New Vocabulary, New Experiences

     Delirium.  Haldol.  Visuospatial deficits.  Wheelchair. Handicap placard.  Frequent falls.  5-day's respite care.  These words and phrases are all becoming part of our life now.  Once again, many changes are occurring in our day-to-day life together because of the progression of disease.  Thanks to the ready-and-willing hearts and hands of our next-door friends, we have righted all the falls so far and kept Bob safe when I had to depart early in the morning and he couldn't bring himself to get dressed in time to go along.  Because of the expertise and caring of the hospice team, I have come to understand the delirium (sudden mood change) and to summon the calm I need to make a more helpful response in the moment.  Thanks to medicine, and a few adjustments over the past two weeks, Bob is much more peaceful and content again right now.  With the sturdy shoulder and gentle ways of the hospice counselor, I have been helped to imagine taking advantage of a hospice-covered 5-days of respite care at a facility in town, and will have a tour tomorrow to help my heart "picture" Bob there for that brief time.  Still to come is the handicap placard for which we applied today, and the wheelchair the hospice nurse suggests we get to make our outings a little less stressful.  (The physical therapist ruled out a walker several months ago, saying it would be hard for Bob to learn how to use it now and therefore, could actually become more of a hazard to him than a help.)  As for those "visuospatial deficits," those are problems related to not always being able to judge with his eyes where an object or his own body is in space.  And so he has some "near misses" approaching a chair, can't always find his mouth to brush his teeth or eat, can't quite get his foot into his shoe, and other befuddling (sometimes nerve-wracking) experiences.

      Amid all these new terms and experiences, there are still moments punctuated with more familiar ones--smiles, laughter, hugs, singing, and even dancing. Words have mostly escaped Bob, but not love. Nor has he lost enjoyment of the rabbit or cat or bright oriole passing through our yard. He rarely fails to point out the vivid colors of sunset over the mountains, an unusual cloud formation, or the moon rising into the night sky.  He may scowl in frustration when eating becomes a chore, but he still melts my heart with his sweet smile as he snuggles into bed and we say goodnight.  These are the moments that keep us connecting, and keep me going, even as the "going" gets tougher.

You Never Know

     Last weekend Bob and I managed to do a bit of shopping at Walmart.  He "drove" the shopping cart (meaning he had his hands on the handle bar) and I steered him through the store by holding onto the front corner of the cart.  Off and on, we came upon three women shopping together who looked like they were probably sisters.  One was wearing a T-shirt from Oklahoma State.  As Bob and I exited hand-in-hand into the parking lot, I felt a hand on my shoulder and heard a woman say, "Your love inspires me."  I turned to see one of those three sisters smiling at me.  What a sweet and encouraging gesture she offered.

     This past week, I posted in our "neighborhood watch" group some pictures of Bob, a note about my growing concern that he might sometime wander and seem lost, and information about how to get him back home as well as how to reach me.  Two days later I had this email from a neighbor I do not know but who is an under sheriff in Taos county:  

 "I am writing to let you know that Sheriff Hogrefe has disseminated your, “Heads Up” to the entire Sheriff’s Office and I want to assure you, on behalf of Sheriff Hogrefe and the entire Taos County Sheriff’s Office, that we will be vigilant and rest assured that if we encounter your husband, we will return him home safely. If you ever are in need of assistance, please feel free to contact us at any time."

     Another response to my post was a voicemail message from a neighbor letting me know that he has "walked the path (I am) now on," and letting me know I could call to talk any time.  These simple gestures from 3 different strangers really touched me.  It's comforting and reassuring to know that there are still many people "out there" whose hearts are kind and inclined to helping others.

     We experienced that same kindness and generosity the week before when finishing up at a restaurant just outside of Santa Fe.  Bob needed to use the restroom (which has become an anxiety-producing event for me when we are out since he needs a lot of help doing that now.)  I told him I would take him into the women's room, but was uncomfortable going into the men's room since I didn't know whether anyone was already in there.  Bob was not willing to go to the women's room, so reluctantly, I watched him enter the men's room alone.  I stood waiting nearby, at the end of the completely unoccupied bar. Soon it occurred to me to ask the also unoccupied bartender whether he might check the men's room for me, and explained that I would like to go in and help Bob and why.  Without hesitation he said, with a bit of a Spanish accent, "I go check.  And then I wait outside and keep anyone out."  Relieved, I went in, helped Bob, and returned with him to the dining area.  Sure enough, a rather puzzled-looking gentleman was standing at the end of the bar watching us exit, while the helpful bartender was standing just beyond him offering us a kind smile and gentle wave. It was truly heart-warming to be the recipients of such simple willingness to help.

     This last incident of needing a restroom that Bob and I could use together, on top of numerous other similar situations when we are out and about, has drawn my attention to the need for "family restrooms" in every public place.  These are certainly few and far between here in Taos, and I suspect that would be true all over.  It has also prompted me to make a sign which I carry in my purse to put on a women's restroom door.  It reads:  "My husband has Alzheimer's and needs assistance using the restroom.  We are both inside at this time.  If this makes you uncomfortable, please wait outside. Thank you."  I haven't used it yet, but at least I am prepared.

     

Caution--Rougher Roads Ahead

     I learned something today.  I learned that if company wants our house to be clean when they come, they'd better plan to help clean it--ha, ha!!  Seriously, though, trying to do just a minimum of cleaning this afternoon was a much bigger chore than ever before.  The reason was that Bob wanted desperately to help, but he couldn't seem to figure out how.  Even after I demonstrated something several times (e.g. pulling the fitted sheet corner over the mattress), he didn't even come close to doing what I'd demonstrated.  I asked him if he wanted to dust the kitchen window sills and he said "yes" so I left him with the dust rag and proceeded to vacuum the rug.  Each time I looked in on him, he was rearranging the dish drainer on the counter, running water in the sink, and cleaning out the (already clean) drain stopper.  He never did dust the window sills.  He took a wastebasket from the bedroom to empty into the larger trash can in the kitchen.  When I walked in on him, instead of emptying that basket, he was trying to put into the larger trash container the kitchen footstool, the dust pan, and hand broom--all of which were sitting near the trash container and so distracted him from what he had thought he would do.  He went outside to shake out the dust rag and instead began wiping down the screen door with the same rag.  At one point, he was cleaning off the dust build-up on the vacuum attachment and I thought  that was great--until I noticed he was flicking the pieces of dust onto the already vacuumed rug!  All the Alzheimer's literature says to let the person help you, but sometimes (like today) it seems like not only does Bob's helping make more work for me, but it also makes it harder for him because he knows he's not getting it right.  What a challenging disease this is, and it seems we have only just begun to know the depth and breadth of those challenges.  I'm hanging on tight, expecting this to be a rough ride.

Getting Harder

     It's been a hard week, beginning with last weekend when Bob was agitated with the volunteer on Saturday and then with me on Sunday.  His agitation has occurred again several more times this week.  There was a whole day of it Tuesday, and it's been going on much of today as well.  Twice this week (once today) he took off out the door in frustration? anger? I don't really know what he was feeling, but he expressed it in annoyance with me, though I couldn't begin to say why.  His leaving like this (that's 3 times this week) scares me.  What if I'm not around and aware one time when he takes off?  What if I can't talk him into coming back some time?  It also worries me because it makes me wonder if I'm going to be able to keep him here at home, after all.  I want that with all my heart, but these new manifestations of Alzheimer's are making me seriously question whether it will be possible as the disease progresses.  I'm feeling very sad.