Turning Points

I'm still running on adrenalin. After all, it's just after 5 p.m. and I've had less than 2 hours sleep in 36 hours. Why, you ask? Fall victims, especially those not seriously hurt, even those with dementia, do not have a high priority in emergency rooms.

My dad fell again last night. It must have been about 7:30 p.m.; I remember looking at the clock at 8:00, and the fire department first responders had already arrived. This time he hit the back of his head on the edge of a bookcase, and scraped the skin off two spots on either side of his elbow. It took three brawny fire fighters to get him from his bedroom to the car -- probably 40' total distance. Another team of helpful young men at the ER/Ambulance loading dock got him out of the car and into a wheelchair. I don't know who got him from the wheelchair into the ER gurney. Took Mother home just after 10 (it was going to be 2 hours before the CT scans would be read), and was back in the ER by 11:30. The ER doc (who looked like a teen-ager) called his own doctor at midnight, who asked that a Hospitaler (a doctor who treats primarily inpatients) admit him. It was 4 a.m. before we climbed to the top of the Hospitaler's priority list. He saw no clearly defined problems, although there was enough of a suggestion of pending pneumonia to justify admitting him. That and the fact that it was all two strong nurses could do to keep him standing upright long enough to take a blood pressure read. No way was I going to get him back home by myself. There was no evidence of major stroke, no concussion, no skull fracture. Just the goose-egg where his head hit the edge of the bookcase.

The admitting doctor ordered another chest x-ray later in the day, a physical therapist to work on mobility and check his ability to swallow, and evaluation by a geriatrician. We'd been unable to get an appointment with a geriatrician before April 2009, so this order was an welcome relief. We agreed that he should be kept comfortalble, but that no heroic measures should be taken to prolong his life. I left at 4:30; Daddy did not get to his room until about 6 a.m.

I learned about something called 'sundowning'. After dark, especially in unfamiliar settings, dementia patients tend to get more agitated than usual. The IV lines and monitors, all with associated cords and cables, often trigger agitation and aggressive behavior. So I became the bad guy, because I was the one who agreed to his admission as an in-patient.

Ian did the hospital visit thing today, arriving on the heels of the geriatrician. Did Daddy remember what happened? Of course. He was thrown out of his airplane seat. Did he remember being in the ER? ER, he wasn't in the ER. He was on an airplane, and didn't get home until 6 a.m. Who was that man standing over there (pointing to my brother)? I don't know, but he's been around for awhile. What year is it? 1986. Do you know where you are? Blank stare.

Our father is in an alarmed bed to warn the nurses when he tries to get up. When seated in a chair, he is connected to the chair with a mesh vest-like device to "remind" him that he cannot leave the chair. Today he had to be spoon fed before he would/could eat. When alone in the room he wears large mittens that look like boxing gloves to keep him from pulling out lines and monitors. He got pretty good at that trick in the ER.

The expectation is that he will remain at Queens until at least Monday. I think Mother is relieved. We meet with the social worker on Friday morning to discuss options.

Give thanks for the geriatrician. Look for those silver linings. Keep praying. ...

Emerging from a Bad Spell

Going it alone. Not going well. Some of you manage life alone very successfully. You thrive. I wish I could. I recently read a letter written to my mother by her aunt mentioning my grandmother’s loneliness as a widow. Neither of them really understood. One of their mutual friends, a widow, had said, “I just need something alive in the house.” I find it is more than that. A pet qualifies as something alive; a pet you enjoy does make a difference. The radio and TV provide another human voice. I need something alive that can carry on an intelligent conversation, share things we both enjoy. I would appreciate someone who can walk all the way to the back of Home Depot without wearing out. I’m looking for someone who would enjoy a day in Yosemite or at Cherry Lake or exploring Hawaii Volcanoes National Park. Maybe even visit New Zealand and Scotland. Someone who can share the driving.

Maybe this most recent slump (which I am finally beginning to climb out of) has to do with the futility of care giving in my parents’ home. Very few people who have lived independently into their 90’s are willing to take direction from a child who has been only an occasional visitor in their home for 45 years. We haven’t “grown up” together. We haven’t shared an adult life or adult interests. They don’t know my interests, skills and competencies. I am just learning about their weaknesses. Our tastes are different. When did my parents start enjoying beets or split pea soup? When did they stop eating thick-crusted, hearty breads, or rocky road ice cream?

Then there’s the dignity issue. My father came to the lunch table today in obviously wet clothes. After lunch I stripped and re-made his bed and emptied his hamper, laid out a clean change of clothes for him, and told him I needed everything on his body for the washing machine before I could do the wash. He was insulted.
On what do you base your judgment?
Observation.
Maybe I should just move.
Where will you go?
Silence.

He called Mother into his bedroom where they could talk privately. I heard her say, “You are wearing them and you are still wet?” Then realization struck. He was wearing Depends. He does not understand that they only absorb a finite amount of fluid before leaking. He does not understand that it is not wasteful to change them several times a day. He did not want to hear that if he wears wet clothing all the time, his skin will break down and he will get sores – diaper rash with a vengeance.

Before he could even get them on his body, the fresh clothes were wet.

It’s hard to tell whether my dad’s willfulness is anger and vengeance, or if his dementia is cycling in again. Yesterday Mother told him his car is no longer insured and he cannot renew his driver’s license. Yesterday he was angry because both Mother and I told him to wipe up the bathroom floor after he peed on it. Today I think I am seeing dementia at work. Which means we are heading into another downhill slide.

Give thanks for the good times. Keep praying …

Getting Even

The question is, who needs care? What kind of care? Who decides what care to give?

Mark, the caregiver from Options for Elders, was supposed to come on Wednesday last week. Through a series of crossed wires – and the absence of an answering machine on my parents’ telephone – we didn’t get the message that he had a Wednesday conflict and would not be here until Friday. That set a sour tone for my mother. On Friday Mark arrived exactly on time – and right on the heels of Glenn, who mows the lawns. It’s a good thing Glenn works unsupervised!

Afterward Mother commented, “I agreed to this because I thought he was going to help me. Apparently he thinks he is supposed to help your father. Seems to me your father can get along just fine. He can get outside, sit on the lanai, look at the yard. He doesn’t need someone to take him out. I need help with things like heavy cleaning. I asked him to clean the counters in the kitchen. He wiped them down, but there are stained spots that need to be scrubbed and the stains are still there.” But he also scrubbed down the woodwork and diagnosed the problem with the overhead kitchen light.

Meanwhile, Daddy still needs to feel useful, even if he really is creating more work for someone else in the process. He is entitled to some quality of life. If I think about it, I can appreciate the thought process going on. He’s spent most of the last 70 years – probably most of the last 94 year – considering only his pleasures, not the consequences of his decisions. While he’s been enjoying life, she has been hurting. Are we playing “get evensies”?

We are seeing obvious signs that Mother is slipping, too. There was the charge on her credit card – the one for which she remembered writing the order, but not putting it in the mail. At dinner last night she asked about her “meat pounder” – one of those hammer-looking devices used to tenderize meat. Said she looked everywhere for it, but it was not to be found. I found it right where it was supposed to be. Yes, it was buried under a spatula, but still in the box. Took the box out to show her. She was chagrinned. He quietly said, “Thank you.”

What about me? I am getting restless. I think I need to find a friend or two, someone to have coffee or lunch with occasionally, someone who is interested in craft fairs or special exhibitions or just exploring, or someone who would enjoy an occasion afternoon movie. Now what?

Owning vs. Renting

We have spent the last week looking at Senior Communities.

We went back to Pohai Nani, where my dad passed the "assisted living" test. He can live in the regular apartments with help -- as much or as little as he needs, with the appropriate associated fees. Pohai Nani is operated by a unit of the Lutheran Church specializing in services to seniors, both in transitional care and independent living settings. Decisions on services are made by local management based on what corporate experience suggests is popular or desirable for resident care. For example, they are transitioning all their tub/shower units to step-in showers (i.e., small curb to contain water). Roll-in showers represent a higher level of care and are available in both the small group cottages and skilled nursing facilities. Pohai Nani is in a suburban community on the windward side of Oahu; all apartments have lanai and magnificent views of the mountains.

One Kalakaua is much newer than Pohai Nani, and has a very urban apartment complex feel. Units there are privately owned, and compactly designed. Each has a full kitchen and washer/dryer. The master bedrooms are spacious; where there is a second bedroom, it is tiny. All the common rooms are on two floors -- there are no common areas on the residential floors. With your apartment comes covered, secure parking for one car. There is no community bus; the City bus and taxis are readily available. Your monthly service fee includes only 1 meal in the dining room daily, and the lunch and dinner menus are identical. Many residents do not use even their 30-day allotment of dining room meals preferring to eat in their apartments or in another restaurant in town. Everyone wears an emergency call bracelet or necklace, and there is 24-hour coverage at the front desk. You cannot sneak out the front door without being seen! Someone set on escaping might be able to get out through the garage, but there's a lot of walking involved in that exercise. An interesting concept is that the hallway door to each apartment is alarmed nightly from the outside by the facility security staff. If the door is not opened to break the alarm circuit in the morning, someone will call and ask you to open your front door. If they do not get an answer by telephone, they will come into the apartment to check on your status. The down side is that since the units are privately owned, all decisions for services (except on the medical floor) are made by the Homeowner's Association members -- i.e. the residents. If the majority of those interested in the decision-making process are from the young-and-active crowd (anyone can live there as long as the primary resident is at least 55), policy will reflect their preferences. They do have active residents in their 90's, and are proud of them. There are more off-premises activities here, reflecting both the more active status of the average resident and the location right in town.

So here's the Question of the Day -- at 95, is one better off to (1) stretch really hard, purchase a unit, pay a smaller monthly service fee, and have a piece of real, inheritable property or (2) make no initial investment, rent for a much larger monthly fee -- which is affordable now, but may be more difficult for my mother alone -- and have no investment at the other end. Your perspectives are appreciated.

Today's trivia: Barach Obama spent most of his growing up years living with his grandparents only a block away from One Kalakaua in another apartment building where his grandmother still lives.

I learned a new Hawaiian word this week: mokulele. Moku is a boat. Lele is jump, or jumping. Mokulele is airport. Thus an airplane is literally a jumping boat! Interesting concept. I wonder if other cultures describe them similarly?

Special Days

Perhaps it was a blessing that I did not pay attention to today's date until late this evening. Only then did I realize that this was Ray's and my 31st wedding anniversary.

No, going on alone is no fun. I still get drippy-eyed whenever I am reminded of the reality of his absence. I miss his level-headed practicality while at the same time being an incurable dreamer. Now there's an impossible combination! He used to tell me, "If common sense really were, more people would have it." He kept me grounded and real, not caught up in the abstractness of theory. He focused on the positive, convinced that anything is possible if you want it badly enough. I miss the companionable times, of walking together hand in hand almost anywhere, of sharing the beauty of the world around us. He even found beauty in the desert.

I miss the conversations, the teasing, his ability to find humor in everything -- even our own weaknesses. It wasn't laughing at, it was laughing with. We cannot take ourselves too seriously, he would remind me. He was intensely spiritual, but not enamored of institutional religion. He attended church regularly because it was important to me. Through the church he learned to accept unconditional love, to love unconditionally, and to forgive both himself and those who hurt him. Yet he was not tied to a particular church.

I miss dumb things -- my right-handedness to his left-handedness. Great for doing a 4-handed job in a tight space; we didn't get in each others way. I miss his love for long-distance driving, so that we could visit people and places more than 50 miles from Groveland. I miss his ability to strike up a conversation with anyone, to sell any idea that caught his fancy. I wonder if anyone in Groveland remembers that the two most popular exhibits in our little museum are there because Ray Stevens saw Stu Heller's working models of sawmills at a craft fair, then dragged me over to talk to Stu because "those would be really great in your museum". Ray was right.

I miss his spontaneity. I miss his eclectic taste in music -- although some of it now resides on my iPod. I miss his artistic eye, and his suggestions for when and where to haul out the camera and take pictures. I miss the days when he could turn handsprings and walk backwards on his hands. I miss the walks and easy hikes, fishing trips and fresh trout.

I remember the holidays when he used to go out and bring home for dinner the Highway Patrolman or Sheriff's deputy on duty -- on condition that THEY carved the holiday turkey! I don't know now many turkeys one uniformed officer or another carved in my tiny kitchen because Ray hated the task. I miss Halloween in Groveland -- first the kid parties that we (was that a Boy Scouting service project?) did at the community hall and then at the elementary school because it really isn't safe for kids to trick-or-treat in the country the way they do in the cities. That eventually grew into the trick-or-treat trek from merchant to merchant in town, with hot dogs and cocoa around a bonfire at the park. I miss the elegant pumpkins he used to carve, not to mention the holiday yard decorations he created for every season.

I told a special friend today, "Where ever you are, he is always with you." I need to remember that myself. But on this special day, the day that was ours, it's hard to be alone.

I give thanks for the time we had and the love we shared. I keep praying....

Make Room for Quilts

Here's my in-process version of the Mystery Quilt for our Guild in Groveland. A Mystery Quilt builds from directions coming one step at a time. You never know where you are going until you get there -- thus the mystery! Wish me luck!!

I found myself a space to cut my quilts. It's not traditional, but it works. Unable to make a reasonable workspace indoors, I appropriated one of two of my father's workbenches on the lanai.

The pink and black is fabric laid out for cutting or recently cut. The green is a plastic tablecloth, courtesy of Wal-Mart. Under it is a blue tarp, designed to block any grease or other really unacceptable stuff. Under the table is a funky, painted wooden box, my father's trunk packed into his car when he came to Hawaii in 1939. My grandfather, a shipwright, may have made it for him. The white blob on the right of the photo is a towel, draped on a stationary bicycle to keep it out of the dirt until it is again called into use as an ironing board cover. The iron, perced on the stool so it won't melt any of the plastic, plugs into an outdoor extension cord running across the width of the lanai to to the nearest outlet. If I need a design wall, I'll rig something using the clothesline. Now, where can I put the sewing machine? Workbench is at a good standing height, but too high for sitting.

Meanwhile, it was a difficult day for my dad. When left alone at the breakfast table, he was carefully examining my mother's prescription meds. Fortunately, he doesn't have the hand dexterity to open those bottles. But the temptation shouldn't be there. He didn't want to dress in more than underwear. When I asked him about putting on trousers, he said he was dressed. He is sleeping far too much -- at least 20 hours each day. He has not been talking to unseen persons. He's visibly loosing weight and rejecting many foods. He is not taking direction well, or easily distracted. I don't know whether it is harder to loose your body or loose your mind. It's certainly easier for a care-giver to deal with a rational patient with a deteriorating body than a physically sound patient who is irrational.

Be positive. Look for the good. Keep praying!

Birds

I've been watching the birds in the bird bath -- like this Red Vented Bulbul, who is a relatively new immigrant to Hawaii. I love how they come in and splash, throwing water all over everywhere. The Bulbuls and the Mynahs seems to have the most fun and are always the first to arrive, but even the little birds enjoy bathing. Yesterday I got out my garage sale tripod and the camera, and waited. Not every patiently. And managed to snap this image before Mr. Bulbul got himself out of the image frame! All that "snow" is water that he sprayed as he was leaving for a nearby tree. I love the way the sun shines through his wings in flight. Yes, that multi-hued blob in the upper left corner is Mr. Bulbul.

If you've lived with a dementia patient, have you noticed a behavior start, begin to do something wrong, then stop as if recognizing there is a problem, taking an extended period to think what needs to be done, and then acting more or less appropriately? That's what I've been noticing my dad doing over the last two or three days.

So --- look for that silver lining. Give thanks ... and keep praying!