A Belated Christmas Gift

In case you’ve never met him, this is my “little brother” Brad (I previously introduced him here and here). We weren’t particularly close growing up, but I have spent the past six years getting to know him on a level I hope that most siblings will never have to experience.

Brad was a freckle-faced, mischievous kid who had lots of friends, but I knew something was different about him with respect to his ability to learn. He went to a special school for a few years, but my parents never let on to any particulars related to his ‘special education needs’ until one day when I was about 12 years old. I don’t remember what was happening at the time, but Brad was having trouble with his school work and I think my dad sensed my annoyance with my brother over something trivial. I don’t remember Dad’s exact words, but he took me aside and urged me to be kind to my brother and try to help him out because life was harder for him than for most.

We three Boyles kids, Christmas of 1963 (l. to r. Cindie, Vivian & Brad)

I do remember promising my dad that I would try harder to be kind. Little did I know then just what that would entail, but Facebook reminded me earlier this week that six years ago I arrived in Milwaukee to look after my mom who was in the mid-stages of Alzheimer’s and ended up taking my brother to the emergency room at the VA Hospital in Milwaukee. That trip resulted in a series of appointments and a battery of tests, which led to a diagnosis of colon cancer and various cancerous skin issues, in addition to unmanaged diabetes. And so began my opportunity to keep the promise I made to my dad more than 50 years prior ago as I embarked on my ministry of care for my brother, driving him to and from various appointments in treatment for all of these problems. Somewhere along the way it was determined that Brad had experienced some mini-strokes and that he was cognitively impaired – the neurologist called it vascular dementia. It soon became apparent that it would be wise to move both my mom and my brother to live near me

Brad’s room at a nearby nursing home is scheduled for much needed renovation this summer, so the management asked families to help their resident clean out extra items. I stayed for a bit after we returned from Brad’s doctor appointment last week to take care of that. We tackled his nightstand together first, starting with a bag full of unopened cards that people had sent him. There were Easter cards, birthday cards and even a few from Christmas. I opened each of the cards and read them to Brad, reminding him of who people were if he didn’t remember them. Then, I packed up his winter coat and a few items of clothing that he doesn’t like to wear. There were a few t-shirts which were frayed and stained, obviously his favorite shirts to wear, so I took them with me and told him I would purchase new ones.

Someone had gifted Brad with cookies at Christmas. He pointed to the tin on his nightstand (pictured below) and told me he had saved it because he thought I would like it. I don’t know what it was about that simple gesture, but it meant a lot to me that he thought about something I would like. Honestly, even though he had eaten all of the cookies in the tin, it was like a belated Christmas gift.

Best Dementia Staging Explanation EVER!

If you’ve been following my blog for any length of time, you know I love to write about gardening and share some of the 4,987 pictures of flowers I have on my phone.

You also know that I cared for my mom in the last years of her life while she battled Alzheimer’s. I documented and photojournaled our journey on my blog (and a bit on Facebook too).

You may not know that I have also been overseeing the care of my brother who has significant medical needs, including a form of short-term memory loss called vascular dementia, due in part to unchecked diabetes.

Having both a mother and a brother with dementia weighs on me. Add a grandparent from each side of my family to the equation and every forgetful moment takes me to the edge of tears every time I forget something more significant than where I left my car keys.

"Caregiving is a constant learning experience."

Because dementia has struck so close to home, I have diligently sought to educate myself about the subject and have made it my goal to share with anyone who is interested any knowledge I glean or resources I discover.

I honestly think I have read nearly every book ever written for dementia caregivers. This book is my personal favorite.

If you check my Google activity log, you’ll know why the ads that pop up on my Facebook account relate to items specific to dementia care. I belong to two Facebook groups for caregivers. I even have a Pinterest board related to Alzheimer’s. I listen to podcasts and follow the blogs and Instagram feeds of others who write or photo-journal about Alzheimer’s and caregiving. I belong to a caregiver support group sponsored by Agrace, the hospice that helped take care of my mom in her final year of life. I have often surfed YouTube channels in search of information related to caring for someone with dementia.

Today I would like to share information from the YouTube channel of one of my favorite medical experts, Dr. Natali Edmonds, founder of a dementia support community called Careblazers. In this video, Dr. Natali discusses the various stages of dementia and the three most common tools for measuring where a loved one with dementia (LOWD) is in the course of their dementia decline. In my opinion, it’s the best explanation you will ever get in 13 minutes and 24 seconds.

If you are caring for a loved one with any type of dementia, I highly recommend subscribing to the Careblazer YouTube channel. Dr. Natali posts informative, compassionate, bite-size videos on most any subject a caregiver might encounter on their caregiving journey.

Losing Ground

My brother and I spent our morning and afternoon yesterday wandering the halls of the William S. Middleton VA Medical Center for three appointments. It’s nice to spend a little time with him. My brother is normally a bit reclusive in nature and doesn’t have much to say, but he’s such a nice guy with an undercurrent of humor that takes everyone by surprise, and a belly laugh that just infuses the room with a bit of joy. Yesterday, at each appointment, he found it belly-laughing hilarious to make sure everyone knew I was his OLDER sister.

He may be younger than I am, but I’ve been noticing some subtle changes in Brad lately. For instance, it’s harder for him to transfer from his wheelchair to either his bed or the car. When he goes to the VA Hospital he has to state his name, date of birth, and last four numbers of his social security number quite often. The pauses are getting lengthier as he searches his brain to recall the information. Sometimes he’ll look at me with a “was that right?” look in his eyes.

Brad’s trouble with memory loss is different than Momma’s, in that it is vascular, most likely due to mini-strokes. Brad’s heavy smoking history may have played a significant role in this. We’ve known about the strokes for about two years now, but yesterday, I felt his memory loss was more significant. At 10:00 am he had a vascular ultrasound performed on his lower legs to check to see how his diabetes has affected his circulation to his feet. At 11:20 am, when questioned by the podiatrist about how the test went, he couldn’t recall even having had the ultrasound less than an hour and a half ago. Then, during his afternoon routine  retina injection appointment, I noticed he  had trouble with following the doctor’s simple directions like “look up and to the left” or “look down and to the right.”

It’s really hard to watch both my mom and my brother losing ground in their short term memories. As difficult as overseeing their care is, I realize I’ve been given both a huge responsibility and an even larger privilege in caring for both of them.

Years ago (I was probably 12 years old), I remember Dad taking me aside when Brad was having an especially hard time with his school work, telling me, “Be nice to Brad. Try to help him out. Everything is just a little harder for him.”

I think my Dad would be happy to know I was listening.