Archives for posts with tag: advocacy

Blog: Dealing with Change


“I’m not so sure where I have been

I don’t know just where I’m going

Hard as I hold it in my hand

I can’t stop the wind from blowing …”

Melissa Etheridge: “Change“.

“Change”, by Melissa Etheridge is one of my favorite songs. The refrain of the song, “the only thing that stays the same-is change” rings true in all aspects of life.  It’s easy, almost magical to watch a baby grow into a toddler, then a child moving into their teens followed by young adulthood. As parents we know we have done our job if our kids make it to adult hood with very few scars. As time goes on, other changes take place.  One of the most difficult changes to witness is watching someone you love become ill and sometimes changing into someone we don’t recognize. It doesn’t seem fair and sometimes it doesn’t seem real.

Wouldn’t it be nice if things remained the same? If our loved ones didn’t age into oblivion but instead stayed healthy and happy once they reached their age of maturity.  When I was a kid, I think I thought this was how the world worked. But unfortunately, it doesn’t.  The only thing you can count on is that every once in a while you will get thrown a curve ball and life as you know it will never be the same.

So how do you deal with change?  Mental health professionals advise living in “the moment.” That seems like good advice, but what if you “moment ” is a living hell? What if you are caring for an aging parent or sick child?  What if you are battling your own health issues?  Where do you get the strength to deal with the fear, anger, sadness and frustration that normally result from these situations? The answer is actually inside of you and here is how to find it.  First, take a deep breath.  Try to look at the situation  as someone on the outside looking in. What would other’s think or feel if they were in your shoes? Would you expect them to be scared? Angry? Depressed? Those all seem to be normal reactions to the type of change they are experiencing, right? So why do we beat ourselves up when we feeling this way? Is it because we feel inadequate? Do we feel weak?  Those are normal feelings too, especially if you are not accustom to taking care of someone or if you have been doing it for a long time and are simply running out of gas. If you are feeling these things, it is okay to feel them. However, it is not ok to dwell in those feelings for too long.  The key to dealing with all this is to feel the feelings then move on.

Change makes us feel out of control.  So many of us have been taught to always be in control. For many of us, it has become our security blanket, but in some cases it does more harm than good. We need to let go the notion that we have control, because realistically, we don’t have control over very much that happens in our lives. Fighting change leads to frustration.  Frustration can lead to anger. Anger turned inward can lead to depression. Once we learn that we don’t have to control what is happening to us, believe it or not, things will begin to  feel better.  If we look at change as an opportunity instead as another road block thrown in our path, some interesting things may start to happen.

In Melody Beattie’s book, The Language of Letting Go, Melody states ” Controlling is self-defeating. It doesn’t work. By over extending ourselves to make something happen, we may actually be stopping it from happening. Force yourself to let it go. Put as much energy into letting go as you have into trying  to control the situation. ”

There will be many times in our lives when we don’t understand why things are changing.  But the best way to deal with this is to trust that whatever is happening is meant to be and that it is a process that will make us stronger and take us to something good.  Let’s face it, we have all gone through changes in our lives;  major changes and we have survived. We may be a little older, a little more tired and a bit weary, but we can still get through even the toughest times if we continue to believe in the process and believe in ourselves.

Having a difficult time dealing with change or have you found a new way of dealing with it?  I’d love to hear about it.  Email me at

The Language of Letting Go by Melody Beattie:

I Have to Leave You Now:


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Writing is not life, but I think that sometimes it can be a way back to life.”

-Stephen King, On Writing: A Memoir of the Craft.

In June of 1999, Stephen King was walking near his home in North Lovell, Maine and was struck by a minivan. His injuries were serious and his recovery was long and difficult. He credits writing as the thing that helped him get through that difficult time. You don’t have to be a New York Time’s Best Selling author to write. All you need is a pen and paper or lap top or IPad, or whatever you choose as your instrument and a private place to gather your thoughts and write. Sometimes it doesn’t have to be a private place. I have written in the back seat of the car on vacation, on a crowded flight to Italy and in a Hospice while taking care of my mother-in-law.

Writing is something you do for you. No one has to see it unless you want them to. Writing is a safe way to purge your frustrations and can help you get some insight about your feelings. I have kept a journal of my writing for many years. I like keeping a journal because it gives me a place to look back on when I am going through a rough patch. I can look back in my journal and see how I was feeling in the past and what I did at the time to feel better or to resolve the situation.

During my mother’s illness, I didn’t know how to cope with the feelings of resentment and anger that were bottled up inside of me. Even though these feelings are common when you are a caregiver, especially if you have been a caregiver for a long time, I didn’t feel comfortable talking to family or friends about how I felt because I was embarrassed and felt ashamed. I turned to journaling and found a way to safely and effectively get those feelings out and work through them.

Studies have shown that writing your feelings down can be just as effective as talking it out and it’s a way to vent your feelings privately without hurting anyone. Being able to see on paper the cause and effect of what is going on in your life increases your ability to successfully deal with those issues.

The writing will come slow at first, like the trickle of a faucet, but then it will come faster and soon it will be like that faucet has been open full blast. It’s most effective when you can write like no one is going to see it because that is when the deepest darkest feelings come through. It’s very cathartic. You can keep your writing in a private journal or tear it up when you are finished. Some people find that writing out their thoughts and then setting them on fire ( safely of course) is a way of releasing their pain.

Writing as therapy is available 24 hours a day, you don’t need an appointment and there is no copay. Writing is another tool in our tool box for dealing with what life throws our way. Writing can be a way of finding ourselves and finding our way back to a happy life.

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How to Get the Most from Your Doctor Visits:

  As many of you know, I am a medical administrator and work for a family practice physician’s office. My job is to field complaints and issues patients have regarding their care.  Whether it be treatment received by the staff or physician or problems with insurance. It’s my job to get to the bottom of the issue and resolve it. One of the most frequently asked questions patients ask is “How can I get the most out of my time with the doctor.”  I get this question a lot from caregivers, because many of them feel invisible when it comes to taking their loved one in to see the doctor. Many of them feel they don’t have a right to step in and ask questions on their loved one’s behalf.  Caregivers have every right to ask questions regarding their loved one’s health care.  Many times they are the only voice their loved one has.

Getting your loved one to the doctor’s office can be difficult. People with dementia don’t like changes in environment and waiting in a strange place for an extended period of time can be stressful. Whether the appointment is for you or your family member, there are steps you can take to lessen the stress associated with doctor’s appointments while also insuring that you’re provided with treatment and information you need for you or your loved one at the appointment.

Below are 8 tips to help you prepare and get the most out of your doctor’s appointment:

  1. Come prepared: Write down your questions and concerns. Has anything changed with your or your loved one’s health? Tired, aches and pains? Shortness of breath? A skin rash or mole that has changed or bleeds? Difficulty with bowel or bladder. Unable to sleep at night? No appetite? Unintended weight loss or weight gain? Write your questions down before your appointment, so you don’t feel rushed. At your appointment, give the list of questions to your doctor at the beginning of your visit. That way they will be addressed right off the bat. This information will also give the doc an idea what is going on with you or your loved one and will direct the visit towards those issues.
  2. Bring your medication bottles: All of them: vitamin supplements, over the counter medications, even the ones from other doctors who are treating you. This is very important. Your doctors need to know what medications you are currently taking in order to avoid any drug interactions. Common vitamins and dietary supplements can interfere with other medications you may be taking. One example is Tums, a common over- the- counter remedy for indigestion can reduce the effect of Cipro (an antibiotic used to treat urinary tract and lung infections) by 40% by limiting the antibiotic’s absorption, which could result in inadequate treatment or may cause other complications.[1]
  3. Be on time:  This is the most contentious aspect of patient care. No one likes to sit in a crowded waiting room for a long period of time. Contrary to common opinion, doctors are aware of this and are also aware of how valuable your time is. Granted, things do come up like emergencies in the office or at the hospital. Physicians are dealing with people, and sometimes they need more than the allotted appointment time for their treatment.  As important as it is for doctors to respect your time, it is also important for you to respect theirs. If you are not there at your appointment time, that will delay your appointment as well as back up the schedule for someone else. Sticking to the schedule may be difficult sometimes but for the most part, doctors make an effort to keep on time with their schedule. If your loved one has difficulty waiting, you can call the office 30 minutes before your scheduled appointment and ask if the doctor is on time. That way arrangements can be made for you to come in later or reschedule if need be.
  4. Leave the family/neighbors/friends at home: If you are an adult and do not suffer from dementia, it is best for you to be the only one in the exam room in order to avoid interruptions from another person. This is your appointment. It’s your time with the doctor.  If you do require someone to be with you or if you want someone there as a second set of ears to hear what the doctor is saying regarding your treatment, ask them to please be courteous of your time and the doctor’s time by not asking the doctor to treat their medical issues. If the doctor needs to address someone else’s medical problem during your visit, it will take time away from your care and will infringe on the next patient’s visit. This is one of the most difficult and sensitive situations for physicians to deal with.  Most people think it should be no problem for the doctor to treat them during your visit. After all, he’s their doctor too so why can’t he look at the rash on your back or go over your lab work from three weeks ago.  It’s not that doctors don’t want to help- they do. But people need to realize that treating another patient on top of the one that is already scheduled takes additional time and resources. It takes time away from the patient that scheduled the visit and will take time away from the patient waiting in the waiting room. There is so much more to treating a patient than people are aware of. There are important protocols that must be followed in order to provide quality care.  If your family member or person accompanying you to your doctor visit is sick or has a concern, it is best for them to schedule a separate appointment. That way they will receive the doctor’s undivided attention to their medical issue without taking time away from your appointment.
  5. Bring your driver’s license or other government issued form of identification and your current insurance information: In order to make sure you receive the benefits you are entitled to, the billing staff needs a copy of your current insurance card. With the Affordable Care Act in full swing, many insurance networks are narrower, which means the doctor you saw last year may not be on the plan this year. Knowing your insurance coverage helps the medical staff direct your care to the providers who are on your plan. If your insurance has changed, you need to make sure the office staff knows and that the physician you are seeing is a provider for your current insurance. It is important that you are aware of this because you may ultimately be responsible for any charges incurred at the visit.  You can call the insurance company or call the doctor office to verify this information.   Verifying that your doctor is on your current plan will help you will get the most out of your benefits.
  1. During Your Visit: If this is your first visit to the doctor make sure you not only have a current list of your medications (Preferably the actual medication bottles), you should have a list of any allergies-medication as well as non-medication allergies. This information is extremely important in regards to your health care. For example, patients who are allergic to eggs should not receive the flu vaccine because one of the base ingredients is eggs, so it’s important for your doc to know what, if anything you are allergic to. Also, if this is the first time you are seeing this doctor, you will need to know your medical history and your immediate family’s history as well, including any surgeries or serious illnesses. If this is a follow- visit, be sure to let your doctor know how previous treatment worked or not. This will help your doctor decide what treatment will need changed or if staying the course is appropriate.
  1. Communication: If at any time during your visit, you don’t understand the treatment your doctor is prescribing, don’t be afraid to say “I don’t understand”, or “could you explain that in a little more detail.” It is imperative that you understand what your doctor is prescribing and how it is going to help. It is also important to understand what if any side effects may occur. This is especially important when it comes to medication dosage changes or new medications being prescribed. Also, be sure to tell your doctor if you need refills on any of your medication. This is the best time to address your need for refills since your doc will have you chart right there and will be able to go over your medications with you while you are still in the room. Before you leave the office, you should be presented with a print out of your care plan or a summary of the visit. In that care plan will be all the details of your visit including a list of your medications and any changes made. This is a valuable tool since you can take it home and refer to it as needed.
  1. After Your Visit: If you feel like the treatment isn’t helping or you are feeling some ill effects from the treatment do not hesitate to call your physician’s office and report any adverse reactions to medication or other treatment. Below is a guideline of symptoms and when to call:
  1. Shortness of breath, itchy rash, lightheadedness, dizziness, sedation, fast heart rate ( tachycardia), heart palpations or a drop in blood pressure upon standing (orthostatic hypotension)  call your doctor immediately.  If it is after hours, go to the emergency room or urgent care as this may be a serious or life threatening complication.
  2. GI Upset, headache, fatigue. These are some of the most common side effects of medication, but they can also be related to a new or worsening illness.  If any of these are an issue for more than a few days, call the doctor’s office and let them know what’s going on.
  3. Fever: If you have been treated in the office for upper respiratory infection, urinary tract infection or are experiencing abdominal pain and develop a fever above 100.8 please call your doctor.  You should not experience fever once on antibiotics and a spike in temperature may be a sign that something else is going on.  As a caregiver, it is important to take care of yourself as well as your loved ones. It is important for you to have periodic check-ups with your physician and to address any medical issues that may come up. Caregiver’s health is the first thing to go by the wayside while taking care of someone who is suffering with a chronic illness like Alzheimer’s disease. Caregivers have a tendency to think that their well- being doesn’t matter because their loved one is more seriously ill.  If you don’t take care of yourself, then who will take care of them if you can’t?  Developing a good relationship with your family doctor is essential to receive the best care possible. Don’t be intimidated by the white coat.  Medical personnel want to help.  But they can’t do it alone.  In order to receive the health care you deserve, you have to be an active participant. If you don’t speak up for yourself, who will?

(What are some of your concerns when going to the doctor?  Comment here or email me at

[1] Frost RW, Lettieri JT, Noe A, et al. Effect of aluminum hydroxide and calcium carbonate antacids on ciprofloxacin bioavailability. Clin Pharmacol Ther. 1989a;45:165.  Cited 12/23/2014

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Dragonfly Publications

Blog: The Cheese Stands Alone- When Family Members Refuse to Help.


Maria V. Ciletti

“In our ability to think about something differently lies the power to make it different.”
Marianne Williamson

Without a doubt, care giving is a difficult job and all too often it can be a lonely job too. The number one struggle care giver’s experience is lack of help and support from family. Care giving is a 24/7 job with no vacation time, no breaks or holidays. There is nothing glamorous about care giving. It is hard work, but it is necessary work. In a perfect world, when a loved one is diagnosed with such a devastating disease as Alzheimer’s disease, family members would pull together and work for a common good- taking care of their loved one. Everyone would share in the responsibility of managing and PARTICIPATING in their family member’s care. Some families do pull together in difficult times but unfortunately many do not.

In many families, there is one person whom all the care giving duties fall upon. They have been deemed the caregiver because they are married to the person needing care, or they are single, or retired, or don’t have children to take care of, or simply because they are female. Sometimes they are elected because they are the one who lives the closest to the loved one needing care. Many times this person is thrown into the caregiver role unwillingly or by default because there is no one else to take on the responsibility. Regardless of how they got there, they are now the person responsible for their loved one’s health and well being. They are now responsible for almost every aspect of their loved one’s life. They are the person who picks up prescriptions, manages medications, juggles doctor’s appointments, prepares meals, grocery shops and keeps up the house.They are the person who has to leave work to take their spouse or ill parent or other family member to doctor’s appointments or therapy sessions. They are the one’s who are called out of important meetings to come home to calm their loved one down because their loved one has becoming belligerent, demanding to be taken home and trying to leave, when they in fact are home and don’t realize it. The caregiver is the one who may need to quit their job in order to take care of their loved one. Caregiver’s are the one’s who sit vigil for hours in waiting rooms, waiting to talk with physicians regarding the outcome of their loved one’s procedures as well as their prognosis, which will dictate the next set of challenges they will need to take on.  Caregivers are the one’s who must convince their loved one’s that it is time to take a shower and in the process wrangle the clothes that they have been wearing for a week away from them so they can be washed. Caregivers are the people who are awakened in the middle of the night to clean up explosive diarrhea, find lost dentures in the bed sheets or, one of the most frightening, take a late night trip to the emergency room. The caregiver is the person whom the ill family member moves in with when they can no longer live by themselves.

Caregivers give up huge chunks of their lives in order to care for their loved ones. Caregivers are the people who put their own health on the back burner in order to take care of their loved one’s health needs. They are the one person the entire family counts on and assumes will take care of what ever comes up, because they have done it for so long and so well. That fact is why the notion that the caregiver may not want to do this or would need help doesn’t even cross the other family member’s minds.

When I hear about family members refusing to help I think of the song “The Farmer in the Dell.” In the song, everyone pairs off and leaves, leaving the cheese to stand alone. That’s how most caregivers feel- like the cheese- alone. I know thats how I felt many times, when others were too busy to help, too clueless to know help was needed or just didn’t want to be bothered. Some family members simply live too far away to help. But that doesn’t mean they have no responsibility for their loved one’s care. Many family members feel they are filling their care giving obligations with plenty of “ advice and suggestions” for how YOU as the caregiver can do the job better. But usually none of those suggestions comes with any “hands on” help on their part. Not only does this add fuel to the fire of a difficult situation, it can build a wall of resentment that may never come down.

Some family members want to help and make a genuine effort to do so. Some want to help, but don’t know what to do. A way to remedy this is to ask them for what you need and accept what ever they have to offer. I think it’s important to accept what ever they have to offer, even if it isn’t exactly what we asked for because it is something and quite possibly could lead to more. Also, if we don’t ask for help, how else are they going to know what we need? From their point of view, their loved one is being cared for and everything is going along smoothly. Trust me, they have no idea what you are going through.

Even if they just offer to go to the grocery store, or sit with your loved one for a hour while you run errands or take a bath or just drive around town alone in your car because it’s the only place you can find peace and solitude- let them. It may seem like a small thing, but it is something. Accept the gift graciously. Try not to condemn your siblings, spouses, children whom you perceive to be useless or insensitive because of their lack of inaction. Instead, take a step back and try to see what’s really going on with them. Not everyone has it in them to take on the huge responsibility we as caregivers have taken on. Tenacity, perseverance, dedication, patience and unconditional love are our superpowers- not everyone has that. I, for one am guilty of downplaying family and friends offers to help. My first thought is that they really don’t mean it and they are only offering because it seems like the polite thing to do. Secondly, I feel that I am the only one who can do this they way it needs to be done. So it is just easier for me to do it myself. But in a way, isn’t that a bit egotistical? Many of us suffer in silence. And that really isn’t helping anyone. We need to speak up and tell those close to us what we need from them. Give your family a chance to help. Provide them with the information and tools that they need to step into your shoes once in a while. Even if only for one chore, one doctor appointment or one afternoon visit. It’s something and might help you not feel so alone in all this.

Anger and resentment are normal feelings in this situation.When we as caregivers spend hours, days, weeks, and in some cases- years, caring for someone that we may or may not have had a good relationship with in the first place, things can get dicey. Resentment comes from the fact that we as caregivers feel saddled with this huge responsibility and do not have the freedom to enjoy our lives like everyone else. Caregivers often feel like they are missing out on some of their most important years and the joys those years should bring. Not only do they feel like they are missing out, they feel guilty for feeling that way. After all, their loved one is dying. What gives them the right to want to enjoy life when their loved one no longer can? Feelings of anger and resentment may be normal in this situation, but after a while, feeling this way doesn’t help you or your loved one. These feelings can sap any positive energy you can muster in a situation were we need all the positives we can get.

If after you tell family members what is needed and they refuse to help, the best thing to do is move on. Don’t put anymore energy into trying to convince them that you need their help or their loved one needs their help. Move on and look for another solution. Lets face it, we can not control what others say or do or don’t do. The only person we have control over is ourselves. Each moment we spend bitter, resentful or angry is a moment wasted over something out of our control. Is it fair that we as caregivers are burdened with all the responsibility of our loved one’s care?- absolutely not. But in order to do what has to be done- we have to let go of our anger and move on. You have to believe in your self and know that in reality, the only person you can depend on is you. I found out near the end of my Mom’s life that I just didn’t have the energy to waste on people who didn’t care. It got to the point where I felt if you aren’t here to help, get out of my way so I can do what needs to be done. The last year of my mother’s life was extremely difficult. Her behavior became aggressive and almost impossible to deal with. No one wanted to be around her. Because I was still working, we employed a in home caregiver to stay with her during the day, which helped for a while. Then because of safety issues, we had no other alternative than to place her in a locked Alzheimer’s facility. Placing a family member usually creates an upheaval from other family members who feel you should do everything you can to keep your loved one in their home, especially if you promised to do so in the very beginning. (A promise no one should make because it is almost impossible to keep.) This brings on a ton of guilt for the caregiver who has to make the decision on placement. Many caregivers, me included, feel like they have failed their loved one when they can no longer keep them at home. But it’s definitely not a sign of failure. Placement is often the next step in the care giving process and is one of the hardest decisions to make. This is where believing in yourself comes in. You have to believe that you are doing the right thing for your loved one even if it isn’t the most popular decision. When others criticize, but offer no other solution, they give up their vote. It’s as simple as that.

When you are dealing with a terminal illness, time is precious. Alzheimer’s disease is a progressive disease. It’s destruction moves forward every day and nothing can stop it. Wouldn’t it be better to find as much joy in the days our loved one’s have left than drown in the misery of the situation? Granted those moments may seem few and far between, but isn’t finding some joy better than not finding joy at all? Any one who has taken care of a loved one with Alzheimer’s knows that at times, our loved ones experience tiny moments of clarity. We went through months when Mom didn’t know who we were or what was going on, then all of the sudden-it’s like a wire reconnected in her brain and she was a lucid as she was ten years ago. It only lasted a few moments- but they were precious moments. Those are the times we need to cherish and pay attention to.

Caring for someone with dementia is one of the most difficult things you will ever do. But it can be the most rewarding thing too. Everyone wants to throw in the towel from time to time. I certainly did-more than I care to admit to. There will be many times when you will feel like the cheese. Don’t be the cheese. Doing the best you can with the resources you have is all anyone can ask. There are many resources out there. ( See links below.) Once I spoke up and found people who were willing to help, it gave me the chance to recharge and gave me the strength to get back at it. Nothing is more loving than helping our loved ones on their journey in this dark and scary place find comfort and peace. It is my hope that all caregivers find comfort in knowing they are doing the best that they can with what they have and that it is enough. Compassion is the greatest gift we will ever give to our loved ones and most importantly it’s the greatest we can give to ourselves.


Dragonfly Publications
Care Tips for Dementia Caregivers

Here is a true-life example of why patient advocacy is important:
One afternoon, my mother, who at the time, because of her advanced Alzheimer’s dementia, was living in a nursing home, suddenly started vomiting large amounts of blood. The nursing home appropriately called a squad and sent her to the nearest hospital. Unfortunately the hospital they sent her to was not the same hospital where she was usually treated.
I was at work, so when the nursing home called me to let me know what happened, it took me about thirty minutes to wrap things up at work and to get to the hospital. When I got to the ER, the receptionist told me mom had arrived and was in treatment bay 1. I walked over to bay 1, a curtained area across from the nurse’s station and inside I heard someone say in a not-so-pleasant voice, “C’mon Grandma- hold still while I get this gown off of you.” Then I heard- “Oh no we are not gonna fight about this Grandma- you are gonna do what I say and we will get along just fine.” I immediately pulled back the curtain and found my mother half dressed in a blood soaked gown, crying and a nurse’ s aide struggling with her to get her out of it. The aide jumped back and seemed stunned by my abrupt entrance.
“What was going on? I asked.
“Grandma here won’t let me help her out of these messy clothes.”
“She is not your grandma,” I said (This woman calling my mother grandma seemed derogatory to me). “She’s my mother and she has dementia,” I said. I walked over to mom who was trembling. “Talking to her that way is scaring her.”
“What way? The aide said, her voice indignant. “I didn’t do anything wrong,” she said. “She just won’t do what I tell her to do.”
I couldn’t believe what I was hearing! How could this person be working in an emergency room? You can’t tell me this is the first person with dementia she has ever encountered. I took a deep breath.
“She doesn’t understand what you want her to do. You have to talk to her-slowly- softly and gently,” I said.
The aide looked at me as if I were from another planet. “Well then if you think you can do a better job- I will leave this up to you,” she said and then walked away.
I felt my face heat up with fury. My plans were to report this incompetent aide- and I would do that soon- but right now Mom needed taken care of and right now I was the only one she could count on. I got Mom calmed down, undressed and into a clean gown. Shortly after that a lab tech came in and drew several vials of blood. An hour later, mom was wheeled down to radiology for a CAT scan of her abdomen. After about a two hour wait in the ER, Mom’s lab work came back showing that she was severely anemic and in need of a blood transfusion. They still did not know where she was bleeding from because the CAT scan results were negative. Mom would need admitted to have the transfusion overnight and a GI consult was ordered to find out the source of the bleeding. Six hours went by until finally a bed became available on a general medical floor. It was after midnight by the time I got mom in her room and settled. A medical resident came in and performed a history and physical on her. He said that someone would be in to draw more lab work so they could type and cross match Mom’s blood, so they could order the blood she needed from the blood bank and then they would start the transfusion. He estimated by how low her blood count was (Normal blood count is 14 gm- Mom’s was 5 gm!) she would probably need two units of blood. I asked him when the GI doctor would be in to see her. He said probably not until the morning when he makes his rounds. This took me back a bit. Obviously mom was bleeding from somewhere- enough for her to require two units of blood. Granted she hadn’t vomited blood in the last few hours, but wasn’t it important to find out what was going on? Mom was getting weaker as the hours ticked by. At one o’clock the type and cross match bloodwork was drawn. Hopefully this would get things started.
Three o’clock- no blood transfusion. Four o’clock- no blood transfusion. Finally I went out to the nurse’s station to see what the hold- up was. The ward clerk looked up the lab results and told me they were still “pending.” As soon as the results were back someone would be in to start her transfusion. At six o’clock-the sun came up but still no blood. I went back out to the nurse’s stations where a fresh shift of nurses had just arrived. I told one of them that Mom was in room 1123 and was supposed to get a blood transfusion last night, but still had not and could she look into it. She assured me she would as soon as she got report. I never saw her again.
Mom slept off and on through the night, but now seemed more restless and was having difficulty breathing. I felt for her pulse- it was 130 and thready (weak). She was receiving two liters of oxygen through a nasal cannula, but that wasn’t doing much good as she was totally mouth breathing now. Around nine-o’clock mom’s IVAC beeped because the IV had gone dry. I let it beep hoping that someone would eventually come in and take care of it. Finally a nurse came in and hung a new bag of IV fluids and checked mom’s vitals. Her BP was 60/40.
“Does her blood pressure always run this low?” the nurse asked.
“No-her blood count is low and she was supposed to get a blood transfusion last night. Is the blood ready yet? The nurse flipped through her notes. “Looks like we are still waiting on the type and cross match,” she said.
“They drew that at one o’clock last night- how long does it take to run a goddamn lab test?” I snapped.
The nurse took a step back.
“Look, I’m sorry. I’ve been here all night. No one has so much as brought my mother a glass of water. Can you find out what is going on? She’s bleeding from somewhere and the ER doc ordered a GI consult. Can you find out when the GI doc will be here?”
“I’ll call down to the lab and find out about the blood. I don’t know when the GI doc will be in-sometime this morning I would imagine,” she said and left the room.
I dozed off in the chair next to mom’s bed but then suddenly woke to a severe pain in my neck and the nauseating smell of hospital food. I looked over at Mom. She was sleeping. Noisily breathing with her mouth wide open. I looked over at the IVAC pole-still no blood. I looked at my watch- it was noon. I had had enough.
I marched out to the nurse’s station and asked to speak to the nursing supervisor. I was told she was in a meeting.
“Ok then I want to speak to the medical director,” I said.
“Is there a problem?” the ward clerk asked.
“My mother is in room 1123. She has been in this hospital for nearly twenty-four hours. She is severely anemic-bleeding from somewhere that no one seems to care about. Her pulse is weak. Her blood pressure is low. She was supposed to have a blood transfusion last night- that never happened.”
“Ok-ok, I’ll get her nurse,” the ward clerk said.
Mom’s nurse-another nurse I had never seen before but who was now deemed “Mom’s nurse” appeared at the nurse’s station. I went through my spiel again. She said she would check on everything and let me know. I snapped- that answer might have worked last night but it wasn’t working now.
“Look–I want my mother transferred out of here,” I said. “You people obviously do not know what you are doing. And because my mother is elderly and demented you don’t think she deserves your time. I want her out of here- I want her transferred to her regular hospital and I want her out of here now.”
The nurse and the ward clerk looked at me as if I were about to take them hostage. I knew by the looks on their faces that they now saw me as a problem- an irrational, possibly dangerous, over protected family member-the hospital staffs worse nightmare! But my behavior got results. Although it took them another two hours to process the paperwork, Mom was transferred safely to her regular hospital.
The actual transfer took thirty minutes. Once at mom’s regular hospital, she was taken to the GI lab for a STAT endoscopy. There the GI doc found two huge bleeding ulcers in her stomach that he was able to cauterize. He then admitted her to a medical floor where UPON ARRIVAL to the floor she received two units of blood. After the blood transfusion, her vital signs improved. She even woke up a bit and was more alert-something we hadn’t seen in quite some time. In two days she was discharged back to the nursing home. Thankfully Mom had a good outcome. Had I not insisted that she be transferred from the previous hospital, I knew she would no longer be with us.
This is why patient advocacy is so important. Not only for our loved ones with dementia, but anyone who is ill. Whether you are taking a family member to the emergency room or you are going there for treatment yourself ALWAYS have someone there with you. Everyone needs an advocate who can speak up for them. Not all hospitals are like the first hospital Mom was admitted to. The majority of hospitals employ competent, caring staff. During Mom’s illness she received wonderful care form most of the facilities she was treated in. But there will always be one event that you need to be on the look- out for. If you see something that doesn’t seem right- speak up. This is the time to ask questions and ask for clarifications. Do not feel intimidated. Do not feel you are bothering the staff. It is your right and your loved ones right to know what is going on. Dealing with health care professionals should be comforting- not confusing. When your loved one is being treated you should feel confident that they are being treated right. If you don’t speak up, the consequences can be devastating.

A good advocate needs to be assertive and have good communication skills. This is especially important when dealing with new health care providers that do not know your loved one or their history. Every medical event requires you as advocate to pay close attention to new symptoms as well as new treatment and medications ordered. Granted medical staff are human and humans make mistakes- trust me- I have seen it happen. There will be times when things just don’t seem right. This is when you will need to speak up. If you are not getting the answers you need- leave. Take your loved one to another facility for treatment. It is better to be safe than sorry later. If you don’t act- it could mean your loved ones life.