Alzheimer's caregiving: The new normal

(Originally submitted with the title, "Alzheimer's Caregivers ... It is What it Is")                     

I’ve been dealing with my wife’s Alzheimer’s disease (AD) for nearly 8 years ... first as her 24/7 caregiver at home, and now as a part-time caregiver and full-time advocate since her placement in the dementia wing of an Assisted Living Facility (ALF) in September, 2013.  One of the many things I have learned through these years is that each new AD decline in behavior and/or skills always leads to a “new normal” period for us.  Each decline requires an adjustment to my wife’s inability to do something she had previously been able to do.  Social workers and other health care professionals can help prepare caregivers accept these new declines and learn how to deal with what lies ahead. 

When well-meaning friends and family ask how things are going, my response is always the same ... “it is what it is.”  There is absolutely nothing I or anyone else can do to prevent my wife’s new AD declines.  Caregivers must prepare themselves for each cycling of a “new normal” period, and the most important preparation is simply to accept that their loved one will, over time, only get worse ... never better.   It is very important for health care professionals to make this clear to caregivers.

For the first four or five years, my wife experienced a series of “cliff falls and plateaus.”  She would seemingly fall off a cliff with a steep decline in a particular area, stabilize as if on a plateau for a period of 3-6 months, and then fall off another cliff.  Our “new normal” only changed a few times a year during that time.

In recent years, however, my wife’s pattern of decline has dramatically changed to that of a slow but steady downward spiral.  She now exhibits incremental declines in multiple areas over many months before she plateaus.  And plateaus only last a few weeks now before a new slow but steady decline begins.  With multiple declines now coming so quickly, our “new normal” is constantly changing.   But since there is absolutely nothing I can do about what is happening, my attitude has remained, “It is what it is.”   

Once again, it is important for health care workers to prepare caregivers for the possibility of new patterns.  Caregivers need to know that loved ones living with AD will eventually become more and more dependent on others for their daily living activities.  And caregivers need to understand that once a new decline occurs, their loved one with AD will most likely never again regain that functioning.

When I placed my wife in her ALF, I knew it was the right decision for her as well as for me.  She happily engages in her many daily activities, and she is in a safe and secure environment.  She looks healthier, possibly due to her daily socialization and exercise, among other reasons.  But six months after her ALF placement, I suffered through a short bout of severe depression when my wife started to forget my name and I learned that she approached and kissed another man thinking he was me.  When I realized that our “spousal window” was starting to close ... that period of time when my wife knows me as her husband ... that reality was very difficult to accept. 

It’s not that I was in denial.  I wasn’t.  It’s not that I hadn’t known that this would eventually happen.  I knew.  However, it was still very difficult to accept that my wife’s latest decline had brought that eventuality closer.  Fortunately, after a very difficult emotional week, I snapped out of my depression.   I accepted that our new normal was again rapidly changing, and in less time than I had expected my wife will soon forget who I am.  There was absolutely nothing I could do.  It is what it is. 

Caregivers can deal better with these “new normal” periods if they remember to take better care of themselves.  Being a caregiver and advocate for a loved one is incredibly stressful.  It is a very bumpy ride.  Social workers and others who work with AD caregivers must counsel them not only to accept what they cannot change for their loved ones, but also to accept the need to maintain their own health.  Remind them that daily exercise, a good night’s sleep, a healthy diet, involvement in hobbies and activities, and socializing with friends ... common “remedies” for stress ... may very well be more difficult now.  However, these remedies for their own stress are still important and should be adapted to meet their current needs so they stay mentally, physically, and emotionally fit.  Needless to say, caregivers should also be counseled into attending a good support group with others who are in similar positions.   I know from experience how attending good weekly support group meetings can go a long way towards reducing caregiver stress.

Caregivers cannot properly care for their loved ones, nor be an advocate for the care of their loved ones who are in ALFs or nursing homes, if they do not take care of themselves first.  This is an important reality that health care professionals may have to discuss with caregivers many times.  But caregivers must find a way to accept this reality ... it is what it is.

Published in McKnight's Long-Term Care News.  May 19, 2014.  Access online only at www.McKnights.com/alzheimers/caregiving/the/new/normal/article/347490.