Posts Tagged ‘disability’

Last June I was interviewed by Nell Bernstein, Senior Editor at Caring.com about what “I would have done differently” in caring for my mother based on what I know now. Below is my response:

Talking With David Solie
June 2008
Nell Bernstein, Caring.com senior editor

Caring.com advisory board member David Solie has spent his career of helping
seniors navigate their final years — as a geriatric psychologist, CEO and medical
director of a life insurance brokerage corporation, and author. His book How to
Say It to Seniors: Closing the Communication Gap with Our Elders is a wise and
insightful guide to helping adult children understand and communicate with their parents, based on an understanding of old age not simply as a “loss of faculties” but as a unique developmental phase with its own tasks and challenges.

Just as parenting experts can fall to pieces when faced with their own tantrum-
throwing two-year-olds, however, Solie found his eldercare skills put to the test
when the health of his fiercely independent mother began to deteriorate, and a
cousin “sounded the alarm” about her safety living on her own. To complicate
matters, she was a caregiver herself — to Solie’s adult brother, who has Down
Syndrome.

There were taxing moments – such as when Solie’s mother broke her wrist and
fired every caregiver he brought in to help while she recovered. But mother and
son were able to come to an agreement that ultimately brought them closer
together.

Q. Comments we hear frequently from readers of Caring.com are: “I think Mom should move and she doesn’t want to” or “I don’t think my parents are safe in their home any more, but I don’t know how to talk to them about it.” Have you found that these dilemmas are pretty common?

A. I hear about them all the time. There are probably ten versions of the
question, but they all come down to: “How do I talk to my parents about
moving?”

My mom just died last year at age 90, and my dad died in 1989, so I have a very
long “residency” in this myself. I am also part of a unique subset of the care-
giving community because I have a brother who has Down Syndrome. He was
living with my mother until she had a stroke, so the issue was not only the care
giving of an aging parent, but the complexity of having a disabled person riding
shotgun. If you think getting a parent to move is complicated, try getting them to
let go of a disabled child!

Q. What happened when you tried to get your mother to move?

A. At first, I was asking for my brother to be in a group home and constantly
talking her about transitional places for her to live — if not today, then when she
could no longer ambulate in the house. I’d find a place and show it to her, and
she would always say the same thing: “Maybe when I get older.” This was at
age 87! It was the perfect way to pull the rug out from under me.

Her decision – and the one I ultimately honored, though at times it was difficult
to do so – was that she did not want to move, even though her capabilities
started diminishing. She had osteoporosis, spinal compression fractures, and
difficulty ambulating, but she was tough. As the world sort of shrank around her,
the La-Z-Boy in the backyard was like the Alamo – she defended it to her death.
Then she had a massive stroke and had to go into skilled nursing for the last ten
months of her life.

Q. Were you comfortable with her decision to “age in place,” as so many of
our parents insist on doing?

A. Well, with other family members telling you what to do, you get to this point
where you feel some sort of spiritual or fiduciary responsibility if you don’t act.
My cousin, who lived closer to her, raised the alarm that my mother couldn’t
bathe herself, food wasn’t doing well in the refrigerator, and she was having
trouble with the stairs to do the washing.

My cousin mounted a big case and wanted intervention, and we showed my
mother some places, but she absolutely refused to move. She said, “No. This is
the house your father and I bought, and I’m not moving.” She was adamant. We
had bought a long-term care policy that included in-home care, but she
considered it a disgrace to have anybody in her home. So she did everything by
herself, in her own way.

Q. How did you come to understand her perspective?

A. At one point, I went to talk to our family attorney about what I could do, and
he said a wonderful thing. He said, “Look, you can go to court and try to get a
conservatorship. I think you’ll fail. I’ve talked to your mother. She’s coherent.
She’s articulate. She’s political. She’s insightful. She moves slowly and she
can’t open up a jar of food the way she used to, but here’s the thing: You’ll
destroy your family forever. So here’s what we do – we wait. You should know
this, because you write about it.”

I said, “I do know, but I feel guilty.” And he said, “OK, then wait with guilt.” And
after she died, he came to the funeral and said to me, “Good job. You did what
you were supposed to do. You waited.”

Q. What did he mean by that? What is “waiting with guilt?”

A. Sometime when we look at moving our parents from their homes, we think
we’re doing something helpful and healthy and safe, but we’re completely blind
to their internal architecture. Emotionally, they have a lot of secret scaffolding
that holds them up on so many levels. All meaning — everything — is tied to the
home. Once we yank ‘em out of that, it’s over.

When I went to my mother’s house and looked around, I could see she had her
world orchestrated. It was exactly her world. And I could not imagine her ever
being content anywhere else. I really feel we underestimate how important that
is.

That?s why, when we’re having this conversation ten years from now, we’re
going to be saying that aging in place has become the solution, not what I call
“production aging”: more assisted living, more nursing care. I think we’re going
to find a lot more technology allowing a lot more people to hold onto their
places. The home is going to undergo an organic modification, and we’re going
to be bringing a lot more to them in the home.

Q. But there are so many arguments on the other side ? that by moving to a retirement community, our parents will become less socially isolated, safer, and better cared-for. Why do you think the drive to remain in their own homes is so profound for so many older Americans?

A. In 20 years of working with seniors, I?ve come to know how deep the need for
control is in that age group, how little they ultimately wind up with, and how
closely control is tied to dignity and hope — not hope that you’re going to be
young again, but hope that you’re going to get some good days. These people
are not naive; they’re not the least bit unaware; they just want some good days.
Some days are better than others, but when you compare it to anything else,
days in your home – as long as you can cut it – are great days.

That’s what I found out when I sat down in my mother’s old, worn-out La-Z-Boy
with the tuner with the larger buttons and the Collier’s magazine from 1946. I
realized that in a world of great instability — her friends had passed, my dad was
gone, her neighbors were gone — this house was her anchor on so many levels.
Looking at that, I felt it was profound hubris on my part to be all knowing and
righteous about where she should live.

Q. But how do we balance respecting our parents’ need for control with our desire to keep them safe?

A. I built scaffolding around her. I took care of the wills, the long-term care
insurance, co-guardianship, and power of attorney for health when she got sick.
Then she fell and broke her wrist, and I couldn’t wait for the cast to come off
because she fired so many caregivers in a row. Three days and they were gone;
the agencies were exhausted. This fairly petite Norwegian immigrant had the
ability to exhaust whole tribes of people. She would take ‘em down in droves.
It was too much. It wasn’t necessary. Had I relaxed my hand a bit, my mother
wouldn’t have felt under so much duress, and wouldn’t have dug in so deeply.

Q. It sounds like you came to terms with this aspect of her personality by trying to see things through her eyes rather than trying to get her to see them through yours.

A. You have to understand what you’re asking of older people when you ask
them to move. You’re asking them to give up the equivalent of water or oxygen.
So if you’re going to take the bold step of being smarter than your parents and
telling them to move, there are two things you should know, that are borne out
by research and surveys. Number one, as a group, they are remarkably robust
and not afraid of death. And number two, they are afraid of nursing homes.

Q. It sounds like you made a lot of concessions to your mother’s point of view. Did you ask her to make any compromises?

A. I just said to her, “Mom, I know you want to be in control and independent,
and I know that, above all, this house is where you want to stay. But if we’re not
careful here, something could happen, and then all of a sudden your life could
be thrown out of control in a way you don’t want.”

So when I told her I wanted her to get a personal emergency response system,
she said “OK, I’ll meet you halfway because you’re not trying to stuff me into
assisted living.”

Q. Is there anything you know now, looking back, that you wish you’d
known while you were in the thick of the care giving experience?

A. I wish I had known that I didn’t have to be so anxious about it — that
ultimately, worrying about all these horrific scenarios didn’t change the outcome
or make me a better caregiver. We rev ourselves up so much to do the right
thing in the caregiver role that it can really become too much. I wish I’d relaxed
more and spent more time on what mattered the most.

If I were doing a post-mortem on the whole experience, I wish I had just told
myself, ‘Relax, it’s OK. There’s not a scorecard for you in terms of whether you
were the perfect care provider because you covered every safety base.’ What
our parents really need from us is comfort, and our friendship. It may be
counter-intuitive – it may seem that we need to convince them that we know
best — but they need to be accepted where they’re at.”