Caring for Elderly Parents

[paultuttle]

Well, it's finally arrived: Mom asked Dad yesterday to tell her father (dead since 1986) to come in from the fields because it was time to have lunch.

Dad's a bit shaken up, psychologically speaking, because Mom's physical and mental condition is going downhill faster than he expected (or was ready for, frankly). He said he told her that her father had been dead since 1986, but that it didn't seem to compute in the moment.

So I let him know that he's made the best decisions possible for Mom's care and that she's lived a LOT longer than her pediatricians and cardiac-care specialists at Duke had thought possible, back in the 1940s, when they'd found she'd been born with a closed heart valve and only pinpricks of holes surrounding that valve to help her heart pump blood around her body (the reason for her being on blood thinner her entire life; the only other option would have been open-heart surgery, but it didn't even have as much as 10% success rate back then, not for children--the techniques were still too new, and recovery still too fraught with the possibility of severe infection and death).

And I reminded him that she's had a long and full life, and that he's contributed greatly to that. (She still lights up whenever he enters the room, just as she did when they were first dating.)

What I said helped a little, he told me. He added that at least she still knows who he is and who her children are, but that it's still hard to accept because her lapses into a different world/incoherence/lack of cognition are so unexpected and her times of being "alert" and "present" are so variable.

I'm going to have to step up and offer him considerable encouragement and psychological support (yes, you have people who love you; yes, you're making the right decisions; yes, it's OK to grieve Mom's mental passing before her body dies) as Mom's condition deteriorates. Two of my three older brothers will also need to call and express support more often; I'll engineer that as well.

Thanks again for being listening ears and helpful advice-givers.

[paultuttle]

Eventually (as I did) you will outlive all of this and as I did... move on?

"Moving on" is one thing; doing something after is another.  What are one's duties, post mortem, I wonder?

Both mine are gone; both of their ashes--I sort of blush to say this--are on a shelf in the garage (the ashes include those of a favorite dog, intermixed!).  To be frank, I don't really care what becomes of them (two, plus dog).  They are gone; I'm not.  When I join them, I'm indifferent as to what's next.  Should I tell my executors the tulips in the back yard need some bone meal?  Arf!

Juvenal, I've been thinking about how to respond to this, and my overwhelming emotion is amusement at your sublime irreverence and practicality. (I think we're very much alike, in that regard.)

That said, grief is a process, and I've just entered mine. So yes, I'm expecting to feel as you do, after I stop wallowing in mine, but--for right now--I'm going to go ahead and wallow, in the perhaps-misguided, perhaps-accurate feeling that if I immerse myself in it, the worst of it will be over faster.

Or, at least, that's what I hope.

Beyond that, of course, will come acceptance and the memory of different small things--like, for instance, late at night, when the entire house was quiet, you could hear Mom setting her alarm for the coming morning, using that flat, (fake) wood and plastic, digital-numeral-faced GE alarm clock that seemingly everyone had bought from Sears or K-Mart, saying very quietly to herself, "On... Off... Wake to music."

So I guess I'm doing the same thing, in some ways--setting my alarm so I'll be ready. Thanks, Juvenal, for reminding me that this is a rite of passage and that there's an exit up ahead. A bit too far for me to see right now, but still, up ahead.

[Juvenal]

Well, it's finally arrived: Mom asked Dad yesterday to tell her father (dead since 1986) to come in from the fields because it was time to have lunch.

Dad's a bit shaken up, psychologically speaking, because Mom's physical and mental condition is going downhill faster than he expected (or was ready for, frankly). He said he told her that her father had been dead since 1986, but that it didn't seem to compute in the moment.

So I let him know that he's made the best decisions possible for Mom's care and that she's lived a LOT longer than her pediatricians and cardiac-care specialists at Duke had thought possible, back in the 1940s, when they'd found she'd been born with a closed heart valve and only pinpricks of holes surrounding that valve to help her heart pump blood around her body (the reason for her being on blood thinner her entire life; the only other option would have been open-heart surgery, but it didn't even have as much as 10% success rate back then, not for children--the techniques were still too new, and recovery still too fraught with the possibility of severe infection and death).

And I reminded him that she's had a long and full life, and that he's contributed greatly to that. (She still lights up whenever he enters the room, just as she did when they were first dating.)

What I said helped a little, he told me. He added that at least she still knows who he is and who her children are, but that it's still hard to accept because her lapses into a different world/incoherence/lack of cognition are so unexpected and her times of being "alert" and "present" are so variable.

I'm going to have to step up and offer him considerable encouragement and psychological support (yes, you have people who love you; yes, you're making the right decisions; yes, it's OK to grieve Mom's mental passing before her body dies) as Mom's condition deteriorates. Two of my three older brothers will also need to call and express support more often; I'll engineer that as well.

Thanks again for being listening ears and helpful advice-givers.

A new world, but not forever.

[poiuy]

Juvenal, I've been thinking about how to respond to this, and my overwhelming emotion is amusement at your sublime irreverence and practicality. (I think we're very much alike, in that regard.)

That said, grief is a process, and I've just entered mine. So yes, I'm expecting to feel as you do, after I stop wallowing in mine, but--for right now--I'm going to go ahead and wallow, in the perhaps-misguided, perhaps-accurate feeling that if I immerse myself in it, the worst of it will be over faster.

Or, at least, that's what I hope.

Beyond that, of course, will come acceptance and the memory of different small things--like, for instance, late at night, when the entire house was quiet, you could hear Mom setting her alarm for the coming morning, using that flat, (fake) wood and plastic, digital-numeral-faced GE alarm clock that seemingly everyone had bought from Sears or K-Mart, saying very quietly to herself, "On... Off... Wake to music."

So I guess I'm doing the same thing, in some ways--setting my alarm so I'll be ready. Thanks, Juvenal, for reminding me that this is a rite of passage and that there's an exit up ahead. A bit too far for me to see right now, but still, up ahead.

My thoughts are with you through this journey @paultuttle.  We went through / are going through very similar with my parents, one of whom departed last year in like circumstances and the other may be on that journey too. Your loving observation of your mother's small rituals, your reassurances to your father, and analogy for your anticipatory grief are beautiful.  Among other comforts you can share with your parents is that they have raised at least one child who is a loving, caring, and good person.

It's indeed hard when someone's cognitive bulb is flickering (rather than fully off), so it's not clear which state one is facing at any moment. It's a learning curve for the caregivers, but the simplest strategy is validation of whatever the person is saying (e.g. yes, sure, we will call Dad in from the fields when it is lunchtime) because there is no down side to doing that as (a) the concern may be transient and (b) if the concern is persistent, it's going to persist no matter what you say or do, so just keep reassuring.
Validation is often easier for all concerned than trying to force a reorientation to facts because that increases everyone's anxiety and doesn't work anyways.

There is more suffering for caregivers who need to adjust expectations, than for the patient. What helped us (some) was letting go of the expectation that our parent would recall anyone's name or relationship, because we could see that they still knew and felt the love - after all, that's the main thing.

It's great that your parents can afford assisted living / memory care for your mother, and that your father is accepting that he should move to an easier living place.  That is huge because so many people resist this necessity and are left scrambling. And yes, sorting out the health care decision making, POAs etc. sooner rather than later is a must. You know where all the paperwork is, and have lists of bank accounts, assets, safety deposit boxes, passwords, etc.? 

All the best to you all.