When your home is no longer a castle

(Part 1)

It is human nature to complain. Especially for a “chronic kvetch” like me.

When caring for my mother long distance, it seemed obvious to me that the best way my late father could have spent his money was to secure (ahead of time) long-term-care insurance so she could stay in her home. It would have been impossible to keep her there with 24/7 home health aides without it.

But shortly after she passed away, another reality hit me—that the money spent on long-term-care could not also be spent on purchasing their apartment.

The apartment was nothing special, yet it was everything special. It had two bedrooms and two baths, and a copious amount of closets uncommon in newer dwellings. It also had a terrace—which made Manhattanites feel they had more space than they actually did. But my father had obtained permission—the first and only tenant in the building to do so—to make room for more shelves and books.

It was a doorman building. Nothing elegant, but well maintained. In fact, whenever the management made an attempt to prettify the lobby, at least several people would complain that the rent was likely to go up and that the efforts didn’t suit. Every holiday season a hanukkiah, and a Christmas tree adorned the lobby, and extra lights. Requests for repairs were mostly fulfilled quickly, though not always by fluent English speakers. The elevators were rarely out, and came quickly.

Above all, the apartment was about location, location, location. Much to my initial despair, my parents left their Brooklyn apartment to move to Manhattan so my father could be closer to work—in fact, he gave up his car and walked there. The Upper East Side apartment was close to all kinds of shopping, synagogues, and train stations (even the genesis of the long-awaited Second Avenue subway). It was like six avenue blocks from Museum Mile, and the same distance from entrances to Central Park. And there was another smaller park, near the Mayor’s mansion and the East River.

Considering Manhattan to have been a fine place to visit but kind of “scary” to live in, I was at first very unhappy about the move. But within six months, I was sold, and Brooklyn began to be “foreign territory.”

So what could be bad? On top of all those attractions, the rent was amazing. No one could believe an Upper East Side apartment could be had for so little. And by the time my parents became “senior citizens” officially (though to me they remained young for many more years), the building had turned coop. But they could not be forced to buy. Had they bought, the rent would have gone up considerably…

And then my father, and later my mother, passed away. Suddenly it occurred to me that the apartment they had occupied for 44 years wasn’t going to be theirs anymore. I would have been able to hold onto the apartment had it been my primary residence—but that would have meant getting my mail there and voting there and having a driver’s license there, when I lived 180 miles away in Harrisburg, Pa.

The most the management would do was honor my mother’s lease, which had about a year and a half to go. We could keep furniture in the apartment, but we couldn’t stay overnight or allow an auctioneer to sell things off unless a family member was there. That would have meant doing a lot more traveling back and forth and losing more time on my work—as I had done for the three years of my mother’s illness. Besides, paying rent on a lease that would end in the apartment being sold at a price nowhere near affordable was only postponing the inevitable.

Caregiving: So Much to Do…

Have you ever applied to a job you thought would be a good fit–even a breeze–only to be daunted by the long list of extensive job responsibilities that sounded like a month would be required to do that which was “daily” in the eyes of the employer? Of course, it could be that once you took the position (if you weren’t scared away), you find that everything is much easier and quicker than it sounds on paper (or online). Or, it could be that about 10 other responsibilities had been omitted from the list, and within a week you wish you had never seen the job notice.

You get the picture. How does this apply to caregiving? Only someone who hasn’t done it would ask the question, or need to. In the course of a visit with my mother while I supervised her care long distance, I found myself being an accountant, health-care administrator and/or advocate, volunteer coordinator, nurse’s aide, banker, telephone correspondent, housekeeper, shopper, transportation coordinator, personnel director, and on and on. That probably only scratches the surface, but I can’t think of more right now.

In the course of a week, I’d be paying the aides and sometimes struggling with them about doing their jobs, going to the bank to make deposits, dealing with the accountant, filling out forms for long-term-care insurance, buying food, trying to round out volunteers from a few different organizations and work out schedules, consulting with the care manager the long-term-care company had insisted on–whether it really added to my mother’s quality of life or not–e-mailing my mother’s internist with concerns. I wasn’t necessarily good at any of these things initially–I’m a writer, not an organizer–but it’s like being put on stage at the last minute without rehearsals and without knowing more than a few of the lines because you heard the main actor reciting them and being expected to put on a sterling performance.

What choice do you really have? There isn’t anyone else to do it, maybe, and the show must go on. Besides, if nothing else, you want your children to do for you what you are doing for your parent, and the only way to achieve that (with a dose of luck) is to model the behavior.

Caretaking: More on Grief

A visit to my niece and nephew-in-law in New Orleans elicited more thoughts about grief, as did a conversation with a theater friend today who started reminiscing about the passing of his father around the time mine died.

On the Torah ark of the New Orleans (actually, Metarie) synagogue they had newly built after the devastation of Katrina, the words are engraved: “Many waters cannot extinguish love.” This verse, from the Song of Songs, of course relates to the power of romantic love but also the destructive waters of the hurricane.

But for me, the words resonated in a different way: The passage of time does not necessarily extinguish the pain of loss. As another friend said the other day in response to the horrible, incomprehensible shootings in Newtown, Conn.: “No one gets over that, but the truth is, with any death of a loved one, even an old person, you don’t really get over it. You simply move on and get past it.” No lessening of the nightmare the family members are going through–simply an acknowledgment that loss of a loved one is in the best of circumstances, painful. In other circumstances, like Sandy Hook, it is excruciating.

Again, though, there are so many components. One might think that a very close relationship with a loved one would mean more-intense grief, or that an indifferent one would lead to a rapid dissipation of grief. But that would not be taking into account the fact that (as in the case of my friend) someone might be “relieved” that a loved one is no longer suffering, or that a person might be overcome with guilt for what he or she didn’t do while the family member was alive. Nor does such a conclusion consider that a caregiver might react with anger and frustration despite a previously warm relationship or that, alternatively, he or she might be swept into deeper feelings for the family member because of the very act of caregiving. Sometimes the emotions follow the actions.

My friend is a case in point. He considered his father his “best friend,” yet, after his father suffered from cancer for a year, he found himself wishing that the suffering would end. He was at peace with his father’s passing because they had spent a great deal of time together during that year and had said “all I wanted to say.” They had expressed love for one another, and were together when his father passed. In contrast, many people told me that I would feel a great sense of relief after my mother had died, because of the exhausting process of caring for her from afar and her dual diagnosis of lung cancer and dementia. They also pointed out that even though she still recognized family members and aides, the time would probably come when she wouldn’t–and I should be “glad” my mother (and we) did not reach that point. The relief somehow never came; in fact, as exhausting, expensive, and terrifying as the caregiving was, I found myself missing it–being uncertain what to do with myself afterward. Perhaps, too, the anger at and fear of dementia–which some day might plague me–overcame any sense of relief.

So, as with any other emotion, it’s complicated.

Caretaking: Grief

At some point, in a formal way, at least, caregiving ends. The loved one you have been taking care of in whatever way you have passes away. Other than completing paperwork–which, it has been estimated, could take up to a year–your obligations are over.

What is left are memories, sweet, bittersweet and bitter, and the necessity to return to the world and of living devoid of that person. But before that return takes place, the caregiver (like every other human being who has lost someone) experiences grief.

Elisabeth Kubler-Ross aside, every human being undergoes the process of grief a different way. Sure, there are patterns and commonalities, but the exact shape and duration of the sadness, pain, loneliness, and sometimes depression that compose grief differ for everyone. The course is grief is influenced by personality, temperament, culture, prior experiences with loss (and other significant events), and the amount of support one receives. Plus, the outward manifestations of grief may be very different from what the person is feeling inside. There are people who “don’t cry,” or won’t cry. There are people who seek solace in frenetic activity and being around people; others “want to be alone.”

What was grief like for me? I found that it was totally different after my father’s passing than my mother’s. I was kind of quiet, almost speechless, over losing my father. From the age of 36 on, I had lost many friends–some close. Death always, to quote my kids, “sucked.” And I had watched friends lose children to many causes–suicide, terrorist attacks, illness, and accidents. Nothing could compare to that, so when I lost my father, I almost felt guilty grieving a great deal. Besides, I had my mother to take care of, and my kids were still in high school, so it seems they, who had been so close to my father (as had I) took on the outer trappings. But when my mother passed away, the grief was much more intense. Now I was fully “orphaned,” instead of just half. A mother is a mother. I had undergone another traumatic event right before her death, and perhaps, most tellingly, I had taken care of my mother for almost three years. People I know in that position, especially those caring for a loved one with dementia, seem to take death very hard. The feeling is magnified by the sorrow over watching the mental decline of a loved one, as well as the fear that the same might happen to you years from now. All that combined to make a very resistant sense of grief. I could go on analyzing, but the truth is, it’s taken a lot longer for me to get over the loss of my mother than I had expected.

I could chastise myself when I see a family member who lost a mother very suddenly, a woman younger than mine had been, bouncing back much faster. But such is life.

Getting to Know You (Part II)

During the course of my mother’s final illness (she passed away from lung cancer, but also sufffered from Alzheimer’s), the two most-frequent questions people asked me were: Did she still recognize me, and was she “Alzheimer’s angry.”

Many people with dementia do become agitated and irritable, especially during the “sundowning” period of late afternoon-early evening.

There were such moments with my mother–and those were hard to deal with–but by and large, she was unfailingly gracious to everyone she dealt with. On November 18, which marked the anniversary of her death two years ago, her main caretaker wrote on my Facebook page about how “another angel” had been taken to Heaven. Along with her appreciative aides, both of whom came to her funeral, everyone who dealt with my mother during her final three years–the friendly visitors, physical therapists, doctors, nurses, care managers, even the hospice staff–remarked constantly about how lovely a woman she was. People would come to take care of her needs, and she would ask them immediately how they were. She knew the stories of many of their lives–often repeating them, because of the dementia. But the point is, she cared.

She also became increasingly affectionate. To the degree that the Alzheimer’s had taken its toll, she would get upset if her grandchildren–two of whom lived with her at different times–didn’t kiss her when they came in or left. This was a totally different person in terms of physical affection. Was it the lack of inhibitions that dementia sometimes brings about? Was it the realization, even if unconscious, that the end was near, and that her mind was going? Whatever it was, the hugs and kisses I hadn’t easily received during my childhood were amply available now. It was lovely getting to know that side of her.

Caretaking: Getting to Know You (Part I)

A post on the blog “Mom & Dad Care” referred to the abrupt change in the writer’s relationship with his father when the latter developed Alzheimer’s. 

Something similar happened to me. 

My mother’s Alzheimer’s, amidst all the negative and painful aspects, was a way for me to get to know her. 

Unlike the Rodgers and Hammerstein song, though, the realization was at best bittersweet.

My mother was a lovely person; I doubt there was anyone in her entire life who disliked her. (In my prickly, definitive sides, I took more after my late father.) She took literally the admonition to never judge a person till you walk a mile in his or her shoes. She was always trying to find excuses for everyone, including people I considered absolutely “rotten.”

She was also scrupulously honest. If her life had depended on it, or a grade, I don’t think she would have been able to conjure up a dishonest scheme, let alone implement it. 

I respected all that, and yet, we weren’t close. We got along fine. There were occasional conflicts or moments of tension, but basically, we got along fine. She was always there for me. If I had problems with men or with friends, it was she I was more likely to talk things over with. And yet,I was much closer to my father and much more like him.

One reason is that my mother, for all the warmth and graciousness of her personality, was not a physical person. She was not huggy-huggy or kissy-kissy. I was, and my father was. I was generally drawn to people who were. When I was a little girl I associated love with hugs and kisses–many kids do, I guess–and it was only later that I accepted her for who she was. But there was that twinge of disappointment. 

I made up my mind, as a result, to be much more kissy and huggy with my own children. 

Then my father passed away, and my mother began to exhibit symptoms of what was later diagnosed as Alzheimer’sI became her long-distance caretaker. Suddenly, I began to know her better. And suddenly, oddly enough, she began to be more physically affectionate. 

(to be continued) 



One of the odd thoughts that went through my head when Hurricane Sandy struck — hitting New York City particularly hard — was that it was a “good thing” that my mother wasn’t alive to see it.
This was probably the first time a thought like that had come to me.
But, with the obsessiveness of dementia and with the habitual news watching she had learned from my late father, my mother would have watching CNN or New York 1 most of the day and found it too overwhelming.
That’s an odd segue, perhaps, to the realization that it’s nearly two years (November 18, 2010) since my mother passed away. For nearly three years before that, after my father’s passing, I had been in charge of her care long distance. It was not only one of the hardest and most painful things I’ve had to do in my life, but also an experience that has left its mark.
Sometimes, as when we go to the dentist or even have major surgery, once the pain is over, it’s over. Even long-lasting emotional pain eventually dissipates in most cases. But there is something uniquely painful about watching a loved one deteriorate — especially when the mind and personality are altered irrevocably by Alzheimer’s or another dementia (at least until someone comes up with a cure or even a way to slow it down considerably) — that leaves lasting scars.
I will discuss some of the aspects of that caretaking and some of those scars in this blog.