It is the oddest feeling as I prepare to pull out my carry-on bag from the recesses of my closet. It both feels like yesterday and ten years ago since I’ve opened it. It’s been 17 months to be exact.
The last time I used it was when I was assisting my 89-year-old mother Ginny get settled in her new Independent-living apartment in a senior living facility. I live across the state from her and was staying a few days to unpack boxes and run errands with her.
And now, in some strange synchronicity, that is exactly where I’ll be returning. Over two weeks ago, my older sister had received a phone call that Ginny had tried to leave the building at 3:00 a.m. “Exit-seeking” seniors are immediately categorized as “high-risk” and are placed into a separate Memory Care unit inside the building. Memory Care is long-term nursing care with skilled staff trained to assist with cognitive issues like Alzheimer’s and Vascular dementia. It is a secured area with additional staff. Ginny was escorted to this unit by a guard in the middle of the night. The phone call was to reassure us that she was safe and being cared for but that there would be a substantial rent increase for the services provided in Memory Care.
Stepping back for a moment, our family was aware of isolated incidences of some form of dementia. Her doctor had never diagnosed a cognitive issue, so we attributed it to her advancing years. I wrote of one such incidence in “Unwelcome Visitor.” Otherwise, she pretty much retained her typical strong and independent nature and interacted with us and others normally.
She even continued to be herself through the long months of the COVID-19 lockdown. She enjoyed her 90th birthday during lockdown (as best she could) with a family visit through the window. She was relieved when restrictions were loosened and she got out to run errands (Covid be damned, she hugged her long-time hairdresser) and she resumed meals in the dining room.
But then the second lockdown happened. By late December, we noticed change. She seemed to turn inward; her thoughts focused on her parents. She talked about them in the present tense. She talked about “her girls” like we were living with her.
But all this was tempered with great hope. She was about to be vaccinated! It would not be long before we could see her in person, hug her, get her out into the sunshine. We told her that we were so close now! We talked to her constantly to keep her spirits up.
Then, on the day before her second shot, she fell simply standing by her door waiting for her breakfast to be delivered. She was taken to the hospital and released. No injuries. They reached out to my sister explaining that a nurse working for an in-house service agency had visited mom, and she had seen trouble signs that Ginny might need additional services “to help her get over this bump.” We immediately agreed. For us, it was a gift that she now had dedicated attention on her for two hours each day.
Initially, Ginny seemed resigned with this development but it only took a few days before the grumbling began. She didn’t appreciate people coming in “unannounced” and that she couldn’t stop them. It’s important to note that with my dad’s passing in 1978, Ginny has lived alone for 43 years and is fiercely independent. She has been a full-on warrior; meeting her needs and life’s challenges with great self-sufficiency for a very long time. She’s accustomed to being in charge of her life. Unfortunately, this new assistance was becoming a liability.
The next time I spoke with her, her voice seemed weaker. Dispirited. She couldn’t answer some of my questions, although that can sometimes be attributed to hearing issues. Still, there were moments when the old her broke through. When I asked if she was dressed yet (it was after 11:00 and I knew food would be arriving) she answered “What? Are you expecting a miracle?” and we both laughed. A moment later her voice diminished again and she just sighed saying she didn’t like people coming in and she practically whispered “there was nowhere to go and nothing to do.” The words and how she said them deeply pained me.
The repercussions of the Corona Virus have taken an enormous mental toll. It may not have created her cognitive issues, but it sure as hell has exacerbated them.
I found myself going online to see if there is any research about this phenomenon as it is so new.
Health Day News joined a recent discussion with Carla Perissinotto, M.D., geriatrician and associate chief for geriatrics clinical programs at the University of California in San Francisco as she addressed the current challenges facing seniors in assisted living or nursing homes during the COVID-19 pandemic.
“a lack of social interaction can be detrimental to a person’s cognitive health and even increase the risk for developing dementia over time by 50 percent, she explained… we are seeing these changes in real time. We haven’t actually had time to study this in detail,” Perissinotto said. “But, anecdotally, [I hear] from family members and friends and people living and working in assisted living and nursing homes that they are absolutely seeing changes in physical function and in cognitive sharpness, just by not being around other people and then by the subjective feeling of being alone.”
And so, taking matters into her own hands, mom had walked out the door. Or, tried to.
We need to be packing up her old apartment soon, but that is if they even let us in. Many Covid policies remain in place despite vaccinations. And because she is unable to afford that steep rent increase, we are looking at alternate facilities. One has a Memory Care wait list. Another one has been crossed off the list as it doesn’t meet certain criteria. We’re in a holding pattern with her current facility as they are not forthcoming about shared apartment options, our timeline to exit, and the bottom line of involved costs. There are many moving parts and we’re trying to gain a foothold.
We both spoke with her the day we heard the news. The phone system is such that a family member texts a cell phone and they bring it to the resident to use. The first call was less than a minute, but she seemed quite up which was an enormous relief.
The second time I spoke with her, it was a much longer call and she was alert and able to reference the Tiger Woods car crash. (I once mentioned in a blog post (click here) about finding small joys late in life and how much she loves to watch Tiger play. At the time, I could only speculate on why she was so drawn to him. She never played golf so I didn’t understand. The connection is literally dawning on me now. He’s a warrior too.)
Other parts of the call weren’t perfect though. She mentioned wanting to “go out the back door” and they wouldn’t let her. She did want one of us to come and get her which broke my heart all over again. I made the mistake of sharing some good family news that my husband had just been vaccinated and that prompted an irritated response that she hadn’t gotten her second shot (she had) and that needs to be addressed “now.” I need to learn the language of family members who love someone with advancing dementia. It is important to learn both what to say and what not to say.
Global death totals related to COVID-19 are shocking. But we’re learning first-hand how many other types of casualties linked to Covid lay just underneath. We’re devastated. We’re anxious. And we’re sad. Of all the challenges, we just didn’t think that our warrior mom would decline in this way.
Photo by Maria Orlova on Pexels.com
Leaving The Door Open 
Melanie I’m very sorry to hear of your mother’s decline. I wish I had pearls of wisdom to share and pray you find the resources needed to best handle this situation. Hugs to you and Dennie
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Thank you for your kind support Veronique. We will figure it out. 😊
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Everything you referenced happened to my mom, except for trying to escape. Mom used to walk outside and had a regular route that she followed. After some initial worry, we learned that perhaps our concerns were unfounded. Then out, of the blue, she changed her route one day, deciding she needed to get a card for her niece. She got lost, and by the grace of God or good fortune, ran into a kind soul who drove her back to the assisted living facility. I always wanted to thank that person, but I never got the chance since we don’t know who it was.
After mom moved over to the memory care side, there was a slight bounce back, but then she slept more and more, too weak to do much but sleep. Engaging her in conversation became more difficult. She confused me with my dad. It was all hard, and yet I knew she had done everything she wanted in life. That provided me a lot of comfort as I continued to see her decline.
Wishing you lots of happy memories and those precious moments like the Tiger reference.
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Thank you Pete for such a comforting comment. Your words “and yet I knew she had done everything she wanted in life” is something I (and others reading this) should always hold on to; it’s a wonderful insight. She has seen both her grandsons marry and got to travel out East again which she absolutely loved. One goal is to keep her laughing because she loves that too. We’ll have to see what’s possible with any future outings. I just wonder how much longer we might have had without Covid, but I recognize that this is not helpful thinking. Your story is very frightening about your mom. Things can just happen in an instant. Thank God the kind soul was driving down the road that day at that time. Thanks again for your very thoughtful support.
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Good luck with your Mom – I hope you find her new living arrangements soon.
Many of your words could be my own. My 94 year-old Mom’s memory is waning too. She still knows who we are but don’t ask her what she had for lunch or who called her that day. She won’t remember. She doesn’t wander; in fact she does the exact opposite. She hunkers down and will not leave her apartment though she could walk indoors for miles in the residence. She watches television all day long and talks about boredom and having no reason to live. COVID and quarantine are added stressors, which, of course, have only made everything worse. This virus has so many more victims than those who were unlucky enough to get it.
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Linda, I am so sorry how your mom has turned inward too and doesn’t want to try and enjoy the small things anymore including walking around the residence. For adult children watching this stage of their parents is heartbreaking, and COVID just ties our hands further. It just feels like walls in every direction. We are working on a lead, but SO much has to happen before there is an actual moving day. We are taking it step by step (and somedays there is no single step forward). I have hope that it will work out though. Thank you for showing your support and letting me know that I am clearly not alone. It means a lot.
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Melanie, you speak so lovingly of your Mom. I do hope that all will be well.
Thinking of you. Virtual hugs, Pat
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Hi Pat. It is heartbreaking trying to face that your mother doesn’t understand what is going on and you can’t “fix” that for her, as well as realizing clear conversations are coming to an end. It’s a huge and eye-opening transition. I know we’ll find a way safely through this though. Thanks for your support and hugs.
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Hi Melanie.I’m so sorry to hear of your mom’s decline, and I couldn’t agree with you more. When I get my head straight I’m going to write a letter to the newspaper about the mental health that is being compromised with seniors. I’m living it first hand with a sick husband in the hospital and the hoops I have to go through just to see him. Nothing to do all day, broken TVs that the hospital has connected to the TV rental service who don’t do service calls during Covid. They sign up to provide for a hospital then don’t want to do their jobs. I told the nurse I’m taking him home, looking at 4 walls all day, I’d go crazy. His doctor went to bat for me and got me 2 hour daily visits. Covid rules allow only 2 visits per week. And yes, more people are dying from other diseases that aren’t being treated. This is so wrong!
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I am so very sorry to hear what you and your husband are facing with his health right now Debby. THAT is concerning enough let alone the extra energy they make you spend just to see him. I’m so glad his doctor stepped up! The TV issues are pure negligence. I mean really, after all this time, the company and/or hospital should have a safe plan for service. Looking at 4 walls all day, everyday just accelerates depression. I’m quite sure they know this. I gave high marks to her retirement home for a long time as they did try and entertain and stimulate their residents, but the second lockdown was just too much. Years from now, medical studies and journals and books will uncover the depth of the losses (not just loss of life) because of the pandemic. Mental health is going to be a huge part of that. It’s eye-opening. Thanks so much for your comment and insight. I truly hope you can get your husband back home soon.
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Thanks Melanie. We must keep advocating and keeping this mental anguish happening, current til it’s drilled in.
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Love that. Thank you. ❤
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❤
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[…] Nine weeks ago, my 90-year-old mother tried to walk out the door of her senior living home at 3:00 a.m. They immediately placed her in Memory Care. The full story is here. […]
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Sorry about your mom.
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Thank you Janet. I really do believe that Covid accelerated her decline which is deeply frustrating, but it’s where we find ourselves. And I know we’re not alone. It’s different now, but she seems pretty good.
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That is so hard Melanie. I truly feel for you. My dad went through a slow decline in assisted living and died a few years ago. That was rough to watch and as soon as this pandemic began, I was so thankful that he was already gone.
Hopefully now, you and your sibs can visit your mother more frequently. I had the exact same questions as you. I eventually just settled in on giving my dad lots of love and reinforcement. Just as I did with my kids when they were toddlers, I didn’t correct him but would sometimes redirect if I thought irrational thoughts were causing him harm.
I look back on both of my parents final years full of regret yet believing that I did the best that I could for them at the time. Unfortunately, there seems to be no perfect solutions. Best, best, best of luck.
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It’s always nice to read a comment from someone who has lived through all the ups and downs of taking care of a parent. You get it (and I am sorry that they have both passed.) For too long, I second-guessed my decisions. But now, both my sister and I do lean on the words that we are “doing our best” because we are, and that is reassuring. I hope that it’s the same feeling for you too. 🙂 I am seeing my mom this weekend! It’s different now, I can’t really take her out too much (no errands etc.) but we still share laughs and the old mom shines through at times. She is doing very, very well at her new home and I’m looking forward to sitting outside in the courtyard with her (something the old facility didn’t have) and just pass the time together. Thank you Carol.
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