September 21st is World Alzheimer’s day. I don’t think celebrate is the right word choice. Many if not most of you in your lifetime will be a caregiver for and/or have a close family member suffering from this devastating disease. I think the best way to describe it is that it robs people of themselves, their essence. If we think about what makes each of us happiest, it is our memories. Our memories of loved ones, milestones, adventures, and just the wonderful everyday life shared with family and friends. This is rudely stripped from Alzheimer’s sufferers, eventually along with the ability to care for themselves. They are left with confusion, fear and sometimes anger.
I see Alzheimer’s depicted in the media. I especially notice the ads for Alzheimer’s symptom medication. There is usually a pleasantly befuddled, happy-seeming grandpa figure being lovingly attended by a daughter. I am sure this happens in some cases, as every Alzheimer’s journey is as unique as the person behind it. But this is not my experience. Let me tell you about my amazing father, and the awful road he travels.
Dad is the smartest person I know. He graduated high school at seventeen, volunteered for the Navy during World War 2, not knowing what his future would hold. He was given a battery of tests and quickly put into engineering school and the officer’s training program. His brain was deemed more valuable than his brawn, and rightly so.
He went on to graduate college in three years, and eventually earn a masters. Parts of his thesis were often found in engineering textbooks. He started his own engineering company, travelled the world with his beloved wife, survived two bouts of cancer, and lived a kind, full and compassionate life.
In his mid 70’s we began to notice a few signs. He would have a hard time coming up with words, and would sometimes get lost driving to his usual haunts. He also constantly lost his keys, his wallet, but we did not really count this as a sign, because he always did that!
He became a bit testy and agitated, not his normal personality. We finally convinced him to get an evaluation, and the answer was most likely Alzheimer’s. For a few years, he was still able to function fairly well. He stayed at home with Mom and part-time and eventually live-in, full time help. As he descended into more and more confusion, he became angrier. “I am so stupid! I can’t think!” was a popular refrain. We reassured him that he was not his disease, but you can’t fool a brilliant man who realizes he is losing his brain function. At this point you would still see sparks of Dad. His humor surfaced occasionally. Once at a restaurant, he said “You know the best part of Alzheimer’s? I order, and then when my dinner comes, it’s always a surprise!” Now that’s my dad.
Taking care of Mom and Dad so that they could remain in their home became a full time job for me and my sister. It was a huge fight to take away driving privileges, a common problem that almost every Alzheimer’s family will confront. Revolving healthcare workers, family finances and paperwork were a constant, endless puzzle. As Dad became more confused, he would not recognize the helpers in his home, and think he was being robbed. He began to wander away from home, often falling and injuring himself. Although we had hoped he could stay at home, it became too dangerous for his own and Mom’s safety.
The first nursing home Dad resided was not for him. He was out the front door and in the parking lot 30 minutes after he was admitted. They had an elevator that opened onto the “locked” Alzheimer’s unit. He simply waited until the door opened and slipped in. He looked like any visitor, and often got away with it. He was miserable, and scared, and even though Mom lived in a room just downstairs and spent all day and early evening with him, he wanted out. He became aggressive and was eventually sent to the hospital for a psych evaluation. The conclusion, um, he has Alzheimer’s. The nursing home then sent him back to the psych unit a few weeks later, stating he could not come back until his meds were “fixed.” Well, you can’t really “fix” Alzheimer’s, unless you want to totally drug someone into oblivion, which was not an option for us. We found another place for him, one that specializes in Alzheimer’s, instead of having it a side-line on their smorgasbord.
On the day Dad was released from the psych unit to his new home, Mom had a stroke and went into the hospital. This seems to be how life works in the tornado of the Alzheimer’s family. Mom continued to deteriorate, but was able to spend her last few months in the same nursing home, same room with Dad, before she died. I am thankful for that.
Dad has somewhat settled into a routine. At first he kept trying to escape, expressing his need to “go home.” I am sure this means, to him, his old life, his memories, his wife, his family. Most often now he doesn’t remember Mom, and we don’t usually talk about her with him. It seems the kindest option.
He has become less communicative, mostly just listening as we talk to him about family and life. I don’t know that he knows exactly who I am, but he knows I am someone that loves him. His body is more frail, he is incontinent, as most patients will become. He is no longer very interested in food, which used to bring him pleasure. He mostly sits and watches old movies or sports and naps. He is lonely, confused, scared, unhappy and occasionally angry, especially at shower time, also a common problem with Alzheimer’s patients.
Now when I visit, I don’t wake him if he is napping. I hope that maybe he is happy in his dreams.
The grandkids all call him Poppy. Many have been very active in the fight against Alzheimer’s. My nieces just walked in a fundraiser yesterday. Whenever they post about Alzheimer’s, it’s followed with #freepoppy. It always makes me tear up.
It seems a horrible ending to a wonderful life. That is Alzheimer’s. #freepoppy.