Finding Our Wings

Thanks to gift vouchers from family and each other, Don and I ventured out of our routine a bit this winter and spring. We began well within our comfort zones with weekend excursions to Condon, Portland, and Lincoln City, then timidly ventured into the unknown of San Mateo. Our trips were short, simple, and delineated by time constraints, but served to bring us much needed respite with a touch of adventure.

 

Although Don and I very willingly put portions of our lives on hold over the last sixteen years, it was difficult to also sacrifice visiting our kids in their own homes, some of which we have never seen. In spite of that, they went over and above in their support of us and their grandparents so we are now anxious to begin making that time up to them before we do anything else. Eventually, we will be able to touch base with the rest of our family, as well, and maybe even plan an adventure of our own, but we are quickly finding out that we have to pace ourselves and our budgets. We hope everyone will be patient with us as we play catch up.

 

 

Our trips thus far have been good learning experiences, though, which have made us more confident with airports, car rentals, and Google map navigation. I might even be able to single-handedly purchase a plane ticket now without clutching the arm of one of my kids lest they leave and I make a wrong decision. Also, once Don has retired, it will be easier to work around my subbing schedule so that we have fewer time constraints.

 

 

In the meantime, we savor what we’ve done so far and continue to budget and to plan. Our wings are a bit rusty, but they still seem to work so, look out! One of these days, probably after you’ve given up on us, we might land in your neighborhood to see what you’re up to.

Trust Me

Danielle’s friend, Ashley, began coming to the house to give Mom perms shortly after she earned her beautician’s license. After going without perms for several years because lying back in the chair or leaning too far forward made her dizzy, it was a huge treat for Mom to have it done again. Alas, however, Ashley eventually moved to Montana so it was a great surprise when she appeared at the door the other day wanting to set up a time to do Mom’s hair while she was home visiting family for the week.

Mom was on the tail end of recovering from the fluid build-up in her system that is an occasional arrhythmia complication, so her first reaction was that it would be too much effort. Taking a chance that she was actually able to weather the process, I insisted that we try so she begrudgingly let us roll her into the kitchen and start. These role-reversed decisions are becoming more frequent. Instead of her cornering me to take a bath, amid avid 8-year old protesting, it is now me pushing past her 98-year old grumping long enough to do something that I feel sure will please her in the end. And, thankfully, this time it did.

Because Ashley could not bring her perm supplies on the plane, she had gone to the trouble of purchasing new curlers, chemicals, and papers for this rendezvous. However, buying another special cape to wrap around Mom’s head and funnel the rinse water into the kitchen sink was not an option so we improvised by using a clean shower curtain of mine to fashion a substitute. The first time, it worked great, but silliness during the second rinse resulted in leaks and minor flooding on the floor. Of course, we stopped to take a picture because, by then, Mom was laughing and quite happy to overlook the drips.

I am thankful that the gamble paid off and Mom is enjoying her perm. Ashley promised to be back next Christmas to do it again, although, I suspect that Mom may not be up to it by then and the effort may too greatly outweigh the resulting pleasure. Some of her appointments are becoming too cumbersome for her now, as well. For instance, at her last annual eye exam she had to be transferred three or four times because her wheel chair didn’t get close enough to the machines. Yet only one of those tests is really necessary for maintaining her quality of life at this point. It is a hard call as to what is truly essential and when; caregivers in all walks of life need lots of prayers to help them make the right decisions at the right moments.

Worth It

 

Mom is wielding a bean bag in the above picture, fulfilling her occupational therapist's belief in her that she can knock down every pin. Twenty minutes and over fifty tries later, it was a reality recorded in the picture below. Faith provided the motivation and willingness to risk failure, but hard work, trial-error-adjustment, and determination created the success.

Also pictured on the right is the pole that the physical therapist has helped her to learn to use as a transfer aid. The horizontal bar lifts and rotates around the pole, then lowers to lock into place to use as a grip. It all adds up to a little more freedom, muscle building, and greater self-esteem. 

Besides fear, Mom has had to overcome self-doubt, apathy, and bias (she didn't want the therapies nor aids in the beginning) and accept help (regardless of its form) in order to move forward in her healing. Before the therapy started, she was depending on faith, alone, for her progress, but we all know that God expects more from us than that. The journey has been psychological, emotional, and physical, and so have the achievements.

So what are we dreaming of that is worth our faith, hard work, and determination?

New Set of Wheels

Mom has a new set of custom-built wheels. Assembled especially for her, this new chariot is low slung with comfort padding and an extended brake system. Over the weekend she has learned to walk and turn the wheels simultaneously, fit through tight spaces, negotiate corners, and cross thresholds without high centering. Although not allowed to tackle ramps, she has the run of most of the main floor, which adds a little interest to her day.

Sometimes one needs to be a bit creative (and quite silly) when trying to negotiate a break in caregiving. It helps to have a good friend:


Dear Lady in Black,
Be prepared; "Operation Sneak Out" goes into effect starting tomorrow night. If Plan "A" to WW is aborted then Plan "B" goes into effect (have your walking shoes on); of course we could always opt out for Plan "C" but it involves a bonfire and your neighbors could get a wee testy. Small fire, though, so it is still in the pot for consideration.
Dress your best, I'm thinking camo (optional) and/or dark clothing would be fitting.
Love,
The Queen of Sneak

Your Sneaky Highness,
You are such a great friend!
I will be ready for whatever adventure we can drum up.
If we make it to WW, though, I'm worried about you driving home at midnight. you are welcome to stay the night. You can have J's room with the sofa bed and the half bath and we'll make sure you are up early to get to work.
Hope I'm not too old for these late night shenanigans. Maybe I can catch a wee nap this afternoon.
Contemplating my disguise...
Lady in Black

Lady in Black,
Last night was fun and I'm ready for the next adventure! I stayed up until 2 am reading my Kindle (did I tell you it was a GOOD story) then slept like a log until I got up at 6 am. Yes, it was a solid 4 hours; no tossing or turning. I felt so refreshed this morning. I really need to borrow the Harry Potter books to catch up on the gap between where I left off and last night's movie. I'm glad you were able to fill me in on the story as we travelled to WW.
The trip home was good, only passed 4 cars so I was able to use my brights most of the trip. Hardly anyone was out in the wee hours of the night.
Thanks for the movie - my turn next time.
Savoring the adventure,
The Queen of Sneak

Queenie,
I'm so glad you had no trouble getting home! Mom and I both had a good day yesterday. I think Tuesday's late night escape did us both good; Mom realized she'd done something special for me, and I got out and did something I really wanted to do (with nearly no guilt). I don't know how you do it on four hours of sleep, though. Although I read awhile too and got one more hour of snoring in than you, I was still falling asleep during So You Think you Can Dance tonight.
I have the books and DVDs ready to send to you so you can fill in the gaps. I was distressed that you had to learn about Dumbledore in such a heartless manner. We should have watched Deathly Hallows, part 1 before our rendezvous, but I was too impatient.
Thanks again for the daring adventure, the pleasure of which will satisfy me for a long time...or, at least, until the next time!
Take care, Queen of Sneak. I remain forever your friend,
Lady in Black

Belly to the Bar!

A physical therapist and an occupational therapist are coming to the house to help Mom for a few weeks. Already we have picked up some helpful information. Among other things, the occupational therapist showed us some bendable silverware that would help compensate for Mom’s crooked fingers and limited range of motion. The first week of physical therapy focused on Mom’s stance and center of gravity.

This first picture is the way she has been standing, even with help, for about a year and a half; in fact, she is straighter than usual in this picture. Normally, she is more bent at the hips and from the waist down she leans farther backwards, like the right half of the letter “X”. The more tired she is the worse she bends and leans.

Here she is after 40 minutes of therapy and practice. It wasn’t until I took these pictures and showed them to her that she understood what she was doing. Holding her hips over her ankles felt very foreign to her so she has to relearn what “normal” feels like. The therapist kept telling her to “belly up to the bar” as a reminder to stick her stomach out and bring her hips forward. It is amazing what a help this is to me during our transfers. I hadn’t realized how much I was unnecessarily being pulled against. I hope we are able to maintain what we learn from these patient women.

I Don't Mind

I don’t mind being on call for bathroom runs, being an extra set of hands for dressing, being the motor for your wheels and I’m glad to fetch, organize, and fix. It’s an honor to do for you as you did for all of us and it is with love that I try to provide companionship, entertainment, dignity, and support.

But I wish you could realize that I am still a work in progress. My patience is long but limited and I am not immune to my own aches, fatigue, and hurt feelings.

I suppose you thought the same thing, though, when I was little and you were over forty, when Dad was weakening, Letha was needing company, and Aunt Blanche was keeping you home. We needed the same kind of attention and care from you that you need now and our fears were often irrational, too.

You have taken care of everyone and now I want to take care of you. It’s not perfect, but I do the best I can and I keep trying to do better. I hope you don’t mind.

Obsession or Creativity?

Here’s my latest project:  a calendar. Not a big deal, but it gives me something fun to do on the computer, which keeps me from going insane, and the final product is actually helpful. I’m quite pleased with the layout and design; plenty of room to write, breaks up the month visually, and includes lots of my favorite pictures. Yes, there are many other things that I should be doing instead, but, oh well.

I have lots of little things to keep my hands and mind occupied during the slower hours of caregiving. I blog, I read, I play with graphics, I photograph, I scrapbook, I pull weeds, I knit and I bake. Even though taking care of someone and making yourself continually available is definitely a great accomplishment and fulfilling in and of itself, having little projects around that are fun (do NOT insert "housekeeping" here) keeps me from feeling trapped and adds a sense of creativity and visible accomplishment to the day.

I wonder if this also explains Mom's determination to do certain things, as well. Maybe she works her crosswords, reads, and continually reorganizes different little areas of her room because she is bored and feeling trapped, too. Until now, I had thought of our roles as being opposite, but maybe caregiving and being cared for are, in  some ways, parallel paths.

What Matters

In our neck of the woods the new year dawned at a clear, crisp eight degrees and was up to a whopping twelve above zero by lunchtime. The sun shone on the ice-covered branches that sparkled against the blue sky and, in between popping in and out of Mom’s room to help her now and then, I leisurely snapped some pictures on this lovely, lazy day. Little did I know that the day would soon change.

Earlier in the week we had learned of the sudden death of my cousin, Shari, on Christmas Eve morning. We spent the ensuing days trying to grasp this unexpected news as memories flooded us. I tried to focus on the thought of her spending Christmas with the very One whose birth we were celebrating. We spent New Years Eve, the day of her funeral service, in prayer so that we might join the family in spirit.

Because of our loss, the first day of 2011 seemed even more like a beginning. We had had a reminder of the sanctity of life and the choice to live it whole heartedly and with humor and love, the way Shari had, and the radiant day seemed to invite us to do just that. Then we heard a double thump on the monitor that links us to Mom when she is in her room followed by her voice calling me. Sure enough, she had fallen. Hanging on to her walker while she reached sideways to pick up a Kleenex off her bed, she lost her delicate balance and tipped over. Somehow, in that narrow, carpeted space between the closet and her bed she scraped her head against something that left an inch-long gouge. A quick trip to the emergency room resulted in a CAT scan to make sure hidden blood vessels were not disturbed and then four staples closed the gap in her scalp. Of course, that took most of the afternoon and we trudged home with much less verve than we had started the day. Although Mom was muttering that she had gone without any makeup on and was appalled at the look of her matted hair when she got home, we were thankful that things were not worse and reassured her that she was not bound for a nursing home. I went to bed hoping for a New Years Day do-over; that this little mishap was not a premonition of things to come. Sure enough, today was better.

Every summer, when we go back to take care of Mom’s house and yard, we visit two of her best friends that are still alive and living in a retirement complex. I have spoken before of their humorous visits in which I am called upon to repeat everyone’s sentences so they can hear better. Last year, we did not get everyone together because Mom was not up to it in June, and her pacemaker surgery kept us from going back. Over Christmas Jen devised a plan for them to have a long distance visit over Skype and recruited a family friend who works at the retirement complex to help us. Today that visit took place and was every bit as hysterical and heart warming as ever. They laughed over age and mixed up memories, they talked over one another and relied on me for repetition and interpretation, they told our friend he was cute, and they waved and told each other good bye and that they loved and missed each other until I finally closed the connection. Their sounds of earnest sincerity will always be with me; a lesson in treasured friendship that I will never forget.

The end of 2010 and the beginning of 2011 has certainly been a time of transition for us. We are different. Things around us are different. We will sorely miss the good things of before, the people and lives that were so familiar and safe, but we have been reminded not to be afraid of what’s ahead. There will be moments of stumbling, but we still have each other to reach for and the light of friendship and love to guide us. Happy New Year to us all. May we live it with as much joy as possible.

Blessed are the Care Givers and Givees

Here's a woman who really knows how to deliver an entertaining invocation! Don't stop it until you hear her whole delivery. Very sweet and very funny.

Restless

It’s the pervading emotion around here. Don was gone most of last week, the house was quiet; it was the perfect time to get things done. But we couldn’t. Or, is it that we wouldn’t? Maybe a little of both.

Until the surgery site fully heals around Mom’s new pacemaker, a danger remains that she may push, pull, or lift too much or too high with her left arm, thus pulling the leader wires out of place. Ironically, in doing its job of stimulating her heart to beat more regularly, the little medical marvel has brought renewed energy that she cannot put to much use yet, which spawns her restlessness and indirectly leads to mine.

Since Mom is forbidden to use her walker because she may lean on it with too much pressure, I have become its three-week replacement. Although I am glad to do so, it definitely shortens the leash for both of us. While it makes her feel like she should refrain from bothering us any more than she can help, I struggle with the frustration of trying to do anything for myself because it either takes me out of the house or I get interrupted multiple times and lose interest. The result is that we grind through our days repeatedly trudging at snail pace between the bathroom or the chair and count as our accomplishments only that of getting dressed and undressed. The highlight of our days is lunch and a DVD.

Although Mom and I tend to sit and mourn what we cannot do, I think that we both circle back to the fact that it is still better than the alternative losses we could have suffered. What’s a little short-term inconvenience? The fact that Mom is restless to be doing more is a good sign of her recovery and, to be truthful, I doubt that I would be any more fruitful if I had a chance, anyway. I find that I mostly feel industrious when I can’t do anything about it; as soon as I’m free, the notion leaves me entirely. So, for the week that’s left of Mom’s restrictions, we will continue to endure, if not with grace and cheerfulness, at least with fortitude, politeness, and thankfulness. Six more days and counting…

Mom's House, Mom's Rules

It is with mixed results that we bring our landscaping expedition full circle. The weather seemed to be working both for and against me, I worked more than connected, and poor Mom had almost bi-polar reactions to the excursion.

The weather somewhat cooperated by issuing rain only at night and offering a chilling sunshine during the day. I had not expected the windchill factor that occurred and was, therefore, left to huddle in a too-small, too-thin, borrowed sweatshirt, but I suppose the bright side of that was the quick dissipation of any hot flashes while I toiled against the weeds. However, Mom, who is always cold, preferred turning up the heat in the house to donning a sweater, so outside was frigid while inside was stifling.

As my stiff, tender joints will attest, I did make some weeding progress. Although I couldn’t make myself go out twice a day as planned, I did stay out long enough each day to accomplish an acceptable amount of work. The cold wind made it less than pleasant to be outside, but the sense of accomplishment was worth it. Regretfully, I did not make time to call any friends. I feel badly about this neglect because they are so good to me, but I will call them first thing when we go back next month. Now that the entire front yard, which is the most noticeable to passersby, is done, I will be able to slow the pace a bit next time and work in some visiting for both Mom and I.

It was difficult for Mom to make the decision to live with us year-round five years ago and so we have made an effort to visit and maintain her home as often as possible. Our trips have declined during the last three summers because of her health issues, but this year the change of venue seemed to be more draining than enjoyable for her. When she came out of her room the first hour we were there, crying over the toilet that kept running, I began to rethink trying to travel with her any more. It is no longer a matter of freeing her from all the planning, packing, cooking, and work. Something has changed this year. After three days of reflection, I am thinking that the mere effort of moving her limbs has become such an all-consuming job that Mom no longer has the energy to find joy in much of anything. She still loves having people visit if they come to her, but even that can become tainted with her worry over whether they are enjoying themselves, or if they still like her, or if Don and I are making them feel welcome, or what she could possibly do for them. Sadly, I think that perhaps her physical frailty has somehow also created an emotional powerlessness.

So our trip has been a success of sorts, but perhaps a hollow one where Mom’s happiness is concerned. Yet, I know deep down that not making the trip would not necessarily have lessened her frustrations and, now that we are back, she is pleased at the accomplishment and at the memory of the two people who had stopped in to see her. I hope this will be enough motivation for her to try again next month.

Off We Go

Today is packing day. I need to spend a couple nights at Mom’s house this week to get some weeding done. While it would be an easy feat for me to pick up and go alone, it is quite a production with Mom along. Don would stay home with her, but it is best if I am around to help her dress. Besides, in spite of her complaints about packing, I think it is good for her to get out of the house for awhile, even if all she does is sit around a different house. And, actually, I do most of the packing anyway.

To save some costs, I plan our meals and bring most of the food with us. That just leaves a little filling in when we get there. In spite of all her camping experiences when she and Dad were younger, Mom has definitely lost her camping spirit. Her idea of what to pack and mine can be considerably different; God forbid she should be expected to put milk on her cereal instead of bringing the Mocha Mix too. And did I forget her favorite marmalade? No, I just didn’t want to rent a UHaul. Regardless of our final negotiations, we manage just fine and both always leave her house feeling better for having been there.

So, here’s to a few days of labor and memories and seeing old friends. May it be worth the packing and unpacking, repacking and re-unpacking that this week will surely bring.

School's Out

Well, almost. Anyway, it’s out for me. Mom is afraid to be alone at all now and the person who checks in on her for me is dealing with a health issue of her own for the next couple weeks, so it was time to quit working. At least I finished May with several nice days of work in a variety of settings.

My last two sub assignments were for a fifth grade class that I certainly enjoyed. It is a fun age because they are fairly autonomous, the curriculum subject matter is interesting, and the kids are cognitively capable of more in-depth processes and activities than primary grades. This particular class was also accustomed to working in small groups, and was currently divided into literature circles that were working their way through a mystery novel and accompanying worksheet packet. Cooperative learning is a skill that not every teacher takes the time to teach so it was nice to see it in action. When I tried a cooperative exercise with students in the same grade at another district, it was soon evident that group work was a new concept for most of them. This class, however, was definitely getting the hang of it.

It has been a great two years of substitute teaching. Being exposed to nearly every grade in different settings and situations has been really beneficial for me. I’ve been challenged and learned a lot about myself and the kids, picked up tips from other teachers, and gained confidence. Certified to teach no higher than eighth grade, I had originally surmised that I would prefer teaching nothing lower than fifth. Now, however, I know that I enjoy every grade because each has something different that is fun or exciting to me. Although no one is more surprised than myself when I say it, first graders have especially won my heart.

Whatever happens from here on out, I (rather restlessly) lay in God’s hands. I have no idea what He has in mind, but my current plan is to take some online classes through Oregon’s state colleges next year that will help me keep my teaching certificate. These classes can be taken randomly at any time to enhance a general license and they can eventually add up to a Reading Endorsement if I choose to continue. It isn’t the Special Ed. Endorsement that I originally thought I wanted, but, until God lays a new dilemma at my feet, I am at peace that it is the right thing for me at the moment. At any rate, whether I ever teach again or not, I find that this mental stimulation helps my sanity during the long, quiet days of caregiving. So, for now, here’s to a warm and relaxing summer vacation!

Rollercoaster Ride

I have decided that this caregiving gig is an unpredictable rollercoaster ride. My days range from being so tame that I am bored to tears, to being a nightmarish, life-changing dilemma about whether to call an ambulance or not. I alternate between feeling sorry for Mom and, God forgive me, being irritated. One minute she is telling me how nice it is to be able to watch a movie together during our lunches and the next she is chiding me for not cleaning my toaster often enough. I think she is also fairly convinced that I don’t ever feed the fish or the cat and that, roughly once a month, my marriage is on the rocks because Don and I aren’t smiling when she happens to look over. *Sigh.* This morning she was concerned that maybe the doctor might have to remove her big toe because it is so sore. “It’s an ingrown toenail, Mom, not gangrene!” “Really?” she asks. *Oi.*

And yet, how can I really be mad at these mere aggravations when Mom so clearly has more than her share of frustrations? Although I didn’t think it was possible, she is slower and has become even more fragile over the last three months. Sometimes I hold my breath as she moves, watching with sadness how much effort it takes her to pick up a foot and shuffle it a few inches. It takes her a minimum of 3 ½ hours to get dressed on the mornings that she doesn’t shower. Of course, that includes makeup and at least three types of moisturizer because one must always be presentable. My feelings of guilt at these moments, for ever having been impatient, drive away the irritation and open the door to appreciation again.

Mom’s vulnerability reminds me how precious life is and, as I stare at her sleeping form in the chair or under her covers, holding my breath until I detect hers, I am thrown around the curve of that ever-moving rollercoaster into thankfulness that we have another day together.

Note: Last night, as I typed the last word of the last sentence above, Mom’s frantic voice barely reached my ears and sent me running into her bedroom. She had fallen and was shook up and in need of assistance in getting up. Thank goodness she was on the carpeted floor and not in the bathroom, so a scrape, some bruises and sore muscles should be the worst of it. Buckle up; we're headed for another go-round!

Skyping

Little by little we are becoming more entrenched in technology. Although not nearly as electronically fluent as our kids, we have, nevertheless, toddled into the twenty-first century in a few ways. Our latest venture is with Skype, a free video conferencing system available over internet.

Mom has had more success with the speaker feature of our latest wireless phones than ever before, but I hoped that video calling would work even better. My goal was for her to have an easier time conversing with family because she would be able to see faces and read lips. Indeed, the back and forth dialog goes more smoothly because Mom can see when the other person is beginning to speak so that she doesn’t try to talk at the same time and she can understand them better because of being able to read lips as well as hear them speak. The added bonus has been that she can now also enjoy the great grandkids more now too. Whenever they wander into the room, they will stop in front of the webcam and wave and say something to her and she can respond back easily. It is so much more natural and carefree than being told to “say something” on the phone. It makes me realize that exchanging smiles can be much more valuable than exchanging mere words. The whole essence of each person comes through so much better when we can experience body language and facial expressions.

Of course, as with anything else, there are some difficulties. Mom’s biggest concern was how she looked. “Oh! They can SEE me? But, I don’t have any makeup on yet!” she protested the first time. That can be a drawback alright. It won’t do to accept a video call in your underwear, although Mom gave Coletta quite a start once by appearing with a mud mask still on her face. It certainly was worth a good laugh, and we can always use more of those. I think Skype is here to stay.

I Can Do It

Startled, I heard Mom’s notebook hit the floor and turned to make sure she wasn’t following its path. She had parked her walker and, using the handle bolted into the door frame, had turned to face the three steps, which Don has made into four half-steps, leading down into the attached apartment. Recognizing that the notebook hadn’t fallen, but was carefully tossed to the bottom of the stairs, I realized what she was doing and resisted the overwhelming urge to go and help her. Rooted to my spot, I watched as she transferred her cane and then her grip to the set of parallel handrails and carefully eased her way down the steps. Once both feet were safely on terra firma, she retrieved her cane, worked her way over to her notebook, and then slowly bent over and picked it up with her free hand before taking it to her desk.


This arduous process is typical for Mom these days. At 96, everything is an effort. Her arthritic knees crunch and hurt when she moves, her balance is terribly unsteady, and her bent fingers and diminished muscle tone make it difficult for her to lift or grasp things. Rushing to her aid is a natural impulse for all of us, but I have found that it is better for her in the long run if I balance it with watchful patience; a quality with which I struggle.

Since I can take those little stairs in one or two strides, it is much easier and quicker for me to transfer items to and from her rooms. When she is sitting comfortably in her chair in the living room, where everything she needs is right around her, I can fix her lunch and bring it to her little table before she can even rise to her feet. Similarly, I can unload the dishwasher and put everything away before she even makes it to the kitchen. When Ellie rings the bells to go outside, Don and I jump up or stroll in from another room to meet her demands with much less effort than it takes Mom. Not only is it faster for us, but we feel like we are helping her in a small way after all the years she helped us and our kids. However, as with everything, there is a gray area.

Too much of this help can have a negative effect; can become almost enabling to the effects of age. I have learned the hard way that when Mom is not allowed to do enough for herself, she not only loses strength and stamina, but also becomes depressed that she isn’t contributing. She feels that she is causing us too much trouble and that we would be freer to do things if she wasn’t around. We have managed to convince her otherwise, but it made us take on a new perspective ourselves.

We still do things for Mom, but we are careful to make sure we don’t rob her of every reason to get up and move around. I may still let Ellie in and out twenty times a day, but I don’t jump up to do it if I see Mom getting to her feet. We clean up the dirty pots and pans, but leave a few glasses on the counter for Mom to put in the dishwasher if she decides to putter in the kitchen after dinner. Although I carry bulky things up and down the stairs for her, I don’t always rush to her rescue over little things now that I know she feels a certain amount of pride in her successful struggles. “I did it!” she proclaims as she straightens up with the notebook in her hand. Once again, she has not let the nineties defeat her.

Where Is Your Whisper?

The following little Greek video from Jean shares what someone affected with dementia might want us to know if they could step outside themselves for a moment. Watching it brought back a flood of feelings and thoughts that must now tumble over themselves to spill out through my fingers onto the keys. Please bear with me...

Many of us have been touched in some way by at least one form of dementia, watching helplessly while someone we love struggles with memory loss, slowly losing the words that could maintain a spindly bridge of understanding. For me it has meant standing on the shore as a child while watching my grandmother float away after several strokes, reaching out to my father as he worked so hard to mentally stay with us while emphysema robbed him of breath, holding my mother-in-law’s hand as we watched her very essence fade before us, and now sadly dreading the weekly decline that I see in the once-lively face of a neighbor.

Dementia, particularly Alzheimers, is a mean disease that clogs the brain, chokes memories, robs emotions, and stabs the very hearts of those left behind to watch its progress. Its victims become at first confused, then frightened, and, finally, silent. There are medicines available that slow its progression and research that brinks on prevention and cure. Until that time, however, it is important to remember that there is always grace.

Born and raised in this American society of independent thinkers and problem-solvers, it took me a while to realize that I could not fix my loved ones. How many times did I patiently, and sometimes not so patiently, try to explain and re-explain what pills to take, how to wash hands or pull up the covers, or why pushing someone down the stairs was not a good idea? Finally, in a moment of grace, I realized that learning was not possible; my friend could not be fixed. The best I could do was analyze each situation and find a temporary solution that might help us both feel less frustrated. I began to hand out each pill to be swallowed, hold her hands in mine under the running water, tuck her in at night, and ask the doctor for medicine to ease the aggression. When she couldn’t remember, I repeated; when she was afraid, I consoled; when she forgot the words, I prayed her prayer aloud and we were both blessed.

This is grace: an unearned gift from God that makes all the difference in the world. To anyone who has just slammed against the wall of Alzheimers, I offer you this ray of hope as you pick yourself up, dust yourself off, and brush away the tears. There is a gift within this loss. Grieve the person who is slipping away, but don’t miss out on this chance to love them more than you ever have before. They need you. They are children, now, who cannot learn, cannot explain, and do not understand why. They need you to make them feel loved and safe. Don’t be afraid; you can do this and you will never be sorry. When you need it, grace will come and you will all be twice blessed.

And for goodness sake, keep your sense of humor! My fondest memory is of Betty animatedly conversing with the lady in the mirror, telling her one day how pretty she was and how glad she was to see her. Poignantly sad, yes, but that is still one of the good memories that balances out the painful ones. If you can’t laugh with a mother who turns herself upside down on the sofa so she can see someone behind her, or who giggles and talks nonstop in rhymes for a week, you will never survive and neither will they. I firmly believe that the moment that they step into heaven, memories released from a mental prison, they will be laughing along with you and marveling at how you stuck with them and gave them dignity and love even when they couldn’t ask.

Although it seems like the person you loved is already gone and only an empty shell is left, I found that they really are still in there somewhere and spending time with them will sometimes reward you with a fleeting glimpse of their spirit. Out of the blue Betty’s eyes would suddenly sparkle as she’d point no where in particular and say, “you know...” like she was in the middle of a conversation. And you know what? Somehow, we did know.

Give It a Try

I joked with Mom that we actually had quite the social calendar this past week. It began with my husband’s family reunion a week ago, then family from my Dad’s side drove up for a visit on Thursday, followed by our weekend adventure in Portland. Mom did pretty well with all of the activity.

I really appreciated my cousin, Shari, and her son, Scott, driving five hours round trip so they could spend some time with Mom. It was good to see Mom laugh and bask in their attention.

Mom was certainly a good sport about traveling on two back-to-back weekends, which I know is more difficult for her these days. For the reunion potluck she was self-conscious about navigating in someone else’s home, trips to the bathroom, and being in the way. All of the family was so good with her, though, that she ended up enjoying herself and feeling that the trip was a success.

She had similar hesitations about going to Portland, too, and was especially nervous about our girls trying to take her out of the hotel while Don and I went to the musical. With much trepidation, I finally told her that I had borrowed a wheelchair to take in case the hotel was not able to honor our requests for a room close to an elevator and exit. She actually seemed relieved rather than irritated (usually I get reprimanded with an adamant, “No! I don’t need one of those yet. I’m not that far gone.”) so I went a step further and told her that if she felt like it, maybe she would want to use it at other times as well. For instance, she would enjoy a trip out for ice cream or shoe shopping a lot more if she didn’t spend all her energy just getting inside the first store. She could ride in the chair until she wanted to get out of it to walk around shoe and clothing displays, etc., then sit back down for a ride to the next store.

She ended up having a great time shopping with Sarah and Jen, although both were nearly fired for their wheelchair driving. They canvassed the length of Washington Square Mall twice in one afternoon and Mom bought a couple gifts and herself some slippers and a pair of Aerosole shoes. When they stopped for ice cream, she polished off a rootbeer float and started making plans for coming back to do some Christmas shopping.

I am so thankful that she had a good time and was successful in her shopping. The girls may have gained a few white hairs, but all for a good cause. Mom’s willingness to try was what made the weekend a success for her, although I know she did it only for our sakes at first. Hopefully, she enjoyed herself enough that it may open up some doors for her being able to do more during our simpler outings here at home. She is more physically frail than she was even six months ago, but her active mind drives her to still want to do things and swings her spirit very low when her body and strength can't keep up. It is a challenge to strike a balance between pushing her to stay physically active (move it or lose it) and making things physically easier for her so she can participate more and enjoy life. For now, anyway, we have had a nice little break in routine and created some new good memories together in the process.

Trust Me

In what Jean Piaget called the sensorimotor stage of cognitive development, from birth to about two, children achieve object permanence. This is the ability to understand that when a person plays peek-a-boo, stepping behind a barrier to “disappear,” the person hasn’t actually left even though they can’t be seen. In a later, pre-operative stage, generally between ages two through six, there is a skill that children acquire called conservation. The example usually given to illustrate it is when a person can distinguish that the amount of liquid poured from a short, fat glass that is completely full into a tall thin glass that becomes only half full is the same in quantity. Today I am wondering if it is possible to lose touch with such cognitive skills once they have been attained, or does Mom really consider me unreliable?

We go through some, in my mind, unnecessary rituals these days; and a greater variety of them is accumulating. It started out with asking me every Saturday if I would curl her hair after she washes it so that it will look nice for church. Why would I say no? I did it the last Saturday and the one before that; but, yes, I’m happy to curl your hair today, too. We also have to reestablish on a nightly basis that I will put drops in her eyes and let the cat in even though those things have been taking place for years. I think the basis for needing these reassurances is that she feels she is a burden and must be polite in re-asking the favors to let us know we are not being taken for granted. But, I ask you, is EVERY NIGHT really necessary?

Recently, I am loathe to say through tightened jaws, we have added to the repertoire. I now have to assert, when prompted, that I still feed the fish and her cat. I mean, come on! Does she actually consider it a possibility that I would let them starve? Me? The unofficial humane society of Eastern Oregon? (*sigh*) I mean, I was stunned the other night when, after I assured her that I had just fed Ellie, she gave me that motherly look of skepticism and pointedly said that Ellie’s dish in the kitchen was empty. (Grrr.) I calmly, though just as pointedly, said that the dish was empty because she ate the food and went outside and that I would feed her again, like ALWAYS, when she came back in for bed.

In all fairness, Mom has always had this tendency, but I think that it is amplified by my taking over more of the responsibilities that were hers for 95 years. She is partly afraid that she will forget as much as that I will forget and even though those things are too hard for her now, she misses being able to do them, being needed, and being active. I get it. (*duck head here and shift feet*) It is just difficult to not take it personally when your very motives and reliability are questioned to the point of insinuation. I really feel that if she doesn’t SEE me do something, she cannot completely believe that I did it; part of her must feel that I am just placating her.

This is when I pray for patience and God answers that he is giving many opportunities to practice it, how many more do I want? I am sure Mom is having the same conversation with him. I wonder which of us will go crazy first.