HOW FORTUNATE! 

            We have been managing the long-term decline from Alzheimer’s for nearly 15 years now.  That has been difficult for us both.  Still there are many fortunate aspects that reduce the difficulties of those years.  Maybe there will be another occasion to revisit some of the difficulties of these last years.  But, for now, I want to consider how we have been fortunate.   I have talked with many other spouses and others who have managed an Alzheimer’s patient.   And I  been influenced by observations of many others in the same facility as Beverly.

Many of the problems we had (such as her anger) were modest and less frequent than many others have experienced.  I was never in danger of being hurt by her, even though she became very angry a few times.   We had wandering issues  several times, but only two that were scary.

 There is a related issue, one which is the most important.  Beverly has maintained the same personality through all of this.  In the most recent times, her personality is apparent in limited spells because of her fatigue, which leaves her half asleep a great deal.  When awake, her predominant state prevails in the moment, even now according to reports from those who care for her.  That is, she continues to have happiness (even joy), warmth and friendliness, desire to help and trying to be helpful to those she has contact with.  She was and is a very positive person; she has great social skills that she uses to make others happy and functional.  All of that has remained from the beginning until now; that is fortunate in comparison to what is often reported.  

 And music brings out her greatest happiness; she was a natural entertainer with her sociality and with her music.  She has great enjoyment with music of whatever kind she experiences.  That has not changed.  Earlier in her time, when functionality was higher than now, it was amazing to find out how well all the visiting musicians knew her; they would comment on her. She was always at performances in the facility; she made complex rhythms with their music, tapping with her hands; and she always sang along, often creating great harmonies.  She still sings along and taps rhythms.

 Often (in past days) she and a staff member at the front desk often threw their own little party, which consisted of listening to a favorite few recordings (very lively, of course) with Beverly and anyone around dancing and just having great fun.  There were always others coming in to enjoy the fun and the result was a happier mood for many.

And her personality has resulted in many benefits for us both.  Staff and other residents and family member love her and want to be with her, having fun, enjoying music, and more.  Some staff have strong connections to her as she brings fun and joy to her environment.  Everyone seems to know her, a reality that has always been true.  But now she gets attention from many, just as she did before the disease came.  And it helps me in many ways.  I know she has been and is mostly happy in her present circumstances.  She is still happy to see or hear me.  Most of all, I know that she is happy without me.  I know that she gets excellent care.  I know that there will be phone calls with her there because she creates a positive environment that results in others helping her.

I greatly appreciate many who are directly involved in her care.  Dr. Fehlauer is an extraordinary physician, an expert on managing the symptoms of those with dementia; reportedly he is the best in this field of practice.  (Note:  There are no effective treatments for Alzheimer’s, only control of depression, anxiety, anger, poor sleep, etc.). And Dr. Fehlauer has been great at addressing other medical issues for Beverly, such as the pulmonary embolism and the seizures.  He is very concerned about her health and well-being; and he is always consultative with me.  The Nurses are competent and caring (see previous blog).  The caregivers (CNAs) are also capable, caring, etc. (previous blog too).  There are many special people in her life at the facility (previous blogs about some of them).  And the administrative staff (Director of Nursing, Social Worker, and Administrator) have been exceptional; special thanks for policies and efforts that have kept Covid completely away from the residents.

And I am fortunate that the life I had could continue with has flexibility, time, and enough financial resources to survive.  I started jazz piano lessons about two years ago.  That was a response to advice from others to “get a life.”  I have time to play the keyboard and sing, both to have fun and to learn new techniques and new songs.  I play for a few hours nearly every day; there is great improvement from practice and it is gratifying.   The recommendation to “get a life” is very prominent in Pauline Boss’s excellent book Loving Someone Who Has Dementia.  Her guidelines for a caregiver include:  Find Meaning, Broaden Your Identity, and Take the Time to Mind Yourself.  All of these are fulfilled for me by the music.  Performance for others is occasional, but when someone gets Beverly on the phone with me, I try to play and sing new songs for her.  My ambition is to perform in facilities where people generally do not get out and need entertainment.  We will see if I can be good enough as a performer.

And I hike or walk the dog, usually twice each day.  Hiking is wonderful most days of the week as the natural world is close and I can quickly be on a trail. The Japanese have the term shinrin-yoku, which literally translates to “forest bathing;” they consider time in the woods as medicine.  And being in the woods is medicine for me, as is going for a walk, especially when I am tired or feeling down.  All is improved by having a dog with me and off leash whenever allowed. 

The blog is a psychologically positive preoccupation some of the time; time on the blog comes and goes.  Anything I write simmers for days or weeks and it is always difficult to be finally satisfied with anything.  The practice of writing something regularly is good for the mind and for one’s emotional state.  I have written notes about events related to caregiving for several years, primarily in the years of having Beverly in this facility. There is benefit to me of processing and clarifying what happens and of understanding my feelings.  Most of all, I am thankful that others learn about the process of dementia and what is needed from a caregiver.

It is very positive that I have strong contacts at her facility, so that I can know about events and medical difficulties and I can feel that I am being consulted for her best care.  Dr. Fehlauer is readily available and takes time to listen to me and to inform me as clearly and effectively as anyone could imagine.  The Nurses are always willing and very able to discuss important events for Beverly and to provide needed information about her functionality and medical status.

It is also fortunate that I have excellent support from family and friends.  Our children, our siblings, and many others want to know how she is doing—and how I am doing.  They provide support for many aspects of my life, and they support my need for conversation, mostly by phone.  Erik works at the house, generally in the basement and brings his baby for short visits (she is about one and a half years at the beginning of Spring,2021); she has sparkle and is genuinely excited to see me.  My other grandchildren, now all teens, all want to talk on the phone and contact  me to discuss music, flyfishing, or play JackBox games.  Nearly every week I have a guitar concert from two of them. 

All  of the sources I have read about dementia caregiving emphasize the importance of having a life not completely tied to caregiving and of considering learning activities for intellectual and emotional growth.  Also, caregivers should maintain  relationships (family, close friends) that make life worthwhile. 

While the dementia process has been long and sometimes difficult process, we have been fortunate.  Beverly is generally happy, warm, and friendly to others.  Music brings her much pleasure and she can still sing along.  The staff take great care of her and of medical issues.  I feel well connected to those important in her care.  I have survived and grown,  in some key ways.  One of them is  music, on which I have thrived with great progress.  The other is writing about  being a dementia caregiver; writing keeps me thinking and, as I hear, helps others who have or will have a similar experience.  It reaches many more than I could reach with face-to-face communication. 

I remind myself to focus on the ways in which we have been fortunate!