4. Getting Help When the Person's Needs Are Gradually Changing


Sometimes the desired goal can only be attained by approaching the problem from an unfamiliar route. In this example the family needed an outside person to help them get a handle on what the problems were and to prioritize what actions needed to be taken and what actions in fact did not need to be taken. This was one of those unusual examples where the crisis that they perceived was not in fact a crisis, and 

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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 they’ll hire me, they have to buy into the plan I’m 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 he’s gradually “slipping,” to where he’s not taking care of himself, his personal hygiene is not good and he’s lost a lot of weight because he’s not eating appropriately and that was never an issue before.  He can’t get out to the store because he’s more physically frail.  He does drive despite being told by his neurologist that he shouldn’t 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 doesn’t 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.  There’s also Matt’s 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.

Current Situation

Uncle John’s sister, Anna, lives in NJ.  She’s 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 John’s capacity to carry on day-to-day living.  She thinks he’s 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 she’s mentally and physically intact, but she’s feeling extremely overwhelmed, knowing that John is not getting the care that he needs, but feeling, unfortunately, that it’s John’s fault for resisting the help.

Anna thinks the situation could be fixed if John wasn’t so stubborn, so she doesn’t really get the idea that he needs special help.  They’re supportive of Anna and they’re appreciative of all that Anna does, but they’ve 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 can’t, 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 can’t step back and see that it’s an illness now (especially that they’re brother and sister).    The group has talked about that “we don’t have access to the money to pay for John’s care, and we talked to John about it and he doesn’t see what the problem is.”  He doesn’t see that he needs help so he really doesn’t understand why they’re so concerned about having access to the funds.  Of course, it probably puts him on the defensive because he doesn’t understand what everybody’s up to, even though I think he trusts them, to this point.

Steve’s Role

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 I’ve seen this many times) that for even educated people who’ve never had first-hand experience with dementia; it’s very hard for them to change their understanding of what dignity means.  And even more importantly, how you can honor their dignity when you don’t divulge with the person everything you’re doing for them.

So I gave Matt a mini lesson on dementia and why it doesn’t make sense to share every detail about everything that everyone’s thinking about what his needs are, and how to go about doing that.

The group agrees to go forward and he calls me and says “OK we’re going to be in town and maybe we’ll get together then.  He later sent me an e-mail describing how they’ve hit a wall as far as Uncle John’s 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 don’t have to share so much with her right now.  And that she’s 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 we’re going to do that, so that we don’t lose her as a partner in the whole thing.

Matt says “We’re ready to go, but I think you need to speak with Anna about your fees.”  So I point out to Matt that when someone’s in distress about an elder care issue, you usually don’t want to talk with them about money because, even if money isn’t an issue as far as being able to afford the service, it’s usually the thing that turns the conversation off, because people first think, “Oh, we have to pay for it?  We don’t need it”  I suggested that if paying for the services isn’t an issue, than the family start talking about that, and get a handle on that so we won’t 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 you’re talking about, and I’ll 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 retained.

I wasn’t 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 didn’t 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 John’s house. Present were Matt, Mike, and their mother (Uncle John’s 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.

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