The More Things Change...

... the more they stay the same!  This thought "came home to roost" with me recently.  After 251 days, we finally got to see our little nephew Timothy again.  His grandparents went to Texas to visit after Timmy's new baby brother, Nathan, arrived.  They brought Timmy home to visit for a couple of weeks, before we return him to Texas.  We were thrilled to see our little guy - and amazed at how he has grown and what all he can do now.

At the same time, I was struck by the similarities between him and my grandmother.  The only difference is the scale.  Timmy is now potty trained.  He uses a little "Thomas the Train" adaptor seat that perches atop the regular toilet seat - much like the "potty chair" apparatus that sits over Mam-ma's toilet and provides her with a higher perch and arm rails.  Timothy still has trouble understanding a few things - and often there is no reasoning with him... just as it is with Mam-ma.

You can tell Timothy to stop doing something, and in his little 3-year-old mind, it doesn't compute.  You can tell Mam-ma to stop hollering or rattling her bed rails, and she just looks at you with a glazed look, then starts to holler and rattle.  Timmy spits out foods he doesn't like... so does Mam-ma.  Timmy frequently asks "Why?"  Mam-ma does, too... as in, "I don't know WHY I can't walk."

We took Timothy to see Mam-ma... I think it confused her, although she seemed happy to see him.  All she could say was, "I tell you what!" and once she said, "He's so cute."  Finally, Timmy raised his hands as if he were confused and said, "TELL ME what, Mam-ma!" She didn't get it.  I suggested that Greg take Timmy to see the fish tank in the dining room, and he did.  Thankfully he was with me... it would have been a real challenge to manage Timmy and Mam-ma by myself!

In the seventeen days that Timothy visited, I saw even more similarities, as Mam-ma expressed herself in 3-year-old fashion. More than once, when she was upset about something, she began to heave her shoulders and "cry" and sob... with nary a tear... a behavior I had seen from Timothy several times.  I wanted to say, "Use your words," as I do with him... but it didn't seem appropriate.  So instead, I would tell her, "That is not helping.  You need to tell me what is wrong." 

Honestly, I don't feel I have been nearly as patient with my grandmother in recent weeks as I should... and maybe that was due in part to the stress of caring for her AND my nephew.  I think moreso, it's the culmination of weeks and months and years of continual stress and "wrinkles" and challenges.  We are all just a tad weary - and none of us more than my grandmother.

I didn't take Timothy back to visit Mam-ma Polly while he was here.  She never asked about him again, and he did not indicate he wanted to return.  They saw each other, we snapped a photo or two, and we can say we've "been there, done that."  If she wakes up someday and says she wishes she could see him, we can remind her that he did visit.

We have returned Timmy to his family in Texas.  Saying "Good-bye" again was heartbreaking for all of us.  I am hoping and praying that it won't be another 250+ days before we see them again.  Meanwhile, I am regrouping, resting a sore knee that wasn't  up to the rigors of a 32-lb. three-year-old who liked to be cuddled and carried.  I am already focusing on the newest development with my grandmother... a speech therapist who has indicated interest in working on the expressive aphasia. If she is willing to do the paperwork to see if Mam-ma qualifies, I am willing to consider this.

So life continues... with all of its similarities - AND changes...and so do we!

I Can Still See "Them Eyes!"

He's here... our newest great-nephew, Nathan Daniel, arrived Friday morning.  All 6 pounds 13 ounces of his 18-inch body are perfect!  He will be a wonderful little brother for Timothy and Zola... and all three children will surely be a challenge for their young mother!  I can't wait to meet him and have some snuggle time - hopefully by the end of this month!

Friday afternoon, I visited Mam-ma Polly at the ALF.  I had not been to see her since the previous Sunday, although I knew that my mom had been there mid-week for a visit, and all reports were that she was doing remarkably well.  Mam-ma was sound asleep when I arrived, so I tip-toed around a while... and honestly, I considered not even waking her.  But I had brought her a picture of Nathan that I printed out all nice and big, and it HAD been a while since my last visit.  So I did a few things in her room until she woke up.  She was THRILLED with the picture and said, "Sit me up."  I did, and then she wanted to GET up and sit in her wheelchair.  The aides, Debbie and Kay, came and helped her, and they oohed and ahhed at the picture.  Dr. Smith was there making rounds, and Mam-ma said he had seen her that morning... and had very little to say.

Dr. Smith passed Mam-ma's apartment doorway and saw us, and he ventured in and told me everything was good, and he didn't change a thing.  He thinks "we are doing very well" and "hanging on..."  He commented about the picture, and I thought everything was great... until I got up to leave. 

I hugged Mam-ma and started to leave her apartment, and she grabbed my arm and began to frown. Then she heaved a big sigh and started to breathe heavily, and she said, "Well, I forgot to tell you..." and she couldn't get it out, and I waited and waited... and finally she said, "Well, them big eyes..."  I said, "Yeah?"  She said, "Oh... them eyes... they just haunt me."  I asked, "Whose eyes?"  She said, "That man!  I woke up and all I could see was them big eyes."  I asked, "You woke up and saw a man's eyes?"  "Yes!"  "When did this happen?"  "A few nights ago."  "Who was it?"  She tried and tried to think of the man's name, but she couldn't.  I asked was it someone she knew?  Yes.  Was it her deacon?  NO!  Was it someone who lived at Southridge?  Yes. 

By this time she was crying - and she even had a few tears in her eyes.  She said, "I was so scared."  I told her, "If that ever happens again, press your button.  Is that what you did the other night?"  She said, "No!"  I asked her what she did, and she said, "Well... I screamed!"  She said an aide came in and sat with her "a right smart while" (one of her favorite sayings).

I assured her that it was okay... and that I would ask around - that no one had mentioned it to me.  I told her "Good-bye," and went to find the aides.  They were unaware of this incident.  The nurse was also unaware.  The administrator had not heard about this and said none of her male residents roam or go into other people's rooms... that they are all "with it" more than that.  We both agreed it could be something Mam-ma cooked up because I was leaving - everything had been fine up to that point.

BUT... when I got back down the hallway, Mam-ma was out at nurse's office, and she was trying to tell Peggy, the nurse, this story.  Kay came along, and sweetly she said, "Oh, you know, lots of the little ladies see men in their rooms.  One lady has a man who comes all the way from Mississippi."  We again assured Mam-ma that no one was coming her room - that the aides and Peggy would keep their eyes open... it would be fine.  She was NOT convinced. 

I  once again said "Good-bye" and left.  I got out in the parking lot and remembered that Mom had told me the other day that the aides thought Mam-ma was confused... and the week-day nurse had ordered a urinalysis, just in case.  So I went back and told Peggy about the UA and the aides thinking Mam-ma was really confused, and maybe that was it... maybe this happened when she took her nap. 

We were talking in the doorway, and I heard Mam-ma's very clear and strong voice from down the hallway... "Debbie!"  I turned around, and she was right at her apartment doorway, and she raised her hand and pointed her finger and said, "Plank*!  His name is Plank!"  Peggy and Debbie said, "Oh... Mr. Plank!  We know him... he wouldn't go in her room."  Mam-ma insisted that he did. 
Then Debbie remembered that when she put Mam-ma down for her nap, she said, "Ms. Polly, you need to get some sleep," and Mam-ma said, "I don't know if I can... I keep seein' them eyes."  Debbie didn't know what she was talking about.  Peggy tried to explain to Mam-ma that dreams could be vivid... she had waked from a dream and thought it was real more than once.  Mam-ma was adamant - and agitated - that this was NOT a dream... Mr. Plank was in her room leaning over her bed - and now it was "night before last." 

So I assured her again that nobody was coming in her room - the aides and Peggy would be watching.  I finally went in her room and coaxed her back inside to drink a Coke.  I put a straw in a can  of Coke and handed it to her and said, "Drink this and look at the picture of the baby, and that will perk you up."  She took a big swig and said, "Well, now I have to go to the bathroom."  I made sure her call button was punched, and I told her "Good-bye" yet again... and left.

So I just don't know... Peggy was insistent that Mr. Plank would never do this... but how would Mam-ma know this man's name?  And yet, I know she was not confused earlier... and why would this happen just as I left?  It's all so convoluted...and disturbing.  I had to think about her so adamantly accusing one of her favorite aides a few weeks ago of bruising her arms. Is this a new "thing" with Mam-ma now... to imagine that people are doing things?  I am so sorry I woke her!

I called my sister and warned her... and I told her I wonder if I need to pursue this more... or if I should let it ride for now.  She said to let it ride... so that's what I will do.  I just felt she needed to know what had transpired before she went in for her night shift as an aide at the ALF.  Hopefully it's over with and Mam-ma will not mention it.  Time will tell.  I really thought Mam-ma was doing so well when I first arrived... but maybe not.  Suzanne did not even seem to know who Mr. Plank is.  It did throw me when I found out he really exists... but as my husband and Peggy both suggested, she probably had a nightmare... and he was in it!

My mother tried to console me by telling me that my maternal grandmother imagined things... she insisted that the nursing home staff where she resided were dressing rats and seating them in the dining room for meals. She was sure of it - she had seen them!  But what threw me the most was how quickly my grandmother spun from being really well and mentally clear to being totally upset and confused.  I seriously wonder if she was having a TIA... and we will never know for sure.  My mom encouraged me to put it out of my mind.  I am trying.

Hopefully it is all forgotten and Mam-ma will not mention it again.  Time will tell. I have seriously dreaded my last few visits.  It seems to always be something... ranging from mildly irritating to downright bizarre.  One thing is for sure... I can't say the visits are ever dull and uneventful... and that is not necessarily a good thing. I am hoping for a calm and peaceful week.  I will print out a couple more pictures of Nathan for Mam-ma to enjoy.  Maybe that will get her mind on something more pleasant - at least for a little while.

*Name has been changed.

All She Needs is a Tin Cup!

I've done some serious "textile therapy" in the last week, so I have only visited my grandmother a couple of times.  My mom has visited a few times, too - and my sister still works 3 weekend nights - so it's not like Mam-ma has not had visits from her family.  When my mom visits, she often reports that Mam-ma "had trouble holding her eyes open," so Mom ends up pulling up a chair and just sitting at her bedside for a while.  I find it interesting that I can go the very next day - or even the same day - and Mam-ma has no trouble staying awake.  I'm wondering if this "pretending to nap or be sleepy" is for Mom's benefit.  Mom thought that Mam-ma was mad at the world the last time she visited, and this was why she closed her eyes and literally shut everyone out!  We'll probably never know for sure.

I found things pretty well on Sunday when I visited.  I took more sewing to show Mam-ma, though she never even raised up in bed.  She looked it all over - twice - and declared, in a rather long sentence for her... "I said to myself, 'She's a havin' the time of her life with this sewing.'"  I heard this several times over the course of ten or 15 minutes.  My husband and I were attending the funeral visitation for a dear friend that evening, so I didn't stay long.  But I thought all was well... until I talked with my sister on Tuesday.

It seems that Mam-ma continues to holler, though she has not done so while I am there in about two weeks.  But at night and much of the daytime, if she is in her bed or recliner, she is hollering for any and every aide who passes her door.  And my sister said when she is on duty, she will hear "Suzaaaaaaaaaaannnnne!"  Worse still, when the aides to not respond as quickly as Mam-ma thinks they should... she has begun to rattle her bed rails!  I told Suzanne that maybe we should get her a tin cup, like you see the prisoners scrape across the bars of a jail cell in the movies.  She replied, "Don't you dare!"  I would never do this, and it's not funny... but I can just see my grandmother.

So on one hand, we feel like maybe she cannot help the fact that she hollers.  But when you know enough to call the aides by name and rattle your bed rails... it's hard to believe you are clueless.

I am assured that there are others who do this sort of thing... and worse.  But they are not my grandmother.  And they don't have a loved one working there.  It's a dilemma... but my sister insists that she wants Mam-ma kept in this facility - that she is managing just fine.  So we remind Ma-mma often that she must not holler... that it doesn't make the aides come any faster or more frequently to check on her.  And I'm waiting for the day the administrator calls to tell me her bedrails have been removed.

My grandmother has come so far in the last two months... farther than I ever dreamed she would when we left the hospital in early May.  Still, she is declining, in many ways.  I am prepared for the possibility that she might continue to improve enough that she no longer qualifies for Hospice care at this time.  But I feel like the far more likely scenario will be that she falls...develops an infection of some sort... or overheats sitting outside on the porch.  Every day is different.  Meanwhile, we all agree that we should keep objects that can be clanged against the bedrails at a hefty distance.  If Mam-ma figures out how to make noise with one of those, we're sunk!

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!

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!

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.  And...at 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!

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!