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!

Rats!

A couple of weeks ago something ate a 2" hole in a papaya ripening in the dining room. Mother insisted it was the house gecko. A few days later something ate through a plastic bread bag and ate about a 1" hole in a loaf of Portuguese Sweet Bread. "Surely," said Mother, "a mouse would need a bigger hole than that! It must be the gecko." On Sunday morning she caught sight of Mr. Mystery, trying to escape out the front door. Mr. Mystery is not a gecko. He is a rat.

Off to Long's we went for a rat trap -- the traditional wooden platform with a metal spring. Mr. Rat turned his nose up at the potato chip on Sunday night. Last night he ate the papaya, sprung the trap, and left. This morning while vaccuuming I found rat droppings and chewed up carpet behind my father's chair. Back to Long's, this time for an environmentally correct sticky trap. Rat is supposed to get his feet stuck in the glue. Just what I need before breakfast. A live, unhappy rat that needs to find a new home outdoors. If that fails, we go for the big guns -- poison bait.

We had an appointment at my mother's preferred residential facility for next Monday. No can do. It's yard man day, and she works with him in the yard while he is here. Can't do the following Monday, Daddy has a doctor's appointment. And their part-time helper starts that day. She doesn't want to do it at all. Now she thinks maybe she wants something in town since their doctors are all in town. Never mind that their primary care physician says he has patients at Pohai Nani and would probably see them there. She says, "We shouldn't be do the assessment now, anyway. If we don't go for six months, everything will have changed." I opined that they should just do it and get it over with, they can always say "No, thank you." if they decide to do something else. She figuratively threw up her hands, and literally said, clearly exasperated, "Well, do what you want to do."

Today I am in disfavor. Breakfast was OK. She spent most of the morning at the ironing board. For lunch she mixed up some chicken and mayonnaise, but announced that she couldn't stand up any longer. If anyone wanted a sandwich they would have to make it themselves. The only thing on the dinner menu that I considered edible was the salad. I had been warned in advance about the beets, so bought myself some peas -- which she has served once in the last year. She put peppers on her's and Daddy's fish, but none on mine, thank goodness. Had to make up some tartar sauce -- the fish had been too long in the freezer. She is unhappy that we are pushing this residential care assessment . She is unhappy that Ian has ordered a new, fancy walker for our dad. She says, "I don't know why he needs a walker that he can't open and can't lift. How much is it going to cost?" Conveniently, I didn't order it. Even if I had, I would not have asked the cost. If it's a needed piece of durable medical equipment, I just buy and figure out later how to pay the bill. In this case, I think insurace pays the bill. She is unhappy that her hip hurts.

Ray adored my mother. But when I got in moods like this he used to say, "You're sounding just like your mother!" That was usually enough to get me headed in a more pleasant direction.

Look for the silver lining. Give thanks. Keep praying!!

Critical Mass

Whole Foods Markets have arrived in Hawaii. Today they opened their first store, in our neighborhood mall, replacing the locally-owned market that opened with the mall way back when I was in high school. Mother and I went to the opening. It was a zoo! There was barely room to move a cart without hitting someone. Lines at the checkout stands ran up the grocery aisles from the front of the store back to the meat counters along the back wall, making it nearly impossible to browse the shelves. Prices are high, even for Hawaii. Although some local farms are represented, most of the produce and fish comes from California. We shopped for 40 minutes, then waited 40 minutes in the check-out line.

I've been having second thoughts about leaving my dad home alone. Over the last week he's been doing some things that would benefit from monitoring. Like trying to make telephone calls. Like trying to find his car, which he variously says is on Kauai (some 90 miles from Oahu) or lost in an unspecified parking lot. Like the day we came home and found him putting on his shoes in preparation for running errands. Like trying to fix himself a meal, turning the stove on high and walking out. Like turning on a water faucet and leaving in running. Forever.

In her bitter moments Mother says, "He's the one who wants to stay here and take care of himself. Well, let him take care of himself."

Today when we came home from the market Daddy was sitting on the floor in the doorway to his bedroom. He did not have the strength to get himself up. He is large enough that I cannot lift him by myself, and he couldn't help me. "OK," says I. "It's time to call for help." He balked. "No, not yet." He ordered a straight chair. He asked for his cane, and for his walking poles. He thought about pulling himself up by the door frame. All good ideas, but no cigar. Not this time.
"Here are your choices," says I. "You sit here, or you let me call 911. The fire departments do this all the time. Fire assist, they call it, man down. It's part of their job." Ultimately, practicality won over pride. We called the fire department.

Afterward he commented on how good the firemen were. They treated him with respect. They checked to be sure there were no injuries that needed immediate attention, or signs of heart attack or stroke. They were gentle and caring. They did not drag him off to the hospital. It could have been worse. But we already have an appointment tomorrow with his primary care physician, so he is going to be re-checked. We are also going to talk about leaving him alone without supervision, in-home care vs. residential care, the level of residential care we should be considering, about adding a geriatric specialist to his roster of doctors, and possible medications to extend his lucid moments.

Yes, we have reached critical mass.

Look for the positives. He can afford to pay for care in a skilled nursing facility -- at least for several years. Even without long term care insurance. He may not like his choices, but he showed today that when the facts are laid out before him he can accept the inevitable. Give thanks. Keep praying ......