Care

The bulk of this post is the one I mentioned having finished a few weeks ago. I don't really try to match my writing with current events but this one is a personal dump and had nothing to do with what felt like very important events of the day. Ironically this week because of the flooding in Houston there is more news that connects to my post. There was on photo in particular that felt like a gut punch. In it a group of older women in what looks like night gowns are sitting wast deep in flood water. There is reporting about their eventual rescue but that photo haunts me. They look so alone and vulnerable. It was always one of my biggest fears. The mommie and I being stranded in some kind of disaster. Me not being able to take care of her.  


I think a lot about care giving. Both in terms of individual care givers and care facilities. I've been saying that I feel like my grieving process for the mommie is relatively normal. It's cyclical. Rises and falls. Sometimes a tight circle that keeps me on the verge of tears for days. Sometimes wide. Days go by. But my feelings about so many things that happened during her last few years always feel like they're right under the surface.
The first "senior village" the mommie moved into seemed really nice. She was still in great shape. Active, alert. Her husband was at first but there was evidence that he had a few mini stokes and he was slowing down. They lived in a sort of town house. Small in comparison to how they had been living but a nice size. There was a dining room in a building a short walk from their place and a hair salon. Handy men. Grounds keepers. There was an assisted living section with limited medical care but nothing for dementia or Alzheimer's. It worked quite well for a few years but I knew she was worried about what would happen to him if she passed first. That combined with boredom and a love of change caused her to move to the next senior community.
Senior communities may have assisted living and memory care but many are just enclaves for older people who are still independent. The second place was extremely expensive to enter but promised levels of care that should have carried the resident all the way through any aging process. They were new and developing. Mom's cottage wasn't quite finished when they first moved in. She loved it. She was still active and alert. Her husband's decline continued and one night, after they'd returned home from a day of doctor visits and dining out, he fell down and never got back up.
She was there another two or three years and her decline began. She made the choice to leave but not happily. As we drove away she stared at her little home and I knew she was afraid and sad. I held her hand but I couldn't really comfort her. She had to let go of so much. Furniture. Memories. Friends.
The big problem with the second place was that even though they had the facilities to care for her they didn't have a system to track her decline. She was neither willing nor able to make choices about her care needs and they weren't watching. I was but I lived on the other side of the country.
I managed to get her to stop driving by having temper tantrums when she did. I interviewed home health care so I would have them at the ready and tried to set some systems in place but that last year was nerve wracking. And when I arrived for what I thought was a visit I saw that things were not good. By then she'd made the choice to leave but I still cringe when I think of that last year on her own.
I chose the first assisted living place in Hood River in too much of a rush but I feel like I might have chosen it even if I hadn't been in a rush because the apartments were bigger. It was horrible. The second was wonderful by comparison but fraught with the same problems of all the other places. Under-staffing. Not great food. In many ways all these placed say here's a facility, here's your options. But they don't handle the transitions from one level of decline to the next very well.
To be fair, it's hard. The mommie was independent and stubborn. Determined to do things her way and not really able to see what she could no longer do. As much as I wanted her to do the things I needed her to do I hated messing with her autonomy. And institutions are rightly not permitted to mess with someone's autonomy.
Most of the individual care givers were great but there were problems. We were very lucky to have Mandy as her main care giver other than me. But she was in a facility. And by the end Mandy and I did all the care. We had very little help from the facility.
You understand from the beginning that if the care needed is more than the facility can provide you will need to move. My mother was (essentially) evicted from the last two places she called home. She was very sick both times. That is one of the things I cannot let go off. The meanness of that fact. The first place was actually mean. The second was not. I feel they just panicked. But the fact is she had no where to go except for the nest. The nest is a perfect size for me. Not as much for both of us. Twice I had to turn my small sanctuary into a nursing home. Several times I looked for a larger place we could move into. But I couldn't care for her alone and the cost of home health care is off the chart.
Most of these places are well intended but they are all a bit of a scam. It's really hard to predict the ageing process. Sudden decline is unexpected and often confusing. I always felt like I was playing catch up with the mommie in terms of my understanding of where she was at. I was there enough to notice subtle changes but caregivers who aren't supposed to spend much time with any given person may miss things. Even physical changes sneak up on you. If Mandy hadn't been with the mommie five days a week and had such familiarity with her body things would have been missed.
In the example of the second place the mommie chose they offered so much but didn't really have the resources to fulfill those promises. Despite the huge amount of money she paid to get in and the huge amount she paid every month the more she needed the longer her bill got. Five dollars for the nurse to stop by and check a bandage. Twenty for the guy who did her shopping. On and on. If you're in good shape when you go in and die before you get too sick (in mind or body) then it's all good. But the more care you need the more you pay. Which is why I will always think of assisted living as a scam.
There was one extremely difficult event when the mommie was still in her house in NC. She had fallen in the bathroom and there was a huge mess. I called for help and two of the snottiest girls I've ever met came. They did the bare minimum and left me to try and get her settled, clean up the mess and we had just returned from shopping. The car door was open and there were bags strewn through the kitchen. I remember thinking that if I had walked past that situation as a stranger I would have tried to help. The lack of kindness was infuriating. I have a long list of moments of kindness in my experience of trying to take care of her but the moments when a "it's not my job" attitude prevailed were so shocking that they haunt me.


I don't know why this gets stirred up in me. I wrote most of this before I saw the picture of the women in the water so it wasn't that. Today is just a bad day.