Trained attendants for dementia home care: sharing experiences

In my March 2011 caregiver survey, many respondents mentioned issues related to trained attendants for dementia home care. Since then, I’ve gathered some information on specific problems and wish lists, but my efforts have been slowed down, ironically, because the trained attendant who helps me care for my mother went off on leave 😦

Yes, folks, trained attendants are a critical element of dementia home care.

Before I continue, I’d request you to spare a few minutes for, to share your own wish lists and problems related to trained attendants. No personal details are asked for.  (ETA: The survey is now closed, and the link has therefore been removed)

Now on to briefly narrate my own successes and failures in using attendants (allegedly trained) for helping me care for my mother…and some lessons I’ve learned along the way.

As in most dementia cases, I became a caregiver without realizing I was one, when my mother started exhibiting the problems typical of early stages of dementia. As she had not reached the threshold when a neurologist was willing to give me a diagnosis, I’d just be told: “This is common among elder people.”

Because I was ignorant about a medical reason underlying my mother’s strange and difficult-to-handle behaviour, I assumed such problems were part of ageing, and wondered how others managed and retained their sanity. I did not know there were caregiving techniques that could be applied.

My mother would forget to eat lunch left for her in a hot-case, or walk out of the house and look puzzled, or get confused between dusk and dawn, and I would try to “explain” things to her. At that point, I did not even consider employing a trained attendant.

Then came my mother’s diagnosis. The doctor told me problems of “memory loss” would increase, but the nature of problems looming on the horizon still eluded my comprehension. Even so, I could see that she could no longer be left alone at home. Accusations and delusions were becoming commonplace, as was self-neglect.

Though I wanted to recruit help, my mother vehemently opposed the idea.

She (1) did not think she had a problem (2) refused to have anyone around her all day (3) felt I was neglecting my duty as a daughter if I wanted to go out of the home instead of being with her all day. She found fault with every maid I suggested.

We finally reached an agreement that the part-time household maid would put in a few extra hours to make sure she was around for meal times (for the garam garam roti) and also take my mother for morning and evening walks in the corridor. The rest of the time one of us (I or my son or husband) had to be around, and it was typically I who ended up staying at home as my son was in his critical school years and my husband was traveling frequently. It took a toll on my professional life and social life, but I had no idea how else to handle it.

Dementia patients often resist the family’s attempts to employ help–I often hear of similar problems from others. The only thing I can think of, in retrospect, is that I could have pretended that the hired help was for helping me, not her–she may have found that more acceptable/ face-saving. And maybe I could have rearranged the home a bit so that the maid I employed could be available for my mother without seeming to be “sitting on her head all day”, as my mother put it.

To continue…the part-time arrangement of using the household maid lasted for a while, but my mother’s condition was deteriorating. The maid could not extend her hours of work, and I needed someone who could watch my mother at close quarters all the time, especially because my mother needed help even while walking. Her ataxia problem meant she could not walk without someone supporting, and her dementia made her forget that she had a problem with her balance and that she should therefore call someone to help if she wanted to walk to the bathroom. She would get up, try to walk by herself, and lose her balance. Falls were frequent in spite of my dashing to her room every time I heard her push back her chair to get up.

She finally agreed to my employing a maid as a day-time companion. We found a maid my mother was comfortable with. The problem was, after this new maid started working for her, my mother often forgot that she had agreed to her presence.

On some days, my mother was very friendly and affectionate to the new maid, but on other days, she would berate the maid, accusing her as a spy and intruder, even telling her to get out of the apartment. Or she would start cursing her, wishing ill luck on her and her family and driving her to tears. Then my mother would call me, very agitated, and demand I withdraw my spy. An hour later, she would have forgotten the quarrel and would act affectionate again.

The maid would get upset, and I’d spend hours explaining to her that Maaji had a medical problem. As far as the maid was concerned, Maaji was so sweet on one day, and so nasty on another, that the maid did not know how much and how to talk to her, and often wanted to leave the job. She would not believe that this was a medical problem, and kept comparing my mother to other (more consistent in their behaviour) old ladies she had worked with.

On some days, my mother would get into her accusatory mode. She would be unable to locate something, and tell me it had been stolen. As we had two maids at that time (one for my mother, and one for general household work), they would both get tense and start implying the other one must be the thief, till I would manage to locate the missing watch or key or TV remote in some unlikely place or another. They were terrified that my mother’s accusations would be believed by neighbors.

I was pretty raw in caregiving myself, though I had been reading up on dementia and behaviour problems, and I failed to convince the maids that it was no use trying to argue with my mother. Their agitation and arguing back worsened with every episode, and while my mother would often forget that she’d said something nasty, the maids would (obviously) not be so fast in forgetting the episodes.

In retrospect, I should have done a more systematic job of convincing the maids about my mother’s medical problem, possible using graphic representations of the brain and videos. But even today, material in Indian languages is not easy to get, and this long ago.

Things improved after we set up a care environment geared to what my mother and her attendant would need. I switched to a full-time, allegedly trained attendant, using an apartment that had nothing that could be stolen so that the attendant would not get tense if accused of theft. I used agencies that specialized in geriatric care to get these attendants, and made sure the agency heads understood that my mother had dementia.

There is, however, a difference between academically understanding dementia and understanding dementia behaviour when bearing the brunt of it.

Regardless of how much I explained the possible behaviour problems of my mother to the attendants I employed, they could not stop their attempts to argue/ explain/ show frustration when my mother showed any agitation or confusion. Every time I said the problem was medical, the attendant told me that she had dealt with such grandmothers in the past and recognized meanness and lies when she saw it. At the time I was explaining the job, every attendant would agree to not argue with my mother, but as soon as my mother got agitated and accused them of withholding food or some such thing, they’d begin defending themselves, and my mother would start saying, will you believe me or this girl?

It was…difficult.

Burn-out happened fast. Some attendants managed to last six months, some even a year, but many left earlier, one even leaving in just one hour 😦

A typical cycle would start with an attendant telling me she is trained, and agreeing to all my explanations. I would explain the recommended modality (the one my mother was most comfortable with) for each activity required–the bathing, the assisting in walk, the food serving, the administration of eye drops (I had prepared a detailed document so that I missed out nothing). I demonstrated it to the attendant. I would rehearse the required sentences using the exact phrases and manner that would work for my mother (no “tum”, only “aap”, for example).

Then my mother would use the wrong word, or get agitated, and the attendant would get confused. Or feel helpless, or accused, whatever. She would try to explain or argue, and that was that. Once my mother started seeing the attendant with anger, the episodes would increase.

One attendant, I remember, a very professional girl who did not argue back with my mother told me after three months that Maaji ne mujhe paagal kar diya (Mother has made me crazy). She asked her agency boss for a substitute, but he kept asking her to adjust and continue, saying he had no substitute.

After three more months, this attendant totally burned out. She had an urgent function to attend in her village and had told the boss about it months ago. She left home for office that day, determined to make her boss give a substitute attendant.

She returned a couple of hours later with this substitute, who, after spending half-an-hour with my mother, burst into tears saying she could not do this work. The previous attendant was, fortunately, still at home and busy packing. We called up the office and the sobbing new attendant could not stop crying into the phone. The boss assumed that this attendant had been abused or hit by us and mistreated, but luckily the earlier attendant was there to provide us a “character certificate” and to tell her boss that there had been no abuse of any sort. The boss withdrew the accusation.

Both the attendants–old and new– departed for the office, and I was left without an attendant. A couple of hours later, a new person arrived. I asked her what sort of training she had, and it turned out she had joined the agency a week ago and been working in the kitchen of their old age home because a new training batch had not yet started.

Sigh! Out came my training papers and I began training her. I can, even today, recall her embarrassment when my mother needed an enema and this untrained attendant was clueless on how to handle it and I had to demonstrate it to her.

Another problem I faced was misuse of the phone. I’d left a phone there so that I could be called whenever needed (a land line without ISD and STD), and the attendants would run up bills and deny having used the phone. I’ve paid bills of up to 12000 a month for such misuse (I wonder how many hours one has to be on phone to run up such a hefty bill–the attendant must have whispered late into the night ever so often).

When I tried pulling up the attendant, she flatly denied it. I could neither disconnect the phone, nor cut her salary, which was less than the bill. I dared not get too angry because she could end up taking it out on my mother–a dementia patient is not alert enough or reliable enough to report abuse. I faced the same problem with two more attendants. I finally switched to putting a pre-paid mobile there and said that the landline had been disconnected.

Reconciling to thefts and misuse is something I’ve seen many other caregivers do; an old lady I know told me how one by one many of the costly mementos of the house vanished; another man I know said he and his family decided that this was the cost of using hired help.

Another problem I’ve faced is the absconding.

Often the attendants would go for a short leave and not return. This was typically because their boss would not give them leave, and they were burned out, and decided not to return. There is a severe shortage of trained attendants and it is common for them to switch jobs, so quitting a job without notice did not affect their job prospects.

One occasion totally unnerved me and my mother. One attendant vanished one afternoon when I was away from home. When I returned in the evening, my mother was trembling on the sofa, the house was open, the attendant had packed and left her alone without even calling me. My mother, who has a balance problem, could not even walk to the bathroom. She sat, desperate to go to the toilet, and not sure how to manage it. Because of her dementia, she could not use the phone right next to her. She was totally traumatized, and I didn’t dare leave her side at all for some days. Even after I managed to find a replacement a week down the line, I’d peep in every hour, much to the annoyance of the replacement attendant 🙂

What worked finally was my realizing that the attendants refused to believe my explanations of my mother’s medical condition; they thought I was making excuses for my mother. They would only believe the explanation if they got it from more authoritative sources, or if I could demonstrate that my mother was facing genuine problems in comprehending things and remembering them.

I’ve described the turnaround in earlier blog entries earlier (for example, see this link), but briefly, I started using pamphlets and pictures and videos for one part of the explanation. I had started “playing games” with my mother; the attendants saw my mother struggle with the same simple six-piece jigsaw every day, and began understanding the nature of the problem.0

What was really effective in making the nature of dementia clearer to the attendant was taking the attendant to a dementia day care so that she could see other patients and how the day care staff treated them. A one-hour trip was all it took for dementia to be seen as a medical problem, and not “old age”, because the attendant got to see patients in various stages and had an indication of the progression.

I could have saved myself a lot of heartburn had I thought of this method earlier. The shift in the attitude of the attendants was dramatic once they genuinely accepted the problem; they were less on the defensive, less hostile, quicker to recover when my mother got agitated, more empathetic and tolerant.

Now, my mother is bedridden. The required caregiving skills are those needed for bedridden patients PLUS the ability/ empathy to understand what my mother wants because my mother cannot express what she wants.

Finding a suitable paid care staff and retaining such a person is very challenging, and now that I have a good attendant, I make sure she is comfortable with her own living arrangements, and has enough space and freedom.

For example, I get her newspapers and magazines so that she does not get bored. (We don’t have a TV because that disorients my mother). This attendant, in turn, is friendly, cheerful, competent. She is very alert on anything that could be wrong, and calls me in and suggests a doctor trip if she spots anything suspicious. She sits in when the doctor comes, and is encouraged to ask him questions directly about any doubts she has.

But life is not perfect 🙂

For example, when the attendant takes leave, typically because of emergencies at home, major illnesses and deaths–which means, I or hubby end up doing full-time caregiving. But I do not try to get another attendant instead; there are many reasons…

For one, this is the first attendant my mother has never complained about. Perhaps that is so because I took very active steps in training her before she met my mother (the trip to the dementia day care center).

Then, if she  faces an emergency, my refusing permission is pointless. She will go, whether or not I give her permission. And how can I expect her to do a good job of looking after my mother if she is tense or frustrated?

We have tried to get substitutes to help us tide over this attendant’s frequent absences. In her early days, we would ask the agency for a substitute, and never got one. Waiting all day for a promised replacement only adds to frustration. We also tried another agency and once got a day-shift trained attendant for ten days.

This attendant was a young girl, barely eighteen, who would land up at the dot of nine, and pack up her bag at 4 p.m. and watch the clock for it to be five so that she could leave. She was okay when it came to feeding my mother, but had no idea how to change a soiled diaper. We tried teaching her, but she wasn’t exactly a keen student. Though we gave her a face mask and gloves and all the required paraphernalia, she would look disgusted and wrinkle her nose at the diaper change time. If we were not watching, she would keep postponing it, and even at the end of ten days, she could not quite manage it herself. Worse, my mother would get unhappy and uncomfortable at the attendant’s visible disgust.

Getting a trained attendant who emotionally understands and accepts and can cope with dementia is not easy, and my personal experience has been that most “trained” attendants need orientation and additional training for dementia and also for the specific patient’s likes and dislikes. As narrated above, we learnt that we needed to generate our own training/ orientation strategy and material, and locate authoritative sources to orient and convince attendants. In the earlier days, I was not clear of what to expect and how to monitor that the attendant was doing an adequate job in terms of maintaining patient hygiene and so on, and I ended up developing checklists for these also, to monitor closely for the first few weeks at least. All these were arrived at by hit and trial.

We don’t all have to learn this the hard way, do we?

As I now try to figure out what can help family caregivers get and retain good attendants, I would really like to hear of the experiences of others. My interactions with other caregivers  has given me some idea, but I hope that those of you who are or have been involved with dementia home care will share your thoughts and opinions with me. Please do feel free to write to me or leave comments, whatever. (Edited to add: The survey is now closed, and the link has therefore been removed)

Maybe this sharing will help in evolving something that can be useful to all of us.

Edited to add links to recent, relevant entries and resource pages:

• A two-part blog entry discussing trained attendants: Trained attendants and respite care for dementia: Observations from India and Trained attendants and respite care for dementia: Sharing suggestions for volunteers from India
• Blog entry on how attendants are a major area where family caregivers need help: Where dementia caregivers in India need help
• Detailed resource page for persons who want to use trained attendants effectively: Using Trained Attendants for Dementia Home Care

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