Are We Really Having This Conversation Again?

I did not realize it had been so long since my last post.  Somewhere in there, I had a birthday, and I guess "old age and senility" have set in!  Either that or there really was nothing newsworthy the last two weeks! Well, you know THAT's not true!*lol*

My 86-year-old mother-in-law got sick around the first of July - vomiting, chills, diarrhea, dizziness, and extreme fatigue. By July 4th, she had a sore throat and was somewhat disoriented.  No one in her circle of friends and acquaintances was sick.  We knew of no "bugs" circulating.  One of our friends had posted on Facebook about her husband's recent bout with Rocky Mountain Spotted Fever.  So I asked Greg, "Do you suppose your mom could have tick fever?"  He looked surprised and replied, "Could be... she had a tick on the back of her leg a week or so ago, and we talked about how to remove it."  (FYI... cover the tick in Vaseline and let it "sit" for about 5 minutes, then wipe away with a cotton ball.  The tick smothers and releases its grip... and you get the entire tick - head and all!)  Greg's mother is as active as any 70-year-old and loves to putter in her yard.  She also dog-sits for about a dozen people, so it is no surprise she has been exposed to both ticks and mosquitoes!

So July 6th, I phoned the doctor's office and told a nurse that we thought Grandma E had tick fever.  She said it sounded so... bring her in that morning.  My husband took his mother for the appointment, and blood was drawn.  The doctor immediately started her on antibiotics for suspected Ehrlichiosis (another form of tick fever) and/or West Nile Virus (she had been bitten by mosquitoes in her back yard, also).  The results of the blood work are still not back, but my mother-in-law is feeling better.  The antibiotic side effects included... get this... nausea, diarrhea, vomiting and more... so she had an anti-nausea medication to take with each dose of the Doxycycline!  If you aren't sick enough already, the medicine will fix that!

In the middle of all of this, my mother had cataract surgery on July 5th.  Thank goodness, the biggest thing that occurred with Mam-ma was that her UTI returned and she was put on yet another round of antibiotics.  That was all... until last Sunday!

I visited my grandmother around 2:00 p.m., and she was napping.  However, when I rattled my car keys, she roused and immediately began to reach for me and moan... "OH!  OH!  OH!"  I asked how she was, and she said, "I don't feel good."  "Where do you feel bad?" I asked.  "ALL OVER!" she replied.  She moaned almost continually the entire time I was there.  Aides came in and tried to comfort her... and one aide said, "She was wanting us to call you and see when you were coming... she's been asking for you."  I had only stayed away two days.

We had gotten rain, and some of the aides said, "All of the residents are hurting - the 'front' has caused their arthritis to be worse."  But this was not what I saw with Mam-ma.  In fact, she showed no visible signs of hurting, save the hollering.  Her brow was totally smooth and un-furrowed.  She showed no signs of distress in her face.  She just tossed and turned anxiously and would not stop hollering.

My other clue that this was not a reaction to pain was when I held up some toddler dresses I had made and said, "Well, I brought some sewing to show you, but apparently you don't feel like looking at it."  Mam-ma sat upright in bed and said, "Oh yes I do!"  She fingered each piece and made little "oohs" and "ahhs".  And as soon as I put them away, she started hollering again.

When one of the aides or I would ask what Mam-ma needed, she would say, "Nothing."  But she would NOT stop hollering.  I finally told her, "You are going to keep that up, and the aides are going to decide you don't need anything... then when you DO need them, they are not going to come see about you as quickly.  You have got to stop that hollering."  She replied, "Okay."  And the next breath included, "OH!  OH!  OH!

I left feeling so frustrated and defeated.  I didn't know how to stop this.  The nurse and the aides (including my sister) told me that Mam-ma practically SITS on her assist button, and when they go to answer the call, she doesn't need anything.  And if she sees an aide or nurse pass her doorway, she calls out to them by name.  My sister started closing the door far enough that Mam-ma could not see who was passing.  Mam-ma told her plainly, "LEAVE THAT DOOR OPEN!"

Tuesday morning, I met the Hospice social worker at Southridge.  She reminded me that I must take care of myself... that Mam-ma is not the only one at the facility who hollers - not by a long shot!  We talked about how Mam-ma is physically improving... can put weight on both legs, transfer from chair to chair with help, and even pedal herself somewhat in the wheelchair.  But she doesn't have the cognitive reasoning to go with this, so she has no clue she can't do these things by herself.

As the social worker and I returned to Mam-ma's room, an aide stopped me and asked if I could ask for some "pull-ups" for Mam-ma to wear during the daytime instead of adult diapers.  They will be so much easier, she explained.  I looked at the social worker, and she said, "All Hospice provides are those diapers with the tape tabs."  I told the aide I would ask if the ALF would provide the pull-ups.  I knew that before we went on Hospice Care, the ALF provided one case of Depends per month.

Since Medicaid pays Hospice for the diapers and/or Depends, they will not pay for both.  So I returned to the aide and told her - and other aides standing nearby - that Hospice only provides for the diapers, so we would use those.  She flatly looked at me and asked, "Can't you go to Wal-Mart and buy pull-ups?"  I told her I could... but I'm not going to.  I cannot afford to pay for something that is already being provided.  She looked at me as if I was the Wicked Witch of the West, and said, "Well, I just asked because Polly is complaining that the diaper tape is uncomfortable.  I just wanted to make it better for her."  Now I was the uncaring caregiver!

I told her I could buy pull-ups, but I was not going to at this point. Polly is on a fixed budget, and between her room and board and her pharmacy bill, she barely has a dime left each month.  I was secretly thinking, "my reasons are really none of your business... you have no idea what my out-of-pocket expenses are already."  But I held my tongue and walked away, feeling as if the girls were talking about me like a hot wind on my neck!

I left the ALF still feeling frustrated at how lonely and needy my grandmother was... and how helpless I am to address her needs. I know she has feelings... and I want to honor those as best I can.  I saw the administrator on the way out and told her about the "pull-ups" incident, and she shook her head and said, "Don't worry about it.  Actually, I think those adult diapers are probably better for everyone."  I thanked her for the encouragement and drove away.  I vowed to stay away and do something for myself... some "textile therapy" was in order!  And sew I did - for the next two days!

Meanwhile, my mom visited on Wednesday, and while she was there, Mam-ma was really sick with diarrhea.  She had to be changed - and practically bathed from head to toe - twice.  The aide asked Mom about pull-ups.  Mom told her we were not having that discussion again.  She and I both discussed later how pull-ups would have made a bad situation even worse in this case.  At least the diapers un-tape and remove without having to slide down the legs!  You fill in the gaps in your imagination on this one!

On Friday, I attended the funeral of an elderly friend, did our grocery shopping and some other errands, and then I braced myself and headed to Southridge.  Mam-ma was sitting in her recliner... dozing.  She roused when I entered the room, and we visited a few minutes.  We were having a beautiful, sunny afternoon - with unseasonably clear blue skies filled with fluffy white clouds.  And it was not terribly hot nor humid, like it has been.  Mam-ma said she would like to go outside and sit on the porch.  So I called her aide to come and help Mam-ma to the bathroom and put her in her wheelchair.  Then we went to the porch and sat.

Another resident joined us... until her son arrived for a visit.  As they walked back inside the facility, Mam-ma said, "I tell you what... I think it's wonderful when people come to visit these people down here."  Apparently I was invisible!  We sat nearly 40 minutes, until I noticed Mam-ma dozing.  I asked if she was tired and would like to return to her room.  She said she would.  So we sent back to the room, where the aide appeared and said, "That's twice she's been out on the porch today."  She was not sure if Mam-ma had help getting out to the front porch Friday morning - or if she had peddled herself.  "You know, she can punch the button to open the door and take herself!" she told me.

Then she started asking again about pull-ups... or so I thought.  I flatly told her, "We are not having this conversation again."  She nicely said, "Oh... well, okay... I was just going to say that these diapers are too small."  I apologized profusely... someone had brought a package of the wrong sized diapers, and indeed, they were too small.  I called Hospice and asked for a package of Medium-sized diapers.  Before I left the facility, a Hospice aide arrived... with a package of LARGE diapers!  The aides laughed and said they would "make do" over the weekend, since the Hospice office was now closed.

So I told Mam-ma I was leaving, and she said, "You're not gonna stay?"  No, I had been there nearly 2 hours, and I needed to go home and make dinner.  "Well," she said, "I sure would like a Coke!"  So I got a can of Coke from her refrigerator and put a straw in it."  Then I told her I was leaving, but I would be back.  She said, "Well, don't stay away too long!"  "I never do," I told her.

Sunday, I visited again, and I took more sewing.  Mam-ma was in her recliner, and she looked neat, clean, and alert. Her first words to me were, "Why can't I have pull-ups?"  I sat down on her bed and told her, "Because you can't afford them."  I knew that one of Mam-ma's biggest concerns is that nobody be out any money for her... and I figured this would be the best answer.  I continued... "Hospice provides the diapers and the pads."  We have to pay for pull-ups - Hospice doesn't have them.  I added it up, and you would use about $120 in pull-ups a month.  And that's just too much.  I'm sorry."  She nodded in agreement, and I thought we were done with that.

I had brought more sewing to share, and Mam-ma enjoyed looking at the toddler outfits I had made for Timothy and Zola.  And then yet another aide came in to check on her, and she sat down in the floor and said, "I want to talk to you about pull-up for Ms. Polly."  I told her, "We are just not going to discuss this again... Hospice does not provide them, and she does not have the money to purchase them herself... it's too expensive."  I explained that I am not being mean... I really feel the diapers are best.  I told this aide about the diarrhea incidents on Wednesday and asked, "Do you really want her wearing a pull-up when that happens?"  This seems to happen about once a week... mainly because Mam-ma insists on Miralax several times a week.  She is of the opinion she needs to "go" at least once - maybe more times - per day!

I told the aide I had "put the pencil to it," and pull-ups would cost about $120 per month. She said, "You can buy a package of 20 at Dollar General for $6-8."  I told her that I might look into that, but I still thought it would be too expensive.  She replied, "I don't mean to be mean or anything, but if it's okay with you, I would like to buy Ms. Polly some pull-ups."  I told her, "It is NOT okay with me... I don't want you spending any of your money on Ms. Polly.  If any pull-ups are purchased, I will buy them.  But 20 pull-ups will not go very far.  Even if she uses 3 or 4 a day, that won't last a week."  The aide said, "But she probably won't use one pull-up a day!  If the aides take Ms. Polly to the bathroom frequently, she is not having any accidents all day long."  She was insistent about this... that Mam-ma was improving and only had problems at night - and she could still wear the diapers for this.

So I asked, "If this is true... then why can't we put down the pads provided by Hospice in Mam-ma's wheelchair and recliner, and put her in her own panties during the day?  If they get wet, you change them and toss them in the laundry."  The aide thought that would work.  She asked Mam-ma, "Would you like me to take you to the bathroom now and then change you into your own underwear?"  Mam-ma said she would like that.  So while the aide helped Mam-ma to the bathroom, I put pads everywhere she sits during the daytime and made notes for the wall saying, "Polly wears her panties during the daytime and diapers at night.  Please be sure she has pads in her chairs."

The nurse came in, and we explained what we were doing, and she said, "I'm sure that her own panties feel much more comfortable than even a pull-up!"  I reminded them both that this will not be fun when Mam-ma has diarrhea... and it may not work if she starts having accidents.  But they wanted to try... and so did Mam-ma.  So hopefully there will be no more discussion about me purchasing pull-ups!  However, the aide and nurse no sooner left the room than Mam-ma asked, "How much is this gonna cost us?"  I shook my head.  "Mam-ma... the panties are YOURS!  Hospice provides the pads you are sitting on.  It won't cost us a dime!"  I don't know if she believed me or not.

I sat a little while longer and made my "goodbyes."  I left feeling like Mam-ma was better for the moment - certainly far better than the previous Sunday - but a few "good" days do not give me a false sense of hope.  I also left feeling like the staff thinks I do not care about my grandmother because I was unwilling to purchase pull-ups for her.  They have changed from "it's easier to help her to the bathroom with a pull-up" to "it's more comfortable... Polly says the tape bothers her."  The problem with this is that they do not cinch the tape tightly, like you would do for a baby diaper.  Polly complains about them being to snug.  So I am sure the diapers shift around throughout the day and do not feel comfortable.  Hopefully the panties and pads will work... and save all of us some grief!

I am refusing to own this judgment by my grandmothers' staff.  As the Hospice social worker pointed out to me... they do not know our history.  They don't know Mam-ma Polly like I do... the antics she is capable of instigating... and how much I do for her - how much I love her.  They are judging this situation unfairly, based solely on what Mam-ma "tells" them and what little they observe.  And I am not angry at them... I'm just a tad weary these days... and I guess a little "battle-worn!"  It's nothing a day or two of "textile therapy" can't fix... and some new pictures of my babies.

I will return to the ALF in a few days and see how things are going.  Hopefully, we will not visit this "pull-ups" conversation again.  I figure something new will take its place soon enough... and the adventures will continue!

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!

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.)