Elder Care - At Home or Not?

This is what experience has taught me - you may have to temper your expectations of assisted living and nursing facilities.  They may not measure up to an idealized image of one-on-one, personalized home care. That imagined standard is unrealistic in a large group setting.

If you are a son or daughter whose aging parent experiences a fall, serious illness, or diagnosis of dementia, you may find yourself, for the first time, scrambling to find caregiver help.  Your image of good care is likely to be based on impressions, as you help Dad choose a facility for rehab or long-term living.  Unless you've done a lot of research in advance, you will rely on what common sense tells you -  it looks good, the building is well-kept, the staff seems competent and attentive. You'll ask obvious questions, reach a level of comfort,  and, Dad will move in.

You may notice that a few things fall through the cracks.  This can be disconcerting and stressful.  Favorite clothes are misplaced;  the battery on his bed alarm fails;  Dad isn't prompted to drink enough liquids to stay well hydrated.  Don't overreact. Ask yourself - Is this a singular event, or a trend?  Is the overall care experience above average?  Are isolated lapses primarily inconvenient, or do they seriously threaten well being?

If the group care setting is your family's choice, set reasonable expectations and value it for what it can provide . Develop a strategy for making the most of your parent's new home.  Visit frequently and get to know the staff.  Enlist family members to check in routinely. Engage a private caregiver for a few hours a week, if your budget allows.  Establish free-flowing, two-way communication with the staff.  Inform them of what's special about Dad - his personal history, personality traits, and preferences.  Be alert to risks like dehydration, which is common as a person ages and the sensation of thirst wanes.  Watch out for confusion and loss of cognitive ability that can signal bladder infections.  Remember that you are the indispensable member of Dad's care team.

Alzheimer's - Not What You See On TV

Caring for my mother  has been incredibly difficult - there's no denying that.  Yet, her Alzheimer's has not been what you see on tv or in the movies.  Ten years after the diagnosis she's not a frantic, wild-eyed woman in her nightgown pacing the halls of a grim institution.  She's not a dazed wanderer shuffling down suburban streets in the dark of night,  and she doesn't have that blank stare that fails to recognize a single family member. I had expected that images like these foretold my mother's certain future.

The reality has been quite different - so far.  Mama recognizes all of her loved ones and some new friends.  She does not wander, and her anxiety level is low.  She is capable of "normal", simple conversation.  She laughs at "I Love Lucy" - mostly the slapstick parts, not the subtle jokes.  She is mindful of her appearance, always wanting to be "fixed up" before going out.  She sleeps well at night.  She is generally very polite, saying all of the "right" things when introduced to people and thanking them for their kindness. She seems content.

My experience with this disease is limited to extensive care giving for one person and the observation of relatives and friends.  I cannot draw global conclusions, nor give false hope, about why my mother hasn't exhibited some of the more troubling and publicized behaviors of Alzheimer's patients.  Maybe it's because she has never left familiar surroundings or been long separated from those who love and respect her the most.  It could be that talking about "old times" with family members who know the context has kept her more connected.  Or, maybe appealing home-cooked meals and long-term caregivers have made a difference.

 I don't want to paint too rosy a picture  - our family lives with Mama's unbending resistance to help with personal care, her daily arguments about taking pills, and her determination that she doesn't need assistance when walking. I do want to suggest that each Alzheimer's patient may have an individualized response to the disease that does not conform to stereotypes.   Perhaps family caregivers should let that response unfold over time and figure out, each step of the way, "What does it take now for this particular person to remain safe and calm."

First Signs of Alzheimer's Confusion

The 85 year old father of a friend showed up at her bedside at 3am one morning.  He was fully dressed, shaved, and had shined his shoes.  He said he was "ready" to go to a regular 10am coffee hour to meet his buddies.  "Could they leave now? he asked."  This behavior was extraordinary - nothing like it had ever happened before.

My friend had been visiting for several months to support her father after his wife had died.  She had had no inkling that anything about Dad had changed.  She couldn't absorb the meaning of it, at first.  How could her well-educated, intelligent, and competent father be so "mixed up" and not realize it himself?

Other signs of cognitive impairment appeared in the next few weeks - he couldn't remember having breakfast; he brushed his teeth two or three times within an hour; bill collectors called to dun him for overdue credit card payments; he was baffled by the complexity of the microwave that he had used for years.  A doctor diagnosed him as an Alzheimer's patient a short time later.

Situations like this challenge family members to make vast adjustments in a very short space of time.  They must simultaneously deal with loss, fear, and massive amounts of information about care giving.  There is no slowing down and no turning back.  The irony is that the Alzheimer's patient may be much less agitated than the caregiver.  (Certainly not in all cases) The patient has been changing and adjusting over time;  the family member has been shocked immediately into a different dimension.

Regular visits with an aging parent can help family members stay connected with the parent's baseline behavior and notice incremental changes. Some of the visits should be long - three or four nights - to get a truer picture of the person's functioning. Phone calls alone aren't good enough. Somehow, the social skills for talking on the phone endure long after elements of judgment and memory have deteriorated.

Your Continuing Responsibility For An Elder's Care

A friend's 90 year old mother recently fell in her apartment.  She suffered cuts and bruises.  She was moved to the rehab section of her continuing care community so that her healing could be closely supervised.  When my friend, who lives in another state, visited, she was surprised that her mother was getting services that she didn't need.

An occupational therapist was laboring to teach my friend's mother how to put on her shoes. This was baffling because she has debilitating arthritis in her hands and has been unable to manipulate shoes onto her feet for years.  An aide in her normal residence is assigned to help her with this specific activity each morning.

Another therapist had spent hours during the week teaching my friend's mother to get safely into and out of a bath tub.  No one had advised the therapist that the assisted living facility where the mother lived had no tubs anywhere on the premises.  The visiting daughter finally explained.   For some reason, the mother had not "spoken up".

These two episodes are painful reminders of the importance of family-caregiver communication.  They demonstrate that there is no substitute, in elder care settings,  for the continuing involvement of a loving family member.   That person can communicate important information about the patient when the older person cannot articulate it.  Professionals deliver better quality care when they know of an individual's preferences, personality traits, and medical history - and they want to know!

Don't think that you are relieving yourself of all responsibility, when your parent moves to an assisted living, group home, or nursing care facility.  Your "casual visitor" routine can have terrible consequences if changes in the older person's "normal" behavior go unnoticed.  The care of your loved one is a team effort, and you are a key member of the team. Professional caregivers are skilled and well-intended -  but they are not mind readers.

Useful Equipment for Elder Alzheimer's Patient

The list below is much longer than I would have imagined ten years ago.  When I became a caregiver, I had only the slightest awareness of each of these time-saving, safety-oriented products.  Now, they are invaluable to our everyday life.  I purchased or borrowed each item to meet a specific need at the time it arose.   The links connect to representative examples:

• Kind Reminder - my own invention;  recorder that plays a loved one's comforting message at the press of a large white button  (www.kindreminder.com);  helps keep someone calm and reassured
• Wheelchair - needed after a fall compressed two vertebrae; used now to traverse long distances (http://www.walgreens.com/store/c/drive-medical-lightweight-transport-wheelchair-with-swing-away-footrest-19-inch-silver-vein/ID=prod6041818-product)
• Walker - used briefly when rehabbing from ten-day hospitalization with pneumonia;  helped regain strength which enabled return to walking unassisted  (http://www.parentgiving.com/shop/heavy-duty-deluxe-2-button-folding-walker-1073/p/)
• Bed rail - needed to prevent walking without assistance day or night (http://www.parentgiving.com/shop/adjustable-width-full-bed-rails-chrome-1566/p/)
• Baby monitor - allows remote oversight, during naps and at night; 1000 foot range makes it possible to move around the house and yard, while listening in  (http://www.vtechphones.com/products/detail/1704)
• Baby gate - used to block off upstairs hallway, leading from bedroom to stairs;  installed at chest height during naps and at night;  more of a reminder than an impenetrable barrier (http://www.target.com/p/evenflo-position-lock-tall-wood-gate/-/A-13979830#prodSlot=medium_1_6)
• Hospital chair - needed after hospitalization for pneumonia, when transfer from bed to chair was difficult; chair seat is high, there is a footrest, and the chair reclines for napping (http://www.swmedsource.com/medical_recliners.htm).  I purchased a used one on Craigslist for under $200.
• Gait Belt - a simple belt made of 3" wide webbing;  invaluable fall prevention;  companion holds onto belt that is around patient's waist;  invaluable to steady someone who is prone to trip or stumble (http://www.ebay.com/bhp/transfer-gait-belts)
• Emergency Evacuation Chair - used to transport person up and down stairs, when there was a temporary health problem that prevented walking;  used by EMTs to bring disabled people down stairs in emergency situations;  this was our solution to the problem of having no bedroom on the first floor and resisting the cost of installing an elevator or stair glide  (http://www.ebay.com/bhp/evacuation-chair)
• Door alarm - needed to alert caregiver that person was wandering at night;  alarm sounds in caregiver's room (there is a choice of tone) when a door is opened;  very easy to install (http://www.parentgiving.com/shop/wireless-wander-alarm-1830/p/)
• Foam Wedge Pillow - this is placed under a conventional bed pillow to elevate someone who is having breathing difficulty;  it was needed after a bout with pneumonia (http://www.makemeheal.com/mmh/product.do?id=10574)
• Skirts with elastic waistbands - needed for easy dressing and un-dressing;  found  (http://www.blair.com/t/womens/dresses-skirts/skirts/pc/1361/c/1397/1399.uts)
• TV Listener - wireless earphones that allow someone to listen to a program while the tv's speakers are muted;  others can be in the same room without having to hear the program that's on  (http://www.activeforever.com/tv-listener-wireless-headphones)
• Bath Bench - used for safe transfer from outside to inside tub;  enables bathing with use of flexible shower hose (http://www.walmart.com/ip/Carex-Bath-Tub-Transfer-Bench-FGB15411/14668617)
• Flexible Shower Hose - substitute for conventional shower head;  hoses are six feet or longer with shower head attached;  enables easy bathing by a caregiver  (http://www.environmentalgreenproducts.com/store/hand-held-shower-hose-kit-pr-16330.html)
• Elevated Toilet Seat - toilet seat is mounted on a frame with four rubber-tipped legs;  sits above conventional toilet seat, adding height and "chair arms" to increase stability (http://www.allegromedical.com/bathroom-assists-c517/all-in-one-commode-shower-raised-bath-seat-p564540.html)
• Bed and Chair Alarms - these alarms sound when pressure is relieved on a pad placed on the bed or chair seat;  used for a short time, before we discovered bed rails and set up 24 hour caregiving (http://www.walgreens.com/store/c/drive-medical-pressure-sensitive-bed-alarm-11in-x-30in/ID=prod6041889-product) and (http://www.parentgiving.com/shop/alarm-sensor-chair-timed-1yr-mdt84-4349/p/)

The Reality of An Older Person's Fall

A fall creates more than broken bones and bruises. Its greatest curse for an older person can be immobility.  Lying or sitting for long periods of time, waiting for a hip, femur, tibia, knee or ankle to heal takes its own toll.  A procession of bedsores, muscle atrophy, bladder infections, and pneumonia can dramatically reduce quality and length of life.

I took the published warnings and dire predictions to heart.  "No falls" became my mantra - "Whatever you do, don't let her fall!"   Caregivers have seldom been more than an arm's length away when Mama has been on her feet. We developed strategies to reduce the chance that she would trip or stumble:

• Her shoes have straps that keep them from sliding off
• A wheelchair carries her on long distances, so she doesn't get tired and drag her feet
• A "gait belt" around her waist, gives us a safe way to hold on to her when she is walking  (See example:  http://www.ebay.com/itm/Quick-Release-Transfer-Gait-Belt-60-Cotton-Gaits-Medical-Caregiver-Belts-/111095037287)
• When we let go to open a door, pick up a package, etc.,  we "anchor" her by making sure she is holding on to a door frame or handle
• We remind her to lift her torso when walking, instead of bending downward and plunging forward
• Bed rails prevent her unattended walking at nap time or at night

This intense monitoring for five years has prevented many mishaps, but not all.  There is no doubt that her good life has been extended, and there's no overlooking two serious falls - both when she was just inches beyond the reach of our best caregivers.   Both required hospitalization.  The truth is hard to accept - every effort to avoid a fall is worth it, but there is no 100% protection.

Balancing Safety and Privacy

Two of my friends have written that their mothers fell in the past week - one in assisted living and one in an independent apartment in a continuing care community.  Both were in their nineties and alone in their "homes".  Their injuries were serious and resulted in hospital admissions.  The future is unclear for these dignified women who are strong in spirit.  Their falls possibly could have been avoided had there been a caregiver no more than a step or two away.  It is highly unlikely that my friends could have found that "close contact" care or that their mothers would have accepted it.

This brings to mind a frequent caregiver calculation - how much of an elder's safety to sacrifice for the sake of their privacy.  This question often arises in the context of personal care in bedrooms and bathrooms. These are refuge spaces, where people expect quiet and solitude. They can also be obstacle courses where sharp counter edges, uneven floor coverings, and hard materials are ready to inflict cuts, bruises, and fractures.  Company is not welcome in these private spaces.  A caregiver's attempted invasion, in the name of safety, generates the fiercest objection and endangers a fragile relationship.

Many times I wait outside the closed door, holding my breath, to allow the privacy that is so important to self esteem.  I endure one tense moment after another, knowing that a slip and fall beyond my reach could start a trail marked by hospital care, long rehab, and diminished physical ability.  I struggle with "what is enough help and what is too much intrusion".

Perspective-taking When Caring for an Elder Parent

There is much to remember, much physical work to be done, and intense attentiveness when caring for one's elder parent.  Even with the assistance of a paid caregiver, I often fall into bed at night tired and grateful just to close my eyes.

People frequently say, "You must be prepared, since you've had all of this time to think about it."  They mean that I must be prepared for the end of Mama's life.  They're expressing just what common sense would suggest.  The truth is that this kind of caregiving feels more like a neverending race than a slow, considered march to a final destination.  Sometimes, it's like aerobic exercise - I'm gasping for enough air to go on.  There's no time for preparing or processing what's happening with Mama, or with me.

A situation like this makes it very difficult for a caregiver to keep a realistic perspective.  Living so much "from moment to moment" is really counter to standing on a mountaintop, looking down and seeing the big picture.  My guess is that caregivers lose touch with an elder parent's trajectory toward ultimate decline and become overconfident about their own resilience and energy reserves.  They may be making unreasonable demands on themselves in a last attempt to retrieve the elder parent's ebbing physical and mental abilities.  I have seen caregivers enforce difficult exercise regimens for 90 year-olds, hoping to restore long-atrophied muscles.  Others overdo puzzles and mind games long after dementia patients will benefit from them.

Take time to look realistically at what is happening and do it away from the caregiving setting. Where are you and your parent in the long-term caregiving process?  What would an objective observer say about your parent's stage of life and your level of commitment?  Are you putting your efforts where they can truly make a difference, or are you working toward unrealistic goals?  Is acceptance becoming a reality for you?

Build A Bed Rail for An Elder Parent

Mama was very weak when she was discharged from the hospital.  She had no awareness that she couldn't walk at all.  It was a near certainty that she would fall if she tried to get out of bed by herself.  Bed rails seemed to be an answer to this hazardous situation.

I explored the possibilities and found hospital beds which have built-in safety rails and various styles of bed rails that can work with conventional beds.  These choices looked like they would work, but they were expensive - $160 plus for the rails and much more for new and used hospital beds.  This seemed like a major investment for a need that hadn't been clarified and might be temporary.

For the short term, I have constructed bed rails from materials found at a local home improvement store at a cost of about $60.  (See photo below) These rails are made from 1 inch PVC pipe and with cemented joints.  They are attached to posts of the bed frame by U-bolts, the rough ends of which are capped with plastic caps to protect Mama from scrapes and scratches.  They provide just enough of a barrier and reminder to prevent Mama's getting out of bed without assistance. Coupled with a good quality audio monitor, the rails create a system that gives me some warning  that she's awake and ready to get up.

The rails could also be constructed as a stand-alone,  four-sided structure that is entirely external to the bed.  They are not recommended for really strong, aggressive people who could possibly stress them beyond their breaking point.  More construction details can be provided upon request.

Do-it-Yourself Bedrails

Early Alzheimer's - A Solution for Repetitive Questions

The early Alzheimer's behavior that agitated me the most was Mama's repetitive questions. Every morning, she would ask the same ones over and over. If I came within earshot, I would hear, "Have I had my blood pressure medicine?" "Is somebody here with me today?" "Have I had breakfast?" I would answer every question, helping her get her bearings for the day. Immediately, the information was lost to her , and the questions would start again. I would respond until irritation and impatience overcame me. Mama couldn't retain the answers, no matter how many times they were repeated. After months of this frustrating routine, I sadly began to ignore the questions, post written notes all over her room, and reduce our contact.

One morning, I awoke with an inspiration - "I'll find a simple recorder that Mama can operate, and I will record the information that she seeks every day. She can play the messages as often as she likes." I tried an old recorder I had used at work. It was too complicated. Mama would mistakenly erase recordings or turn off the volume. I looked in toy stores and searched the web. There were no recorders that were simple enough for my purpose.

This is how I became a part-time inventor, working with generous designers and manufacturers who helped me produce The Kind Reminder™. It is a simplified recorder worn as a pendant. Just press the one big, visible button to hear a comforting message in a familiar voice. Learn about The Kind Reminder™ here, and see the You Tube video.

Anxiety about her safety and whereabouts seemed to be at the root of Mama's repetitive questions. She had a recurring impulse "to get things straight", as she put it. The Kind Reminder™ provided reassuring information on demand and created a buffer between our emotional selves. When she would start with the questions, I could choose to refer her to my recording. She seemed to take pride in getting the answers by herself. Sometimes the message that calmed her was as simple as "I love you Mom".

Family Benefits From Mama's Long Life

I have been realizing lately how fortunate my children, my brother, and I are to know Mama in her nineties. We can look at her life in its fullness, with nearly all of the story written. We can see the way she approached challenges and changes as each new stage unfolded and compare our own outlooks. We can admire her good health habits, her commitment to look her best, her calm in the face of trying times.

As each of us experiences more of life, we gain a clearer picture of who Mama is. Her enduring enthusiasm and humor are distinctive, uncommon, characteristics. Her essence remains, though short term memory and judgment decline. She still has the impulse to help, to be patient, to not burden or inconvenience. She is still motivated to brush her hair and put on lipstick and jewelry, before going out to greet the world. I watch her and wonder, "How much is she like her mother, her grandmother, and their ancestors? Is it even possible that she could be very different from those women who have passed along temperament and manner for centuries? Which of these family traits have become my own?"

Her recollections surface spontaneously from as far back as childhood in the 1920s. Her adult grandchildren travel back in time to see her cooking doughnuts,in a pot of hot oil, with only her little sister as a helper. They see her at the prom in an organza dress that wilted in the heat of a crowded ballroom. They listen to her energetic piano playing - the "Battle Hymn of the Republic" signaling her best friend to come over and play. These stories are magical, vivid replays of moments that reveal Mama's essence. Our family values them like fine jewels. We see ourselves reflected in these stories and know the meaning of an unbroken family circle.

Caregiver Challenge - Switching Gears

Managing a parent's care at home deeply involves one's consciousness. The commitment can crowd out other aspects of life. I assumed I could do whatever was necessary to take care of Mama. It was a long time before I realized the scope of the job and the risk to my own well-being.

A multitude of tasks is not the only demand on a caregiver. An ever-present sense of responsibility is another. It becomes an undercurrent of daily life, rippling through other relationships and activities. Concerns about Mama are never far away - "Did I tell the nursing assistant that moving her right arm is painful? Did I leave enough supplies? Will Mama stay safely in the chair when someone is preparing breakfast?"

Caring for another in any form means sacrifice. One enduring question is "How much sacrifice?". Initially, I thought taking care of Mama would be temporary. She is in her nineties. She had been hospitalized. A welcome surprise has been her return to good physical health. I realize now that my role is for the "long-term", and that my life will be re-structured.

A daily challenge is how to switch gears between care giving and other life pursuits. I often sit at my desk, feeling the adrenalin draining away after an intense care giving episode. I need to decompress before I can get back to work. When I'm attending a meeting, a phone call from home can rip me from the moment and plant me instantly in the care giving universe. These disruptive transitions can't be eliminated, but there are ways to improve them:

1. Give more thorough guidance to substitute caregivers and rely on them.
2. Set up an emergency person (spouse, adult child, etc.) for specific short periods and turn off the phone.
3. Rejuvenate regularly through friends, entertainment, and physical activity. It won't happen unless I plan it.
4. Accept myself as the "good enough" caregiver, not the perfect one.

Separate the Person from the Illness

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.

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."

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.

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.

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.

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.

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.

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.