Loving the Person Who Was & Who Is

# 3.  The Marathon of Caregiving:  

Loving the Person Who Was & Who Is

            My dementia caregiving began before the “diagnosis;” which was more than 12 years ago.  When will it end?  Many more years!  This is certainly a long-term process.  Some have called it a “marathon,” and not a “dash.”  That is certainly true.

  There is this mental puzzle?  I remember who was she before, but who is she now and in what ways is she still the same person she was?  Who will she be as it ends?  

  We love and care for the person we are close to, but that is no longer easy. This caregiving goes on for years and our care for this person (whether spouse, parent, child, or friend) is very demanding.  This person is never getting better, always getting worse, a person less and less like the person we knew before.

             Our love for them was based on who they were at the time before the dementia and now they have become someone very different.  There is definitely a regression to something like childhood, though this child will not grow up.  They live in the moment and sometimes in the past; emotions flow quickly and quirkily, sometimes uncontrollably.  Clearly memory loss impacts these changes, but there is a confusing pattern of loss.  Personalities change too, for some more than others.   Yet we love them still.  

  Fortunately there are many happy moments.  Certainly she is happy to see me come to be with her.  There are stresses in being a caregiver, but there are clearly many rewards.  And those rewards come most often to me (and others, I hope) from being upbeat with them.  And we get glimpses of the person we love.  Laughs and silliness are always important.  We can still have fun together

             The situation is ambiguous, as Pauline Boss has written about in Ambiguous Loss and Loving Someone Who Has Dementia.  This is not the person I knew and loved all these years, yet in some ways it is that person.  The person who was is the person we most love; we would like to have them back that way.  But we have someone different; and for some, that person is very different.  There are many times that another caregiver has said to me, “He/she was never this way before.”  And we grieve the loss, but this is a grief that continues for years.

            “You have to put the person you knew behind you and make a relationship with the person who is in front of you”—Prye Tragle, a caregiver in Toronto.

            With input from others, I have thought about that quotation a fair amount.  On the one hand, it rings true that we have to deal with the person who is here.   Nonetheless we cannot cancel our memories of who this person was, our past relationship, and how that history is part of who we both are.  Our relationship has a remembered history for us.  Yes, let us deal with the person in front of us.  Yet we and our loved ones with dementia have a remembered life together and even they still remember.

            Beverly has changed less than most; she is happy more of the time than most others; and she is friendly.  But I don’t know who she really is; don’t know what she is thinking.  She still knows who I am, but she will ask, even when I am beside her holding her hand, “Where is David?”  

So for most patients with this disease there is some of the same person, at least until very late in the process.  Yet there is much that has changed; there is much for the caregiver to manage—the emotions, the various losses of boundaries and reduced politeness/manners; some topics for future blogs.  Little by little, she has become someone else.  She can demand for me, yelling loudly my name when I am not there. And she can reject me completely when I am there, turning away and not talking to me.  But usually she is happy.  All of this can happen in normal relationships, but with dementia these reactions are not justifiable by normal calculations and the reactions are more extreme than one would expect given circumstances.

            Sadness happens.  She dwells on people such as her Mother who died long ago, wanting to “go see her.”  And on her close cousin Janet who died several years ago, but she does not remember that death either.  Nearly every day at lunch she will raise the issue of her Mother, typically wanting to get some food to her Mother.  But I no longer tell her that her Mother died, which was many years ago.  I learned the hard way what the experts know, that telling her will only create a greater sadness for her.  And that there will be no memory of what I told her about her Mother being gone.  This process is sad for me.

            This caregiving is often stressful.  Temper can erupt, often unpredictably.  A sure way to create her anger is to disagree with any issue or to interfere with what she is doing.  Consider her desire to take food to her Mom.  I must talk about how we will go see her Mom , and I tell her that her Mom is many, many miles away.  I tell her that it is too far to take this plate of food and that we will get food for her Mom when we go to visit.  None of that is true, of course.  Such untruths are called “redirection.”  Of course, I could directly state the obvious truth:  “No, we can’t go visit your Mom” or “We can’t give her food.”  Such answers will move toward unpleasantness and, if she reiterated her desire to take food and I said again “We won’t”, there would be some anger from he.

            I don’t know how many times I have made her angry by trying to interrupt her continuing attention to a male resident.  For example, at our little dinner group, she would get up, go over to one of the male resident and begin to rub the top of his head,  continuing for a long period even 10-15 minutes.  Sitting next to her empty chair and plate of food, I would finally say (fairly nicely), “Honey, can you just come over here and eat your dinner?”  That gets me in great trouble and I often end up simply leaving to go home.

            As seems obvious, jealousy is one of my reactions;  I consider that to be a failing on my part.  And it is stressful.  There are many instances of her simply leaving me standing while she devotes a long spell to a male resident, engaging in physical touching, intimate conversation, etc.  This would be acceptable except if I try to get her to move on, the interaction will escalate into her anger.  Of course, staff have reminded me that she “does not know what she is doing” and the unique reason she has of  “doing her work,” namely her nursing work.  But, in part, my behavior is also driven by letting the men know that she and I belong to each other.  Happily my jealousy has provided less of a problem more recently.

  Anger is not uncommon with many dementia patients.  I have seen many angry outbursts by residents, mostly males, resulting in physical attacks.  Occasionally two women will fight too, but it is unusual and typically no one is hurt.  One resident (call him Rick). seemed to have a dislike of women and made various insults of women residents.  Another (call him Bob) consistently defended women.  An insult towards a female resident by Rick in front of Bob resulted in Bob becoming angry.  The escalating confrontation became a fist fight.  And a different man (call him Zeke) was angry and out of his wheel chair ready to hit a male family member who seemed too friendly with a female staff member that Zeke had decided was his girlfriend. Of course, Zeke had all of this wrong; the man was not flirting with her and she had no interest in Zeke.  Before he could attack the family member, there was a calming intervention.  The amazing skills of staff at calming situations will be discussed more later.  In many situations here, I (as other family members) need to attend to the possibilities, thus being careful about what we do and say to resident.  (More on anger in a subsequent entry.)

             Beverly and I both have the good fortune of knowing how to sing and play music.  My new hobby is taking jazz piano lessons and that has greatly improved my state of mind.  There is much interesting research on the power of music for dementia patients; a later blog too. 

She loves music from a range of genres.  She is nearly always participatory when there is a program at the facility, especially with live musicians.  And we can do that together as I love music too.  She played (and can still play) wonderful rock and roll and other styles by ear. 

            We still have many good times together.  Meals are generally happy.  I help her eat, but that has become so routine that it is pleasant for us both.  Early on in the facility, she would not let me, only someone else, help her eat.  (More on the “third party advantage” later).  We have a pleasant time together most evenings.  When she is in bed, she is typically calm and content and there may be some interaction.  I play music, lie down with her, and she goes to sleep 

            It is difficult for me to find the right balance in my life.  The daily hours with her leave me with limited time for other social activities.  This will have to change.  But life in the facility is on the edge in various ways, certainly not normal.  It is stressful to manage her and to deal with others there.  I have anxiety about where we are and where this is going.  And I don’t yet know what life will be like when she does not know me any more.  This is a marathon already and there will be many more years.  Still I find happiness every day more than not.  But balance is not easy.

             The other day, while driving, I heard the song, “The Things We Do for Love.”  For once, I listened to some of the words.  When the singer said, “Like walking in the rain,” I was struck with this thought:  walking in the rain is remarkably NOT difficult.  By contrast, our reality is:  Being a long term dementia caretaker is clearly “A Thing We Do For Love.” 

            What can I suggest: 

First, brace yourself for the long haul as this often goes on for years with many of these patients. 

 Second, enjoy your times with your loved one.  They do get sad, angry, and otherwise difficult.  Find and make happen the good times, and there will more good times than not.  And that does depend more than you think on you.   You can be silly, make fun times, sing songs together even if the singing is not great.  You can even overcome unhappiness with humor and a laugh. 

 Third, note the obvious, that if they don’t “remember” about bad events (deaths, illness, divorce, job loss, and whatever), do NOT tell them.  Sadness comes when they hear about these, but they do not remember for long and thus can become sad again and again.  

 Fourth, make friends with the staff and with other caregivers.  You can get support and laughs with them.  They will appreciate warmth and a sense of humor from you.

 Fifth, don’t forget your “psychological family;” they will be needed to manage the long term.  Relatives, good friends, religious leaders can be with you to help with the difficult times.

 Finally, remember yourself every day; find something away from your loved one that is fulfilling and happy for you.  Take up a new hobby, regenerate an old happy, learn a language, start serious meditating.  You can be the best caregiver if you are functioning well and are an “upbeat” person for your loved one.

 Have a great voyage; it is indeed all about the voyage, not the ending.