An Ongoing Saga – this time, dementia

A year or so after my father died in 1994, my mother took up with a man whose wife had been her bosom pal prior to her death not long after my father’s.  My mother and her partner have been together in Portland, OR ever since.  Until two and a half years ago, they remained in their own homes (neither wanted to give up her/his houseful of memories, belongings, habits). 

A few years before they moved in together, we began to notice his forgetfulness, his difficulties doing some simple things.  He had a few minor traffic accidents, which convinced the two of them—with some additional encouragement from us, their children—that he should give up driving at night.  Gradually, they both did.  There was nothing too dramatic—just predictable increases in vulnerability as the elders progressed through their 80s (more aches and pains, more frequent falls, worsening arthritis in my mother’s case, worsening memory in his). 

Meanwhile, my husband’s mother (in her 90s) was in comparable condition, living in her own home, in a suburb of New York City.  Her arthritis, already causing her more problems than my mother’s, was worsening.  She had to move everything she needed down to chest level, because she could not raise her arms.  We convinced her to get a stair lift, so she could get up to her bedroom with less pain; but she was becoming less and less mobile, spending more and more time on her couch in the living room.  Her daughter urged her repeatedly to sell her house and move into a retirement home, to no avail.  But that’s another story.

Meanwhile, until 2009, my husband and I lived in Indonesia—too far away to be of help to either parent.  Eventually, we decided we needed to move back to the US, to be more available.  Deciding where to live was difficult, as our families were scattered all over the country, with those needing the most help on opposite coasts.  My husband preferred the East (where most of his family lived); I preferred the West (where most of mine lived ).  In the end, we settled on a compromise:   We’d move to the East, with the recognition that I would simply travel some three times a year to the West Coast (where my daughter and grandchildren also live).  I figured I would need to be there 1/4 to 1/3 of the time.  Not ideal, but…workable.

We came back to the US in the summer of 2009, about the time my mother’s partner was diagnosed with early stage dementia.  We (the adult children and grandchildren) had already begun to worry seriously.  He was gradually less and less able to take care of his own cooking, his own house, and we saw that my mother was taking up the slack.  A woman in her mid-80s taking care of two fairly large houses, doing the errands for herself and her partner, making the half hour drive to and from his house regularly and much more often than he…not a solution likely to last.

By 2010, he had begun having TIAs (Transient Ischemic Attacks, or mini-strokes);  and in the fall of 2010, he had a more major one that hospitalized him and rendered him initially unable to speak.    At that point, something had to be done.  My mother reiterated her preference for having him move in with her; and we (my mother and all five of us, their children) made that decision for him.  He was simply no longer able to manage on his own—plus he would need speech and physical therapy, many doctor’s appointments (requiring the related driving to and fro), someone sensible to monitor his meds.  We all (including his three daughters) recognized our elders’ love for each other and certainly wanted them to be able to remain together.  But we were all worried about straining my mother’s emotional and physical resources beyond the limit.  

Thankfully his daughters realized this dilemma and were as cooperative and helpful as it’s possible to be.  They agreed immediately that Mom would need additional paid help; and set about finding it for her and arranging for it to be paid from his resources.  In fact, they wanted to provide more help than she actually wanted—she didn’t like the constraints on her freedom of movement that came with the formal health care providers available [someone had to be there to receive them and to sign their time sheets when they left].  But she really had little choice; she was too old and weak herself to take on all the caretaking work his condition required.  Meals on Wheels entered the scene for lunch every day (another solution that was needed, but carries with it some serious disadvantages—eating pre-prepared meals from black, plastic mini-trays, no matter how appreciated, is hardly aesthetic and inevitably reduces one’s pleasure in eating).

There were advantages to this arrangement though.  My mother no longer had to maintain two houses or cook routinely, and she no longer had to drive back and forth across town so regularly (a real plus, since we all also worried about her fading driving ability).   Portland is not a town in which relying on public transport is an easy alternative.  Now, in 2012 (at age 88), she is investigating the options for handicap pickups and learning about using taxis.  She still drives, but has reduced it to the bare minimum.

I have been able to go three times a year and stay about a month each time.  In the beginning, the work on such visits was incessant, as we tried to do as many household projects as we could in the time available.  I would fall into bed every night totally exhausted, aching from unaccustomed levels of physical activity.  My son was living with her at the time, and helped her routinely insofar as his own work needs allowed, but she had not yet decided to hire any significant extra help.  She had gradually been able to do less and less around her own house, and there was quite a backlog of things that needed doing.  My daughter and my brother came from time to time, helping with these needs as well. 

Little by little we made sufficient progress, aided also by the ongoing paid help, so that now when I visit, most of my time is spent driving—catching up on errands that need doing—or helping her with bills, filing, and computer/phone issues (among her least favorite tasks).  Her hands have difficulty dealing with paper; the expectation that she respond quickly on the phone to unanticipated questions can unsettle her; answering menu-driven questions annoys her.

When my daughter comes, she cleans (she is not satisfied with the cleaning that the helpers provide).  My brother paints and fixes things.   My son has left (with mixed emotions), returning to Indonesia to pursue his life’s direction.  A handyman now normally comes once a week to do many of the things my son had done (caring for the yard, doing small house repairs, carrying heavy loads).  My pseudo-step-sisters also come and help out from time to time—keeping up their father’s house, doing whatever needs doing at both places. Now, the weekly hired help typically comes to 12 hours of nursing and domestic help, and 8 hours of house maintenance, gardening and ‘heavy lifting’ type help.

Although my mother’s partner’s speech improved somewhat, with the benefit of speech therapy in late 2010, it soon began deteriorating again and now has deteriorated further each time I visit.  His mind cannot hold a recent thought long enough to spit it out, even were his brain able to link his thoughts and his tongue reliably.   He is a kind man by nature, and remains so.  He is charmingly chivalrous of my mother, even now opening doors for her (ever so slowly!), taking her arm, helping her up.  He worries about us, though he is unable really to help (can’t even go get the milk, or put away a cereal box).  He sometimes mixes up the top and bottom of his pajamas.  He seems genuinely to be child-like—this man who was a successful, Harvard-educated lawyer, articulate and highly intelligent.  In the early years of his and my mother’s relationship, we were sometimes irritated by his insistence on his own views (referring, at such moments, to him privately as a ‘control freak’).  We disliked his political views (so far to the right of our own)—but all that has vanished with his dementia.  He accepts whatever comes, usually with what seems to be equanimity.  He still listens—all day, when he’s not asleep—to Foxx News, but we’re not sure he processes anything that is said.

He gets frustrated sometimes about his inability to say what is in his mind—as I imagine anyone would!  Occasionally he has hallucinations (probably coming from his drugs).  He can understand that this happens, even though the hallucinations seem real to him.  Once in a while he has moments of paranoia, wondering for instance if we daughters are ‘pulling a fast one’; or questioning if my mother is really herself.  Once he touched her cheek and said that the woman he touched had softer cheeks than my mother did, that she probably wasn’t real.  These moments are rare, but we worry that they could increase.

For my mother, she has, in an important way, lost the man she fell in love with. She seems to accept what remains of him, with love. She appreciates his concern about her and about us, his warmth, his existence. I can see that she tries not to dwell on what she’s lost.

There are funny moments too.  A month or so ago, when his doctor asked him who I was (after hearing of his hallucinations and paranoia), he said, “She’s a well-known….uh…ummm [he couldn’t recall or speak my profession]…and a servant”.  I do play the servant role in my mother’s home.  Other times he tells rather outlandish stories that bear no relation to the facts, or he confuses things in amusing ways—he, who was once incredibly geographically aware, has to be reminded where Rome is or Papua New Guinea, where he spent part of World War II.  We allow ourselves the luxury to laugh privately about these occurrences; it helps us cope with the sad reality.

For my mother, her mind is not as reliable as it was when she was younger, but she is still quite intellectually competent, alert.  We thought she was ‘losing it’ a few years ago, but the challenge of dealing with her partner’s deterioration seems to have sharpened her own intellect again.  Her body betrays her routinely though—she walks (and sometimes breathes) with difficulty, wakes in considerable arthritic pain, her hands have little strength and refuse to obey her mind’s commands.  She has changed her expectations: “If I only drop three things in a day, I’m proud of myself.”  She falls easily, is wobbly.

Amazing to me, throughout all these difficulties, her optimism and good humour shine through.  Her home is lively, full of activity (indeed, quite a bit more activity than my own!).  She accepts the difficulties with patience, laughter, a kind and giving heart.

There is no routine for those of us who come to help; and to some extent, our visits interrupt the routines that my mother and her partner develop.  We know that routine is helpful to those with dementia…We don’t know what would be best, though my mother assures me she wants me to come.   Each time I visit, I try to assess the situation (as do we all).  Each time, I conclude, ‘It’s ok now; it could change at any moment.’  No solutions are ideal; none is permanent. We simply have to ‘go with flow’.  And enjoy the good moments.  Seeing this good man’s deterioration makes me appreciate the time I have with my mother that much more.  She remains herself; I can still enjoy her liveliness, her positive attitude, her sense of humour; and I can appreciate her amazing ability to adapt graciously on a day to day basis to the changing reality in which she finds herself. When my turn comes, if it does in this way, I hope that I can be like her.