Friday, December 23, 2011

The "Goodbye" Angel

I was given an ornament at a Christmas party this week.  It was a fragile and delicate angel.  As I tenderly held it in my hand, I said to the woman who gave it to me, “Angels are one of my favorite keepsakes.  I have another very special Angel.  A resident, in one of my communities, crafted it for me from stained glass. We made ourselves comfortable on a nearby couch as I continued my story:

 Harold was a resident in his mid eighties, who never failed to make an impression of one kind or another on everyone that lived in the community. He was frequently loud, and he repeatedly irritated the other residents with his off color, offensive language.  He loved to talk, but he rarely listened.  He was gruff and cantankerous, and often ill-tempered, but he salvaged his disputable reputation by displaying his sweet and generous heart.

Harold was anxious to move in, but before he would become a resident, he negotiated with me to provide him a space in the building where he could continue enjoying his favorite hobby – creating stained glass ornaments.  I agreed.  Too few residents, especially as old as Harold, had satisfying diversions to occupy their time.  It was gratifying to see someone still enthusiastically pursuing such a productive pastime.

I will admit I had reservations about saying yes to his request. Harold walked with a walker. In order to maintain his balance, he had to lean over the center bar between the wheels, and stretch his arms to reach his tools on the table.  I worried he might drop the soder, and if it fell, it might start a fire.

 I spoke with my regional manager, and we agreed that I had to take certain precautions.  With the aid of the Director of Maintenance I claimed an unused corner of the activities room.   We gave Harold a long, heavy table, and then we found a screen to protect the area and to afford him some privacy.   He used a temperature-controlled sodering iron, but we insisted that he use it during regular working hours while a member of our staff was nearby. If the iron were to fall on the floor, someone would be close at hand to quickly retrieve it.  Finally, we supplied an iron stand and safety glasses to prevent any other unusual or unexpected mishaps. 
It was rewarding to witness Harold’s passion.  He ordered glass packs in a myriad of colors, and he bought rings of copper foil.  He worked tirelessly, glued to his table and tools, making flowers, and leaves, and his color filled angels.  He always shared his finished items.  They were gifts for another resident, a family member, or a staff member.

Harold visited my office at least three times a week.  The other department heads teased that he had a crush on me, but I believe it was because I listened to what he had to say.  Over the course of months, he told me long detailed stories of his career as a janitor in the Bronx. He complained incessantly, but I soon sensed that he only feigned dissatisfaction as an excuse to get my attention.  Whatever the motive, I gave him my time, and he accepted it as a precious gift.

As Harold pursued his hobby, he began to specialize in one simple angel silhouette.  He made a few for the soon to be erected Christmas tree, and then presented one to each department head in their favorite color.   When he asked me what color I wanted I, of course, said “blue.”

The day my angel was finished, Harold carried it to my office.  He also brought a small, clear plastic suction cup.  He adroitly sealed the suction cup to the panel of glass that framed my door.  Once the cup was in place, he painstakingly placed the angel on the hook in the center of the cup.  He took a step back to admire his work, and then said with a grim “ I’ve hung your angel.  She’ll protect you.”

 “From people like you,” I shot back, smiling.  Then, I joined him at the door, and gave him a big hug.

The angel hung beside my office door for months.  During that time, the suction cup held, and my angel never moved from it’s familiar spot on my window.

Then in early July, as I slid my key into the lock on my office door, I noticed something familiar lying on the floor beside my foot.  It was my angel.  It was still attached to the suction cup. Perplexed, I assumed it had come unglued during the night and fallen off the window. Grateful the angel wasn’t broken, I leaned over and picked it up.  I didn’t have time to reattach it, so I carried it to my desk.  “I’ll fuss with it later I thought to myself.”

Shortly after noon that day, I received a call from Harold’s daughter.  I knew that two days before, she had taken Harold to the local hospital with mild heart pain.  I was sure his daughter was calling me to report that he was being released and sent home.  When I heard the sound in her voice, my heart sunk.  She was crying.  She told me that Harold had died during the night.  As I turned to hang up the phone, I saw Harold’s angel lying on my desk. I caught my breath.  I thought to myself, “How very strange that it was this particular morning that I had found it lying on the floor.”

I have moved to two other communities since then; I will soon move to a third.  My angel travels with me, as do my fond memories of Harold.  Some might think it was a coincidence that it fell to the floor the night he died, but I sincerely believe, it was a sign from Harold.  He wanted me to know it was time to say “Goodbye.”

Saturday, December 17, 2011

Difficult Decisions and Crucial Choices - The Conclusion

 This is the continuation of Jill’s dilemma regarding the care of her aging Mother, Dorothy.  Dorothy’s memory was declining, and recently Dorothy’s doctor suggested she move somewhere with supervision such as an assisted living community. The family was suddenly faced with difficult decisions.   This is the conclusion to Jill’s story.

It was several months after our initial meeting that Jill and I met face to face again.  During that time, we had numerous phone conversations regarding her mother.  Jill told me that her brother refused to let Dorothy move into a community.  He was adamant that his mother was not going to be “put” somewhere.  He insisted that if she needed assistance that she move back to New York to live with him and his family.   They would care for her.

At the time, Jill was beside herself.  Her mother, who favored her only son, was thrilled to be going home to Syracuse to live with her “baby.”  Jill, on the other hand, was confident that the situation would be intolerable.  Her brother had three children, two of them in their teens, and he and his wife both worked.  Dorothy would be alone during the day.   Their kids attend gymnastics, soccer, or cheerleading practice most evenings, so again, her mom would be alone.  And on the infrequent days when everyone was home, Jill doubted that her mom would tolerate the incessant noise and activity.  Besides, they had no inkling how difficult her care would be.

 Four months had passed after Dorothy’s move to her son’s house in Syracuse, when Jill called me. She was frantic.  She told me that three weeks ago, her mom had slipped on an icy patch while climbing the front porch steps to her brother’s house.   Dorothy fell and broke her right arm.  After three days in the hospital, her mom was admitted to a rehabilitation facility to undergo physical therapy to recover her strength.   Although her injury was not life threatening, Dorothy’s confusion had increased.  Her lack of concentration made it difficult for her to remember her body strengthening exercises, so her HMO insurance denied the facilities request to extend her time for more therapy.  Dorothy was being discharged in ten days, and Jill’s brother felt she needed too much supervision to return to his home.

“Can you still take her? I could tell she’d been crying.  “ I will have to go get her in Syracuse, but I want to bring her back to you.”

We had little time, and lots to do before Dorothy could move into the community.  Jill had to complete the state paperwork with Dorothy’s doctor in New York, and I had to confirm with the social worker at the rehab facility that she was still appropriate for assisted living. Dorothy’s social security was not enough to cover the community expenses, so Jill applied for Medicaid Diversion. The Medicaid would pay for the extra care that Dorothy needed.  Medicaid, combined with Dorothy’s Social Security is enough to pay for a companion room.  It would take several months for the money to come from Medicaid, but Jill’s brother offered to supplement her payment until then.

I urged Jill to hire one of the local movers that specializes in moving seniors.   I assured her that they would not only pack for her, but would dispose of the items that Dorothy no longer needed.  While Jill was in New York getting her mom, they would move the necessary items from Dorothy’s home in Florida into the apartment that I had chosen for her.  They would unpack, organize her clothes in the closet, replace the items that go into drawers, put her few kitchen items in the cupboard, and hang her favorite pictures on the walls.  They would put each item in place
so that when Dorothy walked through the door, she would have a beautiful new place to live.  “Trust me.” I encouraged. “It’ll be money well-spent.”

When Dorothy finally arrived I was shocked by her appearance.  She had aged considerably in the last few months, and with her arm in a cast, she could barely manipulate her newly acquired walker.  She looked weak, and she seemed sad.  I sensed her age had caught up with her, and that she was having a hard time accepting her recent injury and new infirmities.  I hugged her, but she didn’t return my affection.  “My daughter made me come here,” she barked.  “I want to go home to my house.”

“Yes Dorothy,” I understand. “When you get stronger, that may be a possibility.  In the meantime, we hope you will try to call this home.  We want you to feel comfortable.  Come.  Let me introduce you to your new roommate.”

“I don’t want to live with anyone, “ she scoffed.  “ I won’t be here long, you’ll see.”
I walked with her as we slowly reached her apartment.   As I began to knock, the person on the other side opened the door.  “Madeline, you remember Dorothy.  She is going to share your apartment.”

Jill was waiting in my office; tears were running down her face.  “She is so angry with me.  We hardly spoke on the plane.  I can’t seem to do anything right anymore.”

“Don’t be so hard on yourself, and don’t feel guilty. Go home now.  Give her some time to adjust.  If you remember, I warned you this would be one of the hardest decisions you would ever make.  I had a male client who compared caring for his mom with a divorce followed by a bankruptcy; he felt dealing with his Mom was far more threatening.  I could only assume the poor man had already experienced all three.”  Jill smiled at last, grabbed a Kleenex and headed for home.

Three days later, Dorothy appeared at my office door.  “Everyone here has been very nice to me.” she said leaning on her walker. “Far nicer than I imagined, but living here isn’t my cup of tea.  I have packed my things, and I am going home.  Please call my daughter to come and get me.”

“I’m so sorry,” I said calmly.  “Jill works during the day, so I won’t be able to contact her until after dinner.  Go have lunch, play bingo, and enjoy your afternoon.  I’ll call her later this evening.”

 I never called Jill, and as the days passed, Dorothy forgot our conversation about moving out.  A care aid had discreetly returned her clothes to her closet, and her toiletries to the bathroom.  Dorothy never mentioned leaving again.  She and Madeline became inseparable.  They joined the book club, they played dominoes; they participated in the word game trivia, and together they took the trips to Wal-Mart. Dorothy was often still confused, but Madeline was always on hand to assist her.  The ladies continued to sit with Charles during their meals, and it was not long before they gladly welcomed another new resident to the table who was also from New York.

Jill’s relationship with her mom remained delicate.  During Jill’s visits, Dorothy made her daughter feel guilty for bringing her to our Community, and she continued to speak harshly to her. When Jill was not visiting, she was sweet and amiable. Jill tried everything, but there was no compassion to Dorothy’s treatment of her only daughter.  Eventually they reached a compromise, but their relationship was never the same.

Jill and I knew she had done the best she knew to do. There is no moral to this story because when it comes to finding solutions for parents, there is no right or wrong.  “Doing the best you can,” means just that.  There is no magic wand to make everything all right, and there are no absolute solutions. 

 If a genie appears one day to grant me one wish, it will be that adult children will begin to recognize that their parents will eventually age.  Preparing for the future, rather than reacting to a crisis, will make their lives and their parents lives easier.  It will be a win-win for all of us.

Sunday, December 11, 2011

Difficult Decisions and Crucial Choices Part 2

Part 2

Jill was visiting my community.  Her mother had declined mentally over the last few months.  Jill was now forced to admit that her mother might have reached a point in her life when she could no longer live alone.  Jill needed some answers to her questions about the next step for her mom.  She called me looking for options. This is a continuation of our discussion during her first visit to our community as outlined in my previous blog entry. 

 After I got us both a cup of coffee from the kitchen, we sat facing each other across the table in my office. 

“Is your Mom aware that her memory is slipping? “ I asked.

Jill hesitated for a moment pausing to find the right words. “Yes,” she said, “and no.” The day she couldn’t find her way home, I could sense her fear.  She didn’t say anything, but her voice was panicky.  We didn’t talk about the episode again.   On the other hand, I have often heard her mention that she forgets a lot, but she doesn’t seem to take it too seriously.  I think we both have been living in denial.”

I handed her a brochure that profiled our community.  The pages inside listed the prices and what they included; there were also floor plans of the apartments. I began to explain. “You will see a list of services inside that you can read at your leisure when you get home.  They are self-explanatory, so I won’t waste your time discussing them with you.  I'd like to emphasize there are things that the flyer can’t illustrate: the intangible advantages to living in an environment where other people suffer the same memory challenges as your Mom.  To begin with, she will be more relaxed and content knowing she's surrounded with people who occasionally display the same type of forgetfulness.”  

 “The residents will often compensate for one and other’s shortcomings without realizing it.  Their conversations may seem repetitive to you and me, but for them they're new and interesting.  They're accepting of each other and are willing to offer assistance and encouragement.  As an example, when one forgets a room number, there are neighbors to remind and even direct that person to their front door.  If your mom fails to show up for meals, her tablemates will alert a staff member. They may go so far as to admonish her if she doesn’t eat well.  On the other hand, our care staff will access her every time they interact with her, and the director of nursing will alert you if there are any unexpected changes.

“Another advantage,” I continued, “ is that your Mom will have a social network.  Statistics prove interaction with others delays dementia by almost 70% or more.  Our activities include word games and stimulating trivia that will also motivate her to think.  You may even be surprised in time to witness a significant improvement in her memory.  Once we urge her to use her brain again, she may become more like her former self.”

I could feel that Jill was impressed, but still hesitant.  I also understood that she was at the very beginning of her investigation.  We shook hands as she headed for the door.

 “I'm relieved to see you have become proactive rather than reactive.  You have a much better chance of finding a happy solution for your mother that will accommodate both your needs.  I'll be in touch in a few days.”

Two weeks later Jill brought her Mother, Dorothy, for lunch.  Dorothy was extremely suspicious.  I took them to my office, where I asked Dorothy to tell me a little about herself.  Her body was rigid, and she refused to look at me.  She focused her eyes on the wall behind me while she spoke.  She told me she was from Syracuse, New York, and she had moved to Florida after her husband had retired from Kodak.  Her son still lived up north, although her daughter and son in law had relocated not long after Dorothy and her husband were settled. 

Dorothy was not the least forthcoming in her answers.  I had to ply her with question after question to entice her to talk.  I looked at Jill.  The stress she was feeling was acutely visible on her face.  “Mom, isn’t this a pretty…”   

“I cut her off before she could finish.”  I knew her mom wasn’t stupid.  She knew what her daughter had in mind, and at the moment, she wanted no part of it.  I didn’t want Jill to make her more defensive. 

“Come Dorothy.  It's time for lunch. I have a special place reserved for you and Jill”

I had advised my dining services team that we were having guests.  As we entered the dining room, one of the wait staff walked up to greet us.  “You must be Dorothy,” the young lady grinned as she spoke.  Dorothy, surprised at the use of her name, managed to force a smile in return.  The young women took her hand and led her across the dining room.  “Come with me,” she said.  “There is someone I want you to meet.”  

The young waitress lead Dorothy, with Jill a few steps behind, to a table near the window.  Two residents were already seated - a man in his late eighties and a woman who I knew to be over 90 years old.  The two were tablemates and ate together at every meal.  The man, dressed in kaki slacks and a beige and green plaid shirt, stood up and pulled out the empty chair to his left.  “Hello Dorothy,” he said as she sat down.  “My name is Charles. This is my friend Madeline,” he pointed to the women sitting next to him. “We understand you are from Syracuse.  I’m from Buffalo, but Madeline is from just outside Syracuse - a small town called Walton.  Do you know it?”

I left them at that juncture, promising to return after lunch.

An hour later I returned to find Dorothy and Madeline still engaged in conversation while Jill sat patiently, finally smiling a little. 

“Dorothy,” I'd like to show you our community.  “I'm  such a show off, I'm always dragging folks on a tour.  Would you humor me for just a few minutes?” 

As we walked, I introduced Dorothy to the residents we met along the way.  Staff members, already alerted that a visitor was coming, chimed “Hi Dorothy” when they saw us coming. As we entered the elevator, a gentleman was leaving.  He had his over-fed dachshund in tow. “Does he live here?” Dorothy asked.  “Yes. His dog, Snooks, lives with us too.  I believe I remember Jill telling me you had a dog.”  She shook her head to say yes.

 I showed her the model of the one bedroom apartment.  It was decorated with furniture and intimate personal accessories to appear occupied.   A potential resident could easily visualize its promise from the well-placed furniture and appealing artifacts. I sensed from the expression on Dorothy’s face that she was beginning to appreciate what she saw.  I never once suggested that she move in.

I showed them back into my office.  I began to question Dorothy more directly.  “What would you like to do with the rest of your life?” I asked her.  She once again became defensive.  “Live in my house until I die,” she barked.  I shook my head in agreement.  “What if it became impossible for you to live there?” I questioned further.  She looked at me intently.  “I know I forget once in a while, but no matter what my daughter tells you, I'm still able to take care of myself.”   She glared at her daughter who sunk slowly into her chair.

“Besides, Dorothy continued.  “There's no way I can afford all this.” 

“And if you could?” I asked.  She looked at me intently, but she didn’t answer.

Jill and Dorothy left soon after our short discussion.  Jill mentioned before leaving that her brother sill lived in Syracuse.  She would call him immediately and have a serious discussion.  I sighed.  Jill had a long journey ahead of her, and there was only so much I could do to help.

Find out Jill’s decision and Dorothy’s future in the next few entries.

Sunday, December 4, 2011

Difficult Decisions and Crucial Choices    Part 1

If the doctor had said to Jill, “Your mother can no longer live alone.   You need to find an assisted living community or hire a personal care taker,” Jill’s decisions, although difficult, would have been easier.

Instead, the doctor said, “Your mother is physically healthy for her age, but I notice a significant decline in her memory since her last visit.  That decline may or may not continue. ”  Jill felt a sudden surge of panic as she heard those words. In the last few weeks, on more than one occasion, she had experienced her mom’s lack of focus.  Just last week her Mother had phoned her crying. She had lost her way while walking her dog and didn’t know how to find the house she had lived in for over thirty years.  Jill was able to “talk” her Mother home with a few simple directions, but the incident left Jill feeling uneasy.

Then yesterday, while they were shopping for groceries, her mom had mistaken Jill for her own mother, Jill’s grandmother.  She remained confused for several seconds before she snapped out of it and recognized that Jill was her daughter.   There had been other incidents, but Jill had brushed them off as simple signs of old age – nothing serious enough for concern.

Suddenly, the doctor is saying the changes may not be so simple after all.  “What does this decline mean?” Jill asked cautiously

 “You need to be alert to more severe memory loss or changes in behavior,” he responds vaguely.

“Then what?” she asked.  “Well,” he says, “you may want to consider getting her some assistance.  It is up to you to decide when the time is right.”

“Up to me,” Jill thought to herself.  “How can it be up to me?  This is my Mom the doctor is talking about.  She’s the parent - she makes the decisions, not me.”

The drive home from the doctor’s office was a long one. Sadly, Jill knew in her heart that, in less than 5 minutes, her life and her mother’s life had dramatically changed.

 When Jill called the assisted living community where I was the Executive Director to set up an appointment, we agreed on a time later that day.  She arrived early, and when I introduced myself, I could sense that her emotional state was fragile.  I invited her to my office.  “How can I help?” I asked as we sat facing each other across the table I used for interviewing clients.  Her eyes filled with tears as she related the story of her visit to the doctor and shared the details of a situation that I had heard a hundred of times before.

Jill was in a quandary; her mom’s memory loss was not severe enough to warrant a diagnosis of dementia, but it was severe enough that it was uncertain how much longer she could live independently. Jill was confused and apprehensive.  She didn’t know what she was supposed to do.  She worried that if her mother’s memory deteriorated further that she wouldn’t be safe to live at home alone.  Yet, she was convinced her mother would do anything to remain in the house where she had raised her two children.

What should I do?” she pleaded.  “If it is too soon for her to move somewhere, she will never forgive me.  If I don’t move her she may really get lost one day; I also worry she may leave the stove on and start a fire.”

“I am sorry,” I said, trying to console her.  “ I understand that this may be one of the most difficult decisions you have ever made.  I can help by introducing you to my community, and I can offer one of the possible solutions.  I will also give you the names of other communities.  You will want to make a comparison of prices and services.  Use the Internet if it helps, but don’t substitute that for visiting in person.  Pay attention to your feelings, and don’t allow price, services or amenities to unduly influence you. If you choose to relocate your Mom to a community, don’t dismiss the feelings you get as you walk in the door.  If you feel “at home” more than likely, she will too.

 “What about someone to live with her, or come in during the day” she inquired.

“Of course there are many reputable agencies.” I answered. “I will be happy to give you several pamphlets with contact numbers and information.”

I continued, “It is essential that you allow your mom to be a part of your decision.”  “You don’t need to go into great detail about your intentions.  As you narrow your community search, accept their invitations for lunch for you and your mom.  Your Mom will enjoy the attention.  Don’t pressure her by explaining that you want her to make a choice.  Allow her to enjoy the excursions as an adventure.  Luckily, it appears that time is on your side.  This gives you the opportunity to build a relationship with the communities that are high on your list.  Your mother’s choices are clouded and prejudiced by the images of HER mom in a nursing home. As she interacts with the residents and staff during her visits, she will begin to understand that assisted living today is much different.”

“If you consider a home help agency, include your mother in your personal interviews with a potential caretaker.  Watch for the interaction that occurs between them, and pay close attention to how well they seem to relate.

“Be careful not to get angry with your mom if she objects.  Assure her you understand how difficult it is for her to accept that a change may be in her future; empathize with the threat she feels about loosing her independence.  On the other hand, it’s essential that you don’t let her dissuade you.”

I offered to show Jill our community.  I was sure she would be pleasantly surprised. The dining room was exceptionally impressive.  It faced a courtyard filled with tropical flowers and greens, and the colors used for flatware and table decorations echoed the oranges, reds, and greens of nature’s d├ęcor visible through the windows.  The living room, the game room, the library and computer lab were also engaging.  Our apartments were spacious and tastefully decorated; the building resembled an expensive hotel  - certainly not a facility.

The staff members we encountered along the way were kind and friendly to Jill.  The residents we saw were busy with various activities.  Two ladies were concentrating on a jigsaw puzzle at the game table, a foursome was playing bridge in the game room, and a few less industrious people were contentedly watching the people come and go in the entry.

“Let’s go back to my office.”  I handed her a brochure as we sat down.  I asked, “Do you have a list of priorities for your mom’s future? What can I do to assist you with your dilemma?”  She appeared overwhelmed by my questions. I put my hand on her arm.  “Let's get us a cup of coffee.  We’ll explore this problem together.”  As I left my office and walked toward the kitchen, I understood that Jill, like thousands of adult children, was feeling lost and alone.  I was confident that, over time, I could assist her in finding a viable solution.

(I will expand upon the solutions for Jill in the next several entries)