My mother-in-law is now in advanced stages of dementia.  Many years ago we recognized signs of forgetfulness with mom and we questioned if it might be Alzheimer’s. We met our step-dad Al, her husband who was her sole caregiver, to discuss the signs and how we might help.  We care deeply for mom, and yet we felt that as step children we needed to be careful to not overstep our boundaries.  Al loved her very much and did the best he could with her best interests at heart.  We didn’t realize then just what kind of toll this was taking on Al.  Mom’s dementia became the elephant in the room that was never discussed.  She didn’t want to burden her kids and had expressed to Al that she wanted to keep this a secret.  As much as you can keep it secret.

Mom was well educated – 2 masters, taught high school for 40 years, Teacher of the Year, home interior designer.  She was a proud confident women, and loving mother and wife.  I have to assume she was embarrassed and frightened about what might happen

We’ve learned that often when the spouse is the caregiver they may not tend to their own needs because of the cost it takes to care for their loved one.  It was on September 25, 2012 at 1:47am that we received a call that Al was in the hospital. He had called 911 himself. When the paramedics got to the house, Mom didn’t know to open the door. The neighbors helped the emergency crew into the house and brought mom to their house to be safe.

Al was near death and on a breathing tube.  My husband Brad and his sister Andrea and I tried to take care of mom in shifts.  We had no idea just how advanced in the disease she was until we spent time with her 24/7.  She needed to be prompted to take medication, bathe and eat.  She was in a loop that she needed to go to the bank and to the grocery store.  The fridge had expired food, multiples of many things, even decorative baskets and unopened cans of food.   She was trying to use the phone for the remote and vice versa.  She had lost a lot of weight – which we now know is a sign because often they don’t remember if they’ve eaten and no longer have the ability to signal fullness or emptiness.  She repeatedly asked where Al was, and we reminded her each time that he was in the hospital.  That first night she asked “what was your favorite thing about today?”  A phrase that she often would ask throughout the years.  We believe she was still driving.

We learned quickly how tough dementia caregiving is.  In a moment, we inherited mom in probably a midlevel dementia. We tried taking care of her the best we could.   This was a blended family and there were many family members coming to the home.  People that mom, the consummate host didn’t know, that would rock her routine even more.

We placed her in an Adult Family Home “temporarily” not sure if Al would live.  Mom was anxious and extremely agitated.  In one moment she had lost her husband, her pets, her car, and her home.  After six weeks, we had a meeting with the owner of the AFH.  I remember my blood rushing as I realized we were being fired.  The AFH said they were unable to keep her; she was the only patient.  That AFH decided to shut down. Al spent 2 months in the ICU and died, never again able to communicate with us.

We attended our first HOPE support meeting in November 2012. We were spinning out of control.  We had placed mom in a new AFH now and we’re worried that she would not be able stay there either. We had little money, and were going in the hole each month as it was.  That night at support group was the first night since this tragedy that we truly felt we may get through this after-all. We left support group with a spiral notebook filled with notes, resources, and recommendations.  We left with the knowledge that there were others that had gone through this journey, that we shouldn’t feel guilty for doing the only thing we knew how to do, in hopes of doing our best for our mom.  We instantly felt better just being able to share our story and hear that we weren’t alone.

Jan Malone, President of Hope often says “knowledge is power”.  When our lives changed that night, I had a sense that I didn’t want to have more knowledge about this disease.  The last thing I wanted to know was how much worse this could get.  At a certain point, through the help of the support group with resources and understanding that eased anxiety and guilt – we were able to come to a place of acceptance.  This allowed us to truly cherish the time we do have with Mom.

Some looking at our story may think that Mom became a burden.  I believe that this experience has allowed mom’s kids to show her just how capable we are.  I believe mom would have a sense of pride knowing that her kids stepped up to the plate. We credit nearly all of our ability to handle this gracefully to HOPE Dementia Support.  This tragedy has become an opportunity for us to find out more about this debilitating disease – practice compassion and patience and to pay-it-forward to help others struggling through what to do.  My husband tells me the most important thing he has learned is to be pleasant and agreeable; and, that “people with dementia aren’t trying to piss you off.”

In January 2015 I began facilitating the Support group.  There is so much need in the community to help others.  I’m sure we would be here today without HOPE in our lives, but I’m certain that we would not be “here” in the same way.  HOPE has truly given us HOPE.  We can go visit Mom without the devastating sadness that she doesn’t remember us.  It’s the disease that’s robbing her of her cognitive ability and memory, but she’s still there.  Knowledge really is power.