SHE’S LEAVING HOME

“SHE’S LEAVING HOME” “We gave her most of our lives.”  (The Beatles)

            The dementia process creates many difficult issues; one of the more puzzling and troubling matters (for the spouse) is when to end living together.  This was an emotional time for us, with results that continue to reverberate with sadness.  Fifty years (plus) of being together and then, dramatically, we were permanently separated.  Sadness blossoms—and continues.  We both have endured the pain of this significant change.

            This is a decision that creeps up slowly for many; for me, I pondered what to do for some months and then was suddenly forced into acting.  As described in an early blog, Beverly had days of being angry and difficult, then she was “lost” out of the house for two hours in the middle of the night, then she had a terrible fall resulting in hospitalization.  Many friends and relatives advised me that this was the time to move into an appropriate care facility, going from the hospital to rehabilitation, and then to “memory care.”  And they were right!  This seems simple in retrospect, but it was definitely not simple—for me or for most.  But many folks with a loved one with dementia have a long period of indecision.  There is an ambiguity, but the decision is very emotional.  What would be the basis of choice?

            At least one prominent excellent source (Devi Gayatri; The Spectrum of Hope) argued strongly for keeping the loved one with dementia at home.  We all want to “stay home” for now and through the rest of our lives.  Dementia patients more so.  Home is where we have our peace and comfort, where all is familiar and where we have the most contact with those we love.  And dementia patients are typically very unhappy with change, a point to be emphasized in relation to various decisions and everyday interactions.  Throughout the dementia process, change is a source of unhappiness and even anger for them!  And moving from home to an institution is a massive change.  We managed the change better than most, but it was distressing.  And much time passed before I understood how much it impacted her with sadness and anxiety.

            There are many aspects that drive us to NOT move a dementia person to an institution.  Among the most obvious is denial, the denial by patient and caregiver that the dementia is serious and continuing to get worse.  Our denial motivated us to investigate and try various interventions to slow or stop the dementia process—from adopting dietary/supplement interventions to checking out every active research study we could find.  And denial also played a role in my reluctance to look at possible institutions and to get on a waiting list as needed.

            Further, the positive satisfactions of the caregiver role can lead us to avoid thinking about an institution.  We caregivers now have a demanding, but fulfilling, role in managing the various aspects of this role—taking care of all household functions (cooking, cleaning, laundry, etc.); travel; going out to eat and shop with them; generally managing our loved one.  I was proud to be the successful caregiver and knew it to be part of an essential role of the loving spouse; others complimented me for that.  We caregivers often want continue our heroic role.

            And let’s not forget the simple factor of inertia; as long as it is sort of working, we continue as we are.  

And, significantly, there are often promises to the loved one that we would never put them in a facility, as was true for us.

            And, most of all, financial factors operate for most of us.  A quality facility will likely be very expensive, as it is for us.  In Utah, the cost for a quality full-time facility providing room, meals, adequate nursing care and activities,  and memory care (as these facilities are called) can range up to $10,000 per month or more.  Retirement places and assisted living facilities will rightfully not accept a person with mid-level to advanced dementia.  It is not very workable to move into a retirement facility together, an option we explored.  The memory care institution should be a separate secure (locked) part of any facility.  Considerations for finding a quality place will be the topic of the next blog.

            These various factors make many to wait too long.  Several caregivers have told me that they wished they had made the move sooner.

            In any case, what would lead families to make this move?  Most central (and obvious) are the elements of the dementia patient’s functioning.  Behavioral issues are typically the most critical from early to mid-level Alzherimer’s.  Arthur Kleinman, in his remarkable book The Soul of Care, describes several striking public and private outbursts of anger by his wife with Alzheimer’s; each outburst provided adequate justification for him to violate his promise to her that he would never put her in an institution.  So he simply could no longer manage to live in their home with her and could not take out to other activities (like restaurants).  So he moved her into a carefully selected institution. A great friend, whose wife is in the same facility as Beverly, struggled with the reality that she cried continuously most of the day every day.  And this resolved with the right medical intervention, but this needed to be in an institution where the physician could monitor the impact of the necessary drugs.

Beverly rarely caused any public issues; her common inappropriate behavior was generally being too friendly, even intimate, interacting with a total stranger.  Typical was going to another table in a restaurant to talk somewhat intimately to, and even touch, someone (male or female), that she had never seen before.  On various occasions, a restaurant server we just met at an out of town meal was invited to come to Salt Lake City and stay with us.  These incidents were just “sweet” and not embarrassing for me.  Yet at home there were various moments of anger, even paranoia, that occasionally became dangerous to her; some were discussed in earlier blogs.  Only during that last week, with events mentioned above, did the behavior become consistent enough to justify taking her to an institution.

            Then there are the complexities of biological necessities—eating, drinking, urinating, and defecating.  And the other essential activities--bathing, washing hands, getting dressed, seeing, even walking safely—that will eventually be troubling.  All of these inevitably fail with dementia.  None of these were yet troubling for us at home, other than her difficulty finding the bathroom and sometimes going out in the backyard to “relieve” herself.   Only after 3 years or so in the institution did diapering become necessary.  For someone (like Kleinman), it is no problem to have a hired person in the home to manage these difficulties.  Of course, 24 hour care for toileting and all these issues is expensive and is disruptive to the household.  For many who are living with, and caregiving for a dementia patient, these issues increasingly demand extra help, whether a paid support person in the home or moving the patient into a care facility.

            And there is ultimately the issue of the social and psychological state of the caregiver.   Kleinman discusses his despair and exhaustion as his wife progressed into having these extremely angry outbursts, including a prolonged tantrum.   The emotional burden becomes exhausting. For caregivers, there is some need to “move on” and have a life of their own, rather than continuing with the “36 Hour Day,” the title of the book by Nancy Mace and Peter Rabins.   .  The necessity to “move on” did not became part of my thinking until more than 2 years after Beverly was in this institution.  But I later realized  that I had overdone the dedication to caregiving, even after she moved out.

            Closely connected to “moving on” is the caregiver’s need for other activities, perhaps even work (as with Kleinman), family events, friendships, and churches/interest groups/etc.  I was able to put that all aside, though it ultimately cost me, as I have had to  recover some relationships and activities.  For several years before the institution, there was little opportunity to be away from her and even for two years at the institution, I did not choose to do much away from her.

            The process of getting the person moved is likely to be troublesome.  Many with dementia do not want to move into an institution and adamantly resist.  And, even if you have the legal right to force it, forcing the issue should be avoided if at all possible.  The persuasive lure will not be the same for all of them; it is essential to find something to make it attractive.  It may be worthwhile to go to the chosen place with them.  Check out the other people there; can they talk with some others? Activities may be attractive; go with them when there is entertainment they would like.  And hopefully visit for a meal; check the weekly menu for something they might prefer.  Finally, “happy lies” will be necessary.  Inform him/her that they are moving in for a couple of weeks while you have to be away to take of an ill family member or on a business trip.  Or that they will stay there while you have surgery and rehabilitation from your shoulder injury.  One man at our facility was told by his family that he was moving into this place for a conference he wanted to participate in.  He excitedly helped move in his own furniture.  However, somewhat later, he was angry when he learned the conference was not happening and he had the memory to know he had been duped. Another man I heard about resisted moving, but liked it after getting in as there were “so many women.”

            So Beverly’s move was essentially driven by the dangers of staying at home, including wandering and anger that resulted in a medical crisis from her fall.  It was easy to manage as she went from the hospital to rehabilitation (staying in a room for some weeks), then moving to a different room in the same facility.  And, given a number of subsequent medical crises since, it is best to have her in a quality facility.  Yet in the time leading up to this change, there was certainly a long spell of ambiguity about whether and when/where to move.

            The bottom line for such a decision is that caregiving is a two -person process; we want the best care for our dementia patient, a care normally connected to at least a primary caregiver, continuing after the patient moves into a facility.  The dementia patient has become difficult to manage at home.  And the caregiver’s health, mental health, and motivation to care for the other and for themselves are all important.