Friday, May 25, 2012

When Your "A** Is in a Crack," Does it Help to Say You're Sorry?

Last weekend was rough.  Mam-ma spent much of it curled in a fetal position, gripping her bed rail and groaning with pain.  Friday and Saturday were the worst. She would begin moaning and begging for a pain pill an hour or more before one could be administered... and then it took another hour or more afterward for the pill to take effect.  I asked if anything could be done, and the nurse did try to contact the doctor.  But he was out of town for the weekend and did not answer his cell phone.  I later learned that in these situations, I can call Hospice, and they can help.  However, Sunday was almost totally different.  The pain seemed to be far less substantial, and Mam-ma seemed clearer.  Where she had been virtually unresponsive (except for the groaning) on Friday and Saturday, she was pleasant and clearly more comfortable on Sunday.  Saturday, she flatly refused a bath when the Hospice aide visited.  Sunday, she readily agreed to the same offer from the same aide.  Every day is different.

Monday afternoon when I visited, the aides told me, "She threw a huge FIT this morning... told us that 'I can make my own decisions, and I want out of here.'"  The aides interrupted an administrative staff meeting because the rant was so bad, and the facility administrator, the facility owner, and the nurse agreed to let the aides put Mam-ma in her wheelchair and roll her around - and they even took her outside on the porch for about 10 minutes.  I was not thrilled by this.  It wasn't that this really hurt anything, but Mam-ma is not thinking clearly, and just because she says she can make her own decisions doesn't mean she can.  This weekday nurse was not on duty over the weekend.  She and the weekday aides did not see how Mam-ma writhed in pain.  They did not hear her groaning through the night and begging for more medication.  They were not there when she was virtually unresponsive...and other family members and I were wondering if perhaps this was "the beginning of the end."

To make matters worse, the aides no sooner got Mam-ma back to her room from the wheelchair ride than she developed serious diarrhea... to the extent that she soiled her clothing, the recliner, the floor... everywhere.  The aides cleaned Mam-ma and put her to bed, admonishing me to watch where I sat or stepped ... that "we'll be back to steam clean everything and disinfect."  The Hospice nurse was there, and I noticed that Mam-ma's feet were still dirty, so the nurse put on gloves and got a packet of wipes and cleaned Mam-ma's feet and legs. 


The aides said a "bug" was going around the ALF, but they were also concerned that the wheelchair ride might have contributed to Mam-ma's diarrhea.  I hinted strongly that I would prefer there be no more wheelchair rides!  Before I left, I read a couple of Psalms to Mam-ma.  It occurred to me that she never gets to hear scripture any more... and she has always spent a lot of time reading her Bible.  However, while I read, she closed her eyes and I could not tell if she was even awake.  After I finished, she didn't say a word.

I guess I made more of an impression on Mam-ma about the wheelchair ride than I realized, because Monday evening around 6:00, the phone rang... and Mam-ma's number popped up on my Caller ID.  I answered, and her aide - also named Debbie - said, "Miss Polly wanted me to call you - she wants to talk to you."  Okay... I thought... this should be interesting... and I was right!
Mam-ma was actually fairly coherent, and she said, "I'm so sorry."  I asked why she was sorry, and she said, "Well... I really got my ass in a crack."  I asked, "Are you talking about the ride you took in the wheelchair?"  "Yes," she replied.  I told her not to apologize... it's over and done... but I outlined WHY we didn't want her riding in the wheelchair... and reminded her of how sick she had been over the weekend.  "We just don't want you to start hurting like that again... and every time they move you for anything, you seem to have pain."  "Well," she continued, "I'm sorry." 

I went so far as to tell Mam-ma, "You know, we have signed papers saying that we are NOT going back to the hospital!  So if you fall and hurt yourself, you will have to lie in bed in pain, and I won't be able to do anything but watch you hurt."  She said she didn't know that.  Now she does!  Anyway, she ended the conversation by saying, "I needed to apologize.  I'm sorry."  I had to laugh... even in her "in-and-out" condition, she still can do the old "pull-a-stunt-and-be-sorry-later" routine!

Tuesday was uneventful, and I made plans to stay home on Wednesday and sew for Timothy and Zola.  I was trying to get a package ready to mail to them, and I wanted to include some new clothes I was making.  Late in the afternoon, I got a call from the nurse.  She was filing a report that Mam-ma had tried to get up out of her recliner and nearly pulled it over on her.  The nurse said, "This happened while I was at lunch, and the administrator and an aide got Polly up and left me a note about it."  Mam-ma was not hurt.  I asked if she was scared, and the nurse said, "She was more mad and frustrated."  I thanked her for calling me.


By 6:30, a friend of my grandmothers was calling.  "Jerome (another friend who is a resident) told me that Polly wanted to see me," she said, "so I went to her room, and she said, 'Call Debbie.  I've never hurt as bad as I'm hurting now.'"  I told Bessie that I knew about the fall in the afternoon - I had received a call.  I debated whether to go to the ALF, but after finishing dinner and taking a shower, I threw on some clothes and drove down.  It was about 7:30 when I arrived, and Mam-ma was asleep.  I laid my car keys on her little bedside table, and she roused.  I asked, "What are you doing?" and she said, "WELL!  I'm trying to get these bowels to move!"  She said the nurse had given her a dose of Miralax.  She was complaining of pain and discomfort and said, "They won't do anything." However, a few minutes earlier she had been sound asleep!

I asked about the "fall," and she said, "Yes... I thought I could get up."  I told her, "Mam-ma you have not put any weight on either foot since you had surgery almost a month ago.  You are not able to walk!"  She said, "Well... I forgot."  And maybe she did.  However, that raised a huge concern about her getting up out of her chair... or falling out of the wheelchair.  And twice last weekend, the nurse and my sister (who is a weekend nighttime aide there) found Mam-ma in bed with both legs between the bed rails... trying to get out!

Two aides came into the room, and we all reminded Mam-ma that two days earlier she had been sick with diarrhea... and she had eaten very little since then.  She probably did not need to worry about her bowels... and she did not need more Miralax.  I told her I didn't know what else the staff could do for her... that she needed to try to sleep and rest.  The aides assured her that they would return soon with night-time medication and another pain pill.  I left... there was nothing more I could do, and my husband was waiting at home to watch a movie we had rented.

I set in on Thursday to pursue options for keeping Mam-ma safe... and to avoid another fall.  When I arrived, she was sitting in her recliner... and the foot rest was closed.  She could have easily leaned forward and fallen out.  I don't think she had been that way very long, because as I began to question her and the aides, I determined that a Hospice aide had just been there to bathe her.  This aide had not only left the foot rest down... she had also put Mam-ma's little pink house shoes on her feet - leaving the protective "boots" to help prevent pressure wounds in Mam-ma's bed underneath the bed sheet!  The nurse came in and switched the house shoes for the boots... and I hid the house shoes in the closet!

I called the Hospice nurse who is our caseworker and complained to her... and ultimately, I asked that this aide not be assigned to Mam-ma any more.  I hated to do that, but I have to consider Mam-ma's safety and well-being.  The nurse wholeheartedly agreed, and she filed an incident report on my behalf.  The more I have thought about it, the more I am certain this was the right thing to do - for Mam-ma and for other patients who might have similar experiences.  This is not the time to always "play nice."  Too much is at stake!

So after talking with the facility administrator, who in turn consulted the facility owner, I learned that physical restraints are 100% NOT allowed in the assisted living facility.  When my maternal grandmother was in the nursing home, she wore a "vest" that tied her to the wheelchair.  It kept her from falling out - or getting up - until she took her little sewing kit scissors and politely cut the straps! This type of device is not allowed for Mam-ma Polly.  So I asked the administrator... "What do you suggest we do to keep Polly safe?  I've run out of ideas." 

The administrator said that she and the facility owner both felt that Mam-ma is going stir crazy in her room.  "She needs to get out in her wheelchair... maybe sit on the porch outside."  I don't feel comfortable allowing Mam-ma to go outside.  I am afraid that she will be left unattended there, and who knows what might happen.  So I conceded... "Okay... what if we agree to take her to the dining room to her table for LUNCH ONLY.  I know she might be the last one fed... after her friends have eaten and left the table... but at least she can visit with them and have some time out of her room.  Other than that and being up for a bath, she should spend the rest of the day in her bed.  If she absolutely insists, perhaps you can get her up in the recliner for a few minutes... but hopefully the trip out for lunch will be sufficient."  The administrator felt this was a good compromise. 

I am assuming that this started today.  I did not go... I stayed home and cleaned our house.  The Hospice social worker advised me earlier this week that I should not feel as if I have to visit Mam-ma every single day.  "That's why you have us and the facility looking after her," she reminded me.  My mother did stop in this afternoon, and she said Mam-ma could not stay awake to visit with her... and Mam-ma did not know what she ate for lunch.  My guess is that the trip out to the dining room for lunch wore her out, and as I hoped, she napped most of the afternoon.  I am hoping that the daily bath and lunch trip will be enough to satisfy her - and tire her sufficiently - so that she naps in between and stays safely tucked into her bed.  The bed adjusts to a sitting position... and she is turned every two hours... so this should be enough stimulation to prevent further pressure wounds - the continual justification for Polly being "up and about."

Every time that my grandmother does something like demand to get up and out... or to call me on the telephone... the aides say, "Oh, Polly's coming back!"  I don't see it.  She still sleeps a LOT.  Most days she might make a couple of lucid comments... then the rest is one or two words - or gibberish. The Hospice social worker called her comments "social pleasantries" - answers like "I'm fine," and "Hello," and "Thank you" - simple answers to general questions.  Anything more complicated most often gets a confused answer - if that.  As Mam-ma takes less pain medication, and we get farther from the surgery date and the anaesthesia, she has more lucid thoughts... hence, the phone call and the "ass in a crack" comment that is so classically "Mam-ma Polly."  But she was not putting many sentences together before she fell and broke her leg... so any hopes that she will do so now are not reasonable, in my opinion.

I am still hopeful that things will smooth out somewhat... that for a while, at least, I truly will not feel I have to pop in every single day.  I want to learn from the experience with my maternal grandparents.  I don't want this to make me completely neurotic and disrupt my relationships with my husband and other family members and friends.  I want to keep this all in perspective and not micro-manage - OR compromise my own physical, mental, and emotional health.  I don't think Mam-ma would truly want that, either. 

Last night Greg and I went to dinner with one of Greg's best friends from high school, and his wife, who also went to school with us.  We had a great time reminiscing and catching up... and it was great to think about other things and other people for a few hours.  My grandmother's name came up, because someone stopped by the table and asked about her.  Both of our friends rode the school bus when she was driving... and we marvelled that she is almost 100 years old.  But we did not discuss her fall or her subsequent decline.  We didn't need to... I didn't need to talk about it!  And that felt great!

I have to admit... I was not really upset about the phone call Monday night.  In fact, I was somewhat amused.  For just a moment, I got a glimpse of the "Old Polly," and it actually felt pretty good.  I knew it was a manipulative ploy... whether she realizes it now or not... but at the same time, her colorful language and the clarity of her voice was a welcome treat.  I'm looking for blessings and positive notes in the most unusual and extraordinary places and events... and sometimes I'm finding them!  Saying "I'm sorry" didn't fix a thing... but the phone call was still a little treat... and I'll take it!

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