Father Stopped Eating To End Life

Malka

My father is trying to kill himself by stopping eating. He told me this today in a rare moment of clarity. His eating has slowed down greatly since the uti and catheter. I thought  it is part of the disease. His aide pushes him to eat and says he has to eat to get strong and live. And he doesn’t want to. I wish I could help him. What do I do?

sandwichone123

Malka, this can be seen as an ethical dilemma. On one side, we support autonomy, the right of a person to live their own live, make their own choices. On the other side, most of us see life as an independent good, even if there is a lot of constraint and suffering. It sounds like your loved one has decided that the ability to decide for himself outweighs the good that life is providing, and that they don't think that's likely to change. They may be having these thoughts on a gut level, rather than with verbal reasoning, but there you go. Families, on the other hand, tend to see life as the stronger good, even if there is a lot of suffering involved.

I think the best way to help him is by respecting him, even if you still want him to eat. Are there other ways you could try to support autonomy and the ability to choose his own activities, or is this really the only thing he still has control of?

ButterflyWings

Malka, I am on the side of...if it were me, I would not want to be overruled and forced to eat. Sandwichone laid it out very well. Not everyone feels this way about the issue, and both perspectives can be "right" at different times.  But it is his body and his life, even if he has dementia. What are your feelings about his decision?

Does his aide know your dad has a terminal disease? (the worst possible disease in my opinion; it is horrible.) Because, in a way, what she is saying is he has to eat in order to die slower, which actually means suffering longer. He won't get well I'm sorry to say, and that loss is devastating. But do you know what I mean? It is hard to know what to do. As we speak, I am preparing myself for letting go of my DH when the time comes as it almost did accidentally today. 

If I were you, I would support your dad's choice and honor his wishes. Make food easily available and appealing, maybe offer it a couple of times a day, but don't push him nor feel badly if he doesn't eat it. Water for hydration and maybe find out what else should be done at end of life to make him as comfortable as possible. Have you all had him evaluated for hospice? They are focused on comfort care and have social workers and all professionals trained to deal with these issues.

Michael Ellenbogen

The first question I have is how long ago did he have the uti and catheter. Is this a temporary condition and if so does he know that and would that change his mind in any way? If not let him go and insure he is kept as comfortable as possible with all of the thirst kits and other things avail be to make him as peaceful as possible.

Jo C.

Malka, I am so very sorry.  For me, how to approach this depends on variables; you may have other thoughts or approach.  I wonder if your father has Hospice service as yet, and if not, this may be something of value for both of you.

Since this is a new dynamic of abrupt onset, first thing I would want to do is to have his meds checked; look up all side effects, especially any new or newly increased ones including any antibiotics, (which also carry a significant set of possible effects, some of which effect thinking and mood.) 

If he had been usually fairly well and leading a decent quality of life until his UTI and voiding issues, then I would want to assess an abrupt onset of depression which may be temporary and treatable.  (Did the doctor prescribe Flomax for his urinary issue?)

Finally, I would assess the possibility of delusional thinking.

After assessing all the external factors, if it is truly a wish to leave, then I would honor his wishes.  If he eats or drinks now and then, that would be his decision; I would provide the access to drink and food whether solid or liquid, but would not push him.   As Michael said, I would make every attempt to make him as comfortable as possible while honoring his decision.  For me, getting Hospice on board would be a priority.

It must be deeply conflciting with this happening.  I so hope that you will find support and peace with whatever path is taken.  If you wish to speak to a professional about this especially regarding your feelings, you can make a call to the Alzheimer's 24 Hour Helpline at (800) 272-3900 and ask to be transferred to a Care Consultant.   There are no fees for this service. Consultants are highly educated Social Workers who specialize in dementia and family dynamics. They are very supportive for us and can often assist us in our problem solving and planning.

From one daughter to another, I send warmest thoughts your way,

J.

Malka

Hi,

He still has the catheter in and will until his doctor appointment on June 2nd. Then they will fill up his bladder again and see if he can urinate. If not, then there is a choice to make. There is a procedure they can give him, but we discussed it and he doesn't want any procedures. He can live with the catheter. It doesn't seem to bother him. I try to stress that he doesn't have to deal with going to the bathroom. Neither is a great choice. Also, the UTI is gone.

Tonight,, though he must have forgotten he was not eating because he did have food. I think he forgets what he has decided. I know he has lost 5 pounds in a month. To me that is a lot.

I don't know what to do about hospice. Maybe since he has had COVID, and know these problems they will accept him. I really feel at a total loss and lost.

Stuck in the middle

Malka, I think 5 pounds a month is inconsistent with starvation.  He has to be eating part of the time or he would lose more than that, even though he is quite sedentary.  He probably meant what he said at the time he said it, but I don't think he is actually carrying it out.

I think in your place I would definitely pursue hospice to make him as comfortable as possible.  Hospice was a blessing to my mother at the end of her life.  It can't hurt to ask.

I know this is stressful.  I didn't realize how much my mother's illness affected me until she passed and my health improved.  Please try to accept the things you cannot change, and take care of yourself.

Jo C.

It sounds as though this was not as complex a decision for your father as it may first have sounded which in its own way, must be rather a relief.  I am sorry for the distress you are feeling, it really is a difficult point to find oneself at.  

It can be hard to make a conscious decision to begin Hospice services.  When I did that for my own LO, emotionally I felt horrible, as though I was doing something wrong even though logically I knew it was the best decision. 

Hospice purpose is to help a person have as good a quality of life as possible and they are also good support for the caregiver and family.  One can have an assessment done at which point if he is considered a candidate for their services, you can make the decision whether or not you wish to have their services start then or whether to wait if you are not comfortable.

It will be what is best for your father and for you.  There is no rush for this, it is all on your time table.

If you are not ready for Hospice at this point in time, it may be helpful to contact Hospice  and ask to speak to the supervising RN to discuss their approach to care and their services, that may help to put a better frame around making such a decision.

Let us know how it is going and how you are, we care.

J.

MN Chickadee

Being that he has Alzheimers you may not be able to involve him in decision making. He may say he does or does not want certain care or to continue to live but he may not be thinking clearly due to the brain damage which is why you have to do it for him. Obviously you cannot force him to eat, you can only present food he likes (and if it's sweets or  junk food I wouldn't worry too much) and try to reassure him and validate his feelings. He may not understand the prostate stuff and be able to participate in that decision making. If the procedure involves anesthesia I would be wary because it can make dementia much worse. My father (the parent without dementia) had a catheter for a while recently and it significantly affected his quality of life. He was demoralized and hated having it in, hated taking it around with him everywhere and the whole thing was hard on him. He was like a new man when it came out. He also didn't sleep great with it in as it is not the best sensation and affects rolling over and whatnot. I would wait and see how the removal goes before deciding if this is your dad's new baseline. He may not have the words to describe how he is feeling so saying he wants to die is how he expresses his feelings. 

I believe you had hospice evaluate him a while ago. It is perfectly reasonable and expected to stay in touch with them when things change. They usually track people once they are on the radar and then can get them accepted quickly once they qualify. It sounds like he may have had enough changes in the last few weeks he would qualify now. I know it is difficult to accept this terminal disease. The decision making is never easy or obvious. We just have to do the best we can. 

Olly_Bake

If just putting it out in front of him doesn’t work, I wonder if eating something delicious and new in front of him would inspire. I too don’t deny food options even if it means a bit of junk.  Slice of cake with most of the icing removed or a couple of home baked cookies. Can't have much because of diabetes.

When mom was living, we found out that Metformin was the cause of her appetite loss. And a weird thing now that I’m talking about meds. Dad’s old urologist had him on flomax but the new one changed it to finesteride. Dad instantly became an emotional wreck questioning who loves him and another time burst out crying from out of the blue. Immediately requested to go back flomax. My DH is also on flomax.

If you don’t mind answering, is the procedure the urologist speaking of called transurethral resection (turp)? If so, my dad has had this procedure twice in his older age with anesthesia. Thankfully both times he came out okay and was relieve urinary wise. Dad has never been a fan of catheters either and always yanked them out.

What do you mean, you don’t know what to do about hospice? If you are not ready, do you have a primary doctor that will help you take a palliative or hospice approach? I will be talking to my dad’s primary next week to help me make more decisions. He was very good with mom and dad. He takes the palliative approach with his elders.