Archive for the ‘Adventia’ Category

Adventias: Grateful for local family…

Saturday, October 5th, 2013

I don’t remember exactly, but I began accompanying Sarah to all routine physician visits sometime eight or nine years ago. At some point, I began taking notes on my laptop instead of on paper, and that Word doc goes back to July 2006.

Along the way, I shepherded Sarah through the emergency room on several occasions. While I am impressed by the breathtaking array of diagnostic tools and tests that modern medicine presents, I am more convinced than ever that no one should ever go to hospital alone.

Having someone to hold a patient’s hand and offer reassurance is nice. But having someone to pay attention, take notes, and make sure that the care received over time remains consistent and appropriate seems essential.

The 11 days I spent in hospital when our girls arrived did little to disabuse me of this view.

Physicians and nurses both vary by day and time. Continuity of care in a hospital setting relies on written notes in patient charts, and oral summaries passed along at each shift change. The longer one is in hospital, the more cursory the hand-offs seem to be. Many times, I have served as third party glue holding Sarah’s treatment on course.

With that in mind, I am immensely grateful to our family for being there for Sarah when I cannot. In particular, huge thanks to our cousin Sharon who, again, dropped everything to be the first family member on the scene when Sarah arrived at the Methodist ER. In addition, Sharon stopped by to check on Sarah and query her nurses every morning on her way into work, at a time when I had to be home tending to toddlers. Thank you, thank you, thank you!


Sharon

Thanks also to my Mom for covering Sarah two days so that I could go into Central Houston and concentrate on my shiny new job. I don’t have any photos of your visits, but I’m glad you were there. Finally, thanks to my brother, Chris, and his family for coming to visit Sarah, too.


Chris with Sierra


Shawnacy with Alles


Izzy with Alles


Chris and Bob

Adventias: Well, that was unexpected… part II

Saturday, October 5th, 2013

In June 2013, Sarah fell and hit her head. The ER attending physician wrote an order to transition to hospice care.

Sarah did not yet meet Medicare eligibility requirements for dementia, but qualified under “failure to thrive.” At just 85 pounds, Sarah had become a tiny slip of a thing.

The hospice physician recommended, and we agreed, to discontinuing all vitamins and mineral supplements. It made me sad to concede that long-term risk of malnutrition is no longer a meaningful concern for Gran’mom.

But then, a funny thing happened. When we stopped filling Sarah’s belly every morning with tiny rocks of calcium, vitamin C, and other supplements, her appetite increased. She ate more food, and she gained back a few pounds. Weight gain is not consistent with end-of-life behavior, and the hospice physician determined that, under Medicare’s rules, Sarah was no longer eligible for hospice care.

So at least temporarily, she “graduated” from hospice on Tuesday, Sept 24, 2013… the same morning that a Belmont nurse found Sarah on the floor by her bed with a fractured hip.

* * *
By all accounts, any hip fracture is a serious injury. Several months ago, our Gran’mere in Ohio fell and cracked her pubis. She was “lucky” to be able to begin PT immediately, without surgery.

In contrast, our Gran’mom has osteoporois. The Methodist Hospital ER physician said the x-ray revealed that when she fell, the neck of Sarah’s right femur was “crushed like a Coke can.” In a young, healthy individual — say, a cyclist or snowboarder — the probability of successfully repairing this injury surgically is around 30-50%, and the risks of complications are significant. In the elderly, treatment almost always requires surgical replacement, followed by months of physical therapy (PT).

However, the purpose of physical therapy is partly to strengthen and primarily to teach someone how to adapt to their new physical (dis)abilities. Because of her dementia, Sarah is not a good candidate for PT. She’s incredibly unlikely to learn how to move without causing herself tremendous pain. In fact, a week later, she is still surprised every time someone informs her that her hip is fractured, which is why she’s hurting.

* * *
After ruling out surgery, Sarah’s prognosis is grim. She will never walk again. Unable to sit up well, she requires someone to feed her and offer her water. Within days of becoming bedbound, her ancient and fragile skin is already breaking down, on its way toward developing painful sores and potentially, infection. The fracture will never heal, so she will endure chronic pain, and require opiates for pain relief. As her body acclimates to the opiates, she will require larger doses for less benefit. The morphine will suppress her appetite and her respiration.

Dr. L, the wonderful internal medicine doctor who has supervised Sarah’s care at Methodist Hospital, says that he is unsure how quickly Sarah will decline, but he does not expect her to “bounce back” or even plateau. He’s clear on the direction of her trajectory, if not the slope.

After spending six nights at Methodist Hospital, Sarah was transferred to nearby Houston Hospice. There is a small potential that Sarah will stabilize, continue to eat, and require transfer to a long-term skilled nursing facility. But our current expectation is for Sarah’s care to focus on attempting to keep her comfortable while she winds down to a gentle end.


Dr. L listening to Sarah’s erratic heart rhythm


Sarah gazing up at her niece, Sharon

Adventias: Yet another moving day

Friday, July 15th, 2011

The last time I wrote about our Gran’mom, her brother Frank had just moved from Las Vegas to Houston to live in the same assisted living facility with her. Sharon and I were both optimistic that having a sibling in the same building would be both reassuring and entertaining to both of them.

I’m sad to say that’s not how things turned out.

Best we can tell, Sarah is unable to internalize that her brother now lives in the same building. If Sharon or I get the two of them together for a meal or visit, and explain who’s who, Sarah understands who Frank is and they relate to each other. But most of the other times, he’s just “some old goat” who shows up at her door, wants to sit with her at meals, and meddles about what she’s eating or doing. Belmont staff told us that Sarah and Frank would escalate to bickering at each other in the time it took to walk together from her room and ride the elevator to the first floor, by which point, sitting together in the dining room didn’t work.

For Sarah’s part, she doesn’t remember these interchanges and is apparently not upset by them. But poor Frank is deeply concerned over the condition his big sister is in and really wants to help her stay as healthy and happy as possible. It really wounds him when she rejects him so callously, and it saddens me that we got them together too late to enjoy a robust sibling relationship. Sharon and I will continue to get them together for meals or other events from time to time, but daily togetherness isn’t working.

* * *

What’s more, it became clear that Sarah was becoming less copacetic in general. Some of the behaviors we/staff observed:

  • Refusing staff direction/help to bathe and/or change clothes, and wearing the same clothes nonstop for weeks on end
  • Telling staff she didn’t know where she’s supposed to be or what she should do, repeatedly
  • Standing aimlessly in the hallway, apparently uncertain where to go, and declining direction to join group activities
  • Standing in the middle of the dining room for 30+ minutes, unable to sit at a full table that she perceives as “her’s”, and unable to choose (refusing to choose?) an empty seat at another table instead

In addition, Sharon drove Sarah to lunch and observed:

  • In the car, Sarah declared, “Wow! I don’t think I’ve ever seen an all-white car!”, and then expressed the same revelation 20+ additional times during the 5-mile trip to and from the restaurant
  • At the restaurant, Sarah was repeatedly discomfited by their loud/gregarious waiter, and told Sharon, “If he ‘shouts’ at me one more time, I’m going to say something rude back to him!”

So two and a half years after we moved Sarah to Belmont, we made the tough decision that it was time for Sarah to leave the (large) “assisted living” section and move to the (small) secure dementia “Neighborhood,” where the higher staffing ratio provides more one-on-one direction.

Given that familiarity and routine are essential to help someone with memory impairment function, moving obviously poses serious challenges. We got really lucky in that the room available for Sarah in the “Neighborhood” was the same basic floorplan and orientation as her room upstairs, just a little smaller. That made it possible to move almost all of her furniture and keep it in essentially the same configuration. That was the first hurdle.

The second hurdle was figuring out how to effect the move with minimal disruption to Sarah’s existence, but we pulled it off on June 8, 2011. Sharon whisked Sarah away for a *long* (4-hour) “lunch” while staff moved her furniture and belongings to the new room, and Bill and I set everything up again, which went remarkably smoothly. Prior to the move, Jean and I talked with her about moving and while Sarah acknowledged the merits of having full-time staff help available, she said she “wasn’t interested in moving.” But once we brought her back to the new room, she didn’t get upset. She said that it felt “totally unfamiliar” but also thanked me profusely for all my help.

The next day, I went back to meet movers to pack and return Sarah’s excess furniture and clothing to her condo in Galveston. Thankfully, Jean met the movers at that end, saving me the 100-mile round trip. Two days of moving antics while four-months pregnant with twins was exhausting, and it took me two days of downtime afterward to recover. But I did what I had to do to minimize the disruption for Sarah.

disassembling #269

disassembling #269
Disassembling, packing, and moving out of #269

exploring #141
Sarah and Jean exploring #141 over the weekend before the move

pictures up
Pictures up in the same places feel familiar

Gran'mom in new room
Gran’mom in her accustomed spot on the loveseat, but in #141

Since the move, Sarah has not only come to meals without incident, she has even participated in the group activities, which is a welcome improvement. She is also now allowing staff to help her bathe periodically and change clothes almost daily. In general, she seems more copacetic than she did before the move.

As explanation, staff suggested that Belmont had become bigger than Sarah could process, which was overwhelming and agitating. But the “Neighborhood” is a smaller, more manageable scale, and easier for Sarah to wrap her head around. While I was very anxious about how she would handle the move, I am confident now that it was the right shift at the right time.

Adventias: Moving day, the sequel

Saturday, March 19th, 2011

Two years ago, I moved Gran’mom into Belmont Village, an assisted living facility here in Houston. Sarah’s younger brother Frank was living in Las Vegas, and his wonderful wife, Gitta, died around the same time, leaving him alone there.

Two years later, Frank is needing some of the care Sarah has been getting. A few weeks ago, his daughter Sharon asked Frank if he would consider moving to Houston, where she could help him more easily and he could be close to Sarah. He agreed, and — unlike some of us — didn’t spend months weighing the merits of moving. With the help of much heroic coordination by Sharon, Al, Nancy, and Chrissy, Frank arrived here Friday. (I can’t begin to do their efforts justice here, but my hat is off to them!)

Frank and Sharon
Frank and Sharon woke at 3:30 am to fly to Houston Friday

Sarah and I joined Frank and Sharon for a welcome dinner in Belmont’s dining room, where we enjoyed a merry and emotional hour catching up and scheming entertaining diversions to pursue together in the weeks and months ahead. (Anyone want to come celebrate several August birthdays together in Houston this year? This family has quite the critical mass of them…) Afterward, we sat a while on the flower balcony and enjoyed the fine spring evening.

Frank and Sarah
Frank and Sarah

Frank and Sarah

Finally, we were all ready to part company for bed. But before we left, Frank made plans to join Sarah for breakfast, and we all agreed to visit again soon. I know moving is hard, but I’m overwhelmingly optimistic about Frank’s arrival here. Not only will Frank have better access to good medical care and better supervision with family in town, but also the potential for Frank and Sarah to entertain each other is enormous. This could be fun!

Stormy
Frank brought along Stormy, his charming new companion

Adventias: Behold the power of pharma

Monday, February 14th, 2011

By the winter of 2009, dementia was really taking a toll on our Gran’mom. If I asked her whether she’d prefer turkey or ham in her sandwich, she’d look at me for a moment, look away for a moment, and then perk up brightly and tell me something about her cat. She called me less and less often, and when she did call, conversations were challenging.

Beginning an anti-dementia drug in March 2010 markedly improved Sarah’s function, albeit not without some hiccups.

In December 2010, I finally got motivated to find Sarah a new neurologist (or, new-rologist) in Houston. Our cousin Sharon is a research coordinator for Methodist Hospital’s Neurological Institute and she secured an appointment for Sarah with the director of their National Alzheimer Center. Dr. R is an experienced and knowledgeable clinician, and despite his impressive responsibilities, he spent almost two hours kindly and patiently learning Sarah’s history and evaluating her cognitive function.

When I told Dr. R about Sarah’s improvement on Aricept, he told us about a second anti-dementia drug called Namenda. He said that it works on a second set of metabolic pathways, and encouraged us to take home a 4-week trial. Sarah started it the next morning.

At first, I didn’t notice any changes as the dose ramped up. But during Sarah’s fifth week on Namenda, things got interesting. First, consider Tuesday:

  • Sarah called and woke me up (she called!) wanting to confirm that I would take her to the podiatrist. She was looking incorrectly at Wednesday (rather than Tuesday) in her calendar book, but she was using her calendar book again.
  • At 10:30 am, Sarah called again (she called!) wanting to know where Sammy and Gracie (her late parents) were. Startled, I asked what she meant. She told me that they’d flown to Jacksonville like they usually do and she’d picked them up at the airport, but now she was at “her office” and she couldn’t find them. (?!?) After I worked up to gently explaining that her parents had been dead for about 40 years, Sarah told me I was scaring the socks off her.
  • Around 4:00 pm, Sarah called again (she called!) wanting to know where my parents were. She told me that they had dropped her off at Belmont just long enough to go up and check on her cat (?!?), but when she came back downstairs, they were gone. After I worked up to gently explaining that my parents hadn’t been to visit her since Christmas, she again told me I was scaring the socks off her. I learned later from Belmont’s concierge that Sarah had actually gone outside several times, approached another family who drove a familiar-looking Honda, and walked as far as the street looking for my parents. Yikes!

Now, consider Wednesday:

  • I collected Sarah and we went to the podiatrist together. She seemed more alert, more observant, and more conversational than I remember her being in ages.
  • The in-house physical therapist told me excitedly that Sarah had just had the best PT session, ever. He said that her coordination was better, she was less distractable, and she stayed focused for a whole hour.
  • After lunch, we talked about making a grocery list. She asserted that she needed soap, and when I asked what kind, she thought for a moment with furrowed brow and then asked, “does Yardley’s make a lavender soap?” She used Yardley’s for decades but I haven’t seen her recall its existence in several years. Startled, I exclaimed, “I’m so delighted with how much sharper you seem this week!” to which she replied, “Me, too!” Turning toward the window she added, “It’s like when you open the blinds and the sun comes back in.”

Goosebumps. I don’t understand all of what happened Tuesday, but I’ll take it if it gets Sarah more Wednesdays.

* * *
I join Sarah for lunch or dinner about once a week, and we usually sit with some of her neighbors. A few are adept conversationalists who face physical challenges, but many face cognitive challenges similar to Sarah’s, and I’m often responsible for facilitating the conversation.

But not last week. For a change, I mostly listened while Sarah and her neighbor Evelyn swapped stories from their younger days. For more than an hour, they wove a fascinating conversation about S&H green stamps, and picking cotton, and what the stove and other amenities were like in their mothers’ kitchens, and more.

Sarah and neighbors at lunch
Sarah at lunch with her neighbors, Rhoda and Evelyn.

I don’t know how the Aricept and Namenda are working or for how long they will help. But seeing Sarah reclaim the ability to engage and reminisce is a gift for which I’m profoundly grateful.

Adventias: Picking my battles…

Sunday, June 6th, 2010

Robin and Sarah lunching
Robin and Sarah at lunch at Belmont

Our Gran’mom has been taking an anti-dementia drug for three months. Aricept is definitely allowing her to function better, but I can’t say that she’s functioning well:

  • she brings dishes upstairs from the communal dining room, unaware that she has her own dishes inside her cupboard;
  • she wraps breakfast bacon in paper napkins each morning and stows it in her clutch with her glasses to carry it upstairs for her cat, and forgets to take it out and give it to him; and
  • she cut her own hair, unaware that she could go upstairs to the in-house hair-dresser, or have me drive her to a local salon.

Over time, she’s developing new preferences and new ways to do things. One of the challenges of loving someone with dementia is discerning which behaviors are merely new and distracting and which warrant intervention.

Counter-top kitty

Case in point: for as long as I can remember, Sarah insisted that cats belong on the floor. First CiRT, then Una Mas, and then Zachary were each taught to stay off of the table and off the kitchen counters. If one of them transgressed, there was something in the genteelly stern way she said quietly, “CiRT, please get off of the table,” that led them to jump down.

With dementia, Sarah is becoming ever more lenient with her cat. At first she began allowing Zachary on the counters. Later, if I would help shoo him down, she scolded me for being insensitive to her cat. She tells me now that it’s convenient to scritch his ears if he’s up at counter level. Most recently, she has begun feeding him on the counter on purpose.

This shouldn’t be a big deal. Bill and I routinely have our cat on the counter, so this shouldn’t trouble me. And yet, my first impulse is to draw a line in the sand and ‘help’ her enforce her lifelong rule. But she plainly perceives this as bossy meddling, rather than help.

I guess this change bothers me precisely because it’s counter to Healthy Sarah’s life-long rule. It highlights how she’s changed. I’m probably also being rigid. But no real harm is done, and fighting over it isn’t good for either of us. I obviously need to let it go.

Zachary on the counter
Zachary on the counter nosing bacon of indeterminate age

Clandestine bacon

In contrast, the bacon-hoarding behavior I described above is more concerning. When I lunched with Sarah Saturday, I noticed that her clutch was stuffed with paper napkins again. I pulled them out and revealed that each was in fact a little bundle of breakfast bacon, eight days worth in all.

Sarah intends to take this bacon upstairs and present it to Zachary as a loving and generous (if really unhealthy) cat treat. She succeeds occasionally, too. But more often, she forgets, and white paper napkins in her clutch don’t look like bacon.

When I told her I was going to dispose of her bacon stash, because it was unrefrigerated and might make Zachary sick, she got very, very angry with me. She insisted that I couldn’t possibly know the status of the bacon because I’m not there everyday. She snatched the bundle away from me and told me I should mind my own business.

Realistically, bacon that’s both cured and cooked is probably fine at room temperature for a few days, and cats have strong stomachs. But given that I found another stash of indetermiate age in the cupboard, and given that she’d be crushed if anything happened to Zachary, I decided to work with Belmont staff to redirect her process despite her protests.

Elevated dishes

The same visit when I made Sarah so angry over the bacon, I delighted her by resolving a mystery. Three visits ago, she asked me if I knew where her Pyrex cat dishes were, and I didn’t. Two visits ago, I searched through all of her cabinets and drawers, but with no luck. I assumed that she’d put them somewhere and they’d turn up eventually. I couldn’t imagine anyone stealing these dishes.

On Saturday, after the bacon episode, she asked me again where her Pyrex dishes are. When I said again that I didn’t know because I wasn’t here when they got put away, she said angrily, “You know so much about everything else that goes on when you’re not here that you should have no trouble finding them.” Nice.

To appease her, I looked again. This time, I pulled a chair over so I could look *on top* of the kicthenette cabinets. Sure enough, I found not only the three missing Pyrex bowls, but also six other dishes, each with a few crumbs of cat food left in them.

dishes from the cabinet top
I found nine dishes on top of Sarah’s cabinets

?!?

When I asked her how on earth these dishes all got up there, she professed to have no idea, but observed that Zachary often jumps up there. I can imagine her logic: if Zachary is going to spend time on the cabinets, then he needs food up there, too. When I asked if it was possible that she placed food up there and forgot the dishes, she said:

“No, because I can’t see them when I stand on the counter.”

(I’m sorry… when you do what?!? Note to self: if Belmont ever calls to say that our Gran fell and broke her neck, I’ll remember that it was likely self-inflicted.)

I’m betting that she put the food dishes up there and forgot them once they were out of sight. Hypothetically, she may have cajoled one of her PALs into putting them up there. Either way, they’ve been up there for months and she’s delighted that I found them.

The last time we really argued — December 2008 — the unhappy memory stuck with her off and on for a year, occasionally popping up and leading her not to call me “because Robin isn’t talking to me right now.” I’m more than a little worried that the same thing may happen again. It’s important to me to avoid creating a negative episode that might color our whole relationship.

But on this day, perhaps with the help of the Aricept, Sarah was contrite. Before I departed, she apologized for “being so obdurate.” (Great word!) And she called me twice later that same evening to apologize for losing her temper. So right now, this battle is behind us. As for the next few weeks, we’ll see.

Adventias: Intercepting dementia…

Monday, May 31st, 2010

When Sarah’s doctor first offered to prescribe an anti-dementia drug in early 2008, we told him “no, thank you.” Sarah hated the idea of taking “One. More. Pill.” I am skeptical of Big Pharma and the drugs seemed geared to help Alzheimer’s rather than vascular dementia. Worse, she’d had an adverse reaction to a new drug just months earlier. Gran’mom and I agreed to leave well enough alone.

Since then, Sarah’s cognitive function continued to decline:

  • She stopped using the menu to choose meals and succumbed to just letting servers bring her the daily “special”;
  • She forgot how to use her calendar book, and eventually forgot that she had a calendar book; and
  • She called me less and less often.

Over time, my fiercely independent Gran’mom became quiet and docile. In her confusion, she was eager to trust a confident family member to lead her through whatever would come next. Anytime I showed up, she was happy to see me and easy to please. If I pushed a visit back a day to meet a work deadline, she didn’t seem to notice, because being aware that I had rescheduled would require knowing to expect me in the first place.

I have to admit now that caring for Sarah seemed easier probably as much because confusion made her less able to experience and express frustration as because Belmont takes good care of her.

In February, I took Sarah for a routine checkup and she told Dr. Q that “I feel confused all of the time.” When he invited us to reconsider an anti-dementia drug, we did.

As Dr. Q walked us through the detailed pharmaceutical information, we learned that clinical trials for Aricept had differentiated between patients with vascular dementia versus Alzheimer’s dementia. The research indicated some benefits for memory function and specific benefits for “executive function.” It sounded like Aricept might actually help her.

I asked Sarah how she felt about trying a new drug that might relieve some of her confusion. This time, she said any improvement would be welcome, and allowed as how trying a new drug for a few weeks to see if it worked sounded like a good idea. Dr. Q wrote the scrip and the pharmacy delivered the new pills that same night.

The current scientific hypothesis for dementia is that some people, for a host of reasons over time, lose their ability to clear beta-amyloid protein from their brains. This sticky protein forms plaques and tangles that kill neurons and impair brain function as they accumulate, literally gumming up the works. Aricept ostensibly helps clear this protein to preserve brain function.

Patients who respond well generally see improvements over 6+ weeks. We saw differences in Sarah within four days.

At first she was still confused, but she became assertive again. Sarah rang my phone daily for a week with questions about when I would shop for groceries, and where her car is, and whether she still owned a condo in Galveston.

By April, she seemed less confused. Sarah knew what day it was and began using her calendar book again. She was already dressed and ready to accompany Jean to the symphony when Jean called to remind her to get ready. That hadn’t happened in months.

Now she’s even seeming more self-aware. I mentioned her condo last week, and sounding wistful she asked, “do you think I’ll ever get back there?” As gently as I could, I said, “I don’t think so.” We’ve had this exchange many times since Hurricane Ike and she usually asks me, “why not?” But this time she said quietly, “I don’t think so either. I’m acutely aware how dependent I have become on others to get by.”

Wow.

I’m really excited that Sarah is functioning better. I’m also challenged: as she improves, Sarah has more opinions and more persistence which means more opportunities to argue. But I’ll save those pitfalls for another post.

Regardless, it’s readily apparent that Aricept is making a difference for Sarah. I know that it can’t bring her all the way back from all the vascular damage that’s been done. But I’m optimistic that it will significantly slow the progression of this terrible disease. And that’s a good thing.

Adventias: Wonderful willow waterhole!

Sunday, April 4th, 2010

I spend time with my Gran’mom most every week. Often as I’m driving home from visiting her, I think of writing about some aspect of our visit, but I apparently get over it before I get home. I’m amazed that I haven’t written about Sarah since last June. My relatively low level of stress about her care is clearly a result of the great job they’re doing at Belmont Village!

With Sarah finally settled in and relatively comfortable in her new environs (it’s been 16 months), there’s been a lot less drama. Mostly she’s just eager for company and social interaction with people who don’t feel like strangers (i.e. family), which has allowed our visits to become quite mundane. If I show up with a box of Twinings decaffeinated Earl Grey tea and a bag of chocolate chip (or oatmeal raisin) cookies, she’s happy. If I stay and join her for lunch or dinner, she’s delighted. If I bring her drycleaning, sort her laundry, or hang a photo, she’s ecstatic.

But these mundane visits aren’t especially memorable. One Friday afternoon, she called me, said she’d been trying to get a hold of me for “weeks,” and asked if she was ever going to see me again. I reminded her gently that we’d spent the previous afternoon together and shared a pot of tea, which she admitted she remembered after I reminded her. But clearly the event wasn’t novel enough to trump her pervasive sense of isolation.

Since then, I’ve been making an effort to make my visits more memorable. Instead of lunching in the dining room, I’ve started bringing turkey sandwiches for us to take outside and eat in Belmont’s back yard. Between the birds, the big oak tree, and the traffic in the shopping center next door, there’s plenty to observe and she really enjoys it. (I’ve hoped that she’d find her way out there between my visits, but the route to the back yard has remained elusive for her.)

I imagine that Sarah would have enjoyed the back yard again today, but I decided to change the scenery for my own sake. We took our sandwiches down to Brays Bayou and hunted some bluebonnets:

Brays bayou
Brays bayou and bike trail


Sarah and Bob picnicing

Braeswood bluebonnets
More bluebonnets on South Braeswood

Sarah with bluebonnets
Sarah with bluebonnets

Sarah tells me she’s never seen bluebonnets before. While many of Sarah’s “never” assertions really reflect missing memories, this one may be true. She’s only lived in Texas for ten years, bluebonnets are a short-lived prairie flower, and Sarah lived on the coast. Regardless, she really enjoyed how intensely blue the flowers are, and how striking a vast carpet of bluebonnets appears.

After the bluebonnets, we sought out the new Willow Waterhole. This clever flood control project is designed to create both natural habitat and recreational green space in the city while reducing flood risk for property owners. I know civic leaders who have worked on this project for years, but until my friend Susan reminded me, I didn’t realize any of it was finished. The final detention areas and park enhancements won’t be finished until 2015, but the first two ponds are open and lovely. Sarah and I sat in the quiet and enjoyed a little birdwatching:

Willow Waterhole
Willow Waterhole

egret
Egret on the far shore, beyond the reach of my lens

For the last 50 years, both in Florida and Galveston, Sarah always had access to lakes and wetlands and natural bird habitat. Judging by how raptly she observes the doves and grackles outside her bedroom window, I imagine she misses that, even when she doesn’t consciously remember it. I hope that visiting Willow Waterhole will help.

After two hours out in the 80-degree heat, Sarah said, “I hate to go but I’m just physically exhausted.” But she agreed that it’s a lovely quiet spot for birdwatching, and expressed interest in bringing our sandwiches here again. And I trust that our afternoon will be memorable, at least for a little while.

Happy Thanksgiving!

Friday, November 27th, 2009

Bill and I were delighted to host Thanksgiving for our immediate families again this year. Chuck and Jean came up from Galveston, Nancy came down from Conroe, Sarah came over from Belmont, and Chris and Shawn came from across town with their girls. Better still, Shawn volunteered both to roast the turkey and bring her famous flourless chocolate cake for dessert. Yum!

Izzy and Sierra
Izzy and Sierra (click for larger and here for another version)

Chris carried in the turkey
Chris carried in the turkey

Chuck and Izzy
Chuck and Izzy

Holzer-Blackwell family gathered
Assembled Holzer and Blackwell families (click for larger)

Shawn's chocolate cake
Shawnacy’s famous chocolate cake

chocolate cake stars

Much friendly conversation and yumminess was had by all!

While our dinner carried on long-standing traditions, our schedule was new. As Sarah’s dementia has advanced, she experiences a common effect called “sundowning.” Essentially, her cognition is best early in the day when she’s rested, and declines rapidly later in the day as she gets tired. Planning her schedule and ours accordingly is helpful for everyone involved.

So after 30+ years of evening Thanksgiving dinners, we’ve now done “dinner” at 2:00 pm twice. That means getting up earlier to finish cooking and prepping. But it also means that by 6 pm, the food was put away, the dishes were clean, the house was back in order, and Bill, Tibbs, and I were relaxing on the couch. Which was awesome. I don’t know how the rest of our family feels about it, but I’d love it if this midday timing became a new family tradition.

Adventias: Perils of skin care without a routine

Tuesday, June 2nd, 2009

This week marks six months our Gran’mom has been in assisted living. Supporting her through her memory and cognitive difficulties remains challenging. However, the fact that I’m only moved to write about it once a month is a testament to the fine quality of support she’s getting from Belmont Village, the assisted living facility we chose.

Nonetheless, poor Sarah is struggling with a recurring dermatitis on her neck. While we’ve all heard horror stories of skin infections picked up in hospitals and other institutions, this is something quite different, and related to her dementia.

Sarah's raging dermatitis
Sarah’s poor neck is red and angry-looking

The dermatologist (whom I adore) is very clear that Sarah has a contact/irritant dermatitis. In fact, there’s no infection at all. Her skin is just very, very irritated. And while we initially looked for detergents or other irritants, the culprit is always — this is the third time — a skin care product that Sarah is using incorrectly:

  • The first time was a year ago when she was still living alone. Sarah continued using a topical steroid cream after the prescribed duration and developed a typical steroid overuse reaction. As the reaction spread, she refilled the steroid prescription and used more of it, worsening the reaction further.
  • The second time was this spring at Belmont. She somehow acquired a new skin cleanser. She decided to use it like the makeup removers she remembered from earlier years, spreading it on with fingers and wiping it off with tissues, not understanding that it was a “shower scrub” intended to be rinsed off thoroughly. Again, her skin became so irritated that the dermatologist had to prescribe a course of steroids.
  • Cetaphil

  • She’s now reacting again. Apparently, when faced with both Cetaphil bar soap and Cetaphil liquid soap from the dermatologist, she assumed the second product must be lotion and used it as such. Even a super-gentle soap like Cetaphil is irritating when left on skin without rinsing.

Each time, I have written simple “Skin Care instructions” based on the dermatologist’s directions. A year ago, that was sufficient, but now, Sarah soon allows the page to get “lost” in her room. And while the facility she’s in does a great job of ensuring prescription medications are dispensed on schedule and used properly, they cannot control what she does in her room by herself.

And that’s the rub. Sarah really, really wants to be independent and resists meddling. But left to her own devices, her memory impairment gets her into trouble. Fortunately, this dermatitis clears up within weeks, which isn’t the end of the world. But it would be nice to save her the repeat performances.