Lovingly dedicated to the memory of my mother, Rosa Gleason. I miss you Mom.

When facing an extended stay in the hospital or nursing home care for a loved one, there is so much to consider and do, that most family members are either uninformed, intimidated, or both. It can be a very frightening as well as stressful time for both the patient and family. Some things cannot be helped, but many can. I would like to share from my family's experience a few helpful suggestions to help make your experience safer and less stressful.

First and foremost it is important that at least one family member be familiar with the condition and treatment. To do this get to know the doctor or doctors treating your loved one. Let them know who you are. Ask questions; if you are truly interested in the care and treatment given, the doctor and nurses will sense and respond to it. The more familiar you are with your patient's condition, symptoms, and treatment, the more helpful you may be in an emergency.

When the doctor of record is not available, the on call doctor may not be very familiar with your patient. If hospital staff is also not very familiar with your loved one's condition, this is the time to communicate. Do not be timid. A good doctor will appreciate any constructive input that you have. You can make a difference.

In my mother's case, the type of seizures that she experienced began with numbness and eventually what appeared to be paralysis to the left side of her body. But when she received medicine to stop seizures, her left side returned to normal. On those occasions that we had to go to ER without her doctor, precious time was saved when I or my sisters could explain this to the ER doctor.

Ask for specific information about medicines. Write down the names and scheduled doses of medicines. Then research them. A druggist has access to the information that you want and he or she will be happy to give it to you. The pharmacist will also explain anything included in this material that you do not understand, just ask. This may seem like an extreme measure, but it can be important later on. In my mother's case a medication was prescribed for one problem but it complicated another. When I got a printout on the drug and read the precautionary information, I discovered that to patients who have seizures, acute liver trouble, ... both of which my mother had, it should not be given. To do so could prove fatal. I discussed this information with her new doctor, and had her taken off the medicine. Do not be timid. If something you find out about a drug concerns you, ask the pharmacist, nurse, or doctor to check it out. You may sometimes find that medical personnel may be unwilling to admit a mistake, but they will always want to correct one if allowed to do so gracefully. A very common way for this type of mistake to occur is to have two or more doctors treating the patient at the same time outside of the hospital or nursing home prior to admission, who are not aware of this fact.

Be sure to identify yourself. Give a phone number and make sure it goes on the chart. Visit at different times to get a chance to meet all the shifts. This will also give you the opportunity to observe medicine given, meals,baths, and doctor visits. If your loved one has a condition that is out of the ordinary, ask that a large note is posted on the door and the wall in the room. For instance my mother experienced short term memory loss. Her mind was in tact but she could not retain new information. It was a comfort to her to read the notes and notebook that we made for her, explaining that she was OK, that she had lost her memory not her mind. This was very important to Mom's state of mind, which also affected her state of health. But just as important was the constant reminder to the staff that Mom could not remember if she had gone to therapy that day, had a meal, had any visitors,etc. .... Sometimes the staff will ask a patient for information, and if they are not aware that the person has a short term memory problem, the nurse or aide may act on information obtained by the patient that is invalid. Many times we encountered this very problem in Mom's case and we had posted signs and notes all over the room. Nurses and other staff are very busy and involved in the care of many patients at any given time, therefore even your best efforts may need a little boost. Gently remind the caregiver that Mom cannot remember or Mom cannot hear, or Mom is unable to see clearly, or she cannot read etc.....

Check the chart. If you are a family member, you have a right to see it under most circumstances. You may need help interpreting it; the nurse will (should) be willing to do so.If something seems to be a problem, don't be accusatory or critical; just inquisitive. However don't be intimidated, tell as many people as is necessary until the problem is corrected.

Mistakes are made in hospitals and nursing homes every day. Most of the time they are not life-threatening but they can affect the comfort and recovery time of your loved one. The more you can monitor the care given, the more likely you are to catch and prevent these mistakes. But you must not be timid. If the doctor gives new orders that are not carried out speak up. Shift changes can cause changes in the chart to be overlooked. If a nurse or aide says he or she will bring medicine, don't leave until it comes. Continue to ask questions. Try to become familiar with medical terms and conditions.

Inquire, don't interrogate. Do not be surprised or put off by nurses, doctors, and other medical personnel who do not appreciate your questions and input. You have a right to information concerning the care and treatment of your loved one, and if he or she will not cooperate, others will. If you find the situation intolerable, and no one on the floor will help, administration is your next point of contact. Don't give up. I found it necessary on several occasions to follow the ladder up to the top rung to get help for my mother. It was not a pleasant experience for me, because like many others, I would prefer to be liked by everyone. However my mother's health was my main concern, and so it should have been.

If you can be available anytime, let the nurses know. Hospitals and nursing homes are open 24 hours a day. You can call during the night (at the nurses station). Most of the time things are quieter and more calm during the late night and early morning hours. This is a good time to check on things. The nurse can check the chart and let you know how your patient is and what went on that was noteworthy that day. It has been my experience that the nurses were almost always very glad to talk to me and answer any questions that I might have, no matter how silly or insignificant it might have seemed. However not all nurses are as accommodating. I had to learn that I didn't have to win the affection and approval of the entire staff. I simply worked to cultivate a good working relationship with those who were willing to work with me. Another point to remember, is that sometimes aides will give you information that others aren't willing to.

Pay attention to changes in the patient's physical or mental condition. To the doctor or nursing staff this person is a patient, but to you this is Mom, Dad, Son, or Daughter, You may notice things that they may miss. Confusion in a patient may indicate any number of problems, and it should not be ignored. Nursing staff may assume that this is normal behavior if they are not very familiar with your loved one on a day to day basis. Remember that nurses sometimes float from floor to floor and your doctor may be unavailable. For this reason and many others, it is up to you to make them aware of new developments in your patient's condition. Communicate. Check for bed sores. Make sure baths are given regularly and bandages are changed as needed. Hospitals now date bandages when they are applied. Ask at that point when the bandage should be changed. Write it down. A notebook is helpful. If you do have an occasion to report a serious problem, a journal of events as you know them will help youto get results.

When looking at nursing homes, visit, visit, visit...Talk to visiting family members of other residents, nurses, aides, kitchen help, and the residents. Pay close attention to the overall atmosphere. Is the staff cordial to all the residents? Do they show kindness and respect for all the residents? Before deciding on a nursing home, check it out. Ask to see any and all information pertaining to any citations they may have received from the state. They have to reveal this to you. If there has been any citations, what plan of correction did the home submit? How do they handle wandering patients? What is the admissions policy, if you will need a new doctor? Is there a doctor on staff ? Meet him or her! Do you want this doctor to treat your loved one? How accessible is this new doctor? If the doctor is not available at the time of admission, what plan does the home have for obtaining the medication needed until the doctor can examine the patient? If the answer to any of these questions is unsatisfactory, find another home.

When you have made your decision make certain that you are there at the time of admission. This is absolutely essential. Medication should be available upon arrival. The form that your doctor has to prepare before sending a patient to any nursing home in the state is called a 90L. This paper is to insure that medication is waiting for the patient upon arrival if necessary. It is also a valid doctors orders to be used in lieu of examination by the new doctor for the first 24 to 72 hours. There is no excuse for not having medication available upon arrival. Examine the paperwork closely. Make sure there are no questions in your mind or the nurses' about what to give your mom or dad. Do not assume that just because things look good and there is trained medical staff that your loved one will receive proper care. You must be involved on a regular if not daily basis.

In my mother's case she was stable when my family had to move her to a new facility outside of this area. The home we located was only 10 minutes from one of my sisters, so we were able to monitor her care. However we made assumptions that cost us dearly. The paperwork was sent ahead of and with her. We assumed this was sufficient. My sister arrived one hour after my mother did and discovered that the nurse was filling out paperwork with information obtained from Mom. When my sister pointed out that Mom couldn't answer these questions accurately because of her memory loss, the paperwork was put aside. None of the information that Mother gave her was deleted. We assumed that it had been. My sister did not meet the doctor on staff, nor was she told that he had not been reached to admit Mom. Medication was not obtained but we were not told. We assumed that all was well, when in fact the doctor was not available the next day either and again no medication was given. We assumed that all was well.

When early seizure activity was noted by my sister on her second visit of the day the nurse's comment led her to assume that medication had been given because the nurse said "don't worry honey, we'll take care of it. You go home and get some rest." She nor anyone else told either of us that Mom had not gotten any medication as of that time nor had the doctor on staff even admitted her yet. It wasn't until the following day that I was told by a nurse over the phone that Mom had not been receiving seizure medication at all. This information only came after I asked a nurse directly if my mother had been receiving any medication at all. My mother died the next morning. Oh the lesson we have learned. Be specific when asking about the care of a loved one. Evasive and casual answers should give you reason to be concerned. Don't shrug them off.

I take comfort in the fact that my mother was welcomed into Heaven on October 9, 1994 to enjoy all that God offers us there. We cannot go back and undo what has happened, but if someone else can be spared the pain and loss that my family has suffered, as a result of learning from my mother's case, then there too will be one more victory that Mom will
have achieved and her death will not seem so futile.

MY PRAYER

DEAR LORD HELP ME TO FACE AND ADMIT MY ANGER IN A CONSTRUCTIVE AND HEALING MANNER. I CANNOT GET PAST THE HURT AND ANGER I FEEL TOWARD THE NURSING HOME PERSONNEL AND THE DOCTOR. I CONTINUE TO SEE MY MOTHER STRUGGLING TO BREATHE, SEARCHING FRANTICALLY TO FIND ONE OF US THAT NIGHT THAT SHE LAY DYING ALONE. WHY DIDN'T I REALIZE WHAT WAS HAPPENING? WHY WERE WE NOT CALLED? WHY DIDN'T THEY TELL US THAT NO DOCTOR WAS AVAILABLE? DID THEY REALLY CALL HIM AND HE SIMPLY WAS NOT WILLING TO RESPOND? OR DID NO ONE EVEN
BOTHER TO CALL AT ALL THAT NIGHT? WHY DID THEY LET MOTHER SUFFER AND NOT CALL? WHY WAS I NOT SENSITIVE TO YOUR SPIRIT? WAS I JUST TOO INTERESTED IN SLEEP THAT I DIDN'T HEAR OR FEEL YOUR WARNING? WILL I EVER KNOW THE ANSWERS TO ANY OF THESE QUESTIONS? FATHER GOD, I'M SO ANGRY THAT I WANT TO SEE SOME OF THEM SUFFER AND ANSWER FOR THEIR ACTIONS THAT LED TO MAMA'S DEATH.

I WANT SOMEONE TO FEEL MY PAIN. I DIDN'T GET A CHANCE TO SAY GOODBYE OR JUST HUG HER. I CAN'T FACE MUCH OF THE ANGER THAT I FEEL WITHOUT YOUR HELP, FATHER, BECAUSE I HAVE BEEN SO GOOD AT MASKING IT FOR SO LONG. PLEASE HELP ME UNCOVER IT SO THAT I CAN OVERCOME IT AND BE FREE TO EXPERIENCE JOY AGAIN. A WIDOW ONCE STATED HOW GRATEFUL SHE WAS THAT SHE HAD BEEN ABLE TO COMFORT AND ASSURE HER HUSBAND WITH HER CONSTANT PRESENCE RIGHT UP TO THE POINT OF HIS DEATH. I RESENT THAT I NOR ANYONE ELSE IN MY FAMILY COULD BE THERE FOR MOM. IT COULD HAVE MADE A DIFFERENCE, I KNOW.

WHERE IS THE FORGIVENESS THAT I SHOULD FEEL FOR THOSE RESPONSIBLE FOR OUR LOSS? ANSWERS, ANSWERS, I SO NEED ANSWERS. PERHAPS BETTER STILL, I NEED CLOSURE, HOW I HATE THAT WORD. IT MAKES THE LOSS SEEM SO TOTALLY FINAL. WITHOUT CLOSURE, THERE IS NO GOING FORWARD. I AM READY TO SEE HEALING IN MY FAMILY. PLEASE HELP IT COME TO PASS.

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