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Ok, so this morning I went to visit my mom in the nursing home.   I moved her on election day (I only mention that because it’s an easy way to remember the day I moved her) from her old place, Trinity Healthcare, back to the Cityview Care Center where she first started out in a nursing home back in 2011.

In 2013 on Halloween, Cityview had me move her out because she was an escape risk.    My mom has dementia/Alzheimers and at the time, Cityview did not have any secured units.    So in one day, I had to find a new place for her, which ended up being Mira Vista.  Mira Vista was brand new and I was assured that the reason they were moving her there was because  it was a secured facility.  They had keypads on all of the doors to enter and exit.   Well… as it turned out, they didn’t want her either.   So in June of 2015, Mira Vista wanted her out because, again, she was an escape risk.   These places don’t give much notice.  It’s state law that they have to give 30 days, unless, there’s some reason not to, and they always find a reason why there has to be a move.

I can’t even describe how I felt and how I was ever going to find a place for her in one day. This was a Thursday.  I looked all over, and to make this short, I ended up at The Courtyards, in White Settlement.   When I got there, I just broke down, how could I make this decision in just one day?   They were so nice and so caring there,  It was not a pretty place, but I liked the staff, so I chose to send her there.  The next day they moved her.  It was a locked unit, they kept the women in separate wings than the men.  I left her husband, Bob, back at Mira Vista for the time being.

The Courtyards Nursing home was nice enough, the people, not the place.  The first month that she was there, though, another resident pushed her out of her wheelchair and she fractured her hip.  She had to go to the hospital and had a pin put in.   After that, she was never the same.  The dementia seemed to have progressed.

In January, The Courtyards sold out to Trinity Healthcare.  Everything changed, the people were gone and new people came in. I was having a lot of problems with Medicaid and the billing department at Mira Vista, so to make a long story short, I moved Bob into Trinity Healthcare with my mom, but in a different wing, since he did not need lockdown (aka secured unit).   As the year went on (2016), Trinity had about four different Administrators, the Billing Dept. had about 3-4 changes of people, the nurses and other staff  from Courtyards that were so caring were moved out and new ones moved in. By October everything was so different, the staff was not caring the way they used to be and for the most part very inaccessible.  There were so many problems, that I finally decided to move them again, something that I wished I wouldn’t have to do again.

Moving nursing home residents takes a toll on them, even if the place is not perfect.  I found out that Cityview (the first place they were in), now has a secured Memory Care Unit.  I went to visit and it was like going back home.  The same staff that was there back in 2013 is still there.   That spoke volumes to me.    They also remembered my mom and Bob (and me) and were so happy they were returning.  Thankfully, they had openings in both the Memory Care unit for my mom, and the regular wing for her husband.

So, on election day I moved them.

Cityview’s Memory Care Unit is brand new, only a few months old.  It’s very pretty, bright, cheery, and they have a lot of activities to keep the residents busy and happy enough.   Trinity Healthcare, was pretty much like the walking dead, they did nothing at all to keep the residents happy.  The residents would stay in the main room, and the staff barely did anything with them.  There were very few activities, the only activity I ever saw was Friday afternoon Karaoke.   Other than that, they just existed.   It took my mom a couple of days to return to her normal mood, but she seemed happy and content enough.

Then, two Sundays ago, I received a call that she fell and bruised her face, the call was about 6:30 am, and this happened about 1:30 am.  They said that they checked her and there was no sign of any broken bones, just a bad bruise.  So I went to see her that evening (I couldn’t get there during the day), and the bruise was very scary.

I went back the next day, Monday, and talked with the nurse again and they were going to check into it further.  Well, by Tuesday, the bruise was very bad and her whole demeanor went downhill so quickly.   I got there early on Tuesday afternoon and she wasn’t responsive at all.  The doctor came in and said that she’s got to go for a CT scan at the hospital.  What happened, was that she fell out of bed and that was the second fall out of bed that she had within a few days, and they have noticed a decline in her responsiveness.

The head nurse came in and told me that I should consider hospice for her.  Well, I just broke down, hospice to me, was just a death sentence.  I had a talk with the hospice nurse and she made me understand a little more about it.   Later on someone else came in to talk to me more about hospice and  the three of us talked about what they do.  I was feeling more comfortable with the idea of it.  While we were talking the ambulance arrived to take my mom to the hospital.

Something I didn’t know is that hospice isn’t a death sentence, (although, I guess in a sense, life is ultimately a death sentence), but of course, it’s only for those that are seriously ill.    They have more checks and balances than the nursing home and they work with them.   She will stay at Cityview, it’s fully covered by Medicaid.  Hospice will have their nurses and aides coming in to check in her, stay with her, develop a relationship with her, bathe her and just spend time with her.   She will still also be under the care of the Cityview staff and they work together with hospice.    Hospice sometimes brings in their own beds and other things they will bring In a better wheel chair that reclines, so if she falls asleep sitting, she can lay back..   They will not force her to take huge vitamins that she can’t swallow, some of the meds will be stopped … one is Aricept which  is a drug to slow the progress of Alzheimer’s, it’s already there, so slowing it down at this point doesn’t matter.  The other is Plavix, that is a blood thinner and can be part of the reason why her bruise is so bad.   They also will take her off of synthroid, she’s on a very low dosage for her thyroid…  I can put her back on that and Medicaid and the nursing home will cover that, if we feel she needs it.   She will stay on all quality of life meds and if necessary they will increase the ativan (anti-anxiety medicine) if necessary.

They allow their patients to eat whatever they want, if they want something that’s not on their diet.    They have people that have actually improved while being on hospice, of course that’s dependent upon the person and their medical condition.  If they need it at the end, they will have someone with them 24 hrs a day at their bedside.  She will stay at Cityview instead of another facility.    If they need her to be transferred somewhere else, the same hospice nurses and aides that she is familiar with will stay with her.

So it’s all about quality of life.  On Wednesday I went back to talk more with hospice.   I signed the papers and it should start on Wednesday.

So at first, the suggestion of hospice to me was a death sentence and I questioned why, but now that I know more about it, it’s the way it should be.  She will have twice the amount of care now because the nursing home has to answer to them and to me instead of just me.    They also have a very good relationship with the Cityview staff which helps.

I did bring Bob in to tell him and he was ok with it… I wanted him to stay and talk with hospice too but he wasn’t interested.  I felt the need though, to make sure that I asked him, even though I already made the decision.

The hospital kept her longer than I expected, it turned out that she has a UTI (Urinary Tract Infection) which can be very serious and even fatal in dementia patients.

On Thursday, Tom (my husband)  and I went to visit her at the hospital.  To me she looked almost like my father did the day before he died (he died of sepsis which can be the result of a UTI).    It’s the UTI that is making her sick and I guess it’s good, in a sense, that she fell because it made them check for the UTI.   At the hospital, she didn’t know me at all, but she wouldn’t let go of my hand.   Her face is all bruised but no actual damage.

When I left there, I just didn’t know if she would make it, maybe she would, but Thursday  night, she had that look that my father had at the end.  She’s scared, I can see it in her eyes.   She has tears in her eyes. She was very shaky and scared to death.

I never realized how dangerous a UTI is with the aged and especially dementia patients..   I thought it was just a urinary infection, but that infection can poison your whole body.

I spent Friday with hospice and the nurse at the nursing home (Cityview).   They made me feel so much better.  Then on Saturday, I went to her room and decorated a small Christmas tree for when she returned.   I spent about two hours in her room, it felt comfortable to me, as if I was in her home. I just wanted to hang out there. I would like to bring some music in for her, but not sure how yet.   Radio really doesn’t exist anymore and she can’t change CD’s.   While I was decorating the tree, a couple of residents would come in and chat, Stella came in (my good old friend…she thinks she knows me and I play along with her, she’s a nice lady), she told me that pink isn’t her color, but she was wearing the pink pants anyway, I told her they looked nice.   She hugged me and told me that she loves me (she does this to everyone.. lol), she liked the tree, I asked her if she was ready for Christmas and she shook her head and had to go on her way… I anm not sure why she’s there, probably dementia, but she’s fun.

One man was singing and walking down the hall, he stuck his head in and we small chatted for a minute.

Then an aide came in, he seems very caring and loves his job.   He told me that my mother tosses and turns a lot in bed so he checks in on her often.   He wasn’t there the night that this happened, but he said that you can’t just leave someone like her alone for long without checking on them.   It seems to me that the staff is all questioning how this happened, probably not abuse, but maybe they didn’t check her enough.  Anyway, I love the staff here and for the most part, they really are on top of everything.

Sunday, I went to wait for my mother, she was supposed to return to Cityview.  Stella  didn’t know who I was this time, I guess that’s why she’s there, but she was still happy to see me and still had her pink pants on.  I was cooking tomato sauce on the stove, so I couldn’t wait for too long, I had to get back home to finish cooking.    I’m glad I went though because the low bed  that they were supposed to bring for her, was not there and I had to make sure they had it there before she came.   When I left it still wasn’t there, but they were working on it.

Bob called a little later, he said he saw her and he said she was doing better than the last time he saw her.  The hospice nurse called (after we finished dinner) and she needed for me to sign something, she was on her way so I had to run over and meet her there.  When I got there, two aides were trying to calm her down.   She was very agitated and scared.    She started crying out loud.    She eventually would calm down and then get up and try to get away and off of the bed.. she couldn’t relax.   She knew me… sort of.   Thankfully, she was in the low bed, it came just before she arrived.

The hospice nurse, came and just stayed for a little bit. They are keeping my mother on the antibiotics and Ativan (anti-anxiety) meds.  Hospice thought that she should get a dose of Ativan to calm her down and help her sleep.   I made sure that they would keep the door open during the night and check on her.  She’s on the 15 minute check schedule now, for the normal residents it’s every 2 hrs,

After seeing her, I felt that this was the end.   She was not good at all.  It’s odd, her left eye is clear blue, not brown anymore.  I don’t know what that means but it’s odd.   Hospice was going back again the next day (Sunday) and if she’s very agitated again they will give her 24 hr bedside.  So I started thinking that hospice really  is a death sentence.

If she stays agitated they will give her morphine for pain and her other symptoms.   Once they start with morphine, that’s pretty much it.  Of course there’s always a chance she could recover, but I seriously doubt it.  So now I know how I will react when she dies… I’m sad and I cry a lot.  I don’t want her to go, but I think she has to.  I have done all I could for her and not all of it was good.   I probably left her at Trinity too long, but I’m happy that she’s in a nice and caring place now.

So Sunday morning (this morning) I went back to visit her.  She was sound asleep.  I sat with her for about an hour and played some Christmas music, she just slept.   I went back home and then returned again in the afternoon with Tom.  This time she was awake, she seemed so much better, much more responsive, she had a little sparkle in her eye and she (sort of) understood and could respond to what I said.  I played some Christmas music on my iPhone and that seemed to make her a little happier. She smiled a lot and seemed content.

I don’t know what tomorrow will bring, but I was happy for today.  I don’t know how long she will last, I don’t want her to suffer.   I will see how it goes with her for the next few days.

Most everything I do is on hold for now, it has to be.

Thanks for reading, this is, in a way, my little way of releasing what I’m going through with her.

Laura