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      Losing a mother or father is a pivotal and life-changing event in most people’s lives.  When we lose a parent as a child it shapes our development in a number of ways and when it happens at a young age, often changes the way we view the world.  When we are adults and we lose one or both parents, most of us still experience intense emotions, regardless of the age of our parents at death.  Naturally the type of relationship we had with the parent has an impact on the level of intensity and whether or not we still have personal issues to work through that were never resolved about the relationship.  Many feel “orphaned”, in spite of being mature adults and often find a lack of understanding about this feeling from others (See Alexander Levy’s The Orphaned Adult).

     When a parent suffers from dementia we experience the loss while he or she is still with us in body. The sense of being “orphaned” becomes familiar to us, though our parent is still alive.   We find ourselves searching our parent’s face, voice and comments for a shred of something that used to be there.  At times we are able to hear a tidbit or see an expression that comforts us and reminds us of the past.  Often though, we are stunned anew, as though just realizing that the mother or father we used to know is mostly somewhere else. We are forced to feel the sharp smack of loss repeatedly.  A look, a word, a tantrum, an anxiety attack during what began as a pleasant visit with mother or father before the winds swiftly changed with no warning, sends us crashing back into reality.

     We stride into the elevator at the facility, laden with offerings that are also props to help us get through the visit we hope will be appreciated and pleasant for us and for our parent.   Armed with cookies, candy, or a new sweater,  we gird ourselves for the expected and the unexpected. We may be greeted with enthusiasm at first. if the parent is still able to recognize people.  My husband’s mother, tending to be a bit of a drama queen, will usually shriek loudly with delight on first glimpse of us. Sometimes she says, “Oh God, I thought you were dead.  I haven’t seen you in so long”, though our previous visit was probably only a couple of days earlier.  Sometimes the wires get crossed and the words come out all jumbled, interspersed with her screams of pleasure, or she begins to cry. I watch my husband’s smile start to fade and see his body tighten up. 

     When we visit with my mother-in-law, we  present our offerings, usually met with more extreme exclamations and then we settle in for a chat.  If we are lucky we find a topic that holds her interest a little. Mostly, we just listen to her ramble, complain, or make loud observations about the other residents. Many of these folks are out of it enough so that they don’t seem to notice.  Some wander back and forth, pausing to thrust their faces into ours and smiling, but not saying anything. Others shriek or curse.   A few are introduced anew at every visit and they extend their hands in greeting, telling us they are pleased to meet us. 

     The conversations with my mother-in-law begin harmlessly enough, but soon the emotional lability shows itself and tears are shed, along with loud moans and laments.  Sometimes there is enough insight so that my mother-in-law knows she is “throwing a fit”, as she calls it but she says she doesn’t know why and can’t stop herself. We do our best to address her concerns and to calm her.  If we are lucky she provides a running commentary on the other residents, usually pointing out with disdain the things she observes, but not always realizing that all of the other residents there also have some form or degree of dementia.  At every visit, she shares with us that one woman is getting ready to leave the facility and go back to another area of the country because she is tired of having people tell her what to do.  My mother-in-law relies on this woman’s help (often to the concern of the staff) and calls her an angel, asking us for pen and paper to write down the forwarding address of her friend so she can correspond with her when she moves out. We don’t bother to remind her that she doesn’t remember words or numbers long enough to be able to write them down.   It’s doubtful that the friend is going anywhere, but we aren’t sure of that.  

     My mother-in-law has flashes of sharpness and memories of the past that fly past the radar of her dementia and surprise us.  She will tell an amusing anecdote about something that happened when my husband and his brother were youngsters. In the next breath she won’t remember how old she is, thinks she has three different rooms to sleep in, doesn’t remember where we live or who our children are, and thinks that her women caregivers are men. She says she doesn’t want them being friendly to her, asking her questions or trying to get her involved in activities, because “she has no interest in them sexually.” Last week she looked at some photos I had brought and she thought one of her sisters who is still very much alive, had died a long time ago.

       The other day, she could not remember her deceased husband’s name and thought she had five previous husbands.  However, when reminded of the facts (gently) she proceeded to talk about the last months of her late husband’s life and how he had made the decision not to continue with dialysis, though he knew he would soon die.  My husband was stunned as he had previously been told that his father was too weak to continue with the dialysis and not that stopping had been his father’s choice.  His mother seemed quite articulate in relating this and even demonstrated excellent awareness when she apologized that she might have been upsetting her son with this information. He reassured her. Then in the next breath, she reverted to a jumble of gibberish and became agitated because one of the women residents stopped to chat with us and was perceived as interloping on the  time with us.

     Shortly thereafter, we needed to leave for home.  When we got into the car, my husband looked pale and we sat in silence.  I understood.  Every time he thinks his mother is doing “ok” or demonstrates some understanding or a level of reasonable function, we get the ice water shock of reality thrown in our faces.

     It’s not that we are deluding ourselves about my mother-in-law’s mental/cognitive status, or that you are doing that regarding your own parent with dementia.   We may believe we have come to terms with the situation, and, for the most part, we have.  We may have found a “comfortable” routine that enables us to visit, find topics to chat about and we do our best to offer our support.   We  make decisions that need to be made, but when the chips are down and we sit in a moment of quiet, the feelings of loss come rushing back at us.   

     I think the trick for those of us going through this is to find  a way to not feel too drained and in too much emotional turmoil after our visits, so we can get on with our lives and get back to the things we want and need to do. Sometimes we get an attack of guilty conscience when we skip a bunch of days and realize we haven’t visited in quite a while.  We know my mother-in-law is well cared for, though no facility is perfect, but we have witnessed a level of care above and beyond our expectations.  We have noticed lately that it seems to make little difference if we visit every couple of days, or if we stretch out visits and go every four or five days.  That might sound awful to some of you, but we are also noticing more and more that we need time to recover from the visits.  It is pretty hard to be cheerful and to find small ways to make this shared time enjoyable for my husband’s mother if our dread and discomfort are obvious.  It boils down once more to the rule of taking care of yourself when you must be caregivers for others.

     Many years ago, in 1994 to be exact, I saved a copy of an article someone gave me, called “My World Now” about notes found by a son in his mother’s nursing home room after her death. The article was in Newsweek and the woman who had written the notes and who died that year,  was Anna Mae Halgrim Seaver.  The article was very touching, but also made me quite sad, though it was years before my own mother began her slide into cognitive loss and physical decline.  I never forgot the article and still have it.

     Ana Mae Halgrim said, “Am I invisible?  Have I lost my right to respect and dignity? ”  She spoke in her article about trying to make her feelings known to her staff of caregivers but that she was then labeled “crochety”.    She mentioned the loss of privacy and the fact that she needed to be treated like a human being.    Obviously, Ms Halgrim Seaver still had a functioning mind, though her health was not good, but her wisdom has stayed with me all these years.

     When we return from a visit with my mother-in -law, of course we need to acknowledge our feelings of loss, sadness and our fears about our own future. We need to deal with these feelings, rather than ignoring them.  I think  it is also quite important for us to honor our elders and to model healthy choices for our kids by living our  own lives as much as possible.  I am sure my husband’s mother wanted that for us in the days before she became so needy and self-focused.   Sometimes she still demonstrates that concern for us, though it may become confused with other emotions.  I know that my own mother continued to care and to worry about me and my sister until her very last days.  

     When we do commit to spending time with our elders and particularly those with dementia, we mustn’t forget that they are still worthy of respect and dignity. We don’t always understand or at times even have a clue about what is really going on inside of their heads, but there is a person in there who will one day be gone forever. Let’s not forget about ourselves, but let’s not forget that fact either.