in a dilemma
 

Hema has not been told. I think she gusses.I have a full time nurse to take care of her and change diapers. She is only taking liquids.
Once she refuses to take even liquids I do not know what to do.She has taken a promianse from me NOT to give her life support like nasal feeding etc.I wonder if that is correct.My son has come from the USand my daughter late tonight after our grans graduation on the 2nd.I need your advice

Re: in a dilemma
 

PBK
Of course, you know Hema better than anyone...and will do what is best. Of this, I am certain.

Having said that...As the devoted and loving husband you have always been....I believe you have to honor your promise to Hema, and because of that promise, I also believe you must be honest about what she faces in the days and weeks ahead. I would want a chance to make peace with what lay ahead of me. I wonder if Hema would not feel the same way.

Only my humble opinion...given because I admire and honor both you, and Hema.

You, and your family continue to be in my thoughts and prayers. I wish you all peace, and I hope with all my heart that Hema's transition will be pain free.
Denise

Re: in a dilemma
 

Dear PBK,

First, let me say how sorry I am that this is happening.

For what it's worth: when my Mom was terminally ill with esophagal cancer, she knew she was dying. Nobody had to tell her. She just knew. And when everybody around her tried to encourage her to keep fighting, to keep living, she felt so very alone. She needed to talk about her feelings, her fears, and she needed to let go of life. She specifically asked me to let her go. That was difficult for me, as I had just found out I was pregnant with our second son. I wanted the news of a new grandchild to give her a boost, but it didn't. I wanted to show her pictures of the ultrasound, but she didn't want to see them. She was ready to go and didn't want us to try to hold her back.

Now I know most people are not like that, but there is only one way to find out: Communicate. Talk to her about how she feels, what she wants, what she needs. Whether she wants to continue fighting or to say things she doesn't want to leave unsaid. Dying is a thing we have to do alone, but the path we walk towards death can take many shapes. We all have different needs. If we don't talk about them, or at least give the person who is dying a chance to express their wishes, I think we are keeping something important from them.

Just my humble opinion. I am sure you know her well enough to make a wise choice. But sometimes our own fear and grief is keeping us from seeing what the other person wants and needs.

If she refuses liquids, you could try to ask her why she refuses. If it is because she has had enough, that's a clear answer. If it is because of nausea, you can ask her if she wants you to find a way to reduce her discomfort, even if that means a nasal tube. Life support could prolong her life a bit, but not much. I think the most important thing would be to keep her comfortable.

But again, these are my thoughts, my views. They don't necessarily apply to you.

I wish you strength and love and for Hema that she be as comfortable as possible.

Love

Jacqueline

Re: in a dilemma
 

I am so very sorry your family are facing end of life issues. The choices are so deeply personal, that it is difficult for anyone else to advise about the "right" thing to do. Do you have access to a hospice program? My family used hospice services when my father was terminally ill with cancer, and they were wonderful. About the promise about nasal feeding, I would want you to honor your promise if I were in that situation. I actually have an "advance directive" which spells out what I want done and not done. My heart aches for you and Hema and I send my most loving wishes for your whole family.

Barb A.

Re: in a dilemma
 

PBK,

The others have given excellent advice, and food for thought.

It is my understanding that when people quit taking any nourishment or fluids as they are dying, they don't suffer. I think it's a natural part of the body's process of shutting down.

I think feeding tubes are pretty awful. I'm not sure I'd want one even if I was expected to get well.

I know how devoted you are to Hema, and how much you love her. You know her better than anyone else. Your presence, your touch, your voice will help ease her transition.

Re: in a dilemma
 

I agree with the other people who responded to your message about what to do. I also think Hema knows.
Our bodies and our spirits know what is happening on some level even if nobody tells us the whole story.
Spend as much time as you can with Hema. Talk to her. Tell her how much you love her. Ask her what she wants. Assure her that you will do everything you can to make sure she gets as much care as she needs and wants.
Hugs to both you and Hema during this difficult time.

Re: in a dilemma
 

P. S. Also answer any questions Hema may have.
Hugs again.

Re: in a dilemma
 

I agree with all of the above which is great advice and I'm sorry this is happening to Hema:(

Re: in a dilemma
 

I think Hema knows everything that is going on but I would ask again if she is sure what she wants for you (and her) to be sure. I think you will know what to do when the time comes. But I believe that further communication will not hurt and will only help with the decisions that Hema and you are facing. My heart is with you.

Re: in a dilemma
 

You can use mouth swaps to keep her mouth /lips clean and refreshed making talking, mouth feel a little better, do not force her to take in nourishment, fluids, chances are she will choke and aspirate into her lungs.

Letting go is harder on the living then those whom are ready to go. Play her favorite music, movies, I made a picture DVD with music for my mother in law to listen and occasionally watch, I think it was more therapeutic for every one else.
My mother in law died 7 days before her 89 birthday, last year. She did not let go till all family had come and went. A volunteer playing a harp was in the room.

I am so sorry she is rejecting everyone and things, support your family and spend time together and cherish the memories together, and it is ok to laugh and live in her presence.

God bless you and your family prayers for all. Darita

Re: in a dilemma
 

I join the others in expressing my support to you at this very sad time. You have been such a rock for Hema and she needs you to honor the promise you made, as hard as it is for you
Remember that ones sense of hearing is the last thing to go, so just speak to her and reassure her. She can hear you even if she might not seem to
Keep the faith.

Re: in a dilemma
 

PBK, I'm so sorry that you and Hema have had to go through this. Please understand that you have both done your best, at every step of the way, that you possibly could have. It's obvious from the posts you have made and the questions you have asked. Your love for Hema shines through in each and every one. You're an amazing man and an awesome husband and caregiver for your lovely wife. I think you have received some good advice from these wonderful ladies here. There's not much for me to add, except for the sad fact that I walked in your shoes a few years back and know what you're dealing with. As said, I'm sure at this point Hema knows what's happening and the best thing you can do at this point, in my opinion, is just be there with her and tell her how much you love her and that you're not going anywhere and that you will stay by her side and take care of everything. She will hear you and understand. I lit some candles, put on some nice music in the room, and sat nearby, reassuring her that everything would be ok. I'm glad that you have family coming in to be with you both. Try to rest when you can. You're both in my thoughts and prayers. Take care, brother.

Re: in a dilemma
 

I, also, do not have much to add, except that you are a wonderful, loving husband and caregiver to Hema, and I think that you will do exactly what you know is right for her in your heart. I hope that Hema is not in pain, and I send many prayers to you and your family.

Re: in a dilemma
 

Just to let you know Pibikay that you are amazing and strong and the most wonderful man. I can't add anything more to the advice here - it is shared with you with much love. I wish peace for Hema.
Marie

Re: in a dilemma
 

PBK, you and Hema have touched my life in ways you will never know. I wish you much peace - Hema is a lucky lady to have you in her world. Take care. You are in my thoughts and prayers.