A Letter to Neale

Reader Question:

dear neale…

please respond to my family asap. we are becoming divided re: the care, comfort & well-being of our 89-year-old mother in a nursing home. she is very ill & has been for a very long time w/ advanced Alzheimers & and many other medical aliments - but has gotten progressively worse.

she has just had her toe amputated and has contracted aspirating pneumonia in the hospital. now, back at the nursing home - we have been 'told' not to give her liquids (esp water) w/ a straw, only a spoon
(and thickened). mom has had an aversion to utensils & had been taking very little (if any) food as a result. a straw is the only way she takes any sustenance & not very much of it this way.

the nursing home has 'battled' us consistently w/policy, rules & regulations which we feel are compromising our mother's well-being. my father is even scared to get in 'trouble' if we don't do things 'their' way. we don't even have any communication w/ her doctor & care plans & meds have been ordered & changed w/out our knowledge or even 1st being consulted.

now, some of us want to remove all meds & some don't & the family is becoming divided. most of us feel she should have whatever she wants, whatever way she takes it, whenever she wants it. according to 'their' rules - when mom wakes up & I am there & want to give her water - i can't – because she is on 'their choking list' & we must be in the dining room in front of nurses & staff. so we are supposed to get her up & dressed & all, to the dining room or call & wait for someone to come to give her water? her tongue is shriveled up, her lips are stuck together & i can't give my mother water?

mom had been in mental anguish for the longest time but now has a calm about her, even though she is mostly unresponsive. her 'time' may be coming soon but she has clung to this life w/ an amazing resilience. her little body is so frail. it has been so hard & sad to witness her life going on like this. we just want her to be happy & give her whatever she may need, but we all can't agree on what is best for her.

i have asked God for help but have been unable to come up w/ the 'right' course of action. we have sought help from hospice, the nursing home, priests, friends, family council, the media & advocate groups. but we can't come to any conclusions or agreement on what is best for our mother.

please give us your input.

thank you, neale!

with much fondness - tony jr.

Neale Responds

Dear Tony,

I must be old fashioned, but I can tell you that if I were the husband of that lady I would want no one deciding what is best for her but me...she and I were there before anyone else existed. We began the journey together and we end the journey together, and nothing and no one comes between us, not even our own children, who we brought into this world, by the way...

I would say to my children, “Excuse me, but even before you were, I was...”

So I guess what I am saying here is, unless there is some mental failing on his part, your Mother’s husband should be the one making these decisions—whether you children like what he is deciding or not. This is not a “family decision,” this is a husband and life partner’s decision.

You have not said in your note to me that your Father has diminished mental capacities...only that he is “scared” to “get in trouble” if things are not done the way the nursing home wants them done. That bit of apprehension does not disqualify your Dad from making the major decisions regarding his wife and your Mother, Tony, unless I live in another world...

Give your Father his due and stop complicating things for him. Support him in whatever decisions he makes. That is the way to make it easier for him—and, incidentally, for all the children, too. You can disagree with your Father, but he is still your Father—and, perhaps more significantly, the husband and life partner of the woman we are talking about here. When she was younger and more herself, to whom would your mother, herself, turn for advice?

Have I missed something?

Is there something here that you are not telling me, such as, “My mother hated my father and would never ask him for the time of day, much less what to do now..."

From a spiritual point of view, there is no “right” and “wrong” here...so if you are looking for simple advice, the only counsel I can give you is...if your mother herself is now at peace, with whatEVER is going on, why are you allowing yourself to become so agitated? And if you think that she is suffering so (even though she apparently has no experience of it—which, by the way, means that she is not), then all the children may want to pitch in and either get her a private nurse or do whatever else is necessary to give her better care than you feel she is receiving where she now resides.

I am puzzled as to how it can be that you have no contact with her doctor. Does he practice in another state? On the moon? From an offshore tax shelter? What stops you children and your Dad from simply making a joint appointment and all going over to see him at his office to discuss your Mother’s meds and other aspects of her care? Does he refuse to see you? Does he cancel your appointments? Does he evade you in the hallways? Has this man been reported to the County Medical Society and the AMA? Or...could the problem be on your family's end, do you think?

Anyway, Tony, from the who-says-that-I-know-anything deptartment, those are my observations. I send you my best thoughts during what I know is a challenging time for you and your family. Send up a prayer to God, Tony. A simple one. "Please, dear God, help my mother as she makes her final journey Home." Then be at peace, and rest your mind if you can. I know this time is not easy.

Love,

[Editor’s Note: Tony let us know that his mother has made her transition. We send our blessings to her and to all of Tony’s family.]