My Dad

[journey11]

Thanks guys. I'm sorry I had to vent my frustrations. I've not posted most of what has been going on lately because I haven't wanted to dwell on it or be negative here, but this thing really got to me. I appreciate all of your thoughts and perspectives on the matter. It does help me tremendously.

@so lucky - He decided not to do the advance directive, couldn't think too hard on it really, I guess. With the medical power of attorney already in place, I told him awhile back that I do know how he feels about interventions that would keep him alive artificially and I assured him that I wouldn't put him through any of that, given that this is a terminal illness anyway. He said he trusted me to make those decisions and felt it was best to leave it open to whatever the situation would be.

Thing that bothers me most about all of this are the what-ifs. Without the chemo/radiation, he will be gone in 6 months. With it, he may get 1-2 years before the cancer comes back. There is also news of a very promising clinical trial using a modified polio virus which is being done at Duke University where they have 4 people in remission for over 3 years now--something totally unheard of with this cancer. And may likely help people with many other types of cancer too. When the tumor eventually comes back after chemo, he would likely be eligible for the study, and it may even be an FDA approved treatment before then, as it is moving along quickly. It's very hard for me to just give up hope. I would always wonder if he could have had a chance.

@Nyboy - The thing we learned in all of this was that you cannot make anyone go to the ER if they are able to speak for themselves (even if confused/impaired to some degree) and they decide to refuse treatment. He would have to be out cold for the paramedics to take him. He told me while he was in the hospital that he had known for quite some time that something was wrong and that it wasn't the Parkinson's advancing. He chose to stick his head in the sand and go into auto-pilot. Had my grandmother not put a bounty out on his head and had he not gotten into my car that night, we still couldn't have gotten him treatment. He would have continued on and tried to drive home or back to work the next day until he eventually had a wreck on interstate. It would have been so much more terrible that way and could have even killed someone else. It makes me shudder to think of it.

 

[so lucky]

@journey11, more to you. This is heartbreaking. We'll keep our fingers crossed that the appointment on Thursday is positive. Like you said, maybe some clot buster drug and home again. Or maybe the doc will be able to connect with him.

 

[Smart Red]

An option might be to write a letter stating your concerns that Dad is depressed. Have the letter sent (or given to someone at check in) to the doctor before the appointment. Then there should be little reason for you to have the discussion in front of him. The doctor will -- or should -- ask Dad the right questions.

"I understand that he is in despair, but ultimately he is being selfish and stubborn, lashing out at the ones who love him and are trying to help him." Journey11

You see it as being selfish. He might see it as being considerate of you -- not having you all go through a long period of illness with him.

There are times my DH has stated he wanted to die. His frustration at his inabilities with this diagnosis gets too much to handle sometimes. Being blessed with a healthy body and a failing mind isn't a good thing, but much better than a healthy mind and a failing body.

Yes, there comes a time when many older people decide they don't want to fight any longer. They are tired and ready to let go. It's hard on us, their children, spouses, and loved ones, but death is a part of life. When that time comes, respecting their wishes is something we can do to make the end easier on them and ultimately on ourselves.

 

[thistlebloom]

So sorry for all of this hard stuff you're going through Amanda.
Definitely continuing on in prayer for you and your dad.

I don't know if we can ever be positive about the choices we make at the time we make them. It can be so confusing and emotional, and we only see more clearly in hindsight.

My mom had a six month to a year diagnosis. She figured on a year, but passed away 6 months after her diagnosis. She didn't prepare a will of any sort. She and dad always figured she would outlive him. Dad didn't make a will either.

I know they didn't intend for us to have to go through such a mess and misery, but it sure would have been simpler if their wishes had been clearly communicated.

I hope your dad finds the will to carry on as long as possible, and decides to just be a huge blessing to everybody he knows and loves while he has the grace of extended time.

Hang in there sweetie, you aren't carrying the burden all alone.

 

[seedcorn]

I won't tell you anything except, allow your loved one to live out their life like you want your children to allow you to live out your last days.

Losing parent is the second worst experience you will undergo. You just get through it.

 

[digitS']

I was thinking recently about what it means when people tell us to "take care." I posted something about the idea last fall but it drifted off a bit, as TEG threads do.

Really, any thoughts about old people taking care brings me to memories about my uncle. He never, ever took care of himself, I suspect. He went from his mother and older sisters taking care of him, to the institutional setting of the military, to the most solicitous of women taking care of him, back to the military, back to wife, to doing nothing. Nothing except behavior that was self-harming. Lifetime habits don't necessarily end with old age or ill health.

So, what do people mean when they tell me to "take care?" I figure they mean to have healthful food to eat, keep myself, clothes and environment clean and comfortable ... doesn't seem like asking much.

I nearly posted on my or @Nyboy 's exercise thread a silly video of a guy falling right over as he started some athletic event. It was meaningful to me because I am awkward with nerve damage and in danger of falling over, all too often - including when I'm trying to get some exercise.

Food preparation can be interesting, or not. Cleaning is somewhat compulsive but ... these things get tedious. Imagine if we can't do much else ... over years, decades, a lifetime. And, if caretaking becomes very awkward and too involved to be interesting, what then?

Steve

 

[baymule]

Instead of hauling him to a lawyer, get a paper tablet, pen, and sit with your Dad. Ask him what he wants to do with his estate. Does he want specific things to go to certain people? Split everything evenly? Sell everything and split the money? write down his wishes. Tell him that you will take it a lawyer to get it drawn up and when the paper work is done, you will take him to the office to sign it. Insist that it is not fair to you and your siblings to fight the state and probate court and the mess it will be. Tell him you will do exactly what he wants and do all the leg work, but he has to go to the lawyer's office to sign it. I had to help my Mom with her estate.

 

[Smart Red]

It may be that with two witnesses (neighbors not mentioned in the will) the will can be signed at home. Also possible that the attorney could drop by on his way to or from somewhere if Dad is living somewhere between to and from.

 

[seedcorn]

I know nothing about his wishes but my MIL didn't want to deal with family dynamics and left things 50:50. Sounds great except personal things not specified and (you guessed it) possession is 90% of ownership. Long story to say, let them die in peace and deal with mess afterwards.

 

[Smart Red]

Seedcorn, it is unfortunate that things worked out that way for you and yours, but @journey11 still has time to alleviate some of the problems you had -- if Dad wants it done. Now is the time, if possible, to deal with the situation and avoid a possible mess afterwards.

My aunt and my MIL each brought the family in and went through possessions gifting them in turn to their children. Anything not gifted was sold and the money shared as per the will. I realize that not all folks would be comfortable doing that, but it's worth a try and now is the best time possible.