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lisadaughter Asked August 2013

How do you handle guilt of putting Mother on comfort care?

She had a massive bleeding stroke in the interior of her brain, she is 88 years old and is said to be terminal. Family is trying to follow her health care directive and tenets of her Catholic faith. It has been over a week since she last had hydration or nutrition. Palliative care doctor and priest in hospital said that because of her condition putting tube in stomach, she cannot swallow, would be burdensome and only extend her suffering and not change final outcome. I understand this, but they are not slowly watching her die.

Jennie33 May 2016
My mom passed away a month ago. She chose hospice care when it became apparent that the only way to continue to stay alive was through the use of breathing machines and that she'd never regain her strength and health and any quality of life. Still, part of my wanted to do whatever it took to keep her alive! She could still talk and think and if there's any chance of a breath left to take, shouldn't we take it? Shouldn't we fight for it? ... There are times we should, but there are times we shouldn't. I saw how much she was suffering and I knew (and the doctors knew) that until her death that suffering and pain wouldn't end. Her body was done. And while at first I wrestled with the question, "Isn't choosing hospice choosing to die?" But I quickly came to see that hospice or comfort care isn't "choosing death" in any way. It was choosing nature, choosing not to use aggressive or artificial measures just to keep breathing at any cost. We were letting her body do what it was doing and had done. God was calling her home... it was her time. And it was time to surrender and face the inevitable no matter how much we would miss her. It was so amazingly hard to watch her die, but I do believe that her soul goes on, that she's no longer suffering or in pain, and that I will see her again one day. Praying for peace in your situation, too. God will bring it to you. Blessings to you and your family.

genessa1601 Aug 2013
So so sorry for you Lisadaughter. I just went through this with my Mother, she was in hospice for 11 days and passed last Wednesday. At first I was against the hospice/comfort care and was not in favor of the morphine they were giving her. But after having pneumonia & a UTI she had been sent to a nursing home for rehab (she fell). She got a staph infection there and pneumonia and another UTI and a c dip (?) infection that was ravishing her body. I finally realized it was the right thing to do for her and I felt I was being selfish to try and keep her here. As I watched as she took her last breath and her heart stopped beating, my heart screamed no, but I thought peace at last for my sweet Mama. She would not like laying there while her family watched her slowly die.

So YES comfort care is a hard thing to do, but if there really is no hope, I think it is for the best. I prayed and prayed and God finally gave me peace about it. So don't feel guilty if it is the best thing for her, she wouldn't want you to. My thoughts and prayers are with you...God Bless!

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Veronica91 Aug 2013
There is no guilt in choosing comfort care. It is the most humane thing you can do for your beloved mother. Artificial nutrition will only put an added stain on a body that is preparing for death. Make sure she is really comfortable and the nurses are keeping her clean and dry and that her mouth is properly cared for. You can help keep it moist by giving ice chips or wetting a swab, the nurses will show you how. Look for non verbal signs of pain. Grimacing moaning drawing the legs up, rapid pulse. You can also check that yourself. If she is not completely unconscious bring some thing soft from home like a shawl or favorite sweater to put over her. As she is Catholic I am sure she already has her Rosary in her hand. Try not to just sit there and count every breath. Talk to her read out loud talk about current events, re-tell family stories. Tell her anything you have been keeping secret that you feel she needs to know and ask for forgiveness if appropriate. Rub lotion on her body massage her anywhere that can be exposed as long as it does not disturb her. Quietly play music you know she likes. Lack of food and water do not make a dying person suffer. It is said that it allows endorphins to be released which help calm and comfort the individual. It is OK to lie on the bed beside her, cradle her and stroke her. Try not to touch her head that irritates many people. Make sure you take care of yourself. I know the last thing you want to do is eat but try and avoid a lot of caffeine. Many hospitals will allow you to sleep on a cot in the patient's room. Sometimes a patient will pass when the loved on has left the room. Don't feel that you should be there all the time if she dies when you are not there it was her decision she did not want you to have to experience that. and one last thing a dying person may have a period of consciousness in the hours or the day before they die. If this happens enjoy it to the fullest and as Ladee says kiss her goodnight. it is so wonderful that you have a Dr and priest who understand the dying process and are not denying it and putting your mother through un-needed discomfort. She is in God's hands now

LadeeC Aug 2013
As harsh as this sounds, it's also a reality, given what you've said ...

To intubate for fluids and nutrition would mean to watch her die more slowly. Your mother has already decided what she wants. I can attest, from watching my own mother through this process (who literally and consciously chose to stop eating and drinking), that it's a less painful way to go, than providing mechanical means of continuing vital functions.

Talk to her. Tell her it's ok. Get over your guilt any way that you can, so she believes you, and tell her plainly, that it's ok to to let go and leave. You'll miss her, she'll always be in your heart, but she doesn't need to stay for YOU.

And, actually .. yes, the doctor and priest ARE watching her die, along with you. And they do it all day, every day. It's what they do. Trust them.

Kiss her goodnight and say good-bye. It's the hardest ... and kindest ... thing you'll ever do.

3pinkroses Aug 2013
My heart goes out to you in this most grievous situation. Comfort care is the kind thing to do as it alleviates unnecessary suffering and allows the person to transition peacefully. I realize this is a difficult time, but having the support of the doctor and priest is most comforting. You are doing the right thing.

I've been through this and it is gut wrenching to witness; but I did find solace in the fact that I was able to facilitate comfort for my mother and allow the natural process of passing. So many of the elderly are alone in their suffering with no advocate. I hope you can find peace in the knowledge of helping your mother when she can't help herself. There is no guilt here; just love and understanding.

Hugs to you and take care.

StandingAlone Aug 2013
It sounds like you're doing the very best that you can do. Is is possible that in her current mental state she's unaware of what's happening to her? If she had a massive stroke, especially one with bleeding, your mom's spirit is probably buried deep, away from it all, waiting in a quiet place to just...fly.... That's how I view coma's, and people close to death.... I know it's very, very hard on the outside though... I'm having to watch a slow death as well... I wish you the best...stay strong...

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