14 Sunday May 2017
Posted in Life After Caregiving, Mom, Mother's Day
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They say a picture is worth a thousand words, but there aren’t enough words in the universe to express how much I miss her…
Happy Mother’s Day to my beautiful guardian angel… I love you, forever and always.
15 Thursday Dec 2016
I try to take December 15th off every year; I want to be able to sit with my thoughts and emotions without the rest of the world interrupting.
Four years ago on this date, my mom was freed from Alzheimer’s disease; it was December 15, 2012, that she earned her angel wings after a long, exhausting battle against a disease that always wins.
Memories of that day remain vivid. We were at Kobacker House, a beautiful inpatient hospice facility that cared for us with such compassion when we needed it the most. We knew the end was very near. Never have I been so overwhelmed with competing thoughts:
“God, please, not yet. I’m not ready to say goodbye. Please bring us a miracle.”
“God, please take her. She’s ready. She has fought hard and she’s so tired. I know that it’s time. Let her be at peace.”
“God, no. Please, one more day with her.”
“Please, God… take her home. Let her be whole again, free of pain. It’s time.”
By that Saturday, there was nothing left of her earthly shell. Those nine days were the most agonizing of my life.
That morning, I sat next to her bed holding her hand, stroking her head, and telling her how much I loved her. I whispered that it was okay for her to go, we would be fine, and I told her she had been the best mother a daughter could ask for. Her eyes were closed. There’s no way of telling what she could hear or understand. The day before, I felt her squeeze my hand every so lightly when I told her I loved her. I still don’t know if that was real or imagined; I’d like to think it was real.
As the morning wore on, a feeling washed over me – she would be going soon. I called our dear friend, Emily, and left a voice mail asking if she would come and be with us. Emily had worked for my mom many years prior and remained a constant in our lives, visiting Mom weekly long after everyone else had stopped. She is also a woman of deep faith. Jess and I agreed her presence would be comforting for all three of us.
Not long after leaving that message, shortly after noon and still at Mom’s bedside, that feeling enveloped me again – stronger this time. I called across the room to Jess, telling her she should come over. Seconds after she arrived at my side, Mom took her last breath. Her soul was lifted from her physical body right before our eyes in a moment that will remain etched in my mind forever. I’ve never experienced such a spiritual moment.
I had been holding the reins for all those years, and once it was over, I crumbled. The rest of Saturday and the ensuing days were a blur. Carrying all of our belongings to the car, arriving at home and feeling entirely spent. Lost. The grief was so powerful that my body was racked with physical pain.
One would think that after such a long debilitating illness, where we lost a bit of her with every passing day, I would have been prepared. Hadn’t I been grieving for years and years? I really thought when this time came I would feel a sense of relief.
Instead, I was hit hard with the realization that I would never again see her smile, feel her touch, or hear her voice. In my experience, this grief was entirely different than the anticipatory grief I’d been feeling for as long as I could remember. The finality of this was excruciating. I cried for days.
Four years later, the piercing, raw pain of those early days has faded, but in many ways, I miss her more as time passes. There are a million things I wish I could sit down and talk to her about – a decade-plus of things I need to catch her up on – and every year, that list gets longer.
In October, she would have turned 80. I think back on how vibrant she was before AD came into our lives. I always envisioned her as a “young” 80-year-old with a calendar full of travel plans and social activities. I could have never imagined how things would unravel at the seams. The lesson is – we simply don’t know what life has in store for us.
I think our long journey made me a better person in many ways – more compassionate and empathetic, and certainly more committed to serving others for the greater good. Life means more now; I want to be a part of something bigger than myself and I’m determined to leave some sort of legacy behind.
Christmas at Eason House, 2010
As an introvert and empath, it has always been hard for me to exist right at the surface – my thoughts tend to live much deeper in my soul. Following our Alzheimer’s experience, I have less need for idle chitchat and much less tolerance for things that don’t really matter. I suppose I’m more introspective than ever. I’ve never been terribly driven by money and it’s even less important now. I really just yearn for a slower pace and a less stressful lifestyle.
Today, as I reflect on life, love, and loss, I just hope Mom knows how much I love her and that she’s proud of the work I do to honor her legacy. I would love to be able to tell her just how much her story has touched the hearts of others. Her memory lives on and she continues to inspire not just me, but so many others.
30 Sunday Oct 2016
Posted in Caregivers, Helpful Resources, Mom, Products, Safety, Scam, Technology, The Early Years, Tips
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alzheimers, alzheimers and dementia safety, alzheimers products, dementia, preventing scams, technology for alzheimers caregivers
If you’re caring for someone with Alzheimer’s or another form of dementia, you know the phone can be a real source of consternation. Something as benign as a telephone can not only cause frustration, but also some rather challenging – and expensive – predicaments.
While still living alone and in the early stages of cognitive decline, my mom wrote checks to every single organization that called asking for a donation. It didn’t matter whether she had heard of the charity or not; if they asked for money, she gave. Ultimately, she fell victim to a scam that resulted in thousands of dollars in “donations” to a bogus food pantry/homeless shelter. Unbeknownst to me, it all began with a phone call from a woman who was preying on the elderly.
I recently had an opportunity to speak with Tavis Schriefer, Co-Founder and President of teleCalm. His company has introduced a service to help caregivers create a safety net for the person they’re caring for. The idea was born of Schriefer’s own experience caring for his mother when she was in the early stages of dementia.
To help understand the problem they were trying to solve, founders of teleCalm interviewed hundreds of caregivers during the design process. After all, who knows these challenges better than those on the front lines? The feedback led to a comprehensive, flexible, and easy-to-use service offered at an affordable price point.
teleCalm puts caregivers in control by allowing them to monitor and filter calls. The system considers every caller a “stranger” until they are added as a contact. Rules are then set up to determine how to handle calls. Not only can loved ones be protected from incoming telemarketer or scam calls, but outbound calls to infomercial ads and shopping networks are easily prevented.
Incoming calls from “strangers” can be directed straight to voice mail. Call history and voice mail messages are then accessible to the caregiver through the teleCalm app (available for iPhone and Android). The caregiver can also receive a text message each time a new voice mail comes in.
Today, teleCalm offers the following capabilities:
Developers are currently working on a feature that will notify the caregiver via text message if a call was placed to or received from a specific contact. For example, the caregiver might want to be alerted immediately if a call is placed to the doctor or a particular family member. Schriefer told me he expects the company to continue rolling out additional functionality as it becomes available.
The technology behind the service is a common one referred to as voice over IP (VoIP), and requires only an internet connection and small VoIP box (provided by teleCalm). The unit is about the size of a hockey puck, and set up is as simple as plugging in the power, ethernet cable, and phone.
teleCalm can be used with your loved one’s existing phone and they can keep their existing phone number. Service includes unlimited minutes, free long distance, and free international calling.
At the time of our interview, teleCalm was priced at $49.99/month with an initial $50 activation fee. Keep in mind that in many cases, this can replace existing phone service.
Does this sound like something that could protect your loved one and bring you some peace of mind? I can’t help but think it would have been useful for us when my mom was living independently. I would be curious to hear your thoughts. Feel free to leave a comment if you have an opinion you’d like to share!
