I only talk about one thing lately…

I haven’t written a blog post in what seems like a million years, and yet in many ways, the main focus of my last post is the focus of this post.

I am talking about my mother.

When I last wrote in 2020, I had just found a caregiver for my mother, a good friend who had recently lost her own mother. She was struggling to deal with her need to have someone to take care of, and I was struggling to maintain my private practice and still take care of my mother. Our needs were a perfect fit to each other’s, like two puzzle pieces that suddenly discover how well they fit each other.

That was three years ago. Today, my mom is in a facility that offers care to seniors, beginning with independent living (with mild assistance, after all, meals and housecleaning are provided as a part of your rent) and advancing all the way to memory care.

My mom moved into her one-bedroom independent living unit in early December 2021.  It took her a while to adjust to the move because she was very attached to her house and all the ‘things’ she and my father had accumulated in 23 years of living there.  We went through a rough patch for about six months, and then she became very good friends with a group of ladies who played Bingo, and the next thing I knew my mom was playing Bingo every day, going to Happy Hours to sing and dance with her friends, and watching TV at night with a new resident who was lonely.  She was very happy and I was relieved.

When the head nurse called me in late May to ask me to meet with her and the head caregiver I wasn’t surprised.  I knew mom’s ability to live independently had been declining because I visit her every Sunday, and it was evident that she needed more assistance than she was allowing the caregivers to give her.  She wasn’t able to care for her dog the way she should, she wasn’t doing her laundry (mostly because she wasn’t changing her clothes), and I discovered that she wasn’t showering regularly. I had already spoken to her caregivers on multiple occasions trying to scheme ways of getting my mom to accept more assistance…but we hadn’t been successful.

I had no idea just how much trouble they had been having with my mom.  I discovered that my mother had been wandering into other people’s (unlocked) apartments, going through their things, and when the residents returned to their homes, my mom demanded that they get out of her her apartment. You read that correctly: she was essentially taking possession of other people’s apartments. 

I burst out laughing, much to the staff’s surprise.

My husband’s aunt died of dementia in early 2020, and we learned from her partner that Margot had been wandering into other people’s apartments and taking their things, boldly proclaiming ‘This is mine now!’ and walking away. She also began doing malicious things, like pulling the fire alarm and giggling while everyone ran past her to evacuate the building. Margot had been prim and proper her entire life and discovering that she had a bit of a wicked side was hilarious to me and my husband.  Hearing about my mom’s escapades brought all that back, and I shared the story with the staff and laughed with them about how shocking such behavior must be to most families.

When they told me that my mom needed to be moved to a higher level of care, I agreed. The staff was surprised that I agreed so quickly; apparently most families protest knowing that the move will upset their loved one because it implies things about their health and their behavior.  I didn’t want to go through with the move either, but it was necessary, and the staff was offering me the best option for my mom.  I agreed to move my mom into her new studio apartment by the end of that month.

My mom is in what they call ‘Signature Services’.  For most folks, this is their last stop, where they will be until they are in hospice care.  There is daily programming that allows them to sing, dance, and learn about current events. They have an art room where they are able to paint, draw, and do crafts. They have a TV room with recliners and a movie room with couches and end tables for snacks during the movies.  There is one higher level of care for people with dementia. This unit is locked, and entry requires a special pass. Many of the residents in this unit are incapable of communicating; some do not recognize their own family members.  That will probably be where my mom spends her final months, but I try not to think about that because I have no idea when that will be.

Sadly, I fear that it will be sooner rather than later.

Shortly after my mom moved into her new studio apartment in the memory care unit, she became ill with stomach flu, slipped in her own (sick) as she tried to get out of bed, and face-planted on the floor. She broke her nose and was potentially unconscious for a while. No one knows for sure because the staff found her and was unsure exactly how long she had been on the floor; they just knew that at her last bed check she was still safe in bed.

Everything changed that day, and not because she broke her nose. I don’t even think the potential brain injury from being knocked unconscious is the issue.

Every time my mom gets sick, she loses cognitive abilities.  When she had COVID back in January of this year, I was stunned by how different she seemed when I was finally able to visit her again. I can’t describe it to you because it was over six months ago and to be honest, her abilities have changed so much since then that I don’t remember how she was back in January 2023. I simply remember the feeling that someone had come during the night and vacuumed part of my mother’s cognitive abilities out of her head when no one was looking. COVID changed her from a woman who could live independently to a woman who couldn’t seem to understand that if the dog is in a crate in your bedroom and the food and water are in the kitchen, that your dog cannot eat or drink while they are in the crate.

It happened again when she was sick with the stomach flu. 

The grief is overwhelming.

When I moved her into her studio apartment in June, she was still sassy. She had some issues with mobility but nothing serious.  Then the stomach flu took some of her mind and her physical strength. I have to help her in and out of my car when we go out for lunch, and she struggles to lift her leg sufficiently to get into my car. She mumbles and her sentences don’t always make sense, and she seems to have conversations with herself sometimes, even when she is sitting across the lunch table from me.

My mom is still right there in front of me. She looks like my mom, she loves me like my mom, she is happy to see me when I visit…and then immediately forgets that I was there as soon as I am gone.

The idea of trying to have her in my home for the holidays is overwhelming because it takes so much of my energy to keep her safe and on task during my visits…and yet the idea of not having her with us for the holidays takes my breath away.  I am caught between my desire to be with her and my desire to be able to pay attention to my children and my husband, to simply be mentally present to anyone other than my mother during the holidays.

I have no idea what to do or how to do it. Yesterday I asked one of the caregivers about the holidays, about how many residents are gone during the holidays. She told me that about half of the residents are gone during the holidays, and it seemed at that moment she was encouraging me to take my mom home for a visit.  A few minutes later I realized that half of the residents are not well enough to go home with their families for a holiday celebration.  It’s early September…Thanksgiving isn’t until late November.  How much of my mom will be left for me to bring home? 

No matter what choice I make it seems like the wrong one. I remind myself over and over that I don’t have to start thinking about Thanksgiving for at least another 2 ½ months, and that I shouldn’t try to make any decisions now. That helps a little bit, and then the grief overwhelms me again.

No matter how often I visit or what we do on that visit, a few hours later she doesn’t remember that I was there.

No matter what I choose regarding the holidays, she won’t remember what we did the next day.

If she doesn’t remember, why does it seem like such a huge decision for me? Why am I overwhelmed with grief at the idea of not having her home for the holidays?

I wish that I had answers to those questions, but I don’t. Right now, all I can do is feel my grief and remind myself that nothing needs to be decided for several months.   I remind myself that she is happy when I am with her and that the visits are as important for me as they are for her. I can’t help her remember me…but I remember her.  I visit her every week to create more good memories of us together, to avoid having regrets, and so that I have something to hold onto when she goes home to God.

As awful as this sounds, I am beginning to understand why people stop visiting their relatives when they go into long term care facilities.  I won’t stop visiting her, not even when she doesn’t remember me anymore, but I understand things now that I wish I didn’t understand.  All I can do is pray that God grants me the grace to use this understanding to support others when they are making their decisions, and to not judge them if they choose differently than I have chosen.