AML Leukemia Final Stages

[Del's Daughter]

My dad has AML leukemia and has entered into the Hosperus phase. My dad lives with my family and I (since April 2008) and we are taking care of him during the end of his life. I thought I was ready for everything, but tonight - for the first time -I experienced his confusion and mental deterioration. It threw me for a real loop and I have been crying and researching for the last 2 hours.

I realize that no one comes with an expiration date, but I feele a very clear picture of what to expect during this time. I need to know tenative timeline with expected conditions that will occur. Please help me get a handle on this, as I feel totally helpless right about now. Thank you in advance for your words of wisdom.

Del's daughter

[WeirdNurseKelly, BSN, RN]

I wish that I could offer some kind of advice. I don't know anything about AML. I am a first year, first term nursing student.

I just wanted to post my condolences. I can't imagine what you are going through right now. I just wanted to let you know that I will be thinking about you and your family.

[Chaya, ASN, RN]

Sorry you are going through this; I know how rough this must be for all of you. It's probably distressing for your Dad as he is probably aware that this is happening. With my Dad, sometimes I found it helpful to do something that could re-orient him, like look at pix of family and friends in the past and present for a few minutes. Other times it seemed more helpful to redirect our activities to something that didn't challenge his memory quite as much, like watching a sitcom we both liked (yay for DVD's!). You can't change what is happening to him and your roles (in terms of who is the caregiver) have changed, but your loving him has not and will not change anf he will know this just by your presence.

Hugs toyou both

Chaya

[lpnflorida]

I am sorry for what you are going through. I know how you feel. I am in a similar situation. I do not know which is better having a time line or not knowing. All we do is live each day as it comes and prepare ourselves as best we can for the ultimate end.

[Blee O'Myacin, BSN, RN]

Just spend all the time you can with him. He may or may not be aware of the increasing confusion - might think it's everyone else that's different and not him (universal no matter the disease). When he starts to get agigtated with re-orientation, stop. Just hold his hand and be there for him.

My father died from end-stage lymphoma 11 years ago. My greatest regret is that I did not fight his family harder - he wasn't married and I was unaware at the time that adult children had legal POA in my state, not his mother. He died on the vent, with three pressors and a trach. All against his DNR/DNI order. When my visits weren't being "supervised" by a "well-intentioned" cousin or aunt, I'd go on and tell him how much I loved him, would miss him but would be all right without him. (and my relatively immature 23 year old self was right on all three counts).

I wish that I could have given him the gift of hospice and a more peaceful transition period. I am so sorry for your impending loss.

Blee

[leslie :-D]

from your dad's perspective, i'm thinking he will experience profound weakness, fatigue and be high, high risk for infection.

it's basically all about supportive care.

he can stay like this for awhile, if he doesn't get infection.

i would try not to look ahead, but embrace 1 day at a time.

many gentle hugs to you.

leslie

[Del's Daughter]

Thank you all for your encouragement and support. Today has been a good day, he even asked to play cribbage (card game). I have strated a log to keep better track of the care he is receiving. It has been theraputic for me and allows for us to have a record. I have also started recording his stories that he gets in the mood to tell about his past. :) Feeling better for now, thanks so much.