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Topic End of life issues, be prepared Go to previous topic Go to next topic Go to higher level

By lurkingforacure On 2011.08.27 17:57
There are many posts here about powers of attorney, DNR, feeding tubes, etc., and those are all good things to plan ahead for. When my mom was rushed to the hospital after her failed attempt at rehab in skilled nursing, I was faced with issues I had not thought about, and want to share some so you will not have to make very hard decisions in an incredibly short period of time under near-impossible stress.

I was told in the emergency room that my mom was "actively dying" from sepsis, which is almost always fatal in seniors. In fact, I've never read or heard of a senior beating sepsis. My mom was actually in septic shock which means the infection was in the last stages, and thus "actively dying", which means just that. Your choice at this point is not a choice, you get comfort care, another medical term. Hospice can help here, and most know about the feeding tube (my mom would not want the feeding tube in this circumstance, but I got stuck on IV fluids, something we had not talked about). I couldn't stand the thought of my mom being thirsty, it made me insane and I cried and cried, I just didn't know what to do. Should she suffer more but for less time, or suffer longer but not as intensely? Hospice told me all about prolonging the inevitable and why people do that but at the end of the day, well, what a position to have to be in. It was the worst I'd ever felt in my life.

One of the nurses shared with me this: when we are dying, our organs are shutting down. Forcing food or even IV fluids into someone who is actively dying stresses the body more and can actually cause pain and discomfort. With respect to fluids, even if they are IV, the kidneys cannot process the fluids and so they ends up in the is very uncomfortable and of course, since kidneys cannot process the fluids, they are not hydrating anything and the whole purpose of the IV is defeated. As hard as it was to withdraw the IV, it would have been even hard to watch my mom suffer more because I "felt" better thinking I was hydrating her.

My 3am google research session confirmed this and I let go of much of the guilt I was carrying over this issue. When you learn that the only things you can do will actually make things worse, acceptance comes from somewhere and you let go.

Another thing: my mom was in the hospital for less than three days. I got so tired of each shift's chaplain, social worker, nurse case manager, etc., it was amazing how many there were, coming into her room to "talk" to me when I knew I had very little time and just wanted to hold her hand and be alone. In retrospect, I wish I had told everyone "thanks so much, I do appreciate your being here to talk to me, but I have very little time left with my loved one and want to focus on her for now...I'll contact you later when I have more time to talk". If you find yourself in this position, be strong: your loved one is leaving, the employees will be here long after your loved one is gone and you can meet with them then. They will understand and if they don't, they shouldn't be in the business. I worry about being polite and ended up talking to people who easily could have waited a day or two to speak with me.

Another tip: hospice told me the last thing to "go" is our hearing. So I brought a CD player up to the hospital and had beautiful music playing for my mom, even the nurses were touched. I like to think she could hear it and that it helped take away her pain and any fear as she journeyed onward.

I am still grieving terribly and keep looking at pictures of my mom I found that I was never allowed to see growing up, for some unknown reason. Pictures of her when she was young, then a new mother, then later, she was always so beautiful regardless. It is so hard to go through her things and realize that they represent her life on this earth but that she is gone although they are still here. I so wish it were the other way around.

I don't post as often as I would like but I think of everyone here often, and wish you all peace.

By dkleinert On 2011.08.30 09:51
I am so sorry for the loss of your Mom. Thank you so much for this post - I so understand.

In July we went thru this with my PD husband's Mother. We always thought that her DNR orders would make all of the decisions for us, but that was far from true. Apparently in Texas anyway, if a patient is in the hospital, the DNR is no longer applicable, and we had to decide what level of care we would agree to. The choices were not easy to make, and because she was in congestive heart failure, she would rally and then crash again, over and over, so for about 5 weeks she was in and out of the hospital and ER, in critical condition, then not, We found Hospice to be of some comfort. Several times we were told she was dying, then she would rally for a day or so, so decision making was really difficult - the guilt over making the decision to withdraw support was so hard and gut wrenching for us. In the end she mercifully passed in her sleep at the nursing home. All of this made wonder what I will do for my PD spouse. After seeing him so vehemently resist withdrawing IV's, etc., for his Mom, I don't know what I will do when the decision is solely mine to make. You post soooo helps me. Thank you.

By parkinit On 2011.08.31 19:11
Your message is timely. I just sat and reviewed by husbands health care proxy information to review and solidify my knowledge of his decisions.

It is imoportant to remember that when a body is dying the IVs unnecessarily prolong the journey and that we must do what is best for the person and not us - to want to keep them here longer with us.

Hugs to you and thank you for your post. it is important to talk openly about our 'dying wishes" with our spouses or other loved ones so they know our wishes and we know theirs.

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