Grandma Where Have You Been?

Late in 2013 my mother took a fall one morning and broke her hip.  That would lead to a cold hospital stay in downtown Fort Worth, sleet, snow and ice.  I remember staying in my mother’s room overnight each night as she needed monitoring.  The only place to sleep was directly on the cold concrete linoleum floor right next to a window where the cold from the winter storm pounded on the pane.  That week I stayed awake for a total of 38 hours straight  My mother was confused and helpless.  We were lucky to get a very good orthopedic surgeon that same evening to operate on my 86 year old mother and provide her with a prosthetic hip.

We knew that one day this would happen and happen it did.  She was no longer able to stay at home.  Doctor said she would have to be in 24 hour care.  That meant nursing home.  Woe is me.  We did not know what we were about to embark upon.

So I journeyed in the daytime looking for that perfect place.  She would be transferred only after about a 5 day stay.  Looked at one as close as I could find that was recommended by one of the nurses on the hospital hall.  For this story, I will call it “The Scarisson.”  That is because it was a nightmare.  Looked like the Hilton inside and out.  Beautiful hallways, courtyard, special beauty shop, hotel luxury looking dining room.  But then, shortly you would find out that there were 15 patients to 1 caregiver.  You would be met by different people all the time.  They rushed to get the job done and left everything in a mess.

I was told by the elder attorney I had hired years before to be at the nursing center every single day and different times of the day and check on her and make sure things are going right.  It was much harder than I ever suspected.

At this first place, we were there only 2 months.  In that time, my mother had fallen and dislocated her hip twice!  Once in middle of the day.  Another time at 4 a.m in the morning.  The last time I had been begging for them to provide my mother with a UTI test (urinary tract infection) as she was getting sicker and sicker and I was so concerned.  It was another cold wintry night when I was awakened by a call from this home to tell me she was on her way to the hospital, that she had fallen.  I stated to them “this is the end of the Scarrison”.  It was found she had e-coli bladder infection, was out of her head and tried to get up on her own and fell at 4:00 a.m.  She dislocated her hip for the 2nd time and it was super painful.

There were things I liked about this place.  It had some nice amenities.  But the rooms were small and only enough space to fit two twin sized beds.  Elbow to Elbow with another resident.  I do not even recall who that was right now.  She may have still been in the private room, but I doubt it.  I just remembered begging for this test and being in tears at their front desk late one night —- the night I was called at 4:00 a.m.  Mom got through it like a trooper.  It was another time I did not expect her to make it.  She did.

So, now, where do we go?  another nurse recommended one that we will call “Unspeakable Health Care”.  This one too looked very nice, had the same accommodations and we were assigned a roommate.  Aside from the roommate hogging the best side of the room and all the space there was in the shared bathroom, it was okay.  My mom was not talking much anyway.  The food was better here.  The same confusion was there with caregivers  rushing in and rushing out.  She was left in many peculiar situations.  Alone a lot of the day.  I was there taking her to her dining room twice per day.  Also, I washed all of her clothing.  Did not want to go looking for it.  There was no time for that.  Nor did I want to have to keep shopping for her new clothing.

The original roommate moved next door when one of the residents passed away and was able to keep that room to herself for sometime.  Then my mother got a special roommate, Stella, who was 94 years of age and in good shape mentally and could get around well.  Still only about 6 inches between mom’s bed and her roommate.  Not much floor space at all.  Just enough to run the wheel chair in and out, get to bed and get out of bed.  Thankfully, this place had lots of space and interesting things to see in its hallways and a wonderful courtyard.  But, there again, 1 caregiver to 15.  Not much care.  Had a shower girl who did all the showers M-F and she was very good.  I  felt safe with my mother there getting her shower.  Again, was there every single day twice per day, even if it was only for 30 minutes, but most of the time it was more.

We enjoyed our new friend Stella and delighted meeting her family and friends that came through.  She was popular.  All was pretty good in this place, although there was a time or two she fell and plenty of times with urinary tract infections.  You will learn that no one tries to see that your parent eats or drinks water.  You are lucky if they get to them to take to the potty every 3 hours.  At that time, my mother could wear pull ups and was almost continent.  Still, there were many times she would have quite a mess to clean up and then would get sick.

But all in all, I liked it there.  After a while they changed administrators.  The new one was a single older male that smoked as I recall.  Most of the nurses and aids all smoked.  This is a common thread in this industry.  But when the new admin came into town, things began to go down hill.  Eventually I would have to take my mother out of there at night in 35 degree weather home after calling a lawyer and getting advise.  They were using the residents that had urinary tract infections to label them ‘infectious’ and then move them to an isolation ward.  My mother has dementia which is a type of Ahlziemers disease.  She had doctors orders she could not be isolated or catheterized.  She would pull the catheter out and it would make her dementia much worse.  It is known you can never change things on an ahlziemers’ patient.  They need the same surroundings with familiar pictures and things all the time to keep them settled and secure.  Take them out of their environment and stick them in a room with blank walls, new people and no familiar things and they would get much worse.  So, one night I was literally ambushed by this admin and his ADN (assistant director of nursing).  They were going to put my mother in isolation and put her on a catheter because they said she was infectious!  A complete lie.  They had already taken steps to take her 94-year-old roommate out of her room late that night packing her up in her gown and wet hair!  Needless to say Stella was upset.  But Stella did not know any better nor her daughter.  They thought they ‘had’ to do what  they were told.

Well, after I called the attorney, I packed my mother up and put her in my SUV along with her wheel chair and took her back to her own home.  It was hard.  I had no idea what I would do in the morning.  She slept with me on one of the trundle twin beds.  She was stiff and hard to move her.  Afraid because not sure what was going on.

The  next morning I managed to get her cleaned up and dressed and I remembered I had put her name on a list at another nursing home that I had personal recommendations.  These recommendations were from church friends.  It was good.  I called and they had room.  I took her right over there.  She has been there now for almost 3 years!  Not without incidents, but nothing like what we had suffered before.

At least this one will listen to you when you have a complaint and abusive people are fired.  I put a camera up in my mother’s room last October 2016.  Since that time her care has been much better because I can monitor it from my phone anywhere I am.

I still go over there every day, but now she has a single room, nice shuttered window with live plants, her own 5 gallon water drinking machine, food bar, private bath and the color green is all around her (her favorite).  So much better, but still a daily struggle to keep good help, watch for bruises and abusive people, watch her food intake and her water intake and keep her clean.

Recently I was called to come to my mother’s nursing home early one morning.  They said she was not talking, not moving and may need to go to the hospital.  I told them to call the hospital we have always used but they would not do it until I got there.  Upon arrival I could quickly see my mom looked as if she was dying.  She was laying on her bed turned to her side and staring, not speaking.  She could say some things but not much and I just knew she was dying.  I called my husband and he came up there while I cried waiting for the ambulance.  I packed up things she would need and followed closely to the hospital 30 to 40 minutes away.  She would get the best of care there as always.

Well it was busy as usual in the ER at Harris downtown Forth Worth, Texas, and by now they should know my mother and I as we have been here at least 20 times over the past 3 years or more.  I have lost count.  Unfortunately, most of those times were for urinary tract infections.  I found out early that after age 75 they say you cannot feel it if you get a urinary tract infection and as you get older it is a common thing.  It affects mood and state of mind and easy to spot from that with her.  So here we were again, but this time was the worst I have ever seen and I have seen some bad ones with her.  I really was not sure what I was going to hear.  She was almost like in a coma.  Eyes glazed.  She wanted to sleep all the time.  She was babbling when trying to talk.  We were taken care of pretty quickly.  They did a ‘in and out’ on her and found right away she had a sever urinary tract infection.  This one was from a bacteria she has never had before.  It was called pseudomodus.  I was told it was super bad, and it was.  She was hurting, she had no energy and wanted to sleep all the time.  I could only get her to stay awake long enough to eat.  She had to be spoon fed. This was all new.  She usually was quite apt at feeding herself and choosing if she wanted to eat the food or not.  Not so much now.  I was there to feed her lunch and dinner most of the time and also sometimes the breakfast.

So, they had her stay overnight in the ER because there were no rooms available.  We love this hospital and know how extremely competent they are and well-managed that it why it was not bad to wait.  I went home to get some sleep and they moved her sometime between midnight and in the morning.  I came back to find her in a room in an area called “palliative care”.  I learned that the name was for the patients that were not on hospice, but getting prepared to be.  This floor looked like a cross between a hospice center, chapel and funeral home.  I noticed that they did not have nurses stations ever so many rooms, but instead were only a few located at the nurses desk at the end of the hall.  I did not like that.  When I needed them it was hard to get them.

They said it had nothing to do with her status, but that was what was available.  Okay.  We can live with it.  Well, Mom was not crazy about their food and so I made the, traditional by now, trip down to the cafeteria and picked out some foods she liked.  It was about 2000 steps for me there and back.  Whew! nothing more draining than being at the hospital.  You have all the physical things you need to do and at the same time your emotions are in toll.

So, I would clean her up and feed her like she was a baby.  She had no ability to do that now.  She was on a drip for this onerous bacteria for 6 days.  She went straight to sleep after taking her last bite of food each time.

Now we are down to very soft foods to get her to eat.  So, I would stay there a while and then leave and do some errands and try to get some work done and then return for the next meal.  I would get home every night around 8:00, 8:30 and sometimes later.

My commercial customers for my fiberglass fencing business were calling and I was getting out quotes to them as I was sitting in the hospital room wondering if mom was going to make it.  Always on edge.

So, still weak, unable to stand and sleeping and slurring her speech, the doctor came in that was on call for her at the hospital and said she is not longer testing for that bacteria and he was going to dismiss her.  I was very surprised he was doing that.  she was very weak and hardly ever awake, but he did dismiss her.  Back to this nursing home and I was sure to tell them that this ominous bacteria which is usually transferred by hands, comes to you because of improper cleaning and changing.  She was left in too many urinated briefs for too long.   Some 8 to 9 weeks later I would learn from my mother’s own internist that the bacteria was what you would find in standing water, like swamp water.

Well, this whole ordeal this time would take her down one more large notch.   Now she would not be able to stand to get into her wheelchair, not be able to go to the potty or wash her hands in the sink, would be very tired a lot of the time, would slur her speech from time to time and her memory would get much worse.  Surprisingly, her appetite would not.   She was eating well.  There was a loss of weight, appreciably and she is small.   So, I was sitting in the doctor’s office with her and he was talking about her status and what to expect.  She fell asleep and did not hear a word he said. He listened to her heart and she was fine.  Now I am told she is quite normal for this stage of her life and disease.  She would now lose more weight and her blood pressure would normalize.  It had skyrocketed with this illness.  She must have really been hurting, but with her mental condition, could not express it.

He said she would lose her appetite and not want to eat.  Don’t put her on a tube. I  told him I would not.  This is the last stage of her ahlzeimers.   No one knows how long this stage will be, but she is changing probably 20 percent every week or so.  It hurts to turn over or move at all.  It hurts to change her clothing.  It disturbs her immensely to try to get near her face and get her dentures to clean them and brush her teeth.  Its gotten almost impossible to take out her dentures.  As soon as you get close to her with your finger she starts screaming.

So I am forced to let her go except for brushing her teeth for several days before forcing her to let me take out her teeth.  Just have to trick her.  She knows she is doing  this and feels bad about it but will tell you she cannot help it.  She has a nervous condition and her eyes are getting worse about perceiving things closer than they really are.

I am there now minimum of 2 hours on average per visit.  I do everything there is to do for her during that time and get the room clean and in order, smelling good and fresh clothes layed out for the next day, water on her table, disinfect surfaces, wash hands and face and put on lotion before I go.

I can watch her on my phone but now they are actually getting someone to help her with eating her lunch and that takes a huge load off of me.  I usually get there early afternoon and leave around 7:00 p.m. if the night is going well.

There are other families that take care of their loved ones as well and it’s really tough to do.  Seeing them going down, dying slowly, is such an emotional drain.  But knowing that they smile and are happy when you are there is uplifting and gives you a continued sense of purpose.  I have actually drawn closer to my mother in these failing years.  Would not have it any other way.

I have learned so much taking care of her in this environment that I will be passing on the information and will be doing something to improve what I have seen throughout the three nursing homes she has been in thus far.  Right now its just keeping my energy level up and pacing myself as I have a job and work every day also.  There is lots of balancing to do, but someday it will be over and I will rest easy knowing I did everything I could possibly do to make her feel safe, secure and well cared for in her frail condition, but most of all loved.

The attention alone would make her want to live and her days much more meaningful.  I sincerely hate it when I see the majority of the residents in nursing homes left there to suffer and fend for themselves.  No advocates for them.  This system needs a complete overhaul, but for now must work within it the best possible way we can and that means sacrifice daily.


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