How's Sue?

Some have asked how I’m holding up through this “caretaking adventure.” If you’ve read this blog from the beginning, you may recall that I was determined to approach this journey creatively, in the sense that I wanted to maintain good mental, emotional, and physical health while making a meaningful contribution to my family’s quality of life.
Here’s my report card so far:

Physical – A-
My strategy has included using the local Curves clubs for workouts three days/week, and walking around the community on alternate days. That was fairly easy to do until this week after Mom went into the hospital. But next week I should be back on schedule. I wear a pedometer consistently, take the stairs instead of the elevator, and park far away (which isn’t hard at the hospital). I average about 7500 steps per day.

Another part of my strategy was to give up “bad habits” for Lent (and beyond). In the past, when I’d come here for a week to visit, I’d fall into the habits of drinking wine and eating dessert every night, stopping at coffee shops and buying giant muffins, just so I could use the free WIFI (not really free if I spend $5 and 500 calories, now is it?), and sneaking cookies from Mom’s cupboard. These bad habits could easily add an extra five pounds in just a week. I couldn’t afford to let that happen. So I’ve determinedly avoided any indulgence that could easily become a habit. Yes, I’ve had a glass of wine, but only on what I could justify as a “special occasion” rather than an ordinary evening.

As a result, I’ve lost 3.5 pounds and a couple of inches this month. Yippee!

Mental – B
My strategy included bringing lots of reading material for all those times spent waiting – in doctors’ offices, hospitals, or for Dad to brush his dentures. I must admit that I have not even opened the box of books, which is still in the trunk of my car. I tried to start a novel but it hasn’t hooked me. I have made a dent in my collection of art and business magazines.

I had also thought it would be fun for all of us if I read books to Mom and Dad in the evening before bedtime. Nice idea, but we are all so exhausted by bedtime that we’d all be asleep before the end of the first paragraph.

I have a client for whom I’ve been doing some writing for the past few weeks. This has been excellent mental stimulation and a welcome diversion. In addition, it helps keep me grounded in the reality of my other life.

I can’t measure my mental state but overall, I think I’m doing OK. And this writing has been a therapeutic mental exercise, too.

Emotional – B-
The key strategy for emotional health has been to find something to laugh about every day. This has worked most days, though yesterday was a struggle. As I watched Mom try to clear her lungs, hooked up to tubes and monitors, it was easy to slip into fear and sadness. Inside I was falling apart and the lump in my throat was almost unbearable. But I held it together on the outside for Mom and Dad’s sake.

Once again, Dad unknowingly supplied my dose of humor at the end of the day. I let him take me out to dinner at a little diner near their apartment. Good thing it’s an all-night diner because that’s about how long it took, and not because of any inefficiency on the part of the wait staff. Dad perused the rather extensive menu trying to decide what he wanted while the very kind waitress stopped by at least a half dozen times to see if we had decided. She and I rolled our eyes at each other and smiled as Dad continued to look for the perfect meal. I could have become anxious about the time, the tiredness, the too many tasks waiting at home, but instead I relaxed into the moment. Dad finally decided on beef tips with mushrooms over rice. He eats very slowly and he has a huge appetite. And though he has some tremors from his Parkinsonism, he rarely spills a drop of food on his clothing.

Dad has become a cheesecake connoisseur; he could, and often does, order it every night. Of course he had to order dessert since this little diner is renowned for its cheesecakes, mile-high cakes, and Italian pastries. Again, there was a long wait while he decided among cherry, strawberry, or blueberry topping. When I reminded him that he had enjoyed cherry cheesecake so much earlier in the week, he agreed and ordered the cherry.

Then, there was the matter of paying for dinner. Dad pulled out a wad of bills from his pocket, very carefully unfolded them, and counted out the required amount. Then he carefully folded the remaining bills, attached the money clip, and placed it back in his pocket. It would have been so much easier for me to whip out a credit card and complete the whole transaction in a couple of minutes, but why deprive Dad of the pleasure of taking a lady out to dinner?

Sue

Charades

Before Mom went to the hospital, we anticipated that she might not be able to talk for a while. So we joked about playing charades as a form of communication. But we also knew she'd be in pain and probably wouldn't want to laugh, so charades might not be appropriate. But this morning, we've used charades, pictionary, and the written word to decipher the meaning of Mom's grimaces indicating a need. It's all working pretty well, and Mom has actually smiled at some our antics as we tried to understand her.

"We" in this case is me and the nursing staff. I left Dad at home in the care of his home health aid, and my sister is back at work. I got here as soon as I could this morning after a somewhat sleep deprived night. I was awakened at 2:15 a.m. by a call from the nurse who said Mom was agitated and asking for me. Mom was writing notes and the nurse was trying to tell me what she wanted. Finally, I gathered that Mom was having an anxiety attack because she wasn't getting enough attention from the nurses and she was having trouble breathing because of the mucus in her lungs. She wanted me to "come quick." I explained to the nurse that I could not leave Dad alone, and suggested that she pay a bit more attention to Mom for the next few hours. She agreed to do so.

They say it takes a village to raise a child. But as I fell asleep last night I realized that it helps to have a large family, or village, to care for elders, too. Someone to care for Dad night and day; several people to be with Mom most, if not all, the time, someone to take care of all the administrative challenges (paying bills, scheduling, planning for the next day and next week); someone to make money to support all of us; and many friends and supporters to call, email, and pray for us.

After a few more hours of sleep, I got up and prepared to leave as soon as the home health aid arrived. I've been pleasantly surprised and very thankful for Mom's improvement. She's sitting in a chair, and the physical therapist actually had her up walking. The respiratory specialist will be here soon to give her some meds for her lungs.

There's a big mirror in this room. I'm not sure Mom has looked into it, but I didn't need to worry about being the first to show her the post-op Momma.

Sue

Pretty Momma

I'm glad my sister called me this morning from the hospital to warn me about how Mom looks following surgery. My beautiful Momma has stitches (actually staples) from ear to chin, a swollen and bruised face, a tongue so swollen she can't speak, and tubes running all over the place carrying meds in and wastes out of her body.

If Dad wasn't sure what was going on when we sent her off to surgery, he certainly got his dose of reality today. Not only was it a shock to see Mom in this condition, it was a diffcult visit because there was no place for Dad to sit in the ICU room. We'd let him stand there beside the bed holding her hand for a while, then take him out to the hallway to sit down and rest. Then we'd go back in and visit a little more. Finally, I had to take Dad home so that he could get dinner and some rest.

Before going to the hospital, Mom assembled a plastic baggie of essentials that she wanted by her bed. There was no sense in leaving it in ICU, so I'm holding it to take to her tomorrow when, hopefully, she'll be in a regular room. But I noticed that one of the things she put in the bag is a mirror. I'm not ready for her to look in the mirror. I don't want her to feel sad, depressed, fearful that she's never going to be pretty again. Of course, she will be, but it will take time. I'd do anything to spare her the shock and anxiety that's bound to come from that first look in the mirror.

Sue

Blogger wins prize!

News flash...

Your Creative Caregiving blogger just learned she placed second in the Murray City literary competition, short story/essay category, for an essay she submitted.

After winning first place several years ago, this is a bit of a demotion, but I won't whine. And the $10 prize will be put to good use.

Sue

Thankful and Frustrated

The great news is that Mom made it through surgery and the doctor said they believe they removed all the cancer. Thanks be to God! This news came after five hours of waiting and wondering and praying. We were afraid to leave the waiting room for long, even though they gave us a beeper to carry around. So we sat reading, watching a TV (sans volume), and munching on snacks a dear friend of my sister had brought to us.

Once we heard from the doctor, we went to the hospital cafeteria and had dinner while we waited for Mom to get through the recovery process and into an assigned room. After dinner, we went back to the now familiar waiting room. At about 8:30 we were told she had been assigned a room in ICU for the night. However, when we went up to see her and say good night before going home, she was not in ICU and they couldn’t tell us exactly when she’d be there. It seems they had to play musical beds, move another patient to a then-unavailable bed, before they could bring Mom to her room. We waited some more.

Dad was a real trooper through all this, though sometimes he forgot where we were and why we were there. At about 7 p.m., he glanced outside the waiting room and said, “Hey, that looks like a hospital out there!”

But it was Dad, in a burst of clear thinking and decisiveness that he’s always been known for, who said at about 10:30 p.m., “We need to go home now.” We decided he was right. When Mom finally arrived at ICU she would most likely be asleep or so drugged she wouldn’t know we were there. Just before I went to bed at 12:30 a.m., I called the ICU nurse station and learned Mom still had not arrived.

This morning when I checked with the ICU nurses, there was some confusion because they had not yet updated the wall chart to show that Mom was there, and the nurse assigned to Mom was not available to speak with me. These communication difficulties don’t inspire confidence in the hospital! I need another dose of patience.

Sue

Confusion

I see Dad’s confusion and dementia and I make assumptions. I assume he doesn’t understand what Mom is about to go through with her operation. I assume he will not be a reliable “agent” for Mom’s medical decisions if she were to be incapacitated. I assume he cannot understand what’s going on with his financial affairs, that he will forget to pay bills, if Mom is incapable of reminding him or paying them herself.

Certainly there is some evidence to support these assumptions. This leads me to believe I need to take control. Then, all of a sudden, Dad calls me on my assumptions. He expresses resentment that he has not been consulted about something. Or he asks a question that demonstrates he knows and understands more than I assumed.

Maybe I don’t give him enough credit. Maybe I’m not allowing him the dignity he deserves. Maybe I’m the one who is confused! In his own way, Dad is teaching me something about meeting people where they are, being open to their capabilities in the moment, respecting and loving them no matter what. And I think about how I will want to be treated by my family if/when my cognitive abilities begin to deteriorate. (Yikes! Must do more crosswords and Sudoku!) Patience, please, dear God.

Sue

Interpreter

Mom’s hearing has been damaged, though we’re not sure how or why. We’re hoping it’s a temporary condition, perhaps resulting from the swelling in her jaw. Due to his Parkinsons, Dad speaks in a whisper, when he’s able to put words together at all. So, as you can imagine, communication is difficult.

Dad tries to speak. Mom appears to ignore him, though she really can’t hear him. Mom starts speaking at the same time Dad is trying to say something, which stops his train of thought and confuses him.

So here I am serving as interpreter. I hold up a hand for Mom to be quiet as I lean close to try to hear what Dad is saying. After he gets his thought out, I shout it at Mom. This is great material for a dark comedy. If Harold Pinter hasn’t already written this play, perhaps I will.

Sue

Faith Community

On Sunday, I asked Mom for time off to go to a nearby Presbyterian church. I’m missing my church family back home, and I wanted to feel connected to people here who share my faith and who would know how to help if/when we need other community/spiritual resources. I found the people at this church welcoming, empathetic, and helpful. A woman about my age introduced herself before the worship service began, and, afterwards, she introduced me to several others including the pastor and a gentleman who lives in the same senior community where my parents live.

I went home and told Mom that she now has even more people praying for her. She’s very grateful, though she has no experience with Presbyterians (other than me) and said she had hoped I’d go to the Methodist church instead.

As I sat in church I reflected on the meaning of worship. In normal times, I consider it a time of praise and celebration. Though I do take my wants and needs to God in prayer, I think I usually do more thanking than asking. But on Sunday, I was in the asking mode…asking for more patience, more faith that all will go well with Mom’s surgery this week; asking for healing and courage for Mom, for understanding and comfort for Dad.

Sue

Sleepless in Atlanta

I’m not one to lose sleep over anything. If I do wake up, I can usually pray myself back to sleep. The last thing I would normally do is get up, turn on a light, read, or write. For that would surely wake me up for good. But, hey, I’m in a different time and place, and, most certainly, in a different fame of mind. So it’s 2:34 a.m. and I’m writing.

It’s also hot, and the fountain outside, the one I’ve previously found so soothing, is driving me nuts…water torture.

This has been a week of asking “what if…?” and, like some strange scavenger hunt, looking for answers. I met with the home health coordinator at Mom and Dad’s facility to find out what additional resources would be available after Mom comes home from the hospital. What are the costs? What IF (the unthinkable scenario) Mom never comes back from the hospital and Dad needs 24-hour care? What are the costs? Would Medicare cover anything at all? Could Dad and/or Mom be accommodated in the assisted living part of this facility? What are the costs?

Then, looking at all those costs (and I am allergic to numbers, so this gives me a massive headache), I had to ask, how many years would their life savings buy at these different levels of care?

On my “day off,” my sister and I spent the afternoon reviewing all the information I had gathered. Realizing there are many other assisted living options, and some much more geographically convenient to my sister’s home, we visited a couple of facilities and compared costs and other factors.

Fortunately, my sister and I are in agreement about strategies: As long as they can live independently, with a little home health care help, and as long as Mom is tied to doctors, hospitals and treatments in this area, it doesn’t make sense for them to move, They’re in a lovely place and they’ve made friends who are supportive. But if/when it makes more sense for them to be in assisted living, it would be better for them to be in a less expensive place closer to my sister. At that point, they’d be leaving friends anyway and making new ones.

Mom and Dad are facing so much stress this week, anticipating Mom’s surgery, that we don’t want to even mention the possibility of moving; but I feel better having done a little homework. I’ve always been better at long-range planning than living in the moment.

In my scavenger hunt for information this week, I picked up some potentially valuable tips: Dad may be eligible for veteran’s benefits to cover some of his assisted living costs. Though Medicare is no help at all for long-term care, it will cover some in-home hospice care, which might be used to supplement the home health care or assisted living services they pay for. Most people think of hospice as “end-of-life” services, but the director of an assisted living facility told me that hospice is for anyone who has a progressive, chronic illness, and most people would benefit from seeking hospice involvement sooner rather than later.

Will this brain dump allow me to return to sleep? A good bottle of wine might help, but I’m afraid if I tip toe out to my car to retrieve the bottle of pinot grigio (I got rid of the pickles, by the way), I’ll get locked out. My next strategy (and this often works) is to repeat a mantra in my head, which replaces the racing thoughts scrambling my brain. This is a technique adapted from Eric Maisel’s work (see www.ericmaisel.com or google him). Breathe in for five seconds saying/thinking “I am completely…” and breathe out for five seconds saying/thinking “…stopping.” I, personally, find it more helpful to say “I am…a child of God.”

Sue

Pickles and Wine

Some relationships just never change, I guess. I remember when, as a little kid, if I did something Mom wouldn’t like, I’d do whatever I could to hide it from her. I’m talking about little stuff. I learned early on that big mistakes are better confessed as quickly as possible.

I discovered yesterday that I had left one of our shopping bags in the trunk of my car for several days – a bottle of wine and a jar of supposed-to-be-refrigerated dill pickles. Now, I could just take the whole bag upstairs and confess my error. But there’s something about fessing up to the wasted jar of pickles that’s making me want to revert to my kid behavior. The wine isn’t a problem – “Oh, look what I found in the trunk of my car.”

But, then there’s the problem of getting rid of the pickles if I don’t want to tell. I guess I could pull off the side of the road somewhere and dump them. Or, maybe I can find an open dumpster at the supermarket. Oh hell! It takes a lot more energy and creativity to be deceptive. Guess I’ll just confess and be done with it.

Sue

Insecure

Last night as I was helping Dad get ready for bed, I tried to step out of the action and watch the scene from a distance. I realized that I was barking orders, more like a drill sergeant than a loving caregiver. “Pick up your foot…now step over here…” On the other hand, the home health assistant who comes three days a week has a lovely, lilting, Jamaican accent and a soft, soothing tone.

I confessed to Dad as I was helping him that I am still learning how to help him. I asked him to be patient and to tell me if I do something wrong. He thought about that a minute, and asked, “Where do you learn this? Is this something your parents teach you?”

“Yes,” I said, “just like you and Mom are teaching me now.” But, ever since that conversation, I’ve been wondering if I’m doing them a huge disservice by attempting to do things that the home health aid went to school for years to learn and has practiced over many years on the job.

And I’m not the only one who is insecure. I know Mom is nervous about leaving Dad in my care. And Dad may have a legitimate reason for his paranoia!

Tomorrow I’ll make an appointment with someone who can explain the ins and outs of Medicare and secondary insurance. I’ll see about adding some nursing care when Mom gets out of the hospital, and I’ll find out when/how we can claim some of Dad’s care on insurance.

Today Mom had a pulmonary function test and was cleared for her surgery.

Sue

Vulnerability

When my kids were little I felt extremely vulnerable because they were so vulnerable and needed me so much. I was a nervous wreck if I had to fly for a business trip. I always worried about how my family would cope if anything were to happen to me.

Then, when the kids were older and off at college, I felt free again. If anything happened to me I was sure they would be able to handle it and would continue to thrive. And though I'm not ready to leave this world, I'm not afraid.

Now, with my parents in such a vulnerable situation, I worry about my own vulnerability again. And Atlanta traffic is a lot more dangerous than flying! I am trying to be especially careful and I pray that God will protect me – at least through this caregiving time.

This morning Dad asked me what kind of surgery Mom is having. I explained it. Mom had him feel the lump under her jaw. And we talked about how many days away the operation is, how we'll all go to the hospital and stay there until she comes out of surgery. I asked him if he trusts me to take care of him while Mom is in the hospital for a week. He said, "yes," but I'm afraid it will be difficult for him. No matter how much I'll try to do things just the way Mom does, it won't be perfect. And Dad is a perfectionist. This will be a time for grace and forgiveness for everyone.

Gorgeous day! I'm going walking.

Sue

A Great Day!

We had a wonderful day today – thanks be to God! Mom and Dad were both rested and Dad was much more alert and able to participate in conversation. I dared bring up “the elephant in the room,” (see previous post) and Dad agreed to a meeting with their financial advisor to discuss some changes in their investment strategy.

I prepared for this dialogue by working up a rough budget to demonstrate that in most months they are spending more than their fixed income. Though it hasn’t been a problem yet, they can’t go on like this forever. And the deficit will only get worse as their need for home health assistance increases. This is only the toe of the elephant, but you can only eat it one bite at a time.

There was a tense moment in the morning when Dad observed me washing sheets I had brought down from the apartment where I’m staying. He told Mom that he thought I was washing the sheets and getting ready to leave town. Mom told me there was “a rumor going around…” I assured both of them that I just wanted clean sheets and that I had no intention of leaving anytime soon.

All this week Mom has been training me to do things “her way” – things I’ve been doing “wrong” my whole adult life! I’ve learned how to make coffee, do the laundry, and fill the dishwasher – her way. I’ve learned which knife goes in the plain cream cheese and which goes in the salmon cream cheese to spread on bagels. I’ve learned how full to fill their juice glasses, and what proportion of cranberry and orange juice they like at lunchtime. I was doing so well, Mom announced she was giving me a promotion (no raise, though). Then today I blew it (can’t remember exactly what I did wrong) and she said she was demoting me!

At dinner I shared some funny emails I’d received and we all had a lot of laughs. I’m learning to have goals and a plan for the day but to also live in the moment. I’m getting a feel for when I need to go with their flow and when I need to push them a bit to stay on task.

Tomorrow I have the day off!

Sue

Many Blessings

It would be easy to get sucked into despair about my parents' condition. It's heartbreaking to see my handsome, galant, capable father unable to communicate and increasingly less able to move and care for his own bodily functions. It's heartbreaking to see my mother in pain and so worn out from trying to tend to Dad's every need. It's intimidating to have to learn to bathe them, dress them, and make sure Dad get's to the bathroom in time.

Yet, we are so blessed that they are able to live in a wonderful senior community where they have made friends who invite them to dinner and who offer to help. They have a beautiful caregiver who helps them with anything and everything three days a week. And the beauty of their surroundings (especially as spring comes to Atlanta) is breathtaking. Last night I did about six laps of the pond (probably about 1.5 miles) just after sunset. The path is smooth and well lighted. I could hear the frogs and ducks under the bridge. And the sound of the fountains reminded me of the waves at the ocean. I said my "gratitude prayer" as I circled the pond.

And I don't think I've mentioned that I'm living in an apartment with a 90-year-old friend who lives directly upstairs from my parents. Although she's lost most of her vision, she's an incredibly active, on-the-go lady, who is great fun to talk to when I'm "off-duty."

As long as I focus on these and other blessings, I can't feel depressed.

Sue

The Elephant in the Room

It’s easier to talk to Mom about death and risks associated with her surgery than it is to talk about some of the legal decisions that I believe must be made now. When I suggested to Mom that we need to change the medical power of attorney so that Dad is not the sole decision maker if she is unable to make decisions for herself, her response was, “Oh, he’ll never go for that.”

I also believe my sister and I need power of attorney for their bank and investment accounts. If Mom becomes incapacitated for very long, Dad will not be able to write checks to pay the bills. But Dad’s paranoia makes it difficult for him to give up control. And we agree that there’s still a great deal of pride at stake. Here’s a man who, though he has difficulty walking, still wants to open doors for the ladies.

I’ve been watching to see if there’s a time of day when Dad’s medication makes him more (or less) able to think clearly and communicate with us. Yesterday we took Dad to see his neurologist who prescribed a new medication that may help with the dementia and paranoia. I'll give it a chance to work before I try to have this conversation.

I’m happy to say we’ve found some creative solutions to minor challenges: no more confusion about meals; I fix lunch for them and they go to the dining room for dinner and leave me to my ragout (or whatever). We’ve agreed to go out for one meal a week, and I’ll cook dinner for them on Sundays.

A few days ago I finally found a WIFI spot that will allow me to send emails from my mail program. It’s outside a cyber café, which, though closed at 9:30 a.m., still offered a signal I could use. However, when I went back this morning, I got no signal. The search goes on.

Time Warps

We all remembered to change our clocks last night so there was no excuse to miss church (at 3 p.m.!) but we did.

Ever since they began offering church in the senior community where my parents live, I've asked Mom weekly if she attended church. She always says, "No, I intended to, but I couldn't get your father ready in time." I have to admit I thought it was a lame excuse.

We had breakfast in a timely manner. Then we sat down at the desk to sort through bills, medical statements, and other business. At 1:00 p.m., a full two hours before church, I told them to start getting ready. I made them protein shakes so we wouldn't have to take time to eat lunch. But, despite Mom and I both trying to get Dad out of the shower, he wouldn't budge. We arrived at the church service as everyone was gathered outside the room for refreshments.

"Forgot to change your clocks?" someone asked. It was a handy excuse, but I responded, "No, we just underestimated the time to get ready."

Next weekend, we'll have Dad shower on Saturday and sleep in his clothes if necessary!

Sue

Handling Loss

Yesterday, as I was eating my vegetarian ragout, I had a phone call from a cousin with news that my aunt (Dad’s last remaining sibling) had just died. She had been living in a nursing home for some time, and though she had a number of physical ailments, no one thought she had anything immanently life threatening. The call was a shock.

I broke the news to Mom and Dad. Though they live a long distance from my aunt, they had tried to stay in touch via telephone. Calls had become increasingly frustrating because Dad can’t speak, Mom can’t hear, and my aunt (according to Mom) mumbled and held the phone too far from her mouth.

It was difficult to tell how Dad was receiving the news. He was clearly processing the information, but when he tried to ask a question, the words just wouldn’t come out as he intended. I was straining to make sense of what he was trying to say but it was worse than a bad cell phone connection in which you catch only every fifth word.

Finally, he asked about his sister’s first husband, who has been dead more than 20 years. Then, in a rush of words he said, “If I have to do something, I don’t’ have a car.” He probably recalled the funerals for his parents and his other sister and the role he played as executor of his sister’s estate. I assured him that he would not have to do anything this time; all arrangements are being handled by the children.

I know our experience of loss changes as we age. I wonder if Dad considers it her blessing that she's left this life, or if he suffers pangs of abandonment with his last remaining family member gone. For me, every moment of life is precious, but I'm beginning to comprehend how one can be ready to check out.

Sue

Finding the Groove

How do you insert yourself into someone else’s life without taking over in a way that is disruptive rather than helpful? That’s the question I’ve been asking myself. Though Mom and Dad need help, they do have their routines that support independent living. For example, they can go to dinner in the facility dining room or Bistro; in fact, the cost of a certain number of meals is included in their monthly fee, and if they don’t use the dining services, it’s money down the drain.

But I can’t go to dinner with them every night; that would be an extra cost and too expensive. So I had planned to cook for myself and eat as I would at home. Today I had planned to cook a vegetarian dish – kale and bean ragout – which makes enough for leftovers for several meals.

When dinnertime rolled around there was an awkward hour or so when Mom was saying she really wasn’t hungry, Dad wasn’t sure what was going on, and I was trying to persuade the two of them to go to the dining room as usual. It wasn’t that I wasn’t willing to share my ragout, but I knew Mom wouldn’t like it and I had a feeling Dad wouldn’t enjoy a vegetarian meal; he’s more of a meat and potatoes guy. However, Dad seemed to want to stay and eat kale, and by that time, Mom was also trying to persuade to go to the dining room. As they were finally starting to leave, Dad said, “I am really confused.”

I suspect Dad was thinking that I had come to cook dinner for them, as my sister does every few weeks. It’s a treat when they have a special meal cooked for them and they can take a break from the dining room fare. Or perhaps Dad thought it would be rude for them to go off and leave me to eat by myself. Whatever his confusion, he’s not able to express it.

But he’s not the only one confused. Now I’m feeling guilty for not having planned special meals for them. And I have a hard time imagining what to cook for them. I have my everyday (boring) menus that I cook for myself, and I have my gourmet club recipes that are expensive, fattening, and a lot of trouble. It’s going to take some creative thinking and collaboration with Mom and Dad to find the food groove that will serve us all well.

Sue

Where oh where is WIFI?

Before I get too involved in caregiving, I want to get some aspects of my own life in order. Priorities: locate Curves for a tri-weekly workout, and find a convenient WIFI connection. As I write this, I'm sitting in Krogers at a table by the Starbucks Coffee kiosk. I'm able to access the Internet and download email, but I cannot send email from my mail program. I'm sure there's a way to reconfigure my SMTP (or whatever) but why does it have to be so complicated?

I also tried the county library, which boasts WIFI. However, it seems their system doesn't like Macs. Arghhhh! I'm feeling discrimination once again.

I did find the nearest Curves and had a good workout. It's located in a mostly African-American neighborhood and there were only two of us white gals working out. But there's something about grunting and sweating together to upbeat music that erases any other differences. I was reminded of a recent dialogue in my Christian Ed class in which we speculated about how Blacks would feel if they wanderred into our nearly all-white church in the nearly all-white suburbs of Salt Lake. Would we make them feel welcome? Would they choose to stay in a place where they might feel out-of-place? No grunting and sweating there to mute the color differences. Would our friendliness, enthusiastic worship, and singing make them feel like staying?

Well, I've been AWOL from my caregiving duties long enough, so I'd better get back pronto.

Sue

Reporting for Duty

I drove the 30+ miles from my sister’s home to my parents’ apartment Friday morning and reported for duty. First order of business – take Mom to the hair salon. A clean head and pretty do are powerful medications! Then shopping, which, as Mom’s only recreation these days, was also therapeutic.

I was relieved to see Mom looking fairly well and, though she says she lacks energy, she seemed to be up to the usual activities of living. But perhaps that’s what’s been so deceptive; she cooks a little, cleans up, helps Dad dress, etc., and seldom complains. The normalcy of her daily life fooled us all into believing that she was just fine. We never thought to question, “When was the last time you had a physical? …went to the dentist? …had your blood checked?” We were all so shocked at the sudden diagnosis of cancer.

Mom says she wakes up at night and thinks about the ordeal ahead, but she says she isn’t afraid at night. It’s during the day when she thinks about it that she gets worried. It’s unclear whether Dad is worried; because of his dementia and his inability to speak clearly, we can’t always tell what’s going on in his head. However, he did ask if he would be able to go to the hospital with Mom. I assured him that he and I would be right beside her the whole time.

My next job is to figure out the upcoming appointments for further tests and pre-op work. Though Mom said she has an appointment early Monday morning, the only appointment card I saw was for one week from Monday. I feel a little like an understudy who is thrown on stage without having memorized the lines. Watch, listen, figure out what’s happening, and then improvise.

Sweet Home Alabama

This last day on the road could have been a sentimental journey had I not felt so eager to get off the road. I was within a few interstate exits of my birthplace (Birmingham) and other haunts of my youth. But it was a lovely drive and the deeper I drove into the South, the more red bud and dogwood trees I saw in bloom.

As mentioned previously, I enjoy finding local restaurants and motels, but I must admit that Starbucks was a welcome site after two hours of driving on only the watery brew furnished free at the motel. And when I had to stop mid-afternoon for a conference call with a prospective client, I was fortunate to find another Starbucks.

The last 100 miles was a taste of life to come - bumper-to-bumper creeping through Atlanta area rush hour. I don't know how people do this all the time! I will do my best to avoid it as much as possible. I am so thankful to have arrived safely.

Thanks to all who have prayed for my safe travel!

Sue

The Largest Cross

I left Amarillo early driving straight into a glorious sunrise...pink clouds streaking across the horizon. Juxtaposed against God's creation was "the largest cross in the northern (or was it western?) hemisphere," which the sign promised would be a spiritual experience. Sorry, but God's sunrise trumped the cross.

After a few hours on the road, the Texas-shaped waffle I had for breakfast had worn off and I left the Interstate in search of "road food"; that is, food that is not mass-produced by McDonalds, Wendy's, KFC, or any other chain. No such luck. Elk City has been taken over by WalMart and the chains; I could find no local diner. The same was true in town after town I drove through today.

I was more fortunate at dinnertime. In downtown Little Rock, down the street from the Clinton Library, I found "The Flying Fish," an unpretentious restaurant with checkered vinyl tablecloths and garage doors opening the restaurant to the street. I stood in line salivating over the thought of fried catfish, while my conscience told me to order the healthier broiled fish or boiled shrimp. I finally compromised with the fried catfish salad. Wonderful!

Sue

Asian in Amarillo

I often regret not heeding my husband's advice and this is one of those times. Driving into Amarillo he was on the phone telling me about the infamous restaurant here that advertises 72-ounce steaks - if you eat the whole thing, they give it to you free. "But," says my hubby, "they have other, reasonably portioned food there, too."

Instead, I found myself at a Japanese steak house carry-out buying chicken with vegetables and rice to take back to the hotel. Not at all memorable. But there are some travel days when food is less important than rest. If the people in the next room will quiet down, I'm sure I'll sleep well tonight.

Today I wandered through Sante Fe as a respite from hard driving. I parked the car near the old plaza and went into a few little shops, but I was too conscious of time to really enjoy it. Tomorrow will be all hard driving on interstates, but I won't make it as far as Atlanta. Thursday for sure.

Strip motels

Some of the best motels I've ever stayed in were of the ma and pa "strip" motel variety. That is, all rooms at ground level, usually facing a pool or courtyard, where you can park conveniently right by the room. That's where I am tonight. I passed up a nicer Best Western, where all ground floor rooms were being renovated, in favor of this one. I had a choice of "high-end" no smoking/no pets/exceptionally clean rooms, or rooms that allow pets, or rooms (even cheaper) that are closer to the highway. I decided to spring for the exceptionally clean. Though not charming, it is clean.

I stopped at Mom's Cafe in Salina for lunch today since it has been featured on Jane and Michael Stern's "Road Food" reports and my husband is a big Road Food fan. However, I made a big mistake by not ordering one of the things they're famous for (i.e. chicken fried steak) and ordered fish and chips instead. If Jane and Michael had ordered fish and chips, Mom's would never have made it into their report.

I passed up the local cuisine tonight in favor of the meatloaf sandwich I brought from home.

Sue

On the Road (Again)

I love road trips, but it's with mixed feelings that I leave my home for who knows how long. Thankfully, the house and cats are in good hands, but I'll miss them.

I realized this weekend, as I caught myself thinking, "Sue to the rescue," that I'm going into this adventure with my usual control-freak, fix-it mentality. It's a good thing I caught it now because my rational mind knows I cannot fix Mom's cancer. I cannot even fix her depression, which I suspect will come with surgery and disfigurement. Like turning my older teenagers back to God with, "They're you're kids, too; now watch over them..." I must do the same with my parents. I just pray that I may be an instrument of comfort and healing.

I decided not to wear make-up today...I don't want to look too good when I stop for gas at truck stops!

Sue

A new life adventure

I've always had a lousy bedside manner, but that's about to change. My mother has been diagnosed with cancer - in her mouth, lymph node, and possibly jaw bone. She will have surgery, followed by 30 days of radiation. I happen to be at a time in my life when I can drop or delegate most things to be by her side. I don't know what I'm getting myself into. I just know I have to do it.

Dear aunts and grandmothers have died, and I've always said, "I wish I'd spent more time with her." I don't want to have similar regrets about my mother. Despite my previously lousy bedside manner, I'm determined to bring some love, optimism, and cheer into her life. She deserves it. Besides, my dad needs care too. He has Parkinsons and Mom can no longer be his primary care giver.

This will also be an oppotunity to be near my sister and take some of the caregiving burden off of her; she has a demanding job; I'm self-employed.

I believe we are all blessed with creative gifts for living. I believe we are meant to develop and use those gifts and give them away on a regular basis. That is why I intend to approach this chapter in my life as a creative adventure. How will I help my parents find creative solutions to caregiving and other challenges they now face? How can I use my creative gifts to enrich their lives at this time? How can I use creativity to maintain my sanity and balance during what I'm sure will be trying times? How will I stay mentally and physically healthy so that I can help them?

This blog will chronicle my adventures. Some days I'm sure I'll rant; but most days I hope I'll be able to express gratitude for this opportunity for family time, for laughter, for discovering new things about myself and my family - all of which are manifestations of God's grace in my life. And, yes, you'll hear me mention God from time to time.

So, whether you're a friend or a stranger, you're invited to join me regularly or intermitantly on this great adventure.