“You cannot make remembrance grow
When it has lost its root.” – Emily Dickenson
Part 3 of 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 over 81. 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 & calls started at her new retirement community. To catch up read: Coping With Dementia Part 1 and Coping With Dementia Part 2 .
When it became obvious Lenore could no longer manage at the retirement community after 3 yrs of problems, my husband (her only child) and I chose to bring her back to her old home to live with us. For the transition to happen, massive changes had to be made. When Lenore moved out of her home in ’02, she insisted we move in. No renters, no selling, no sitting empty. Doug would’ve inherited it someday, but we weren’t prepared to move. We also didn’t realize how bad her dementia was or we’d have handled it very differently.
She had left the little 1949 stone house filled to the rafters with a lifetime of accumulated “stuff”, plus her own mother’s things, and thousands of Doug’s books. The full basement truly was FULL. So were 2 of the 3 bedrooms. Clutter filled every nook & cranny. The bathroom floor was caving, the entire bathroom gross, and a realtor proclaimed the kitchen deplorable. And we had a larger home of our own with our “stuff” and things left by our 5 kids! What happened in ’02 still stuns and appalls us. We turned our lives upside down. Had to jump through legal hoops to get the several thousand dollars it took to make this home a place we could live without getting sick or suicidal. Our 3rd son and our only daughter with her 2-yr old girl rented the house they grew up in from us when we moved out. The energy expended in remodeling Lenore’s house, moving and trying to work every day made us both so sick we had to take months off from work to survive. Doug was paid, but I wasn’t, and our income decreased.
So the choice to bring Lenore from the retirement community to live with us 3 years later meant clearing a stuffed little room in the basement for our youngest son, who still lived at home. Then turning his room into Norna’s (Lenore’s grandma name). We knew she rose much earlier than I did, so in order to avoid further destroying my already-compromised health, we hired a woman to come each morning as Doug went to work. Bernie fixed Lenore’s breakfast, then took her out. The Adult Community Center was invaluable for activities and socializing. When Bernie brought Lenore home at noon, she wrote in the journal we kept. We accumulated 12 journals with details about Lenore’s year with us. Where she went, ate, who she saw, changes we noted. I began using the journals, too, as personal therapy!
First problem was Lenore couldn’t remember she’d been out. From the instant she saw me, it was, “Can we go someplace? I get tired of just sitting here.” I would read to her from the journal about where she’d been, but she got very antsy. She stared for long periods out the big picture window she no longer recognized as having been her own and often remarked how quiet the street was. In time I realized she meant how boring. When she talked about how big that tree across the street was, I thought it looked beautiful. We caught on she was afraid it would fall on our house. I fixed a healthy lunch and dinner every day, but more and more she’d beg to go out and eat, just to go somewhere. This formerly-frugal lady became a go-go girl! She couldn’t focus on TV shows for long. Books were useless when her mind couldn’t follow the storyline. We thought she’d be happier with us, but we soon learned how much she craved the visual stimulation of just watching people walk by. She’d had that sitting in the common area of the retirement community.
I’m normally very patient with anyone who has a disability. I can listen to a person stammer and try repeatedly to say something, and I don’t finish their sentences or get annoyed. I am able to deal with questions asked over and over when a mind lacks memory. I worked several years assisting folks with mental and physical disabilities. But they didn’t live with us 24/7. And this woman who had loved and helped our family for 30 yrs was the quintessential grandmother to my children. She deserved respect. So it wasn’t that hard at first. When I began to wear out, I’d pretend she was a client. But from the time I came out of my room she was there all day asking to go places. Even if we went to the store so she could “watch people walk by” and drove around aimlessly, talking about houses she lived in or how the kids were over and over and over, with no radio allowed in the car because it bugged her, even then, I was patient and respectful.
After a few weeks, we added afternoon help, too. Our daughter, 2 older cousins, and a volunteer church lady took turns taking her out for 2 hours, 4 afternoons a week. Lenore still recognized family when they came around. Though she did ask our daughter who her parents were. As soon as they’d drop her at home, it was back to “Can we go out?”
Many times Lenore was so sweet and loving, my heart melted. If she woke in the night and asked for chocolate and told me, “You’re a good person, Allene. Ya know that?” Or “I just love you. I don’t know what we’d do without you, ya know that?” I’d think of who she was inside before her mind was robbed, and how much she did for her loved ones. Then I’d be glad she was with us and not among strangers. I’d tell myself to remember that when my nerves got frayed. I tried hard.
But she hated our dogs. Why couldn’t Squiggy and Lydia live outside? Dogs are supposed to live outside. Dogs drove her crazy: barking, walking, sleeping. And our quiet little aquarium drove her nuts. The hum and the bubbles. Why didn’t we get rid of those fish? It would escalate into “You must love those dogs more than you love me!” And then she started opening the front door to let the dogs out. It’s against the law to let dogs run free… and dangerous! This drove ME nuts! We had a large fenced back yard where our dogs played. But Lenore always let them out front. She refused to believe there could be a law against letting dogs run loose. I can’t count the number of times I had to run around the neighborhood with leashes and a baloney-lure or drive around calling them with a car door open so they could jump in if they saw me. There were daily battles that I tried not to react to. But I began to feel I was suffocating. I’ll never forget the day I snapped and screamed at this poor demented old lady. I don’t recall the topic, but I knew it was the wrong way to cope! Funny thing is, Lenore snapped back, “Oh just cool your jets!”
Thank God for a wonderful women’s writing group I found in Jan ’05. Seminars or workshops almost nightly, and cheap! Boy, did I become a regular! Doug was coming home exhausted to a mother demanding to go out for the 3rd or 4th time that day, and as soon as dinner was done, his wife was off to write. Guess I owe my mother-in-law for improving my writing skills!
But Doug had no such release. His health worsened. I could see him cracking under the strain. He never raised his voice to her, but his face wore the pained exhaustion of a slave hauling stone up the Pyramids.
There was the increasing hygiene problem, too. Lenore couldn’t clean herself properly after toileting. She wore Depends by then, for urinary incontinence. Bernie helped her shower 2 or 3 times a week. But when she went to the bathroom if she had the runs, it was on the bathroom floor, tracked into other rooms. I nearly freaked when I found that. It wasn’t her fault. But we couldn’t live with that. It wasn’t constant, but recurrent bouts pushed us to explore the option we’d dreaded. Full-care facilities.
I think the ultimate breaking point for us was that we simply could not keep up with Lenore. On one of the hottest summer days she somehow made it down the steps with her walker. She hobbled down our street, crossed a busier street to the park, where she was near fainting from heat exhaustion when a kind jogger found her. Doug thought to check the park while I waited by the phone before calling the police.That was terrifying! And she was ill for days after.
But her incessant need to go out, to pace, to see people walk by was our final undoing. We were eating out just to appease her and spending too much. We thought if she got out every morning, plus 3 or 4 times a week, she’d be happy with us. But it never stopped. I couldn’t cook, clean or rest. We were driven by Lenore’s prime directive to be on the go all day. I’d give in. When Doug came home it was, “Let’s go somewhere. I’ve been here all day.” She was getting out 3 or 4 times daily, and more on weekends. One Sat. we got back from our 5th outing. As our car pulled up to the house, Lenore looked around and said, “Can we go somewhere now?” She was upset we had to go in and kept clanking with her walker over to our bed where we had collapsed in utter exhaustion, and begging us to take her out.
We were running a race with a marathoner who had no memory of how far we’d gone or where the finish line was. We simply could not win. And that’s what we finally realized.
The guilt we felt was agonizing while we “plotted” our betrayal. That’s how it felt to us. But we also looked forward to the chance to reclaim our lives, put the furniture back and maybe actually survive a few more years. What began as our little joke that we might die before Lenore, was becoming a real health concern. And it wasn’t funny anymore.
Coming Next: The Nursing Home: June 2006- Present [Part 4 & final in this series]
Coping With Dementia Part 1
Coping With Dementia Part 2
To read about Lenore’s family party, click on Birthday Fun at Ninety-four