that there were some very manageable interventions to
be made which would help protect against such a crisis occurring.
This case came to me
over the internet. The family was in desperate need of services and they had no idea
where to turn. They found me through my website, Eldercareny.com, and sent me an
e-mail. I responded with a phone call. Since I did not come recommended from
someone they know, it took them some time before they agreed to sign on with me, and have
me start doing any work. The point is that there was no referral here, from which
they might have had some sense of my work before their first contact.
This story is -- to a
large part -- a description of the process I went through to educate the parties about the
work that I do. The main reason I pursued this case is that this scenario is typical of
what happens with many new clients. Before
theyll hire me, they have to buy into the plan Im recommending and trust my
judgment, which often takes a lot of time to engender.
The case involves an
elderly man in his 80s, who is referred to as Uncle John by his nephew, Matt,
who first contacted me. John never married and
has no children. Matt describes John as a really nice man who was a loner even before he
got sick, but was functioning well until dementia struck. Now hes gradually
slipping, to where hes not taking care of himself, his personal hygiene
is not good and hes lost a lot of weight because hes not eating appropriately
and that was never an issue before. He
cant get out to the store because hes more physically frail. He does drive despite being told by his neurologist
that he shouldnt be driving. And they
talked about how they talked with him about it. He
hears the family tell him that the doctor told him not to drive, but he doesnt
understand on what basis, so he continues to do it.
That there are other
people involved in this is complicating the matter. Matt
and his wife live in the Albany area, and Uncle John lives in Brooklyn. Theres also Matts brother Mike and his
wife, so there are four people involved and who understand that John needs help. Matt is the liaison between John and the rest of
the team. John talks to Mike; he
reports in and then Matt comes back with more questions.
sister, Anna, lives in NJ. Shes been the primary caregiver and, during the
summer, Anna lives with Uncle Joe in his house in Brooklyn, which he owns, but can no
longer take care of. Matt feels that Anna overestimates Johns capacity to
carry on day-to-day living. She thinks hes physically capable as far as the
driving, and just feels that he is being stubborn and that is why he fails to take care of
himself properly. Anna is younger and shes mentally and physically intact, but
shes feeling extremely overwhelmed, knowing that John is not getting the care that
he needs, but feeling, unfortunately, that its Johns fault for resisting the
Anna thinks the
situation could be fixed if John wasnt so stubborn, so she doesnt really get
the idea that he needs special help. Theyre
supportive of Anna and theyre appreciative of all that Anna does, but theyve
come to the conclusion that Anna is running herself into the ground trying to do
everything. Part of the problem is that Anna
thinks that she can do it and the family is starting to see that she really cant,
and that she would really benefit from some help.
Anna probably feeds the
problem by arguing with Joe and this is often what happens -- that close family
members are too close, and cant step back and see that its an illness now
(especially that theyre brother and sister).
The group has talked about that we dont have access to the
money to pay for Johns care, and we talked to John about it and he doesnt see
what the problem is. He doesnt see
that he needs help so he really doesnt understand why theyre so concerned
about having access to the funds. Of course,
it probably puts him on the defensive because he doesnt understand what
everybodys up to, even though I think he trusts them, to this point.
Matt and the others
strike me as very compassionate, smart people who really want to help John and have no
other motives. But the issue seems to be (and Ive seen this many times) that for
even educated people whove never had first-hand experience with dementia; its
very hard for them to change their understanding of what dignity means. And even more importantly, how you can honor their
dignity when you dont divulge with the person everything youre doing for them.
So I gave Matt a mini
lesson on dementia and why it doesnt make sense to share every detail about
everything that everyones thinking about what his needs are, and how to go about
The group agrees to go
forward and he calls me and says OK were going to be in town and maybe
well get together then. He later sent me
an e-mail describing how theyve hit a wall as far as Uncle Johns understanding
what they wanted to do for him, and that Anna was not grasping what they wanted to do.
Anna had reached a point
to where she needs to be relieved of some of this information; maybe they dont have
to share so much with her right now. And that
shes in as much need of help really as John, in a certain way, so what I suggested
is that we need to strategize about how to help Anna help John. I suggest that maybe we should do that in a
conversation not with Anna, because we need to figure out how were going to do that,
so that we dont lose her as a partner in the whole thing.
Were ready to go, but I think you need to speak with Anna about your
fees. So I point out to Matt that when
someones in distress about an elder care issue, you usually dont want to talk
with them about money because, even if money isnt an issue as far as being able to
afford the service, its usually the thing that turns the conversation off, because
people first think, Oh, we have to pay for it? We
dont need it I suggested that if
paying for the services isnt an issue, than the family start talking about that, and
get a handle on that so we wont need to involve Anna in the money right now. We just need to get her some help.
Matt closes every
conversation with Well, Steve, you really seem to know what youre talking
about, and Ill talk to the others about what you said. And I generally give
people time when I sense that they really are interested.
I will give them quite a bit of time to come around to actually hiring me. Up to this point in the story, I had not yet been
I wasnt sure how
Matt was going to take my suggestion about the money because that often gets sticky. He might infer that he has to pay when that was the
last thing he was thinking. He didnt and
ultimately he understood where I was going with it and that he was going to speak with the
other relatives about going ahead with the conference call so that we could strategize
about mobilizing and making an impact on the situation.
I did hear back from Matt,
and we scheduled a meeting on a Saturday at Uncle Johns house. Present were Matt,
Mike, and their mother (Uncle Johns sister-in-law). The surprising outcome is that
we came to a consensus that Uncle John is doing quite well, and no drastic measures needed
to be taken. Things had gotten intolerable for Anna, and she moved out. So Uncle John was
living alone. Many of the issues of concern that had been raised had been overstated by
Anna. He had in fact stopped using the car. His hygiene was not bad. He was not socially
isolated. He seemed to have a routine, and all of his needs were basically being met. The
family simply had to contact his doctor to verify what medications he is supposed to be
taking, and implement a system of checking if he is taking them, which they thought they
could do through a relative in the neighborhood. The other issue was financial, and they
had a plan to address that.
Although I was not needed to do much, they
placed great value in how I helped them evaluate his situation and take away the anxiety
that they were feeling that he was one step away from a catastrophe. Now they have a
viable plan that they are confident they can implement.