Oct 28, 2020 Latest post:
Feb 15, 2024
I wish I could send individual responses to everyone who has written back which seems to be, well, everyone! So thanks for that. All your good wishes and offers of help are appreciated. This CaringBridge website is a godsend to keep people updated and be an simple way Earlene to interact with you all.
Many of you asked how I was doing. As you can imagine, my heart's broken seeing Earlene go through this. However, as one of my favorite stories says, "When the heart breaks, the teachings fall in." We are very fortunate to have many supportive people and good lessons in our lives. The teachings are tumbling in -- which is my pedantic way of saying I'm dealing with it.
Here's the chronology:
2014-5, early dementia diagnosis: Sometime during the 2 years she lived in Chicago, Earlene was diagnosed by a psychiatrist with early stage dementia. After moving back to Chevy Chase, Maryland, Earlene is unable to coordinate getting her things moved in between the movers and the condo people who need to schedule elevator use. She asks me for help. After a month of me helping with all sorts of things, both of us can see she is not able live alone. She asks me to move in with her again. This time, after some very open talk about our relationship and its boundaries, I agree. Pretty soon I'm doing all the cooking.
*** 3 years go by *** Earlene loses more cognitive function but it is so gradual it's hard to notice. She's still driving but not going far. Admits to being afraid of getting lost.
July 2018, Stroke: "Classic" stroke with right side of body affected. 1 month residential rehab & 1 month in-home rehab & follow up as an outpatient. Made a lot of progress toward full recovery. Just started back in the swimming pool and hoping to start driving again when...
October 14, 2019, Hard Fall: Earlene tripped in the hallway near the elevator in our building and landed directly on her right eye, breaking the globe, lens partially came out. Helicopter ride and emergency eye surgery in the middle of night. Later, the docs said most people with that damage lose the eye entirely while Earlene had a chance at getting all her sight back.
October 2020: After a year of working with an eye specialist, improvement has halted and Earlene can see only fuzzy shapes and bit of color out of the eye. Her depth perception remains off and makes walking outdoors much more difficult. We were looking forward to the eye doc doing a few office procedures this November that might improve her sight significantly.
October 26, 2020, Tooth Extraction: In the early afternoon Earlene had a tooth extracted by an oral surgeon. Much pain involved, but afterward she seemed to be doing just fine. Allowed only non-spicy, soft, room temperature food for a few days, I was flattered that she enjoyed my homemade soup that evening. Before going to bed, while claiming no discomfort, she asked for Tylenol. No other pain killer was offered (to my surprise) or requested (Earlene once did a hip replacement with only Tylenol afterward).
October 27, 2020, Stroke, Aphasia; Day 0: In the morning we watched TV while still in bed and talked about politics. All seemed fine. Earlene made a point of saying what a restful night she had had. After a while, though, she made a few funny sounds and suddenly was unable to talk coherently. I studied aphasia in grad school but never experienced it in this full blown form with anyone, let alone someone I'm close to. It was terrifying. Both language comprehension and expression were off and this got worse over time until we could not communicate at all. Then I discovered she didn't even recognize me anymore and was scared of me being near her. Thank heavens for EMTs and a quick response. She went to Sibley Memorial Hospital in DC, just 10 minutes away.
In the ER things were miserable. Earlene didn't understand what was happening and why all these people (in masks & plastic face shields no less) were asking her questions, poking her with needles, hooking up wires to her, and ultimately having to restrain her for her safety. It was difficult to witness. But by evening Earlene was in a "normal" room in the new part of the hospital, a wonderfully large, private room in a unit for cardiac and stroke patients.
October 28, 2020, The Day After, Day 1: This morning Earlene knew who I was and called me by name. She's been able to put a few short, coherent sentences together. She got evaluated for swallowing & had her first food and drink in about 36 hours. After spending all day yesterday in bed and very upset, she's been able to get some needed rest, and is now sitting calmly in a chair with her feet up. This is dramatically better than yesterday. Still confused and having trouble both with comprehension and expression, but way improved.
November 2, 2020; Day 6, Returning Home: By rights should go to rehab but we can not find one that would take visitors without which no one (me, doc, nurses) thinks Earlene would be okay. So she's coming home to me and physical, occupational, and speech therapists.
November 7, 2020; Day 11, Stroke, large: Big stroke that hits the vision processing center and affects her left side and takes the vision from her good eye. Back to the ER then 8 days in the hospital. Some sight returns but we are not sure what she sees or how much she can direct what she looks at.
November 14, 2020, Rehab; Day 18: Again failed to find a rehab that would allow visitors, Earlene's PCP stepped up and got us into the rehab in Virginia for which he's the medical director. Hardly ideal, it's just not set up to handle a patient with Earlene's needs, but it is better than being at home considering how much she does need.
December 10, 2020; Day 46; Returning Home Once Again: Now with the attitude that this is pretty much Earlene's last stop. She needs help with everything and there's nowhere else to go. Her income is just a bit too high for Medicaid [later learned this is not a concern for Maryland, just assets], so once we spend down her money on the in-home care she needs, we're lined up to use Capital Caring to provide in-home hospice care.
* * * [9 months go by] * * *
September 20, 2021; Day 328, thinking of nursing home: Earlene has had a few months of getting marginally better, then a plateau, now a long, slow decline. For a while we looked for senior housing, then it became clear that wasn't going to be possible. I am now looking for a nursing home with a memory care unit for her. Her body is getting weaker, she spends more time disoriented or delusional.
December 5, 2021; Day 404: Many false starts looking for a nursing home before admitting I needed to hire more in-home help. Got stuck trying to cope with my emotional torment about Earlene not getting sufficient care in even a good nursing home given staffing shortages, Earlene's dramatic disabilities, & her limited ability to pay (becoming a Medicaid patient). Started paying for more in-home help so I'd have more time to work on nursing home applications only to have in-home staffing problems that are taking the agency a long time to solve. Meanwhile I have less help than before.
January 20, 2022; Day 450: Could not get out of bed to the wheelchair. Cough had started a few days before. Back to Sibley Hospital where they found pneumonia and a mass in her lungs that wasn't there back in November of 2020, the last time she was in the hospital and got a CT scan. The docs tell me she needs hospice care.
January 31, 2022: Day 461, Small Stroke: With the pneumonia cleared up, she was to move from the hospital to assisted living at Alfred House III this morning for hospice care due that mass in her lungs. (She's too fragile to even biopsy it.) When I arrived at the hospital I found Earlene sitting up in bed, frozen, staring into space, & completely unresponsive. CT scan revealed a small stroke in the upper left of the brain. She's lost the ability to talk and to swallow. When combined with her advance directive about her care in a situation like this, it means Earlene is going to die rather quickly. She was never able to talk again although just once she did manage to sing a bit when a favorite song of our was playing.
February 1, 2022; Day 462, Moved to Alfred House 3: First day of no IV, no hydration, no nutrition (because she can't swallow). Ativan and then morphine keep her from discomfort.
February 15, 2022; Day 476, Died. Earlene died at 3:30am.