Sunday, June 10, 2012

Waiting for "The Next Big Thing"

I don't have a whole lot to report this week, except to say that my grandmother seems to be in a "holding pattern."  She was doing fairly well when I visited her on Sunday - having lunch at her regular table with her friend, Evelyn.  She could not communicate, and she ate like a bird, but that is nothing new on either front these days.

Monday, my mom visited and found Mam-ma sitting in the dining hall, listening to gospel music by a couple from our community who come regularly to sing for the residents.  Mom said Mam-ma was doing well... singing the hymns along with the others, and apparently pain-free.  She was dressed in one of her new house dresses - a sleeveless number the aide had put on OVER her cardigan sweater!  Mom questioned the aides about how long Mam-ma had been up, and several rushed to her side right away to assure her that they were not letting my grandmother get overly tired... that she wanted to be up and out.

One aide in particular - one of my favorites - told Mom that Mam-ma had insisted on getting up and out one day the week before, and this aide had taken her to the garden to survey the peppers, squash and tomatoes growing there.  She said the planned to take her again that day, but Mom told her she thought Mam-ma had had enough activity.  She had been to breakfast, lunch, and now the singing.

I really don't know if Mam-ma went to the garden or not, but the next morning when I arrived, she had done a total 180-degree turn.  She was curled up in a fetal position in bed, moaning... and both she and her aides told me she had serious diarrhea and had required a shower just to get her cleaned up well.  The aides appeared in Mam-ma's room to tell me about Mam-ma's morning. One of them confessed that he did not know how the sleeveless dress worked - over or under the sweater. I told him under, and he apologized, despite my insistence it was okay. He began to tell me how he worked hard to smooth Mam-ma's frizzy bed-hair before taking her out of the room... and he asked if I would bring some mousse, so that he could do a better job.

I was touched by his care and concern... and later, the nurse told me that this particular aide goes to great lengths to make sure Mam-ma is presentable each day before taking her to meals.The Hospice social worker had requested a visit with me, so when she arrived, we moved outside on the porch to visit.  It was an unseasonably nice summer morning, so we sat in rocking chairs and talked about my grandmother and her care.

The social worker talked to me about moving Mam-ma to a skilled care nursing facility across the street from the ALF.  I quickly said "No!"  This has been the suggestion of several ... and I did back-pedal enough to allow the social worker to outline her reasons for this suggestion. At the forefront was, "I can tell from your conversation - and from what the nurses have told me - that you are frustrated... that you feel some of the ALF staff are not listening to you and your wishes.  You deserve to be heard."  I listened to all she had to say, and then I told her that I felt that a move at this point would be disruptive and upsetting to Mam-ma.

My mom and I had talked on Monday after her visit to the ALF.  Mom said... and I agree... "Your Mam-ma is driving them crazy.  She will not stay in bed or in her room, and they don't know what else to do except get her up and take her out for a while."  My sister confirmed that - at least on weekend nights when she is working - Mam-ma "sits" on her buzzer continually.  The "favorite" aide told Mom that whenever anyone passes Mam-ma's room, she hollers for them.  I have experienced this myself... if Mam-ma senses movement past her open door, she yells, "Hey!" until someone comes to see what she wants.  Often, she can't tell them when they arrive.  I know... it's frustrating for everyone!

So I told the Hospice social worker that I would reserve the option to change my mind, but for now, I am just riding this pony!  I fully expect that there will be a "Next Big Thing"... Mam-ma will try to get out of bed - or stand and fall... she will develop another skin tear, pressure wound, or infection like the UTI... or her overall decline will catch up with her as she eats less and less and continues to have diarrhea almost daily.  When the "Next Big Thing" happens, we will deal with it.  I know the administrator at the skilled care facility, and if it should become apparent that Mam-ma needs to move, I will

I also told the Hospice social worker that *I* have to own the frustration... that a lot of it is on me.  I have to learn to let some of this go and move forward.  These staff members dearly love my grandmother.  They are doing what they feel is best for her, based on their daily relationship with her, my input, and my grandmother's requests and demands.  I have to trust God to take care of these situations... and to give me the strength and capacity to handle whatever happens next.  After all, something will happen eventually.  My grandmother will not live forever, and something has to facilitate her demise at some point.  And the entire family - and Mam-ma - are all okay with this!

So we agreed to let this go for the moment... to try to relax and take deep breaths... and wait for "The Next Big Thing."  I don't know if Mam-ma overdid it on Monday and the result was her diarrhea and inability to get out of bed the next day - or if it was just "one of those days."  But on Wednesday and every subsequent day this week, she was up, dressed, going to meals, and she appeared to be pain-free.  Maybe the antibiotics and the new time-released medicine are working.  Maybe she just had a string of good days.  Maybe she will actually rally for a few weeks/months - and even try to walk again.  I really cannot say, and it doesn't matter.  We are taking this one day at a time... until the "Next Big Thing."

As part of my attempt to chill out and not over-manage things, I stayed home a couple of days this week and did not visit the ALF.  I sewed... made darling dresses and shorts for some little friends... I worked out, wrote, and read.  My husband and I actually went out of town to attend the wedding of our dear friends' daughter.  And the sky did not fall!  I took the outfits I had made to show Mam-ma one day - and she smiled a GREAT BIG smile and gave me several "I tell you whats!"  A week earlier I had taken sewing, and she looked at it blankly and didn't respond.  So I count this as a good week...and I will take it!

As I have said before, I'm learning to find God's goodness, grace and mercy in the little ordinary things of the day... like time to work out, a few hours to sew or write... and time spent with my husband.  In truth, these are not little ordinary things at all, but rather, wonderful gifts we take for granted.  I know one thing is for certain... in all of this "Sandwich journey," I have received far bigger lessons than anyone... and I'm still learning!

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