Thursday, June 28, 2012

What Do Old People Talk About?

Someone was talking to me recently about visiting a nursing home resident, and she said, "I don't want to go... I don't have anything to say."  The resident was much like my grandmother... expressive aphasia, meaning she can say very little beyond the "social niceties" of "Hello," "How are you?" "I'm fine," etc.  Lately Mam-ma has gotten out some pretty long sentences and some big words... but on any given day, she opens her mouth to say something, and all she can muster is "I don't know."  OR... the words are not appropriate, as in telling my husband her sweet tea was "precious!"  I think she probably meant "delicious."

So I told this person, "Don't talk TO the resident... talk with someone in front of him.  Carry on a conversation about your previous shared experiences... kids and grandkids... mutual acquaintances, the weather, or whatever comes to mind... and let him listen.  When we do this with my grandmother, she lights up and becomes engaged.  I visit with the other ladies at her dining table, and she listens... and she enjoys that.  She feels as if she is participating without saying anything.

I've not spoken with my friend yet to see if she has visited her nursing home resident, but if she followed my advice, I am quite sure that the visit was positive for both of them.

As for my Mam-ma Polly, she is best described as "up and down."  Friday, I found her in the parlor, having donuts and coffee with several residents.  Ladies from my grandmother's church had come to visit and host a get-together.  Apparently they do this about once a month, which is great!  The ladies from the Sunday school class that hosted mingled with the residents and visited with each one, and I could see that Mam-ma enjoyed this immensely. 

Sunday morning, I went to see Mam-ma, and she wanted to go outside and sit on the porch.  It was already 93 degrees in the shade, so I suggested we go to the dining room. “Would you like to hear me play some hymns?” I asked. “YES!” she said enthusiastically. I positioned her beside the piano in the dining room and began to play some of her favorites. Soon, several residents had joined us, and one lady sang virtually every hymn I played. She sang strongly and knew all the words. I tried to play each hymn through at least twice to give her time to really recognize it and sing along.

As I played the hymns, I considered how some of them remind me of Holy Communion, as they are often played during this service. “Nearer My God to Thee,” “Blessed Be the Tie That Binds,” and “Faith of Our Fathers” come to mind as some of the “Communion hymns” I recall. So I asked my grandmother, “Would you be interested in taking Communion again?” The answer was “Yes!” and I talked with her and a table-mate, who belongs to my church, about receiving Holy Communion.

When I rose to leave, a man at a nearby table motioned for me to come to him. He asked, “If you are going to have Communion, are you going to serve it once a week, like the Bible says?” Another man at his table looked at him, perplexed, and said, “Where does it say that in the Bible?” The first man said he didn’t know the exact verse, but the Bible says that they gathered once a week at the church to “break bread.” “What else could that mean?” he asked. Man #2 and I almost simultaneously replied, “… to share a meal!” Man #1 retorted to us, "Well, you're full of CRAP!"  Needless to say, he was not happy! I wished them a good day and left as the two men continued to argue.  I felt like I might have started a religious World War III!

The Hospice nurse had done a urinalysis on Mam-ma last Friday, and the report was that everything was clear.  By Sunday, her urine looked "milky" - like watered Milk of Magnesia.  So the nurse did another urinalysis, which showed a UTI.  I don't know of the first round of antibiotics did not totally wipe out the infection, or if another one promptly arrived.  Either way, Mam-ma is on another round of antibiotics.  However, she told the nurse she didn't like taking so many pills.  So the nurse talked with Mam-ma's doctor, and he removed virtually everything not absolutely necessary... multi-vitamin, Claritin, fish oil, and more.  I think he cut the number of pills she takes daily by almost half! 

The nurse also discovered that many of Mam-ma's symptoms... confusion, frequent urge to urinate, and more... were side effects of her new pain medication.  Thanks to her research on the Internet and her initiative to pursue this with Mam-ma's doctor, we are now back on a lower, regulated dose of Hydrocodone for pain... and Mam-ma does seem mentally clearer at times.  We have actually had some decent conversations this week - interspersed with some bizarre ones, of course!  Nothing is simple - or consistent - at this age and stage!

So today when I visited, Mam-ma told me she was "fussy!"  And boy, was she ever!  When she saw me talking to the Hospice nurse, she summoned her and said, "I don't want you a tellin' Debbie about me."  The nurse told her, "I was just telling her you are good today... but I also tell her when you are bad!"  Mam-ma didn't say anything else to her!

I'm thankful that we have a Hospice team we know - and who know and love my grandmother so.  They treat her as if she were their own grandmother... and that also means they take no guff!  I'm also grateful for such a loving staff at the ALF.  They, too, treat Mam-ma like a queen.  She is spoiled rotten on a daily basis. 

I hear about trips to the garden to pick fresh vegetables - as evidenced by the tomatoes in her room.  I see how one of her favorite aides, Josh, fusses over her hair each day before taking her to meals.  I've heard her speak of him and the maintenance man, James, as if they were gods!  I actually think they may walk on water! 

I'm also thankful for the occasional moment of clarity that Mam-ma has... the times she lovingly fingers something I've sewn and says, "I tell you what!  I'm so envious!"  Today she asked, "Are you not sewing today?"  I told her no... but I plan to soon, and I will bring new things the next time I come.  She grinned widely.

Mam-ma Polly and Timmy,
sometime in the fall of 2011.
I'm grateful that our little Timothy is with his mom, stepdad, and sister... but golly, we miss him!  I can't believe it's been seven months since we've seen him... and I'm struck by how my world has changed from diapers and wipes, car seats and toys to adult diapers, wipes, rubber gloves and wheelchairs with "lap buddies" to prevent falling overboard.  Things can change in a hurry... and I've learned to roll with the punches.  Maybe next time one of the residents tells me I'm "full of crap," I won't be so totally stunned!

Wednesday, June 20, 2012

We're the Only "Normal" Ones Here...

Mam-ma Polly and my niece
Jasmine (Timothy's mom)
about 1992 - Mam-ma
would have been 80.
Last week, I went to visit Mam-ma Polly one evening just before 5:00 p.m. She was in the dining hall, dressed in a winter sweater - and pants.  In case the full impact of this statement has eluded you, let me remind you that I removed ALL of my grandmothers pants and pajama pants from her apartment (or so I thought) a few weeks ago.  I couldn't get the aides to stop putting pants on her (I felt dressingand undressing in pants would be cumbersome and painful) so I bought a half dozen house dresses for Mam-ma to wear and brought all the pants home with me.

Somehow, I guess I missed three pair of pants in the laundry.  An aide had reorganized the closet and matched these pants up with what blouses she could find (or in this case, a sweater) and dressed Mam-ma in an "outfit."  I explained that we are not wearing pants.  The aide apologized profusely.  The nurse rolled her eyes and said, "You have signs everywhere that say 'NO PANTS!'"  I assured them both that it was okay, and I gathered up the pants and all of Mam-ma's blouses and sweaters and brought them home.  I told my mom and the rest of the family, "Now all she has is her house dresses, some cardigan sweaters and jackets, and her winter coat.  If you go to visit and Mam-ma is dressed in her coat, you will know why!"  It shouldn't be this difficult!

Mam-ma with Timothy (Jasmine's baby)
Thanksgiving 2010
I did not go to the ALF on Tuesday or Wednesday - I was not feeling well.  However, my mom went on Wednesday, and she thought Mam-ma talked well and was doing okay.  On Thursday, I stopped in to see Mam-ma, and she was in bed. Some former neighbors from my childhood stopped by to say "Hello," and she seemed glad to see them.  That afternoon, my grandmother's three cousins in Oklahoma (who are more like nieces), called to say they wanted to drive over for a visit on Friday.  This is at least a four-hour drive for some of them - and one cousin and her husband were coming from Oklahoma City.  They promised to arrive after lunch and only stay about an hour.  They really wanted to do this, and I told them that I felt Mam-ma is as good as she is going to be - so come on over!

Friday, I went to the ALF about 1:30 p.m. to greet the cousins and make sure Mam-ma was doing okay.  They had just arrived.  I had some questions for the facility owner, so I left them visiting with Mam-ma in her apartment.  I ended up spending quite a while with the facility owner.  She was really pushing for Mam-ma to get physical therapy.  She explained to me how much she and the others love my grandmother - and how inspired and impressed they are by Mam-ma's "oomph" to get up and go.

I thanked the owner for being so caring toward Mam-ma... I truly do appreciate how they adore her and spoil her rotten.  But at the same time, I explained that Mam-ma's "oomph" is innate and belies her cognitive abilities.  She appears to be physically capable, to some degree... but mentally, she does not recognize her limitations.  I explained that rehab to get her walking again could possibly set her up for a bad event.  I believe she would not be able to comprehend her limitations... and she would try to do things she cannot and possibly fall and hurt herself badly.

Additionally, rehab would mean leaving Hospice.  This would be considered a "get-well" measure, and Medicare would not pay for rehab for someone on Hospice.  My grandmother is incontinent, she doesn't eat well, and most days, she is not mentally clear.  I feel she needs to remain under Hospice care.

Once we talked through all of this, the owner agreed that I was probably on the right track.  I agreed to keep an open mind.  Should my grandmother show improvement, I would have no problem removing her from Hospice in favor of rehab.  But we are a long way from this... and honestly, I don't think it will ever happen.

The cousins stayed about 2 hours.  I think they had trouble leaving and probably realized they might not get back to Arkansas to see Mam-ma again.  When I visited Mam-ma on Sunday, she did not even mention the cousins' visit.  She was in the dining hall, and I visited with her there while the aide fed her a roast beef lunch.  We returned to her room, and I showed Mam-ma some sewing projects I had brought.  She seemed to understand that I had made the pillows and dresses, and she fingered each one.

For several weeks, Mam-ma has mentioned one of these cousins named Patsy... to me, her aides, and one of the Hospice nurses. She has said more than once, "I want to call Patsy."  I assured her that I was keeping in touch with Patsy, and we all knew that Mam-ma could not talk on the phone well enough to have a conversation with Patsy... so I would do the communicating.  So when Patsy visited and Mam-ma did not even speak her name afterward, I was even more convinced that therapy is a bad idea.  My husband said, "Your grandmother has not said much in months.  Why would you think she would talk about the cousins coming?"  I agreed, but as I told him, I thought she would at least say, "Patsy," or "the girls came," or something about Oklahoma.  But it's like it never happened.  I do not think she remembers it at all... nor do I think she remembers her neighbors visiting on Thursday.

Yesterday, I visited late in the afternoon, and Mam-ma was asleep.  I rattled my car keys, and she roused.  Instantly, she reached for me and was visibly upset.  She said, "They've confined me to my bed, and I don't know why."  I asked if she had been up, and she said, "No!  They've confined me to this bed!"  The nurse overheard this and said, "She's been up a LOT today - she was up for breakfast and lunch, and they just put her back to bed after lunch."  I also knew that the Hospice aide had been there to bathe her during the morning hours - and the Hospice nurse had made a visit.  Mam-ma was mad.  She insisted "I'm confined to this bed, and they won't tell me why!"  "Confined" was the word she used over and again.

Finally, I rang for Mam-ma's aides and asked them to change her and get her up.  By this time, it was about 4:15 p.m.  I said, "We'll just let her sit in her wheelchair for a while and I will push her out to dinner."  I thought getting her up might prove to her she was not confined.  It didn't.  She sat in her wheelchair and said, "I don't understand why they have confined me to bed."  I told her... "Mam-ma!  You are sitting in your wheelchair.  You are NOT confined.  You can get up any time you want and sit in this chair or your recliner."  She looked at me like I was from Mars, and then she said, "Well, since I've been confined to my bed, I've not been able to get my kidneys to work."  She followed this with, "I've got to go to the bathroom!"

I realized Mam-ma was not mentally on the same planet with me, and I was wasting my breath.  After the aides came once again to change her, I wheeled her to the dining room.  We were very early - it was only about 4:30 p.m.  But drinks were already on the table, and I offered Mam-ma coffee, which she declined.  We sat in total silence.  Mam-ma stared blankly at the table.  A few more people entered the dining room.  In one corner sat a woman and her gentleman companion.  There were a few other ladies sitting at various tables throughout the dining room.

At the table nearest us, a lady sat sorting silverware.  She seemed to be in the throes of dementia as she unrolled the silverware at each place setting and combined them, then rolled them again in a napkin, saying, "It's just one thing after another."  At one point, she looked toward Mam-ma and me and said, "How can you kill someone if he's already dead?"  We did not respond, of course!

Then I heard the lady sitting with her gentleman friend say, "Look! These people are all crazy.  That one is rolling silverware.  That one is doing what she should... so is that one... and that one (gesturing toward me) is just sitting there staring at her mother!  We're the only normal ones here!  I think we should leave!"  It was all I could do to keep a straight face.  My worst "fears" have been confirmed... I am no longer "normal!"  At least it added a little levity to an otherwise depressing visit!

I found out later that when the Hospice nurse had visited yesterday morning, she found Mam-ma curled in a fetal position in her bed, very blank and sad.  Mam-ma cried, and the nurse asked her, "Are you hurting?"  Mam-ma said no, she wasn't hurting.  The nurse asked, "Then what's wrong, Polly?"  Mam-ma replied, "I'm tired."  The nurse was very upset... she loves my grandmother dearly, and as she told me today, "I think she is so tired of this life."  I agree... but we all know we cannot change this.  I'm touched that the nurses care so much.

Today, my mom visited and found Mam-ma a little better.  She was able to visit some - even asked a few questions, like when my niece's next baby is due.  But Mom didn't think she was "great" by any stretch. one point, she said Mam-ma told her, "I prayed and prayed and prayed that I would never be this way."  We think she meant being incontinent and dependent on others to change her and keep her clean and dry.

On a happier note, we talked to Timothy this week, and he sounded great.  He told us all about swimming and Toy Story 3, and his birthday cake.  He also told each of us that "I love you," and that made our day!  And... I was told by my cousin Natalie that her three-year-old, Owen, wants to wear the "Toy Story" shorts I made him every day - she can't keep them laundered enough for him!  Owen and his 8-year-old sister, Olivia, visited us last Tuesday, and I gave him the shorts.  I also gave Olivia a denim skirt I had made for her.  Sewing for them is great therapy and gives me a reason to smile.

So every day is still different... and Mam-ma's decline continues. I have asked my family and friends to pray for peace for my grandmother. I am trusting God's will and His timing... and I know if Mam-ma is still here, there is a reason. But she is truly miserable... I am convinced of this... and it's heartbreaking. I try to do what I can for her when I visit... and not to think about it too much when I leave. I feel like the best thing I can do for her and everyone else at this point is to try to preserve my own sanity, and - despite the assessment of the other ALF resident - maintain as much "normalcy" as possible!  Wish me luck!

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!

Saturday, June 2, 2012

Just How Sick Are You If You're "Sick as HELL"?

This has been yet another interesting week.  Over the weekend, I found Mam-ma Polly dressed once again in pajama pants and her little pink house shoes.  Someone apparently dug them out of my hidey hole in the closet!  Beyond frustrated, I gathered up every single pair of pants and pajama pants and brought them home... along with the pink house shoes.  As I mulled this over, it dawned on me that the facility policy manual states that pajamas and robes are allowed in the dining room for breakfast... but the residents are expected to dress for lunch and dinner.  I fully understand that.

I thought about Mam-ma and her trips to the dining room in her pajamas, covered by a blanket, and I realized that this was not only uncomfortable... it was demeaning.  So Monday morning, I went to Fred's and Wal-Mart and purchased five new house dresses for her.  Since I had removed the pants and pajama bottoms, I labeled her new dresses and grouped them in the closet with matching sweaters and jackets.  I then told the nurse and every aide I saw that I wanted Mam-ma dressed in THESE outfits.  A couple of the aides got pretty excited over the bright colors... and the ease of dressing Mam-ma in something with snaps and zippers.  I showed them where Mam-ma keeps her camisoles in the drawer of her dresser and suggested they put one of those on underneath - for modesty.

Monday was Memorial Day, and James, the maintenance man, grilled burgers and hot dogs for the residents and guests.  So I ate a FEAST with Mam-ma and her friends at her old table.  Over the weekend, I had discovered that the aides were placing Mam-ma at another table in the dining room, so that one aide could help both her and another resident eat at the same time.  This was not great for Mam-ma's socialization, but I realized that she might eat more... and I couldn't count how many people came to the table to speak to her and give her a hug.  So I didn't fuss.  But Monday, we sat with her friends.  And honestly, I realized then that it didn't matter, because Mam-ma only ate because I pretty well fed her... and she did not interact with her friends and me in the least.

Tuesday was not a good day.  Mam-ma became very confused and complained of burning when she urinated... the nurse told me, "I'm pretty sure she has a UTI."  The Hospice nurse came and a urinalysis was done... with positive results.  Mam-ma saw people in the room who were not there, and she was just generally sick all day.  Wednesday, she seemed a little less confused, but I still spent quite a while with her... straightening her room, handling some laundry issues, and consulting with nurses and aides about her care.  She had not gone to the dining room on Tuesday, since she was so sick.  But Wednesday, she told me, "Debbie, I want to go to lunch in the dining room."  So I asked the aides to dress her and take her for lunch, and they did.

My mom visited in the afternoon, and she said she sat by Mam-ma's bed for about 45 minutes and read a book... and Mam-ma slept.  She said occasionally, Mam-ma would wake up a little and say, "I wish I could stay awake."  Once, she raised up and clearly and distinctly spoke a man's name.  Mom said, "Yes, he's the man who wrote 'Singing the Blues,'" to which Mam-ma said, "I don't know."  Now, this man is someone who has been dead since 2004... and my grandmother really did not know him!  Why she spoke his name so clearly is a mystery to us.  Did she see him in the room?  Did someone mention him to her in passing conversation?  We seriously doubt the latter... but we will never know!

Thursday, I did not go to visit Mam-ma, and around 6:30, the phone rang... caller ID showed it was her number.  I answered, and the aide said, "Polly wants to talk to you."  She put Mam-ma on the line, and I asked, "Hi, Mam-ma... what's wrong?"  She said, "Well... I'm sicker than HELL!"  I told her I was sorry, and she said, "I thought I'd drive over, but..." and she trailed off.  Then she started to cry and moan, "Oh... oh... Debbie... well, Sugar, I ..."  Then she said, "Call me sometime."  I told her, "I'll be to see you tomorrow, okay?"  More moaning and crying, and then she mentioned a cousin and a photo.  "Did Carolyn come to see you again?"  "Yes."  "Did she bring a picture and leave it for me?"  "Yes." 

I told Mam-ma SHE might like to have the picture, and Mam-ma said, "No... I want you to get it... I don't want anything to happen to it."  That was her only lucid comment.  Next, she said again, "Call me sometime."  I assured her that I would see her the next day - and that her aides would come soon and give her night-time medicine to help her sleep.  We hung up, and I told Greg, "Mam-ma is sundowning*."

Today, I arrived at the facility a little before 11:00 a.m., and as I entered the building, I heard throat clearing that sounded all too familiar... it was Mam-ma.  I looked around... where on earth could she be?  There she sat, in her wheelchair in the hallway, along with a long line of residents.  It was "rounding" day for the facility doctor... and Mam-ma was in line.  I have no idea how long she had been sitting there, but she was slumped in her wheelchair... her feet dragging the ground.  I went and got a folding chair from her room for myself - and the foot rests for her wheelchair.  I stopped to speak to the duty nurse, who told me that Mam-ma was really sick this morning with diarrhea.
I tried to show Mam-ma some sewing I had brought to share with her... she was not interested.  She was tired and weak.  The facility owner (who is also a nurse and was attending the doctor during his rounds today), came out between patients and assessed the group.  I waved to her, and she said, "Polly is next."  Sure enough, we were next in line to see the doctor.  I thought the doctor did a thorough job of examining Mam-ma.  He was gentle and kind and extremely attentive... and also assertive.  He spent a long time on his hands and knees looking at Mam-ma's pressure wound on her heel... even measured it.  The nurse asked if it should be debreded... he emphatically said no... that it should be left alone, and if it needed any treatment in the future, he would handle it personally.

The doctor also explained to me that we can expect more skin breakdown as things progress, along with the possibility of more UTIs and even pneumonia.  Even though an antibiotic was begun earlier in the week for the UTI, he prescribed 10 days of a different antibiotic, based on her lab cultures.  He also changed her to a time-release pain medication that should stay in her system all the time and prevent these hours of pain in between pills that she has experienced.

The attending nurse asked the doctor about getting Polly up and out more... did he want her more mobile?  He said that getting out of bed for a short time would help with pain, skin breakdown, and even possibly the sundowning.  The nurse said, "So we want to get her up 3 times a day - for meals?"  I mentioned that we are getting Mam-ma up for lunch now, and the doctor said, "Lunch is a good start... and then if she builds up to it, she could add breakfast or dinner."  The doctor and nurse finally agreed to write orders to get her up "as tolerated."

I questioned the nurse... "This means meals only... right?  You won't have her out playing BINGO and going to activities, will you?"  She looked at me and said, "Listen, Polly pretty well rules the roost around here, and when she says she wants to do something, she's gonna do it! "  I reminded her that lately, Polly says one thing one minute... and the next minute she is asleep!  Her "yes" is "no" and vice versa.  She replied, "Yes, well, they're all that way."  I reiterated that I did not want Mam-ma to be up and out so much that she is in pain.  The nurse assured me that "We're not going to leave her sitting somewhere slumped over asleep and go off and leave her unattended."   And I don't think they would... intentionally.  But I know how busy the aides are... and things happen... and I'm just looking out for my grandmother.

The doctor kept reiterating that our goal here is to keep Mam-ma comfortable. The nurse also asked about physical therapy.  More to the point, she asked him, "When can Polly start bearing weight on her feet?"  I reminded them that she has not put ANY weight on either foot since she fell... and the doctors in the hospital told me she would most likely never walk again.  The doctor concurred... but he said that some gentle physical therapy could help with stiffness and pain and overall well being.  The nurse said, "I've already talked to PT... she's at the top of my list!"  I later learned that there is a good chance that Medicare will not cover physical therapy, since my grandmother is on Hospice... and the doctor did not mention it in his orders.

The visit concluded, and an aide came to whisk Mam-ma to lunch in the dining room.  I had gotten her a hankie from her room, because she had a runny nose.  When I got to the dining room, I noticed the hankie was covered in something... and it looked gross.

I gave Mam-ma some paper napkins and retrieved the hankie and put it in her dirty laundry pile.  Thank goodness her apartment is only a few steps from the dining room - and nurse's station!

When I got back to Mam-ma, her lunch had arrived... spaghetti, broccoli, and garlic bread.  She was eating the bread while her aide fed another resident.  I noticed something on her dress, and as I looked closer, I realized that Mam-ma had spit up all down the front of her clothing.  I told the duty nurse who was standing nearby, and she immediately flew into gear helping pass out lunch plates so that the aide could help me get Mam-ma to her apartment and get her cleaned up and into fresh clothing.  Two aides actually came to do this, and soon we were back in the dining room, and one of the aides was feeding Mam-ma chicken noodle soup.

I gathered Mam-ma's best blanket/throw to toss into my washing machine, and headed home.  While the blanket was in the clothes dryer, ran errands and bought groceries... and more wipes for Mam-ma.  Then I returned to the facility with the clean blanket and wipes.  Mam-ma was sleeping comfortably in her bed.  She roused enough to say, "I feel a little better."  Some very dear lifelong friends popped in to say "Hello," and Mam-ma tried to talk to them, but every sentence was truncated midway as she drifted back to sleep.

I clasped her hand and wrist as I prepared to leave and told her that my sister would be there soon for her weekend night shift... and that I would see her later. I was struck by how thin and frail Mam-ma has become.  I wonder just how much weight she has lost in the last month.  I spoke with the Hospice nurse later, and she was pleased with the doctor's report.  My mom had visited while I was running errands, and she was pleased with how she found Mam-ma.  In fact, a close friend of Mom's who Mam-ma has not seen in probably a decade was with her, and Mam-ma called the friend by name and even asked her about her own sons.  Mom was amazed at that... and the friend was thrilled.

I told the Hospice nurse this afternoon that sometimes I feel like I've been through a battle by the time I get home from the facility.  For the most part, everyone seems to be on board with keeping Mam-ma comfortable and allowing for moderate activity each day.  But some are still hoping for the "old Polly" to emerge... and I just do not see this happening.  And as I pointed out to the doctor and owner/nurse today... "that's not what she wants at this stage."  I also stressed that I am not wanting to tie my grandmother to her bed... nor am I trying to expedite her passing.  But I know her... I know that she wants every minute she is alive to have quality and be comfortable... and so far, we can't say this is always happening.

Let me hasten to add that I am truly pleased with the ALF where Mam-ma resides.  I couldn't ask for a staff to love her more... and cater to her every whim.  This is not about the ALF.  Just yesterday, Mom lunched with two of her oldest friends who both expressed that "Polly should get to do whatever she wants to do."  The first week Mam-ma was back at the facility after her surgery, the other friend said to Mom, "If Polly wants to go to BINGO and other things, I think she should get to... she should do whatever makes her happy."  The trouble is... Polly doesn't always know what she wants or what makes her happy.  She is not thinking clearly... and her answers are often irrational.  It is up to me as her caregiver to discern what is appropriate... and like any good mother, that sometimes means saying "No!"

Mam-ma is tired.  Tuesday, in the stupor of her UTI, she reached out and took my hand and said, "Oh, Debbie... what would you think about me going home?"  I wasn't sure what she meant by "home," so I said, "Well... Mam-ma... you are home... you've lived in this apartment for over a year now."  She shook her head.  I asked where she thought she was, and she said, "I don't know."  I learned that earlier in the day, she had told the administrator she was afraid.  The administrator had found her clenching the bed rail and looking very frightened.  When she asked, "What are you afraid of, Polly?" Mam-ma replied, "I just don't want to go back to the way things was."  Again, the administrator didn't know if she meant the hospital.  I have had more than one person who knows my grandmother say they feel she was trying to tell me once again she is ready to go HOME to Heaven... and I suspect they may be right.

I know this is a long, and probably dull and uninteresting post for some of you.  But for those of you who find yourselves in a similar situation, it may sound all too familiar.  What is the take-away from this?  For me, it was the visit I had with a dear friend this afternoon.  She and her husband cared for his mother in her last years until she died at the age of 101.  She was by then under the care of Hospice, and her grand-daughter was living with her fulltime.  But my friend said, "Remember... this is not forever - for either of you.  It will end... and you both will get relief."  I know this, but I needed to hear it.  "This, too, shall pass"... literally.

Meanwhile, I will keep doing the only thing I know to do... being a "bulldog advocate" for my grandmother and make sure that her wishes are respected.  In her case, she really isn't too old to rule the roost... and I'm doing my best to see that she gets to do exactly that!

*(Sundowning is also known as late-day confusion, often associated with dementia and/or Alzheimer's.)