One day, it is over. No more care choices to make, no more changes to adjust to, no more grieving the living while doing your best to stay connected at the same time.
No more wondering how long the journey will last, how and when it will end. One day, your loved one with Alzheimer’s will die.
For me, that day was August 2, 2016 at 11:30 pm.
Just the day before, my mom, sister, brother and I gathered to talk about what was to come. What new support would be needed since my dad was failing quickly now. That day my dad tried to talk and communicate more than he had in months. Some days he said nothing, other days a few words… we communicated more through gestures and facial expressions.
We took lots of family photos – assuming they would be the last that all of us would be in since my sister was in town from 3,000 miles away. We didn’t imagine my dad would be with us when she returned in a few months.
But I didn’t imagine he would be gone the next night either…
When I got the text from my sister that said, “We think it’s happening…” I honestly thought she was kidding. I also knew she wouldn’t joke about something like that.
It was a very long and emotional day. My dad was basically asleep or semiconscious most of the day and slipped away peacefully just before the new day began.
It was over… NOW WHAT?
For four years we KNEW he had Alzheimer’s, for 8 years before that we worried. We knew this day would come and it had.
But NOW WHAT?
As I write this, it has been three weeks since my dad died. Or “passed away”. Or “was finally at peace”. So many ways to say he is no longer physically present.
But words are hard to find when asked to describe how I feel now. The feelings are constantly shifting and changing, like a tide on the beach. Waves of grief and waves of relief. Tears and peace.
I am relieved for my dad – that he is no longer a prisoner of a brain that was failing him. No longer struggling to stand, to move, to speak. No longer dependent on others for everything from bathing to nourishment to help into bed. My dad was a highly independent, intelligent man – he would not have wanted the end of his life to be like this, not for himself and not for us.
I am at peace with his death because I know it is what he would have wanted.
I feel relief, empathy and deep sadness for my mom who lost her best friend and husband of 53 years. She rose to the challenge of coming to terms with my dad’s diagnosis, weathering the storm of his anger as his brain changed and he struggled to keep control, the pain of watching him lose his fight and become more withdrawn and quiet… Relieved that she no longer has to care for him and can get back to living.
Of course I was on this journey too. I’m writing what comes to mind as I think of “what happens AFTER ALZHEIMER’S” and my instinct is to make sure my parents are supported, as I have been doing through this process. “Leading from behind” as I often describe it – they were in the eye of the storm and from my slightly removed position, it was easier to find solutions and options.
But now it’s time to take off my problem-solver hat and take my place as the daughter. A daughter who has lost a father she loved deeply. A father she has been losing slowly for years and finally, physically, just three weeks ago.
There have been days full of tears and tissues. Days where I don’t want to get out of bed or off the couch – I settle in and watch Netflix, wondering when I might have the energy or desire to do anything else.
Other days have been gentler, more peaceful. I have been able to focus, to work, to not feel like I’m forcing myself to put one foot in front of the other and go through the motions.
My dad was an Astronomy professor and I find myself looking up at the stars more than I have before, thinking about and even talking to him to bring me some comfort and feeling of connection.
One thing I worried about when he was declining over the past few years was that when he passed away, my memories would be of him with Alzheimer’s… it felt like the longer he was sick the harder it was to remember him well. To hear his voice in my head, his teasing, his laugh…
I find the memories that come are mostly from his healthy days. From my childhood, from my adult years when he was well. This makes me happy and hopeful that I am healing.
Logically I know it was time.
It was for the best for all of us and for my dad. That this is part of life – losing a parent and learning to move on.
Emotionally it’s a process – and one that will take time.
You never know when something might trigger a memory and tears seemingly out of the blue. A song on the radio. A picture. A theme in a television show.
Moving forward I intend to let myself feel my feelings as they come up. To let them flow through me and heal me, but not control me.
I will continue to make my dad proud by following my dreams and seizing opportunities for joy, as he taught me to do and modeled in his life. I will share his kindness and lessons with my son and my nieces and nephews since he won’t be here to do it himself.
My dad had Alzheimer’s and was a part of my family’s journey, but it didn’t define him or us.
Our hearts will heal and his legacy will live on.
– Tara Reed