“You cannot make remembrance grow
When it has lost its root.” – Emily Dickenson
This is the final part in a 4-part series on coping with dementia within our family. My mother-in-law did bookkeeping and taxes for local businesses until she was past eighty-one. Lenore took the grandkids every Sunday as they grew up. But by her mid-80’s Doug and I knew something was wrong. Part 1 describes the onset. By Part 2, we still had no real idea how badly Lenore’s mind was deteriorating, until the problems and calls started at her new retirement community. Part 3 details the year we brought Lenore to live with us and nearly destroyed our own health. To catch up, click here on Part 1 , Part 2 or Part 3 .
Doug was supposed to break the news to his mother before we moved her into Golden Living Center. (Gotta love those names) Paper work was done and her doctor felt the Early-Alzheimer’s Unit, Horizons, was best for Lenore. Though, her dementia isn’t technically caused by Alzheimer’s, the effects are much the same. This place was supposed to be very good as far as depressing full-care facilities go. Activities, a pleasant enough unit with windows and a patio area in an enclosed yard. But our sense of guilt was real. Could we trust them? What if she got confused and scared at night? Would she forget us? What if she wanted a piece of chocolate in the night? Every little detail seemed monumental.
Each possession of Lenore’s was carefully labeled. Not just clothes, but shoes, comb, glasses, everything. This task took some ingenuity, believe me! Favorite pictures, a bedside table, her TV, a lamp and her mother’s old wooden rocker were packed on a relative’s pick-up. We knew if we told her ahead of time, Lenore would get upset, then forget and have to be told again. But the day Lenore was to enter her new home, I was distressed knowing she had no clue where we were going. It seemed like the classic cruel trick. Doug, however, assured me it would work out ok.
That June day in 2006 we ate lunch at Wee Willies, our Saturday custom by then. Afterwards Doug told Lenore quietly in the front seat of our car, where she always sat beside him, that we found a nice place with a room for her. And nurses would help take care of her. He assured her we would come visit like we did at Redbud, which she didn’t remember at all. ( Part 2: Retirement Community ) I don’t think it sank in. She was just happy we were out driving somewhere.
When we arrived, the Horizons staff was very nice and showed us to her room. It was divided by a curtain and shared with one roommate. Lenore got the door side. Her roomie had the window. Lenore was surprisingly calm and interested. We walked around the open areas and said lots of hellos. They told her about BINGO, at which she’s great, and other activities they do. The only time Lenore seemed confused was when we went to hug goodbye. She looked shocked. “You don’t mean now, do you?” I almost cried. But after about ten minutes of assuring her over and over that we’d be back to take her out Tuesday, she let a nurse guide her away. They said give her three days to adjust. We left the Horizon’s Unit like parents having given up their confused child.
As Doug and I walked the long halls, lined with people in wheelchairs waiting to go to dinner, we had so many jumbled feelings we walked in weighted silence. But it was a beautiful June Saturday, and for the first time in a year, my husband and I rode together in the front seat, knowing we had more than a couple of hours to ourselves. We sat outside on the Irish Lion patio, and after a beer or two, we felt an indescribable weight washing off. Not that concern wasn’t there. It’s just that we’d been treading water so hard that when we felt relaxation for the first time, we didn’t recognize this sensation.
How is Lenore Now?
When we visited three days later, Lenore had forgotten this wasn’t always her home. Whenever we go, she’s thrilled and surprised to see us. “You make my day!”, she says. However, she isn’t content with just a visit. Lenore expects to be taken somewhere. Our go-go girl hasn’t changed! With our own health issues, we can’t go for these outings as often as we had planned. But since her sense of time is non-existent, she doesn’t get upset. Lenore’s just elated to see us when we show up. Various nieces visit and take her out occasionally, too. We take her to family events when they occur, and she knows the older folks. Lenore always goes through a litany of who has passed and says how she misses her sisters. She asks about our family, but we have to remind her names and ages of our grown kids and her relationship to each one. She enjoys driving by homes where she lived, but forgets where we’ve been as soon as we drive past. Certain topics are part of her routine. “There sure are a lot of cars in that parking lot.” It’s a big car dealer near Lenore’s facility, but she notes it each time. “There aren’t as many stars in the sky these days”. Doug tells her the stars are there, but city lights make them harder to see. “Where do I live now?” Will we be sure to walk her back to her room? “My mother used to brag about my memory, but she wouldn’t be so proud anymore”, she tells us. I think, oh yes she would, Lenore. We assure her we all have that problem sometimes.
After all our emotional anguish and physical exhaustion, Lenore is happier now. She seems less anxious in general. She can sit and watch people walk by to her heart’s content. Or pace the halls of Horizons Unit with her walker as long as she likes. They have activities and a sweet young man named Josh who plays the old songs on the piano after dinner. She loves that. Mixes him up with our son Josh, who looks similar and plays piano, but that’s probably a comfort to her. There have been a few glitches from time to time, and some roommate adjustments, but they listen to our concerns. And we feel like they care. Lenore has been hospitalized briefly a few times since June ’06. She’s had a couple of mini-stokes, but recovered to her usual state amazingly fast for a woman of ninety-five years. Deterioration is mercifully slow. We pray she’ll always recognize us, especially Douglas, her only child. We pray her eyes will always light up when we she sees us.
I think if we had not tried bringing Lenore to live with us, we’d be dealing with more guilt. But we tried until it nearly ruined our health and sanity. ( Part 3: Down the Rabbit Hole ) So this was the right choice for us and Lenore. Dementia steals the options we’d all prefer.
As I shared in Part 1 (Dementia: A Thief in the Night), Fred Rogers of “Mister Rogers Neighborhood” was a parenting mentor for us. A minister whose ministry was reaching children through the new medium of television. We have tremendous respect for his principles. When I read that Fred’s beloved grandfather had suffered dementia late in life, I was altered to read how he dealt with it. Fred would visit his grandpa and listen to the stories about his grandson, Fred, and how proud he was. Grandpa didn’t recognize this grown man as his Fred, but loved to talk to him. Mr. Rogers would listen and let the old man wander through time. Wherever his grandpa’s mind went off to visit, Fred Rogers loved the old man enough to let him be there. And loved him just the way he was. That changed my view of dealing with dementia.
Obviously we were not able live with Lenore’s creeping dementia and survive. But when we’re with her, I can more easily cope by knowing her spirit is the same one she’s carried through all the stages of her ninety-five years. And if she were able to control the dementia, she wouldn’t mean hurt to anyone. That’s not her true nature. The quirks, the embarrassing things she may say out loud that she never would have, those have to be filed under, “We’ll laugh about this later”. That file better be expandable! Believe me, it’s one of our best techniques for coping with dementia.
To read about Lenore’s family party, click on Birthday Fun at Ninety-four .