Mom’s been diagnosed for 5 1/2 years. A few minor strokes prior to that. The first few years had Mom with a 24/7 aide living in my old bedroom.
A fall in early 2021 was caused by pretty bad Lumbar stenosis. A laminectomy cleared that out, she emerged from that on the walker. It was during that recovery that a brain CT formalized her diagnosis.
Mom was on a walker except when she walked away from it. Doing cooking mostly on her own ( cause, it’s her kitchen dammit ! ) and bathing with some assistance.
I’ve been on her checking account for more than 10 years and as of about early 2019 she had me start writing her bills. That level of detail was becoming a bit difficult.
Trips from NYC to Philly were pretty constant in the first year to 18 months. Good thing the world was on a lockdown and both my career and that of my Dearly Beloved™ had come to a screeching halt. I got into the pattern of doing Bills 'N Pills. It took over 2 years to get her core medications in sync. During that time I was filling up the typical plastic pill boxes. Her aide- most aides- are legally prohibited from “dispensing” medications. So, the aide would flip up the little cover for “Monday Lunchtime” pills. Mom would tip them out into a cup, and work her way through them with water or juice.
Like many older people, Mom is always cold. This means no air conditioning at all but for the worst of days. I realized that since those pill boxes were not airtight, some of the pills were slowly disintegrating from the moisture in the air. (Philadelphia in the summertime. It’s a miracle anyone was focused enough to write, no less sign, the Declaration of Independence…) Mom was also taking to dipping into the pill bottles if she thought she’d missed a dose here or there. Not good.
Mom’s PCP suggested we use a service that packages each set of pills with a label. Whatta waste of money, thought I. 10 minutes on Amazon and we were set with heat sealer device and the right size of sealable plastic pouches. 4 meds issues per day. We heat seal them together like condoms. Problem solved.
There have been some nightmare moments with substitute aides. One almost set the house on fire. Had I not been down there and found the plastic container she placed into the oven to heat Mom’s dinner up, well…that all-wooden house built in 1949 might have gone up fast.
All of this is background. I opened this thread because I’ve been struggling with watching Mom slowly disappear. It is just monstrous. 2 years ago, she stood for too long at the kitchen counter, didn’t have her walker nearby and as she walked into the living room, her strength gave out and she fell. Broke her femur. Surgery, recovery, rehab, etc. That was the last of her muscle density, lost to laying in bed for a few weeks. She never walked again. She moves from laying in bed to sitting in wheelchair to commode to bed, etc etc. She CARES less and less about the situation.
Up by 5am, she will sit and “read” her New Yorker magazines. She struggles to retain anything and so the reading is habit and clutching onto what information input she get enjoy in the moment. It all washes away a few moments after she puts the magazine down.
Since last autumn there’s been quite a decline. She still knows who I am face to face. On the phone, most of the time. She cannot hold a conversation most days. It isn’t word salad yet. She tells me, “my brain is mush. I don’t know what I am trying to say”.
My guilt level is immense. Because I’ve done quite a bit of mourning her already. Especially the first year or two. Now, I’ll run down there (110 miles give or take) for the day to take care of stuff. Sit with her for a little while. Do my chores. Head back. For the first few years it was very hard to leave. She isn’t one to guilt me out- I do that all on my own. But more recently? Not much registers in a big way. We come and go, do our Bills N Pills, make her special breakfast that she adores. Up to 27 plastic tubs of it, living in the deep freezer.
By the time she dies, I think I will be hardest on myself because I likely WON’T be overwrought. My mother is slowly disappearing.
Mom’s a retired Hospice nurse. She’s already gone through 2 agencies. Because she does not have a terminal diagnosis akin to cancere or MS or Parkinson’s, she may be taken on initially but eventually they cannot justify keeping her on the books. The family’s exposure to the Hospice world is pretty extensive because of Mom; nobody freaked out when the first agency came into the house. We all get it.
If you’re living this now, be kind to yourself. You’re not a monster because you’re worn out of mourning someone while they aren’t dead yet. It is a brutal situation to be in. Cannot IMAGINE what it has been for family and friends who have done this for a spouse.
