K: Knowing the Residents

K  Knowing the AL Residents

 

My mother has been in assisted living since the beginning of last June, and in visiting her twice or more a week, it’s natural that we’ve gotten to know some of the other residents there as well.

It isn’t an easy acquaintance to make. A number of them are nonverbal, and if they do speak, it’s in a sort of murmur of disconnected sounds with perhaps an understandable word here and there. But several are also in earlier stages of dementia and are able to make some sort of conversation, even if it rambles, repeats, and goes ultimately nowhere.

But even those who are nonverbal have gestures and facial expressions that are their own, and we also know them by these.

There’s a form of attachment that grows when you see the same people constantly, and this makes it difficult when they suddenly disappear. It’s happened a number of times since June. We notice that we haven’t seen a certain person in a few days, a week. Sometimes a resident will have had to be admitted to the hospital, as happened with my mother’s roommate several months ago. But others don’t come back. It isn’t as though we knew them as friends, but we know their names; their faces are part of our memories. And we miss them.

We aren’t family members, so I feel a little uncomfortable asking the staff, What happened to Veronica, or Evelyn, or Nick? I don’t know whether, ethically, they’re supposed to reveal any information. I did ask once or twice and was told “she left” or “he needed more care than we could give him.” Code for: nursing home. A disturbing thought, especially when the person seems to be physically healthy. But assisted living is expensive and not covered by Medicare. And so when someone’s money runs out, they leave. It’s something I don’t like to think too much about. I admit to feeling complacent about the good home my mother’s in now, but will I have to change that when her money is gone? How do their families feel about the necessity, and how do they make that decision?

We sometimes have to remember that the people here were not always the way we see them now. These are people who have lived rich, full lives. Each of the residents has, outside his or her door, a framed plaque with a brief biography. These are both fascinating and sobering. You learn that one man who moves slowly and stiffly and doesn’t interact or speak much was once a pilot in the military. One woman was a schoolteacher, another a writer. My mother’s roommate, a little Indian woman, was acquainted with Mahatma Gandhi and was socially and politically active in India.

And yet where is all that now? Where does a life go when the memory of it is gone? It’s left to us, their children and grandchildren, to be the “memory keepers” for them, to remember their lives as they lived them. I provided the information for my mother's biography when she moved in; I hope that I can continue to be a good enough steward of the memory of her life.

"J" is for Joy

J   is for Joy

Two days ago I wrote about “happy things”  in my life that kept me going through sad times. Happy moments can take place in the dementia unit, too, moments of joy that lighten and give color to days that are often monotonal.

I wrote about Bob, the man with the lovely singing voice. The first time I heard him, I was sitting a table in the dining area with my mother. He was standing, leaning on his walker, in the space between the dining and living room areas. He’s a tall man and pretty much commanded the space. He looked downward, paying no attention to his surroundings, and began to sing very softly. I soon recognized “How Great Thou Art,” a hymn that I love. I started singing softly along with him, and soon a few other residents and CNAs joined in, too. I felt it as a transcendent moment, one that brought tears to my eyes. His voice was quiet and a little shaky, but it was easy to imagine how good it must once have been. A few people applauded when he finished, and he started in again singing “Wind Beneath My Wings.” But I don’t believe he was responding to the applause; he was in his own world, one that connected with his past and with God, and one that absorbed him for those few minutes.

Then there are the games: trivia, playing catch with a huge plastic ball, and always, always Bingo. I never understood the popularity of Bingo with elderly people, but they respond to it and look forward to it. There’s a Bingo game after supper nearly every night. No prizes are awarded to winners, only the joy of being involved in something and getting out of their own minds for a while.

Once a week there’s a flower delivery and a chance for residents to help in trimming and arranging them. There are walks in the enclosed garden in the warm weather, benches to sit on. My mother’s roommate picks blossoms from plants and bushes and gives them to my mother or puts them in her hair.

For most residents, the greatest joy is receiving visits from their families and friends. Their faces bloom and they come alive in a way they don’t otherwise. I’ve seen people who constantly complain or seem very confused become calm and lucid with their visitors.  

Joy isn’t only for people with sound minds and bodies; it’s a blessing that even those with very few other capacities can share in if they’re given the chance.

"I" is for Intimacy

I    Intimacy in the Memory Care Unit

Love and intimacy are vitally important to everyone, including people with dementia. One of the cruelest aspects of this disease is that it makes intimacy and loving relationships nearly impossible. Even if the affected person is still able to remember his or her closest family members, the possibility of forming new relationships is almost completely denied to them by their loss of short-term memory. How can a person make a friend if she doesn’t remember the other person’s name or even that they met before?

A memory care unit in an assisted living facility is a small, closed place. Residents spend their entire day within it. The unit my mother is in has a central area with a living room and two separate dining and activity areas. The residents’ apartments are arrayed around this area. This is where they live: eat, play games, and socialize. There’s also a small enclosed garden area for the nice weather. With somewhere between twenty and thirty residents, people have a lot of contact with each other. Yet I don’t believe I’ve ever heard any resident call another by name.

There are what pass for groups, or pairs. We often see the same people talking together or having supper at the same table. But the conversations are quite limited and often seem to consist of repeated comments.

But the human heart still needs to connect.

Marie and Raymond

After my mother first moved in to the MCU, I visited her nearly every day, and I became aware of a man and a woman resident who appeared to be a “couple.” Marie and Raymond were in the early stages of dementia. They could speak well and hold conversations. They intrigued me. At first I wondered if they were married, and if so, whether they had a room together in the MCU. Then I heard Raymond refer to her as “my future wife.” I thought this was enchanting. Would there really be a wedding? They were inseparable. They sat on the couch together, at the supper table together. They would walk in the garden, go on group outings together. Sometimes you would surprise them embracing in another room or in the hallway. She called him “darling.”

Then one day I noticed that Raymond wasn’t there. Days passed and he didn’t return. I asked a CNA, and she said he’d moved to another place. We had a speaking acquaintance, so when I saw Marie in the garden, I asked about him; she said, “Yes, that was a blow. I thought we had something going, but I guess not.” I felt bad for her, and wondered whether maybe Raymond’s family hadn’t approved of their relationship.

Shortly afterward, though, Marie struck up a “friendship” with another man there. That is, she began “hanging around” him, sitting with him, laying her head on his shoulder as they sat on the couch. Yet he remained much less responsive than Raymond had been--and less aware of what was going on. He seemed only to tolerate her. One day I greeted her while she was sitting with this man, and she said to me, “Have you met my husband?”

So what did it mean? I found myself rethinking the relationship she and Raymond had had and wondering just how real it had been. Had they really known each other in the way real friends and intimate partners did? Had they been able to share parts of their lives with each other? Or had it just been an attraction that was forgotten once they were separated? Probably it doesn’t really matter--they had had each other for a while, had maybe the only form of intimacy that they were capable of, and maybe it was enough for them. I hope so.

Agnes and Bob

They actually are a married couple. Both have fairly severe dementia, are nearly nonverbal, and seem largely unaware of their surroundings. But they have an instinctive feel for each other. Bob knows when Agnes isn't near him and gets upset. 

I didn’t know they were married for a long time. They don’t share a room, and for quite a while they didn’t even sit at the same table for meals. Why this was I don’t know. But one day walking by their rooms I noticed that they had the same last name, and that was the only clue I’d gotten. Then I remembered that they always sat side by side on one of the couches. And at Thanksgiving their two daughters came into the unit. It hits me hard to try to imagine how it must be for their children: to have both your parents suffering from dementia at the same time. The sense of loss I feel is doubled in their case.
 

One day a number of people came to visit them; the group was leaving shortly after my husband and I arrived, and we noticed they had instruments. Someone mentioned how much fun they had singing. Bob has a beautiful voice; maybe he once sang in a choir or even professionally. Perhaps Agnes did, too. And in some way they were still able to share that with their family.

Minnie

Minnie is another resident with fairly advanced dementia. She doesn’t speak more than a few words every now and then. But she has her own little family of baby dolls. She used to carry only one, but the number has expanded, and last week she had an armful of four. She sits with them in a chair, holding, rocking, kissing them. She brings one or two to the dinner table. She tries to feed them. The CNAs have learned to gently take them from her so that she won’t be too distracted to eat. “The baby needs to eat, too,” they’ll say. “I’m going to take her and feed her.” That makes Minnie happy. She has found her own way to love in the MCU.

Happy things...in difficult times

H IS FOR Happy Things… in difficult times

 

My first week of blogging in the A-Z challenge has been a little--heavy? (H word!) So I feel like lightening things up a little bit today, the day after Easter. Because the truth is that even amid sad and difficult times we can find things that make us happy. I’d like to concentrate on a few of those today.

A good cup of tea, especially when taken with something good to read.

The first taste of chocolate after my Lent deprivation.

Always, always, a good book.

Movies that make me happy: Singin’ in the Rain, White Christmas.

All the white blossoms on trees extending up and down the street.

Birds flying.

Having a good, focused day of work.

Finishing up a work project.

Starting a new work project.

Crocheting.

Watching my favorite teams, the Celtics and Red Sox, win.

 

Hot summer days, warm summer nights.

Dogs--even my neurotic little nut.

And most of all--my wonderful husband!

Today is my day to take time out and say how grateful I am for all the little and big blessings in my life.

Gladioli

G   Gladioli

  

My mother’s hands clip long slim stems

of fresh gladioli. The August flower.

A white one today, to mark the hour

of her birth. A greeting from the earth.

It is her birthday. As if they know,

the flowers spread a fantail before her, red.

Her body bends like stems

battered by too much rain.

She clutches the stalks.

She talks of years when her body too swayed

with the grace of youth, not the bending of age.

It is her birthday, ninety-five years made

of her life, years she climbed stage by stage

the way these flowers open, one by one.

Soft hands curling open bright fingers

rippled stems separating as the blossoms open

each tier replacing the one below

as we all replace each other on the earth.

Nothing that’s living dies.

The limp dry leaves eke life back

into the earth, into the womb of the bulb.

These silent respectful standards

in reds, whites, yellows,

surround her son in his resting place.

She kneels before him, her hand on his,

 whispering a prayer. The flowers listen.

They reach upward as she can’t,

 an extra lift toward the ear of God.

I wish I could save them: stockpile glads

in a crystal warehouse for her

against the dimness of winter,

the endless days of loss.

F   Fiblets

 

I remember how liberated I felt when I discovered the concept of “fiblets” and learned that they were not only acceptable but considered therapeutic with people with dementia. How freeing to have permission to lie!

For the past few years I had been struggling with my mother’s increasingly deteriorating sense of reality, constantly trying to reorient her to the “truth” when it eluded her. One problem was her lost memory of her family members who had died, and the most wrenching of these was my brother.

My brother passed away of a massive stroke at 2008 at the age of fifty-five. It was a devastating shock to all of us. I was afraid at the time that it would literally kill my mother, but she was surprisingly strong and held up through the ordeals of the vigil at the hospital and the funeral. In retrospect, I believe that this was when her deterioration really began. She soon forgot what had happened and from that point on her memory and cognition got worse and worse.

I felt at the time that it wasn’t right to lie to her by omission, by not correcting her delusion. When she would ask about David, I would gently remind her that he was gone, then have to watch her face collapse and hear her agonized question, “Why? Why him?”

So I was relieved and happy to learn about fiblets—little white lies told with compassion. The rationale was wonderfully simple: because people with dementia can’t hold onto new memories, they tend to forget what happened only a minute before. All those times I had told my mother the truth, it had never stuck: she would ask the same questions a few minutes later. So what good did it do to upset her in the moment? Fiblets take advantage of one of the blessings of memory loss. They  allow the kindness of going along with delusions. So when she talked about going home to make dinner for David, I would tell her that his wife would do that. If she asked how one of my aunts was, I’d tell her she was fine.

Fiblets are part of dementia care, and I’ve seen them used well in the AL. If a resident wants to use the phone to call a cab to take her home, she’s told that the phone is out of order or that someone else is using it right now. Then the staff distracts her, and she forgets.

I used to think I owed it to my mother to be honest with her. Now I know that compassion, more than honesty, is what she really needs—and that it’s just as valuable to the caregiver as to the patient.

E: Explanations and Evaluations

I don’t know why I feel I have to offer explanations for my mother to the staff and even other residents. Her problems and behavior are certainly no worse than those of anyone else there, yet I seem to need to excuse her to people: “She can’t hear” (pretty obvious); “she loves her sweets”; “she’s always used a lot of salt.”

It’s as though I feel defensive about her when there’s no reason to. The staff there deals with people in all stages of dementia and in need of all kinds of aid. My mother doesn’t stand out in that way. But when she first moved in I was so nervous about how she would take it, whether she would be argumentative or depressed, yet within a week the nurses and CNAs were telling me how delightful she was and that they loved her. When she would sit in the dining room and keep calling out “Where’s the food? We’re hungry!”, I would cringe, but the CNAs would laugh, lean over her, and patiently tell her that food was on its way. When she called out for a salt shaker, they would cheerfully bring her one. And they made sure her coffee (her drug of choice) was served to her with dinner. I learned quickly that no explanations were called for.

*       *       *          *          *

            When she had been in the AL for about six months, the nurse gave me an updated evaluation and treatment plan for her.

I felt like a parent receiving a bad report card.

All the things she needed help with, all the things she couldn’t do, all the physical limitations she had--I had known all these things, of course, but there was something about having it come from another party that just made me feel bad. She’s incontinent; she doesn’t hear well; she has to have her food ground up because she can’t chew; she needs two people to help her up and into her wheelchair…. The list went on.

But then I reviewed my own list of good things: she’s taking her medication now, which I had to fight with her to get her to do. She’s eating well, and eating the food they give her; when we lived together all she would eat was sweets and soup. Her mood is much better now.

I know, of course, that the “report card” was not at all critical. It was an assessment. It just didn’t tell the whole story.