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The Saga Continues

I have not checked in here for quite some time – not since coming home from 2 weeks in Boston where I moved my Aunt Vera to an assisted living facility that specializes in memory loss. It really was a remarkable experience – I am named after my Aunt Vera (obviously) and when I was young she was always my favorite aunt. She had a way about her that made you feel very loved and connected – and she was bright and interesting.

In some ways it was heartbreaking to see her so confused. She was admitted to Mass General because she had stopped letting in the home-case workers my mom and I were working with. She actually threw water on one of them as she chased them out of the house – very un-Vera like! She needed those in-home caretakers – she wasn’t drinking enough fluids or taking her medications. As I was waiting for my plane to leave for Boston to deal with that, I got the call that she was extremely confused and didn’t feel well and they were taking her by ambulance to Mass General. I was glad I was already on my way!

I’ve read a great book called “Learning to Speak Alzheimers,” which was given to me by the director the Harbor program (the memory-loss floor) at the assisted living place. I read it immediately, because I was feeling very stressed out after my visits with Vera. Was I saying the right things? What do you do when someone claims their mother and sister who live across the street check on her, so she’s okay living alone, and you know they have been dead for over 10 years? I thought you reminded them. Turns out that is kind of cruel – it’s as if they learned it for the first time every time you remind them. I cringed. I didn’t do it again.

You also find yourself repeating things. I felt like a jerk saying the same thing over and over – but finally realized, it was like the first time I said it to her each time. The book teaches you that you have to step in THEIR world and forget your perceptions of the world. Once I did that, it became so much easier because I let Vera guide the conversations and I didn’t worry if they disintegrated into nonsensical non-sequiters.

I felt a bond to her I hadn’t felt in 20 years. We talked about her father. The house she grew up in with her five sisters in Waltham. The fruit trees and grapes, and how her father made wine in the basement. The curious thing about Alzheimer’s is that the distant recall can be strikingly accurate. It’s short-term memory that is lost. Vera often became confused, wondering who these people were in her house (hospital room at Mass General).

I also noticed what the experts call “sundowning”. If I arrived around noon or so Vera would be pretty coherent. But as the afternoon wore on, her ability to understand the conversation or make sense deteriorated. I generally left at dinner so she would relax and eat instead of try to communicate – a struggle by 5 pm.

One of the most remarkable things about this experience is that I found out there are many wonderful, dedicated professionals who really care about their jobs and the people they serve. Sometimes we all get a little jaded – bureaucracies, big hospitals…a drain on your energy and an endless cycle of non-answers and runaround.

I experienced NONE of that. Even the Case Worker from the state’s protective services was kind, caring, extremely involved, and incredibly helpful. I talked to her day after day and felt like this was a friend – a guardian angel of sorts – who could help me as I struggled with decisions that would determine Vera’s future. The hospital Social Worker and Case Nurse both said Vera could not return home and that I had to find a place.

The pressure was on!

I was then fortunate to find The Falls – and a room for Vera with a view of the Charles River and a little waterfall. The director of the program clearly loved working with Alzheimer’s residents and she wowed me on my tour of the place. It really was more like a fancy adult dorm than any kind of nursing facility. It wasn’t depressing and didn’t smell. The residents seemed happy and active. I knew I had found a place that was better than I could ever have expected.

Three weeks later, Vera is doing well. The Director told me they had a “Senior Prom” with a three-piece band. Everyone, including Vera, dressed up for the event. Dining and dancing at The Falls! I felt so happy knowing Vera was not only safe, but being treated to such fun. She was very isolated. Once her dear friend Anna fell ill, Vera was pretty much on her own. She has two sisters who live in the area, but one is ill and her husband emphatically stated to the state protective services case worker that he was not going to get involved, and the other, well the other just couldn’t be bothered, even when protective services contacted her.

I may be travelling back to Boston sooner than expected. Turns out one of these “relatives” who couldn’t be bothered, got a little bothered by my being the guardian. It really is remarkable how people are able to ignore their failings and their neglect until they start to think – hmm, I don’t want someone else having control. In the past, these people have spent a lot of time trying to meddle into Vera’s financial affairs, so their motives are decidedly suspect.

This week I worked on getting all the bills in order. Of course, the tax bill showed up this week! I am also working through all the changes of address and financial arrangements to pay the bill at The Falls. Once again, everyone along the way has been gracious and helpful beyond my expectations.

I’ve learned a lot. About myself. About what “family” really means. There is a photo Vera keeps in her house. It is a photo of me, less than a year old, sitting on her lap. It makes my heart leap to see it proudly displayed in her living room. She loves me. I love her. I will do whatever is necessary to keep her safe and well cared for. And if the next time I visit, she has forgotten even who I am, I will simply look at that picture and know that somewhere in the deepest pockets of her mind, she knows.

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