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: