I've always said I don't want to live to be a hundred. Why? Just so I can get my photo on Good Morning America...or is it the Today Show? Receive a letter from the president? Get a thousand "likes" on Facebook?
I've been helping take care of my mother-in-law for about five years. (See my first post about her here.) Ailsa was a lively red-headed 90+ year-old who drove one of those tank-sized cars. She went to the hair salon three times a week, lived alone in a huge apartment, and hosted daily Happy Hours in her teetotaler retirement complex. She could have given Betty White a run for her money. She was a hoot.
One day right before Thanksgiving--somewhere in her mid-90s--she was buying wine when her hip went the wrong way. She went down in the grocery aisle, got a ride in an ambulance, and was quite irritated to end up in rehabilitation. I visited her during her stay in assisted living, sneaked her out to maintain her hair color, gave her wine in a discreet coffee mug every day at 4 pm. She recovered from that broken hip and taught herself to walk without a cane. "I don't want to look old."
A couple of years later, she wasn't so lucky. A devastating stroke took her mind, leaving her body intact. Speech therapy helped a little, but the woman who could tell side-splitting stories was gone. Slowly, memories have faded. The one person she can remember is her late husband, gone almost 15 years. If you show her his picture, she will touch his face and say "Handsome."
Today she hit me. Refused to leave the breakfast table. Told me to go away when I tried to maneuver her to the bathroom. She says "no" to everything, even when she means otherwise. The once-meticulous woman screams during baths and protests when her nails are trimmed. It breaks my heart.
Of course, I don't take anything personally. Dementia makes all of us equal targets for her confusion and frustration. Ailsa is one of 47.5 million people around the world with dementia. The World Health Organization tells us that by 2050 the number will increase to 75.6 million. By 2050? There will be triple the number of Ailsas hitting their caregivers.
Ailsa lives at her daughter's home, with two shifts of caretakers every day. As you can imagine, the cost of home care is staggering, but so is any type of residential care. Dementia costs the U.S. over $604 billion a year, expected to soar as the population ages. That's just the medical price, not the emotional or health toll on family and caregivers.
I come for my "shifts" a couple of times a year, then I get to escape and go home. My sister-in-law, a tenured professor, has sacrificed some of her research, not to mention nearly all her social life. Symphony, theatre, restaurants--in a world-class city--have had to be put aside. Everything revolves around Ailsa, from diet choices to daily schedule. Not a smidgen of spontaneity.
Why do I tell you all this? Two reasons:
- Our turn is coming. While dementia is not considered to be a normal part of growing old, it happens. Let's first make clear our intentions for if/when it comes: make arrangements, sign the documents. Don't leave others to decide, it's too hard. When all is in order, get out and life your life to the fullest. Each day is precious. Make memories that will be passed along. Become a legend!
- Because...every now and then, neurons in Ailsa's feeble brain make a connection. She will suddenly snap alert, her blue eyes will blaze, and she will join us again. It's a temporary, but tender moment. And we all smile.
Dementia is such a cruel thief, robbing its victims of everything that made them who they are, and then, their lives as well. It steals all from those who love them, a little bit every day, forcing family members to function as unwilling observers of the disintegration process. The time I spent caring for my parents, afflicted with two different types of dementia changed me forever and not in any good ways. I pray for a cure or, at the very least, an effective treatment that would slow the disease in its earliest stages while some good function remains. I do not see any progress that has been made in the treatment of dementia since my dad's death in 1998. Excellent blog. Hugs to you, Suzy, for the love of Alisa.....
Posted by: Amy Johnsen | 06/12/2016 at 10:15 AM
Correction: Ailsa
Posted by: Amy Johnsen | 06/12/2016 at 10:16 AM
Amy, I know, I know. It's beyond horrible. I didn't know about your parents. It takes all time and energy, with no positive outcome. Thank you for the hugs. Much needed.
Posted by: Suzy | 06/12/2016 at 09:57 PM