The Seasoned Life

After three days in the hospital, Mother was becoming more like herself. She was feeling better and communicative.  The doctors were pleased with her progress and felt she could be ready to be released in a couple of days. St. David’s had an acute care rehabilitation hospital that had an excellent reputation, so I began working with the social worker to try to get Mom approved as an inpatient.

The rehab facility will send a representative to do an evaluation, as well as, review the medical records and previous therapy notes (if any).  I cannot stress enough how important it is that a family member attend these evaluations, especially if your loved one is a stroke victim.  These reps that perform the evaluations could be a head nurse, therapist, or another social worker.  They will put the prospective patient through a battery of tests and questions.  You want to make sure they get accurate information.

Since it was not an option to me for Mom to go back to that skilled nursing rehabilitation facility, I felt I had to be an advocate for Mom. A       week or so before she was hospitalized, I had tried to get her approved in a different acute care rehab facility that I had toured.  I was not present when she was evaluated. I was just informed by the therapists at her current facility that she had not been approved.  The acute rehab place based their decision solely on her records and her current condition (which at the time was not good).  I was determined to not let that happen again.  I requested to the social worker of the St. David’s rehab facility to please have the decision maker talk to me before they made a final decision.  They honored my request. I used every bit of my sales ability to convince them that Mom was capable of doing the work and did have obtainable goals.  She was approved!

She was transferred via ambulance two days later.  Due to the MRSA, she was still under restrictions.  All attendees, doctors, nurses, therapists, and visitors had to wear the protective garments.  She had been approved to stay the maximum allowed time which was about 3 weeks.  It was time to get to work and Mom said she was ready.  She was much more like herself. It was obvious she was happy to be there.  She liked her private room and she smiled and cracked jokes, which was such a relief to her family.

After a similar admission evaluation, the therapy began.  She was on a strict schedule of when she was to be up and dressed, ate meals, had speech therapy, occupational therapy, physical therapy, and rest.  She had at minimum of 3 hours of therapy per day.  I tried to be there for as many of her therapy sessions as possible.  This meant as much as 2 hours at the hospital some days, but I felt it was important. I could see her progress and what things the therapists were having Mom do.  She settled in and was responding to the therapy. She was able to stand and with the help of an aid, she could transfer from bed to chair without the need of a lift or second person.  She was communicating better and her accuracy was getting better than 50%.  She was even able to walk down the halls with the aid of a therapist pushing her still paralyzed right leg forward and shifting her weight to step with her left leg. Towards the end of her stay, she had undergone another swallow test and was approved to go back to a normal diet, with the exception of thickened liquids.

During the three weeks that she was in rehab, I had to start searching for a more permanent living situation for Mom.  I had been told about a gentleman who offered a service to people looking for long term care places.  He worked much like a real estate agent.  He would take you to tour facilities that were in the geographical area and assist in the decision process.  It was free to the client. The long term care facility paid him a referral fee.  I toured three different assisted living facilities and heard about their services and fees.  Mom had exhausted her threshold with Medicare for long term care, so she was going to be faced with a self pay situation.

The places I toured varied in cost.  One place, that had many less amenities, charged about $3500/mo. + prescriptions and incontinence fees.  A second place charged about $6000/mo. + prescriptions.  These were not private rooms and neither one offered any type of rehab services. The third place was new and was a “memory-care” assisted living facility. It was very impressive and boasted a ratio of 1 caregiver for every 3-5 residents.  They had on staff nurses and activity personnel.  While I was there, a dance troupe was performing in the main dining room.  The residents seemed to be enjoying themselves. They also had a therapy room and therapy services.  There were no private rooms available. I was told there was a long waiting list to get one.  A semi-private room cost $235/day + incontinence fees of $450/mo.  Prescriptions and doctor visits would be filed with insurance.  You could also sign up for in-house hair salon services, which would be extra.  Transportation to doctor’s offices or outings would be charged by the mile.  If you do the math, this added up to over $7500/mo. To top all of that, each place required a reservation fee of anywhere from $2000 to $4000 (non-refundable unless the patient was not approved).

I felt Mom would get the best care at the third place and enjoy the atmosphere and activity.  It was important to get her back into socializing. She had gotten used to isolating herself in her room or in bed for hours every day.  I signed the documents and paid her reservation fee in hopes that she would get approved.  There were some obstacles to overcome. Assisted living is different that a skilled nursing facility.  Even though they have caregivers and nurses, they only are allowed to do certain things.  Assisted living facilities have different regulations and less restrictions than skilled nursing facilities. Mom had to be completely off the feeding tube and eating on her own.  She had to be able to transfer without the aid of a lift. She had to be retested for MRSA to ensure it was no longer active.  Since it was a “memory care” facility (which means they cater to residents who suffer from alzheimer’s and dementia), she had to get approved due to her aphasia.  Since aphasia often leads to memory issues, it was likely to get approved.

The social worker and head nurse from the memory care assisted living facility worked with St. David’s Rehab in order to make sure Mother was capable of meeting the criteria.  A few days before her discharge from the acute rehab, Mom was approved.  The next post will tell the story of assisted living ………

One of things I have learned to trust is my instincts.  Customers have told me hundreds of times over the years that I must be psychic. I don’t believe that it is quite that powerful, but I do sense when patterns are disrupted. I also pay attention to nuances and small details.  I never doubted that Mother’s illness was serious.  The doctor’s at St. David’s confirmed that she needed to be hospitalized.

Once she was admitted and receiving treatment, I went back to SOS Skilled Nursing Facility (again, a fictitious name) and retrieved all of mother’s belongings.  I told them she would not be coming back. I had no idea how long she would be in the hospital, but I planned to use that time to get her accepted into an acute care rehabilitation facility.

When I returned the hospital the next day, I found a sign on the door to Mother’s room stating that the area required face masks, gloves, and protective gown before entering.  I was advised that Mother had tested positive for MRSA.* They explained that it was customary for this test to be ordered after someone was admitted from another hospital or skilled nursing facility.  It is taken very seriously in hospitals due to the fact that it can spread so easily.

The doctor also said that they were ordering another swallow test.  They suspected that the fluid in Mother’s lungs could have come from her aspirating her food and drink (it goes down the wrong path).  They also added that she had all kinds of issues that needed to be cleared up that included a third bladder infection, continued hemorrhoids, congestion that had built up in her mouth and throat, bed sores, and cracked skin on her legs and feet.

After a few days, Mother started feeling better; however, the results of her swallow test were not great.  She did show a tendency to pocket food on the side of her mouth that suffered from paralysis.  She was only correctly swallowing fluids sometimes.  This result caused them to come to the conclusion that her pneumonia most likely was brought on by her aspirating her fluids.  They ordered her to go back on a modified food plan with only thickened liquids to drink.

I was happy to know that we had answers and that Mom was getting better, but I was furious at SOS Skilled Nursing and blamed them for Mom’s condition.  MRSA in itself is very serious and had to be reported. I wrote a letter to the administrator of this skilled nursing hospital and copied it to the liaison at their corporate office and the Texas Department of Aging and Disability (DADS). I listed out all the things that this facility did (or didn’t do) to contribute to my mother’s condition and requested that they do what is necessary to correct the problems before someone else suffers in the same way.  I never received a reply from the administrator or their corporate office.  I did; however, receive a phone call from a representative at DADS.  They assured me that they would open an investigation.

I tell you all this because all these issues that happened occurred even though I was there almost every day.  Can you imagine how bad it must be for those residents who do not have someone to look out for their best interest?

The next blog will spell out what happened in the next stage when Mom was ready to be released from the hospital…..

*http://www.mayoclinic.org/diseases-conditions/mrsa/basics/definition/con-20024479

When mother arrived at SOS Skilled Nursing (remember a fictitious name), she was turned over to a nurse and nurses’ manager for check-in. They started off with checking her vitals and a brief assessment of her condition.  They did not allow catheters, so hers was removed.  She was still bed-ridden and using a newly placed feeding tube located just below her left ribs.  She had not eaten or had anything to drink through her mouth for a week. The reason for this was due to the fact that she had failed a swallow test in the hospital.  The hospital had sent detailed documents about her stroke and diagnosis, as well as, care instructions.

She was aware of where she was and recognized me, but her ability to communicate was limited.  She was diagnosed with aphasia which is a condition of the brain that commonly occurs after a stroke.  In layman’s terms, she had problems translating her speech to match her thoughts or intentions.  I would only hear words that did not make sense to me.  At first, she was unaware that she was not using the right words.   It was like learning to understand a toddler’s baby talk.  After a while, moms can understand their child’s vocabulary and I slowly began to figure out what Mom was trying to tell me.

The therapists began working with Mom within the first couple of days of her arrival.  The goals were small in the beginning.

1. Sitting up and awake for a few hours a day
2. Sitting in a wheelchair and adjusting to staying in the chair for as long as possible.
3. Practicing using pictures and cards to communicate what she needed.
4. Swallowing exercises and speech exercises to wake up areas of her brain.

The milestones in the first month of mother’s stay were really baby steps. I would get excited just to see her out of bed.  The communication was improving somewhat and her swallowing exercises were helping. She passed her second swallow test which graduated her to food by mouth that was pureed and liquids that were thickened.  The biggest issue with all of this was that the pureed food looked very unappetizing and Mother would often refuse to eat it.  She also did not adjust to staying in a wheelchair for more than an hour to two. She would get upset if she could not get back into bed when she wanted.

This is where the issue with the large number of patients per caregivers came to the surface.  I would come in and Mother would be eating her meals in bed.  She would often need assistance in getting cleaned up or her teeth brushed, but there were no caregivers available to help her for long periods of time.  She had been diagnosed and treated for a bladder infection and hemorrhoids, which were obviously caused by her adult garments not being changed often enough. There were days when her breakfast tray was still in her room at 5PM.  If she was in her wheelchair and wanted to go back to bed, she could be waiting for 45 minutes or longer for someone to come help. One day, she got impatient waiting and tried to get out of her chair herself and fell.  She hit her head on the floor and had a cut and a black eye for a couple of weeks!  I must have complained to the staff and nurses’ manager a dozen times, but I was always told that they were just short-handed and doing the best they could.

After about 2 months in this facility, the therapists had Mother standing and learning to use her left hand.  Her speech was getting better and her accuracy with words was about 50%.  I was beginning to get excited about her progress and had great hope that she was on the road to recovery.  She had passed a third swallow test and they put her on a regular diet.  She just needed her food cut up for her, but it no longer had to be modified.

After a couple of weeks, I started noticing Mother was wheezing and asked the nurse to check her out.  They told me that they didn’t hear anything that unusual and it was probably just congestion from allergies.  Over the next several days, it only got worse and a terrible cough developed.  I insisted that they have a doctor examine her, so they got the nurse practitioner to okay an x-ray of her chest.  I was told that the results did not show any fluids in her lungs and that they were giving her something for allergies.  I was also told that she was given antibiotics for yet another bladder infection. Another several days goes by, with Mother’s condition only getting worse. She was not eating and refusing to get out of bed.  Her therapy appointments were being missed.  She was getting very weak.  I kept insisting that I was concerned she was getting pneumonia, but they showed no concern.

4 more weeks go by. Around midnight, I received a late night call from the nurse who said that Mom was running a very high fever and they were ordering another x-ray.  The next morning I came in to see her and was stopped as I walked down the hall by the nurse.  She tells me that Mother was diagnosed with pneumonia, because the x-ray did show fluid in her lungs!  I asked if they were sending her to the hospital and was told, “No.”  The nurse said she was being given a stronger antibiotic, but that was all.  In disbelief, I went straight to see Mom and found her looking and sounding terrible.  My intuition was telling me that she needed to be hospitalized.  One of the therapists came in to check on Mom and I told her my concern.  She just said to me, “I understand. If you feel she needs to go to the hospital, you have every right to ask she be sent there.”  I asked her, if she were her mom, would she send her to the hospital?  She just repeated to me what she said earlier.  I read between the lines and went straight to the nurse’s station to demand an ambulance be called to transport Mom to the emergency room.  They told me it could take up to 2 hours for a “non-emergency”.  I insisted they call.  Thirty minutes later, Mom was being transported to St. David’s Medical Center.

Tomorrow, I will tell you what happened next ……….

Making the decision to move yourself or a loved one into some type of dependent care or assisted living facility is one of the most difficult things to do. You want to do what is best for all concerned.  Often this decision does lie on the shoulders of a spouse or child, so it can be difficult to find the best way to help the individual warm up to the idea and understand the reasons why they need to be there.  Mother understood the reasons and agreed, but I knew that it was the last place she wanted to be.  Even though she had owned and operated a nursing home for decades, she had told me for years that she never wanted to live in one.  She also did not ever want to be a burden to her children or grandchildren.  She accepted the idea as a temporary place for her to heal and get better.  She was also comforted in the fact that her granddaughter and I would be able to come and see her every day. This type of arrangement might not be possible for other families, but I cannot stress enough the importance, not only to your loved one’s well-being and happiness, but also to keep an eye on the level of care they are receiving.

In the previous post, I mentioned the caregiver to patient ratios.  It is not an exaggeration that in almost any type of dependent care facility, the ratios are terrible.  The best I have seen it anywhere is 1 caregiver for every 7-8 patients.  If even just 50% are not able to do most of their personal care without the aid of another person, it is an overwhelming task.  These caregivers often work long shifts with little pay.  The facilities will tell you that the turnover for these employees is high.  They will also tell you that they know they are “stretched to the limits, but they keep on staff the ratio that the health department suggests as the minimum number and that is all they can afford.”

This comment leads me to discuss the costs.  Different places will charge different rates, but none of them are lower than independent living.  It is probably average in the State of Texas for the rate to be $140/day + extras. These extras include medications, physical therapy, doctor’s visits, lab tests and incontinence supplies.  For those seasoned life people who are 65 and older that qualify for Medicare, you will be covered as a patient in a skilled nursing facility for up to 100 days.  Medicare paid a great portion of Mother’s expenses, but not all.  This is where supplemental insurance is crucial.  This second insurance will pick up most of the other costs up to the limits within your policy.  Mother had also planned ahead and purchased hospital income insurance and prescription insurance.  What is difficult is what do you do when you or your loved one needs to be in a place such as this for more than 100 days or you do not qualify for Medicare?  There are several options, but you need to plan ahead for these or it can break the bank and fast.

Long Term Care insurance is the number one thing I would recommend everyone obtain.  It is expensive, but is way less of a cost to you if you ever find yourself in a similar situation. Without insurance, self pay is an option, but be prepared for expenses of $7000-$8000/mo.  You can get a caregiver service to come to your home or assisted living facility, but be prepared to shell out $30-40/hr.  If you are a veteran or wife of a veteran, you should be able to get some assistance in paying for long term care, but it can take some time to apply and the amount they pay may be based on your income.  In the State of Texas, lower income people can apply for Medicaid.  Elder care attorneys can assist for applying for assistance with these agencies; however, they in themselves charge hefty fees.  I was told $10,000 for one I talked to on Mom’s behalf.  I chose not to hire one.  These elder care attorneys will also tell you about “strategies” to re-allocate your money and income in order to help an individual qualify that would not ordinarily qualify.  These strategies made me skeptical, but I imagine they are legal.

I also learned more about hospice care services in this stage, as well.  I think most people, like me, thought that hospice care is for people who are on their death bed.  I learned that they offer services to individuals and families who just need help with an ill loved one.  It is not full time assistance, but they can help a few times a week with certain things.

In the next entry, I will share more about what happened in this skilled nursing facility ……

After touring the facilities on my list, I needed to make a decision on the place I thought would be best for my mom.  Mom was still very early in her stroke recovery and it was a big question mark as to how much she would improve. I tried to consider what I believed she wanted, since she was really unable to communicate to me in this stage. I was needing to choose between what seemed to be two very different options.

The first place seemed to be a homey environment with a small wing dedicated to stroke patients.  There were only 8 rooms in this wing with 2-3 caregivers and one nurse.  There were 3 beds in each room.  They did have a therapy room, but it was about the size of a small bedroom and had a couple of pieces of gym equipment inside.  No one was in therapy at the time and no therapists on the premises to meet.  The facility was older and it had not been updated in years. The vast majority of the residents in the entire facility were mentally-impaired or severely disabled and the range in age was from adolescents to seasoned life people. I walked away from this place thinking that Mom would probably get good care there and be comfortable, but unsure how much she would be able to improve and recover from her stroke.

The second place was a large, updated facility with three wings.  There was a nice porch out front where you could find residents sitting and enjoying the outdoors. You walked into a big reception area and then a large living room where the residents and family can sit and visit, watch TV, play games, eat, or participate in social activities.  The nurses station was the central hub between the three wings.  Two were for long-term care residents and one for short-term rehabilitation residents.  There were probably about 120 beds in this facility. (Two beds in a room.)  Each wing had one nurse and 2-3 caregivers.  If you do the math, you will figure out that that was about 1 caregiver responsible for 15-20 residents.*  They had a very nice therapy room and a large staff of therapists that provided physical, occupational, and speech therapy. The rehabilitation aspect of this facility was impressive. I did talk to a nice gentleman who said he had suffered a stroke and was brought in there in almost the same condition my mother was in at that time.  He said he had been there a couple of months and he was walking, talking, and showed very little signs of his stroke trauma. He was hoping to be released in a few weeks, he said.

I knew that, in all likelihood, this last place was a good option for Mom’s recovery due to the rehab capabilities, but I was very concerned about the quality of care she would receive.  I saw residents sitting in the wheelchairs in the common areas, unattended, and sleeping or just existing. I heard the call buttons buzzing at the nurse’s station constantly and seeming to go unanswered for long periods of time.  After discussing all these findings with my family, we collectively agreed that we thought we should send Mom to a place that would have the best therapeutic services.  We wanted her to recover as much as she could.  We had hoped, like the gentleman I met, she would only have to be there for a few months.  I thought that if I was able to be present everyday and keep an eye on her, I could make sure she was getting the proper care.

I told the social worker at the hospital that we had selected option two, which I will call “SOS Skilled Nursing Rehab”. (This is not the real name.) The social worker at the hospital then contacted the facility and sent them the medical records and documents needed to get her approved.  Within a day, she was approved and we scheduled the transfer from Dallas/Ft. Worth to Austin via private ambulance.  Due to mother’s condition, feeding tube, IV’s, and paralysis, this was the only option.  (FYI, Medicare does not pay for private ambulance transfers.  Get bids.  I got quotes from $1800 to $3500.)  Exactly one week from her stroke, she was on her way to the skilled nursing rehabilitation facility in Austin.  I was there waiting for her arrival…..

*If you would like more information on the staffing ratios, check out this website: http://www.texasbabyboomers.com/texas-nursing-home-staffing-ratios/ .

It is important for readers to know that both my grandmother and my mom owned and operated a private nursing home in East Texas.  I grew up with an understanding of these places and saw how a well run facility functions and looks. I learned what inspectors want and do not want to see. The industry has changed substantially in recent decades.  Most of the changes have been through increased regulations and the fact that very few facilities are private-owned anymore.  They are part of a corporation, hospital, or chain. They are profit-driven. It would not be a stretch to say that a large number only do the minimum amount needed to pass state standards in order to keep getting Medicare or Medicaid. There a few good ones, but even the best have their issues.

Below is a checklist you can print out and take with you, if you ever find yourself in the position of making a decision to move yourself or a loved one into a skilled nursing facility, retirement home, assisted living facility, memory care facility, acute rehabilitation hospital, or a nursing home.

Checklist for Evaluating a Nursing Facility or Assisted Living Facility

There are three key things I would suggest you keenly observe during your tour:

1.  Are there plenty of common areas for socializing and activities? Are they occupied with patients, care-givers or hospitality personnel? What are they doing? Do the patients look like they are having a good time? I would even find a person who lives there that might be willing to talk to you. Ask them if they like living there. Listen to what they have to say. If they have a visiting family member present, ask them about their experience.
2. As you are walking down the halls, observe the cleanliness of the rooms, floors, and common areas. What does it smell like? It is normal to run across bad odors sometimes, but not everywhere or all the time. Cleanliness and avoiding “a hospital smell” was always important to my mom in her nursing home. She made sure the floors were spotless and shined.
3. As you go by the nurse’s station, listen for whether the button calls from patients are being answered timely. If you hear constant buzzing that is not being answered within a couple of minutes, that is a sign that there is a slow response to needs. Most facilities have lights above the doorways into the patient rooms.  If these lights are lit, it means they have pushed the call button and are waiting on someone to respond. Observe how long they stay lit.

There a many other things of which you should inquire and observe, but if you see problems in any of these three things, I would give it great consideration in your decision. Other things would be:

1. Menu/Food – Is it nutritious and tasty? Do the patient’s get a choice?
2. How many caregivers per patient?
3. Observe the rehabilitation area. What kind of equipment do they have? How many therapists? How much time per day do they spend with patients?
4. What are the residents doing?  Are they active and participating or just sitting in their chairs sleeping or unattended?

The next post will go over what happens after you pick a place and guidelines for getting the best possible care for yourself or loved one.