Hindsight, Regrets, Recriminations and Wistful Wishes

It was a long four years between my mother’s first set of strokes, and her death. While I do feel that overall, we did our best to take care of her, I would not be human if there weren’t things that I regret, or would do differently if I could.

She spent the first couple of years back here at home. She returned after four months of rehab in January of 2020, right before the pandemic started. Overall, she did well for the first year, though it was unfortunate that she lost some outpatient rehab time due to COVID shutting down the rehab hospital.

Things went downhill after her May 2021 stroke. It impacted her majorly, and after it, she could not be left unattended. We tried keeping her home for several months, in the hope that she would recover some, but it never happened, and we had to put her into assisted living in February of 2022 at Cornerstone in Canton.

Overall, I feel comfortable with the quality of care she got there. They realized fairly quickly that she wasn’t doing well in the main population, and moved her into the Compass memory unit. She never did fully cotton to being in assisted living, but she did enjoy the activities and the music there. The individual aides were kind of up and down — some not so wonderful, some were very attentive and helpful, but I always felt that the people in charge were paying attention.

My first regret is kind of on Mum herself. I would have liked to have had her back home for Christmas of 2022, but we had taken her to the Cape that summer. She’d greatly enjoyed herself, but was super upset when we brought her back to Cornerstone, which made it obvious that we could not bring her home for visits.

She was becoming increasingly disabled at the start of 2023, having increasing difficulty swallowing, with a couple of choking episodes. At the beginning of the year, we met with the folks at Cornerstone, who told us Mum was becoming unsuitable for Cornerstone. Unfortunately, the way elder care facilities are regulated, at least in Massachusetts, assisted living facilities are organized around a “social” model. They can provide help with the activities of daily living, but they are not set up to provide medical care. They were concerned about the choking, and Mum was also requiring more care than they could provide.

They had two recommendations. The first was to move her to a nursing home, which is set up around a medical model. There would be more assistance, and the medical staff there would be better equipped to deal with issues like her increasing inability to swallow.

The second recommendation was to hire a private duty aide, dedicated to her care, who would supplement the care the Cornerstone staff would give her. They suggested we could do this either on an ongoing basis, or temporarily, until we could find a nursing home with an open slot.

A big consideration was frankly cost. On the private duty aide side, they were recommending a twelve hour shift for the private duty aide, and the cost was around $32 an hour, with a shift differential on the weekend. On the nursing home side, there were two considerations — first, that it was more expensive than Cornerstone, though less expensive than Cornerstone plus an aide, and second, there would be less choice once Mum’s money ran out. The folks at Cornerstone suggested we might have a better choice of facilities if we got her in before she was reliant on Medicaid.

So we decided to go the private duty aide route temporarily, until we could settle on a facility. Given what we knew then, it was the best decision, but it is the one thing I would like a do-over on, for a couple of reasons.

First, the private duty aides were good, and Mum did well with them. We went through an agency, Celtic Homecare by Catherine, and the aides they sent were good. They were there from 8 to 8, and took care of getting Mum to the bathroom whenever she needed, keeping her entertained, and helping her eat. We did have a little trouble with the Cornerstone staff — some of them thought they were completely off the hook for helping with Mum, whereas the reason we hired the aides was that she was becoming a two-person assist case.

Secondly, as it turned out, Mum’s finances were in better shape than we appreciated, and we could have afforded the private duty aides, at least for a while. Whether Mum would have lived longer enough that finances would have become a problem is impossible to say. But I think she would have done better and been happier.

Thirdly, the nursing home we ended up with was not particularly wonderful.

Cornerstone gave us a list of facilities to look at, and one of them was The Ellis Rehabilitation and Nursing Center in Norwood. They had an immediate opening available, Mum’s primary care physician had also said good things about them previously, and several other people had had good experiences. My brother and sister checked them out separately, and I went over as well. Overall, we felt thankful that we were able to get her in there so quickly.

That feeling dissipated as soon as we got her in there. I’d had reservations beforehand, as I’d seen a woman calling and calling for help while I did my tour. I allowed myself to think that that kind of thing was normal in a nursing home.

When we first got her there, a nurse came by to check her over for wounds, but then we were on our own. They kept her isolated for a couple of days (COVID precautions) just stuck in her room with nothing to do, and nothing to interact with.

While there were some good staff there — the speech therapist who worked with her on eating was helpful, and Marie and Fiona were great, but overall, the feeling one got was that institutionally, they just didn’t give much of a damn for the residents. They tended to keep all 20 or so of the unit’s residents jammed together in one not-so-large room, with nothing to do but watch TV. When I spoke to the staff, they would yes me to death, but I never had the sense that my requests, observations or questions were followed up on. It never felt like the aides were checking up on residents in their rooms.

I remember visiting one afternoon, and Mum asked if we could get her to the bathroom. I’d been able to do this by myself at Cornerstone, as there was a grab bar in her bathroom on her strong side, but it was on the wrong side at Ellis, so I needed the help of an aide. I could handle getting her out of the wheelchair and on to the toilet, but I needed another set of hands to get her pants down. The aide on duty had a nasty attitude and informed me that they had taken her to the bathroom once already, and that she was incontinent anyway. Nevermind the fact that my mother wanted to go on the toilet, and just needed help.

The capper for us came in November. Brian and Pam had gone over there, and ended up spending the day there, as we were considering hospice, and they wanted to see the hospice nurse. They were there for hours, not one aide came by, despite the fact that she had a severe bedsore, to turn or move her.

If anyone is reading this, and wondering if they should send their loved one to The Ellis, don’t.

My final wistful wish is the manner of her death. The nurse on duty checked her around 9:30 on Monday, and noticed her condition had changed since the weekend. He did call my sister, but didn’t realize how bad the situation was, and told her there was no reason to come right away. He was wrong, and Mum died alone.

That bothers me. It bothers me that she died alone with no one to comfort her. On the other hand, if I’m being honest with myself, could I have held myself together if I had been there? I don’t know.

I was talking about it yesterday with my sister-in-law, and she pointed out that Mum may have wanted it that way. Up to the end, she was protective of us — she acknowledged to others that she was dying, but refused to talk about it with us. She did hang on long enough for all of us to come and say goodbye. Even until the end, there was some part of her that was Mum.