a turn for the worse

[affected]

I will tell you that when Chris went into actively dying I stopped fluid and nutrition - that is a valid part of end of life palliative care.

The first day he had about half his small daily nutrition, and then I knew he was truly dying so I stopped.

He passed so peacefully and within only a few days.

I know what you mean, it's not an easy decision, but with fluid and nutrition she could drag out for many days, even weeks. I know that would not be my choice in the same situation.

Did she have her wishes stated for this situation? It is so important for PALS to make their wishes known as then it is easier for us as CALS to honour that.

My Chris did have a directive and I knew his wishes, so I had no problem doing his last days the way I did and seeing him pass peacefully. Many hugs to you, this is very hard xx

 

[Nuts]

Peace, and I hope you find that place again soon, I've just caught up and am so sorry for the place you are now. Please don't be so hard on yourself--we are all just human and life is about growing. One of the many great difficulties of this disease is that we don't know how long our loved ones have. When our children talk about putting off huge life changes or events in order to stay close, I remind them that we don't know how long they'd have those plans on hold--a very long time if I have my way, but that is not what we want for them.

Sending you hugs and prayers for peace--for both of you.

Becky

 

[peacecomesfromwithin]

We are moving her to in-patient hospice today, away from the hospital. We are planning to stop fluids and antibiotics. They said it can cause edema and other issues as the body stops being able to process fluids and formula. And yet, because she has had limb onset, her diaphragm is kind of the last thing to be totally affected by the disease. So it may be more than a few days.

It's absolutely maddening, actually. One doctor says that she could have hours. One doctor says she could have days. One doctor says that she could have weeks. The "hours/days" doctors say not to leave her side. I haven't been home in days. I guess I'll stay at the hospice too. I'm just so ready for the unknowns to be over, but on the other hand, the thought of the known... of her being gone, is unbearable.

 

[vltsra]

Peace, thinking of you at this difficult time. Even at this point the doctors can't tell you an exact time and I know you want to be with her.

V

 

[lgelb]

So sorry, Peace. I would try to ascertain her wishes, create a warm space (music, candles, photo slide show, whatever she likes) and help her do/see/hear anything undone and be at peace. She will also be happier under any circumstance if she knows you are at peace (insofar as you can be) as well. If there is truly nothing more for her to do and she feels it is her time, she will likely not have too long a journey.

Best,
Laurie

 

[JennyC]

I'm so sorry Peace, I understand what you mean about wanting it over but then having to face the other side of the coin being that she is gone. I think they are totally normal feelings. I wish I had some words that would bring comfort. Just know that we are all here for you.

 

[affected]

Hugs peace, it's been so fast and sudden and so much happening and yet she seems to linger. I am glad she is being moved to a hospice as you will both be more comfortable there.

No matter how experienced the doctors are, you cannot truly predict how long she has. I think the more experience you gain in hospice the more you realise how unpredictable the death process can be, especially if a family member wants you to be accurate.

Sending you all the strength I can xxx

 

[Narrowminded]

Sending hugs and prayers Peace as you walk this road.

Sue

 

[scaredwifetx]

So very sorry Peace! You have my thoughts and prayers.

 

[sunandsea]

I'm so sorry Peace, to hear about your mom's sudden decline and your pain. I noticed you are in the DC area. I am in Fairfax, VA and not far from you. If I can do anything, please let me know. My thoughts and prayers are with you. Judy

 

[affected]

Thinking of you all the time, and your mum xxx

 

[Aussiemndcarer]

Sending hugs your way!

 

[Margesmn]

Sending you peace for the coming days. Prayers for you and your family.

 

[Erika]

Good morning Peace, thinking of you and your mom and praying peace, strength and comfort come your way. Hugs
-Erika

 

[affected]

I'm thinking of you as well peace xxxx I hope you can feel the love and strength we are all sending.