I took Mom to the ER today, after she reported (today) waking up with hours of chest and back pain yesterday. It isn't unusual for her to experience symptoms that would send most people to the hospital. It is very unusual for her to allow me to step in and guide her to actual medical care. She usually avoids medical care and simply berates herself and excuses physical symptoms as yet another example of her "laziness", etc. As I told her before she agreed to go -- what's the worst thing that could happen if they find nothing wrong and send her home? And that's pretty much what happened, thank goodness. But for $90 and 4 hours she got medical testing that would have taken a lot more time and money if I'd simply gotten her to an appointment with her PCP.
I mention this because the last time I was in that ER triage room was about a year ago with my Dad, a few weeks before he passed. He was a frequent flier at that heart hospital, but that particular visit he had been discharged from a rehab hospital because he had no real chance of recovery. He had badly broken his arm during his last hospital stay and then, post-surgery, had fallen on the same arm and lost most of the skin on it (plus another break). The wound was weeping copious amounts of lymph fluid. They cleaned it up, re-bandaged the arm, and were on the cusp of discharging him back home where he had no hired caregiver, no handicap accessibility (he was by that time unable to walk by himself). He was actively dying but had refused hospice care, convinced he would not only survive but walk again, despite the permanent nerve damage in his lower body.
I watched him in the triage room and then fled to my car and wept. I should have been the caregiver he didn't have, and I was trying to get to the point where I could be (if only he and my mom would let me), but letting go of a career I'd spent a lifetime developing was hard and I had agreed to several weeks' notice.
I should have been there. I should have been there to clean his wound, to clean his feet, to help him to the bathroom and the car, to make sure he didn't fall again and end up back in the ER, to make sure Mom didn't order restaurant food delivery that he craved but that he no longer had the kidney function to tolerate. I should have been there -- but I wasn't. I should have been there for a couple of years, but I avoid them, even though I only lived 15 minutes away, because they made it so hard to help them. Impossible to help them, really. Impossible to me.
Since Dad died I've run in to roadblock after roadblock with Mom, all due to a persistent inability to follow through on any tasks of daily living on her part -- and a more persistent and stubborn denial that she won't be following through the next day. She hasn't washed clothes in months. Every piece of silverware in her apartment is dirty and piled on the counter or filling the sink. Dog urine covers the floor; where she tried to mop it up she simply ends up spreading it around. My husband pays her rent (before this apartment she lived rent free in a home we own). We both love her to bits, but if they won't let you help them...
Well, if they won't let you help them then you tell yourself two opposing things: 1) I can't help them because they won't let me so I'll stop beating my head against that brick wall, and 2) I am the worst, the very worst daughter in the world and my parents have suffered in horrific way, even to their death (for which I was not present, arriving an hour after the fact), because I am too weak to overcome their resistance.
But you know what? Today was a good day. She let me help her - cheerfully, even. At the end of the day we are both less anxious than we would otherwise have been and have a lot more medical information.
This stuff is hard, ya'll. The very hardest thing I've ever faced. So much love. So many chips on both my shoulders. The regret is crushing. The love, though...
So much love. And hope.
Heads up: they need to get to the hospital within 90 mins of a heart attack to prevent heart damage.
My elderly aunt had idiopathic pulmonary fibrosis and that was a hard, slow, steady decline into death. While all the kids helped out, she was supremely difficult and refused to believe she was dying and refused to discuss it and kicked anyone out if they mentioned hospice or death etc. My cousin D in particular slaved over her. Took excellent care of her mother at her own expense, had to take a leave at work, her blood pressure went high etc. I mean D SLAVED over her mother (who was angry, difficult, mean and just really really ugly at times to D).
D ran to the neighborhood grocery store to pick up some things for her mom (some other family was there) and her mom was mad and then just up and died, so D missed it. Like almost it was on purpose (it felt that way to D).
Woulda, coulda, shoulda. D still doesn’t really know what to make of the entire situation and it’s years later.
My friend is a hospice doctor. She said the vast majority for people wait until someone takes a break — either everyone or the most significant person— and when they leave the room that is when the LO dies.
You can woulda coulda shoulda yourself to death. Your dad went out how he chose to go out.
I was raised by not one, but FIVE outrageous but wildly devoted MOMS (my birth mother suffered from agoraphobia for my entire memory of her), and lost the last of the five - my youngest aunt at the beginning of last December.
I lived your life 4 times (one aunt was living out of the area before she died), cried for them, cajoled them, begged them, researched for them, accepted their denials/declines/dissensions
So up front NO WORDS OF WISDOM FROM ME about “Life With Mama”.
But please hear this- PLEASE BE GOOD and DILIGENT and KIND to YOURSELF.
I learned with my birth mom, the oldest and first to depart this life, that I couldn’t change the sorrows in her life by piling them onto myself. I took that lesson into account for the next three.
It didn’t change the outcome. They denied/declined/dissented, ignored my “suggestions”, refused help……all of it, and I dearly loved them still.
The last to go was riddled with pressure ulcers, at the end of over a year in hospice. I would make my daily visits, say every time I saw her that she was beautiful and that I loved her and that if her sisters (already deceased) came by to take her home that she could go with them if she wanted to- the choice was hers.
The last day I saw her, she looked at me as I said “I love you”, and laboriously uttered “I love you too”.
The last words. I miss them all, but thoughts of their reunion sustain me.
It’s very good you were able to help your mom. Great!
Negative comment:
OP, you’re clearly a very kind person. Not neglecting anyone, etc. But please be aware: it’s very nice your husband pays her rent…But, what she needs are hired caregivers. If you’re short on money, find her a smaller home, and spend the money on caregivers.
You said your mom has dementia most likely, and even since years. OP, I’m telling you, your mom 100% for sure has dementia. No normal parent lives with dog urine everywhere, and without washing their clothes for months.
She’s not responsible for her decisions (with dementia you can’t reason correctly).
She can’t live safely at home alone. She’ll keep making bad decisions, because her brain is damaged (dementia is brain damage, and it’ll get worse and worse).
APS, if they see her living alone, would probably have sought guardianship: elderly adult pretty much abandoned in her home.
Please, you clearly have the money - instead of paying high rent, get her a smaller place, and pay for caregivers.
Any other option is like turning a blind eye to the situation, and indeed like running away.
I have plenty of friends whose siblings “ran away”. Couldn’t be bothered to help. My friends then alone had to hire caregivers, do everything. I’m an only child. I’ve set up caregivers for my mom in her home.
You don’t give your mom a choice (like “Dear mom-with-a-perfect-brain, do you want caregivers?”).
It’s NOT her decision:
1. She has dementia. She’s not allowed to decide. She makes bad decisions.
2. You’re paying her rent. And that’s that (“Mom, I’m hiring caregivers.”)