Dad's in late stage Alzheimer's, a colostomy and a j tube internal feeding. He needs Hospice but Mom's his guardian. Any advice?

When you say your mother is not in the right state of mind, do you mean that she has dementia? Or that she's just not making good decisions? Have to doctor talk to her when s/he comes this morning. I'm so sorry that you're going through this. If he has advance directives, the doctor should be attending to that; why did they do a feeding tube? Isn't that artificially prolonging? Talk to the doctor; let us know what happens. good thoughts!

no ma doesnt have dementia, she just is not making the right decisions.. she also has become very mean to me and constantly starting arguements with me, she may be starting dementia now that i think about it. It was her choice to have the feeding tube placed, due to her getting aggrivated about feeding him, i have it on my phone taped her yelling at him,,,its gutt wrenching. The doc i believe is going to try and tell her again his quality of life is just not there, i least i hope he tells her. yes, the feeding tube is artificial, i was totally against it, he was still able to eat a little, but just refused, and she could not handle it, so she put it all on my back. My children suffered from it, due to me caring for dad all the time, they are adults now, but have felt rejected from me cause dad needs so much care - I have a twin who lives 5 minutes away, and is a cena, but wont come around because she feels he already is dead as of a year ago when he started going down hill, and my brother only comes around when he needs something.. it's a sad situation,, i will let u know what the doc says.. thank u for your response... ba8alou

A feeding tube in contraindicated if the person has papers stating that they do not want any life prolonging measures taken. A j-tube is a life prolonging measure.

Advocate on behalf of your dad. This isn't what he would want.

Twinlaura I am SO sorry you are having to go through this with such little support. Your mom just can't handle the decisions that have to be made now for your dad. I agree with Eyerishlass, do what you can for your dad. If he has written advance directives, get those out and show them to the doctor. We're here for you - you don't want to let this take you down too. Please keep us posted...you are doing the right thing for your dad...I'm sorry you aren't getting support from your siblings.

How did he get a feeding tube to start with? Lord in holy heaven.

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.

i totally agree maggie, my made the decision do to her get all worked up and yelling a him to eat, so she dicided to put a feeding tube in so the responsibility does not have to fall on her... She is so selfish, the man has been thru h*ll.

eyerishlash and maggie if i show the doc the advanced directive, will it change the situation. It definetely states NO MEANS of prolonged life due to artificial means. i need to know.. she is the guardian, but i am the guardian of his health in his will.. plz let me know aspa thank you, I can't watch him suffer anylonger, it is killing me...

I hope with the help of the doctor, hospice can be brought in.

OF COURSE the doctor and all medical staff Dad comes in contact with should know the contents of his healthcare directive. If not, what was the purpose of creating one? If the directive names you and the first agent, that is, the person who may speak on his behalf, then that is your responsibility.

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.

no she didnt got to court, they made the will before he was diagnosed. she is the first agent as POA, i am the second, but it states i am to make the medical decisions. I will bring the will to the hospital today without her knowing, and show the doctors so they have it on file. I know i will catch h*ll for it, but, if i can give him is last wish, i feel i have done my job as a good daughter. i asked her if he has an advanced directive because the hospital wants a copy of it, and she said yes, but she doesnt want the hospital to see it....I am 49 years old and she has always bossed me around, but when it comes to my dad, this man would do anything for anyone. The kindest, loving man i know.....wish me luck,, thanks for listening to me vent,,,i truly appreciate everyone's comments...xoxo

I hope the medical staff (& I believe they will) will agree that while your mother is his guardian you have his medical poa! Please continue to fight for him. (My sister and I found out too late to do anything that dad wanted to be cremated but mom never told us so he was buried. We checked into correcting the problem but it still needs moms approval.)

Laura, if you have medical POA, and it sounds like you do, a visit with the social worker and then the attending physician in charge should do the trick. Guardians and POAs can be removed if there is evidence they have not done their duty to the person, and the refusal to provide the advance directive plus the verbal abuse about his eating could be seen as that. If they are sincerely trying to do their duties but unable to continue for cognitive or health reasons, physical or mental, this must be documented and then the alternate takes over. They can even sign a notarized statement that they resign as POA if they are willing. It sounds very much like you are feeling empowered to do the right thing and just need the right staff in your corner.

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.

Bring the Will. She is not a Guardian unless a Judge appointed her. Read the documents, especially the part about "unable to serve". You are right, it is time for Hospice. She just can't do it.

Wishing you and your family good outcomes and healing.

twinlaura, sounds like your Mom could be in denial about your Dad's condition. I can't imagine what you are going through and how you want your Dad to be comfortable at this stage. You must be physically and mentally exhausted.

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.

AGREE with you!! Do what is in dad's best interest and don't look back. Take the AMD a and POA with you to the hospital and enlist drs and care teams help in carrying out dads wishes and helping your mom accept dads wishes.

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.

Laura, I hope this way of looking at it with help: while of course you don't want to upset your mother, your primary responsibility is to your father. You are his medical advocate, and that isn't just a filial duty but a legal one. You have no choice but to set aside your mother's feelings, just for now, and focus on what you truly believe are your father's best interests. No choice. Act as though he is a patient, not your father, and it'll be easier.

Twinlaura: Oh my I do know what you are going through. My mother just died on September 17th and was buried about 1 1/2 wks ago.

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!

twinlaura, this is a difficult and painful situation for you. Hugs for being the responsible, loving daughter doing what your dad wants, even thru your own pain and sadness. I hope that showing the medical staff your dad's written wishes will result in your dad's wishes being carried out.

thank you all for the advice... the hospital is going to send him home, with massive leakaging around his J Tube site. They said we have to put up with it...Another problem I by myself have to deal with........I am going to tell his visiting doctor and hopeful get my sister and brother on board, and tell him,, he goes on hospice, or i leave......I just cant do this anymore...........

Laura, this sounds insane. I just can't see how you on your own are supposed to provide adequate nursing care for him? Who is giving consent to his discharge from hospital? - because they can't send him anywhere unless someone is accepting responsibility for his care? You poor thing. How is he in himself?

Twinlaura, sounds ridiculous, you poor thing!!! And dad too. Call in hospice a sap and tell your family members it is your way or the highway. This is torture for the poor man. I would personally complain to his physician and I hope he gave you a good explanation for doing this procedure or going against your mediacal POA judgement and AMD.

dad is on his way home shortly by ambulance. They did nothing for him at the hospital. He is still leaking stomach acid and bile, and it just does not make sense to me at all...........I am so angry!!

Who signed accepting discharge? Who said "you have to put up with it?" You need to file a complaint with Dept of Health and Human Services.

I'm guessing Laura's mother agreed to the discharge; and the hospital person got narky about it when Laura pointed out the obvious impracticalities. Laura, how are you going to manage? Is there anyone around who can help?

It's time to call Hospice if there is nothing to be done, according to the hospital. Let your siblings argue with the hospital if they think there is more to be done that is curative. Laura, you're going to have to stand up for what your dad wants and it's not going to be eady. But it will allow you to sleep better at night.