So Long – or, Goodbye?

August 29, 2009

As we draw this visit to a close and leave Mother for the last time I bite my lower lip and take a deep steadying breath before planting a final kiss on her forehead, hoping my moist eyes don’t overflow at this moment. How many times have we done this over the years. Uttering, “See you soon, love you,” while wondering will we ever see her alive again.

I remember when my father died more than 18 years ago, Mother repeated over and over, “I don’t want to live even two years without Bill.” Totally blind and turning 80 with several minor health conditions we would never have imaged she’d still be with us in 2009. After a couple of months adjustment period Mother decided to stay in her Florida condo alone. With a fantastic support system she managed to live independently until 2003 when she agreed to move to an assisted living facility. The determining factor being the location next to her church, she’d be able to attend more services and activities.

A year later we started the downward spiral of health emergencies – and, recoveries. When my sister Judy and I board our flight from Denver in May 2003 we’ve been prepared that she may not live until we get there.  She’s had a bleed out, even the doctor’s can’t explain how she could survive with her hemoglobin so low. After ten intensive days of tests, cause was still unknown but she was ready for rehab and the future. Judy and I made repeated trips to Florida for support along the way.

The following year her blood was septic, another extended hospitalization, another rehab facility. One year later there was the Friday afternoon call from her doctor, “I’ve sent Mom over to the hospital to prep for surgery.” Our first question, “Can she survive surgery at her age (94 at the time)?” His chilling reply, “She won’t survive if we don’t operate immediately.” The incarcerated hernia was repaired and Mother was back at assisted living within the week. Without a rehab stopover.

Three weeks later the facility called, “Evelyn’s taken a fall, we’ve sent her to the hospital for x-rays.” Within hours she was told there was no facture and returned to the assisted living. When she didn’t bounce back the following week the doctor ordered a CAT scan. There was a hip fracture, surgery required and pins placed exactly four weeks after the hernia surgery. Rehab was essential as well as the need to find a new living facility that could offer more care without putting her in a nursing home.

We found a small, home-environment ALF with a caring staff. For three years we called them our angels for the care and concern the owner and aides provided. Along the way there were falls, infections plus general aging and deteriorating physical ability. The doctor diagnosed age-related dementia. Twice I received phone calls of, “Nancy, I think she’s gone, they’re taking her to the hospital but she wasn’t breathing.” Once she sat straight up in the ambulance and wanted to know, “Where are you taking me?”

This spring excruciating pain sent Mother to the hospital with a DVT (deep vein thrombosis) in her left leg. With her medical history, condition and living arrangement the doctor didn’t believe blood thinning meds were the safest treatment. So, she’s once again wheeled into surgery to have a filter placed in the vena cava. If the clot breaks loose the filter will prevent it from traveling to heart. lungs or brain. By June the pain, psychosis caused by both a non-responsive UTI (urinary tract infection) and the pain requires another hospitalization. Once again it’s apparent we need to move to a higher lever of care with 24-hour nursing.

Mother’s been probed, prodded, scanned and screened. I remember the chemical stress test a few years ago; as the chemicals coursed through her system she asked the doctor, “Have you ever killed anyone with this test.”

We’ve learned to navigate the elder care network of Palm Beach County. Frequent flier miles add up as Judy and I return for innumerable visits to doctor offices, labs, imagining facilities, hospitals, ALFs, rehab centers, nursing homes and hospices. Reasonable proficiency has been achieved for dealing with insurance companies, physician’s receptionists, agencies, administrators and bookkeepers.

Each time we visit we see a decline in both physical and mental health. She no longer can assist with her own transfers, or feed herself; she’s confused as to how many daughters she has. Yet, she isn’t unhappy or aware of how limited her life has become. When we told her we were going to a care management meeting a few days ago she curtly asked, “What are you going to do put me in a nursing home.” Judy and I looked questioning at each other, where does she think she is? She’s delighted with visitors, enjoys singing Amazing Grace with the housekeeper and adores a backrub or hair styling. Last week she told us, “We’re the strong ones.” Who can argue, she is still here.

I’m conflicted as to what I truly hope and pray for. How can one want her condition to further deteriorate? What is the quality of her life? Wouldn’t it be best if she could peacefully go to a final sleep without suffering or pain? Yet, I find it impossible to believe this will be my last visit with my living, breathing Mother. Are we ever ready to say that final goodbye? I’m a mere mortal, this is in God’s hands. Thy will be done.

Evelyn had a busy day, by 7pm she was too tired to take her medications. Reasonably alert in the morning, she’s up in her chair and anticipating getting her hair washed and trimmed when we arrive.

Lunch was a resounding failure. Mother thought the lima beans sounded good but after chewing them she would spit them out. Even the chocolate pudding didn’t get swallowed. I’m calling our meal routine chew and spew. I did get her to drink 4oz. of grape juice and about 2oz. of apple juice.

Sitting in her chair, Mother likes to have her head thrown back with chin up – the worst position for swallowing without choking. Although she doesn’t like a pillow behind her head the staff uses one when she’s eating. She seems to have congestion today, coughing quite a bit and bringing up phlegm.

Later, when the doctor visits, he hears some wheezing. He’ll order a chest x-ray for tomorrow. I’ve been concerned about whether Mother is getting her nebulizer treatments. Two a day are ordered, 9am and 5pm. In the last week she’s turned down 3 out of 7 in the am and all of the evening treatments. Doctor is going to change the order to three a day with the hope that she’ll agree to at least one of the three.

Jerry Hopkins stopped for a visit at the same time Mother was being taken down to the hairdresser line. He stayed a short amount of time, said a prayer and chatted with us in the lobby for a while.

When we got back from lunch Mother was in the hall with her hair washed and trimmed. She was fairly sleepy and her mind was back a few decades. At one point she said, “I have two cataracts.” Judy asked, “Are you going to have surgery?” “I don’t know when,” was Mother’s reply. Yes, she has cataracts but she was blind for a long time before they appeared. She will not be having cataract surgery.

Dr. Harpalani arrives at 5:45 and spends about 45minutes with us. He is somewhat concerned about whether the care will remain the same if Mother is on Medicaid but we are really at the point of that needing to be the choice. He makes a couple of adjustments to her medications. Agrees to send the appeal letter tomorrow to Medco about the Lidoderm patches. I’m to call his office in the morning and leave a reminder and come by at the end of the day and pick up a copy.

When we leave just before 7pm I feel totally spent. Calls to brother Bill and from Bob and Steven take up much of the evening. A long day.  This was my birthday, one thing I’m sure of is that I aged in the last 24 hours.

While tossing uncomfortably in bed this afternoon Mother pulled herself to a sitting position and announced, “I think I’ll just get up and take a walk.” This would have been a miracle equal to the loaves and the fishes. She hasn’t taken a walk on her own for three years nor stood on her own for over a year. Needless to say there was no strolling down the hall.

Mother’s mood was much better today along with greater awareness. To break the usual pattern she was better in the afternoon than the morning. No napping or drowsiness, instead, she grew more feisty and witty.

Patting an arm Evelyn asked, “Who is this?” Judy teasingly said, “It’s Judy, can’t you see my pretty face?” Mother responded, “You mean your ugly mug.” We laughed so hard it’s amazing there wasn’t a puddle under each of us. This was something “our” Mother would never have said, we couldn’t believe what we’d just heard. The sly smile and twinkle in Mother’s eyes were priceless. We think she must have learned this from roommate Rosie.

When Mother wanted to get up and go to the bathroom I told her that she wasn’t strong enough for us to be able to help her. She grabbed the bed rail, pulled herself up and said, “Oh.” She seemed to have lots to prove this afternoon.

I got her to eat a half-dozen bites of a chicken sandwich at lunch plus several sips of cranberry juice and milk. When it was nearing time for dinner trays to be delivered I decided I would rather face I-95 rush hour traffic than another feeding fiasco. Isn’t that what we’re paying Courtyard Gardens for?

The craziest part of today was brought to us not by Mother but by Medco, her drug insurance company. We’re still trying to get coverage for the pain patches. After both Dr. Harpalani and I talked to representatives at Medco I was finally told that since this Rx was denied in June the case can’t be reopened for six months unless the doctor writes an appeals letter. Why someone couldn’t have told us that a week ago I’m not sure. The hoop jumping wears me out.

Who Is This Person?

August 23, 2009

Someone we’ve never met before possessed Evelyn’s earthly body today. When we arrived after church she was in another place and another time. She told us we were going to the park for a picnic, after we ate there would be a singing contest, she was trying to decide what song she was going to sing because she wanted to win. She finally chose a church song because, “Everyone knows that one.”

Mother determined that we needed to take sandwiches and homemade lemonade. Trying to play along Judy asked her, “How much sugar should I use in the lemonade?” Mother said, “I get it the way I like it, everyone else should take a taste and see if they want to drink it.” Then we asked what kind of sandwiches. We had some eye rolling with her response, “I’m going to take a bite out of each one and decide which one I like.”

We want to name this new Evelyn character but fail to think of a clever, descriptive one. Take pity, this was the best part of the day’s visit.

When lunch arrived all went downhill. Roast pork, cornbread dressing, mixed vegetables, layer cake and milk looked like it had possibility. Before we ever started Mother was saying, “I’ve had enough.” I put some pork into a sandwich, Mother toke one bite, chewed for a while and started spitting. Every bite in came out, spit into her hand, on the floor, all over me. My tolerance quickly wore thin. Admitted defeat for this meal I quit trying and started washing the floor and spots out of my pants.

Vivette, a kind and patient nurse, came in with pain pills and a Boost. Evelyn became extremely aggravated, yelling at the nurse and me. When things go wrong there is no level of reasoning. Vivette says this is the third Boost Mother has had today. It’s obvious they use the Boost to entice her to take her medicines.

Vivette also said they had not received more Lidocaine patches from the pharmacy. I’ll have to address that cause again tomorrow.

We escaped for an hour, enjoying lunch at Schooner’s which would be relaxing if we weren’t so overwhelmed by Mother issues. Not giving up we go back to Courtyard Gardens for more. Big mistake!

We expected Mother to be in bed taking a nap but the nurse said she had declined. She’s not any more alert than when we left. Roommate Rosie is in her bed but not sleeping. In her high squeaky voice that sounds like she’s saturated with helium Rosie is in a talkative mood. Her conversation makes sense only to Rosie but she, “Loves us, I’m gorgeous, and God bless everybody.” She can go on and on – seeing beautiful sights on the ceiling and interspersing the conversation with musical accompaniments. We try to walk a fine line between being polite and ignoring the chatter, responding when necessary without encouraging an extended exchange.

It was now time for us to meet Anne, a self-propelled wheelchair resident. She invites us to home for dinner, telling us her mother is a very good cook. Anne makes no more sense than Evelyn or Rosie. We try to persuade Anne to go back to her room with no success. She’s determined she’s “going home” as she eyes an emergency exit door. Judy tells her not to open that door but that was no more effective than anything else we’ve done today. Soon the shrill, ear-piercing alarm creates cringes up and down the hall until a staff member is found who knows how to turn off the alert.

We’ve noticed that on Sundays some of the residents put on their finery. One gentleman always sports a tie and ladies like to don a proper “church” hat.

When we were growing up one of Mother’s favorite threats was, “You’re going to drive me crazy and send me to the insane asylum,” otherwise known as Kankakee (an Illinois town with a large state mental hospital). This afternoon Judy decided we had all arrived in Kankakee.

Away – Far, Far Away

August 22, 2009

Oh, where, oh, where has our mother gone? Away – far, far away. Although we arrived about the same time we did yesterday, today we found a totally different situation. An aide was combing Mother’s hair, after getting her dressed in a pretty pink dress (much too large on her shrinking frame). Mother was up in a chair looking good but wasn’t aware of who we were or anything that was going on around her. By the time the aide had the bed made up with all clean linens Evelyn was sleeping.

Just before noon the nurse brought in a pain patch and placed it on the left knee. I hope this is a sign that our pharmacy/insurance/doctor authorization issues are resolved. The nurse reports that the night shift said Mother refused to take her medicines; we’re not sure whether this was last night or early this morning.

We spent two hours trying to rouse Mother with little success. When she did respond her voice was weak and speech slurred. She’s unable to comprehend or follow the simplest of instructions. If this had been our first day we would have said she had greatly declined since July.  She slept with her head thrown back, mouth open wider than we could have imagined, her breathing was very rough – just listening made my throat sore and in need of a drink. When she would open her eyes we offered sips of water, which were seldom accepted and often causing coughing and choking on even a small swallow.

Irreverently Judy and I couldn’t help but laugh over the possibilities of all manner of animal kingdom species flying into the gaping cavern.

When lunch arrived we woke her enough to get a half-dozen bites eaten. The food looks good and well prepared, the menus include dishes Mother would have enjoyed a year ago. Even when something sounds good and she’s willing to take a taste she really isn’t interested. With each bite today she would say, “Now that’s enough.”

She quickly lapses back into sleep mode. Judy treats me to a birthday present of an afternoon movie – Julie and Julia. When we return to Courtyard Gardens Mother is in bed, curled into the fetal position, sound asleep. She doesn’t respond to touch and just barely to our voices. We see little reason for a lengthy visit and try to communicate that we will see her tomorrow after church. Our “work” day complete and we head to Grumpy Grouper for dinner.

On the home front Bob reports he isn’t feeling well with stomach issues. He even considered going to the emergency room last night. I’m really tired of problems on two fronts at the same time. It’s hard to multi-task between Florida and Colorado.

I need to remember our motto, “We can’t fix everything – and, some days we can’t fix anything.” Guess I’ll just say a prayer.

“I’m Not Old Enough”

August 21, 2009

So declared our 98-year-old mother this morning. Judy and I are still puzzling, “Old enough” for what? Perhaps, dying?

When we arrived at the nursing home this morning she was sitting up in her reclining chair, bright eyed and bushy tailed. Her private duty aide, Judith, was talking to her while patting her shoulder and fixing her hair. Mother loves the pampering. She was more alert than we thought possible and in great good cheer. While I chatted with Judith about Mother’s behavior and needs Mother and Judy provided a musical review of old favorite songs. One of the songs Mother likes to sing is Billy Boy – always followed with the math exercise of adding up, “Twice six, twice seven, twice twenty and eleven.”

This always brings us around to the subject of age – almost a daily occurrence. When we tell Mother how old her children are she bites her lips and shakes her head in disbelieve. We asked her, “How old do you feel today?” We shake our heads in disbelieve when she replies, “Twenty one.”

By noon the alertness and vitality are spent. She can’t stay awake. We’re fearful she won’t eat lunch again today. Judy arouses her enough that she eats a sandwich I make with a roll and half of a salmon patty followed by a few bites of egg noodles, two slices of cantaloupe and milk. When she thinks she can eat more salmon I make another small sandwich with bread and salmon patty – every bite goes down. By this time she’s complaining of her bottom being sore from sitting too long and becomes very restless. Judy diverts her attention with a back rub until an aide comes to get her into bed.

When we return from our afternoon break Mother is awake but drowsy and not very connected to reality. It’s hard to grasp how one moment she’s pretty together and the next her mind seems totally vacant. I feel like we’re constantly on a seesaw.

Evelyn Status Update

August 20, 2009

 

Before we leave the condo to make our initial visit to Mother I spend about 45 minutes talking to the pharmacy, Medco (Evelyn’s drug insurance company) and Dr. Harpalani’s office about the authorization for the Lidocaine patches for the leg pain. Of course, no one is responsible and it’s the other guy’s problem. Fortunately I had helpful ladies at both the pharmacy and Medco. For the first time I had someone rather rude and resistant at the doctor’s office. You shouldn’t be surprised that before the conversation was over she had spoken with the doctor and the forms will be taken care of today.

When we arrive at Courtyard Gardens Mother is in a recliner chair out in the hall. She looks clean and well cared for, her clothes are clean, and the bed is freshly made. She’s in a different room on another wing because “High B” is undergoing major remodeling. Work on the facility is evident everywhere.

Mother is thrilled to see us and chats coherently about family, visitors, etc. We’re thrilled and amazed how well she’s doing – there’s more improvement  since we left July14th than we ever thought possible.

Evelyn enjoys hearing about Bill and Judy’s wedding. She’s so alert we decide to call Bill and let her try to talk to him. He isn’t home but Mother talks to Judy, welcomes her to the family and asks Evelyn’s favorite question, “When are you going to come see me?”

We’re also impressed with the staff interaction with Mother, even the housekeeper checks in when she passes the door and tells us she sings Amazing Grace with Mother. Most of the staff recognizes us and greets us warmly.

All is well until lunch arrives and I try to get Mother to eat. She immediately becomes agitated and resistant to eating anything. Normally a ham sandwich would have been well received. Not today, her total lunch consists of no more than six bites. Even milk and juice hold little appeal.

When we return from our late lunch (see Lazy Loggerhead Cafe at www.wheretogotraelusa.com) Mother is in bed, very sleepy and not very interested in visiting. Bill calls when he gets home but Mother is now in no shape to talk intelligently. Our time with her this morning was much better. A good start to our visit.

Deja Vu

August 19, 2009

Been here, done this before – and, will probably do it again.

Flew from Denver to Ft. Lauderdale via Frontier Airlines – terribly happy there will be a Frontier Airlines in the future. Flight was uneventful, the pilot skillfully wove a course around giant clouds and threatening weather systems.

Typical of baggage claim in FLL our luggage arrives at a different carousel than the one we’ve been directed too. The terminal is extremely quiet.

Arriving at the Avis Preferred Members board we fail to find a Yackel on the list. While waiting for assistance I receive a call from Mother’s drug company. They are refusing to provide the pain patches that have proven affective. I’m not even out of the airport and here’s a new issue to handle.

The Avis representative takes pity on us and gives us a choice of upgrades. A Prisus (so successful on the last rental) isn’t available so I select an SUV – a Kia Sorento. I’m sure I’ll like it better than the typical Chevrolet rental. He sends us off with multiple blessings for both of us and Mother.

Our treat of the day was a stop at Steak ‘n Shake. A cheery waitress welcomed us with an door open and promptly took our order. We don’t even need to look at the menu since we each have favorites. A cup of chili topped with cheese and onion, double cheeseburger and perfect fries served piping hot satisfies a day-long hunger.

The evening is spent opening up the condo, unpacking, grocery shopping – nesting for the next ten days.

Tomorrow will be all things Mother.