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/)