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.

What Now, Alzheimer's?

     Something new is happening,  and unfortunately, with Alzheimer's disease "new" is not good.  Yesterday while I was out, Bob spent a few hours with Jack, a hospice volunteer.  They enjoyed some opera music, a cup of tea, watched a National Geographic DVD.  Then, out of the blue, Bob became very upset and agitated and would have nothing more to do with Jack.  At one point, Bob even took off but, fortunately, didn't go beyond the carport.  Still, this gesture worried Jack who was rightly feeling responsible for Bob's safety and well-being.  So Jack called me and I came back home as quickly as possible.
      Bob was pretty uptight when I got there and it took another half-hour or so after Jack left for him to relax and be able to move on.  We had a glass of wine together and then ate dinner, but I could sense that he was still not quite relaxed even by the time he went to bed.  He even tried to signal me with hand gestures that he was feeling a bit "off."
      Then this morning when I was trying to help him dress, as I always do now, he became agitated again, asking me several times "why are you doing this?"  I kept trying to distract him (as all the literature suggests), but his agitation lasted for a good hour.  Then all of a sudden he changed again and was ready to get dressed.  Throughout the day, however, he was very restless.  Whenever I was unavailable to do something with him, he was pacing the house and sighing heavily.  We were able to get out for a few hours, ran a couple of errands, walked in the park, and then came home and did a bit of yard work.  He seemed mostly to enjoy all of that activity, but once we were back home and I got busy with balancing the check book and fixing dinner, he resumed his restless pacing.  I tried to help by putting on a PBS Great Performances concert, but he seemed unable to focus on that. He tried taking a nap but that didn't happen, either.
      I know that Alzheimer's eventually begins to affect the emotional center in the brain.  It causes people to lose emotional control.  Some people become agitated and angry.  Some laugh without obvious reason.  Some cry.  I can't help wondering if these episodes this weekend are signs that the disease process is deepening.  It is a little scary to watch this play out in Bob, but even more, it is sad.  I felt such compassion for him when I returned home yesterday because he was so troubled and couldn't begin to express why.  How very frightening and lonely to feel something so intensely but not understand why nor be able to talk about it.

"If Alzheimer's Could Speak..."

This was posted on Facebook one day last week and really touched me.  I admire the empathy of the author who was so able to "get inside" the mind and heart of her loved one.  I am sure, if he could, Bob would tell me this is exactly how he feels:

If Alzheimer's Could Speak...

by Tara Reed

Talk to me...

I can hear your words

and they still touch my soul.

Smile at me...

My eyes can see you and feel your heart

even if I don't remember how to smile back.

Hold my hand...

I can feel your energy when our hands connect.

It makes me feel safe and less alone.

Love me...

 My heart can feel your love even if

my words can't express mine.

Live your life...

Help me on my path but don't press pause

on your life.  Be the vibrant person I know and love.

Trust the process...

I know this is hard and not what we planned

but trust the process.  We can't control it but 

we can choose our focus.  Remember the good

times, know that I am ok and that

you are in my heart always.

Reflection on our Walk

We walk in silence.
Both of us know
you are leaving.

Neither of us can change it.

You have no choice, no say in the matter.
I don't beg you to stay.
That would only make it
harder for you.
You have no choice.

Even though you don't want to leave,
you will keep on going,
keep leaving--me, all of us,
and everything you've ever known,
done, been able to do, loved.

You will keep on leaving
little by little.

And all I can do is
hold your hand,
wait and watch
until you're gone.

You know this.
I know this.

We walk on in silence
holding the knowledge in our hearts
where we don't need words.
We already understand.
Our hands hold on
for our dear life.

                                --May 25, 2016