Back to the beginning of hospice

Read over some of the earlier posts for the first time since writing. Was unhappy that I didn't start documenting until a couple weeks into the process, thought it had been earlier. That said, I can't be too upset with myself, because it was more than a little busy.

As noted in other posts the VSED was something Mom & I had talked about for several years, but she always dismissed the idea. Then, as noted, her urologist started bringing up withdrawing care. This was in June. She said she needed to think about her options. I brought it up a few times and she said she still hadn't made a decision. At the beginning of August I asked again, explaining that if she was ready that was fine, but it she wasn't then I was going on a spiritual pilgrimage that was very needed; she said she wasn't ready. I started making plans & reservations. Then, a couple weeks later, we saw her internist, and I told him what the urologist had said. That's when he dropped that part about JP2 stopping all care, and that made a huge impression on her. She wanted more info, wanted me to give her a detailed schedule of what would happen and how long it would take, despite my telling her repeatedly that everyone was different. I went over to have the conversation face-to-face, but didn't think she was ready to make the decision any time soon.

I was gone for over three weeks, didn't see her in person for five days. She had an eye appointment on Oct 3, and of course I was meeting her there, it came up in conversation with the ophthalmologist that she was considering VSED, and his immediate response was 'If I was her that's what I'd do'. After the appointment I went back to the apartment, showed her some pictures, and then she calmly said 'I've decided I want to stop eating and go on hospice.' Gotta admit, that was a surprise. 

The next week is a blur, it was then, more so now, seven weeks later. There were calls to the internist to set up a meeting just about hospice, calling hospice, talking with the nursing director and several other things which escape me at the moment. All I remember was that it was non-stop, plus I was involved with the service that Sunday. I was at her house every day, she was very calmly dictating getting rid of things, reminding me of subscriptions to cancel and writing her obituary for both her residence and her college. On Sunday, with the appointment with the internist the next day, she told me she didn't want to eat dinner. (This is referenced previously.)

I so wish I'd been documenting after that appointment, but it really was incredibly busy. Hospice couldn't come out until that Thursday, we'd been anticipating either Tues or Wednesday, but apparently they were on a roll with other patients. Again, I can't remember all the details. By this point she was telling people, and her friends started dropping by to talk. It was interesting hearing about a side of her that I'd rarely seen, and she was very moved at many of the kind words. One woman said that Mom had changed her life through some of the readings and discussions in the inter-faith group she led for years; after the woman left Mom looked at me in amazement and said 'I had no idea she was so affected'. She asked me to repeat the woman's words several times, repeatedly amazed at her impact. 

The intake nurse came on Thursday, and, as previously noted, said that she wasn't comfortable pulling the Foley. This made Mom very anxious, and, as previously noted, was reversed by the nurse who came the following Monday. Hospice said they would be out twice a week, and it would increase as Mom deteriorated. I asked her about the timeline, and she said 2-3 weeks but, of course, you could never know for sure when it would happen.

My happiest memory is that Monday, so after she had been officially on hospice for only four days. She was still very much herself, looked like herself, acting normally, despite no eating for a week and only limited water. She'd gone to only wearing nightgowns, not getting dressed. There was a sale scheduled for election day, Nov 8th, that would benefit the benevolent fund, and Mom announced to me that she wanted to go through her jewelry and donate everything I didn't want to help the fund. Mom had always been an avid jewelry collector, especially necklaces and earrings. She never got her ears pierced, was so happy when I got mine done and then would buy earrings for me. But she had dozens and dozens of pairs of clip-on earrings or screw back earrings for non-pierced ears. She'd stopped wearing them years before, and they'd just sat there, she was stunned there were so many. Three jewelry boxes absolutely stuffed, then more and more office-type boxes with necklaces, and then a small cabinet. She was horrified she had that much! 'Why did I keep buying all these things?' she kept asking. She didn't remember most of them, or didn't remember why or where she had bought, I was able to fill in some blanks. There was a ring she never told me her parents had given her for graduation, although she couldn't remember if it was high school or college. It was so much fun looking through all those boxes, all those memories, all the craft festivals and trips to Europe represented in the form of jewelry. I kept more stuff than I can ever picture wearing, because when you don't work there are a limited number of times when completely accessorizing doesn't look ridiculous, and I've got a fairly extensive collection of my own. But I couldn't get rid of her favorite necklace when I was growing up, or the amber from our trip to Russia, or the gold embossed black metal from Toledo, Spain, or the foil glass from Venice, Italy.

Even with my keeping a small shopping bag full there were still hundreds of pieces to donate. I had called the woman running the sale the previous week, and she told me they would be sorting in a room upstairs. Mom was so happy when I told her how all the women exclaimed over all the boxes, couldn't believe what nice things she was donating. A couple of them said 'How did she manage to accumulate this much?' I pointed out that most women bought more than they needed, because they went with a new outfit, or were perfect for a season, or were just appealing, and that it was easy to forget how much you have when it's in several different places. 

The rest of that week we went through some other things, there was a set of postcards she had framed and really wanted to see, I found them after she was unconscious. We met with the social worker and had a lovely chat. Mom was getting weaker and weaker, sleeping more, and it finally hit me that this was going to be hard on me as she worsened. Beth & Mark had separately offered to come up from Virginia to support me, and a week into the process I decided to take them up on their kindness. Mark can work remotely, Beth at 90 yo still does an incredible amount of volunteering but told everyone she was gone for the foreseeable future. They arrived and saw Mom on the 21rst, late afternoon. Mom brightened up, gave her 'so far dying is easy' line, but only 10 minutes after their arrival announced that she wanted to nap and asked them to leave.  

And that pretty much covers what I can remember that isn't in the prior posts, which began on the 17th, 12 days before she died. This is, of course, mostly journaling for me, before the memories fade even more than they already have. 

I picked up her favorite ring from being sized on Tuesday, and have been wearing it every day. It's beautiful, and brings back good memories. On Wednesday I headed to Beth's, the first time in at least a decade that I hadn't come on Thanksgiving Day. After Mom stopped wanting to travel down to VA many years ago I would go to her place and eat dinner at noon, then drive 4+ hours to Beth's. Last year I don't know why I didn't leave Wednesday, maybe because of the cats, with COVID they weren't allowing visitors at Mom's. It felt weird to come down on Thursday, and, of course, the traffic was worse. 

It's been a lovely several days with family, enhanced by Spice being with me. He's just the best kitty, although he hates the car ride, even with medication. But he's enjoyed running around and checking out new smells and unfamiliar spaces, and has thoroughly enchanted the family members who hadn't met him. I'm hanging with friends for a couple days, then Spice & I will return home and to reality. 

Reality involves more people to contact, more paperwork to be done, more boxes to cope with, more of my stuff that needs to be sifted through and gotten rid of to make room for things of Mom's with which I'm not ready to part. I'm keeping too many things, but my position is that I'd rather get rid of things slowly than make a mistake and lose something forever. It is weird, however, as more and more of her things get incorporated into my house, which I've mentioned. It's still weird.