Wednesday, March 25, 2015

An Alzheimer's Spouse ... Married, yet Widowed

I first noticed signs of concern during a wonderful post-retirement trip to Europe in the fall of 2006.  My wife, Clare, was exhibiting behaviors I had never seen before and I was worried.  Clare was misplacing and losing objects in restaurants and hotels.  She was forgetting basic information, such as how many children and grandchildren we have.  She was describing trips to countries we had never visited.  And despite always having an excellent sense of direction, Clare was now getting us lost on a daily basis.  When we returned home, I went online to several reputable websites and discovered that all of these behaviors were early warning signs of mild cognitive impairment and/or Alzheimer’s disease (AD).  Although Clare denied having any problems, I convinced her to see a neurologist.  She saw no need to do so, but agreed to do so to “ease my mind.” 

I shared my observations with the doctor on our first visit and he asked Clare many questions.  He then had an assistant give her a quick cognitive screening test and Clare received a near perfect score.  The doctor told us not to worry ... that everything I had observed was probably due to the stress of our very active early retirement and all of our travel, and he suggested some ways for Clare to lessen her stress.  

One year later I was now observing even more behaviors that worried me.  I raised my concerns with our internist at our annual physical exams.  He administered a cognitive screening test and Clare again received a near perfect score.  His diagnosis was mild depression and he placed Clare on anti-depressant medication.  Clare took this medication only briefly, however, due to side effects.  However, I remained fairly certain that Clare was suffering from mild cognitive impairment if not already in the early stages of AD, despite what our doctor had said.

In the early fall of 2008, we returned to the neurologist.  By this time I was keeping weekly logs of Clare’s worsening symptoms and new troublesome behaviors, and I shared these logs with the doctor.  I noted how Clare kept asking me the same question over and over without any recollection of having just asked me that same question minutes earlier.  I indicated that Clare’s aphasia was getting worse, and how she also was experiencing frequent agnosia, often unable to ”see” objects that were literally right in front of her.  I told the doctor that Clare was forgetting how to do things she used to do routinely on the computer, and had lost interest in hobbies she had previously enjoyed.  She was also getting lost while driving in our community.

The neurologist ordered more comprehensive testing this time ... more cognitive testing, complete blood work, and a brain scan.  When we met with him to review all the test results, he indicated that whereas he saw no evidence of early stages of Alzheimer’s, he did see a negative change in her cognitive testing.  However, he still strongly felt that Clare was basically fine and he could see no definitive signs of AD.  He said that Clare’s memory issues and some aphasia that surfaced on the tests were probably due to anxiety and he placed Clare on anti-anxiety medication. 

By winter, Clare’s symptoms were worsening, despite the latest medication.  I asked Clare to let me find another neurologist for a second opinion, but she adamantly refused.  I tried to convince Clare that, according to any reputable website I had consulted, her symptoms were not due to stress, anxiety, or depression.  Clare, however, insisted that there was nothing really wrong with her and that the current neurologist had said words to that effect.  So, we returned to that same neurologist’s and this time Clare’s results on cognitive testing were extremely poor.  The surprised neurologist now issued a diagnosis of severe cognitive impairment due to depression, and arranged for Clare to meet weekly with a cognitive psychologist.  He also strongly suggested a series of individual cognitive fitness training sessions offered by an assistant for an additional fee in his office that could begin in about 3 months, and said that all of this, along with some new medication, should result in Clare’s symptoms improving a great deal within 6 months. 

After 3 months of weekly visits with the cognitive psychologist, and one week before Clare’s cognitive training sessions were scheduled to begin, Clare’s symptoms continued to worsen further.  I confronted the psychologist in Clare’s presence and asked if he were in my position with his wife, wouldn’t he take his wife to another doctor for a second opinion?  Thankfully, he indicated that he would, and I turned to Clare and asked, “So now can we get a second opinion?”

Clare reluctantly agreed and I told her that I had researched three new doctors, two neurologists and one geriatric psychiatrist.  In the spring of 2009 we met with a geriatric psychiatrist associated with a hospital-affiliated Alzheimer’s Disease Research Center.  Before that first testing session was even completed, the doctor told me that whereas it was too soon to tell if Clare had AD, her problems were definitely not due to stress, anxiety, or depression and he wanted her off all of that medication.  After much more testing over the course of the next few months, Clare was diagnosed with early/young onset AD.  She had just turned 63.

In 2011, as Clare’s AD continued to worsen, I started her in a social model day care program one day each week.  By 2013, Clare was attending day care programs four times per week.  It was becoming increasingly clear to me that I would soon no longer be able to properly care for Clare by myself at home.  Prior to retirement we had discussed our preferences should either of us ever need long term care, and we both decided we’d prefer placement in a facility rather than hiring 24/7 aides for our home.  In September, 2013, Clare was admitted into an Assisted Living Residence (ALR) dementia wing.  My role then changed from being Clare’s 24/7 caregiver to her daily part-time caregiver and her full-time advocate.

Clare has become more and more confused, frail, and dependent upon others since placement.  Except for music, her short and long term memory have basically vanished.  On most days she is unable to recognize our children and grandchildren, but Clare still knows me, recognizes me as her husband, and misses me when I am not there.  However, on one recent occasion she has kissed a male ALR resident on the lips and given him a good night hug thinking he was me.

Clare and I were very fortunate to experience a “fairy tale” marriage.  We met right after our sophomore year of college, became engaged during our junior year, and married a week after graduation.  We had been best friends before our marriage and have been best friends and deeply in love ever since.  However, due to Clare’s worsening AD, we obviously no longer have the same relationship we once had.  In many respects, our relationship now is more akin to parent/child rather than husband/wife.  I visit with Clare each day but we can no longer talk about anything for more than a few seconds before she gets very confused.  I miss not having conversations with Clare.  We can no longer play games, travel, or engage in sports together.  We can no longer share virtually any of the activities we used to engage in together.  I miss all of that, too.  But each day we find time to hug, cuddle, and kiss ... often on the couch while watching TV in one of the ALR’s many lounges ... and still see musicals in neighborhood theatres and take walks at a nearby beach when the weather cooperates.

I still love Clare deeply and she still loves me just as much.  That will never change.  But aside from no longer being able to share and discuss matters or participate in most activities together anymore, we have not had a fulfilling sexual relationship in many years.  And, as Clare fades faster and faster, I know that it won’t be long before Clare no longer recognizes me or knows who I am with certainty.  In many respects, it is as if I am now already widowed.

I have reached the stage where so many Alzheimer’s spouses find themselves ... married, yet widowed at the same time.  My best friend for nearly 50 years, my lifelong partner, my lover, my wife, my children’s mother ... all of these roles have already faded or are fading rapidly.  I am learning to do more things by myself, alone in a house we had lived in together for forty years.  Going to sleep in an empty bed was incredibly difficult that first night after Clare was placed.  It’s now well more than a year after Clare’s placement and coming home to an empty house and an empty bed is still difficult.  Doing everything by myself that we once did together is also very difficult at times.  I still find myself crying at my loss ... at our loss ... of the once bright future we had as young retirees that came to such an abrupt and premature end due to Alzheimer’s.

I miss all of the social, emotional, and physical parts of our once close relationship.  A lot.  But while Clare is still able to tell me she loves me, even if unable to function as my wife, how can I “be with” another woman without feeling tremendously guilty?  I’m human and still in my 60s ... I have physical desires.  Ironically, I can still have sex with Clare.  Although she has had absolutely no interest in having sex for several years ... and, in fact, will giggle like a child if I hold her in a “private place” ... she will still do anything for me much like a child wants to please a parent.  Yet were I to take advantage of her willingness to please me, I would feel like I’m taking advantage of her, not enjoying mutual sex. 

I still love Clare so much, and she still loves me so much, so how can I “date” another woman for companionship, let alone go to bed with and have a physical relationship with another woman, while Clare is still alive? 

I am an Alzheimer’s spouse.  I am married to the love of my life, but except for a few hours each day I am living completely apart from my wife knowing that her AD will worsen more and more until certain death.  I now live most of my life as a single man.  In a very real sense, I am already widowed.  I am an Alzheimer’s spouse ... married, yet widowed, at the same time.

Published in AFA Care Quarterly, Spring, 2015, pp. 13-14.  Access at:

Friday, March 6, 2015

Caring for Alzheimer's Patients in the ED

(Author's note:  The editor changed all ER references to ED, referring to Emergency Department instead of Emergency Room, in the actual published version.)

What ER staff should know about people with Alzheimer’s
My wife has Alzheimer’s disease (AD) and lives in the dementia unit of an assisted living residential facility.  She has been admitted to a hospital Emergency Room (ER) several times within the past year.  For a person with AD, the ambulance ride itself can be very unsettling.  But then being transferred to a hospital gurney, changed into a hospital gown, lying beneath bright lights and hearing the sounds of nearby people screaming and the sounds of machines beeping, being poked and prodded by many different and unfamiliar doctors and nurses ... all of this can be very scary to a person with Alzheimer’s.  In addition to these disorienting and frightening experiences, painful needles for requisite blood work or injections, and being wheeled into other rooms for various testing procedures, often cause additional confusion for the Alzheimer’s patient.

All of this sensory overload, overstimulation, and confusion may easily exacerbate whatever condition initially led to ER admittance.  Already very confused and emotionally fragile, often so cognitively impaired that nothing that is happening and nothing that is being said by a doctor, nurse or technician makes any sense, a person with AD must be treated with extra care by ER personnel.

ER staff must modify their techniques to gain helpful information
ER personnel often ask patients to tell them their name and date of birth, and to describe the intensity of their pain on a 1-10 scale, or to describe the pain as sharp, moderate, or dull.  But asking such questions to someone with AD will usually be futile and lead to greater anxiety and even more confusion.  Asking AD patients to place a hand on the part of the body that is hurting, for example, is more effective than asking the patient where it hurts.  After learning where the pain is located, the doctor may then apply pressure around that identified area while asking the AD patient if it hurts more or less, here or there.  Simply observing the patient’s face when applying pressure to a painful area will often let a doctor know just where the pain is most intense.

Don’t forget the caregiver ... and be aware of sundowning
If the AD patient’s primary caregiver is present, ER personnel should immediately ask that caregiver for information.  Aside from giving the patient’s complete name and date of birth, the caregiver may be able shed more light on the reason for ER admittance, provide valuable patient health history along with a list of all of the patient’s medications, and note whether or not the patient has had food or daily medication by the time of admittance.  This latter information can be crucial because if AD patients have not yet taken their daily medication or have not eaten in a long time, more confusion may develop that can complicate a diagnosis. 

ER personnel also need to learn that many AD patients will “sundown” as the day wears on, growing even more confused about where they are and why.  The longer it takes ER personnel to administer and analyze tests for someone with Alzheimer’s, the greater the chance for sundowning.  During my wife’s ER visits, she was not allowed to eat, drink, or take her daily medication until all testing was completed and results were interpreted.  However, this often took many hours and the lengthy “wait time” led to my wife becoming more fatigued, confused, anxious, and disoriented.  She refused to use a bed pan and I had to restrain her from leaving her gurney to go to the bathroom.  She also kept trying to remove the needles and IV hook-up from her arm.  But each time I told ER personnel that my wife was sundowning and they needed to complete and analyze testing quickly so she could at least take her medications and eat, I was told that I needed to continue to wait patiently.  I was able to wait patiently ... but my wife was not!

Preparing for the future
With more than 5 million people in this country already dealing with AD, and with that number expected to increase to 15 million by 2050, ER personnel will be treating increasing numbers of fragile elderly patients who are confused and unable to communicate effectively.  ER personnel must become more aware of the characteristics of people with AD to be able to diagnose and treat the causes for their ER visits more quickly and effectively. 

When ER personnel diagnose an Alzheimer’s patient, chances of making a proper diagnosis will increase if ER staff modify their patient questioning techniques and seek assistance of caregivers if they are present.  And if additional testing is ordered, ER staff must make a greater effort to minimize the wait time for such testing and test analysis.

Published on website of  Emergency Medicine News on March 5, 2015 in advance of publication in Emergency Medical enews on 3/25/15.  Access online only at:

Friday, January 16, 2015

A Caregiver's Perspective on ALR Care for People with Dementia

Some brief background
I first observed some of the early warning signs of Alzheimer’s in my wife, Clare, when she was 60 years old.  However, Clare wasn’t formally diagnosed with early or young onset Alzheimer’s until she turned 63 in the spring of 2009.  That summer, we both joined weekly support groups facilitated by social workers at the Long Island Alzheimer’s Foundation (LIAF).  Clare met with others who were in early to moderate stages of Alzheimer’s in one room, while I met with their spouses in another room.  

A dozen people attended our weekly LIAF support group meetings when I joined, but within a year or two we had as many as 16 spouses attending every week.  Of that group, only two continue to attend.  Whereas I no longer go to those weekly support group meetings, many of our original members have remained close.  In fact, quite a few of us continue to meet for lunch once a week at a restaurant that is only blocks away from where our support groups met a few years ago.  We are all there for each other and continue, in many ways, to function as a support group.

As we begin the year 2015, 11 of our original 16 members have lost our spouses.  Of the five remaining members whose spouses are still alive, one spouse receives home health care, 3 are in lockdown dementia units of Assisted Living Residences, and one is in a V.A. nursing home.  Since Alzheimer’s is a terminal disease with no means of effective treatment or cure, all Alzheimer’s spouses understand that it is only a matter of time before widowhood.

Caregiver concerns about ALRs
I am one of the spouses whose loved one lives in an ALR.  Clare is in a safe and secure environment, is happy most of the time, and receives good care.  Needless to say, our lunch group’s weekly discussions often involve “updates” on our spouses ... as well as updates on how those already widowed are getting on with their lives. 
Generally, one hears mostly good things about the care our loved ones received prior to their deaths, or are currently receiving in their residential placements. 

However, we also hear of some concerns about ALRs and the reasons for all of our complaints can easily be summarized as follows: There is a lack of sufficient training for those who work with Alzheimer’s residents, and there is insufficient oversight and supervision of these aides.

The vast majority of aides in residential placement facilities are very caring individuals with lots of patience.  The vast majority do their jobs properly day in and day out.  I am very pleased almost all of the time with the care Clare receives each day from her various aides.  But there have been occasions when aides have failed to help Clare with her Activities of Daily Living (ADLs), even though those expectations for aides are written in Clare’s Individual Service Plan (ISP).  For example, there have been days when Clare was not helped with shampooing her hair when showering, not reminded to and how to brush her teeth, not helped with application of body lotion, and not helped with getting dressed leading to Clare’s wearing the same outfit several days in a row. 

Clare’s bedroom closet is kept locked and only the aides have access.  Yet, too many times I have found Clare’s recently laundered clothing lying in a pile on the closet floor and mixed in with dirty clothing.  Too many times someone else’s blouses and pants have somehow made it into Clare’s closet and Clare has been dressed in other residents’ clothing.  (All of Clare’s clothing has her name clearly marked on a label.)  And I have found Clare dressed totally inappropriately for that day’s weather on too many occasions when I have come to visit.

In the scheme of things, I suppose one could say that all of these incidents I have described are relatively minor.  And I would agree.  There have been very few major untoward incidents, such as mix-ups with medication.  But minor incidents, or “glitches,” have continued to re-occur again and again.

ALR training and management needs
Based upon my visits with Clare in her ALR dementia unit, and after numerous meetings with various ALR directors, and after many discussions with fellow spouse caregivers who are or have been in similar situations, I feel that there are two reasons for repetitive minor glitches in an otherwise A+ facility:  Lack of sufficient ongoing staff training, and absence of supervision and ongoing staff evaluation during morning and evening hours. 

Management at Clare’s ALR sets very high expectations for dementia unit aides, and that is as it should be.  However, if management is absent, how can aides be held responsible if they do not meet these high expectations?  If ALRs do not have managers onsite in the early morning hours or in the late evenings when aides are supposed to be working closely with residents on their ADLs, how can ALR management be sure that their high expectations and standards for care are being met?  The short answer to this question is, they cannot!

Management must invest the time and money to provide supervision of aides not just during normal daytime and afternoon hours, but also during the times when aides are assisting dementia residents with their ADLs in the mornings and evenings.  Aides need to be observed and evaluated on a daily basis.  Training must be provided to aides on an ongoing basis both to review management’s standards and expectations, and to review particular issues with each individual dementia resident.  After retraining, if any aide is still not meeting high standards and expectations, that aide should be terminated.

Each time management has provided retraining to aides in Clare’s ALR, there has been a noticeable improvement in quality for a period of time.  However, whereas staff retraining focuses on general standards and expectations, staff responsible for assisting residents with ADLs must also be reminded on a regular basis of each individual resident’s particular needs.  Each resident has an ISP and I have been told that a copy of each resident’s ISP is in the office and “accessible” to all staff.  But it is unrealistic to expect aides to periodically review resident ISPs in the office during the day. 

With the possible exception of a few extremely conscientious aides, in my experience reviewing each resident’s ISP just does not happen.  I know this for a fact since there have been so many instances of my asking aides why this or that has not been done for Clare and they have told me they were unaware of this or that having to be done, or that no one ever told them to do that ... despite this or that clearly noted in Clare’s ISP “accessible” in their office.

One possible suggestion for better meeting each resident’s personal needs
In addition to maintaining a file of ISPs in the office, it would seem helpful if there would be a posting in each resident’s room of a copy of relevant pages from that resident’s ISP about assistance needed while in that room ... information about dressing, showering, hygiene, etc.  Such a posting would enable aides to quickly refresh their knowledge of each resident’s needs on a regular basis.  Aides could scan information in check-off columns on an ISP in seconds and be up to speed on the degree of assistance residents need in their rooms.  Or, perhaps, a posted index card in each resident’s bedroom could list just 2 or 3 important reminders about that resident’s ADL needs re hygiene or dressing. 

A simple file box in the dining room with one file card on each resident would also inform aides about particular dining needs of each resident.  Such cards would allow new aides or aides who don’t usually work closely with some residents to become more familiar with each resident’s specific needs.  For example, Clare is supposed to be given a grilled cheese sandwich if she won’t eat her regular meal.  But on several instances when new aides were working in the dining room, Clare had not eaten dinner when I arrived and no aide knew that the protocol was to give her a grilled cheese sandwich.  Was that information written on Clare’s ISP?  Yes.  Had any of those aides read her ISP?  No.  A file box in the dining room with just a note or two about residents might be very helpful, especially for new aides or aides filling on an emergency basis. 

More ongoing training and management oversight is needed
Absent of ongoing training and supervision, and absent of the presence of full-time management, most ALR aides will continue to do an excellent job most of the time.  But “most” of the time should not be the acceptable standard.  The only acceptable standard should be that all aides do an excellent job all of the time.  Pertinent information on each resident should be readily accessible to all aides in the areas where that information will do the most good ... in each resident’s bedroom/bathroom, and in the dining room.

But in order for excellence to be the norm, staff training and retraining must be planned and provided on an ongoing basis throughout the year.  Aides need to be periodically reminded of standard and expectations.  Aides need to be periodically reminded of personal issues with individual residents.  And aides must be observed and supervised when implementing ISPs during morning and evening hours.  All too often there is no full-time management presence when aides are supposed to be assisting residents with their ADLs in early morning and late evening hours. 

Published in Annals of Long-Term Care, Vol. 23, No.1, January, 2015.  Access online only at

Wednesday, November 26, 2014

Visiting Loved Ones with Alzheimer's in Residential Placements

A person with Alzheimer’s having difficulty with Activities of Daily Living (ADLs) places tremendous stress upon the primary caregiver.  Caring for a loved one no longer able to follow simple directions may translate into providing daily assistance with medication, bathing, getting dressed and undressed, toileting, and eating.  In addition, many caregivers endure seemingly endless hours of repetitive questioning by their loved ones and often must deal with “shadowing” and other untoward behaviors associated with Alzheimer’s such as outbursts of verbal and physical abuse.  When such conditions become too overwhelming for primary caregivers, 24/7 live-in help or residential placements outside the home are often considered.  Whereas caregivers may find minimal respite time if loved ones willingly participate in social day care programs, or by hiring part-time aides or home “companions,” many caregivers will eventually determine that it is time for their loves ones to be placed in residential facilities outside the home.

Caregivers will need to deal with many new issues once such placements begin.  Issues will vary depending upon many factors such as the quality of the placement facility, the adjustment made by loved ones to their new environment, the health of the loved one with Alzheimer’s and the caregiver, distance from the caregiver’s residence to the ALR, weather, available time, etc.  Regardless of specific issues, however, there is only one question that all caregivers ask themselves starting on placement day:  When and how often should I visit my loved one, and how long should I stay when I visit? 

The answer to this visitation question is extremely personal, laden with intense emotion, and will often cause much anxiety for many caregivers.  Social workers and others advising caregivers need to be cautious with their advice.  Placement day marks the beginning of a new phase of caregivers’ lives, not just the lives of their loved ones with Alzheimer’s.  For caregivers who had been in a loving relationship with their spouse or significant other, placement day is incredibly sad and lonely.  Despite the overwhelming stress relief once loved ones are placed, caregivers can never be fully prepared for all the emotions they will experience on that first day and in the immediate days that follow. 

Placement day forces caregivers to accept the reality that they are now and forever more living apart from their spouses or significant others.  As of that day, the caregiver and loved one are no longer living as a married couple in the same home and must truly begin living separate lives in every significant way.  Even if the decision to place was made with confidence and absence of guilt, the actual awareness of what is for all intents and purposes the end of one’s marriage is still emotionally difficult to accept.  And that is really what a residential placement is ... the end of one’s marriage in all but minor respects.  Despite the fact that the caregiver’s spouse or significant other is still alive, the caregiver becomes a functional widow or widower.  Leading separate lives and only interacting during visits, their marriage, as it had been and as they once knew it to be, is functionally over.

Acceptance is very difficult for many caregivers.  I was part of a loving marriage for nearly 50 years.  My wife, Clare, diagnosed with early or young onset Alzheimer’s disease, has been living in the dementia unit of an assisted living residential facility since September, 2013.  After a goodbye kiss and hug on the day I placed Clare, I went out to the parking lot and cried for several minutes before I could drive home.  When I got home, I cried some more.  After going back that afternoon to visit with Clare, I cried on the drive to and from the facility.  And when I got into our queen sized bed for my first evening at home without Clare lying beside me ... I cried like I had never cried before.  And even now, I still have my bouts of depression and outburst of tears.  I miss the life I had with Clare.

Assuming placement is in a caring facility providing a safe and secure environment, the facility assumes the role of primary caregiver effective on placement day.  Spouses/significant others will always remain caregivers to some degree, but they must morph from primary caregivers to resident advocates.  From placement day forward, their most important role is to ensure that their loved one is receiving proper care each day in their residential facility.
With respect to visitation, there is no handbook to consult for guidance. There is no general “rule” that social workers or eldercare facilitators can share with all caregivers.  Each caregiver will respond differently to the question of how often and when to visit, and initial responses may change over time ... should one visit on a daily basis, 4 or 5 times each week, or just a few days each week?  Should visits be brief for no more than an hour or two, or for extended periods of time?  Should visits occur during meal times so caregiver/advocates can eat with their loved ones, or after meals, or at times of ADLs?  Should visits be in the facility, or should you take your loved one to be with you in places outside of the facility?  Of course, if caregivers are still working, dependent on others for transportation, or live far away from the residential facility, there may not even be that many visitation options.

The only realistic advice to tell caregiver/advocates is to do what they think is best both for themselves and for their spouse or significant other.  Since Alzheimer’s is a progressively degenerative condition, visitation decisions will most likely change as a loved one’s condition worsens.  Will I want to visit Clare more or less often when she is in a wheelchair?  When having difficulty eating?  When in diapers and confined to her bed?  When Clare no longer knows who I am and is unable to recognize me?  Should Clare verbally or physically abuse me, will I want to continue to visit as often? 

After many dedicated years of caregiving for a loved one at home, placements force caregiver/advocates to eventually accept the need to reclaim their own lives.  Primary caregivers often find that in recent years their entire lives have been consumed by caregiving for their loved ones.  Once their loved ones are placed in a facility, primary caregivers will finally have time to do other things with their lives.  They will morph into advocates, but also they will begin to forge new lives apart from their spouse or significant other. 

For nearly a year, I visited Clare every day and took Clare out twice a week to our favorite restaurants and to get together with friends.  Initially I visited for about 2 hours each day, from 3-5 p.m., mostly during a “down time” before dinner.   However, Clare started missing me more and more after dinner and I was sometimes called and asked to return to her facility to calm her down.  After 7 months I increased my visitation time from 3-7 p.m. daily and that, along with increased medication, helped ease Clare’s anxiety a great deal.  However, an unintended consequence was that all of that time spent with Clare was causing me significant depression as my life started to be consumed again by caregiving. 

After 4 or 5 months of daily 4 hour visits I cut back my daily visit time to 90 minutes, coming to visit after dinner until her 7 p.m. activity began.  Clare was much more settled down when I left in the evenings, a “win” for her, and I had more free time for myself and did not feel as constrained, a “win” for me.  But despite reclaiming more time in my life, I still knew I needed to start making a new life for myself without Clare.  I truly enjoyed our visits ... but I also knew that I had to get on with my life.

After several months of these shortened daily visits, I began skipping days.  I joined an early evening bowling league that prevented me from coming to visit on Mondays.  When visiting only 6 days went well for several weeks, I then skipped a second day each week.  I plan to skip more daily visits in the months ahead.  It’s not that I don’t enjoy my time with Clare.  I enjoy our cuddling together on a lounge while she falls asleep in my arms.  However, I also want to free up time to visit more often with my son and family who live far away, and I want to join another early evening bowling league.  I will never stop loving Clare, but I also must make a new life just for myself.  At age 68, I must decide how I want to spend my time in my remaining years as an individual apart from Clare.  I remain married to the woman I have loved dearly for nearly 50 years, but I also accept the reality that I am already “widowed” in a very real sense.

How often should caregiver/advocates visit loved ones in a facility?  There is no one right answer.  One should visit as often and for as long as one wants to visit or needs to visit.  For one person it may mean visiting every day and for another it may not.  For one person it may mean all day visits and for another it may be visits for only an hour or two.  Each caregiver/advocate should listen carefully to advice from those who love and care about them.  But, ultimately, they must do what is right for themselves, and whatever decision they make, by definition, is the right decision.  

Published in Annals of Long-Term Care.  Vol. 22, No. 11, November 26, 2014.  Access online only at:

Tuesday, November 11, 2014

Dementia units require full-time managers

I am a retired public school principal.  Sometimes I was the first person to arrive at my school in the morning and the last one out the door at night.  I know that the various administrators at my wife’s ALR most likely arrive very early on some days and stay very late on others.  Just as was true for me, however, most of their time onsite is during daytime hours.

But when I was a principal and there was a very early morning activity involving children and teachers, such as a band rehearsal, with children and teachers arriving 90 minutes before school started, I was there.  And when there were evening functions involving children and teachers, such as a play, that may have lasted until 10 p.m., I was there.  My point is that, as the manager of my school, whenever there were children and teachers in the building, I felt that it was my responsibility to be there to observe and evaluate personnel and programs, and to be available to handle any emergencies that might occur.

I view ALR management as similar to that of a school.  Supervision and evaluation of personnel and programs/operations in their departments are the most important daily responsibilities for most, if not all, ALR administrators.  During the time that Clare has been in Reflections, there have been occasions when individual staff members have not performed their jobs satisfactorily.  In almost every instance, the unsatisfactory staff performance has been in the early morning hours before the unit director usually arrived, or in the evening hours after the unit director has usually left for the day.

Each time I have brought such instances to the attention of the Reflections unit director, or to the executive director, they have been dealt with properly.  Aides have been reminded about doing this or that properly, and some aides were probably reprimanded.  In addition, some aides have been transferred out of the unit.  However, that misses the larger issue ... the need for daily supervision of staff and programs/operations in the dementia unit beyond the normal daytime working hours.

Clare has declined to the point where she needs daily assistance to some extent with virtually all of her activities of daily living.  There have been times when Clare has been dressed in the same outfit two days in a row, dressed inappropriately for that day’s weather, has been given someone else’s clothing to wear, or has not been showered properly.  Whenever I discovered such situations during my evening visits, I needed to wait until the next day to inform the unit director because he was already gone for the day.  Then the director often had to wait at least one more day before he could even meet with the early morning aides responsible because they were gone by the time he had arrived that next day.  Sometimes the wait was several additional days because some Reflections aides work different days each week and even more days would pass before the director and aide were there at the same time. This is not how an administrator should supervise staff! 

And how does an administrator periodically formally evaluate staff that work the majority of their hours when the director is not present to personally observe their interactions with residents on a daily basis?

The same problem exists with supervision of programs and operations in Clare’s dementia unit.  I visit with Clare after she has had her dinner and take her to a lounge in another part of the ALR until 7 p.m.  I then bring Clare back to her unit, reminding her of the activity she will have between 7-8 p.m. according to the dementia unit monthly calendar.  However, too often I have discovered that the aide responsible for that program ... bingo, trivia game, sing-along, etc. ... was not leading that program and all the dementia residents were sitting in a dark room watching TV.  Once again, I cannot report that to the director until the next day ... but that is already too late because if Clare was unable to actively engage in her 7 p.m. program, the consequences were often greater anxiety.

It is very common for people with dementia to experience greater confusion and anxiety as the day progresses ... a condition so common that it has its own description, “sundowning.”  Clare has been sundowning for several years.  She usually actively engages in each of her activities, but during program transitions and “down times” she often misses me a lot and repeatedly asks aides where I am.  As the day progresses, she often grows increasingly confused and agitated, missing me even more.  When the 7 p.m. program does not take place as scheduled, Clare’s likelihood of worsening sundowning increases.  On some days I’ve received calls to please return to her ALR to calm her down.

If an administrator were present in the evening every night, the 7 p.m. programs would always take place.  If that program could not take place as planned on any given evening due to an unforeseen problem, the onsite administrator would quickly find a suitable replacement program and assign an aide to lead it so residents wouldn’t all just be sitting around watching TV.  And it is the same with daily operations.  An onsite administrator walking around in the mornings would readily observe if residents’ clean clothing is properly hung up or sitting in piles on closet floors, and easily notice other problems that could be quickly remedied.

I would expect that early morning, late afternoon and evening aides would also routinely act more responsibly if they knew that they were being supervised daily by an onsite administrator.  Most of Clare’s aides are very dedicated to helping residents, but some aides occasionally slack off knowing that there is no administrator present to observe and evaluate their behavior.  For example, on quite a few occasions I have observed several aides talking among themselves far apart from, and with backs turned to, the residents they were supposed to be supervising.  I doubt this would happen often were an onsite administrator present. 

One would think that ALR corporate management would want supervision of their dementia residents to be a top priority.  These are their residents most likely to be taking a lot of daily medication, most likely to fall or wander and injure themselves or others, and most likely to be confused and possibly try to do something that they should not attempt to do.  Dementia residents are often among the most physically and emotionally fragile ALR residents, those most in need of assistance.  To reduce the risk of accidents and untoward incidents, one would think that ALR corporate management would want their dementia units to have a full-time administrator onsite to better ensure that aides are doing their jobs properly in the early morning and evening hours.

Clare’s ALR has three shifts of aides ... 7 a.m. – 3 p.m., 3 p.m. – 11 p.m., and 11 p.m. – 7 a.m.  Hopefully, all residents are in bed and asleep from 11 p.m. until 5 a.m., so perhaps having an onsite administrator present during those 6 hours may be an unnecessary luxury.  Maybe hiring administrators to supervise dementia units 24/7 is asking too much.  But for those other 18 hours ... when residents are getting washed and dressed, receiving their meds, eating their meals, and participating in activities ... the quality of each resident’s life is largely determined by the unit aides and how well they implement daily operations.   ALR corporate management should make sure that supervisors are onsite to supervise aides working with dementia residents during each of these 18 hours.  

Published in McKnight's Long-Term Care News.  November 10, 2014, online only.  Access at:

Wednesday, October 8, 2014

Breaking Free From the Caregiver Prison: Can Assisted Living Social Workers Help?

(Originally submitted title ... Can Social Workers Help Caregivers Avoid Returning to “Caregiver Prison?")

People with Alzheimer’s in need of 24/7 care and supervision are often placed in assisted living or nursing home facilities when caregivers can no longer provide the care they need at home.  My wife, Clare, has Alzheimer’s, and after being her 24/7 caregiver for several years, when social day care programs no longer provided me enough respite time I had to place Clare in the dementia unit of an assisted living residence facility (ALR).  She has now been living apart from me for more than a year. 

Initial benefits to me as a caregiver
For the first six months after placement, I came to visit Clare daily from 3-5 p.m., brought Clare to her dining room for dinner, and I went home.  Sometimes I signed out Clare much earlier in the day to take her for dinner and/or to enjoy recreational activities.  Whenever I took Clare out, I’d always have her back in time for her 7 p.m. activity.  After those first six months, however, Clare grew increasingly anxious from the time dinner ended until her next activity began at 7 p.m., and she sometimes remained anxious throughout the rest of the evening.  Clare was missing me a lot and asking when I was coming to visit, forgetting that I had just been there hours earlier.  I was receiving evening calls at home from ALR aides asking for my help.  Clare would get on the phone very upset and I would calm her down, or return to the facility to calm her down in person. 

The ALR social worker said that Clare was increasingly requiring individualized attention from aides at these times, but the facility was not staffed sufficiently to allow one of their aides to spend time exclusively with one resident on a regular basis.  The social worker suggested that we try an experiment ... I would either hire an aide or stay with Clare myself between 5:45-7 p.m. when Clare was most anxious.  The hope was that if Clare was not anxious heading into her 7 p.m. activity, she might remain calm throughout the evening.  Clare’s happiness was and remains my number one priority, so I told the social worker that I would continue visiting from 3-5 p.m. and bring Clare to dinner as I had been doing, but then I would stay and eat a “bag supper” in an adjacent room so I could be with Clare again from the time she finished dinner until 7 p.m.  The experiment worked and Clare’s anxiety in the evenings disappeared, just as we had hoped.  But there was an unintended consequence for me.

Unintended consequence ... “caregiver prison”
After visiting from 3-7 p.m. for four months, I realized that I had re-entered “caregiver prison.”  There’s no other way to describe it.  I felt trapped.  Adding in a half hour on each end of my visit for travel, etc., my daily visits now took at least five hours out of my day, seven days a week.  I started resenting those 5 hours I was giving up each day.  I also was tired of eating a “bag supper” of PB&J sandwiches and/or “fast food” each evening.  I was usually eating a “real” supper later on that evening, and I had gained 15 pounds during those 4 months.  I wasn’t sleeping well, and I was mentally, physically, and emotionally exhausted each day.  Some of my closest family members and friends suggested that I wean myself away from those four hour daily visits, but I resisted ... until I realized that I had unintentionally re-entered “caregiver prison.”

This was not the first time I had been in caregiver prison.  For several months prior to her ALR placement, Clare was with me every minute of every day except for the 20 hours each week that she spent in social day care programs.  Unable to leave Clare alone unsupervised and with her unwillingness to accept a companion or health aide in our home, I felt like a prisoner.  Wherever I was, she was.  The lessening of stress was palpable once Clare was placed in her ALR.  I had my freedom back.  I had my privacy back.  But I let myself get lulled into forfeiting that freedom and privacy six months later by agreeing to increase my daily visit time from 2 to 4 hours.  

I made the decision to try another experiment.  I decided not to arrive anymore at 3 p.m., unless I was taking Clare out that afternoon.  Instead, I would not arrive until Clare finished her dinner, hoping that she would not even realize that I was arriving later than before.  I would then visit with her until the 7 p.m. activity began. 

My experiment worked.  Clare was enjoying spending that 3-5 p.m. time slot in activities with her group, totally enjoying her time with me after dinner, and hardly missing me at all after I left each evening at 7 p.m.  This new experiment was a win-win ... Clare was enjoying her evening activities without daily anxiety, and I was no longer feeling as if I were in caregiver prison.  

I cannot fault the ALR social worker for not suggesting this modification earlier.  To her credit, the social worker did speak with me several times to review how things were going, and each time I said that all was well.  I never once shared that whereas the experiment seemed to be working wonderfully for reducing Clare’s daily anxiety, it was increasing my daily stress and anxiety.  The ALR social worker had no way of knowing how physically, mentally, and emotionally drained I was each evening.  She had no idea of how poorly I was sleeping and eating. 

Had the ALR social worker known about these unintended consequences, I am confident that she would have intervened earlier to suggest a modification to that first experiment.  In fact, the same week I decided to cut back and notified the social worker to that effect, I was told that she was going to actually suggest a similar cutback in hours to me.

Can institutional social workers help prevent caregiver prison?
Is there a way for social workers in institutional settings to be more alert to possible unintended consequences to caregivers of their residents?  Should social workers consider ways to elicit personal information from former caregivers of their dementia residents when major changes are made in routines?  Social workers in institutional settings cannot possibly establish close personal relationships with caregivers that develop naturally in other settings, such as in weekly support groups.  If I had still been attending weekly meetings in a spouse support group, I would have shared personal information about the negative effects those longer visits were having on my health and stress level.  I am sure that the support group social worker would have suggested that it was time to modify that experiment. 

In a caregiver support group, caregiver needs are the main focus of the social worker.  But in an institutional setting for people with Alzheimer’s, the social worker’s focus is on the needs of the resident with Alzheimer’s.  And that is how it should be.  But, perhaps, some brief questionnaire or other process can elicit helpful personal information to evaluate effects on caregivers when there are major changes made with resident-caregiver interactions.  Of course, any such questionnaire or process is still dependent upon the caregiver feeling comfortable enough to share such personal information.  Had I been asked if the additional daily visit hours were causing me greater anxiety, or causing disruptions in sleeping or eating patterns, I might have volunteered that information.  Or, truthfully, I may not have been honest enough to share that information. 

But this might be a matter worthy of further consideration.  A case can be made that ALR social workers already have enough on their plate dealing with their caseloads of dementia residents and regular residents without adding more time-consuming responsibilities dealing with the former full-time caregivers of their dementia residents.  However, if social workers can come up with a process that can elicit helpful information and does not require too much additional time, that could help social workers prevent some former caregivers from returning to caregiver prison. 

Published in Annals of Long Term Care, Vol. 22, no. 10, October, 2014 online only.  Access at:

Wednesday, October 1, 2014

3 Steps To Fight Alzheimer's

Note:  The Alzheimer’s Solutions Summit, an intergovernmental hearing, was held on July 1, 2014 at the Long Island Alzheimer’s Foundation.  The hearing was initiated and chaired by Congressman Steve Israel (D-NY), co-hosted with State Senator Jack Martins (R-NY) and Assemblyman Charles Lavine (D-NY).  I was invited by Congressman Israel to testify as part of a caregiver panel.  In my allotted 5 minutes I discussed three major issues from my caregiver’s perspective.  Following that hearing, I submitted my remarks for consideration as a blog posting on the website of USAgainstAlzheimer’s, a 501(c)(4) organization engaging in public advocacy, federal relations, grassroots activity, and voter education.

First, our federal government must re-prioritize its spending to make a stronger commitment to fund Alzheimer’s research.  4 years ago, Congress declared War on Alzheimer’s with the creation of NAPA, the National Alzheimer’s Project Act.  But, unfortunately, Congress never authorized any additional money for Alzheimer’s research when it created NAPA.  Since we declared War on HIV/AIDS about 25 years ago, our federal government has spent billions of dollars to fight this disease, leading to effective means of prevention and treatment.  The death rate from HIV/AIDS fell 42% this past decade and it has not been listed among the top 15 causes of death in this country since 1997.  Contrast that with Alzheimer’s, the 6th leading cause of death in this country, with no effective means of prevention or treatment.  The death rate from Alzheimer’s rose 68% this past decade.  Yet, during each of the past 5 years our National Institutes of Health have continued to fund more than $3 billion on HIV/AIDS research compared to only about $500 million on Alzheimer’s research. 

President Obama’s 2014 Budget contains an additional $2.4 billion for HIV/AIDS, but only $100 million more for Alzheimer’s.  So, where is this supposed War on Alzheimer’s?  We must re-prioritize our federal spending if we truly want to end Alzheimer’s.  We should also support the state bond initiative promoted by Congressman Israel and Assemblyman Lavine to make New York our country’s center for Alzheimer’s research.

Second, we must reform medical practice. Doctors must pay more attention to caregivers during office visits.  Too many caregivers report that their earliest observations of possible Alzheimer’s symptoms in their loved ones were ignored by doctors.  I propose that doctors administer the AD8 questionnaire to all caregivers expressing such concerns.  It only takes 2 - 3 minutes, and research already supports the AD8 as being more effective to screen for early signs of Alzheimer’s than the widely used patient test, the Mini-Mental State Examination, or MMSE.  If the AD8 validates caregiver concerns, doctors should do a complete neuropsychological evaluation of the patient ... even if they don’t personally observe Alzheimer’s symptoms and even if MMSE scores don’t indicate any problems.  

When issuing an Alzheimer’s diagnosis, doctors should also inform patients and caregivers about support groups and helpful social day care programs.  Doctors should also provide a handout explaining the progression of Alzheimer’s over time, with a strong recommendation to meet with an eldercare attorney and financial advisor to properly prepare for the future, making sure that all end-of-life documents are in order ... will, trust, living will, health care proxy, durable power of attorney.  We hear too often in support groups ... “I wish someone had told me about this earlier so I could have been better prepared.”

Doctors also need to be more direct with patients and caregivers about the limited effectiveness of medications.  There is absolutely no clinical trial evidence indicating that current FDA-approved Alzheimer’s medications are effective beyond one year ... if they have any benefit at all.  Not even Big Pharma claims their meds are effective beyond a year, if effective at all.  Yet many doctors prescribe these meds year after year, resulting in caregivers spending thousands of dollars on what I refer to as “expensive bottles of hope.”  This money could be much better spent by caregivers on day care programs, aides, or other services.

Third, we must find ways to reduce the high cost for Alzheimer’s care.  Unless one is wealthy enough to self-pay, poor enough to qualify for Medicaid, or has a good long term health care policy ... costs for Alzheimer’s care can completely drain retirement savings and drastically change the surviving caregiver’s future.  Monthly costs for day care programs and home health care aides can easily run $2-3000 each month.  For 24/7 aides, costs can double or triple.  Assisted living for Alzheimer’s residents can cost $6-7000 each month, and if a private aide is also needed, monthly costs can easily double.  Basic nursing home costs often start at around $12-15000 per month for Alzheimer’s patients.  These costs are prohibitive for most middle class Long Islanders. 

We should consider tax credits or subsidies to non-profits so they can provide more support groups and affordable day care programs.  We should consider tax credits or subsidies to assisted living and nursing home facilities so they can provide more staff training and programs for residents.  And we should consider tax credits or subsidies, along with changes in current Medicare and Medicaid legislation, to provide caregivers with some cost relief. 

It won’t be easy, but somehow we must find ways to lower the high cost of caring for a loved one with Alzheimer’s.   

Published as a guest blog on the “by2020” site of USAGainstAlzheimer’s, October 1, 2014.   Access online only at