The Empowered Patient, Part 4

In my opinion, an empowered patient is nicely assertive.  I have always believed in building positive relationships with healthcare professionals.  I want them to look forward to seeing me, never dreading my presence.  I want them to know that I am part of my health care team, and in no way their enemy.  I want the professionals who take care of me or my loved ones to feel comfortable with my suggestions and requests, never thinking that I am out to ‘get’ them in any way.

Please understand, however, that if I do have a concern that I think needs to be taken to a supervisor, be it nurse manager, or hospital administrator, I will not hesitate to do so. That is a given.

What I am saying in this post is that, I  believe much more is accomplished with health care professionals if we establish a positive working relationship as quickly as possible.  That foundation will then make possible the ‘give and take’ that is necessary during the treatment of illness.

The Empowered Patient, Part 3

As I continue my discussion of what it means to be an empowered patient, please keep in mind that sometimes the patient is empowered because of the family members who are involved,  Sometimes an empowered patient requires empowered family members.

An empowered patient makes suggestions.  Again, that is easier said than done with some doctors.   However, if you see a test or procedure that needs to be done or repeated, it is in your best interest or the best interest of your family member to make that suggestion to your doctor, even if that doctor does not always appreciate them.  Just think about how much you might regret it, if you don’t.

Because I was so involved with my parent’s treatments, medication, and tests, I knew which tests had been done and had a good idea (because I had asked question) when they needed to be repeated. Because I was always polite, never condescending in my tone when I made sugges Dr. B took my suggestions well. Dr. A, not so much.  However, in my mind it didn’t matter.  My parent’s care was more important than my feelings, or the doctor’s feelings.

An Empowered Patient asks for things.  This especially applies for a hospitalized patient, but is also applicable in other situation, doctors offices, testing situation, etc.

When my grandmother was in the hospital this past fall, the doctor decided that a tube needed a tube put down her throat.  The nurses had tried to do it when Mom was first admitted, but were unsuccessful in getting the tube in place.  For the second attempt, her doctor decided to ask the radiologist to do the procedure, using a camera to guide the tube down her throat.

Because Mom had been in tremendous pain, and because, well, because she was 96, and because I’d couldn’t stand the thought of her going through that procedure alone, I went with her as she was transported to the radiology department.  I walked into that area as if I had been there many times, never leaving Mom’s side.  The technicians did not ask me to leave and I didn’t offer.  However, when the radiologist came in, I did ask to stay.  By then I already had the special apron on and had taken my place by my grandmother’s head and was gently stroking her hair.  I did everything I could to convey that I was not going to be a problem at all.  The radiologist gave me permission to stay and so I did.  This would never have happened if I had not been bold enough to ask, then Mom would have had to endure that procedure alone.  Sometimes you must be ‘nicely’ bold. (my daddy would be so proud).

The Empowered Patient, Part 2

The Empowered Patient, in my opinion, is a good listener.  Especially when a diagnosis is first given that is serious or terminal in nature.  Some doctors are very good at sharing information with their patients.  It is in our best interest to listen carefully.  Sometimes it is just important to know what a doctor hasn’t said as it is to know and understand what he has said.

It is my suggestion that you have someone with you at doctor’s appointments, especially in the beginning, when they are sharing test results and treatment plans.  There is no way that we can hear, understand and remember all the details likely to be shared.

An Empowered Patient asks questions.  With certain doctors that is easier said than done.

When both my parents were in the hospital on the oncology floor in rooms right next to each other, we had two different oncologists.  These who men were partners and covered for each other frequently.

One doctor, Dr. A was, and probably still is, known as the best cancer doctor in the area.  He was the leader, the pace setter among the other oncologists.  He was also a cancer patient, having an incurable but treatable form of cancer.  So many people sang his praises. Rightfully so.  Many people had their years of life extended because of his care.

As you can imagine Dr. A, was extremely busy, and was burdened with a very difficult medical practice.  He was very focused and serious.  He came on the floor and there was no chit chat.  He went right to work and the nurses better be ready.

Because my parent’s rooms were side by side, he could go to one first then the other.  He was totally focused on the patient in that room.  He quickly went through the charts, verbally gave instructions to the charge nurse who was with him, wrote more notes into the chart, said a few words to us and was gone to the next room.  Five minutes, max!

I quickly learned that if I had a question for Doctor A, I had to be prepared to interrupt him, either when he was writing or talking, because he was not going to pause long enough to hardly take a breath, much less to see if we had anything to ask.  So that’s what I did.  I would interrupt him.  Even though I tried to interrupt him in a polite way, it was obvious to me he didn’t like it.

However, he did answer my questions.  That, for me, at that time of crisis in my life, was what mattered.  Please understand. I am not saying that he was a bad doctor at all. He was just focused.

Doctor B was entirely different.  We learned several things about his personal life while he cared for my parents.  He didn’t mind visiting for a few moments. He came in with a smile and a joke or two.  He would actually pause and ask us if we had questions or concerns for him.  I always looked forward to the days when he would be making the rounds.

Both of these doctors are excellent doctors.  They are examples of doctors you and I have known and will know during times of medical need in our lives.  There will be doctors that are easy to communicate with and doctors who are not.  We must accept this as part of their personality and as part of the ‘package’.

Our challenge is to somehow be able to ask the questions we need to ask.  For a ‘Doctor A’ type, I suggest that you have your questions written down before your appointment.  I know that is not always possible, because often questions come to our minds during appointments, depending on what is being discussed and what decisions being made.  Additionally, I suggest you be prepared to interrupt – politely – if necessary, your ‘Doctor A’.  No, he may not like it, but he needs to know that you have questions and you want answers.

For a ‘Doctor B’, well, your challenge here is to not get sidetracked into side conversations to the point that you forget to ask questions!  Again, it is always a good idea to have your questions written down.

More to come about The Empowered Patient.

When Nurses Make Mistakes…..

Write down everything.  Write down every mediation, dosage, and time it is given.  Write down what tests are taken and the results.  Write down everything.

That was advice given to my sisters and I when our parents were hospitalized.  We heard this advice not from just one person, but several.  Truthfully, this advice frightened me.  Are our health care professionals so inept that if we don’t ’stay on top’ of everything, serious mistakes will be made and our parents could die?   I suddenly felt like their safety was in my hands.  When combined with the trama of their illnesses, this added responsibility was overwhelming.

Yes, we started writing down everything.  I had my spiral notebook and made a valiant attempt to record it all.  The fact was, I couldn’t do it.  There were times when I was wrapped up in the activity or emotion of the moment, would just flat forget.

I finally decided to let it go…..  I let go of the worry about whether or not something would go wrong.  I let go of concern that the nurses might make a mistake with their medications.  I finally relaxed.

There are things I continued to do.  I continued to ask questions about medications, tests, vital signs, etc.  I stayed very involved and aware.  I just didn’t write down everything.

All that said, there were mistakes made.  Not many and nothing serious,  but mistakes none the less.  Sometimes I picked up on the mistakes.  Sometimes another nurse found it.  There were a few occasions of vital signs written down incorrectly.  I don’t remember any serious mistakes with medications.

What should be done when a mistake is made?  In my opinion, it depends on the type and severity of the error.  Because the mistakes I saw were not serious and did not affect the health or safety of my parents, I usually mentioned the error to the nurse involved, making sure that she was aware of it, and then took it no further.

However, if I had become aware of something that was caused by carelessness and inattention to detail, or if I had found out that incorrect medications or dosages were administered, then I would not have hesitated to talk to the nursing supervisor.

I believe that nurses do a wonderful job each and every day.  They are competent and compassionate, accepting the huge responsibility of  administering medications with professionalism and accuracy.

Be Nice to Them—They Carry Needles!

This last month I have spent 10 nights with Mom, my grandmother, at the hospital, and 2-3 days a week with her at the skilled nursing facility.  Once again my respect for nurses and related medical staff has been renewed.  They work long hours, have many serious responsibilities, and still make time to do the small things to help make patients comfortable. They fluff the pillow an extra time.  They put on socks and take off socks.  They wipe posteriors for precious little old folk who can’t do it for themselves.  Yes, I am amazed at the ladies and gentlemen who work day after day with a caring spirit and kind heart.  I know there must times when they are fatigued, but they do their best to not show it when they walk into our room.  They work with a smile and caring hands no matter how stressed they may feel on the inside.

Yes, I admit there are nurses who should not be nurses.  I have seen them also.  I am not talking about them.  In every profession you will find people who should find some other job.  I choose not focus on them.  They are few in number and do not influence my feeling about medical professionals as a whole.

When I am in a hospital setting with someone, my parents, my husband, my mother-in-law, or my grandmother, it is my desire to become part of the team, working as one with the nurses and aides to care for my loved one.  I help get ice and water. I help the nurses when my family member needs to be repositioned in bed.  I do the things I can to help free up the nurses and aides so they will have time to do the things I can’t.

I like to get to know these caring angels, building relationships and even friendships with them.  I want them to get to know me, but more importantly, I want them to know my family member.

I want them to understand that my presence is not a threat to them. I am not there to evaluate their work or try to catch them if they make a mistake.  As I said, I am part of the team.

Next blog: What if the nurses do make a mistake?

Nursing Homes, Part 4

This is fourth and final (for the present) post on nursing homes. It has been an interesting process for me as I thought and remembered both the good and bad points about our Mother’s stay in a facility. Hopefully, my series of posts on this subject will be useful to you. Actually it is my hope that you are never faced with the decision of placing a family member in a nursing home.

7. Always make sure, on behalf of your family member, that his/her doctor’s orders are being carried out by the staff of the nursing home. Do not assume anything. Most of the time most staff members are very conscientious, and they will follow completely ‘doctor’s orders’. For them we are very grateful.

Then there are the others. There are not many of them, but they are present and always will be. I do not believe they are purposely neglectful, just inattentive. It is also possible that they are overwhelmed with their responsibilities and in their efforts to be sure that their residents are taken care of, tend to rush through tasks, not making sure to take care of the details. Example: When Mother’s feeding tube was put in, the doctor gave specific instructions for her bed to always be at a 45 degree angle. The reason being, if I remember correctly, so that should a problem occur with the feeding tube, she will be less likely t0 aspirate. When those orders were given, we put a sign at the head of Mothers’ bed stating that her bed be always left at a 45 degree angle, and we talked to the administration, making sure they had notified the staff about this very important instruction from the doctor. In spite of the measures taken on our part, we still, on numerous occasions came in and found her lying in a flat bed.

When the doctor changes the medication of your family member, always verify that the medication nurse has made the necessary changes on their chart. Again, don’t assume anything. You must make sure for yourself.

8. If you have concerns about your family member’s care, say something. Talking to a CNA(aide) will probably not fix the problem, because there are several CNAs taking care of your loved one on different shifts throughout the day and night. Not everyone will receive hear about your concern and therefore will continue doing what they have been doing. The best thing is to talk to the head nurse on that shift, or if necessary go to the director of nursing or the administrator. With a smile and nonthreatening tone, voice your concerns. Probably they will listen, take notes, and decide on a course of action to make sure the problem is solved and your family member’s care meets your expectations. Even then, I am sorry to say, you must check to be sure your concerns were communicated to all staff involved in caring for your loved one.

9, When you are first gathering information about a facility and deciding on placement options, ask about the ratio of CNAs to residents and if that ratio changes during the day or during then night. One of the things that concerned me, and I didn’t realize the full scope of this (in my opinion) problem at first, was that there were times during the day when at this facility, most of the CNAs were off the floor and the residents were left with almost no one to call on for help.

At meal time the CNAs took all the residents to the cafeteria to eat and stay with them to help serve the food. There were a couple of CNAs on the floor, but they were given the task of feeding residents who couldn’t get out of bed. These aides did the best they could if they saw a resident in need, but unless it was an emergency, that resident had to wait until the feedings were complete.

In addition to meal times, this nursing home had a ’smoking break’ for residents and staff. The smokers would all go outside to the patio and puff away. It seemed that most of the CNAs smoked and they all went at the same time on this break. There were times when Mother needed assistance for something, and she had to wait until her CNA was back on the floor. In my opinion, the smoking breaks could be scheduled at a staggered time so the aides could cover for each other.

These times of short staffing on the floor became a personal problem for us during the short time that Daddy was a resident. About 3 days before his death, Rick and I decided to take a quick trip to Dallas to see our daughter and son-in-law, and also because I had a doctor’s appointment there. On our way to Dallas we decided to stop in at the nursing home and see Mother and Daddy. This was about 4 days after Daddy’s nursing home stroke. He had been semi-comatose for several days, barely responding to questions or acknowledging someone’s presence. We found Daddy fully clothed sitting in his lift chair sleeping. We talked to his CNA and she told us that she asked him if he wanted to get up that morning and he said yes. Therefore she got him up and dressed. There was no problem with her getting him up. I was thrilled to see him sitting in that chair. However, I could tell that he was getting tired and needed to go back to bed. Rick and I talked to him for awhile and he did seem a little more alert than before. About 11:00 a.m. we needed to leave. I went to the nursing station and told the charge nurse that Daddy needed to go back to bed. Daddy was beginning to be in pain, getting cramps in his She sweetly assured me that he would be transferred to bed. Something inside me told me not to leave until that was done, but I left anyway, feeling the need to ‘get to Dallas’. Because I continued to have this nagging concern, I called back about 1:30 p.m. to make sure that he was back in bed, and ’sure nuff’ he was still in that chair. I told the nurse, the same one, that he had needed to be put to bed, reminding her that I had told her so over two hours ago. Once again, she assured me that Daddy would go right back to bed. Not completely trusting her words, I called again about 2:30 p.m. A different charge nurse answered this time and I asked again. He was still in that chair. She went immediately and put him back in bed.

Oh yes, I was mad. Yes, the administrator heard about it as well as the director of nursing. The reasons? Just after 11:00 a.m. every day, most of the staff is in the cafeteria feeding the residents. There was no one except the charge nurse available to transfer him back to bed. At 1:30 the facility was changing shifts.

In addition to being angry about my father being left in his chair for hours after he needed to be back in bed, I also felt a heavy burden for those little people who had no one to advocate for them. Were they left for hours also in chairs, beds or wheelchairs, in pain from being in one position for so long and no one available to help them? What if someone had a stroke or heart attack during meal time or a smoking break? My sisters and I voiced these concerns to our administrator, and though these concerns appeared to be well received, no changes were made while Mother was a resident in this facility.

I could make several more points on this topic of nursing homes, but for now I will write about other things. Please understand that reputable nursing homes are not inherently bad places and have bad staff members. Most of them are good facilities with staffing that is competent, caring, and compassionate.  However, as I suggested in a previous post, because the administrators and staff are human, mistakes will be made. It is up to you and me as family members to shoulder the responsibility of being aware when these errors happen and making sure they are fixed. No one else will do it on behalf of your loved one. We must ’stand in the gap’ for them.

Nursing Homes, Part 3

This post continues my thoughts (and apparently I have quite a few of them) on nursing homes.  It is my desire to help you, my readers, gain understanding and insight that will be useful when or if you are faced with the necessary decision of nursing home placement for someone in your family.

4. Moving a family member into a nursing home is exhausting.  It was for me.  There was so much to do.  When we moved Mother into the nursing home,  there were many things she needed that she had not needed in the hospital.  We got her several changes of clothes, toiletries, a TV, decorations for her room, a bedspread, and the list seemed to go on and on.  We labeled everything; her underwear, her socks, her clothes, everything.  Even with all the labeling, her things seemed to disappear.  Part of the time, the aide that did laundry put her things in another room.  We had a little refrigerator for her with things she liked to eat.  At first it was a real treat for her, but she could not get into frig by herself so we gave her the goodies when we were there visiting.  We had candy for her stored in one of the drawers of her chest.  She loved chocolate and delighted in eating it.  The candy began to disappear from her drawer.  Because her memory and her communication skills were so poor she could not tell us who was the culprit.  We never knew if it was  staff or another resident.

Please understand that in some nursing homes things are taken from residents rooms.  I hate to use the word stolen, but sometimes, especially if staff members are doing it,  theft if the most accurate term.  Residents will sometimes wander from room to room and bother things, but most of the time they are harmless.  Most staff members are wonderful and would not dream of taking something from a resident, but there will always be one or two……

5. If you are the primary caretaker of your family member, make sure that you have Medical Power of Attorney.  That may not be the correct legal term, but whatever it is called, you need that legal document, and you need several copies of it.  Though the privacy laws are much tighter now than just 3 years ago, a Medical Power of Attorney should enable you to have access to your family member’s medical information at the nursing home.  Because I am not a legal expert and are not knowledgeable of  the current privacy laws, you need to not rely on my information as a legal source.  Please find a professional in this area and follow their advice.

6. By having Medical Power of Attorney, you can keep close supervision of the medications your loved one is taking.  Please check frequently for changes in dosages, as well as medications that may be added or taken away.  Ask questions. Ask questions. Again, ask questions if something doesn’t seem right.  I remember that Mother was having trouble with her bowels.  It seems she was having diarrhea and we couldn’t get it stopped. They were giving her mediations for this.   When I checked on her medications, I found that she was also taking meds for constipation!  I was astounded that her nurses had not caught this problem. If I had not asked questions, then we may not have found the problem. Most of the time we were notified when it was necessary to alter her meds, but sometimes we found that we were not made aware of all the changes.

In this nursing home, the ratio of medication nurses to residents was astounding.  Their responsibility was huge.  Most of them were competent.  Some were competent and compassionate.  I was sorry that they had so many residents for which to care.  However, in my mind and in the mind of my sisters, our mother was their only patient.  We were always nice and friendly to the nurses, but they knew we were very serious when it came to our mother’s care.

Yes, there will be a part 4 on the topic of nursing homes.

Nursing Homes, Part 2

If nursing home placement has been or is about to be necessary for one of your loved ones, there several things to  consider.  Once again please remember that I am making these statements and expressing my opinion based on our experiences with one nursing home.  I am not a health care expert, nor have I had professional training in the area of nursing homes. I am just a family member who has walked down the nursing home path with my mother.

1. Search, check, get recommendations, make visits, and keep looking until you find a nursing home that you are comfortable with.  Look for cleanliness, comfortable furniture, staff going up and down halls interacting with residents, and food that is reasonably good.  Personal note: I have seen food in three different nursing homes and an assisted living home.  I hated it in all four places. ugh. I know there are probably facilities where the food is excellent.  I just haven’t found it yet.  Look for smiles.  Smiles not just for you.  Those don’t count because they are wanting your business.  Look for smiles on the faces of the staff and residents as they interact with together.  Look for smiles as the staff interacts with each other. Look for smiles on the faces of the residents as they interact with you.

Some of you may have other things that should be added to this point.  Please feel free to add comments about things that need to be found in a facility before placing a family member there.

2. Once you decide on a nursing home and begin making preparations for the transfer, start building relationships with staff members and the administration.  Get to know them personally.  It is essential that you build a friendly working relationship—-emphasis on friendly.  These people do not need to see you a a threat, at least from the outset, and hopefully, if this is an above average facility, you may never be a threat.  They must see you as someone who is not looking for things that are wrong, but instead they must see you as someone who will find things that are right.  The staff and administration must see that you join them as part of the team caring for your loved family member and their new resident.

3. That said, the staff must understand that you will be consistently vigilant in your oversight of the care your family member receives.  Yes, I said, oversight. Readers please understand that nursing home placement does not relieve you from the responsibility of caring for your loved one.  In some ways your responsibility increases.  You may not be doing the dressing, bathing, and feeding, but you are watching the actions of many people who do.  Please do not leave your family member in a nursing home without someone to check on them daily or almost daily.

We were always so sad to see precious little old people in our nursing home who had not seen a family member in weeks or months  We knew this to be true because the staff would tell us.  So sad.  More about this later.

I have much more to write on this subject so I will sign off and tomorrow will be Part 3

Nursing Homes

Writing this post about nursing homes has been on my mind for quite a while. Truthfully, I can only write about our experience with one nursing home, however some of the things my sisters and I learned are applicable to all nursing homes. The things I am going to say here apply to conditions and relationships with staff in reputable nursing homes of satisfactory and above quality.

Yes, there are bad nursing homes. Those I will not discuss except to say do not under any circumstances allow one of your loved ones to stay there. There are better choices. Make them.

When it was time to select a nursing home for Mother, we asked many friends and acquaintances for recommendations and then based on those recommendations we made personal visits to each one. The one we selected had an excellent rehab program. At the time we were certain Mother had the ability to get stronger and thus would benefit greatly from their program. When I visited this facility, I was impressed with the feeling I got when I first approached the nurses desk. There were smiles on the faces of the nurses and aides, and they seemed to have a good attitude. I didn’t see any scowls, or hear any grumbling of any sort. One would think that possibly they were just trying to impress me, because somehow they sensed that I might be bringing them a new resident. Yes, that could be true, but at the time I did not sense any fakeness at all. This staff seemed to be genuine in their positive attitudes. Generally, during the year and 10 months that Mother was a resident there, I saw lots of staff come and go, and, for the most part, most days and most staff members seemed to be positive and have good working relationships.

Oh, yes. We had problems and some of them I will share with you. However, it is the good things that I wish to focus my thoughts on first. The rehab program was indeed excellent. Mother began her rehab and did make progress. The ladies who ran that program were wonderful to Mother and to all the residents I saw under their care. Mother received speech therapy, occupational therapy, and physical therapy. It was great to see her beginning to make progress.

After Daddy passed away, and as the months passed, her progression turned into regression. The therapists continued to work with her as long as they could justify keeping her in the program. Even when they had to dismiss her, they would look for opportunities to readmit her again. I don’t remember the circumstances that gave them the ability to starting giving her therapy again, but I know they did their best to keep her in their program.

The therapists loved Mother. They would weep as they talked to me about her. She was always cold so they would make sure she had blankets on as much as possible. They did everything in their power to make her comfortable. It broke their hearts and it did mine when we finally had to accept the fact that therapy was not appropriate for Mother any more.

In any nursing home you will find staff who loves their job and residents and you will find staff who doesn’t. That is just the way it is and always will be. In addition to that, you will find what you are looking for. If you choose to find good and positive people, you will find them. If you choose to focus on what if negative, then you will find negative people.

As I mentioned above, during the time Mother was a resident in this facility, there was a continual turnover in staff. In spite of the constant change, there was always someone who was responsible for caring for Mother, that loved her and did a good job of seeing to her needs. I think that was God’s provision for her. Those staff members we loved and appreciated, and we told them so.

There are many nursing homes who are run well and who have a genuine desire to care for and meet the needs of their residents. If a nursing home placement is now necessary for one of your family members, look and keep looking until you find one. Don’t settle for a poorly run facility for any reason. You will have fewer problems and more peace of mind if you keep your standards high. Most importantly, your loved one will have better care.

Tomorrow: Oh, the problems we found and challenges we faced.

Oncology Nurses—Gotta Love ‘em

I hated the word. It was the first thing I saw when I got off the elevator on my parent’s floor. There were dozens and dozens of times that I walked past it. I didn’t notice it each time, but my feelings about that word never changed. Oncology was the hated word. It represented the cancer that was destroying my parents lives and breaking our hearts.

However, as much as I hated that word, being on the Oncology floor held entirely different emotions for me. There was a special atmosphere as you walked down the halls. Yes, it looked for the most part like any other part of the hospital. No specialness there except that the rooms were bigger than rooms on other floors.

One difference was the patients and their families. You knew that every patient had the same disease-cancer and that every family was enduring the same difficulties. In the midst of this sameness, however, it was apparent that every family had a story. Their story. Unique, and full of emotion. Many of the families spent time talking, sharing, and crying with other families.

Another difference was the nurses. They were different. Some of them were cancer survivors and they understood what we were experiencing because they had experienced it for themselves. Others just had genuine caring hearts. I can not tell you the number of times I walked out of one of my parent’s room crying and there stood a nurse ready to wrap her arms around me and let me cry. There were times when I just needed soemone to talk to. They were very generous with their time.

Oh, yes, not every nurse was wonderful, and there were a couple that we didn’t are for. We even requested that they not take care of my parents again. There were and are very few of those kinds of nurses.

The oncology nurses did their best to make sure that if Mother and Daddyfelt like it, they spent some time together every day. The nurses would put one of them in a wheel chair and take them next door. Mother and Daddy shared numerous meals because of the caring of those nurses.

I could share many experiences with these nurses and indeed I will in other posts. I do want to share this one experience that stands out in my mind.

Mother and Daddy were still both in the hospital in May–Mother’s Day. One of the nurses went and bought, with her own money, a red carnation in a bud vase. She took it to Mother and told her that it was from Daddy. Because Daddy’s health had deteriorated at that time, he didn’t know the difference. But Mother did, and my sisters and I did. It was such a sweet, precious thing to do.

We loved those ladies and men, because they loved our parents.