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Old 11-28-2011, 04:12 AM   #1
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How much time, or is this the end?

It's been awhile since I have posted here, but things seem to be getting worse fast.

My Mom has been in assisted living and doing reasonably well over all. Until about a month ago when the facility noticed she has severe ankle swelling. The Dr determined that she was having a-fib and hospitalized her. She briefly got stabilized and was then moved to an SNF, where she has been living since, as it has been determined that she now needs a higher level of care on a daily basis.

Night before last, we got a call that she had developed pneumonia, so the snf sent her back to the hospital. She is considered non-responsive, still has pneumonia, and the congestive heart failure is not under control.

They are giving her fluids, IV antibiotics, and her psych meds intramuscular. She cannot eat, is not aware of people being in the room, and unresponsive.

She has a DNR in place. The Dr's are suggesting that she "may" be terminal.

I am wondering how long will she hang on in this condition? She weighs only 108, which is very thin, and she is not getting any nourishment now. We will not tube feed as she was specific about that in her original DNR papers.

So, my questions are, how likely is it she will rally under these circumstances? And if she doesn't, what is the likely time frame until death without nourishment?

 
Old 11-28-2011, 07:59 AM   #2
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Re: How much time, or is this the end?

That is the unknown question Gaylec. There is just no way of knowing for sure. BUt from what you are saying, the chances are slim.

To go from Assisted Living to SNF is a big jump so the heart condition was not minor. The pneumonia is another issue and depends on what type of pneumonia it is. Viral pneumonia, there is not much that can be done except keep her comfortable and let it run it's course. Recovery depends on the bodies ability to fight the infection. Bacterial pneumonia can be treated with the antibiotics effectively depending on the extend of the infection and the bodies ability to fight the infection. Aspiration pneumonia is difficult to treat effectively. Then you have her depressed immune system and heart complications along with the lack of nourishment because she is not eating. It is all working against her.

She does have a DNR. You know her wishes. Doctors will approach the end of life very cautiously with a family. If he has mentioned Hospice it is probably time. If your Mom doesn't respond to the antibiotic in a few days, then you know it is time.

There are lots of medical procedures and treatments you can try. Some may give you a little improvement and some will do nothing, while some will cause more problems. You need to exhaust what you think is necessary for your Mom and for your peace of mind. But there will be a moment when you know, even if you don't want to accept it, that it is time to let Mom go home. Think of her wishes and what she would want for herself. If possible put aside your desire to keep Mom close for a moment and look at this from her point of view. Is this what she would want?

To answer your last question, how long can she last without nourishment, the answer is again fuzzy. (like everything else in this disease). Hydration is much more important to life than nourishment. Without the fluids the process would be quicker. With no nourishment it could still be weeks. My best guess is that some other medical problem will come into play before the lack of nourishment.

My heart goes out to you having to make these decisions. Just trust yourself and know there are no right and wrong answers. There is only the answers you come up with for yourself and your Mom. Think of her, her wishes, her condition, and the toll this is taking on her. Know I will keep you both in my thoughts and prayers And please let us know how you and your Mom are!

Love, deb

 
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Old 11-28-2011, 08:19 AM   #3
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Re: How much time, or is this the end?

Thank you so much Deb. You have reiterated what I am already suspecting. This is just so sad. Two months ago she was doing reasonably well, all things considered. She has just gone down so fast since then.

I will keep you posted and thanks so much for being there.

 
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Old 11-28-2011, 08:20 AM   #4
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Re: How much time, or is this the end?

Thank you so much Deb. You have reiterated what I am already suspecting. This is just so sad. Two months ago she was doing reasonably well, all things considered. She has just gone down so fast since then.

I will keep you posted and thanks so much for being there.

 
Old 11-28-2011, 12:29 PM   #5
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Re: How much time, or is this the end?

i so feel for you. try to remain strong. its in gods hands now.

 
Old 11-28-2011, 06:29 PM   #6
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Re: How much time, or is this the end?

Gaylec it is hard and it is sad. I went through the same with my Dad and will sooner or later with my Mom as well. Your post prompted me to have a discussion with Mom's Hospice nurse and my sisters today on this very subject. Mom has a bad cough and I just wanted us all to be on the same page before and if it was needed. So thank you Know I will keep you and your Mom in my thoughts and prayers for comforts and peace....

Love, deb

 
Old 11-28-2011, 08:04 PM   #7
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Re: How much time, or is this the end?

Quote:
Originally Posted by Gabriel View Post
Gaylec it is hard and it is sad. I went through the same with my Dad and will sooner or later with my Mom as well. Your post prompted me to have a discussion with Mom's Hospice nurse and my sisters today on this very subject. Mom has a bad cough and I just wanted us all to be on the same page before and if it was needed. So thank you Know I will keep you and your Mom in my thoughts and prayers for comforts and peace....

Love, deb
Thank you so much Deb, for just being here.

Today is not so good.Mom is in intensive care, heart is erratic, Dementia is pretty out of control. They have her in soft restraints, as she keeps trying to get out of bed. Physically, she is borderline. There is some possibility that she could rally, they just don't know. But, they keep reminding us that it is possible that she is terminal. I accept that. She has a DNR, we are to go to no extreme measures.

It completely breaks my heart to see her like this. She is afraid, feels out-of-control, and has no idea what she wants, needs or anything. She is fighting. Which maybe is good, maybe not.

I made it a point as I rubbed her back, and held her hand, to tell her how much I love her, have always loved her, and will always love her. And, I told her several times that, if she needs to go, it's OK. That it's OK to quit fighting and let go.
At one point I calmed her down and was petting her forehead and I told her very clearly, "Mommy, I love you, more than you can know."

And I guess the miracle of that today, is, she turned her head, looked me straight in the eye and replied, clear as can be "You must always know how much I love you honey." Where that clarity, or verbal ability came from, I will never know, but my husband was there and heard it clearly too.

Still no surety what is happening here. BUT, we have agreed she needs to go into Hospice care now. She has a very specific DNR, so they are moving her out if ICU tonight and into more of a comfort management situation.

Now the big issue is reminding my completely freaking out brother, that this legal DNR, is what I will honor; and not HIS wishes of prolonging her life at any cost.

Please keep us in your prayers. This is a very sad and difficult time.

If I can give any advice from what I have learned, PLEASE make sure you have POA and DNR documents established before you get to this point. If we didn't have those items securely in place, this would be so very much more difficult than it already is.

Thank you Deb, and everyone else for this board, and your love and support. My heart is breaking, but I know I am honoring, and doing right by my Dear Mom.

 
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Old 11-28-2011, 09:16 PM   #8
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Re: How much time, or is this the end?

Gaylec, you spoke the truth when you advised others to have these legal documents in place. As a society we don't want to talk about or accept death. We avoid the hard discussions and paper work that are so very helpful in the end.

As for brother.... is he as involved in her care as you are? Many times those that are not there have personal issues that lead them to emotional turmoil. Some just can't handle death. Those of us in the trenches that see the suffering know what we need to do for our loved ones. We need to love them enough to let them go. As you, I am lucky to have the legal documents for Mom... and had them for Dad. They made their wishes very clear. I already knew what to tell the Hospice nurse. I just send out a note asking if my sisters were still in agreement with Mom's wishes and so far they are all positive. They know as I do what she wanted. Yep, it does actually make the decision a little easier to make even if it doesn't make the process easier.

Those moments of clarity are not uncommon Gaylec You heard exactly what you thought you heard. I consider them a gift to help us find the closure we need. Whatever happens from this point on you have your Mom's words and know she heard your words as well. Hold on to that in the next days. I also believe in the importance of telling loved ones how we feel and that it is ok for them to go when they are ready. I also told Dad I would be ok and I promised to take care of Mom. We had a thing "Do you trust me?" when he would get anxious. After I made my promises and told him I loved him I ask if he trusted me and he smiled and squeezed my hand. That was the evening before he went home the next morning. It is a moment that I carry with me.

The doctor's will always give you some hope that she will pull through, maybe. But they can't tell you what this episode will do to her cognition and abilities afterwards.... and they can not tell you when it is over. With Dad, and now with Mom, I made the decision to call Hospice. Especially with Mom, it is not because I expect her end soon but because I know what she wanted. Each has their own time to reach that decision.... and I am sure you have done what you know is right!

You have my prayers... for you, Mom, and your brother Hang in there. You have done all within your ability for Mom and now it is her decision to make

Love, deb

 
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Old 11-29-2011, 09:16 AM   #9
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Re: How much time, or is this the end?

Hi~~
Well.. I just went thru this with both my parents this year! Dad passed away in Jan and Mom in June.
I am so sorry...its so stressful. to say the least

Mom was doing fairly well also. and she went downhill really fast
She came down with UTI and very high fever .
Took her to hospital again.. and just one round of antibiotics
Its was not working and she was unresponsive also.
so we contacted Hospice and she went back to her care home to pass away
Traumatic for all of us.
She was almost 90.
She lasted one week without food and liquid

Hang in there....we are here for you

Hugs.
Chris


 
Old 11-29-2011, 09:20 AM   #10
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Re: How much time, or is this the end?

Ask her dr to give her pain meds

Hospice will give her morphine,, which really helped my mom calm down
No reason to suffer now!
Your last post brought tears to my eyes again.
That is so wonderful she talked to you .
My mom tried ...just no strength
but could see it in her eyes that she loved me.

 
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Old 11-29-2011, 11:04 AM   #11
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Re: How much time, or is this the end?

I am so sorry you are going through this. I do agree that you and your mom were given a gift of clarity. My dad passed away two weeks ago, and also had a-fib. He was in assisted living with hospice, and there were a couple of days when he was similarly agitated until finally the decision to go forward with the hospice meds was made.

After that, he was very calm, even when many hours passed between doses. It is hard to know when to let go. Ultimately, when the shut down process begins, nature takes over. I, too, had a lot of worries over when I would know it was time, but now that it is over and he was able to leave after 96 years on the planet peacefully, I have no regrets about the sequence of decisions we had to made.

It is very hard and I wish you (actually all of you) the best. And yes, having all the legal things in place makes a world of difference.
Lynn

 
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Old 11-29-2011, 01:50 PM   #12
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Re: How much time, or is this the end?

Thank you everyone for your support and kindness. Mom has been moved to Hospice care and is less agitated and fearful now that they are giving her morphine. The Dr says there is still a chance she might rally as her lungs sound reasonably clear today, so the antibiotics must be working.

However, the Dr was also very clear that her chance of rallying from this weakens every day that she isn't taking nourishment, and she still has no swallow reflex, so I have prepared myself for the worst. I just feel so very sad right now, but I know she isn't in pain or suffering, and that's the best we can do for her. The rest is a waiting game.

 
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Old 11-29-2011, 02:04 PM   #13
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Re: How much time, or is this the end?

As long as Mom is comfortable, that is the most important focus at this time. You have done all you can. When all the decisions are made and it is time to wait... sadness does seem to take over. Please spend the time you can with your Mom. Talk to her or just sit with her. But grab all the moments you can with her Know we are all here with you!

Love, deb

 
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Old 12-30-2011, 05:59 PM   #14
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Re: How much time, or is this the end?

My mom just went through this. Three days was all it took and she was on morphine the whole time for pain and to help her make the transition. It is terribly HARD to watch!

My sympathies and condolences. Without sustenance and liquids, it cannot take long. I watched Mom for two days off and on; she would still have expressions and seemed to cry (crusted tears left on her cheeks), but she couldn't open her eyes or interact.

Take care of yourself and peace be with you,
Susie

 
Old 12-30-2011, 09:30 PM   #15
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Re: How much time, or is this the end?

Thank you. Mom went on for 8 days. The most difficult days of my life.

 
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