My Mom

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My mother has dementia.  She was diagnosed with early Alzheimer’s, oh, maybe about 15 or 20 years ago.

My mother and I have always had a very rocky relationship. I was the only girl, the oldest of 4.   The boys meant everything to her and I was, I guess, Daddy’s little girl.   He was a terrible husband but a good father.

I moved to Texas with my husband and two dogs in September of 2008.   Our daughter, Rachel, was already here because she went to school at TCU in Fort Worth.   We were looking for a place to move to that was warmer and less expensive than New Jersey.  The property taxes in NJ were outrageous and we were just tired of the winters.  We thought of Arizona and maybe Austin, TX, but ass it turned out, we moved to Fort Worth, where Rachel spent her college years.  The winters are not quite as warm as I expected, but still much better than the long, cold and snowy winters of NJ.

We left behind my father, who lived in Pennsylvania. Leaving him was one of the hardest things I have ever done.  He wasn’t well and my last vision of him was him crying at his front porch as we drove away.   We had plans to visit him for Easter in 2009.  He was excited because we would be together for Easter dinner as we almost always were, with my brothers and their families.  (My mother and father divorced when I was about 21, she remarried a man only 10  years older than me.  That’s another story, maybe for another time, maybe not, but they are still together and as of this moment, they  are both in nursing home faciliies, here in Fort Worth).

So I went to NJ to visit my family on April 9, 2009.  My dad was in the hospital, I spoke with him when I arrived in Newark Airport, and I was going to stop and visit my aunt on Friday, then Saturday to my Dad’s and then Easter dinner on Sunday.   I visited with some friends Thursday night when I arrived.  My dad sounded fine on the phone, complaining about being in the hospital, but he didn’t sound any different from any other time he was there.  He was wearing down though, he’s been in and out of the hospital for years, he was on dialysis, had infections and multiple other health problems.   My brother, Jackie had to drive him around because he couldn’t drive anymore with his health problems.  I knew he was very sick, and not only sick, but tired of being sick.
So Friday morning, I was at breakfast with my friend, Ginnie, and Jackie (my brother) called and said that Daddy has taken a turn for the worst.  They didn’t think he would make it.  He had a Living Will and I was the Power of Attorney to make decisions.   I have been through this many times with him and always decided to keep him alive, but this time was different.  He wasn’t responding at all and I knew he was tired of being sick and in pain.  I talked with the doctor and Jackie on a conference call and we decided to keep him off of life support.  I went straight up to the hospital in Pennsylvania (about a 2 hr. ride from where I was in New Jersey) and saw my dad.  He could barely breathe or move.   I think knew I was there but he was just laying there in pain and the look in his face was kind of a look of fear.   I knew he wanted it to be over with.    My brothers were all there and the doctor said that he should be moved to hospice.

On Saturday he was moved into a beautiful peaceful room in the hospice facility.   He was in pain and they were giving him pain medications.   He couldn’t talk, he was trying, he was scared.  Jackie and I had to go back to the house, which was about an hour north of the facility to get  the living will and power of attorney paperwork.  On the way back, we got a call that my father passed away.  I never really got to see him again since my move to Texas.   He did have us all together again for Easter, but not how it was planned.

So… sorry for the distraction, I’m not sure how I got there, but this is about my mother, not my father.    We were somehow very close but always at odds with each other.   My mother grew up in an abusive home, so maybe she really just didn’t know how to be a good mother.  I sometimes wonder how different things would have been if she had a normal childhood.

When we moved to Texas, my mother still lived in NJ, just a few blocks away from my brother, Jamie, the oldest of her sons.   Jamie, to her, was like a young Walt (my dad).  She adored Jamie.  Glenn and Jackie lived in Pennsylvania, in the Poconos, about a 2 hour ride from the Emerson/Westwood area.

My mother and Bob lived in an apartment in Washington Twp., a basement apartment.   She drove everywhere and was still somewhat capable and independent but she was getting more and more forgetful.  The details are escaping me now, but my brothers all decided to move her down here in Fort Worth.  From what I remember, her landlord wanted the apartment for family members and they had to move .. or maybe my brothers just wanted her to move.  So I had to find a place for them here in Texas, a senior apartment complex for people over age 55 and they provided transportation to Wal-Mart every week.   They no longer had a car,  Jamie gave her car to his stepdaughter just before they moved.

So in May of 2010, my brothers moved her here and now she was mine to take care of.   The move to her was traumatic.  She didn’t want to move, she loved NJ and she loved the idea of being close to my brothers even though she hardly saw them.  Now she was in a place that she didn’t want to be.  Her dementia seemed to get a bit worse.  She lost the bridge for her teeth, somewhere during the move.   So when she moved here, I took her to a dentist and her teeth were so bad that she needed teeth pulled and dentures, which really did not help her mood or situation, but it had to be done.   It seems that the reason her bridge fell out was because there was nothing left for it to hold on to.   This whole thing was also traumatic to her.   She fought with me and Bob  for months because she hated it here so much.  She was threatening suicide, so I mentioned it to the doctor and they put her on anti-depressants.  I always took them to the doctor’s, they couldn’t drive and they also needed someone to help communicate with the doctor because neither one of them could think clearly enough.   The anti-depressants helped and they were happy enough in their little apartment.

I was their transportation for the most part but they did live a somewhat independent life in their apartment complex.   They had friends, and they went food shopping on their own on the bus provided by their complex with their friends that lived there.     They had a nice balcony in their apartment and loved sitting out there for cocktails.

So then in August of 2011, our daughter was getting married.  There was so much to do, as there always is with weddings, and the Monday before her wedding, I got a call from Bob that he’s in bed and can’t move.  (A little background on Bob, I’m not sure what year, but in his early 50’s he had a stroke.  He lost use of his right side, he can walk with a cane, but his right arm is atrophied and he has little use of his right leg, other than to sort of balance for walking.  Something also happened to his brain and he could not longer think or speak clearly).  So I told him to call 911 and I would be there as soon as I could.   The medics came and brought him to the hospital.  He ended up in the hospital for about a month.  My mother couldn’t function, she was depressed about Bob not being around.   She stayed with us during the week of the wedding, but then she wanted to go home.   I couldn’t allow her to go there alone, so I tried to hire an aide to be there for her when she woke up and when she went to bed and to make sure that she took here medications.  I would go over during the days to help her and bring here to my house so she wasn’t alone all day, but she slept in her apartment.

The aide was very expensive and we wouldn’t keep it up.  My mother would sleep in her apartment with the door wide open hoping that Bob would come home.  I would get over there first thing in the morning to help her.  After awhile I realized that she could no longer live alone.   I talked with the doctor about this and Bob needed to be in a nursing facility also,  he could no longer take care of himself and my mother surely couldn’t take care of him.   Her was in a rehab facility which could have taken both of them, but I wanted to find someplace nicer, something a little more homey for them. Neither one of them could care for themselves anymore.   The doctor made some recommendations, they had to go on Medicaid because they didn’t have a lot of money, but I did find a nice enough place, the Cityview Care Center in Fort Worth.   I set everything  up and  told her that she would be moving back  with Bob but into a new apartment. She was excited… it was something new, and she would be back with Bob.

My mom and Bob at the Cityview Care Center

My mom and Bob at the Cityview Care Center

She was excited, kind of like a little kid moving onto something new.    Their room was big and had a full bathroom.   She liked it in the beginning, but then she started to want to go back to her apartment.   They were at Cityview for about  3 years.  They liked the people, it was not a lockdown facility so they were able to come and go as they pleased around the building, as long as someone knew where they were..    Around September 2014, the administrators at Cityview were starting to feel uncomfortable with my mother going outside.   She liked to go out, she has always liked being outside, but there was a new administration in the building and they were very uncomfortable with her going outside.    I had many talks with them over the next two months and told them that a move would set her back dramatically.  I thought my talk worked and they were going to try to work with me on it, but then the day before Halloween, 2014, I received a phone call from the social worker that they wanted my mother out because she was a flight risk and they found her outside in the parking lot.   I went to the facility and spoke with the social worker, trying to see if there was some way to keep them there  but there wasn’t.  She set up a meeting with the admissions director at a brand new place (just recently built), called Mira Vista Court for 9am the following morning.   Doris took me on a tour of the facility.   Supposedly Mira Vista was a secured unit, not lockdown.   it was explained to me that secured was not as secure as lockdown, but the entry and exit doors were all locked so she could not get out.   The building was very nice and I liked the people.   They had a nice courtyard with a gazebo and pretty landscaping in the center of the building where my mother could go outside and not be an escape risk.     It was very well-known that she would try to go out, sometimes the reason was that she wanted to go back to New Jersey to live.

I approved the new facility, and as it turned out, Cityview wanted them out and in the new facility  that day.  I really had no say in the matter, so I had to move both of them into the new place that afternoon, they were there and moved in by 1:30pm.   I had to lie to my mother again, to tell her that she was moving into a nice new apartment.    She was excited until she got there and realized that she wasn’t going back home.    At this point, she didn’t even know where home was anymore.   Bob knew what was going on and he was sad to leave Cityview too, but he understood and he wanted to move with her.
I bought some nice new bedding for them and a stuffed animal for my mom and some crayons, paper and coloring book.  Over the next few weeks my mother was miserable.  She hated it here, she wanted to go home, but again, she really didn’t even know where home was anymore, she just knew that she wanted to go back there.    She slowly became acclimated to her new place and would ride around there in her wheelchair the same way she did at Cityview.

My husband, Tom and I would bring them over to out house every week for dinner, or sometimes go out to dinner.   My mother was getting worse though, she no longer knew if I was her daughter, her mother, her sister, or someone who owned the building she was in.   She did know though, that I was somehow connected to her.   She sometimes forgot my name, but if I asked her my name, she would sometimes sing the song, Laura (my father named me after the theme song,for the old movie, Laura.  The story was that one night they went to see Mel Torme in Fort Lee, NJ and he sang the song Laura for them at my father’s request before I was born.)

She would go in and out of moods and sometimes hate the people at Mira Vista and think that they were all against her, but for the most part she was always pleasant to them.  I never had bad reports on her though, she was always well liked there, her complaints were really only to me and Bob.

I guess it was around a month or more ago, the social worker at Mira Vista emailed me and told me that my mother was becoming a problem.  She was trying to get out and would not be easily redirected.  They would help me find a place… I didn’t understand any of this because I have gotten only good reports from everyone there.   I talked with one of the weekend nurses and told her what was going on and she had no idea that they were trying to get my mother out.  She said that they even had a meeting two days before about residents that were a problem and my mother’s name never came up.  She said that my mother was very easily redirected.

I was communicating with the social worker for days now, and I tried to explain that another move would set her back.  The social worker went on to say that she needs to be in a lockdown facility because of her trying to escape.  She really is not trying to escape, she does go to the door but she’s never created a problem that anyone has ever told me.   I do know that she gave Bob a hard time, and sometimes she even forgot who he was, but like me, she knew he was connected to her.  Bob did get the brunt of most of her moods, but she was pleasant to everyone else.

The social worker at Mira Vista explained that Mira Vista is not a secured unit and they can’t take the chance of her getting out.  I told them that I was told on admittance between both Cityview and Mira Vista that this place was secured, I was fully aware from them that it was not a lockdown unit.  They accepted my mother, fully knowing that she liked to go out of the doors, but again, here in Mira Vista, the doors are locked and only opened with a code, going both inside and outside.

I contacted their Medicaid attorney to see what I could do, and I found out that they cannot move her out of a facility without official notification (which I did not get) and then after the notification letter, there is a 30 day time period for her to move out…. UNLESS… there is problem and then they can move her immediately.

Well, I was beside myself for the few weeks that this was going on, I cried and cried, I just could not move her again.  It’s cruel and so wrong to do to a human being, let alone my mother!   Even though she was not a good mother to me, I could not do the same to her.   I was depressed and really had no idea what to do or who to turn to.   Finally when I called the lawyer they did help me to start looking around at places.  This way when it happened, I would be prepared and they would be someplace that I selected, not just thrown into another facility because they just couldn’t handle her.   It was explained to me that lockdown is a term that’s never used anymore, they call it secured.   I was a mess over all of this, I don’t ever want my life in someone else’s hands!   I had no choice in the decisions I was making, but I just thought it was so unfair and how could I do this to my mother!

On June 18, I started looking at places, the attorney’s Medicaid specialist gave me a list of places to visit where both my mother and Bob could go together.  But with it being lockdown, Bob would probably  not be in the same room, but the same facility.

I set up appointments in 4 facilities June 18th. I went to the first one in Keller (too far for me, but if it was nice, I would send them there), and while I was there I received a call from the nurse at Mira Vista that my mother was hitting Bob with rocks from the courtyard, and then when a nurse tried to intervene, my mother threw a glass at her.  Well, this was the exception that would allow them to move my mother out immediately.    I didn’t know what to do, I talked to Bob and he confirmed that this was true.   Mira Vista told me that they had a place they could send her to tomorrow, June 19th.  I just about lost it on the phone, how can I do this?  I told them that I was looking at places and how can I tell her that she has to be out tomorrow!    I just couldn’t do this to her again.  I talked to Bob again, he wanted to stay, he didn’t want to move.  Mira Vista was ok with that, so now it was just a place for my mother.   Now, how could I tell her that she was moving without Bob?  This was all just a nightmare to me!   My insides were a mess from all of this, my life just was not my own anymore.  I hated having to do what I had to do to my mother, no matter how she was to me  as a mother.   She was like a child now…. she doesn’t remember anything, she feels at one with the clouds and trees, she doesn’t remember family members, she only remembers my brothers if I say their names, sometimes she doesn’t know if she has any children.   She gets confused, she doesn’t know how to use a fork or knife or sometimes even how to eat food.  She wears about maybe 6 or more shirts and sweaters, a few pairs of pants, shoes not he wrong feet… she just doesn’t know.  She goes to bed in those clothes, she doesn’t understand why she has to wear pajamas to sleep.   She has become a bit of a kleptomaniac, she takes anything she sees, whether it’s her s or not, whether she needs it or not, or even if she doesn’t know what it is, and she keeps them.   She would lift medical reports from the nurses and keep them, but Bob would take them and return them.   She takes dishes and flatware and puts them on the seat of her wheelchair and sits on them, not knowing that she’s sitting on them.  She doesn’t know where she is or why she’s there, but she does know that she doesn’t want to be there, she wants to go home.

So back to June 18th, while I was talking with the nurse at Mira Vista, I took the address of the place that they recommended.   First I visited the rest on my list.   One of them was like a visit to Gravestone in the 1950’s… there was no way I could send her there.   It was very old, cold looking and just people wandering all over the place.   The administration seemed very nice, but I just could not put her there.   I finally went to the last one, which was the one that Mira Vista recommended.   When I got there and told the receptionist that I had an appointment, I just broke down crying.  They didn’t know what to do with me, but they were all very nice.  I managed it compose myself and toured the building.  It looked like a hospital, but they all did.  There was nothing homey about any of them and I had to make a choice, they were moving my mother out the next day. So I decided on this one, The Courtyards of Fort Worth.    I really like the people here.

So I told Mira Vista what I selected and the next morning I had to visit my mom and tell her she was moving.  I had to tell her more lies… I told her she was moving and she was very excited.  I also told her that Bob could not move with her because he had medical treatments he had to get done… another lie, but how else could I tell her that he wasn’t going?  I spent the morning with her, wheeling her around in her wheelchair, we sang “The People In The Bus Go Up and Down” because she was going to be leaving in a van for her new home.   We had fun being silly, we don’t have normal conversations anymore, we just do silly talk.  There was a pile of big boxes from a delivery in the hall, she asked me to stop by them so she should take them and put them in her lap.  I asked her why, and she said they were for me.  I told her that I don’t need them, and we just moved on.   Mira Vista was sending her in their van with an aide which made it so much easier on me.  I wasn’t there when she left and I didn’t go visit her until Monday.  I wanted her to get a little bit used to the new place.

Bob stayed at Mira Vista and they promised that they wouldn’t put someone in his room for about a week or so so he could get used to his new life.   Now I have two places to take care of instead of them being together, I need to divide myself and my time between them.

When I visited my mother the first day, she was clean and she was only wearing one set of clothes.  I brought her some new clothes, some new shoes, some colorful things to hang on her wall and some other things that she needed.   She wanted to know how she got there and why can’t she go back home.   She wanted to know where she was.   I left there so torn up inside, how could I have done this to her?  I had no choice.  She wanted to come with me and stay with me, but she can’t.  It wouldn’t be safe for her in my house, and I would also be afraid of her opening the doors and letting the dogs out in the front and then I’d never see them again, I was afraid that she would go out back and fall in the pool… or when I’m not home, she would just wander off.  Staying with me was not an option, but it was something that was making me feel horrible about.

She has been there now for about a month.   She’s not happy, she wants to leave but she can’t.    She goes in and out of being like a child and being angry.    It’s kind of funny, because when she’s angry, she knows my name, when she’s childlike, she just knows that I’m connected to her.   She’s not settling in, as time goes on, she seems to want to get out even more.  I would like to take her out for an outing, but I’m also afraid that I won’t be able to get her back in.   When I visit we sit outside and the conversation consists of, “how can I get out of here?”.   That’s pretty much it.   I don’t know what will happen.  Bob is in Mira Vista and he misses her but he also knows how she is.  I took him once to visit her and she was in heaven, but then after he left, she got angry and wanted to get out even more.

I used to go every single day to see her, but I just can’t keep up that pace anymore, so I’m slowly making less visits.  She doesn’t really understand time anymore anyway.

I’m not sure if she has Alzheimer’s or if it’s just dementia, but it really doesn’t matter.   She’s not herself anymore.  She’s not happy and that makes me very sad.   I’ll just keep going and I’m going to wean myself down to once or twice a week.  I have to take care of both her and Bob, so I have two facilities to visit and Bob likes to go out every so often.   Bob’s right side is paralyzed from a stroke, so he’s not very mobile, but he can get around (although last night he fell and we spent 4 hours int he emergency room, he has a sprained shoulder and pinkie finger, and he had to get 12 stitches in his hand).    I just want to get away but I can’t.

Anyway, thanks for any of you who may read this…  this is what my life has been for the past couple of months and what it will be in the coming months.  Dementia is a horrible disease and any of you that have witnessed it can probably relate to some of this.

Laura