They say bad things happen in threes. That was the case for my family in 2013. In March I was diagnosed with breast cancer. I was lucky. It was stage zero – completely contained within the milk ducts of my right breast. A successful lumpectomy and twenty-one days of radiation made for a cancer free me by the end of June. The second hit came in May. My thirteen-year-old niece was diagnosed with thyroid cancer. A successful removal and meds for the rest of her life…but all was well. She was also lucky. The worst came in August. After a slow decline over the prior couple of years, we convinced Mom to be tested. Our worst fears were realized with an early Alzheimer’s diagnosis.
Medications were able to slow the progression, but as we rolled into 2017, we knew we’d have to make some life altering decisions before too long. And so it was, in August 2017, we had to make a quick decision to move Mom out of the home she loved. The home she had worked so hard to make hers. Cleaning houses, watching her expenses and sometimes taking collected spare change to pay it off in a matter of a few years. We had to move her into a mental care facility.
My brother, sister and I struggled with the decision. We thought that the decision to take Dad off life support in 2014 would be the hardest thing we’d ever have to do. Boy were we wrong. Taking mom away from the home she loved. The life she knew. Putting her in an unfamiliar new “home”. This was by far much harder.
Even though we knew it was inevitable, it was still the most difficult choice we’ve ever had to make. And it really wasn’t a “choice”. Her decline over the prior few months was swift and steady.
So now we find ourselves on a new journey. Not knowing from day to day if she’ll be happy to see us or turn us away. Not sure she really knows who we are or is just playing along with whatever cues she is given. And the second guessing and constant critiques and undermining by extended family who have no idea how bad things had gotten. How unsafe things had become. How mom had gotten to a point where she needed constant supervision.
There are two quotes that keep coming to mind. Dad, a long time AA member and supporter, got through 32 years of sobriety taking it “one day at a time”. That’s how we are with Mom. We have no idea what the next day will bring so we find delight in the good days…and know with every bad day – the next day may very well change. And finally, Mom, since early in her diagnosis would state in (nearly) every conversation I would have with her (and often several times in a conversation) that “all you can do is the best that you can”. And that’s where we find ourselves…doing the best that we can. Often unsure if we’re doing the right thing…but always doing the best that we can. With the best intentions and putting Mom’s needs first. Regardless of the cost. Regardless of the heartache. Regardless of the criticism and second guessing.
Alzheimer’s is a horrible disease. There’s no script or instruction book for what’s going to happen, how she’s going to react, what we’re supposed to do. Every day we learn something new. About the disease. About Mom. About each of us. At least my brother, sister and I have each other as we go through this adventure. Not having each other would make this experience so much worse. They say what doesn’t kill you makes you stronger. That’s certainly the case with my relationship with my brother and sister. At least that’s the way I see it.