Am I letting the rope slip?

I have said before that I felt like I was my mother’s anchor in reality.  Everyday, at her old place I would come to visit, for coffee or play cards.  When she moved, however, I knew I would not be able to come everyday, and many said it would be better for me if I didn’t – less stress, taking back my own life, and such. 

Well, she has been in the new place for a month now.  I see her 3 or 4 times a week, instead of 7, my visits are an hour or two.  At first, she was just settling in, she was getting used to the routine, meeting the people and finding her independence.  I had such high hopes for her finding a friend, and joining in on the activities.  The people are much nicer here, and there are really great activities on most days. 

She had put a good deal of effort into making friends with a group of ladies, one in particular, eating with them, going to church with them.  But after only a week or so, she said they were not what she thought them to be, and she didn’t want to sit with them any more.  She has stopped wearing her hearing aid, and gets frustrated when I put in on for her.  She eats all her meals (that she can get away with) in her room, and seems to be retreating into a smaller place in her mind.

She has trouble, not just remembering, but in grasping reality.  I remember my grandmother, her mother – Gramma Nea, getting angry with us (she lived with us) because she thought we were trying to hide the stairs from her, so she couldn’t get to her “other” room – one that looked JUST like this one, only upstairs.  Well, guess what?  My mom is now doing the same thing.  She is positive that she gets trapped in her “other” room, and that no one knows where she is, and that she isn’t sure how she got to this “other” room, but she doesn’t know how to get back to her “real” room.  She admits that the rooms are identical.  Logic sometimes does prevail, as I ask her how there could be two rooms with duplicate paintings – paintings she painted herself.  She concedes that it must be the same room, but that only lasts a few minutes, until she begins telling me about her ordeal again, and how she was trapped in the other room. 

I know that her lapse in memory if frustrating for her, and her brain does it’s best to make sense out of the missing pieces.  She is starting to get paranoid now.  When she called me yesterday she said she wanted to talk to me, but would wait until I got there, as the phones were not safe – people are listening. 

The staff that I have met are kind, and helpful, even when they don’t know I am there, but she tells me they don’t like her because she isn’t one of the IN group. 

I have involved the director of nursing in helping me to keep her active and participating, but she tells me she doesn’t want to, and tells them to go.  She she does, however, like the Computer Class on Wednesdays, and sometimes she likes Bingo.  She has even lost her focus on her puzzle books, any reading, and even Baseball. 

As much as I logically understand the big picture, I still know that this decline is because I have not been there with her every day.  She was slipping before, but always came back when I engaged her.  Now she slips and doesn’t come back.  I feel so guilty, because I know it is because I am not there, but then I realize that I can’t be there all the time, but then I…. What a nightmarish spiral!  I sit and watch her struggle through the mire of her confusion trying to remember something, and I try to help her by showing her the logic of the reality, but often I think she just thinks I am trying to trick her or that I don’t believe her. 

She is starting to say things like, “I am starting to think I was better off at the other place…” and “Is there somewhere else I could go? I hate this whole going to the bathroom thing!” 

The saddest thing was that Katie had put a picture of my dad at age 17 (granted, it was taken well before she knew him) on a table across from her chair.  She told me she didn’t know why that picture was there, she didn’t know who that was, probably a relation, but no one she knew.  I brought it closer to her and explained that it was Daddy, but she couldn’t see it and asked me to take it away.  I replaced it with a more recent picture of both of them in Hawaii. 

It seems that her world is getting smaller and smaller, and I can only watch her retreat into it.

Settling in at last

I can’t believe it has been a month since the last post!  It actually feels like a completely different world since then.

Because of the way Medicaid works, we had to wait until April 1st to make the transfer, so we didn’t have to pay for days out of our pocket.  We also opted for the private room, which, if it is financially feasible – is completely worth it!

April 1st – Moving Day:  I came to the Nursing home to pick her up, at about 8:30 in the morning.  We  had to wait a little bit for all the paperwork to get signed off, but after about 3 trips to the car to bring out the final belongings, we said our goodbyes and headed out.  It was a little crowded, since Gary helped me get her Electric Recliner out of her bedroom at home and into my car. 

With a Resounding Raspberry (“phfthphfthththtththththt!) we drove away.  She was in great spirits, claiming, anything would be better than where she had been, and that would be a blessing. 

We went in, and were escorted to her new room, we weren’t there for an hour before it was time for lunch.  I left her to have lunch there, while I went to pick up my kids, who were anxious to help move Grandma into her new place… Katie (15) had spent several hours putting together photos in frames, and collecting “cozy and homey” things from her room to decorate her new room with. 

When we got back, my mom couldn’t stop talking about the Fried Chicken she had for lunch!  That was a good first impression.  We spent most of the afternoon with her, and left her when it was time for dinner. 

Having her Recliner in her room has been the best thing ever. Since she is in a private room, there is room for it, and she can sit in it and sleep, or work her puzzles when ever she likes.

When she was at the first place, I couldn’t imagine leaving her there, and not visiting her everyday, because her depression was so volatile.  But the following day we had planned a long weekend out of town.  With her cell phone, she was able to call me everyday, and each time we spoke, she told me how nice it was.  I really felt like she was happy and content.

I have been able to knock my visits down from 7 days a week to 3 – 5.  I could never have imagined that before.  My sister Linda calls her every Wednesday Morning, and has been for the past few months!  Momma really enjoys the calls, and often speaks about it for days after – she likes being thought of.  The difference is that before, she didn’t really have anything to say, and usually ended the call after a few minutes, but now, she has stories to tell and is much more involved in the call.  For now though, Linda and I coordinate so I am there when she calls so I can translate, in case Momma didn’t hear or understand something.  Momma has a cell phone and struggles with it sometimes, but there is a speaker button that puts the call on speakerphone.  This helps her hear better. 

She has been there 19 days now.  She has made a few friends (a driving reason I have been cutting back on my visits, it compels her to make friends) and has made amazing progress in her independence.  She can now get into and out of her recliner alone, but she is still struggling with the bathroom, although it is much improved.  She is back on Physical Therapy, and has made great strides in walking in the parallel bars.  She is so excited. 

Her short-term memory is very bad, and sometimes can’t remember events from yesterday, or even earlier in the day.  So her opinion of the staff, her friends, and the facility is only as good as her most recent experience.  

Her hearing is my current mission.  She currently is using an amplifier, the size of a small transistor radio, with a pair of ear plugs (she only uses one side).  This seems cumbersome, and she often doesn’t wear it, and then feels like people don’t speak to her, mostly because she can’t hear them.  I have gotten a few flyers in the mail for hearing specialists, so I will see if I can get her something more convenient.  She has expensive hearing aids (well, one now, the last home lost one.) but she cannot put them in, take them out our turn them on alone. 

I do have to say, that the place makes a difference!  The people are nice and friendly, and no one is mean.  She still has issues, but many are perception, and some are even misdirected.  Having her own place where she can get away and be alone, in her familiar, cozy surroundings, makes the biggest difference.  And I have to publicly thank, and acknowledge my wonderful family who have so graciously, and with some sacrifice, begun to contribute monthly to see that she can keep her private room.  You all are angels to me, since I am not sure how long I could keep it up on my own.

So, after 2.5 weeks, she smiles all the time, she always has a story to tell, she laughs, and is physically getting stronger.  I have requested a few modifications for her, and I have been impressed that no sooner did I ask, but they were carried out, and usually before I even left the building!

In Like Flynn!

I did it! I got her in!

I kept calling the Medicaid office until I finally found out she was approved!  Then I called Heather at the Hotel-like home, got her Voice Mail, and told her we were approved, and asked her about the rooms we saw.

We have been trying to keep it quiet at the facility where my mom is currently, so people don’t treat her badly.

I just got the call from Heather – one of the rooms (the first one we liked so much) 217 was available!  She could get this processed in just about a day.  I just needed to speak with the Current Social Worker, and have her fax over the appropriate paperwork on my mom, then Heather and her team would approve it, and we could move.  In order to avoid overlapping payments, she asked if we could do a first of the month move – YES!  I asked if that room would still be available, and she said that yes, “Most people don’t like to pay the $5 per day additional fee for the private rooms.”  I said, “so a private room costs extra?  And Medicare doesn’t cover it?” Well, that made sense, and it was only $150 a month, and it made so much more sense to have her in a private room, instead of a room with a roommate that may or may not be social, or communicative, or nice.

So, yes, please, make it a private room.

Now I just have to talk with the Social worker tomorrow and get the ball moving.  My friend, Laura said, “Maybe you should wait til later in the month so that she isn’t mistreated.” Something worth considering, although I would hate to think that would be true.

15 days and counting!

Ask and Ye Shall Receive

I will forever believe that if you ASK for help, you will actually get it!

I was at my wit’s end; my mother was so depressed and wanted to get out so badly, and I couldn’t figure out the process.  So I called the “Hotel-like” one, and asked the Administrative Director, Heather, “Please help me!  The residents where my mother is now are MEAN to her and I have to get her out!”  It was Heather that helped me understand the process, and asked me the right questions.

The key was that my mother was “Medicaid-Pending” that was good.  When the Medicaid was approved, they could easily transfer the application to the new location and she could move – as long as there were beds available.  Heather told me she thought they had a few beds available.  I then called a few more places, to test this theory.  Sure enough, my new terminology (and mind you sad story about my mother’s plight), and request for help, elicited the same response from the other facilities.  Only a few had available beds, and of those, I really liked the “Hotel-like” one best.

Heather told me I needed to wait until Medicaid was approved, and then we could make arrangements, as long as when it was approved, she had beds available.

This past weekend, as much for something to do, as to make sure we still liked this place, I took my mom on another road trip.  We left her current facility, with my  mother making some sort of derogatory hand gesture, and headed to the new place.

We drove up, and decided to take a “self-guided” tour.  We requested the door code, and then headed off on our adventure.  We circled each floor several times, looking at what the residents were doing, and checking out what it was like – it was Sunday, before lunch.   Of course there were folks gathered around the Televised Church sermons, but there were others gathered in groups, chatting, and others in their rooms.  On each floor, we found an empty room.  The first one we found was on the second floor – 217.  Wow, nice – a private room, and lots of space.  Momma had asked if she could bring her Electric Recliner – it stands you up, and brings you down.  There seemed to be room enough for this chair in her room.  She had her own sink in the room so she could brush her teeth, wash her hands, or do whatever, and her own bathroom, and a huge window!  It seemed so much more like her space at my house, and I could see her getting used to it quickly.

We moved to the next floor, and found another room – this one was similar, smaller window, but her door faced out on a wall of windows over looking a small garden – Very nice!  The next room was on the ground floor, more removed, in location, but similar in size with another big window.

We got to speak to a few more residents, one of whom told my mother she was beautiful, that was all she needed!

After we left, we stopped at Taco Bell, and talked about what we saw.  She told me she really would like a private room, it would fell more like a home, and less like a hospital room.  She really liked it.

It was a waiting game until her Medicaid was approved…

The Search Begins

Of course my mother’s happiness is important to me.  I have been going to see her everyday for 3 and a half months.  And now, as she has been interacting with the residents more and more, I am finding that of the ones who COULD be social, most are just down right mean.  Some of the residents are NOT mean, but the lack of meanness doesn’t make them good company.  So, my mother depends completely on me for interpersonal interaction. She told me if this was going to be forever, something had to change.

Also, my mother’s intense hatred of this this place (mostly the people) is poisoning her attitude, making her depressed, prone to anger and frustration.  I needed to get her out of there.

I started my campaign by phone.  I got a list of Nursing Homes in the area, and started calling.  I began by asking about the facility, asking if they took medicaid (as she was in the process of applying for medicaid), and if they had any available openings.  I was told by all 8 that I called, that they had no beds available, and that the beds that they might have would be given to the patients coming in from their Rehabilitation Section.  They asked if my mother was on Rehab.  I said no, they said then she would most likely not be able to get in.  ALL OF THEM said that!!!  I couldn’t believe it.  So I began looking into getting her put back on Rehab… short of pushing her out of her chair… but I wasn’t getting any where. I decided to take her on a road trip to see a couple, in the area, just to get her opinion.  One of her complaints was that “Nobody asked me what I thought, I was just put here!”

So one fine almost-spring-day, I picked her up for our first day-out.  A bit complicated, but we managed pretty well.  I was surprised at how much she could do on her own, without someone lifting her, and by just being patient.

Her criteria was “I want it to be cozy”  and “the people should be friendly and want to talk!”

Armed with this information, we set out.  First stop – Taco Bell for a quick lunch. My mom LOVES Taco Bell.

First we went by a small, neighborhood home.  We went in, and immediately to the left was a living room, with couches, chairs and a tv.  Five of the residents were sitting there, watching a movie.  We embarked on a tour, which, in my opinion demonstrated a lower quality facility to where she was, and a “less than lively” resident population – Granted it was just after lunch, but it seemed pretty sedate.  At the end, we sat down and asked one of the residents how she liked living there, she looked down, and said, “I’d rather not say,” then glanced up and made a slight grimace.  As we left, my mother just gushed, “I loved it! It was so Cozy, I felt completely at home!”  I was surprised, but realized she was focused on just one thing, getting out of the Sterile environment, and this place was certainly “Less sterile.”

Next stop, was a place a little further away. It seemed like it was on the far side of the “Hood.”  We finally arrived, after only 2 u turns, and entered through a nice security gate.  This place was huge, and very nice.  We entered through a loby which had a large fireplace and several chairs.  There was a receptionist at a desk there.  We asked her for a tour.  I wouldn’t have called it cozy, but it was very nice.  There were three floors, some more upgraded than others, but she was kind enough to introduce us to some of the residents.  I was so moved – each one, reached out, touched my mother on the arm, knee or hand, one even stood to hug her, and said, “Hi honey, are you thinking about coming to stay here?  Look me up if you do!”  And we were invited into some of the rooms of these folks, and THAT was where the COZY was, I haven’t seen so many crocheted throws, stuffed animals, china dolls and doilies in years!  The halls seemed a little “Less-brilliantly lit” than her current place, making it, in all its “Hotel-like” grandeur, a bit more inviting.

Now to figure out the secret to getting her INTO one of these places!

Mean People

For weeks my mother has been angry, frustrated and tired not having anyone to talk to.  She tells me of her travels through the halls, where no one will look at her, or speak to her.  She tells me how there is no one who is as “rational” as her to talk to.  She has developed an honest hate for the nursing home she is in.  She gets more and more committed to this feeling everyday I see her.  I had, I am sorry to admit, initially, chalked it up to her confusion, and general disorientation.  I spoke to the staff, and they told me they would help to seat her with and encourage interaction with people she could talk to.

Lillie is a quiet small woman, I believe I heard a rumor that she was once a lounge singer.  She cruises around in a non-motorized wheel chair, and smiles at me when we see each other.  But she is not a talker, she will say hi, she will make brief answers, but she is not a conversationalist.  My mother interprets this as Lillie doesn’t like her.  Usually, when I have seen them together, my mother does not have her hearing aid on, and probably isn’t hearing most of the conversation, as little as it might be.  This is why, I, sadly, assumed she was over reacting.

One Saturday morning, I came by, and found my mother in the dining room.  I peeked through the window in the door and saw her having a lovely conversation with a gentleman at a table.  I stood there watching, smiling, and was very happy, until I became aware of  very loud, sharp, cutting,  comments being made; “Shut up!” “Be Quiet!” “Get out!” and I turned to see a few women looking angrily, no, vicously, at my mother.  That is when I noticed the lights were dimmer and there was a movie playing on the tv in the back ground.  I stepped in before the angry mob started to converge.  As I did, one of the women confronted me, and said, “Is that yo’ mamma?  You gotta get her out – take her on outta here.”  I looked at her as I passed and said, “Now, that isn’t very nice, Mrs. Strong.” and I stepped up to my mother and quietly interrupted their conversation (that didn’t seem to have suffered for all the venom being spat.)  I introduced myself to her gentleman friend, and then suggested she and I leave to go play cards in another room.

At that point, I honestly understood what she had been talking about.  A week later my mom and I were going down a hall, and another woman, who often eats with my mother and Lillie was leaving the dining room.  We said hello, and asked how she was, she told us she had just been asked to leave the dining room – she said, “I guess I wasn’t dressed appropriatly.” But she was very hurt.  Honestly, I haven’t seen her in the dining room or near there since that day.  I was beginning to see what my mother had been living.

She was living in a residence where the inhabitants were just down right MEAN.

Diapers versus Pull-ups

Not since I was a new mother have I ever been so involved with another person’s bodily functions.  But I guess I should look at my experience with my two children as on-the-job training for my current situation.  My mother is, just as my children were, not used to recognizing the signals your body gives you when you will need to “use the restroom.”  Before she fell, she was completely in charge of her own “personal” issues.  She went to the restroom on her own, and managed just fine.  But she has been wearing an adult diaper since she was taken to the ER that morning she first hurt her leg.  It was necessary then, because she could not be moved around to get her to the toilet.  But now, almost 2 1/2 months later, she has lost all of that independence, and now needs assistance for even the most personal of tasks.  The problem is, that she hates, hate?  that is too mild of a word… she despises – no – she has murderous intentions towards - the diapers.  When she “goes” in the diaper, it hurts her, and she gets angry. Her “off-color-language” is usually directed toward the diaper, or those that are making her wear it. 

She knows that others wear a more “pantie-like” garment, a Pull-up, if you will.  She demands constantly why she cannot wear that? 

The answer, which she refused to hear, is that you cannot just “go” in the pull-up.  They are quite expensive, and cannot be changed constantly like a diaper.  They are also not as absorbent.  So, she was not offered them, as she was not being able to “hold-it.”  She needed to get CONTROL back in that area.

I knew, that one by one I had been addressing all the issues, complaints and roadblocks she was experiencing, and that this diaper issue was going to be one of the final, big ones.

Without going into detail about the personal and intimate details, let me just say that we had some very graphic conversations and interactions this weekend, and since her favorite CNA, Tamica, was not there this weekend, we were at a loss to fully address any of the issues completely.  However, on Tuesday, Tamica had returned from a vacation (I told Tamica that when she is not there, things seem to go to hell in a handbasket.) and I explained the experiences we had been having to her and she immediately got Stacey, the Unit Manager, involved.  Another gift from God, Stacey.  Stacey stepped in, we explained the situation, my mother told her what she wanted, Stacey told us what could be done, and doggone, if she didn’t put it into action THAT DAY!  This morning, my mother was on a “toileting” schedule, she was wearing a pull-up, and went to the toilet TWICE while I was there.  Stacey asked me if I would take a shift in the Toileting schedule, while I was there having our morning coffee, to help take the pressure off Tamica and the other aides, I said, if it will help, then Yes.  So when I left this morning, my mother was all smiles, when she spoke to my sister, Linda on the phone she mentioned, “where I live now…” and she has never made that statement before.  This has been a huge break through, and one of the final, MAJOR obstacles to her comfort and happiness has been removed.