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End of Life signs and signals
emile
Posted: Sunday, February 12, 2012 9:37 AM
Joined: 1/9/2012
Posts: 18


I'm sorry to post on such a depressing topic this Sunday morning, but I need advice from those who have gone through this.

My sister-in-law is becoming increasingly frail and emaciated-looking, her skin is gray, and she has lost 11 pounds in the past 3 weeks.  Her pressure ulcer is very slowly healing, but her lungs sound "crackly" according to the nurse.  Her hospice doctor prescribed a heavy duty diuretic to take the swelling down in her extremities and relieve the load on her heart.  It worked for a while, but I see the swelling starting up again. Despite all this she still sits in her wheelchair in the dining room and feeds herself.  And she has a good appetite.

And lately, by some miracle, the Alzheimer's fog has lifted, and she seems to have slightly more recall of her family and the events in her life that gave her pleasure.  I was wheeling her past the newly planted rose garden in her residence and asked her if she had ever had a rose garden at home, not really expecting an answer.  She replied calmly that she had one at one time, but it didn't do well.  And then without prompting she said that she had always enjoyed her garden.

 

I know that no one on earth can predict exactly how this process will go, but I would like to have some general guidelines so that I can prepare the rest of the family.  I've read the pamphlets that were recommended here, and it seems to me that she is starting to leave us

.

Thanks again for the support I've found here.


Stephanie Z
Posted: Sunday, February 12, 2012 10:05 AM
Joined: 12/15/2011
Posts: 4218


 emile,  I'm so sorry your sister in law is not doing well. You know, I'm sure that even a doctor would not predict how long someone has to live. Having said that, however, I can give you my opinion based on past experiences with patients I have cared for and I'm sure you will get more real life stories from others on this forum.

The fact that she has lost so much weight in the past 3 weeks and still has edema in her legs tells me two things. First that her kidneys are not functioning normally any more and second that she is at high risk of other things happening such as a buildup of fluid in her lungs and abdomen. I know she has dementia  but I don't recall if she has any other physical problems. The gray cast to her skin could be from reduced oxygen levels and this would happen if her heart was not able to handle all the fluid and circulation was compromised. My guess would be that she is nearing the end.

     When people are close to death, there is often edema in the legs as the kidneys start to shut down. The person will stop eating and then stop drinking. They will not be hungry or thirsty because the body is no longer able to absorb, metabolize or excrete nutrients or fluids. If fluids were pushed, the edema would get worse so the body defends against this by reducing even the sense of thirst.

     Eventually the person will slip into a coma like state. Their limbs will become mottled (blotchy) because the body is closing off the circulation in the arms and legs in an attempt to preserve the organs and brain. The limbs will feel cold, but the core of the body will have a high temperature so heavy blankets will only make the person uncomfortable.

     Just before death, the breathing will sound moist and rattle a bit. This is because fluids have accumulated in the back of the throat. This may last a few hours and then suddenly the breathing will simply stop.   Most people with dementia do not suffer or struggle, they simply slip away.

I'm not sure you wanted all of these details but I've always found it was easier if families knew all of this. I believe that right up to the end, on some level the dying person knows when their loved ones are with them. I know you are doing all you can to comfort and love her. When she becomes bed ridden please continue to talk to her, stroke her forehead, play her favorite music, give her hand massages etc. It will also help family members to say goodbye if they can offer some comfort when they visit.

Let us know how she is doing and know that she will be in our prayers.

Stephanie


scoutypants
Posted: Sunday, February 12, 2012 12:06 PM
Joined: 12/26/2011
Posts: 30


Hi Emile,

 

I am so sorry about your sil.  My mil just passed away on 1/29 and I have to say that Stephanie's post (as she said, without knowing other things that might factor in) describes the decline very accurately.  I just wanted to say that my mil had about a week before she stopped eating and drinking completely where her appetite picked up.  She had not been eating or drinking much and then she was eating bologna sandwiches and seemed to be a lot more "with it" mentally.  It was like a little gift before she died.  She had always loved country music but had not cared to listen to it for a very long time.  As her AD worsened she became agitated with it.  During this week she was happily listening again.  I have heard of this happening a short time before death but this went on for days.

 

Then as suddenly as she had seemed to be doing better, things spiraled down again.  Over the past sev months I have read everything I could find on signs of impending death.  I wanted to know exactly what would be happening during this process so I would not be shocked and could just focus on giving her love and keeping her comfortable.   That was the best thing I have ever done.  It was still really painful and hard but at the same time I knew it was part of the natural part of the dying process and I was able to handle it a lot better.  We loved her and talked to her right up until the end, and she appeared to be comfortable and her passing was very peaceful.  Her breathing was very short on the inhale and long on the exhale.  She took a bit of a longer inhale on her final breath and then another never followed.  I know everyone is different but I know it helped me to read how death had occured for others.  I was somehow prepared and more comfortable at every change in condition.

 

sending prayers your way.  Noone can know how long you have together.  just keep her comfy and give her love

 

 


lab3421
Posted: Sunday, February 12, 2012 8:17 PM
Joined: 2/7/2012
Posts: 7


Stephanie -

 

Thanks for the info.  My mom is nearing the end now.  As of today she is off liquids too.  Dad passed so unexpectedly on New Years Eve.  We were are ready for it to be mom - not him.  Good to know what to expect.  I keep telling her it's ok to go.  I'm the only child - doing this on my own.  Hospice comes - but the 24 hour care would not be her regular nurses so I'm not comfortable with strangers in the house during this time.  Prayers for us too please.

 


Stephanie Z
Posted: Monday, February 13, 2012 8:38 AM
Joined: 12/15/2011
Posts: 4218


ilab3421 Of course you and your mom have our prayers. She is lucky to have you. However, I would encourage you to use the hospice nurses. They CAN be trusted and if you decide not to, you will be very tired and emotionally worn out just when you need to start taking care of her final arrangements.

When my FIL died we had hospice at home for him and I was his prime caregiver. He did not trust anyone else (he had lung cancer and was confused from anoxia) so I tried to do it all. The day before he died the hospice nurse took one look at me and insisted on having someone stay the night. I realized I was physically totalled. I was pale, my BP was too low and my ankles were so edematous they were hanging over my sneakers!  Not good. They sent a nurse overnight. He was unconscious and I slept soundly in my own bead instead of the recliner at his bedside, until the nurse woke me at 3 AM because he was so close to death. He passed away about 10 minutes later. My husband and I were so grateful to have her there. She called the funeral home and helped me clean him up and put some new PJ's on him for the trip (something I felt I had to do). By six I was packing up my family and heading to NJ from Virginia to plan his services. I don't think I could have done that without having someone there.

Stay strong, God Bless you and your mom

Stephanie


emile
Posted: Monday, February 13, 2012 3:46 PM
Joined: 1/9/2012
Posts: 18


Thank you, Stephanie.  As usual, you are a fount of information.

Having truly believed that we were losing her over the weekend, today our roller coaster seems to be on the way back up.  The kind and caring hospice nurse said that sil's pressure ulcer is continuing to heal, and the diuretic is still doing its job.  Her lungs are clearer, and she is getting a decent amount of oxygen now that she is on a portable tank whenever she is up.  Nothing can cure her heart problems, or the AD, or the COPD, but right now she seems to be stable again.  If only she would stop losing weight...

So we will ride back up and enjoy the day, or week, or month that we've been given.


emile
Posted: Friday, February 17, 2012 4:33 PM
Joined: 1/9/2012
Posts: 18


Well, Monday and Tuesday were a blessing and we were able to enjoy talking with sil and sharing memories of happier days.  But then the cutain drew closed for the last time.

My niece is driving in from the airport and we've been whispering in her ear that her daughter will be here soon.

I'm hoping and praying that she will get here in time.

Hospice sent their chaplain over last night and she was a great comfort to all of us.

 

It's a relief to know that her suffering will soon be over.


MacyRose
Posted: Friday, February 17, 2012 4:49 PM
Joined: 12/15/2011
Posts: 3941


Oh, Emile, I feel such empathy for you.  Know that I am holding your hand in friendship through this difficult time.
Stephanie Z
Posted: Friday, February 17, 2012 5:22 PM
Joined: 12/15/2011
Posts: 4218


Emile, How sad for all of you. I will pray for her comfortable passing. She was blessed to be in a loving family. We'll be thinking about you.

Stephanie


lab3421
Posted: Saturday, February 18, 2012 8:25 PM
Joined: 2/7/2012
Posts: 7


Thanks Steph -  

 

Mom comfortable - how she is hanging on is beyond me.  Going into our 4th week of no food & starting our 2nd week of no liquids.  She is still conscious & figiting - I'm using those popsicle sponges and teeny tiny ice chips along with the Biotene moisturizing mouth sprays.  She is sleeping mostly today - using the lorazapan at night to keep her calm and relaxed and have her classical music playing softly for her.  I've told her it's ok to go & I will be fine - that dad is waiting for her so I hope she will let go.  I will probably have the hospice 24 hours once she is no longer conscious.  Strangers terrified her and I want her to be calm - so am waiting for now. We had made all her arrangements last summer so that's all done. Keep the prayers coming.