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brandia Asked November 2014

Is family division ever avoidable?

It seems the more one tries, the more division occurs. My grandfather turned 90 this year. Up until he had seizures in July, he was still driving (which he really shouldn't have been) and living alone (great grand daughter moved in for a place to stay, not caretaking...even though she was great company and he loved it.) Since then, he has not recovered to his previous baseline. Swallow tests showed he was aspirating everything (most likely has been) so they stopped food and water. Feeding tube was put in to give nutrition. He actually agreed (after he disagreed.) By choice, the only two family members that had taken care of him were my brother and I. He did legal and I did medical for over five years now. His daughter, that was never constant in his life allowed him to come over to her house, but that was the extent of responsibility. My dad is passed. My other siblings/cousins either never saw him or only a few times a year. His great grand daughter was a great source of joy and would go to lunch with him.
Once he had seizures and feeding tube, he went to skilled care. Since my brother and I are POAs, it does come down to us, but I was in communication with daughter because I felt it right. During his 100 days of skilled care, opinions were formed that he should be at home. At this point, the view diverges that 1) he can take care of himself at home and 2) he should die with dignity at home. That is confusing... can he care for himself or is he dying? How can they have both views at once? So, we tried to share his actual medical information so they would be informed and either they didn't read it or they did and their idealistic views of elderly at home got the best of them.
The reality is this: his seizures has left his dementia much worse. Yes, he has moments of being him, but he is in no way the same. He is on a feeding tube so he can get nutrition. He did not recognize the tube or that he wasn't eating for a while (now that he does, I do think it's time to consider comfort care.) He isn't permitted to walk on his own bc his walking is so unsafe. Yes, he CAN walk, short distances, but by observation, it is tenuous. He doesn't participate in much at the nursing home. He doesn't watch tv. He chooses to just lay there. I'm told it is common with advancing dementia.
As by the suggestion of his daughter, we had the dept of aging do an assessment. They, with no question, suggested he stay in nursing care. The risk of his safety is too great.
Even with all this evidence that he cannot ACCEPTABLY, take care of himself, some family still thinks he should be home. Here is the kicker... without 24 hour care! His daughter says she is "a phone call away" and his great grand daughter that has had a challenging life up to her 21 years and is in her phase of smoking pot, is supposed to be his primary caretaker? I moved two hours away and the other involved brother works and takes care of grandpa and his mother-in-law. We told those folks that if he went home against medical advice, insurance may stop. No acknowledgement. We said, if we had a solid, written plan of one or two peoole to take on his care full time and was presented to dr, he may release... no plan was even attempted. We asked if they provide regular family volunteers, maybe coukd make a plan, no such luck. Nothing. They weren't there for him all those years, and they aren't there for him when it comes to actual responsibility. It's like they just want him home with no concern for his well being to pacify some image they want to maintain. Many that were not involved for years still haven't been while in nursing care. And with no exaggeration, he gets more visitors, attention and care than he'd get in a month at home, even if he was more mobile.
I do care what others think. I want folks involved for grandpa's sake, but all my wishes won't make it real. Now, having to decide to keep him in nursing care and with the rules of medicaid... things need to be done, the house needs to be resolved and nasty, nasty words come from these mouths, even the great grand daughter. My brother is killing him, we are incompetent, we are profiting. Digusting words. I've come to the point where I react to such foulness, which inflames the situation, but I'm tired of the voluntary ignorance. They dare take away the devoted years I committed to him? How csn anyone with brains and a working heart turn the the ONLY people this man relied on?
Is all this inevidable? Are unhealthy people just going to stay in the cycle of unhealthiness and inevitably try to bring down everyone around them?
I'm not the thick-skinned person, so dealing with all this has been so emotionally challenging.

PrettyGood Dec 2014
to the original poster, you say you have Medical POA, well now is the time to put that in force, and make it clear rest of family, he is going to stay in the nursing home. The financial POA has to comply with the care plan which the Medical POA dictates.

pamstegma Dec 2014
Brandia, you are doing everything right. You ignore the idiot relatives, the same way rock stars ignore the paparazzi. Do you think Jennifer Lawrence loses sleep over what the Inquirer writes about her? Not a chance.

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hobbesmom Dec 2014
In a perfect world and in maybe more enlightened families, I'd say, "Yes! There is hope to mend the family division." That has not been my case even after 5 or so years.

All I can offer is to suggest you do your best. Maybe others won't view it as such. Maybe others did their best but you don't view it their way, either. :: shrugs :: At least you can live with your conscience. Others have given you a lot of good, more detailed advice. Just know, I wish you a peaceful closure.

Countrymouse Dec 2014
What leaps out about these nasty-minded family members is that they are blithely ignorant of your grandfather's reality. What fools. How dare they presume to comment, let alone criticise?

I am so sorry that you find them hurtful. Actually, it is a tribute to a generous nature that you do; and may you never lose that sensibility. But you have every right to be angry with them, and I particularly liked Ba8alou's tart remark that "you can't cure stupid."

There is another saying: "least said, soonest mended." Now this depends on these wretched people's having no authority to make decisions on your grandfather's behalf; but assuming that they haven't, and therefore cannot interfere in any way that would be harmful to him, the best thing you can do is ignore them. Best for you, that is. When people are enjoying a self-righteous frenzy that helpfully also salves their consciences, there is no point in presenting them with a rational rebuttal - it will only aggravate things, because the worse they feel about their own behaviour the more desperately they will try to blame someone else. Continue, if you feel inclined, to send out family circulars providing updates on your grandfather's condition and encouraging visitors (even if more in hope than expectation); but do not dignify their ignorant slander - actually - with a direct response.

It is generally true that most people, when questioned, express a preference to die at home (judging by the statistics there must be quite a lot of rapid changes of heart about that unless the hospitals are sending out kidnappers, but it's a nice thought - when one is not dying). There has been a good deal of tut-tutting about this subject lately, and these rumours catch on. When you add to them people who enjoy the luxury of ignorance - I can almost hear them telling themselves "I prefer to remember him as he was…" - you end up with a heap of sentimental nonsense that paints as villains the people who are battling with practical reality: in this case, you. It disgusts me.

I hope you are able to minimise the family division, and that patient, repeated explanation (ideally in writing because then people can't interrupt) of your grandfather's condition, best interests and personal preferences will quieten if not silence the criticism. Focus on your grandfather instead. Best of luck.

otbreno Dec 2014
I'm in a similar situation, although it's not on a day to day. I know it's always there and will hit hard when my parents are gone. Here's how I deal with it. I was divorced 15 years ago and had to fight for my children's custody against their (lawyer) father. He claimed primary caregiver (he worked 2 jobs, I stayed home with kids). The law puts what's "in the best interest of the child" first at all times. It took me about a year and 4 months to apply that to this situation. When all is said and done, you want to be able to look yourself in the mirror every day for the rest of YOUR life and know in your heart that you did the BEST thing for grandpa. NO REGRETS!!! You can't take responsibility for or control ignorance or selfishness by others. You can only control what YOU can control. That's the decision to do the best thing for grandpa, that's what he trusted you to do FOR him. People operate from a fear base or a love base. You are operating from the love base! That's whats most important. Good Luck!! PS My kids thank me all the time for how I handled it:)

brandia Dec 2014
Txcamper... he's not quite to bedsores yet, because he does get up (when he shouldn't) to brush his teeth and to sit up occasionally. Rationally, yes, having a Plan of Care meeting with the nursing home would inform, but I have no doubt they would have the same viewpoint because they believe the nursing home wants him there for the money. I've told them a couple times they can make a Plan of Care meeting anytime, but none of the naysayers have initiated. It comes down to talk and action. They only talk, talk talk. We take action. Then they talk about how crappy our actions are. No sense. No sense at all.

brandia Dec 2014
Thank you for taking the time to read and for all your repsonses. I feel confident in my decisions, but sometimes I do say to myself, "Is it me??" It sounds funny to say that your responses help reinforce... no it most definitely isn't me. I, wholeheartedly, agree with Christine that dying with dignity has nothing to do with being at home where he will continue to be ignored. Dignity seems to be more related to how well he is cared for and the family that chooses to support him by visits. I can't even count how many times I've said, 'Just go visit him!"
Ultimately, RocknRobin summed it up. "Realize that you are in a no win situation. Grandpa comes first. They can all take a hike."
I do need to remember this. I want to value others concerns and opinions, but when they go against all medical advice and the safety of my grandfather, then letting go is the answer. I reached out because I've never dealt with any of this before and "that side" of the family have been notorious for discord. Thank you again for taking the time to respond.
I may just go through and read them all again!

xxxxxxxx Dec 2014
Feeding tubes have to kept clean. He will have to be turned every two hours to keep bedsores from forming. He will have to have toileting taken care of every few hours. There are many other things that will have to be done to care for him. The people who want him to be at home, will they be able to do these things for him? If not then people will have to be hired and paid. There is cost in taking care of the aged, whether in a nursing home, or at home. Rocknrobin gave a good response. Have someone from the skilled care facility talk honestly to the ones who think that home care is possible. They can explain in ways that you cannot, and people will sometimes listen to an uninvolved third party. A demonstration of homecare may make people realize what is involved. If they are shown how to clean the feeding tube, to prevent infection, how to maneuver the loved one in the bed while sheets and bedclothes are changed, how bed baths are given, how to do the exercises in the bed so that bowels will continue to function, etc., etc., ETC. There is so much more than people think about. I wish you good luck with your aunt and niece. They probably just need unemotional education to come around. It took me so long to write this that Christine and I pretty much say the same thing. I got distracted while answering.

Christine73 Dec 2014
I'm so sorry you are going through this. Perhaps they would feel better if they visited the home and saw the care he gets. It does sound like they are either in denial or they want to be able to get his assets, which may not be possible if he stays in the nursing home. I would put together a brief, to-the-point clinical assessment, along with doctors recommendations, and have it ready if anyone challenges you. Explain that you are following the standard of care for his condition. Because he has dementia and the feeding tube he will absolutely get better care at the facility. If they want him to be "comfortable" or have more "dignity," they should visit every day. That's what will help him at this point.

ferris1 Dec 2014
At 90 with all his health issues, I agree he should stay in the nursing facility where he can be cared for by professionals. Family lets their emotions get involved and when that happens all reason goes out the window. Do the best you can, but leave your father in the nursing home until his death. He will die with dignity because he is being taken care of by professionals who know how to manage all his medical issues.

LOUISE44 Dec 2014
Step up and make the right decision, for him and for you and move on. So very sad the family cannot help but it happens - sounds like they are delusional and in denial of the actual facts and not willing to work with you to make a plan. Your responsibility to your LO is getting him best care based on your knowledge. You have the POA you do not need their blessing and you sure don't need their abusive behavior.

Sunny5 Dec 2014
I didn't want my dad to go in nursing home and he wouldn't live with us he says we have to live with him we have our own homes . So the next best thing in out town I toured some senior group homes and found the best one 3000.00 for private or 2500.00 to share a room home environment home cooked meals pets 24 hour care home away from home house doctor the owner lives upstairs and her residence live on the first floor he has everything he needs instead of nursing home if I want to Take him out somewhere we can

Sueber48 Dec 2014
His safety is above everything else.

BarbBrooklyn Dec 2014
You can't fix stupid. I'm sorry you care so deeply about what these people think of you. They are dumb and living in the lala land of the Walton's. YOU might benefit from finding a therapist who can help you learn to value your worth.

PeaceCorps1 Dec 2014
Your last sentence... you are going to emotionally suffer during this time. Few of your decisions will be rational. This is a HARD time.

Try to not make any deep legal decisions now.

I still recall the H*LL this put on me and it was three years ago that I was in the midst of my similar situation.

Rocknrobin Nov 2014
Which would be easier for you? Leaving him in skilled where he is taken care of 24/7 or at home where family in not prepared to step up to the plate. Professionals have weighed in that he should stay at the skilled facility. They are the opinions that count. His needs are for 24/7 care and that's it. End of story. How could anyone in their right mind take him home with hit and miss people looking in on him. If one of them is committed to take on the whole thing, good. Until then, keep him where he is. The great great granddaughter is concerned you are going to sell her home out from under her. If she is still there, she needs to seek other arrangements. You couldn't be profiting with Medicaid. Tell them if they want to look at his financial records, you will oblige them. Realize that you are in a no win situation. Grandpa comes first. They can all take a hike. KNOW that you are acting in his best interest. Ignore the rest. Turn a deaf ear. Toughen up and keep on keeping! You can to this.

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