CONFESSIONS OF A FLAWED CAREGIVER

            I have been working at this blog for too long; it started when there were several compliments about my excellence at caring for Beverly.  So much so that I have threatened more than once to write about my flaws; here we go.

 

            No doubt an independent observer could list more flaws in my caregiving, but I’ll stick to what I know.  The flaws here are all issues that may occur for any caregiver; and they are all consequential.  Life would have been better for us both if I could have managed to avoid such flaws. At least they have all diminished as I became aware of their dysfunctionality.  Indeed, some of the specific stories go back to the earliest days in the facility, 3 years ago or more.

 

            MY IMPATIENCE.  Beverly suddenly and impulsively wants to talk to someone though I have come for lunch.  The talking goes on and on; and any intervention to get her to move on is ignored.  Finally I become impatient, which only makes the situation worse.  In some regards, dealing with someone with dementia can be compared to dealing with a young child.  Because of the illness, she depends on help as does a young child.  The caregiver shepherds the child or dementia person around for safety and comfort.  But the caregiver has a higher level of patience with the child, presumably because the child is more cooperative about being controlled.  As the child gains competence, he/she must exert against parental control as part of development.  With dementia, the process is in reverse as the competence fluctuates, deteriorates, and then is ultimately lost.  As competence begins to decline, the adult with dementia resists being told what to do and controlled, even though the help and direction is motivated by trying to serve their best interest. 

 

One day she and I went out to eat.  Upon arriving, she said she needed to visit the bathroom though that was taken care of just before we left.  And it could not be managed in a restaurant, as she needed to have a woman with her, one who could help her.  I promoted the idea that we wait until we are back at the facility.  She just kept repeating the issue over and over and I kept indicating we could wait to no avail.  Finally my patience burst. I was very upset and I was angrily packing us up to leave and she was equally upset and very irritated about the whole situation, threatening to not leave.  Miraculously our son showed up at that moment; she was so distracted by being with him that the bathroom issue went away completely.  We finished lunch, returned to her place, had pleasant conversations with staff, and there was still no demand to get to the bathroom.  It was simply lucky that our son had come. Even if he had not, it was not helpful for me to get angry; it would be better to simply pack up and leave.  With people with dementia, impatience never improves the outcome.

 

            And the occasions for impatience are many; most family caregivers describe such occasions, including their own frustration and anger.  It may involve simply getting out the door to arrive for an appointment on time.  Or changing clothes.  Or eating a meal.  Almost anything that requires them to act, to comply, or even agree, we are driven to impatience unless such cooperation is quick and direct.  So what to do?  Unfortunately the answer is simply to let it be.  As soon as your impatience starts to rise, that itself is a sign to back off.  They won’t hurry, won’t comply, won’t agree.  The harder one tries, as soon as escalation sets in, the worse things become.  It comes back to a previous blog about “Redirection/Happy Lies.”  As Dr. Fehlauer is quoted there, don’t disagree unless there is a matter of safety.  Sometimes a happy redirection can be found, thus avoiding confrontation. “Let’s go get some ice cream” may get her out the door.  Then she forgets and we go to the appointment.

 

INTOLERANCE.  Intolerance of some people in the facility.  This was an issue with residents who harmed others.  I was also intolerant of various residents who were unpleasant or disruptive people.  I avoided many of these people, was consistently not pleasant to them (not unpleasant either), and herded Beverly away from them. You, like me, may think this is appropriate, even inevitable.  But I have to contrast my feelings and behavior with many staff people, who consistently managed these disruptive residents well and without apparent bad feelings.  Indeed, Caregivers told me, “Oh, I do fine with him” and meant it.

  

My tendency was to stay away from them and try to make sure Beverly was not in contact.  I was especially upset with one male resident who had multiple angry reactions with violent behavior that caused serious injury in at least one case.  On one occasion, he was ready to attack Beverly over her picking up his coffee cup, as mentioned previously in a blog.  Yet she would go up to him, put an arm on his shoulder, even kiss him on the forehead.  My reaction was to get upset about that, trying to pull her away, etc.  Yet the staff could be very supportive toward him, never showing any negative feelings.  Surely it would be better for his behavior if he was shown consistent kindness by me and others.  Not support for violence but understanding.  That was always hard for me.  And not just with him; there were others that I could not tolerate.  

 

One of those was consistently strange; he kept his hand in the front of his pants for long periods, apparently handling his penis.  When I once saw him in the hall with pants unzipped and penis on full display, the ladies had a great laugh when I walked into dinner and announced that I had seen Jack (pseudonym) “waving his flag” in the hallway.  I am not quite sure how they understood that peculiar phrase, but they laughed and laughed.  Despite that light moment, his behavior was troublesome for me.  And getting a laugh about him did not reduce my feeling of intolerance.   

 

Another guy seemed to regularly work at aggravating people, including me.  One evening, when Beverly and I were enjoying a quiet time together, he barged right into our company and it seemed to be his pleasure to be in the way.  Beverly left to go to a nearby bathroom (this was at a time when she could manage on her own).  She went in and closed the door.  He immediately went over and opened the door to her sitting on the toilet.  I went over and quickly closed the door, then told him not to do that again.  He got right in my face with a big grin, basically challenging me to do something about it.  This was typical of his way of relating to people. While I never confronted him further, my attitude and behavior toward him was not one of acceptance.  Again, staff members could be very kind & supportive toward him.

 

            The list could go on.

 

            JEALOUSY.  For all the years I have known her, Beverly was always engaging/charming with men and with women.  However, in our long history, jealously had not arisen.  But now, in the Memory facility, I started to experience jealousy based on her behavior.  As described in previous posts, she could walk off with a man while I was there with her & at times when we were having a pleasant walk or even just going to lunch.  Other times she engaged in a prolonged interaction talking with a male resident, though you could not understand what either one was saying.  And there were several times with a lip-to-lip kiss and many more lesser kisses.  I have gotten angry on many occasions; early I would express my anger directly to her.  But that was only an aggravation of her.  So I had to learn to ignore the issue and often simply leave. There were a few occasions at dinner when she got up, went around the table and began to massage a man’s head.  A little bit of that was fine, but when it went on for 10-15 minutes, I became jealous and unhappy.  The staff seemed to agree with me that this was troubling.  Yet overall the staff response to me has been that she was simply a caring person, one who had been a Nurse nearly all of her adult life.   And they argued that this behavior was primarily about that caring. The “caring” perspective worked some of the time for me.  However, her behaviors toward men were often different than toward women.  She had always been a flirt, but before dementia she had always drawn a line and maintained control and respect for potential feelings.

 

            Now I have to tell the extreme case of how awful I was a time or two very early in our time in the facility, an example of how great my impatience could be.  Something went on that led to firing up my aggravation (I have forgotten those details, which don’t matter much.)  I confronted her, only to make her angry, with escalation by both of us.  I was so upset that I walked away to leave the facility.  On the way out, I and took a few moments to talk to the staff member at the front desk who was by then a friend to us both, especially Beverly.  I was so furious I finally told this friend very angrily (according to her recollection) that “I am not coming back. You can tell her if she wants me to come back to see her she can call me and tell me that she wants to see me again.”  Then I stormed off.  My friend then immediately called my son and told him, “This is crazy.  There is no way I would f..ing tell her that.  It does not make any sense.  She has no understanding of what is happening.”  Of course, my son immediately called me to calm me down.  And, after the anger subsided, all went back to normal.  My friend’s recent recitation of this incident made me laugh hard repeatedly.  What I dummy I was in those days!

 

            As I was told many times, she can’t help it; this is part of the change to her brain with Alzheimer’s.  Part of his process is called disinhibition, that is, reduction in our inhibitions about behavior (and thoughts too, no doubt).  I could accept that, as well as the above emphasis on her caregiving.  Still, in the earliest year or so of her time in Memory Care, my jealousy could be strong.  As our lives unfolded in that setting, it became less so.  And the jealous reaction is now minimal, reflecting adaptation to circumstances as well as acceptance of her decline in function.  And the Covid constraints have helped me understand that our lives must largely separate.  She now lives in a world that is no longer mine, a world to which she has adapted and I cannot truly be integrated into.  Indeed, as I discussed in the blog “Love and Marriage,” this is no longer functionally a marriage.  My love is still there, but those feelings are based on history and now mostly connected to my caregiving for her.

 

            MY SLOW ADAPTATION.  And that leads to the final flaw, which was my slow adaptation to this change in our lives.  As discussed in an early blog, I spent many hours in her facility, sometimes wondering how I could be in this “crazy” place as long as I was.  At the time, that all seemed right, as we were so strongly connected and she “needed me.”   Experienced staff told me I was there too much of the time, that I needed more time off.  I felt I had to be there for her. I negotiated (more than once) with a dear friend who was on the staff that I would take one day “off” every week; even doing that was hard.  That all seems silly now.  Indeed, it is better for her if I am not around a lot; she has her own life in this reality. I was certainly in the extreme range for a closely related caregiver, one of a very few who was around a great deal.  Others in similar situations had said in one form or another that it was difficult to be there. The husband of a resident told me, early in his wife’s presence there, that: “I can’t stand to be in this place.”  Still he came every day for lunch with his wife.  I would guess there is a sensible and ideal presence, somewhere between my extreme presence and that of some spouses who might only show up a few times a year, for a birthday or holiday.

 

            Indeed the need to be have a life outside of the Memory Care world is important for maintaining my mental and physical health, which will impact her care over the long run. Sanity was not aided by living too much in her world.  I saw a therapist for mild depression.  Nor was the stress of nearly living there healthy for heart and brain.  So Covid has helped me move on.  After Covid, there will not be a return to the previous involvement level.  I will continue to be her primary caregiver—being there some of the time, engaged in knowing about her functioning and medical issues, assuring her that I love her.

 

The flaws I described are greatly diminished (or gone).  They may all seem to be natural reactions, but these were nonetheless flaws in the care I was able to give her.  And hopefully it is useful to others to know what these flaws are, as they are likely to be common.  And, of course, understanding how we can react and why we do so can lead us to modulate our emotions and behavior, with resulting improved functionality.