Wednesday, June 20, 2012

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

1 comment:

Mark said...

I need to stop reading this at work. Posts like this get me choked up, not just for your Mam-ma and everything she and your family are going through, but for my own worries about those I love getting old and passing. Then, that I'm next. I wish I had the faith you have.