Moved in to take care of Dad and feeling frustrated

[ScottS985553]

I recently moved in with my Dad to give him 24/7 care. I am recently separated from my spouse, so that in itself is stressful and emotional. Although my Dad is thrilled I am living and caring for him, he is refusing palliative care and has nothing in paper as far as a will, advanced directive, or DNR.

He is a stage 4 prostate cancer, with failing kidneys, atrial fibrillation and chemotherapy has stopped working. pSA climbing rapidly, and myself and 2 brothers are trying to get things in order before he can no longer speak. I cook for him the healthiest food possible but against Dr suggestion against salt, I can’t keep him from it. It’s affecting his BP and his legs are back to being so swollen because the heart can’t keep up. I definitely don’t want to take away his rights to choose what to eat or how to eat it, and I tread carefully and respectfully, but it’s frustrating at times. the upcoming PET scan in a few days will determine what time frame we are looking at. And us kids are in agreement that Hospice will be the next step. How do we convince him that not having things in order and on legal paper will cause so many struggles for us after he’s gone? Just the mention of it makes him shut down, understandably. I don’t want to upset him… any advice? Thank you in advance 

[JessicaP838009]

As well when we had to do the same, we just went ahead and made the substitute changes in the kitchen since we did the shopping. When the changes were grumbled about we had the harder discussion again about if you want to just be able to be comfortable in care and not treated we need to sit down and discuss and put some things in writing. We are otherwise going to assume that we are here to "care" for you and this is what it means. My father in law and mom in law made those choices and did DNA, MOLST, made us HCP and POA to fulfill their wishes. Dad went peacefully the way he wanted after seeing all of the kids June 2021n and we are caring for mom still with Lewy Body Dementia with help of an agency 24/7. They cover 16 of those hours. But everything is documented.

[GailL1]

@ScottS985553 wrote

How do we convince him that not having things in order and on legal paper will cause so many struggles for us after he’s gone? Just the mention of it makes him shut down, understandably. I don’t want to upset him… any advice?

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Why should he care now about how many struggles you and others have after he is gone?  What type of stuff do you think he needs to decide upon NOW ?  

That’s why it is called Advanced Planning - it is not easy to just decide at the last minute when there are other things one may want to be doing.

When a person dies without a will, they are said to have died “intestate.” That person's assets will be passed down to their heirs through what are called “intestate succession” rules - the state controls this line of distribution.  Plenty of people die without all the planned stuff and order.  

I had guardianship over my mother for many, many years - I handled everything but still I could not get her to decide on Living Will stuff - just too much thinking for her about death.  So I said - just write it down.  She did and it said in very primitive writing and words style - 

“ I don’t want any brain operation, I don’t want to be just breathing - if I get to that shape, just let me die in peace”.  ( the spelling wasn’t correct, the penmanship was awful but she signed and dated it -

when that time came shortly before she turned 90 - I handed over that little piece of paper to her doc and we knew exactly what she wanted.

Depending upon the prognosis - and the amount of fight he still wants to do - (and that is HIS decision - NOT yours)  then you can know what type of orders the doc should be working towards.  Maybe your dad should talk to his doc about what he is willing to do and for what purpose.  If he can make that decision.

When my husband was dying - we had a bucket list that he shared with his doc and that was the guidepost for the doc.  So the goal was to keep doing things that prolonged his life for the final wish (walk our daughter down the Marriage isle).  Once the last thing was done on the bucket list (although he still left me with a to-do list ), his doc, per my husbands’ request, stopped all medications and treatments that were extending his life - remaining only on pain medications.  He died 2-weeks later, peacefully, in our home after finishing all his good-byes and telling people he was off to his next great adventure.  

In my Will, I have planned my last wish of (I guess you could call it) nutrients.  ICE CREAM - the more the better - I didn’t pick a flavor.

Now it has all been planned and organized - 

Let him do what he wants in his last days - you and the others can make do and work things out - or maybe you won’t.  

[jonibee · Accepted solution]

You may just have to upset him so he will listen to what you have said here..We plan in life for getting married/having children though sometimes it's not in the order of things. Making major decisions will affect out lives down the line. And tell him he's in control of his life at this point but if comes  to the point that he is unable , others will step in and it may not be what he wanted. So NOW is the time to get your life wishes in order. Once he is in hospice care others will decide for him. And salt is a no no especially for the fluid build up that affects the heart..I have personally seen what it can do to a person when they begin to swell from the ankles up and how the skin gets like tissue paper and begins to deteriotate not a pretty site..wounds do not heal etc. Take charge and tell him because you care and love him he must give this some serious thought so he will be around a little longer if not for you but for himself..My husband had problems with drinking enough water and  the results were not good..Once the systems start to shut down it becomes a no return situation...So you must speak up and speak your mind while he is able to comprehend what you're saying...Did you try a salt substitute like Mrs.Dash that's what they use in the hospital...Read the labels as there are a lot of foods that have salt in them..Good Luck with Dad...

[ScottS985553]

Oh my goodness! Thank you so much for your time and input. As a matter of fact my Aunt suggested MRS Dash as well, I don’t know why I didn’t think of it. Thank you again, and I will approach the conversation in a manner that will still make him feel like it’s His decision, it’s important to him

God Bless

[PrettyinPink16]

Hi Scott, I can feel the pain and fustration in your note.  If it was me I would let him enjoy his last days eating what he wants.  Did anyone have any conversations with your dad about his wishes when he was healthy?  If so you might have to use those.  Does he have a lawyer or best friend he might have confided in?  From reading your note you all will work things out.  I will pray for you all, Blessings and Take care.

[ScottS985553]

Thank you, yes I don’t want to take away his independence or divinity so we will proceed with care, love, respect and dignity. And yes, all will work out I’m sure

God Bless