My husband was hospitalized 2 months ago with an infection in his knee since has had multipule surgerys, 2 strokes, siezures and shows signs of late stage dementia all since he's been here. My husband's daughter and his doctor talked me into having a feeding tube put in to keep him alive. Mentally he's just not here and I see every day that this is not what he would have wanted. He's bedridden and tied to a bed with no signs of returning home.
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If you are not prepared to initiate a DNR you may have to go to court to be named guardian for your husband so that you and you alone can make the medical decisions for him, since you and his daughter cannot agree on the way to proceed with his care. Given your questions above about proxys I am thinking that there is not one in place naming someone to be the voice for your husband when he is no longer able to speak for himself. I do not know how long ago his dementia was diagnosed but if he was formally diagnosed while still competent his doctor should have discussed this with you in depth. If he/she did not I am deeply sorry for the impact you and your family are now experiencing due to their negligence. Far too many families find themselves in your exact shoes without any planning in place. My hope for you is that you and your husband had a close relationship where you were able to talk openly about your wants and needs if these situations ever arose in your later years. With that you may have some clarity and peace of mind.
I wish you peace going forward. You are on a path filled with bumps and steep curves. Be sure to lean on any and all support you have available to you, including here. This is far too much to take on alone, nor is there any reason to do so.
Love your husband through this but remember to love yourself as well. I look at dementia as something that needs a village to tend to it. Let the carers tend to his medical and physical needs. Then you can get back to being his wife, in whatever way that works for the two of you at this point in his disease. Treasure the moments you have with him as you will not know which will be your last.
Take very gentle loving care of yourself. With peace, gratitude and grace XO
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If things really are shutting down, that tube will not keep him alive indefinitely in any event. I like Heather's comment, even though just having the tube probably does not hurt and there might be other reasons for the high residuals/slow stomach emptying that could be helped medically. Worth the discussion with a compasssionate medical person to see what could be done, and your opinion on whether he is in pain would be very pertinent. Someone like that can try and help explain more to your daughter if she is not grasping what is happening and thinking recovery, imrpovement, or stabilization is in the works when it isn't. The decision you make with your heart and your head - lovingly but realistically - cannot really be "a mistake."
So... consultation with doctors and specialists who agree that his feeding tube should be removed might give you the grounds you may need to convince any doubters in your family that your husband's wishes would be to let him go.
That will be a sad time for you all, but it would be what he would have wanted.
Just a suggestion as to how to proceed...
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