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Alzheimer's robbed my grandmother (Elizabeth Groh/Grammy) of her memory and took her from us about 25 years ago. This was our family's first experience, on the front line, with this horrible & cruel disease, and we tried to navigate it as best we could. We met others along the way doing the same. We hoped and prayed for a cure back then, but the cure did not come in time for Grammy.

... then, Mom.

At first, it was the subtle changes we noticed in mom. Basic computer and keyboard operations that were once easy started to challenge her, she started to struggle a bit when following recipes, started questioning how to do some routine daily tasks, she couldn't remember if she fed the dog just 30 min earlier so she'd feed the dog again, and again (not that Keesha minded). And then there was the medication. She got confused with her daily medication and landed in the hospital; that was the wake-up call for us. We had hoped and tried to convince ourselves it was signs of normal aging.

It was after that hospital stay that she was officially diagnosed. When the diagnosis came, I wish we could say we were surprised but I think the family already knew what was coming. Mom was in denial (until the day she passed away). I think her denial was a sort of survival mechanism. Put it aside and pretend it doesn't exist and it might be less frightening vs. confronting it?

My relationship with my mother changed, again, quickly. My husband, the family, and I, being around to help out for years, needed to switch gears from mowing lawns and grocery trips to supporting her with her memory loss journey. We weren't ready, but is anyone EVER ready? We had an early diagnosis so we figured we had a head start this time. She started taking recommended memory loss medications and we stayed on top of her depression and anxiety with her doctors. My personal mission became finding ways to either help her remember (adapting her daily routines where we could) or just remember for her. For the recipes she used, we created a checkbox system on the recipe so that she could mark off the things she had added. We took on managing her medication dosing with a timer and dispenser. Dog's meals were premeasured and labeled by date and packaged one week at a time with a timed alarm for easy reference. In a way, we were helping her 'cover' but we viewed this as helping her maintain her independence as long as it was safe, and an attempt to keep her fear of what was happening to a minimum.

This routine continued for several years. Eventually what we had done to remind her to feed the dog, we now did daily for her to remember to eat and drink, boil water, brush teeth, timers, reminders, prepared and labeled foods daily, activity sheets and daily check ins with her. Paying attention to what things were disappearing and finding ways to help her remember until there were additional safety concerns. My relationship changed again as I added being her advocate, her voice, and her "remember-er" and we were checking in almost daily.

With safety concerns at top of mind, we made the decision to move her from her home to an assisted living community. This move was heartbreaking on so many levels for mom. It was sad and difficult to be the one to lead her on this new part of her journey. We tried to minimized the emotional trauma of the move by making it a slow transition, keeping her 'things' available in storage and staying with her in her new apartment until she got the new routine down. Things weren't ever the same after the first move; she didn't like it but settled in. With visits 2-4x a week, intermittent weekend stays with family, and the installation of an Amazon Echo Show in her room, we stayed close and continued our work together to navigate the progression of her Alzheimer's and do our best to stay ahead of and/or keep pace with the changes.

... enter, COVID

A stack of new and unpredictable challenges and changes appeared with COVID, quarantine and the impacts from social distancing and lock-downs. Isolation and the removal of meaningful social interaction can take a serious toll on anyone, but especially people with Dementia/Alzheimer's and the elderly who may already feel lonely, lost, and abandoned. It was important to find new ways to help her cope and lift her spirits with the reduction in social interaction and the stop in our routine in-person visits. During COVID, we noted an accelerated decline to where her short-term recall was reduced to about 15 seconds. She still had some long-term core memory (knew who I was, some family, pieces of her childhood and some of the most significant moments in her life.) Unfortunately, we also noticed an increase in her cognitive decline and keeping up with or ahead of it was a challenge. The Amazon Echo Show became our lifeline; I was able to 'drop in' on her daily during COVID. All 365 days of that year someone from the family sat with her on camera at some point during the day/night. We worked remotely and she watched TV, colored, etc. The care teams were stretched thin and it was the best we could do to help. This helped us stay connected and bridge the gap of loneliness and confusion. She had no understanding of a pandemic, why people weren't coming to visit (couldn't remember even if they did visit), and during lock-downs why she wasn't supposed to leave her apartment. We tried the occasional socially distanced visits in person but those were really confusing for her. We were able to bring her to our home for long stretches during COVID but it wasn't feasible to balance the amount of care needed for her and full-time jobs to take it on permanently. There will always be some level of guilt, some of us will carry, with the decision to have her in an assisted living / memory care community vs. at home (maybe/probably the reason for a long story/tribute here as well).

As we sat and watched her decline, there was a sense of helplessness that at times, was overwhelming. Some level of denial, sadness that she is fighting this horrible disease, frustration that she/we can't do anything to stop it desperate to help in some way, and scared that I was staring at my own (and other loved ones') possible future in the face. As things slipped from her memory, we let go of trying to help her remember. Calling out what or who she forgot only made her feel bad. We learned to accept the changes rather than fight them, to be happy with what she could do, to appreciate what she remembered, focus on anything/everything positive, and enjoy our time together. I used to get frustrated when she was mean, hurtful or angry; I grew to accept that it was the disease I was frustrated with and not her.

She'd often mention that she felt something was wrong with her but couldn't figure it out. She spent many days/nights, confused and afraid not knowing what was happening and trying to make things make sense. When she spent time with us, she'd ask me to stay with her, hug her. I tried to reassure her, include her, help her to feel/know she's still important, has a purpose, let her know she's not alone, hasn't been abandoned, and to just love her.

Last year, she made a final move from assisted living community to a memory care community. She wanted so badly to be with family and be out and independent that she became a flight and safety risk in assisted living. Her cognitive decline continued at a fast pace, and it became more difficult for her to communicate her needs with words or do the majority of daily tasks without prompting or help. The family, my husband, my sons, and I visited and called as much as we all could. We would bring her home for extended weekends. Unfortunately, she rarely remembered any details of our visits, day trips, calls, and extended weekends together. She was always disoriented, sad, and confused about why she was in the memory care facility it wasn't home. I'm still heartbroken knowing she felt, on some level, that we abandoned her (at least in between visits).

On August 11, 2023, my beautiful Mom's battle with Alzheimer's came to an end. In addition to her existing condition, she sustained a head injury. Her tired brain fell into a deep sleep the morning of August 10th, and she left for Heaven early the following morning. I was exactly where I prayed I'd be when the time came - holding her when she left so she wasn't alone. Like everyone who experiences profound loss, I'm heartbroken. We relive the past several years in our heads and work through all the "what ifs" of decisions made, if there was only a better medication and if there was only a cure. There are so many pieces of information from/for/about her I've collected over the years. Packing as much as I could into my brain so that I could try to represent her, be her voice, and hold her memories. Just like Grammy, the cure didn't come in time for Mom.
I believe the grieving process can be long and drawn out with Alzheimer's. We silently grieved every time a part of mom was taken from us. We grieved when her short-term memory was nonexistent. We grieved as she lost her ability to know how to make a cup of tea, brush her teeth, how to color in a book, how to bake, how to water plants and weed the garden, read the newspaper, address birthday and other greeting cards that she was always so thoughtful about sending regularly. We grieved when she no longer understood what some of those things, mentioned above, were and when she could no longer find words to communicate. We learned to read her facial expressions, hand gestures, mood, single words, and tone instead of standard sentences.

My family's journey with Alzheimer's has been a long, multigenerational, one; we were able to support mom through our faith, support from friends, specialists, family, and various Alzheimer's support groups. We cannot express our gratitude enough to everyone who has touched Mom's life and helped her and the family on her journey. We've learned we are not alone and that there is strength in numbers.

Please consider supporting Alzheimer's association and their work to find a cure. No one should have to endure this cruel disease. We desperately pray for a cure and a world without Alzheimer's soon.