just a moderate case of pneumonia; this aware patient is treated.

So; different situations for different circumstances.  Now, IF a patient who is highly alert and aware and still has months left to life decides they do NOT want any treatment; Hospice will discuss that with them and then honor the patient's wishes, or the family wishes if the patient is unable to format their own plan of care.  Hospice mission is NOT to make the patient die earlier; they are there to bring the best quality of life and comfort that can be to the patient for the time he or she has left and to relieve the patient from inappropriate heroic measures.

Anyway; I am sorry if you thought I was criticizing you.  That as said, was not my intention and that being said, every situation is unique unto itself.  We all do our best with the challenges at hand as they arise; and that is all anyone can do.

Johanna

Thanks for the discussion.  I know this is where we are headed and I need to get myself together so I can be there for my mom in the way she wanted me to.  Not looking foward to that. Thanks again.

Maggs