Looking Back at the Assisted Living Decision for a Loved One with Alzheimer's

Seeking out an Assisted Living Facility

My wife, Clare, was admitted into the “Reflections” unit of an assisted living facility in September, 2013.  “Reflections” is the name of a separate lockdown wing with 32 residents, all with some form of dementia but most with Alzheimer’s disease (AD).  I was Clare’s 24/7 caregiver while she struggled with her cognitive decline starting in 2006, even though Clare was not “officially” diagnosed with young onset AD until 2009, one month after turning 63.  When Clare’s decline had progressed to the point where I could no longer provide her with the quality of care she deserved, and when we began having daily arguments over routines such as bathing, dressing, eating and taking medication, I knew that we were approaching the time for an Assisted Living Residence (ALR) placement. 

When we had retired in 2000, we had discussed our thoughts about what we wanted should either of us ever need long term care.  We were aware of friends and family who had chosen different paths ... those who kept loved ones at home for as long as possible with 24/7 live-in help, and those who had placed loved ones in ALRs and nursing homes.  Neither of us wanted live-in help, so we took out long term health care insurance policies that would provide maximum coverage if an ALR or nursing home placement were ever to be needed.  Despite these preferences expressed more than a dozen years earlier, I again reviewed our options with Clare during lucid moments in 2013 prior to her ALR placement, and Clare again said she did not want to remain home with live-in assistance. 

I made a thorough search of Long Island ALRs that had separate units for those with dementia.  I wanted Clare placed in a facility that had certification to provide “continuity of care,” certification not held by most assisted living facilities.  In New York, some ALRs have EALR (Enhanced Assisted Living Residence) and/or SNALR (Special Needs Assisted Living Residence) certification.  Residents can usually remain in these ALRs until death, absent psychiatric disorders that can make a resident dangerous to oneself or others, or the need for 24/7 skilled nursing or medical care.  This was very important to both of us because we knew of caregivers whose loved ones with AD had to be discharged from their ALRs when they became totally incontinent or immobile.  Facilities holding EALR or SNALR certification also require aides to have ongoing specialized training to learn how to deal more effectively with people with dementia, and that requirement also made EALR and SNALR certified ALRs more attractive to us.

The good about Clare’s ALR

Placing Clare in her current ALR turned out to be a complete “win-win” decision.  She receives high quality care in their 32 bed Reflections unit, with a varied daily program of activities that keep her engaged and happy.  On most days, Clare has organized exercise periods twice a day ranging from Zumba, yoga, and balloon volleyball to walking, stretching, and other fitness activities.  On most days she has at least one art activity and one music activity, and on many days she has two different musical activities ranging from sing-alongs to listening to professional musicians who come regularly to sing and entertain.  Clare also participates in a wide range of other daily activities ... games, trivia contests, crafts, etc. ... and she watches matinee and evening movies in a dedicated cinema room that has a very large movie screen, theatre style seating, and even a popcorn machine! 

There are many other indoor and outdoor activities on site.  There are daily socials with different delicious snacks served each day, and daily meals are of restaurant quality.  Reflections residents also have the opportunity to go on frequent outings each month via mini-bus to see musicals in local theatres, to enjoy meals at various neighborhood restaurants, and to visit local museums at nominal charges.  There are also free outings for scenic drives and visits to nearby beaches and towns.  And, when appropriate, Reflections residents are taken to join non-Reflections residents to enjoy special entertainment activities provided by the ALR.  

As her spouse caregiver, I wanted Clare to be in a safe and secure environment, to receive high quality care, and to engage in enjoyable activities and socialization experiences each day once it was time for her to leave our home and live in an ALR.  Mission accomplished!  Clare and I are both happy that, given the reality she could no longer remain with me in our house, she is in a positive environment.  That is why I refer to this placement as a win-win.

The bad about Clare’s ALR

Clare’s ALR has a lot to offer its dementia residents.  This was and continues to be the best ALR for Clare and we are both pleased with our choice.  Whereas I would now assign this facility an overall grade of “A+,” some inconsistencies continue to disappoint me.  As a retired public school principal, I know firsthand how even the best of bureaucratic institutions is going to have “glitches” from time to time.  I also know that, on some days, the proverbial “Murphy’s Law” will frustrate the best administrators.   However, I also know that to maximize chances for mission success and minimize “glitches” and “Murphy’s Law” days from happening frequently, administrators must insure that staff is properly trained, informed of the high expectations and standards expected for daily performance, and regularly observed and supervised.  Few administrative tasks are more important.

I regularly witness all administrators committed to insuring the safety and well-being of Reflections residents, and some administrators definitely hold staff to very high performance expectations.  But I do not see all administrators providing the necessary supervision to ensure that all staff members are doing their jobs properly.  Since bringing ongoing concerns to the attention of the executive director, there has been tremendous improvement.  However, I should not have had to bring matters to the attention of the ALR executive director ... they should have been handled properly by subordinate directors with direct responsibility for the Reflections unit.

In addition, communication with some administrators was very uneven until the executive director intervened.  On some occasions I had waited as long as 12 days to receive responses to emails or voice mails.  Such delayed response time is totally unacceptable.  There were also several occasions when administrators were not on the same page with each other, with one administrator asking me to do something one way and another administrator asking me to do that same thing completely differently.  Therefore, it appears that this ALR’s internal communication among administrators was at times as poor as their external communication with caregivers.

Two Suggestions for Caregivers

I knew from Clare’s first day in her ALR that even though I was no longer Clare’s 24/7 caregiver, I did not relinquish my caregiving responsibilities completely after placement.   I would offer these suggestions for caregivers once they have placed their loved ones in an ALR:

1.  You will always remain a caregiver for your loved one.  Even though the ALR is now ‘in charge’ of your loved one’s life for most of the day, you must still make sure that your loved one is handling the activities of daily living properly ... eating well, sleeping well, etc.  You also need to be sure that your loved one’s adjustment to the ALR is as good as possible when first admitted, and that it continues to be a “good marriage.”  Over time you will discover how to maximize your visits, the best times to visit, the best times for other family and friends to visit, if occasionally taking your loved one out for meals or short day trips would be a positive action, etc.  You must also continue to ask questions to learn about any changes in your loved one’s behavior and activity participation because, sadly, you may not be able to count on ALR personnel to communicate those changes to you in a timely fashion.  You must always remain vigilant. 

If you are not pleased with your loved one’s placement, and are unable to make that adjustment easier despite all of your actions to help make that happen, meet with the highest level administrator of that facility.  You may be lucky as I was to find an executive director who will listen to your concerns and help to resolve them if at all possible.  If all of your efforts to bring about change are unsuccessful, however, in the most extreme situation it may even be necessary to seek a placement in a different facility.

2.  You must now also assume a new role as an advocate.  Once you have relinquished primary responsibility for 24/7 caregiving to the ALR, you must monitor how effectively that ALR is doing its job.  And you must be willing to tenaciously advocate for change when necessary.  Even in the best of ALRs, there may be a lack of sufficient staffing and/or supervision at times, and you must act as your loved one’s advocate if you observe unmet needs or actions requiring more attention.  Such is the situation in which I now find myself.  You may need to meet again and again with the people in charge who are responsible for making the changes you are seeking.  But you must not give up, regardless of obstacles that may be in your path and regardless of your frustration at the slow pace of improvement.  Remember, most ALRs, like most bureaucratic institutions, are inherently status quo oriented and resistant to change.  Too often the answer to a question about why something is done in a particular way, or the response to a suggestion for change, is a variation of, “Well, this the way we’ve always done it.”  So be prepared to continue advocating long and hard for the changes you want to see happen.  Chances are, most changes will come about slowly and incrementally.

Most importantly, caregivers must always remember that even in the most caring of ALRs, nobody is going to care about your loved one as much as you do.  Nobody.  So as your major role as your loved one’s caregiver decreases after an ALR placement, your new role as your loved one’s major advocate is just beginning.

Four Suggestions for ALR Executive Directors/Managers

I would also offer four suggestions for ALR executives to deal with the issues that I have raised in this article.  And remember ... these are suggestions for improvement at what I consider an A+ rated facility, even with its glitches.

1.  Meet occasionally with caregivers as a group.  Despite caregivers handing over almost all of the responsibilities for caring to the ALR, caregivers still know their loved ones better than anyone else.  Caregivers may be able to offer practical suggestions for improving daily operations, or suggest new activity programming opportunities, or make other helpful suggestions for improvement in routines or daily practices.  More importantly, caregivers can give valuable feedback regarding how your ALR’s mission may be compromised by staff.  Much akin to principals being available to meet with parents at monthly PTA meetings, ALR directors and managers could learn a lot from occasionally meeting with caregivers of their dementia residents.  Face-to-face meetings give the administrator the opportunity to clarify and explain policies, correct and defuse misinformation, and hear comments that may be very helpful to making their institution function more effectively and efficiently.

2. Impress upon all staff the need for timely communication with caregivers.  The last thing an ALR director or manager needs to hear from a caregiver is how concerns about their loved ones go unanswered or are ignored.  This is a sure way for bad PR to raise its ugly face in community discussions as well as possibly lead to negative reviews of your facility on internet sites.  This is especially harmful if such perceptions are formed as a result of the actions ... or inactions ... of just one or a few staff members who do not do their jobs properly, or who fail to respond to emails or phone calls in a timely fashion.  The ALR chief executive needs to learn about such matters while issues are easily resolvable.  Even if only one or two key staff members do not value timely communication with caregivers, that is one or two staff members too many.  Just as with the proverbial weak link in a fence, all staff must be on mission, not just most staff

3. Provide a handbook for caregivers of dementia residents  - Anything in the dementia unit that is at variance with overall ALR practices should be clearly stated.  The handbook should also include a staff list of names and titles of various administrators responsible for oversight of the dementia unit, along with names of aides on various shifts who will work with residents in the dementia unit.  Phone numbers and email addresses to facilitate contact should also be included.

4. Post in each room a list of care plan activities aides must carry out each day – Each dementia resident will have a different daily care plan requiring no, little, some or a lot of assistance with daily Activities of Daily Living (ADLs).  Whatever that level of care is, there should be a checklist posted somewhere in each room so all aides will know exactly what routines the dementia resident needs assistance in doing, and just how much assistance is needed.  For example, does the resident shower by him/herself requiring only that shampoo be provided, or must the aide actually apply the shampoo to the resident’s hair? 

The bottom line

Now closing in on a year after admission into her ALR, Clare’s AD decline has continued and she is more confused and more tired each day.  But despite this decline, Clare still looks younger and healthier than she has in years.  Perhaps this is because she is now exercising and socializing with friends each day.  Or, perhaps this is because she no longer has to worry about anything ... although, I am told by aides, she still gets anxious waiting for me to visit each day and misses me in the evenings.  However, when I visit with Clare each day, she is always smiling and telling me how happy she is and that she has had a wonderful day ... despite being unable to tell me about even one activity she participated in that day, or even one meal she has eaten, or able to recall where she went on an outing.  Can I realistically ask for more than that?

Clare’s ALR also keeps caregivers’ needs in mind.  When I come to see Clare each day, we often head first to their bistro, a room available 24/7.  There is a coffee machine where one can get everything from cappuccino to latte, regular or decaf.  There is also a juice machine, and snacks ranging from fresh fruit to several varieties of cookies are always available.  We then often go to sit in one of their many lounges.  Some have tables and chairs, some have sofas and easy chairs, and all have wide screen television sets mounted on the walls.  We can also go to relax in their library or living room should we want to do so.  Should I want to eat alone with Clare, or be joined by family and friends, I can reserve their private dining room for lunch or supper where, for nominal cost, we can select appetizers, entrees and desserts off the same menu given to the residents.  (Menus change daily.)  This room easily seats 10-12 people.  I can also reserve their ‘country kitchen’ at no cost and bring in my own food or have food delivered.  This room has a refrigerator and microwave oven, easily seating 20 around two large tables.  Clare and I have already had several family parties and holiday celebrations in this room with our children and grandchildren. 

Our children and grandchildren also appreciate the amenities of having quiet lounges to spend time with their mother/grandmother during their afternoon or evening visits ... while also availing themselves of juice and snacks from the bistro!  In addition, there is also a game room, computer room, billiard room, library, shuffleboard court, a golf putting green, a walking path and garden, and even an outdoor swimming pool for use by residents and guests.  Can I ask for more than that for when I visit with Clare each day, or for when our children and grandchildren come to visit with Clare?

                 

Are there still ongoing glitches and communication difficulties?  Yes, but now that one particular administrator and the ALR executive director have welcomed and been responsive to hearing my concerns, remaining issues are now resolved quickly. Clare is now receiving excellent care most of the time and enjoying her experience virtually all of the time. That will always be my bottom line ... is Clare happy and is she receiving high quality care.  The answer to both questions is an unqualified “yes,” despite the issues I have addressed in this article. 

Are my standards and expectations for personnel and operations at Clare’s ALR too high?  I don’t think so.  I would hope that all staff at all ALRs would aspire to achieve high quality care for its dementia residents, and be responsive to caregiver concerns in a timely fashion, 100% of the time.  Nothing less should be acceptable.

Published in Annals of Long Term Care (online only), June 20, 2014.  Access at: www.annalsoflongtermcare.com/topic/alzheimers-disease.

Placing a Loved One in Assisted Living

  (Original title, "Helping Caregivers After They Place a Loved One in Assisted Living")

Seven months after placing my wife, Clare, in the dementia unit of a nearby Assisted Living Facility (ALF) in September, 2013 I unexpectedly plunged into a weeklong bout of serious depression.   Until that time, I thought I had been dealing as well as could be expected while adjusting to Clare no longer sharing a bed with me at home after more than 46 years of a wonderful marriage.   

I had been visiting Clare daily from 3-5 p.m., leaving when she went into her dining room for supper.  Clare enjoyed participating in all of her ALF’s activities, but there were no scheduled activities between dinner and 7 p.m., and that time period was becoming increasingly difficult for her.  She would ask aides where I was, tell aides she missed me, asked if she could speak with me by phone, etc.  The social worker told me that Clare was so anxious and missing me so much at that time that an aide had to be with her 1:1 to keep her calm, and this was taking that aide away from being available to help other residents during that time.  The social worker suggested a one week experiment to ease her anxiety between 5:30-7 p.m.  For one week, I’d either hire an aide to be with Clare during that time period, or I could stay with Clare during that time, and then we’d re-evaluate the experiment.  That sounded like a good idea, so I suggested we begin the next day and that I would stay with Clare. 

The social worker also had something else to share with me, telling me that Clare had followed another gentleman to his bedroom the previous night, thinking that he was me.  By the time one of the aides noticed Clare and figured out what was happening, but before the aide could pull her away, Clare had already hugged him and kissed him on the lips while wishing him a good night.

I nodded my head when the social worker finished and said something like, “Well, I knew this day would come eventually so what you’re telling me doesn’t come as a complete surprise ... but I didn’t realize we were already at this point.”  What I didn’t say to the social worker was that I was completely devastated.  Clare had already been having difficulty remembering our children and grandchildren on some days.  But now it was clear that she was starting to forget me ... or at the very least, she was now confused at times with respect to always knowing who I am. 

That news pushed me into depression.  For many months I’d been watching Clare’s appetite diminish, her ability to speak in complete sentences virtually disappear, and her understanding of concepts and word meanings disappear more and more.  She became more frail and more dependent on others with respect to her activities of daily living.  I knew that I would be “the last to go” in her mind ... but this incident demonstrated that the time was getting closer when Clare would no longer remember that I am her husband.

I must have watched at least a dozen hours of television in bed each day that next week.  I ate all my meals in bed.  Except for visiting Clare each day, I did not leave the house.  In short, I had myself a week-long “pity party.”  I cried ... I cried a lot ... about how much I missed Clare and how our future plans had all gone up in smoke at such a comparatively young age (we are both 67).  I also gained 5 or 6 pounds, going to my “comfort foods” for ... well, for comfort ... and I only slept 3 or 4 few hours each night. 

I had apparently reached that place in my life that many Alzheimer’s spouses eventually come to know all too well.  I had to accept that Clare and I now had a relationship more like father-child than husband-wife.  I had to accept that, in a very real sense, I am now both married and widowed at the same time.  Toward the end of that week of depression and after much soul searching, I finally came to accept the reality that my life was forever changed.  Not that I didn’t know that earlier ... but it took me nearly 7 months of grieving followed by one week of depression and introspection, to fully accept the words in the Serenity Prayer.  I knew that I had to have “the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.”  I was now “alone” in our house, all by myself, and Clare would never be here with me again.  I had to accept that, although still married, I am also now a “single man” in many respects and that I have to take back control of my new life.

Here are some suggestions that social workers may want to offer to caregivers based upon what I did to try to get mentally and emotionally healthy again ... to begin taking small steps towards building a new life for myself as a single person. 

1.  Make yourself a “To Do” list for major decisions to be made.

I made up a list of items that I needed to attend to, and then re-arranged those items in priority order.  My first item was to make a decision on whether or not I would stay in my home or move.  Other items on my list included personal appointments I had to make, such as meeting with our attorney and financial advisor, as well as scheduling various repairs and house maintenance.  Once I made the decision to stay in our current house, that led to an expanded list of “To Do” list items that needed attention ... going through all of Clare’s clothing and personal items that have remained untouched since she was admitted into the ALF, and going through the entire house room by room to make it more “livable” according to my needs now that it is just me living in our house.

2.  Get out of the house and set up a regular exercise plan

I went back to the gym three times a week, and went back to bowling, slowly building up my stamina since I’m still recovering from my two surgeries.  As I am writing this, I am already looking forward to returning to golf this spring and joining a summer bowling league.

3.  Remain active with friends and family.

I set up “dates” to do things with friends, mostly involving taking Clare out of the ALF to join them for lunch or supper but also to do things with friends by myself.    I have a weekly lunch date with friends, take my daughter out for breakfast at least once a week, etc.  In short, I am committed to getting myself out of my house to be with others.

4.  Talk about your feelings with others you can trust.

Fortunately, I am still in a loosely defined caregiver support group that meets weekly for lunch and we often call or email each other between those lunch dates.  I shared my feelings with my group members, and their support helped a lot.  I did the same with my best friends and close family members.   Each of them in their own way helped to snap me out of my weeklong depression when the bottom dropped out.  They continued to tell me they were worried about me and, most importantly, they each reminded me how I had to remain strong to be there for Clare ... sufficient motivation to get myself well!

5.  Try to eat and live a healthy life style.

I have battled a weight problem since I was a child, but I gained a lot of weight, 80 pounds, from the time Clare first started exhibiting symptoms of Alzheimer’s and I was now determined to take all of that weight off ... for good.  So, on most if not all days, I’m now eating healthier.  Hopefully, with exercise now back in my life plus additional walking that is also excellent therapy for my legs, I will lose those 80 pounds within two years.

6.  Memorize the Serenity prayer.

When I placed Clare in her ALF it was an emotional time for me, but I had not fully appreciated just how much my emotions continued to be strained even 6 months later.  When I “returned to normal” after my bout with depression, I was more accepting of the reality that Clare and I now and will forever lead separate lives ... except for the few hours a day we will spend together at her ALF or on a day trip outing.  I must make changes in my life to lead a healthier and more productive life style and I cannot let myself dwell in those “dark places” to think about what might have been, or should have been, or what will no longer be.  I now must fully internalize 5 words I have said so often these past few years ... “it is what it is.”

7.  Seek out professional help, if necessary.

If you are feeling delayed post-placement depression similar to what I experienced and you feel you cannot apply my suggestions to help snap you out of your funk ... and have tried, unsuccessfully, to apply other suggestions from people you trust ... then you should immediately seek out professional help from your doctor.  And listen to your close friends and family.  If they suggest that you seek professional help, don’t be shy.  Do it.  You now have a new life to live, one for the most part that will not involve your loved one.  Do whatever you need to do to make sure you can take those next steps, mentally and emotionally, in a healthy way.  As I was reminded, take whatever steps are necessary to end your depression, if for no other reason than to remain strong so you can be there for your loved one.

By the way, that one week experiment of my staying with Clare from 3-7 p.m. has been very successful.  On most days after I escort Clare to dinner at 5 p.m. in her unit, I go to an adjacent room to eat a “bag supper” that I bring with me. Then at 5:45 I pull Clare out to spend time with me in a lounge until her 7 p.m. activity.  On other days I’ve arranged for us to eat together in the ALF’s private dining room or have taken Clare out for dinner.  We are both enjoying that extra time together each day.

And such is my “new normal” ... married for 4 hours a day, and single the rest of the time.  It is what it is.

Published in Social Work Today, May/June 2014 issue, Vol. 14, No. 3, p.30.