This is my fourth Mother’s Day without my mom. Although the immediate excruciating pain of losing her has subsided into a dull constant ache and longing punctuated by sudden and unexpected moments of intense grief, often triggered by a memory or something externally that I associate with Mama, I still miss her terribly.
But time and space has allowed me to grow into a deeper understanding, a greater respect, and a more complete love of this incredible woman that I was blessed to have as my mama. Continue reading →
Early on in Mama’s dementias and Alzheimer’s Disease – as I was grappling with understanding and accepting what was happening to her mind – it occurred to me that all humans go through an initial incline, a longer period of plateau, and then a final decline.
The decline mimics childhood in reverse, until if we live long enough we end up being like a newborn, totally helpless, totally dependent, unable to express ourselves except through the most primal language we humans have: laughter and tears.
I always told Mama that I’d do everything possible to make sure her second childhood was better than her first one. I did my best, making mistakes along the way (just like there are no instruction manuals for the day-in, day-out parenting of a child, there are no instruction manuals for becoming a parent to your parent, so you learn as you go), but assured that the one place I did not fail Mama was in making sure she knew she was loved, she was wanted, and I wasn’t going to leave her.
My hope is that in our simultaneous and shared journey of her taking two steps back and one step up and me taking two steps up and one step back that, in the end, my love, my care, my concern, my devotion, and my commitment was enough to make up for all the things I didn’t know, didn’t understand, and sometimes screwed up because of my own ignorance and ineptness.
This is not a journey for the faint-hearted. Once committed, even though no one ever really knows what they’re getting into, it requires a lot of tenacity and a lot of prayer. But it also requires unconditional love, abundant mercy, infinite patience, persistent gentleness, and unfailing kindness.
These are the life and character lessons parents learn from raising their kids. For those of us fortunate enough to complete the circle of life for our parents as they go gentle into that good night, we get the opportunity to learn these same life and character lessons.
It is a priceless gift and one I’m thankful to have received.
In Nick Norton’s blog post, “10 Things Caregiving Taught Me in 2013,” he lists some of the things he learned from caregiving, along with his mom, for his grandfather who suffered from Alzheimer’s Disease (his grandfather died in June 2013).
Several of Nick’s lessons resonated with me from my own experiences caregiving for Mama the last several years of her life as she suffered with congestive heart failure, vascular dementia, Lewy Body dementia, and Alzheimer’s Disease. The lessons I learned were ones that I could not have learned any other way or through any other of life’s experiences.
That makes them priceless, although I would not have ever wanted Mama to have to go through what she went through so that I could learn them. However, I consider these lessons that I learned as Mama’s last and lasting gifts to me, giving to and helping me, as she wanted to and did with so many other people throughout her time on this earth.
One of the lessons Nick and I both learned is that until you’ve been a caregiver for a loved one with dementias and Alzheimer’s Disease, you will never be able to fully understand what it entails.
In the caregiving realm, it is a unique experience. Not only are you dealing with normal aging issues and health concerns, but you are also actively losing a family member – a mentor, a matriarch, a patriarch, a counselor, a beloved friend – while he or she is still alive (in these neurological diseases, we actually lose them twice).
Unlike caring for and raising children, our loved ones with dementias and Alzheimer’s Disease regress instead of progress. Their communication issues increase instead of decreasing. Their complete dependence grows instead of declining. Their vulnerabilities, fears, and anxieties of a lifetime on this planet come back around in full force as their worlds get smaller instead of the dissipation a child experiences as his or her world gets bigger. Their suffering will never get better. Instead, it will increasingly get worse. There’s no way to fix it, no hope for improvement, no expectation of positive changes.
It is truly a 24/7 responsibility. There is no down time. And each journey is unique, so as caregivers we are constantly responding to and adapting to surprises, to the unexpected, to the unknown. It can be both extremely mentally and physically exhausting.
The whole experience can be a very difficult thing to actually wrap your mind around, to alter your thinking to adapt to, to, in short, accept and roll with on an even keel. In my experience, this is next to impossible for many people to do, deal with, and stay with for the duration.
That ability is one of the many things that makes caregiving for our loved ones with dementias and Alzheimer’s Disease unique. And it makes those of us who choose to do this unique.
Another of the lessons that Nick learned was to pray regularly. Although I’ve always prayed regularly, it was through caregiving for Mama that I really began to understand and practice Paul’s exhortation to pray without ceasing and Peter’s reminder to cast all my cares on Him.
My prayers became more continual, more deeply personal, and my relationship with God more intimate and more strong, as it remains and continues to grow in to this day and I intend for it to remain and grow in for the remainder of my life.
And looking for the joy in life was another lesson that, like Nick, I learned while caregiving for Mama. There were moments that we had the privilege of sharing together during those years that brought both of us joy and still make me smile when I think of them.
However, I find it much more difficult to find the joy in life in general now that Mama’s gone because it seems that life has gotten a lot harder for me since Mama’s death.
These days,I frequently ask God that if I don’t have any more value in this life if He will just mercifully end it and give me the peace of death until the next phase He has planned for me (so far, His answer has been “no” and I have to accept that until He says “yes”).
But I still try to remind myself to look for joy, even if seems elusive and gone for good, at least in this phase of life for me.
There are life lessons each of us as caregivers for our loved ones with dementias and Alzheimer’s Disease will learn. Let’s remember not to get so caught up in the day-to-day, some of which will be sad, trying, frustrating, and full of epic fails, that we miss the bigger picture of what we’re being given the unique opportunities to learn and grow from.