Thursday, April 20, 2017

Tips for Improving Caregiver Communication In ALFs and NHs

When making assisted living facility (ALF) and nursing home (NH) placements for loved ones, families relinquish their roles as primary caregivers, entrusting that role to institutional staff.  Staff must realize, however, that some family caregivers will still remain actively involved with their loved one’s care.
The last thing an ALF/NH administrator wants to hear is how his or her facility is developing a reputation as one where caregiver concerns about their loved ones are ignored by an uncaring staff. This is a sure way for bad PR to raise its ugly face in community discussions as well as possibly lead to negative facility reviews online. 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 caregiver communications in a timely fashion. All staff must be on mission, not just most staff.
One of the institution’s goals should always be to provide as much appropriate information to caregivers as possible in a timely manner. Caregivers should always be informed whenever there are significant changes in their loved one’s health, behavior, or routine practices. In addition, should there be a problem, inform the concerned caregiver immediately—don’t wait for either the problem to escalate or for the caregiver to find out before being informed. Caregivers should also be informed should there be a significant program or staffing change.
Below are some detailed examples of and strategies for effective communication.
Report on resident/patient behaviors
Family caregivers should be informed whenever there are significant changes in a resident’s daily routines, health, or behavior. For example, I can recall when I noted significant changes in my wife’s sleeping and eating habits. When I brought my concerns to the attention of administrators, I was told that those habits had changed several weeks ago. Excuse me? Why wasn’t I informed of those changes instead of being left to discover them by myself?
One easy way for supervisors to communicate effectively with concerned caregivers may be to do something similar to what many teachers do for concerned parents. Many teachers send home a weekly check-off sheet noting relative behaviors; the teacher places a check mark or “x” in each box to indicate satisfactory or unsatisfactory progress. In a matter of a few seconds, the teacher can briefly communicate with parents, who can then follow up if more information is desired. ALF/NH supervisors could issue similar brief weekly check-off forms for caregivers who want to be kept informed about changes in sleeping, eating, socializing habits, or one or two other areas.
Hold informal get-togethers with family caregivers
Provide coffee and cookies and invite all concerned caregivers to meet with you and your top administrative staff two or three times each year. Such settings allow you to share information about significant changes that are coming or have recently been implemented. These do not have to be lengthy meetings, just long enough for you to inform caregivers, highlight institutional or staff accomplishments, listen to any suggestions for change, and receive valuable feedback on existing practices. 
Announce personnel and program changes
Family caregivers should always be informed whenever there are significant changes in personnel working with their loved ones. I often saw new faces in my wife’s dementia unit, but I was never told about those changes and never given the names of new personnel, making it much more difficult for me to discuss concerns with superiors. Similarly, program time changes often affected my ability to visit with my wife; a simple heads-up about a time change in programs would have enabled me to avoid any problems. Obviously, advance notice cannot always be given. However, very often, advance notice can easily be given, it just isn’t done.
Issue an informative, monthly newsletter
ALFs and NHs routinely provide monthly calendars of events and daily activities for their dementia residents, but few provide names of staff members or phone numbers/email addresses for administrative staff, which would help to facilitate communication with concerned caregivers. A monthly newsletter could also highlight differences in institutional practice for dementia residents as compared with other residents. For example, for the entire first year my wife was in her ALF, I would see the daily menu posted in the ALF dining room and assumed my wife was given those same meal choices each day. Only through observation at meal times did I discover that dementia residents didn’t choose their meals as did other residents. Any practice in the dementia unit—or other units—that is at variance with overall ALF practices could be clearly stated in such a newsletter, along with other helpful information for caregivers to know.

Published in Annals of Long-Term Care, April 20, 2017.  Access online only at:

Friday, April 14, 2017

Inspirational Thoughts for Alzheimer’s Caregivers, Widows, and Widowers

It’s now been one year since the death of my wife, Clare, after her ten year struggle with Alzheimer’s disease (AD).  As an AD spouse for ten years, I experienced more days of sadness and grief than I can count.  On some days, my sadness led to severe depression.  I wanted to continue living so I could be with my children and grandchildren, as well as with special relatives and friends, but at the same time I questioned how I could ever again find happiness again similar to what I had experienced with Clare.  On some days I literally did not get out of bed because I was so depressed.  I felt married and widowed at the same time those last few years as Clare’s AD worsened to where she no longer knew my name, or that I was her husband.

There were several inspirational thoughts that keep me afloat during my darkest days as a caregiver, and some of these thoughts were extremely helpful as I dealt with the sadness, grief, and tremendous feelings of loss that I experienced for many months after Clare was gone.  I present them here in the hope that one or more of these inspirational thoughts may also be helpful to you.

For many months I kept singing along to two Katy Perry songs ... “Roar” and “By the Grace of God.”  On my worst days I sang them aloud, over and over and over again, shouting more than singing, both at home and in my car.  In “Roar,” 1 Perry sings about having “the eye of the tiger, a fighter,” and that she is “a “champion.”   I wanted to feel like a champion.  I wanted to feel in control of my life again, and feel that I was going to come back from my despair and depression. 

In “By the Grace of God,” 2 Perry sings about how, after a love break-up, she finds herself lying on her bathroom floor.  She sings, “I picked myself back up, I knew I had to stay, I put one foot in front of the other, I looked in the mirror and decided to stay.”  She also sang about how “the truth was like swallowing sand,” a fairly good description of how I felt on some days knowing that I was losing Clare more and more each day and soon would be widowed ... and how I felt after I had to face the reality that she was now gone forever.  Sadly, the only certainty with AD is that death is inevitable ... there are no AD survivors.

There were many other phrases in "By the Grace of God" that I related to ... lines such as "Running on empty, so out of gas" and "Found I wasn't so tough."  But that song also had the line, "I am not giving up."  Louder and louder, over and over again, I would shout out that song ... and it helped me.  A lot.

Something else that helped me a lot was re-reading the “Serenity Prayer” 3 that I keep posted in my home office ... God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.”  These words reminded me that I had to accept the reality that Clare was dying and there was absolutely nothing I could do to change that reality.  All I could do was make sure that Clare was receiving the best care possible and was as happy as possible. 
Those same words were just as valuable after I lost Clare ... I had to accept that she was gone from my life, but also accept the reality that I needed to move on with my new life as a widower.  I also knew I had to accept the fact that I now had to make some important decisions in my life and not dwell on what might have been or could have been.  I had to focus on what I needed to do in order to give myself the best opportunity to live a reasonably happy and healthy life as a widower.
I also came across some very wise words from Swiss psychiatrist Elisabeth Kubler-Ross, who wrote this about grief: “The reality is that you will grieve forever.  You will not ‘get over’ the loss of a loved one; you will learn to live with it.  You will heal and you will rebuild yourself around the loss you have suffered.  You will be whole again but you will never be the same.  Nor should you be the same nor would you want to.” 4

And that brings me to the last inspirational thought I want to share, words that led to my “Aha” moment.  I no longer remember where I read these words or who wrote them, but the author said that when you lose a loved one, instead of looking back with sadness at your loss you should think instead about how fortunate you were to have had your loved one in your life for all of those years. 

When I read those words, I literally looked at a picture of Clare and cried ... but I also smiled, recognizing how incredibly lucky I was to have been with Clare for all those years, and how instead of mourning her loss each day I should feel incredibly happy and lucky that I shared 51 years with her.  I know that I will grieve forever, but each month I am making progress in learning how to live with that grief.
These inspirational thoughts continue to keep me going even now.  I sincerely hope that one or more of these thoughts may also bring solace to others.  A caregiver watching a loved one die of a degenerative disease such as Alzheimer’s ... a disease that is without any hope of “remission” or “survival” ... cannot avoid deep emotional pain and anticipatory grief.  An Alzheimer’s widow or widower may find that pain and grief remaining for a long time after the death of a loved one. 

But if one can find some comfort in the words of others, the path to moving on with one’s life during and after caring for a loved one with Alzheimer’s may be somewhat easier.  I know it was that way for me.

Published in AFA Care Quarterly, Spring, 2017, pp. 8-9.  NOTE:  This issue has a wedding picture of Clare and me on its cover, along with another picture of us in happier times, and includes several more pictures of Clare and me alongside my article.  This issue can be accessed online at: