LOOKING BACK THROUGH THE EYES OF A PROFESSIONAL
Your Caregiver Stories
Today I have a treat for you. I want to introduce you to one of my most favorite people in the world! The amazing Pia Savage from Courting Destiny! We became friends through blogging and then cemented that friendship by attending the BAM Conference together. She’s bright, funny, extremely loyal, and I love her like a sister. She is here today sharing her memories from when she worked in a long-term care facilities. This post will really get you thinking! Don’t forget that I am always looking for caregiver stories. If you have a story you would like to share, I would love to publish it here. Please email me at Rena@thediaryofanalzheimerscaregiver.com
A long-term care facility Sometime in the 1990’s-early 2000’s Riverdale, NY Usually the first thing people tell you about nursing homes, long-term care facilities or rehab centers is the smell.
It’s one you never forget. But most old homes have been renovated and no longer stink.
“Good morning Mrs. Collins.”
Mrs. Collins was a flapper. Her room is filled with pictures of her in amazing costumes in the 1920’s. Some include a dashing man who became her husband. Mr. Collins owned a food exporting company. They sent their two sons to law and med school; their daughter married a lawyer. All three children live in California.
Children speaking for their cognizant, obviously very verbal parent at the intake interview is an easy sign that something’s off in the relationship(s). I’m well aware that many professionals speak to the children, not the parent. Mrs. Collins might have had men speak for her throughout her life. But I sense she guided them, and always had the final word. I try to get her to speak.She wants to but one son does all the speaking, even when I ask her a direct question.
Mrs. Collins is still very beautiful. Sweet to staff and fellow residents, her vascular caused dementia grows more apparent. She cries for her children who are aware of this. They will come when their schedule allows it or on the twelfth of never. Not that I’m cynical.
Mrs. Collins participates in activities or in the parlance of the state mandated notes is “an active participant.” The activities, even Occupational Therapy, (OT), drives me crazy. One day the activities director is going to sing the theme song from Barney, and I will lose it completely. I know this.
Mrs. Emilie Murphy was a garment worker in a factory in the city. She can spot quality clothes anywhere. Her tongue is sharp; she refuses to participate in activities but sits in the doorframe of her room watching the world go by. I have no problem with this as I think she’s making her own activities through her spiked observations. However, the activities staff is determined to make her sing or play a child’s drum.
Emilie won’t even go to the monthly afternoon dance. This is considered horrible. She’s not a child. No activity or dance is truly geared for the completely cognizant. I don’t blame her for not participating.
Her children come to visit. They look over her clothes. One takes home her laundry so it won’t get lost. I tell one of the children to come less often. Seven days a week is draining on the child. Emilie needs time to adjust also. The separation is difficult at first for both of them. Emilie puts down her daughter; her daughter, a linguistics professor, cowers. I beg her to go back to her life, and come a maximum of three times a week.
Soon Emilie is putting down staff and residents; her daughter acts like the self-confident person she is with anyone but her mother.
They buy her new underwear when needed. That is a really big deal to me as once a month I have to buy underwear for people who are running out.
If they have family, I’m supposed to call and tell them to do it. Most never do. Finding out how much money they have in their accounts, getting permission and/or seeing if the home will pay for it can take a day.
Much of the time I pay myself. It makes my life a lot easier and I’m all for ease. I didn’t go to grad school, pass the certification test while still in school, and get all those certificates in counseling to be an underwear buyer.
Emilie’s children and grandchildren take her out to meals, movies and go shopping. Those are real activities to me. But because she doesn’t participate in unit activities, I have to write her up as a passive observer in my state notes.
Every other woman is named Mary. Mary’s loud, abrasive to many, not the brightest bulb in the lamp. She tries. She tries to tell good stories. She tries to be funny. She goes to all the activities and actually likes them.
Mary’s told me all about her daughter, Mary Junior. Her pride in MJ is obvious. So I almost died the first time I met MJ. She is the developmentally disabled clerk at the Social Security office where I was an SSI Claims Rep. She would be sent home two or three times a week for being dirty and smelling. Forget about using the bathroom after she did.
We worked together for three years, but I’m back to single digit clothes now. She doesn’t recognize me out of context. The first time we met here I almost told her who I am, but thought better of it. I want her to be the person Mary likes to believe she is.
Blanche Rudnick is a Jewish professional who chose to live out her last days in a Catholic facility. She can be funny, she can be sharp. Her children almost never come. Soon I will call them to come as Blanche will refuse to eat. I will explain how if she doesn’t eat she shouldn’t drink anything otherwise she can drown in her own fluids.
I will strongly suggest that Blanche, having capability, sign a document saying that she wants no artificial nutrition or hydration. Both children will be very angry at me. One has never been here before; one has been here once. They live in the boroughs of New York. But damn they want their mother to live. Their mother doesn’t want to live.
I called the children because I’ve talked to Blanche a lot, and know she wants to see them. The end of life documents are new. We are the “most cutting edge” long-term care facility. Because it’s Catholic we do everything we can to preserve life. Only…there comes a time when life shouldn’t be prolonged.
I have prepared a packet of articles on the dangers of artificial hydration and nutrition that I give to all residents who have capability and family members. As I know two-thirds won’t read it I give what I call “the speech.” It’s a good speech; I can still recite in my sleep.
I think it should be Blanche’s decision alone, but I can only tell her that she has that right. I’m not sure that the children should even be here except to say goodbye. This might be a goodbye visit. Or would be if the son didn’t try to guilt his mother into not signing. She’s been here three years. This is his second visit. He lives a half hour away.
Blanche, a motormouth normally, hasn’t been talking nor has she been going to any activities or even to the hall to watch TV.
She’s such a strong woman. At 97, she’s entitled to moments of weakness. Not Blanche. She signs.
The most amazing thing happens. She’s her old self for a few days. Blanche even puts makeup on. I think, for the first time in her life, she’s truly at peace. Then the lack of hydration and nutrition put her into a “gentle coma—like state.”
The son is inconsolable after she dies. Nobody on staff would have ever guessed.
There are so many stories I can tell. I ran two halls. Eighty people. No way can I get to know all the people well. Much of my day is spent going to meetings, writing notes, doing initial intake interviews, ordering the damn underwear, and helping families adjust.
One hall is all dementia, and one is mixed. Some schizophrenics; one completely healthy 100-year-old who checked herself into the nursing home on her birthday. Her brother was a gunrunner for the IRA. He would leave guns with her. I go to her room after work, when I’m burnt, with some other staff members, and she tells us great stories. I would wish there was a better place for her to live but she has made the home hers
Every afternoon people cry for their mothers. I’m a good story teller, but run out of “the bus can’t make it up the hill” stories. Even the almost horribly demented remember a bit of these stories so I have to change them every day.
It makes me angry when people say that playing along with the fantasy gives them great joy. Maybe, some people, sometimes. It gives momentary solace, and that’s as good as it gets. I can never think of dementia as “a second childhood.”
A doctor is comforted by a doll, loves to wear sparkly clothes, and watch children’s TV. Yet somewhere in her is the surgeon she once was. It’s hard to explain how to treat people at the level they act, and respect the total person. Yet that is the thrust of my job, I think. Nobody dares say: “oh she’s so cute; I love watching her in her second childhood,” when I’m around.
There are so many different types of dementia and so many people I have left out. The wanderers who get written up just because they want to do what all of us want to do––walk and maybe get the hell out of the home. (Later there will be a wonderer’s garden.)
The screamers who won’t stop screaming and you can’t figure out why as they have become essentially nonverbal. Maybe they’re screaming because they are nonverbal. It’s not my job to sit and stroke their hair, but I do anyway.
The woman who is cleared by the home agency to go back to her apartment. I have a funny feeling about this and ask my supervisor if I can hold off on giving her the news. No. She celebrates for days. Then they change the clearance. She goes into a depression she never gets out of. She blames me. I’m angry at my supervisor for making me do something we both had doubts about.
The monthly interdisciplinary (IDCP) meetings are a joke. We spend just enough time on each person to flip our state books over to their page and turn the slides. Once I ask for more time as I have a question.
The nursing director calls me stupid; a few people proceed to make fun of me. I’m not a 20something who is new to the working world but a 40something who has worked forever. I look young. Many of the
inmates residents confuse me with their granddaughters. (Stupid is an oft used word; I don’t take it personally.)
When families show for the meeting we make a big show over the parent. It seems as if we spend so much time on each person. Ha!
I have become the home’s expert on abuse. A woman in an almost coma-like state would go home with her husband on weekends. Something didn’t look right about her when she came back. The husband is much loved by the staff. One morning he comes for an appointment so drunk I have to open the windows in my office. I tell him he’s a drunk and to come back the next day. He does.
Long story short: somehow I break down his defenses. I haven’t let him take his wife home for awhile or be in her room with the door closed. Sadly, she’s obviously not safe with him. Now he asks me for counseling. Unfortunately, his wife soon dies, but I get him counseling at the VA. One of my few true success stories.
I have many more abuse stories. Even an abuse by pizza delivery man who was extorting a woman for $1500 a week–to bring her food and keep her safe. One holiday weekend she fell and was in her bathroom for four days. She comes to the home for short term rehab. Gradually the story comes out. She never leaves. She is the definition of “unsafe to herself…” The pizza deliveryman is arrested and convicted.
A woman comes to the home to die. She doesn’t like me; I’m young, though not as young as I look, and vibrantly healthy. She does everything she can to make me crazy. I take care of her paperwork and help her with her bank accounts. I hate that part of my job, but it’s necessary. If you help with concrete services people will trust you.
On the day we know will probably be her last day she asks me to spend the night with her. I am honored. We talk all night. Finally, she asks to see her nephew. He comes out of her room shaking:
“She wants to give you anything you want. Her entire estate if you want.”
Really? The woman is worth several million dollars. It’s not legal for me to profit off her death; anyway, I would die myself before taking her money—though it’s tempting. I pretend to think about it for a minute:
“I want a letter. Just a letter stating something about today.”
He writes an incredibly beautiful one sentence letter.
I run a group for the elderly who are well. It’s on Monday evenings. They’re old Irish women for the most part. No way will they talk about their feelings. But while they tell the stories, while they sing songs, they become more and more comfortable and start talking about problems.
They become the model for a research study on how nursing homes, long-term care facilities, rehab centers should evolve. I would be proud if the home didn’t have the worst elevators; they take forever. Usually, I walk up and down the six flights, but I have to bring them back to their rooms in their wheelchairs.
It’s a ten and half hour day, and I make a game of getting the wheelchairs back to the rooms. If I do it quickly, and walk home real quickly, or get a ride I can watch Melrose Place.
Working at the nursing home teaches me the importance of bad TV.