“I remember the day I realized something was wrong,” recalls Lisa. “We were going for a walk. Mom had a beautiful house, lots of flowers; we’d take walks in her neighborhood. On this particular walk, she pointed out her own place and said, “Now isn’t that a gorgeous home. Look at those flowers.” I said, ‘You know that’s your house, right, Mom?’ and of course she played it off beautifully and acted as if she knew.”
We sit across from each other with a box of Kleenex between us. I have asked for her time, asked to interview this willing, busy woman with a fast-paced job and teenager, to share about her experience caring for her mom who has Alzheimer’s. As Lisa begins to speak, I know I’m not supposed to cry and rob her of her own grief, but at times my own eyes swell with tears too. Lisa is strong though and really involved with her mom’s care. She speaks openly and candidly about the best and the worst. For her, there are two really difficult (scary even) parts. One is the hurt she feels when she sees those with the disease lose their voice to speak up for themselves — For their rights, for their past, their memories, their voice for reminding someone not to use the vanilla hand soap on her hair but to take the time to use shampoo. Also to not dress her in a sweater with a hole in it because Rosie was an immaculately dressed and groomed woman. Lisa also mourns the sweet, dear mom Rosie she used to be while relearning with each visit, the sweet dear person she still is.
Lisa tells me she has found ways to enjoy her mom and her mom’s life as it changes with the disease. She visits as often as she can and spends time updating her dad on her mom’s condition and needs. She is deeply involved with the detailed care that makes up human living: nutrition, personal hygiene, dressing, socializing, doctor’s appointments, missing hearing aids. The list grows every day too. One of the enjoyable parts is that during visits to her mom’s living center, she has befriended the group of men and women who also live, share meals, joys and sorrows and interact there. They have become something of a family, a trusting circle together. They share jokes and games. She knows pulling out colorful magazines can engage their interest; she knows some of their likes and dislikes almost as much as her mom’s.
A moment of extreme grace came to Lisa one day when she was leaving her mom. There was much guilt attached to taking her mom to the Alzheimer’s Unit, but she knew it had to be. Lisa would usually feel terrible when it was time to go home. On this particular departure, she realized that in a few minutes her mom would not miss her. She wouldn’t wonder why she had left her, where she was going, or when she was coming back. Rosie would go back to her regular routine as if Lisa had not been there and left. To an outsider, this may seem sad, but at this moment and from now on, it became a shining halo of light and hope for Lisa. Lisa had always referred to Alzheimer’s as “the demon;" that was easy to see, but now she had found the “angel” in Alzheimer’s.
Tips I learned from Lisa
It’s dangerous thinking to keep saying, “Well, not yet . . . not yet”. Lisa explained that it’s wise to plan sooner, though denial of disease progression is what most of us would do. Once her mother was diagnosed with Alzheimer’s, Lisa’s dad continued to care for his wife for five years. Although they did get on a waiting list for an Alzheimer’s Unit, they did very little else in the way of advanced planning. Once Rosie’s name came up, they had less than a week to pay deposits, find furniture, and dramatically change the way of life for a woman who had been independent for over 80 years.
Make an appointment to visit Alzheimer’s/Memory Care units but also be sure to drop in unexpectedly possibly after your appointment to see if things are really as discussed during your appointment time. “Often it is quite staged for your appointment, as I sadly found out.”
Hire a private duty, sitter/companion (even if it’s just for a few hours a week) to support the full-time living facility care. “The hundreds of dollars are really small when considering the thousands paid to the Alzheimer’s Unit,” she reminds us. “This person becomes the eyes and ears for your loved ones and even for other residents. I was probably their worst nightmare when my mom first moved in there, but I wanted her needs to be recognized. Each person living there is someone’s mother, someone’s sister and I will remind the caregivers of it when I need to.”
Learn A support group and/or class on caring for someone with Alzheimer’s, learning about clinical trials, etc. might have been really beneficial to Lisa in the earlier days, she agrees.“I have researched a lot, listened to the doctors, experienced so much,” she explains. “You reach a point with ‘education’ that you just don’t want to hear anymore. You just want to enjoy. I just want to enjoy being with her.”
The “don’t sweat the small stuff motto”-- it’s real! “You know how we go through life racing: work, kids, and we don’t make the time to have lunch with our mom?” Lisa’s advice is, “Have lunch with mom” or your daughter or friend, or take that drive or trip with your dad. You’re not going to regret those times.
Set the scene for leaving With Rosie it seems it’s better not to tip-toe around things. She still appreciates the honesty, but Lisa can’t always be completely honest of course. “You have to pick your battles. If I’m leaving I’ll say,’ Ok, Mom I have to go, but I’ll be back tomorrow.’ But if she says that she had lunch with my father (which I know did not happen) or visited with friends who’ve long passed away, I just agree.” People suffering from Alzheimer’s often say they want to “go home” even if they are home and they may mean to a place, a time, with people they remember and feel comfortable with.
See the “Angel” (and the comical side of things) “She still recognizes me.” She has trouble with some of the other family members sometimes. “When my mom sees my dad she might say, “You are SO GOOD LOOKIN’!” You just have to see the humor in things like that. Lisa says that she just has to check in with herself, every day. It’s a day to day thing.