Note: This is a part of a series of posts about DrG’s parents, who both suffered from and ultimately passed away from serious health conditions – his mom from multiple myeloma, and his dad from complications from a severe stroke. Over the course of their illnesses, he put up these posts. DrG thought about removing them, but ultimately decided to leave them up in the hopes that they would help other people.
What an utterly exhausting trip – physically, mentally, and emotionally – I feel totally wrung out. I also feel like I have a bit of PTSD, though I honestly can’t say I know what it feels like. I woke up this morning, tense and irritable (a lovely way to start the day).
Unfortunately, a week later, my last post seems really over-optimistic. I now think it’s extremely unlikely that my mom is ever going to leave San Diego, and I don’t think we have 3 months, in fact, I now think we have between 1-4 weeks.
It was the best of times, it was the worst of times
In order for this story to make sense, here’s a little background. My mom was born and raised in England, and most of her family still lives there. Prior to this trip we’d been talking with one of her brothers and arranged to have him fly in for a surprise visit, as they haven’t seen each other for 5 years or so. He had come into town the day before this story.
Here’s the story: A few days ago, as I was getting ready to leave the nursing / rehab facility to go pick up her brother and sister (who does live here in the US) my mom volunteers, ‘I’m coming too!’ Whaaaaa?? So I did a double take, and assuming the nursing staff would back me up I pulled the ‘Oh, I don’t think it’s allowed, but I’ll ask for you.’ And they came back with a ‘SURE! Just have her back within 4 hours.’ So, uhhhh…. Okay I guess we’re going.
I manage to get her loaded and take her home. It was a terrible mistake, and it made clear to me how far things have come.
Within the confines of the nursing facility, with its extremely simple schedule and complete lack of demands my mom’s physical and mental deficits are pretty easy to gloss over. Back in a free living situation, they become glaringly apparent.
Physically it became instantly apparent, there was no way she was going to be able to return to her home. She can’t take care of herself at all. If you’ve ever had to be intimately involved in helping one of your parents go to the bathroom, you understand.
It’s an intensely uncomfortable experience, physically-emotionally because you see someone you remember as strong and capable, reduced to having trouble performing basic, basic things, and (goodness knows I’m not squeamish about bodily fluids but) it’s uncomfortable having to get into your parents personal space.
The biggest sign / shock though came with her reaction to her house. For my mom her home truly has been her castle. She took intense pride in her home, in renovating, decorating, caring for and upgrading her house. Her garden was always the nicest one on the block, and she had painstakingly at great expense over many years gotten the nice things she liked to be surrounded by.
And when she came back, for the first time in months, she didn’t care, ask about, or pay attention to any of it. She didn’t ask to be wheeled around the house to check on her stuff, or look at her stuff, or comment on her stuff. She wasn’t really relieved to be home, and when we left, she left without any goodbye to her home or emotion about leaving it.
A cup of tea
The brightest moment, but also the most terrible, was when we all sat down, my mom and I, my uncle and his wife and my aunt to have a cup of tea. They’re British after all, and it’s in my genes, so we had to have a cup of tea. And it was the bright spot of the day, and of the trip.
A warm, comfortable 30 minutes or so, all of us sipping tea, bantering, laughing, enjoying each others company. This is what makes us human.
But it also highlighted how little of my mom was left. She didn’t talk a lot, she didn’t engage much. As my uncle said, who hadn’t seen her in 5 years, ‘so much of her is gone. Her sense of humor, her joy…’ It was an intensely sad realization.
On our last visit with her, we (my wife, son, and I) sat in mostly silence. My mom wasn’t able to hold a conversation, she would answer simple questions and then lapse into silence. She was very quiet, and still, and mostly sat staring off into nothing.
The look of someone who is in the dying process. Someone checking out from this world.
I feel like things have begun moving very fast. She was definitely much more lucid and engaged at the beginning of our visit than at the end. I don’t know if it’s seeing her brother has given her the green light to check out, or…
But I won’t be surprised if I hear anytime this week that she’s dead. Part of me is on edge, waiting for a late night phone call. And I think on the outside that we have a month left.
The last of the legal paperwork, we’re forming a trust, is in process and should be done within a few days.
We’re beginning to make arrangements for her cremation and ceremony.
We’re beginning the process of selling their house, and we’ll be moving my dad up to assisted living here in Seattle.
She’s due to be discharged from the nursing / rehab facility in about a week or so, and since it’s now so clear she won’t be coming home, we’re looking at getting her placed in an in-patient hospice facility for whatever time she has left.
At first I was sad we may not have a ‘big’ last farewell, but after reflecting on it, I realized it’s not about single events, it’s about the whole line of events. You shouldn’t need to say ‘I love you’ because you’ve said it a thousand times before…
Thank you for reading, and for any of my patients, I ask for your patience as we come down to the end of things here, I may have to leave on sudden notice.
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Photo attribution – https://bit.ly/2HyNlha
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