So Long For Awhile

July 13, 2009

Today was our last day for this visit. With four scheduled visits plus errands and phone calls we’re in a zombie state. Tomorrow we return to Denver to get our Colorado lives in order and perhaps a little rest. We’ll return to Florida in a few weeks for the next step along the journey.

Our prayers were answered – Mother had a good day. Pain was manageable, no evidence of psychosis, she knew us and gave us a couple of smiles with her age-related confusion. I asked her how old she felt this morning. “Oh, fifty,” she replied. I told her that she was actually 98. “Well, that’s old enough to die,” Mother said firmly.

All afternoon she was worried about finding her “little, drop earrings.” I know she hasn’t had earrings on for at least three years but she was  definitely thinking about those earrings today.

As the aids were getting her into her wheelchair for dinner she asked me if she had on too much rouge – something else she hasn’t used in years. This one totally cracked us up. Wonder what she was planning for the evening.

Evelyn exhibits at least three personalities – sufferer, psychotic and demented. Some days we see the same “face” all day; on others we see a continual cycling of all three.  Each time we arrive we wonder who will it be today.

We arrived after church to find her in a reclined chair out in the hall. Sharon Fenney, the assessment nurse from Palm Beach Staffing has just completed her visit. An aid will start tomorrow at 10am.

Mother is able to answer questions but dozes off if we’re not engaging her interest. Sunday dinner is roast pork with gravy, potatoes anna and green beans. As soon as the first bite of pork hits her tongue Mother says, “That’s enough of that,” and spits it out. She drinks some lemonade (we were sure she wouldn’t), eats a stale dinner roll, and a few bites of potatoes. When I tell her there’s peach cobbler (actually peach crisp) she smiles and says, “That should be good. Who made it?” She eats all the peaches but spits out the oaty topping. She finishes a carton of milk.

Mother is complaining of pain in her leg, knee and “bottom.” She had a pain pill while Sharon was there. We once again find no pain patch on the knee. Before we leave for a lunch break we ask the staff to put her into bed and check about the patch.

Aside – LPN Jennifer remembers Mother from early in her years at Palm’s Edge. She recalls how self – sufficient Evelyn was, that she could identify staff by their voices, all the things she did without assistance, etc. All the memories remind me of how much she’s lost in the last seven years.

When we return from lunch Mother is asleep – very obviously in dreamland. Without warning she was screaming out, “Let loose of me,” while waving her arms or grabbing the bed rails and shaking the entire bed. I go to her “good” hearing side and try to wake her, saying, “Mother, you’re having bad dreams, why don’t you wake up?” I see anger on her face as she grinds her teeth and swings her arms, saying, “Leave me along! “ We never were able to wake her or stop the behavior.

After doing a few chores we decide we’ve done what we can do for one day and leave.

After church this morning we were updating Dan, Mother’s minister, about her situation. He stumbled around trying to find the right words for her life-clinging determination. Finally he said, “She’s stubborn.” Judy commented, “She’s dug in her heels.” “Exactly,” Dan responded.

What a Day!

July 10, 2009

We must have looked like a sorry pair as we wound down from the day. Our dinner waitress, someone we’d never met before, offered us her guest room.

Our day started with an appointment with a representative of Hospice of Palm Beach County. There has been so much conversation about calling in hospice we wanted to learn more about their programs, procedures, etc. before we were faced with a decision. Nurse Ruth was informative and soft spoken. The facility we toured was calm, roomy and soothing.

When we arrived at the rehab center Sue was wheeling Mother out of therapy. She said they did some work but weren’t very successful because Mother felt nauseous and was gagging. Mother isn’t very talkative, says she feels sick and doesn’t want anything for lunch. We coax Evelyn to drink a Boost before the aides get her back to bed.

I had made an appointment with Aycock Funeral Home in the afternoon. We liked Gayle. She listened, asked good questions, didn’t hard sell at all, simple gave us options and worked up a price list.  We picked out a casket and decided on other details. I felt comfortable with the attitude, facility and costs but wanted to talk to Bill before we signed any papers.

Mother was still sleeping when we returned to the rehab center. At one point she was holding her right wrist with her left hand. She started flailing her arms and yelling, “Let go of me. Let go!” We were never able to get her to understand that only she was holding herself down.

When the aids tried to get Mother into her wheelchair, she got very agitated, trying to scratch and bite. Dr. Harpalani walked into the room. I said, “Mother, Dr. Harpalani’s here.” She immediately calmed down and put a smile on her face. When he questioned her about  how she was she answered, “I’m good.” Dr. H sat down with us for an extended conversation about the future. Basic points:

  • He feels Mother isn’t yet ready for hospice.
  • Hospice will treat the pain with morphine in ever increasing doses to the point that it will kill her.
  • At max she can only qualify for rehab another two weeks.
  • He notes that she if very very itchy, prescribes a steroid cream which the facility has available in less than an hour.
  • He wants us to talk with the VITAS – the other hospice provider in this area.
  • He told us about a couple of other possible living facilities he would like us to look into.
  • He believes we should return in 4-6 weeks to access where we are and what Mother will need in the future.
  • Told us to come by the office on Monday if we had any other concerns, just call and let them know we’re coming.

While we talked with the doctor I tried to help Mother with dinner. She ate an entire pulled pork sandwich with meat piled about 2” high, also baked beans, fresh fruits and milk.

Soon after concluding with the doctor we say good night and leave. Make another call to Bill to update him before going to Nick’s Tomatoe Pie for an excellent dinner and a guest room offer.

Fine Line

July 9, 2009

We don’t think we’ve yet identified the fine line of enough meds to manage the pain but not so drugged Mother’s totally out of it. Today she was pretty out of it and slept almost the entire time we were there.

When we arrived she was sleeping in her wheelchair with lots going on around her. Judy worked hard to get her to wake up enough to eat lunch. I shredded some of the bbq chicken breast and made her a sandwich on a dinner roll. She ate the whole thing, also a dish of pears, a cranberry juice and most of her milk. Took me 55 minutes to get her to eat that much for lunch. She was so relaxed it constantly looked like she would drop the sandwich but she didn’t, not even one piece. We did note that she was having more trouble getting things to her mouth.

We did witness increased pain as we approached time for her next pain pill (Darvocet). Did not note any evidence of pain as she slept.

After lunch Evelyn was taken to physical therapy. The occupational therapist had worked with Mother at breakfast. They added milk to her cream of wheat, put it in a cup and she drank it. (also had toast).

After therapy Evelyn got her hair washed and cut. The hairdresser said everything went pretty well. After all the activity Mother was in bed and sound asleep when we got back from our late lunch and rainy drive. We stayed an additional hour and a half and she didn’t move except for her chest rising and falling with each breathe. She was so asleep the nurse held her 6pm meds.

Two additional ladies were moved into the room while renovations were being completed on their room. Inside and out there’s daily evidence of updating and improvement.

Mary Kay stopped to see Mother this morning but we missed here by about 20 minutes. Spoke with her and returned a call from Thelma Miller.

Lessened Pain

July 8, 2009

After last night’s consultation with the doctor a number of pain medication dosages were changed. Plus we added Lidocaine patches for the left knee. We witnessed evidence of pain but there was a definite lessening. Mother’s response to the pain was also more appropriate. Not a single scream or plea to, “My Lord.”

Mother did seem a little more drugged, her speech a little more difficult to understand and she was not always in the same decade. She wanted to know if we had talked to her mother and if her sister Ellen was coming for the weekend. Ellen died more than 20 years ago, her mother more than 50. While she was eating dinner she suddenly asked if Bob had to be in the hospital very long. His surgery was only seven months ago, we were amazed she even remembered anything about it. On the other hand she did remember that Dr. Harpalani had been in last night and that he said she didn’t have to go to the hospital.

“I had two eggs and toast this morning,” reported Mother out of the blue. Maybe she did, maybe she didn’t. Lunch was a resounding failure – three or four bites of creamed peas, two bites of carrots. Her highest level of frustration for the day occurred when I urged her to eat more and offered orange sherbet. She drank all of the apple juice at once but wasn’t interested in finishing her milk.

We met with Lois, the dietician, requested milk on every tray and several other changes for Mother’s meals. Somehow we mentioned we hadn’t been able to get a second pillow – certainly not her responsibility. By the time we came back from lunch Mother had a second pillow with a crisp white pillowcase. I think we’ve found someone who knows how to get things done.

We stayed to help Mother with her dinner. I mixed the ground chicken with mayonnaise and made it into a sandwich. I gave her a quarter at a time telling her it was finger sandwiches. She almost gulped the first. Since she wasn’t much interested in the sliced carrots I mashed some of them and mixed them into the next sandwich, Mother was none the wiser. The pineapple upside down cake was quite well received by a lady who says she doesn’t like cake. Once again the orange juice quickly was consumed plus all the milk. Mother fed herself the little sandwiches, otherwise I did everything else including holding the straw to her lips.

We witnessed Evelyn receiving meds twice today, she was very cooperative. Also responded well with staff positioning and transferring her. No dramatics. When we arrived she was dressed, in her wheelchair, sitting in the hall.

One situation bothered me today. As we were leaving for lunch a male nurse (?) questioned us about the DVT. Said there had been great concern among the staff this morning and conversation about sending her to the hospital. They had even called Dr. Harpalani. After last night I don’t know why this is an issue this morning. The man we were talking to had no idea this was an old clot. Communicate, communicate.

We checked with the bookkeeper, Mia, that Mary Kay had brought money over for Evelyn’s personal account. Also checked that Mother’s on the list for a shampoo and short haircut tomorrow.

We’re driving back to the rehab facility after going out for a hot dog. When we’re about six blocks away the cell phone rings. It’s Denise, the director of nursing, she says that Evelyn needs to go to the hospital immediately, the ambulance is there to take her but Dr. Harpalani says there is no way she is to leave the facility until he gets there. I try to tell her that I’m only two minutes away, please wait until I can deal with this in person. She must be related to Mary Kay, they share the same hyper-panic personality.

We don’t even get to the nurses’ desk before Denise is on top of us explaining that an ultrasound shows that Mother has a DVT (deep vein thrombosis) in the left leg, they can not treat a DVT at the rehab center, it doesn’t make any difference if she has a filter and she absolutely must be sent to the hospital emergency room. She’s pressing me to overrule Harpalani’s order. She’s also saying that the ambulance is here now and if they don’t take Mother now it might be hours before they come back.

The EMTs were the best, most rational people in this situation. They called their supervisor several times to say they were on a delay. They also gave me several pieces of important information that helped give balance to the situation. Although Dr. Harpalani told Denise he was on his way she had called the facility medical director for an order to transport Evelyn.

I stay to try to deal with staff and decisions while Judy hurries down to see Mother. She’s actually having a much better day, expressing some pain but not screaming, no psychosis, reasonably coherent although not always in the correct decade. Mother immediately tells Judy she’s had visitors – the Jacksons. Mother thought it was Gladys (who just turned 91) but in actuality it was Jonetta and Mary, Gladys’ daughters. We saw them as we rushed into the building but didn’t take the time for conversation. Judy explains to Mother that she probably needs to go to the hospital. Evelyn says she hates that but isn’t it fortunate we’re here with her.

I explain to the EMTs that I have every reason to believe Dr. Harpalani has a valid reason to say don’t transport. Fortunately the doctor arrives before the EMTs require a decision. He’s had hospital records faxed over that document that this is the same DVT that was treated in February and to prove to the facility that there is a filter in place. Dr. H is unhappy because Denise hung up on him. She does not emerge from her office once he arrives.

Once the non-emergency has been dealt with Dr. H, Sharon the LPN, Judy and I sit down to discuss other Evelyn care issues. Much time is spent on pain management.

I need to make further notes on meds and doctor conversation but too tired to do so. More later.

“Please Shoot Me!”

July 6, 2009

“Help me! Help me! Oh, dear Lord help me!” Mother reaches for her left knee and screams out, drawing the attention of everyone in the dining room. “Please shoot me!” Judy responds with, “Mother, we don’t have a gun.” I ask, “If your mother asked you to shoot her would you?” Evelyn’s response is, “Well, no!” So begins our Monday.

After consulting with the nurse we wheel Mother out of the dining room, give her a darvocet and take her back to her room. An aide very gently gets her back in bed and does everything she can to make her comfortable. As soon as Evelyn gets in bed she says she wants to get up again. We don’t even attempt to honor that request.

We try to soothe her, talking calmly and gently rubbing legs, knees, arm, back – wherever she says is hurting at the moment. The nurse and aid return to see how she’s doing, trying to come up with ideas of how to help. We hear everything from more pillows to Tiger Balm.

I get Mother to take three pretty good swallows of Boost but nothing solid from her lunch tray.

Judy Carmack, a long-time church friend known as Evelyn’s Florida Judy, comes to visit. She help’s rub Mother’s back and reposition her. The social worker, Mary, arrives with more paperwork to be signed and answers a number of our questions.

Kellie, the physical therapy director, visits at our request. She says Mother can use their wheelchair as long as she’s in this facility. If she transfers somewhere else Kellie will help us order the appropriate one through Medicare. Basically Kellie says Evelyn’s pain management needs improvement before there is much that they can do in therapy. As an aside, one of the therapists is Frank who Mother had in  2004 at Chatsworth. He was good, kind but firm, made her work hard and got her back much further than we though possible after the bleed out.

Complicating this issue is the fact that if she’s not receiving affective therapy her rehab stay won’t be covered by Medicare and will go to private pay ($6,900/month). My mind whirls.

Mary supplies basic information on applying for Medicaid.

With much soothing from Judy, Mother finally falls to sleep. We leave just after Judy Carmack for a McDonald’s restroom stop and to pick up mail at Morningstar. Delores (as excellent aide at Morningstar) tells us how one day Eveyln’s yelling, “Oh Lord please let me die, oh Lord let me die.” After a short pause Mother continues, “Well, maybe I’m not ready to die, but Lord take away my pain.”

I call brother Bill to give him an update.

Mother is still sleeping when we return. We continually note that when she’s sleeping there is no sign of pain. What does that mean?????? It all can’t be imagined.

Jerry Hopkins stops by. Mother wakes enough to tell him, “I love you.” Later Mary and Novelle Brown visit. As she sleeps Judy softly repeats that it’s okay to let go. She sleeps on as we steal away to take Janet Hickerson to dinner.

Janet and her keys are a whole other story. We don’t get back to the condo until almost 9:30 – a long day.

Tomorrow we meet with Dr. Harpalani at 5:30pm at the facility.

Since we went to church and afterward visited with so many people, we didn’t arrive at Courtyard Gardens until noon. Mother was in bed, nearly curled into a fetal position. She was confused and experiencing knee pain but not exhibiting any psychosis.

She’s worried about whether Daddy (he died 18 years ago) is working all day or will be home for lunch. As I try to get her to eat lunch she talks about needing to cook dinner. She’s also worried about being sick while we’re visiting and keeps saying she’s ready to go home.

I’m not very successful in getting any food in her today. A big bite of roll and a couple of pieces of potatoes was about the consumption. She did drink all of a small apple juice and most of a carton of mild. She seems very dehydrated each time we arrive. Her lips were very dry and chapped today and they were bothering her. Twice I applied some of Judy’s lip balm which made her more comfortable.

Today she only complained of leg pain – especially in the right knee. It was even very sensitive to the touch.

For years she’s resisted drinking from a straw, now it’s the only way for her to get more than the merest sip. She’s never like being fed, but she’s letting me fed her. I don’t believe she’s capable of using utensils on her own. I really wonder if malnutrition won’t be end up being the cause of death.

After feeding her we left to have some lunch ourselves. When we returned she was sound asleep, had absolutely no response to talking to her. We decided to make a WalMart (it’s very nearby) run to pick up needed household supplies. She was still asleep when we got back. We stayed another half hour and she barely stirred in her sleep, seemed to be in a comfortable position with no evidence of pain. I surely didn’t want to wake her if she could rest and not experience pain. The nursing staff was thankful for that decision.

We’ve now observed for three days, each very different in mood, pain, behavior, and mental abilities.

Another Personality

July 4, 2009

When we arrive about 10:45 Mother is in one of her psychotic modes – mad, ranting, not wanting to be touched, in pain, not at all aware of reality. We tried to sit out on the screened porch but thought we were disturbing too many innocent people. I asked a nurse if Mother could be given something for the pain. What they could give her was ativan for her anxiety.

It took four of us holding her down to give her a shot. They were unsuccessful trying to give it in the arm because she’s so bony.

We had a really bad hour and a half before she calmed a bit. It’s  unimaginable how difficult it is to witness such behavior from your mother who’s always been so concern about how people perceive her, someone who always wanted to be correct. I don’t know which is harder, witnessing the pain or the psychotic behavior. We try to talk calmly and draw her into reality.

Once she calmed I was able to feed her a bit of lunch: a few bites of baked beans, steamed hamburger, macaroni salad, a couple spoons of corn. She drank all of a small cranberry juice.

At any moment Mother will wince in pain, sometimes accompanied by a startling scream. Today she described pain in her right shoulder, right hip and both knees.

Three hours of being in this environment seemed like an eternity.

Turning 98

July 3, 2009

Mother turned 98 today. It was a rather low keyed event. Fortunately she was fairly alert and not in extreme pain. When we first arrived she knew us and throughout the day expressed her gratitude to have her girls with her. When asked what she wanted she said not to spend a dime she just wanted family with her.

Evelyn & Judy 98 Original Orientation Loyal Jerry Hopkins visited before lunch and brought a personalized birthday card. In mid-afternoon Dan and Judi Jenkins (Mother’s minister for more than 25 years) stopped to extend birthday wishes. Before they left we all joined hands and Dan said a prayer. Dan held one of Mother’s hands, I the other. In the midst of the prayer she seemed so at peace and her breathing became slow and deep. I thought, “Wouldn’t this be a wonderful way for her to die. Dan praying her out.”

It wasn’t to be. Afterwards, while talking to Dan I shared my thoughts. He said he noticed the change in breathing too. He encouraged us to talk to her about it being okay to let go . I felt the Jenkins ministered to Judy and me today as much as Evelyn.

More negative was the fact that there are many signs that Mother’s failed since we were here six weeks ago. She has a very difficult time getting something to her mouth, seems to have lost  any spatial concept. We believe her to be unable to use utensils. She shows very little interest in food and eating.

Only twice did she scream in pain – once with shoulder pain, once with the left hip.

I signed dozen of papers as part of the admission process. We talked with the director of nursing, Dr. Harpalani’s PA Jennifer, dining room supervisor, speech therapist, activities director and numerous aids.

Happy Birthday Mother!