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!

Sunday, May 20, 2012

Do You Know...My Favorite Dinosaur is Cool? Do You Know Why This Matters?

Last night, we talked to Timothy and his mother for the first time in nearly two long months.  They had spent the day at a nearby lake and botanical gardens/park, and Timothy had LOTS to tell us.  He also had a lot to tell us about his birthday presents - and his dinosaurs... and the repetitive question was a dramatic, "Do you know... that my favorite dinousaur is cool?  I will show it to you!"  Of course, we could not see it on the telephone, but that didn't seem to matter.  And this was all important because????  The 30-minute conversation with our beloved three-year-old was a welcome respite from the focus on my grandmother and her deteriorating condition.

Wednesday and Thursday were remarkably "good" days for Mam-ma Polly.  She was clearer and put more sentences together than she has in months.  She told me about visitors and asked about a mutual friend who is suffering with Bells Palsy.  She said of this person, "I wish I was able to send her a note."   She is still thinking about others - even now.

However, my mom visited on Friday, and nothing was the same.  Mam-ma was virtually unresponsive.  Mom had to keep waking her to talk with her... and even then, she wasn't sure things registered.  And Mam-ma has a pressure wound on her right heel - the leg that is broken.  It's about the size of a quarter, and the Hospice nurse put padded "booties" on her feet to keep them from touching the sheets.  We are told by the nurses that this is the beginning of other problems... like more skin breakdown.  And even worse, Mam-ma is in pain.

We got the doctor to increase her pain medication from 2 times per day as needed to four times per day, as needed.  However, before the six hours is up she is begging and groaning in pain.  When I visited yesterday morning, I found her in a fetal position, clenching the bed rail with both hands, frowning deeply and groaning.  She was in a lot of pain.  We have not been able to reach a doctor this weekend, which I am not sure I understand.  But there are times when the Hydrocodone kicks in that Mam-ma is happy and laughing... it's just that last hour or so before the next pain pill - and then the hour afterward until it takes effect.  When you add them all up, that is a lot of time to be in pain.  Hopefully I can get to the bottom of it tomorrow and get either her dosage strength increased - or the frequency of administering the current amount.  I do not want my grandmother to be in pain at this point.

I know every day is different... and the challenges and frustrations may only increase as we go along.  For all who questioned at the beginning of this week whether Hospice was the right choice, I say, "Go visit her now."  We made the right choice.

At the same time, I am trying to pace myself... and if you are in the same boat - or a similar dinghy - I suggest you do the same.  Last Saturday, my best friend and I attended a party to celebrate the marriage of a mutual friend we have known since childhood.  We laughed, danced, and reminisced... and for a few hours, I didn't think about hospitals, pain, Hospice, or anything sad.  It felt great!  Yesterday, I fired up my sewing machine and made pillows for our front and back porches.  Sewing is my therapy... and I get lost in the beautiful fabrics and calculating yardage and creating something pretty... and I feel happy and peaceful.

In all of these challenges, we have to find balance.  So talking to Timothy last night was the icing on the cake.  Thinking about the carefree world of a three-year-old and his soon-to-be-one-year-old sister made us smile and laugh... something we haven't done often enough lately.  Tonight, if everything holds together, my husband and I plan to veg out on the couch and watch movies... one drama... and one comedy.

This seemingly sudden 180-degree turn with my grandmother should come as no surprise.  I know things can change quickly from here on out... but at the same time, it was a good reminder NOT to be surprised - or to take a "good" day/hour for granted.  I'm still keeping my house in some semblance of order and trying to stay ahead of meals and laundry... and basically keeping my "house" in order (literally and figuratively).  Nothing is certain... of that I am sure.  But I am taking things one day at a time, and relishing in the fact that dinosaurs really are cool... and I know a little boy who can tell me why!

Tuesday, May 15, 2012

Micro-management or Loving Care... How Do You Tell the Difference?

I am sorry it has been so long since my last post. To say that this has been a hectic and stressful week would be an understatement. The hospitalist agreed to keep my grandmother over the weekend so that she could be re-admitted to her apartment at the ALF on Monday and placed in Hospice Care. I met Monday morning with the Hospice director, the ALF administrator and R.N., and the Hospice R.N./Caseworker. We reviewed the care plan for Mam-ma and agreed that she would do only as much as she fel like doing... and that our goal was to keep her happy and comfortable for the rest of her life.

To say the weekend in the hospital was uneventful would be a lie. For starters, I arrived Saturday morning around 9:00, and the aides said, "She didn't eat much breakfast." I immediately knew why as soon as I saw Mam-ma ... she wasn't wearing her dentures! I told the girls... "She doesn't have in her teeth!" They sheepishly disappeared, and the ward clerk scrambled to find something in the nutrition room that we thought Mam-ma would eat. Then she realized the food cart was right beside the nurses' desk, and Mam-ma's virtually untouched tray was still there. She retrieved it and warmed the scrambled eggs and biscuit in the microwave. I fed Mam-ma, and she ate all of her eggs and half a biscuit with jelly - once we put in her teeth, of course!

I think one of the hardest things for me was that Mam-ma did not know me for several days.  She seemed to recognize me, but when I would ask, "What's my name?" she would shake her head and say, blankly, "I don't know."  Same thing for her own name.  Friday evening, she knew Greg by name... and then my cousin Amanda.  But it was late Sunday evening when I asked again, and she knew my name... and she was able to give her own name on Monday.

Saturday morning, the therapist came to do some exercises, but when she and the nurse lifted Mam-ma from the bed, Mam-ma virtually collapsed in dead weight, and they just sat her in a chair. The therapist, who is a friend whose grandmother is Mam-ma's contemporary, mouthed from behind Mam-ma... "You're doing the right thing" (meaning Hospice). That made me feel more confident in my decision.

Sunday was horrible. Mam-ma required several "brief" changes, and the nurses were always so kind.  But sometimes it was an hour after we rang for help... and that is just too long - even if you are understaffed.  So I had to make a few trips to the desk to remind someone I needed help!

By the time Sunday ended, my grandmother had suffered through several hours of severe gas pains that left her screaming in discomfort. She was unable to eat her dinner, and I discovered that while we were at lunch, Amanda and her dad had come, and Mam-ma had sent them home with some harsh words... she had a messy diaper and was embarrassed, and she told them in some pretty colorful language to go home. So they did. Another cousin came before dinner, and she helped me with Mam-ma for a while... managed to feed her some applesauce... and Mam-ma finally settled down and seemed to stop hurting around 7:30 p.m. I hugged her and promised, "I'll take you home tomorrow." She frowned and said, "Debbie, I'm worried about you.  You're doing too much."  I explained that I was only doing what she needed, and I would be okay.  Later, as I kissed her goodbye, she cried and said, "Oh, Sugar... you've done so much... you are just so precious." I left in tears.

I came home and tearfully told all of this to my husband... who had been there with me for part of the afternoon drama... and he said, "You are overly tired. It will be okay." I was... and it is... but that was a rough day.

Monday, I arrived at the hospital, and the aide met me and said, "She hardly ate anything this morning." I took one look and said, "I can tell you why - she isn't wearing her teeth again!' This was another aide, and she said, "But it was pancakes and scrambled eggs!" I replied, "I don't care... she's not gonna eat without her teeth!" So the nurses ordered another tray and apologized profusely. This is "Nursing 101!" The charge nurse said, "If you were staying another night, I'd make a sign that said 'Be sure to check for her teeth before feeding!'" After meeting Monday morning at the ALF with Hospice and ALF staff, we got Mam-ma settled back in her apartment by late afternoon. No less than six aides, a nurse, and an administrator swarmed the hospital van to greet her when she arrived. That was such a great sight... I knew we were truly home. I spent more than an hour with the Hospice nurse and social worker, filling out paper work and getting things in order. It was another long day.

Mam-ma seemed to do well on Tuesday... a Hospice aide came and bathed her. She has a hospital bed, a wheelchair, bedside toilet, and oxygen if needed. The four days per week that the ALF staff doesn't give her a bath are covered by Hospice aides who come and bathe. Mam-ma was concerned about me "doing too much," so I told her I would stay home on Wednesday and not visit. Honestly, my house was so dirty and messy, and I could not rest until I knew it was in some semblance of order. It never felt so good to clean a bathroom or dust and vacuum! I made potato salad and spaghetti sauce to freeze for quick meals and just basically caught up on things that had been neglected for nearly two weeks.

Thursday, we had a Mother's Day luncheon at the ALF. I had told the administrator that my sister and I would attend - and if Mam-ma could not attend, we would sit with some mother who had no one there to sit with her. When we arrived, Mam-ma had been bathed, and she had on pajamas - even the pants! Her favorite Hospice aide was there, so I didn't question the pajamas... although she had worn hospital gowns up to that point. We asked if she felt like going to the luncheon, thinking she would say no... but she said yes, and she wanted to wear her nicest suit! So the aides dressed her, and off we went.

Looking back, this was a huge mistake. Mam-ma smiled and looked beautiful... and many came to the table to greet her. But she barely ate, and she didn't have a clue about where she was or what was happening. Back in her room, she immediately fell asleep in bed... clothes and all. A short time later, an aide got her up to curl her hair, since she didn't feel like going to the beauty shop for her regular appointment.  This was all just too much for her.

During lunch, the activities director stopped by our table and told us that Mam-ma had come out to the dining room and played BINGO the day before. This was news to me, and I was quite shocked. I knew the nurse had told me she wheeled Mam-ma to the dining room a couple of times... but she had also told me that Mam-ma did not get up for any meals on Wednesday. I'm not sure exactly what she did. But the bottom line was that I realized that the staff had put Mam-ma right back into her old routine and was pushing her to get back to her "old self." I didn't know what to do, but I figured she was pretty close to "hitting the wall."

I was right. Friday morning, the Hospice nurse called me and said, "I've just seen Polly, and she is totally out of it. She cannot stay awake... she is lethargic... I don't know what happened!" I did! I explained how much that Polly had done last week, and the nurse told me that this had to stop. I agreed... but how? She told me that I needed to contact the administrator and discuss this with her... and I did... and we agreed that Mam-ma takes meals in her room, stays in her hospital gown, and only gets up for a little while each day and sits in her recliner - at least for now. She is still in a lot of pain, and only 14 days out from a major surgery at this point. Plus, she is less than 6 months from being 100 years old!!! Because Mam-ma looks so much younger - and generally acts it... and because the staff loves her so and wants her well... they were really working to rehab her back into shape!

So I'm getting some dirty looks and have had to go back and reiterate to a few that we are NOT pushing... that "less is more" in this case. But we seem to be getting there, and I do think this is the best thing for my grandmother. I am not willing her to die... nor giving up on her. I am managing her care. There have been times when I have called about something or gotten involved in a detail here or there, and my husband has suggested that perhaps I am micro-managing her care and causing myself undue stress. The Hospice nurse assures me that I am not... that I am simply loving my grandmother and making sure she is taken care of. It's hard to know how to balance this... and what can slide and what is important. I'm in some uncharted territory here (at least for me), and I am doing the best I can.  When I visited today, a new shift of aides was on board, and Mam-ma had been to lunch and was dressed in pajamas again.  So I had to "educate" them on the plan... apparently the word about her care plan did not get to them.

One aide seemed to question my comments... I told her and another aide that the doctors feel that even with therapy, Mam-ma most likely will not walk again, and this aide said, "Oh, I disagree!  They don't know Ms. Polly!"  Maybe not... but I do, and she is almost 100 and 14 days out from a major surgery.  For now, at least, bed rest, meals in her room, and no wheelchair rides is the way to go.  I did consent to letting Mam-ma wear her pajama tops instead of a hospital gown.  She says the gowns "choke me."  So she can wear the tops and a robe when sitting up in her chair... but wrestling on a pair of pajama pants is preposterous for someone in her condition!

I am so thankful for Hospice. I told someone that Hospice is as much for me at this point as it is for Mam-ma. I needed their support and guidance. I needed to know that someone who knew more than I will manage her care and help me with all of the decisions. And I needed someone I could call (besides a family member or friend) who was an expert... and who could be my sounding board.

At this point, we are day-to-day... or is it minute-to-minute?! Things change constantly with my grandmother, and I'm not anticipating anything at this point - good or bad. I'm trying to let things happen, and be prepared for whatever comes next.

Meanwhile, our little Timothy celebrated his 3rd birthday Sunday. We sent lots of wrapped gifts, and he had a big day with his family. We're hoping to hear from him firsthand soon about all of the festivities and get his reaction. I wish we could have been with him for this celebration... but at the same time, I'm so glad he is with his mother right now and not factored into this mix! God knew I couldn't handle both... and He was right!

Saturday, May 5, 2012

Making Some TOUGH Decisions...

This week has been like a giant roller-coaster ride.  Wednesday - DAY 1 of Post-op, was a painful day.  Mam-ma's pain was never controlled, even with morphine.  Part of the problem was that the nurses got busy, and through a series of circumstances, she did not get any pain medication from 10:30 a.m. to 4:00 p.m., which caused her pain level to spiral out of control.  Knocking it back down was a daunting task.  She moaned and cried out in pain almost continually - even when she appeared to be dozing.

DAY 2, the pain was not much better, and as Mam-ma began to drink more liquids, I noticed she was not having any output.  I asked about this, and the nurses said, "We changed her at 9:00 a.m."  I asked again.  At 4:00 p.m., I went to the desk and said, "She HAS to be wet... can you please check?"  The nurses came and changed her... and declared her "Just a little damp."  I questioned... how could this be?  She had been drinking... Coke, sweet tea I brought from home, a Miralax "cocktail"... and she had been given TWO doses of Lasix!  No real answer.

When the shift changed at 7:00, I asked the nurses to please check again... surely my grandmother was wet now.  These nurses changed my grandmother, and again she was "barely damp."  However, this time, they noticed that her bladder was distended and tender.  She had told me her "belly" hurt.  The nurses did a scan of some sort that told them Mam-ma had at least 400 cc's of urine in her bladder.  They inserted a catheter, and almost immediately, Mam-ma's pain left, her whole body relaxed, and she has been like a new woman ever since!  Apparently the bladder muscles never woke up after surgery, so her body didn't know to relax and "go!"  I'm still not sure that is corrected completely.

I wish I could say the confusion is clearing.  Mam-ma looked brighter yesterday and has not moaned out in pain since Thursday night - except when they move her in bed or from the bed to a chair.  She still can't tell me my name sometimes - or hers - but she knew my husband yesterday afternoon.  He walked in, and I asked, "Who is this?"  She grinned and said, "GREG!"  Then she knew my cousin Amanda by name.  We thought maybe the anaesthesia was wearing off and she was clearing mentally.

Today, she is back in a fog.  I arrived at 9:00 a.m., and the aides said, "She drank her juice, but she wouldn't eat.  We got a couple of bites down her."  I looked at Mam-ma... she was not wearing her dentures.  I told them, "No wonder she didn't eat... she doesn't have her teeth."  "But she drank her juice!" they countered.  "Yes, but she can't chew without her teeth!"  So I put in her dentures.  The ward clerk retrieved Mam-ma's breakfast tray from the meal tray cart and re-heated her eggs, biscuit and coffee.  Mam-ma ate ALL of her scrambled eggs and half a biscuit with jelly... and she drank half a cup of coffee.  This is the most she has eaten all week. 

I told my husband a couple of days ago, "If I ever have to be hospitalized, PLEASE DON'T LEAVE ME THERE!"  If you or a loved one has to be hospitalized, be sure you have an advocate.  I have left my grandmother for a few hours... and these are good nurses... but I would not leave her there all day unattended - and I am there for both shifts, so all of the nurses know me.  My name and phone numbers are on the white board, along with the reminder that "Polly is DNR."  One nurse told me, "It is so much faster to pick up the phone by her bed and read your numbers off that board than to go search for her chart and look up your contact info."

Yesterday, given the lack of progress and my grandmother's inability to put her feet on the floor and stand, I asked one of the R.N.s (who calls my grandmother "Aunt Polly" and knows her well) what she thought about the possibility of putting Mam-ma in Hospice care.  Her eyes welled with tears, and she said, "I think that's a wonderful idea."  She said that she would call the Hospice coordinator and get the ball rolling.  I know many of the Hospice staff well.  My brother worked with them as an R.N., and then when he was dying in 1998, they cared for him.  They have cared for other family members since then, and the coordinator attends church with my mom.  They all know Mam-ma Polly well...and love her dearly.

The R.N. friend returned to Mam-ma's room soon to tell me that the coordinator was not in agreement - she wanted us to try therapy at the nursing home first.  I could not see the point in putting Mam-ma through the pain of therapy if every doctor and nurse are telling me she probably won't be able to walk again.  She can already sit in a chair - we don't need to go to the nursing home or get therapy for that!  So after I talked with the coordinator myself, she said if Mam-ma's facility physician would agree to Hospice, she would agree.  The facility physician agreed 100%. 

As it stands now, we will move back to my grandmother's apartment on Monday, where she will be placed on Hospice care.  A hospital bed, wheelchair, oxygen and bedside toilet chair have already been placed in her room.  I have paper work to complete on Monday, and the hospitalist heartily agreed to keep Mam-ma in the hospital until Monday.  Everyone tells me, "You are doing the right thing."  Based on this and how doors have continued to open at every turn, I believe this is the right decision.

This morning, the therapist came in and helped set Mam-ma in a chair (with the assistance from an aide), and she mouthed to me, "You are doing the right thing." Her own grandmother is in her late 90s, and I asked, "What if this were your grandmother?"  She answered without hesitation... "Oh, absolutely, I would do the same thing!" 

Mam-ma Polly - November 2009
A few have questioned me, or hung their heads at the mention of Hospice and said, "I'm so sorry."  But I just smile at them.  Today, my grandmother is exactly 6 months from her 100th birthday.  I have two goals for her for the rest of her days on this earth:  1) to be comfortable, and 2) to be happy.  The best shot she has of accomplishing this is to go back to her apartment at Southridge ALF and be among staff who love her and her many friends.  No more sorrow, no more pain.  My sister works the weekend nights at Southridge as a nurses' aide, so she will be there to keep an eye on Mam-ma, adding another layer of comfort for both of us.

Was this an easy decision?  Absolutely not!  I told the Hospice coordinator, "You know that my family is not eager to expedite things for Mam-ma."  She replied, "Of all the people in the world, I know that you are all the last people who would do this!" 

According to, "Hospice is a range of health and comfort care services that are delivered to patients who are nearing the end of life. In most cases, these patients have refused or otherwise are ineligible for receiving curative measures such as surgeries or advanced medical treatments. They are expected to live for 6 months or less after their admission to hospice care. The foremost consideration in hospice delivery is providing increased comfort care services."

As a friend who visited Mam-ma yesterday said, "People need to realize that Hospice care is not an immediate death sentence!"  We love my grandmother... this was a hard decision... but I believe it is the best for her. I don't know how long Mam-ma has left, but I want each day to count - and be a good one - as much as possible at this stage.

As I fed Mam-ma this morning, I thought once again of the many times in recent months that I have fed Timothy.  For someone who has never actually been a mother, I have certainly done my share of "mothering" in recent years - at both ends of the spectrum.  At the same time, one of the physical therapists who came in the other day was talking about how so many of their patients trip over small dogs or cats at home and fall.  I told her that my 86-year-old mother-in-law keeps dogs, and we worry about this happening to her.

The therapist said, "So in addition to your grandmother, you check on your mother-in-law?"  I told her yes, and until recently, we were helping to care for our 2-year-old great-nephew.  She replied, "WOW!  Your life is so RICH!  That's wonderful!"  I certainly don't hear that very often!  But she is right!  In so many ways, we are rich - and blessed - to have been given this opportunity... even with its challenges, rough patches, and tough decisions.  With God's grace, we're keeping all the balls in the air and making good choices...and I pray that this continues.

Thursday, May 3, 2012

And So We Wait...

The call I have dreaded, yet halfway expected, came Monday evening around 11:15, when the RN for the ALF notified me that Mam-ma Polly had fallen in her room, and her w lords to the aide on duty were, "I think my hip is broken."  An ambulance had been summoned, and the nurse said, "We're not moving her until the EMTs arrive, and they will do the minimum necessary to get her on a gurney and transport her."  She told me they hoped it was only a deep bruise, and we would return to the ALF and start therapy.  However, if it were broken, we were looking at immediate transport to Little Rock to another hospital.  "So gas up your car and get ready," she admonished me.

We arrived in the ER, where my favorite attending physician and nurse were on duty... answered prayer #1.  Dr. Bottorff took one look at her and said, "I'd be willing to bet it's broken - one leg appears to be much shorter than the other.  He was right... and the x-ray he showed me was astounding.  Mam-ma snapped her femur just below the ball and socket, leaving a sharp shard pointing downward, and jutting her femur (which resembled a spear) up above her hip ball and socket.  Thankfully, there is a surgeon on staff, and the ER staff admitted her to the hospital and placed her leg in traction to hopefully pull the leg bone back down into place and give her some relief.

We discussed the options, and the surgeon and hospitalist both told me that surgery was the only option... and they felt that Mam-ma was physically a good candidate.  To let her lie and heal without surgery would be risky, painful, and basically not an option.  So Monday afternoon around 3:30, Mam-ma was wheeled to the OR, where the leg was repositioned, and a rod was inserted and screwed into her leg near the hip ball and the knee.

Since then, we have been working on controlling her pain and getting her up; however, she has only sat up twice since surgery, and she cannot "walk" at all... cannot even move her "good" leg with prompting.  I am not certain at this point how much longer we will be in the hospital... the nurses say through this weekend... today's hospitalist just said she would go to the skilled care nursing facility as soon as tomorrow.  He was very pessimistic about her walking and recovering.  He did say IF her mind is clear (it is - or was) and she was mobile before (she was), she has a better chance of recovering... but he was still not encouraging.

The surgeon admonished me that "in the next three years, the fatality rate for hip surgery is as high as 50%, due to complications."  As one dear friend - and Hospice nurse - told me on Tuesday morning, "this may be the beginning of the end."  The worst is watching Mam-ma suffer.  She cries out almost constantly in pain.  Yet when you ask, "Are you hurting?" she replies, "No!"  However, the furrowed brow and her cries from her "sleep" belie this.

Meanwhile, my sister and I have been hospital sitting.  My husband was with me for the ER portion and much of the next day, and he is tremendous support.  I have already gained a reputation as a "bulldog" at the nurses' desk... one that doesn't bother me in the least.  I am looking out for my Mam-ma, and I will never apologize for that.  We have wonderful nursing care; however, things happen, and already I have been reminded how important it is to have someone overseeing things at all times.  We have not stayed with my grandmother overnight, but we have tucked her in each evening, and I am about two minutes from the hospital, with phone numbers and other info posted on her white board.  I don't know what lies ahead when we transfer to the skilled care facility.  I figure I am going to have to do a lot of monitoring... but also a lot of trusting.  I must remember to pace myself.  Thankfully, I have lots of loving folks who will remind me of this!

The nurses are gently telling us that Mam-ma probably won't get out of bed much, based on the "progress" these two days... that we most likely are looking at a permanent move to skilled care nursing, with possible "sit-up" sessions in a bedside chair or for the toilet. We know this is out of our hands... and beyond our control... but we know that Someone is completely in charge, and we are trusting His outcome. And so we wait.