Month: August 2017

9. How Patients See Home Health Aides – The Aide as Persecutor (2)

In this blog we will continue talking about ways in which aides can impair the lives of their charges.

  • Aide as Reorganizer

There are aides who rearrange things in the patient’s house in ways that make more sense to the aide but leave the patient searching for things, especially if that aide is not around. This can be especially true regarding cooking utensils and foodstuffs, bathroom articles, soaps and laundry detergent, and clothes and other personal items.  I’ve had several sight-impaired patients whose aides rearranged their belongings either from a misplaced sense of helpfulness or from sheer stupidity. This can be devastating as you try to navigate your environment and maintain some sense of independence.  Some patients with dementia, may think the aide stole things when they cannot find them.

This is something that can be prevented as the aide begins work. While the aide always receives a list of required duties, the patient, or patient’s family, can also include a short list rules (this will be the subject of another blog).  One of these is an instruction NOT to rearrange or move things around.  It is also useful to go over this with the new aide, verbally and remind them if things are out of place.  Remember, also, the aide may forget where something goes.  If so, it is to be hoped that she will ask.  The patient or family member who finds things being reorganized and doesn’t like it should say so firmly as soon as they discover it is going on.

An aide who decides to redecorate might consider the following:

  1. Ask the patient or family member FIRST!
  2. If the patient agrees, tell the patient where you are placing things and remind them several times.
  3. Label drawers or closets. A post-it note can be very helpful. This will also help other aides (patients may have two or three).

Another very common problem concerns aides (and patients) with differing languages and/or accents. This problem is magnified when the patient is hearing-impaired or suffers from memory loss.

  • Aide as alien:

This is a difficult issue. In large cities, particularly NYC, many aides speak English as a second language or have thick accents that take some getting used to.  Additionally, many patients also have limited English skills or themselves speak with a thick accent.  This can cause serious communication problems between the patient-aide dyad.  Other problems include aides with very low voices working with hearing-impaired patients.  This is not something dealt with in “aide-school” but it ought to be.  Aides can be encouraged to speak slowly, enunciate better and not take personally having to repeat themselves.  It is of great importance that they be at least aware that there is a problem and that it is not exclusively the patient’s fault.  The patient or family can help be aware of the problem and find a mutual solution.  The time to deal with this is when the aide arrives and the language problem becomes evident.

I would like to relate a situation like this that I was able to repair. The patient, Ms. X, an MS survivor, told me in her very weak voice that she didn’t understand her new aide’s name.  She said she had asked, twice, but couldn’t make out the answer.  She was depressed and uncomfortable about having an aide she couldn’t identify or call (She didn’t want to yell “Hey, you!”)  With the patient’s permission, I went to the aide, introduced myself and asked her name.  She mumbled something several times which I couldn’t understand and then finally showed me her ID.  In tiny letters, there was a name I had never heard before, “Edverlith.”  I said to the patient, “You know, your aide has a name I never heard before and which I find difficult to pronounce.  To the aide, I asked:  “Is there some name or nickname that Ms. X could use that would be easier for her to remember and say?  The aide suggested Edy.  The patient’s mood improved during the rest of the session. This was confirmed, the following week when Ms. X told me she felt that my intervention had given her some control of her environment as she could call the aide by name.

This solution may seem simple, but the patient could not articulate her discomfort and couldn’t think of what to do. If there has not been initial education of the aide, the next good time is when the problem in communication occurs. It can be helpful to have an outsider intervene.

In the next blog I will discuss deliberately malign actions by aides.

8. How Patients See Home Health Aides – The Aide as Persecutor 1

For some chronically-ill patients, the presence of and need for an aide is so humiliating and enraging, that the aide, regardless of their personal or professional qualities, takes on the persona of persecutor. They come to embody or symbolize the illness or disability to the patient.  While the perception of the aide as persecutor may come largely or even entirely from the patient there are times when the aide is indeed a serious problem.

In this, and in the next few blogs, we shall look at “The aide as persecutor” in a number of iterations. In each case we will look at the aide’s effect upon the patient and what might be done about it.

  • The Aide as Idiot

In my many years as therapist to chronically ill and disabled patients, I have heard and heard reported a number of supremely idiotic remarks made by aides with little imagination and no impulse control. Some examples:

Said to a nearly paralyzed patient: “You are so lucky.  You get to spend all day in bed!”

Said to a Jewish patient: “you know, you Jews…….”

Said to a nursing home patient: “In our culture, we NEVER put our relatives in a nursing home. The family always takes care of their own.”

What do you do with someone capable of uttering these inanities? That depends on a number of factors.  If the aide is technically skilled, gentle, efficient, honest and in other ways satisfactory, it might be worth it to try and gently explain that these are offensive remarks.  If necessary, a relative or friend might do so.  Also, how often does the aide make such remarks?  Daily?  Weekly?  Once?  If most of the aide’s other qualities are good or acceptable, it may be worth it to tolerate an occasional stupid remark. If it happens too frequently, then, of course, the aide has to go.

There are some aides who make inappropriate remarks related to religion, diet, or another type of lifestyle choice.

  • Aide as fanatic

A number of my patients have reported aides asking about religious beliefs.

  • Said to a Moslem patient: “Have you found Jesus as your personal savior, yet?”
  • Said to a Jewish patient: “I’m going to pray over you for Jesus to heal you.”
  • An aide accompanying a patient in the community engages others in religious talk and leaves religious materials at doctor’s offices and other places they go while she is working.
  • Said to a woman with multiple sclerosis: “If you give up nightshade vegetables you might be cured.”
  • Said to a male patient with a complicated medication regimen: “You take too many pills. All you need is a multi-vitamin.”
  • “You’d feel better if you’d just eliminate gluten!”
  • “You’d be able to walk if you’d just get up and try.”
  • “I know a Chinese herbalist who could cure you in a moment.”

In such cases, the aide must be told, and in no uncertain terms, that these remarks or actions are uncalled for and unwanted and must stop immediately. If they don’t, the aide must be reported and replaced as soon as possible.  Unfortunately, I have found it is very difficult to stop this sort of behavior for long.  A serious consequence is the only solution.

In the next blog we will talk about other ways aides can annoy, disturb or torment their patients.

7. How Patients see Home Health Aides – The Aide as Friend

In this series, we are looking at the roles care receivers project onto their aides or caretakers. In this blog, we will look at the Aide as Friend.

Most of us have a specific label or pigeon-hole for somebody who hangs around your house and helps out from time to time. This label is “friend,” and is often misused or misunderstood, as when we talk about “work” friends or “activity” friends.  These are people with whom we may share certain pursuits, but whose real interest in us is more transitory or distant.  Likewise, when someone is in your house, behaving in an affable way, we may mistake their conduct for friendship.  What is the difference?

  1. Real friends choose and enjoy our company and we, theirs.
  2. Real friends share confidences and trust.
  3. Real friends care, after hours.
  4. Real friends expect and accept reciprocity.
  5. Real friends genuinely care about or even love us, and vice versa.

None of these goes with the job description of Home health aide. They are not expected to enjoy our company or to entertain us, share confidences, or be available after hours.  Their job is to provide services for which they are paid.  Over time, they may come to like, though rarely love, us.

Many caregivers feel insulted or hurt when their expectations of friendship are rebuffed. Caregivers may be uncomfortable when they are not sharing their food or facilities, or are enjoying television, DVDs or music of their own taste.  Relax.  The aide is NOT a friend and shouldn’t expect the benefits of friendship.  Obviously, we want them to feel comfortable in our dwellings, but not “at home.”  Think about how your (good) friends behave when with you and you will see the difference.

The opposite can also occur, although less frequently, when the Aide steps over the boundaries to confide or inquire about intimate things, attempt to borrow money, ask to be excused from obligations and responsibilities or help themselves to food or other objects. One needs to put a stop to it at once firmly, though politely.  Once the boundaries are breached, it is very hard to return to the normal aide/care receiver relationship.  Many a good working relationship has been ruined when pseudo-friendship intruded.  Keep it simple.  Keep it cool.  Keep it professional.


11. How Patients See Home Health Aides – The Aide (or Patient) as Bully

Continuing the theme of Concerns and Issues with home health aides, I would like to talk in this post about bullying. A very …

10. How Patients See Home Health Aides – The Aide as Persecutor (3)

In this blog I want to discuss aides who are actually deliberately malicious in their behavior. These are serious situations …

9. How Patients See Home Health Aides – The Aide as Persecutor (2)

In this blog we will continue talking about ways in which aides can impair the lives of their charges. Aide as Reorganizer …