Click on photo to read post.
This week I will be sharing five gems of truth each day. Most caregivers, I believe, evolve in the process of navigating this lengthy journey. By the time we reach the final steps, there is a sense of responsibility to impart what we have learned.
Herb has done just that, sharing from experience as his beautiful wife's caregiver for many years. Enjoy the wisdom he imparts in this relevant list of "rules" for caregivers to live by.
As posted on DrLaura, ShareCare, and Intent
The journey begins with immense mental challenges, emotional demands, and requires us to learn all we can about this mysterious disease. By the end stages, physical strength is required which most of us find impossible to meet on our own. We need help, but we need more than an extra set of hands going through the motions of basic care.
"Because of our shared challenges and heartache, we have become kindred spirits."
Stone Benches: Understanding the Invisible Footprints of Dementia
As I speak to groups and meet others on this journey, there is a knowing look we inevitably exchange. In an instant, strangers transform into friends we have seemingly known a lifetime. By merely speaking the words, "My loved one has Alzheimer's disease" a window to a million truths is opened.
The beautiful tiered tray of finger sandwiches and fruit arrived at our table yesterday when I received the message. One of my daughters and I were enjoying a rare and wonderful lunch together in celebration of her birthday. I glanced at my phone and realized the message was from Dad's hospice. My heart sank.
I've been swimming these treacherous waters for over a decade now - long before many of my dad's caregivers were old enough to drive. I think sometimes people get the impression I pretend to be happy, this habitual smile glued on my face. After all, this is a horrendous disease - unthinkably cruel. Yet, amazingly, I truly have managed to find a current of contentment within the storm.
I view it as making peace with what will never be - my father is inexplicably changed forever. If I am to have a relationship with him, really connect, then I must learn to leave my expectations at the door and enter his world. It's also finding humor amidst the challenges. My father seriously gave away his eyeglasses, which incidentally took me literally weeks to repair? That's hysterical!
How was your weekend? I hope everything went as planned, but knowing this disease as I do, it rarely does. I am painfully aware we plan for the best and ride out the treacherous waves of the worst. It may seem ludicrous for me to post ideas for alternative celebrations the day after a major holiday. Sometimes we have to experience the reality of challenges before we are accepting of suggestions.
This certainly has been the case for me. Dad was not present at our family cookout this weekend. Instead we spent quiet, precious moments with him absent of a grand production. This picture captures a treasured memory - "Pop" enjoying a laughter-filled walk with one of his granddaughters after lunch. Although his presence is painfully missed at our gatherings, we have learned this is not about us. These lessons did not come easily, as I shared last Easter.
This is how my dad celebrated St. Patrick's Day. Put a hat on his head and he is transformed - the day becomes magical. The other day Dad and I were walking back "to the house" (otherwise known as his room a few steps down the hall) when he announced "Let's go in there" - the activities room.
No activities were taking place, not a single person was in the room - but it was bright, sunny, and welcoming nonetheless. Also, there were hats on the counter - remnants of the Cinco de Mayo celebration. Dad stopped to admire them so I placed one on his head, then chose one for myself.
This ushered in a spontaneous and lively dance!
May is one of the most beautiful months around here - flowers in every color imaginable have begun to bloom. Butterflies are excitedly dancing through the yard as our resident bunny feasts on newly emerging plants.
Last weekend my husband and I had worked most of the day planting new additions to our flowerbeds. We noticed an apparent leak in our irrigation system. Ugh! Another issue to deal with we weren't counting on.
As we were assessing the damage, Mama Robin landed in the water soaked grass and victoriously collected a worm which she then delivered straight to the mouth of one of her babes in a nearby tree. Doug and I stood motionless, taking in the awesomeness of nature and God's provision - while feeling somewhat proud our leaking irrigation made the task so effortless for this feathered caregiver. The happy chirps of gratitude were music to our ears.
"That's me!" Dad cheerfully exclaims. The aide could have said, "It's time to go to the bathroom," or simply gotten him up without acknowledging his presence - but she didn’t.
Instead, she chooses to bring a little joy to his day.
When we first began gathering troops for Washington D.C., it was important that a variety of roles be represented. This is why a memory care director, family members, as well as a hospice director will be traveling with us to attend the Alzheimer’s Advocacy Forum. There is another integral piece, essential in caring for dementia patients - memory care aides. These are the folks on the front line taking care of our loved ones’ physical, medical, and personal needs.
They are the folks that were up all night with my father and other residents who had the stomach flu last night - they are the ones that are sick with the virus today. These selfless individuals dance my dad to the bathroom and feed many of our residents every bite of their meals. They administer their medications, give them showers, have the ladies looking like China dolls, and make sure my dad’s music is on when he sits in his recliner.
I do not have to venture far out of the safety and comfort of Dad’s home at memory care to be reminded - communication with dementia patients does not come naturally. Our trip to the emergency room this week highlighted the fact that many folks, even in the medical profession, do not have a clue how to relate to or respect an individual with cognitive loss functions.
Those working in the memory care profession learn to enter their patient’s world.