He is in pain as I am is caretaker and can tell when he is in pain. I want him to be on hospice, he has been in and out of the hospital for 3 weeks now, and yesterday developed olive green fluid coming out of his J tube stoma. doc told me to stop the continuous feeding and he will come to the house this am and see him. i need to put him on hospice, and have no problem contacting them except for my mother who is his first guardian. It's been a year since he has rapidly been advancing thru the stages of alzheimers. Mom, now, is not in the right state of mind, and with me being a medical assistant, i feel i should take charge and make the right decision. It stated in his will, no means of artificial devices or anything to sustain his life. My health is slowly going down hill as well, how can i take care of dad if i am not well? Does anyone agree with me......?
I was care giver to Mom for 8 years after Dad died. Although I have two sisters and one even lived in the house with us, I handled everything alone, I had to, one sister worked long hours and lived a ways from us with two children and her husband had died....the other sister was just mad at me for being POA rather than her so my punishment was to give zero help.
In April I had a breakdown and the doctors told me that I could not continue or I would have a heart attack or stroke. So I moved out and left it all in sisters hands. A caregiver was hired for 8-12 hours a day, then sister said it was not enough, she could not handle Mom so she needed to go into a nursing home.
We finally found one and she was there for two weeks and had a mysterious fall that made two large bruises on her right forehead and back of head. They waited 16 hours before sending her to the hospital and by then it was too late, as she had 3 brain hemorrhages and she died several days later in hospice care.
I was glad I was on medication because I don't know how I would have dealt with this had I not. It is very difficult to live up to the wishes of someones Health Care Directive, BUT you must. It is WHAT THEY WANTED AND THEY CHOSE YOU BECAUSE THEY HAD FAITH THAT YOU WOULD CARRY OUT THEIR WISHES!
I said NO to everything, no feeding tube, breathing tube, No, No, No! My mother, just like your father, had no hope of recovering. She would have been a vegetable. Your mother wants to keep Dad alive at all cost because she does not want to lose him. YOUR FATHER WANTS TO BE LET GO OR HE WOULD HAVE NEVER WRITTEN UP THE ORDERS.
Cooler heads must prevail and you need to speak to the doctors and ask them to please put Dads Directives into place and to remove the feeding tube, etc. You and your siblings need to have a sit down with Mom and tell her that the time has come to let Dad go. For too long he has been kept alive artificially and it is just not fair to him to continue like this and let Mom know you are taking over, you love her and you will be with her, but Dad is suffering and we need to let him go, so he can be a peace and rest. I hope she will not fight you on this!
Hospice is no cake walk either, it is very difficult to sit with them and watch them die. It is not easy, you can and should talk to them and tell them you love them and they can go whenever they wish, do not be afraid, we are here with you, etc. My sisters and I stayed with Mom continuously until she died. All medications other than those to keep her comfortable were stopped, no food, no water other than on a sponge to keep her mouth moist. Although I found it difficult the only way I could look at it was that I was carrying out her wishes and her family was waiting for her on the "other side." Whatever you do, do not leave your Mom alone there with you Dad, it could be too much for her.
One night my older sister was having a panic attack and left. She called us and asked us to come down stairs and go have dinner to get out of the hospital a bit. We left and told Mom we would be back soon. When we all returned we were talking to her and rubbing her head and I had forgot to put gloves on so I washed my hands 3 different times and was then standing next to Mom putting my gloves on and talking to her and I saw her breathe and then no breath came, I put my finger on her neck and could feel a very faint beat, I said to my sisters, "You guys, Mom is gone, she has quit breathing." She was gone, but she waited until we came back from dinner together....about 5 minutes.
Even though hospice is rough to watch, I hope when I die if I have to go slowly then I hope my daughter puts me in hospice so I am kept comfortable at least.
God Bless you all!
Call in palliative care team to talk with dad privately and then talk with you and mom. Just cause they talk with you doesn't mean you have to go thru with it and they can work with mom.
Mom is not guardian, legally, but she is the spouse and that may trump you as second on POA depending on how it is written...the attorney who drew it up should be able to explain it it to you and you could confidentially call him and ask.
I know, I let my mom boss my brother and I around like we were children in dads last days and she was exhausted and I wished I had had the guts to step in sooner. I finally did, and we got a nurse in home but dad passed in 24 hrs.
From my experience, go with your instincts and get palliative care or hospice for dad. Mom will resent you at first, but will thank you after a few days when she gets to be a loving wife in his last days vs caregiver.
I see denial regularly in my own Mom who is still very sharp for her age, she still thinks Dad can carry heavy packages... climb ladders.... fix things around the house, etc. Dad is in his 90's, that ship had sailed a few years ago. Neither of them ever think about calling 911 when Dad falls and hits his head, Mom thinks an ice pack and a sandwich will be the cure all.... [sigh]. I know Mom doesn't want to be alone, and that is probably what your Mom is feeling right now so she is clinging to hope for your Dad.
Feeding tubes are generally or relatively contra-indicated in advanced dementia, as the medical literature for this very specific situation indicates they not only fail to improve quality of life they usualy also fail to even prolong it. This is very different from when there are strokes or other causes of dysphagia and the person is cognitive enough to manage or cooperate with management of the tube. Another exception would be if someone feels hungry or thristy (though more typically there is little or no appetite) and cannot eat and drink enough. IV fluids are another option even in that situation and may relieve both hunger and thirst as well. If a J-tube was placed, it means gastric (stomach) feeds were not working, and if a J-tube is not working, there is some kind of GI obstruction and that may also be what is hurting him. It might be good to know what that is, and to help decide whether it can be reasonably be relieved or not.
When you say your mother is is "guardian" do you mean she has gone through a court hearing and been appointed officially to the role of guardian, or that she is his first agent as POA?
Mom should be glad you are the healthcare proxy. That relieves her of more responsibility. It is your decision, not hers.
I am flummoxed by the idea that ANYONE would put in a feeding tube on a person with late-stage Alzheimer's. Yeah, I already know I'm going to get beat up for this post.
Please. Please! Let the poor man go. Just because "we can" doesn't mean "we should". Be strong enough to face off with your mom if that's what you need to do to get him on hospice. Let the doctor know that's what you want privately, and let him introduce it to your mom.
I'm sorry, but this is just so wrong.
Advocate on behalf of your dad. This isn't what he would want.