There is wisdom in reducing attachment to material things. I have yet to reach that desired state, so a recent event was very upsetting to me. Mama was having breakfast at a table in her bedroom, and she knocked over her glass of prune juice. The big brown stain on the light-colored carpet in our home set off an explosion of intense emotions in me. Thoughts spun around in my head - "I try so hard to keep this room clean!" "How could that happen?" "I'll never be able to get the stain out!" "What else can go wrong!" "I can't do this any longer!" The message I want to share is that none of this explosion landed on Mama. I poured out my strong feelings later to my husband and friends, but I never showed anger, disappointment, or blame to Mama. Getting to this place of acceptance and self discipline took practice.
It was about eight years ago that I found out about Mama's progressive dementia. A geriatric care manager came to our home after the diagnosis to do a care assessment. She observed our family's interaction with Mama. One of her comments has remained with me - "You separate the person from the illness. That's very good." I wouldn't have thought of this as rare. In fact, I probably wouldn't have even noticed my behavior. Thanks to that excellent care manager, I have built on her observation and tried to develop my awareness that Mama can't remember to change her behavior to do better next time. Her life is lived in the moment. She doesn't respond to criticism except to further withdraw into her interior world.
Small dramas like the one I have described are repeated daily for many caregivers. Even the well-intended can lose their patience and find themselves in a disastrous cycle of blame and guilt. The next time one of these emotional events happens, remember the wise geriatric care manager - the illness is to blame, not the person. This new perspective can relieve tension and restore respectful behavior.
P.S. I attest to the powers of Oxi-Clean. With several applications, the prune juice stain disappeared.
Saturday, March 30, 2013
Monday, March 25, 2013
Better Conversations With Doctors
Are there some people who just don't listen to you? Sometimes, in the health care environment it seems difficult to get a doctor's full attention. With the best intentions, they assume they know what a person is going to say and interrupt to give the most likely answer. It's human nature to take shortcuts with the goal of making communication more efficient. On the receiving end of these shortcuts, however, the reaction can be "This person isn't listening to me and doesn't care about me."
There's more to an effective conversation than an exchange of facts. In the health care setting, the emotional state of patients and families also should be a key element - Are they confused? Are they confident in the physician and staff? What are their fears, their expectations? A doctor who understands how someone feels as well as how their medical condition should be treated, can respond with a patient-centered approach that reduces anxiety and conflict in the long term.
If you want doctors and staff to listen to you, consider these suggestions:
1. Listen to them. This sounds backwards - but it works! The reason people don't listen to you can be that they don't feel heard. Devote some effort to paraphrasing their part of the conversation. Use phrases like "It sounds like you're saying . . .", "What I'm hearing from you is . . .". This is a powerful technique that truly improves attitude and willingness to listen.
2. Be clear and concise in what you say. Rambling off the subject is an invitation for your listener to exit the conversation.
3. Assert your goal for the conversation and contrast what you're not trying to do - "I am trying to learn from you what may lie ahead for my mother. I'm not trying to take up too much of your time."
There's more to an effective conversation than an exchange of facts. In the health care setting, the emotional state of patients and families also should be a key element - Are they confused? Are they confident in the physician and staff? What are their fears, their expectations? A doctor who understands how someone feels as well as how their medical condition should be treated, can respond with a patient-centered approach that reduces anxiety and conflict in the long term.
If you want doctors and staff to listen to you, consider these suggestions:
1. Listen to them. This sounds backwards - but it works! The reason people don't listen to you can be that they don't feel heard. Devote some effort to paraphrasing their part of the conversation. Use phrases like "It sounds like you're saying . . .", "What I'm hearing from you is . . .". This is a powerful technique that truly improves attitude and willingness to listen.
2. Be clear and concise in what you say. Rambling off the subject is an invitation for your listener to exit the conversation.
3. Assert your goal for the conversation and contrast what you're not trying to do - "I am trying to learn from you what may lie ahead for my mother. I'm not trying to take up too much of your time."
Thursday, March 21, 2013
Improve Elder Parents' Medical Appointments
A medical appointment for my mother can be tense. The doctor and staff are tightly scheduled. My emotional and physical systems are in high gear. I am watching out for Mama, who is frail and tired. I am trying to listen carefully, remember the questions I want answered, and stay calm.
There is only a brief time to exchange information. What would they like to know about her? What do I need from them? The stakes seem high - Is blood pressure trending toward a risky level? Is more walking good or will it further injure the stress fracture? I need to understand what is happening.
How can these appointments become more relaxed and generate more satisfying results? Here are a few suggestions:
1. Make a list of specific questions in advance - e.g., "Can you give me a list of danger signs for someone with this heart condition." "How does her heart medication impact her blood pressure?" "What can we do to treat her swollen ankles?"
2. Ask up front how much time is available for the appointment.
3. Speak up! Clarify your goals at the beginning - e.g., "I am here because I want to work with you to provide Mama excellent medical care. I want to understand her condition, follow your instructions, and rely on you for advice."
4. Ask for an overview of how their practice works - e.g., "Help me understand how your practice is organized. We have met with the doctor once, now we're meeting with the nurse practitioner. Can we expect to see the doctor again? Who should I ask for, if I have a concern?
5. Make notes about what they promise to do for you - e.g., give you a records release form to sign before you leave, request the hospital discharge summary for their files, call in prescription refills to your pharmacy. Follow up, if they don't.
There is only a brief time to exchange information. What would they like to know about her? What do I need from them? The stakes seem high - Is blood pressure trending toward a risky level? Is more walking good or will it further injure the stress fracture? I need to understand what is happening.
How can these appointments become more relaxed and generate more satisfying results? Here are a few suggestions:
1. Make a list of specific questions in advance - e.g., "Can you give me a list of danger signs for someone with this heart condition." "How does her heart medication impact her blood pressure?" "What can we do to treat her swollen ankles?"
2. Ask up front how much time is available for the appointment.
3. Speak up! Clarify your goals at the beginning - e.g., "I am here because I want to work with you to provide Mama excellent medical care. I want to understand her condition, follow your instructions, and rely on you for advice."
4. Ask for an overview of how their practice works - e.g., "Help me understand how your practice is organized. We have met with the doctor once, now we're meeting with the nurse practitioner. Can we expect to see the doctor again? Who should I ask for, if I have a concern?
5. Make notes about what they promise to do for you - e.g., give you a records release form to sign before you leave, request the hospital discharge summary for their files, call in prescription refills to your pharmacy. Follow up, if they don't.
Thursday, March 14, 2013
Moving an Immobile Person Up and Down Stairs
I took Mama home from the hospital with the discharge doctor's instruction echoing in my head, "Get her to a cardiologist for follow-up in a week." How was I going to do that? She couldn't walk, had little strength, and would be on the second floor of our home during recuperation.
A physician transport service brought her into our house and up the stairs when she arrived from the hospital. I contacted them later to arrange transportation for the cardiologist's appointment. They quoted a charge of $500 each way. This seemed highly unreasonable for one doctor's visit and impossible as a longer-term solution, considering the multiple checkups to come.
The way out of this dilemma appeared after a brief web search. I found the Dealmed EMS Stair Chair on Ebay. Check it out here.
"The Dealmed Aluminum EMS Stair Chair is designed to help EMTs transport patients through tight spaces and up or down stairs, safely and efficiently. The sturdy aluminum frame is strong enough to hold up to 400 pounds, yet surprisingly lightweight. Three adjustable straps with quick-release buckles ensure the patient’s comfort and safety. Non-slip grips on the rear and front handles help rescuers maneuver the Aluminum EMS Stair Chair easily. Compact folding allows you to stow the stair chair in the ambulance without taking up a lot of space."
The chair performs just as advertized. Mama weighs just over 110 pounds. Two able-bodied, middle-aged people have easily and safely moved her up and down fourteen steps multiple times. At $220, the Stair Chair has been a bargain and a blessing.
A physician transport service brought her into our house and up the stairs when she arrived from the hospital. I contacted them later to arrange transportation for the cardiologist's appointment. They quoted a charge of $500 each way. This seemed highly unreasonable for one doctor's visit and impossible as a longer-term solution, considering the multiple checkups to come.
The way out of this dilemma appeared after a brief web search. I found the Dealmed EMS Stair Chair on Ebay. Check it out here.
"The Dealmed Aluminum EMS Stair Chair is designed to help EMTs transport patients through tight spaces and up or down stairs, safely and efficiently. The sturdy aluminum frame is strong enough to hold up to 400 pounds, yet surprisingly lightweight. Three adjustable straps with quick-release buckles ensure the patient’s comfort and safety. Non-slip grips on the rear and front handles help rescuers maneuver the Aluminum EMS Stair Chair easily. Compact folding allows you to stow the stair chair in the ambulance without taking up a lot of space."
The chair performs just as advertized. Mama weighs just over 110 pounds. Two able-bodied, middle-aged people have easily and safely moved her up and down fourteen steps multiple times. At $220, the Stair Chair has been a bargain and a blessing.
Wednesday, March 13, 2013
Families Need a Guide to How Hospitals Work
Mama is home from the hospital. I am very grateful for talented doctors, nurse practitioners, medical technicians and nurses aides. They excel at diagnosis and treatment. They need more work on communication with family members.
Families need a consumer's guide - a simple information sheet that describes how the hospital will care for their patient. This should be distributed at registration and should begin something like this:
"Welcome to Wellcare Hospital. Your patient will be in the Intensive Care Unit, in Room 16. When his condition improves, he will be moved to the general ward. The doctor with overall responsibility for your patient in Intensive Care is Dr. Smith. You can reach Dr. Smith at this phone number 555-555-5555 between the hours of 3:00pm and 5:00pm. Other doctors on the ICU team are Drs. Rosenburg, Estes, and Jones. These doctors will visit your patient daily to monitor his condition. Dr. Smith will examine your patient during morning rounds and will give you an updated report at that time or, later, by phone.
"Teams of nurses, working on three eight-hour shifts, will also care for your patient. Nurses manage medications, bathing, feeding, and overall comfort. Go to the nurses station to find out which nurses are assigned to your patient during each shift. Do not hesitate to address questions to nurses or to report changes you have observed in the patient's condition."
Our family had not spent much time in hospitals and did not know what to expect. It was a struggle to find out basic information like "When can we talk to the doctor? How will you know that she is well enough to go home?" We would have been more relaxed and confident if we had known, from the beginning, how hospital care is organized.
Families need a consumer's guide - a simple information sheet that describes how the hospital will care for their patient. This should be distributed at registration and should begin something like this:
"Welcome to Wellcare Hospital. Your patient will be in the Intensive Care Unit, in Room 16. When his condition improves, he will be moved to the general ward. The doctor with overall responsibility for your patient in Intensive Care is Dr. Smith. You can reach Dr. Smith at this phone number 555-555-5555 between the hours of 3:00pm and 5:00pm. Other doctors on the ICU team are Drs. Rosenburg, Estes, and Jones. These doctors will visit your patient daily to monitor his condition. Dr. Smith will examine your patient during morning rounds and will give you an updated report at that time or, later, by phone.
"Teams of nurses, working on three eight-hour shifts, will also care for your patient. Nurses manage medications, bathing, feeding, and overall comfort. Go to the nurses station to find out which nurses are assigned to your patient during each shift. Do not hesitate to address questions to nurses or to report changes you have observed in the patient's condition."
Our family had not spent much time in hospitals and did not know what to expect. It was a struggle to find out basic information like "When can we talk to the doctor? How will you know that she is well enough to go home?" We would have been more relaxed and confident if we had known, from the beginning, how hospital care is organized.
Monday, March 11, 2013
Ever-changing Home Care for Alzheimer's Patients
Mama's diagnosis of Alzheimer's was shocking. The earth moved, and I was immediately in a different reality - responsible for someone who didn't know what state she was in, what year it was, or that her husband had died.
My First Plan . . .
I couldn't let her go home. My husband and I agreed she would live with us. I hired part-time caregivers and involved Mama in most aspects of our lives. This lasted for three years. Then, the plan fell apart. Mama resisted help with dressing and bathing. She resented being asked to take any medications. Her judgment declined. We were scared that she might stay up all night, tumble down the stairs, eat an entire box of chocolate candy, or lock herself in the car while we were pumping gas. Her need for more oversight and prompting turned our home into a whirlwind of drama.
The Next Plan . . .
I rented a small apartment for her nearby. It had an elevator that eased the concern about stairs. I hired a full-time, live-in caregiver, installed a door alarm on the front door, and visited every afternoon. Our emotional tangles about the medications, when to go to bed, what to wear, etc. disappeared. We listened to music, went for walks, and enjoyed each other's company. This lasted about a year and a-half. Then, she became seriously ill with the flu.
And the Next . . .
Mama was hospitalized for ten days. Her losses were major. Standing, walking, and swallowing were impaired. Blood pressure and heartbeat were erratic. She developed a painful stress fracture. She and her caregiver returned to our home, where we puree food, monitor edema, and exercise each day. There is a lot of lifting, turning, and bathing in bed. She has been here for two months. She is improving. There will be another plan.
My First Plan . . .
I couldn't let her go home. My husband and I agreed she would live with us. I hired part-time caregivers and involved Mama in most aspects of our lives. This lasted for three years. Then, the plan fell apart. Mama resisted help with dressing and bathing. She resented being asked to take any medications. Her judgment declined. We were scared that she might stay up all night, tumble down the stairs, eat an entire box of chocolate candy, or lock herself in the car while we were pumping gas. Her need for more oversight and prompting turned our home into a whirlwind of drama.
The Next Plan . . .
I rented a small apartment for her nearby. It had an elevator that eased the concern about stairs. I hired a full-time, live-in caregiver, installed a door alarm on the front door, and visited every afternoon. Our emotional tangles about the medications, when to go to bed, what to wear, etc. disappeared. We listened to music, went for walks, and enjoyed each other's company. This lasted about a year and a-half. Then, she became seriously ill with the flu.
And the Next . . .
Mama was hospitalized for ten days. Her losses were major. Standing, walking, and swallowing were impaired. Blood pressure and heartbeat were erratic. She developed a painful stress fracture. She and her caregiver returned to our home, where we puree food, monitor edema, and exercise each day. There is a lot of lifting, turning, and bathing in bed. She has been here for two months. She is improving. There will be another plan.
Saturday, March 9, 2013
Soft Landing At Elder Parent's End of Life
What does it mean to have a "soft landing" at the end of life? I think of it as freedom from avoidable injuries, illnesses, emotional upheavals, and anxiety. What contributes to calm and contentment in someone's last years? Here are several factors that help to smooth the journey:
1. Caregivers Who Care - It is painfully obvious when a caregiver is not working from the heart. Basic safety, sanitation, nourishment and physical needs may be met, but little energy is spent on truly engaging the individual. To maximize quality of life - at any age - is a worthwhile goal. People whose social outreach is declining, benefit from caregivers who bring a positive outlook and genuine concern.
2. Someone who links to the past - When short-term memory disappears, the middle and distant past can still be vivid for someone with dementia. It is my mother's childhood, young womanhood and early marriage that she and I talk about. Our time together would otherwise be much more silent and awkward. Family members who visit regularly, scrapbooks, and music link her to reality and a sense of normalcy.
3. Respect - Being treated as an individual, not as a stereotype, is critical to one's well-being at any age. Too often, a person who has lived a long life is dismissed and devalued by those who encounter them. I have heard the refrain "Well, she has already lived a long life" as a frequent excuse for not giving the best treatment or best care. Show respect by keeping up a person's physical appearance; maintaining a fresh, clean living space; and taking outings as appropriate. The humanity of a person doesn't disappear just because of age.
1. Caregivers Who Care - It is painfully obvious when a caregiver is not working from the heart. Basic safety, sanitation, nourishment and physical needs may be met, but little energy is spent on truly engaging the individual. To maximize quality of life - at any age - is a worthwhile goal. People whose social outreach is declining, benefit from caregivers who bring a positive outlook and genuine concern.
2. Someone who links to the past - When short-term memory disappears, the middle and distant past can still be vivid for someone with dementia. It is my mother's childhood, young womanhood and early marriage that she and I talk about. Our time together would otherwise be much more silent and awkward. Family members who visit regularly, scrapbooks, and music link her to reality and a sense of normalcy.
3. Respect - Being treated as an individual, not as a stereotype, is critical to one's well-being at any age. Too often, a person who has lived a long life is dismissed and devalued by those who encounter them. I have heard the refrain "Well, she has already lived a long life" as a frequent excuse for not giving the best treatment or best care. Show respect by keeping up a person's physical appearance; maintaining a fresh, clean living space; and taking outings as appropriate. The humanity of a person doesn't disappear just because of age.
Saturday, March 2, 2013
Recognize When Parents Need Help
It took a long time for me to accept that my mother needed help. Deep down, I was waiting for her to tell me. It was frightening to realize that she never would. With very small steps, I began a journey that became taking care of Mama.
About twelve years ago, when she was in her early eighties, I noticed that her grasp on minor details like clearing out old magazines and newspapers began to loosen. I didn't take it seriously enough. "Just busy", I thought. Later, paying bills on time went by the wayside. I noticed that, too, thinking "momentary lapse". I would hear her on the phone cheerily making friends with a nice lady from the bank, explaining how busy she had been, and promising again to mail the check right away. Finally, the whole process of food preparation got the best of her - shopping, cooking, cleaning up, and eating good meals became too much to manage. Still, I continued to see her as the capable, independent person she had been.
When awareness settled in, my energy went entirely in the wrong direction. I pleaded with her to be more responsible, thinking it was just a matter of willpower - "You have to pay your bills on time! The bank will take away your credit card!" "Please eat more than crackers and cheese! You're not getting enough nutrition. Nine-thirty is too late to have dinner!" Reasoning and cajoling had no effect.
I was scared, peering into an unfamiliar landscape of medical care, supplies, insurance, financial management, and family responsibility.
About twelve years ago, when she was in her early eighties, I noticed that her grasp on minor details like clearing out old magazines and newspapers began to loosen. I didn't take it seriously enough. "Just busy", I thought. Later, paying bills on time went by the wayside. I noticed that, too, thinking "momentary lapse". I would hear her on the phone cheerily making friends with a nice lady from the bank, explaining how busy she had been, and promising again to mail the check right away. Finally, the whole process of food preparation got the best of her - shopping, cooking, cleaning up, and eating good meals became too much to manage. Still, I continued to see her as the capable, independent person she had been.
When awareness settled in, my energy went entirely in the wrong direction. I pleaded with her to be more responsible, thinking it was just a matter of willpower - "You have to pay your bills on time! The bank will take away your credit card!" "Please eat more than crackers and cheese! You're not getting enough nutrition. Nine-thirty is too late to have dinner!" Reasoning and cajoling had no effect.
I was scared, peering into an unfamiliar landscape of medical care, supplies, insurance, financial management, and family responsibility.
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