It's No One's PHALT - The Guessing Game of Need

Life is a train of moods like a string of beads; and as we pass through them they prove to be many colored lenses, which paint the world their own hue, and each shows us only what lies in its own focus. – Ralph Waldo Emerson

As care providers, we do not just naturally learn to speak dementian. It can be a difficult process to decipher what our care partner is trying to tell us. As caregivers, it can also be a challenge for others to understand our own emotions. One familiar acronym, HALT, has been used in countless counseling settings. H.A.L.T. stands for hungry, angry, lonely, and tired. This acronym can be a guidepost to deciding what we need to do to address the discomfort our care partner is experiencing. If we can figure out what is needed, we can attempt to fulfill that need and provide support and comfort in the process.

H, or hunger, can be self-explanatory on the surface. We can provide a mid-morning or afternoon snack to supplement gaps between regular mealtimes. Many times, a dementia client will not ask for more food even if they are hungry. This could be for many reasons; sometimes they cannot find the right word or cannot think of the item they would like. When we ask if they would like more _______ (whatever), the answer is frequently yes! In addition, we often confuse thirst for hunger. Offering a variety of drinks is tantamount to enticing the consumption of additional fluids. Most of us do not drink the same beverage all day every day. The temperature of the liquid can also be adjusted—warm vs. iced tea; etc. Popsicles can be an enticing afternoon snack and count as liquid, too, as can various fruits (think watermelon and vegetables like cucumbers and lettuce.)

Gudrun Zomerland, a marriage and family therapist, would take this definition of hunger even further: “…But hunger can also point toward emotional needs: hunger for attention, for comfort, for understanding, or for companionship” (Zomerland, 2014).

The need for attention causes much angst in many households. A primary caregiver may feel he/ he/she gives enough attention by fixing breakfast and dinner, offering beverages during the day, serving a snack in the afternoon, and helping with exercise and repositioning. But the caregiver may not realize that asking/prodding/begging is not perceived as comforting. In education, this is labeled negative attention. Attention to do something you should already be doing. And when delivered with a curt tone of voice, it can be perceived as downright nagging, but it’s still attention.

Most couples used to smile, laugh at each other’s stories (even though they may have memorized them all), listen to music from ‘the old days’, watch movies together, go to social events, and visit friends and relatives. Now, since dementia reared its ugly head, they may not leave the house together except to go to doctor appointments. Where is the comfort in that?! Talk about anxiety!! Time needs to be taken to look at photo albums, listen to music, watch a show or movie together, hold hands, play a simple game, sit outside and listen to the birds or watch the squirrels. These activities provide the togetherness that brings comfort and attention everyone desires.

The variety and novelty of new activities and experiences should not be ignored. These slight changes to routine can stimulate responses we might not have anticipated. During spring break earlier this year, I decided to take my eight-year-old niece with me to visit her grandparents at their house. We would only spend a couple of days. My niece was extremely excited. At least once a year, this set of grandparents came to visit HER house, and this was a switch to travel to see them at THEIR house. Gracie became the light in dad’s eyes. He watched what she did, took fewer naps, ate more, and even played games with us!! We played Don’t Break the Ice and Don’t Spill the Beans and they both enjoyed it immensely. During one game, dad’s sense of humor and cleverness surfaced unexpectedly. While playing Don’t Spill the Beans, he picked up his entire tray of beans and placed it on the bucket. We ALL laughed! Mom and the caregiver had just assumed that dad could not play a game or, more importantly, would not want to. Not so! The novelty of his granddaughter’s presence and the games won his attention and concentration.

The hunger for understanding is felt on both sides of the care giving situation. Dad cannot always indicate what he needs, and mom gets frustrated at not being able to figure out what is bothering him or what he wants. Frustration from both sides can lead to ignoring or anger. In the book Alzheimer’s from the Inside Out, Richard Taylor (2007) wrote about his need to be understood and why he resisted certain “requirements” his caregivers put upon him. Taylor, an Alzheimer’s sufferer, was indignant that he should not be told to take his pills. He had pills to take at various times during the day and would refuse to take them. Why? It caused his caregivers to be upset with him, but he wanted to know why, if these pills were so important, didn’t they take them? And why should he take the pills if he didn’t notice any difference when not taking them?

My father used to have to go for B12 shots. This was quite a hassle to get to the military hospital—get ready, then into the car, drive there and wait, not to mention the painful experience of getting the injection. This went on for several weeks until his blood tests showed acceptable levels of B12 in his system. But he did not complain or become agitated about going. The hospital was always buzzing with activity. There was so much to see, so many new sounds and voices, and voila—attention. The focus was on him, not the chores or the burden of his care or what still needed to be done around the house. He needed to have his needs for novelty and stimulation addressed. Disperse music throughout the day. Provide some variety and novelty in every day—even sitting outside can be a diversion of new experiences. We all have a need to escape the boredom of our routine on occasion.

A stands for anger. In the IWD, anger can also be an expression of discomfort. My father intensely disliked getting changed into pajamas in the evening presumably because he would feel cold. As a result of this (and having to leave his chair to stand up and down, etc.), he would become extremely agitated and aggressive to the point of hitting, grabbing, or even biting. One strategy that proved effective was using a space heater in the room where he changed. Another was warming up his pajamas, either in the dryer or in the microwave for a minute if there were no metal snaps on them. We also adapted pajamas so they fastened easily with Velcro in the back.

It is suggested that when aggression occurs, whatever activity the care provider is doing should stop. The client needs a time out, or time away from the demands of the activity. If they are mobile, add physical activity. Walking, stomping, channeling the hitting into a pillow or squeeze ball could be tried.

Anger can occur when we feel we are not in control of a situation. Zomerland (2014) writes that anger is “always a form of perceived helplessness or powerlessness”. We might not know the exact reason for the care partner’s anger, but we can modify the task we feel needs to be done by performing it more slowly, at a different time, in a different order, or discontinuing the task until another occasion. Time of day can also make a difference. We will discuss this in more detail under T.

L is for lonely. Dementia clients may feel isolated and alone. Depression is very often linked to dementia and may even be a manifestation of it. Not changing or leaving surroundings very often can exacerbate feelings of loneliness.

I volunteered with the American Red Cross on an oncology ward and orthopedic settings for many years, starting at age 16 as a Candy Striper. How I loved spending time with the patients; well, most of them. The oncology ward had a nursing and orderly staff that seemed different to me. Most of the patients were receiving chemo treatments or recovering from surgery. It was a quiet ward in the evenings when I volunteered and there seemed to be limited interaction between staff and patients. In fact, it seemed to me the staff preferred working on charts and paperwork at the nurse’s station rather than assisting with patient care. I was bored with answering the phone and decided to peek in on the patients and say hi. One woman whose room was at the end of the u-shaped ward had several birthday cards in her room displayed on her tray table. (Patients were not allowed to have flowers). I asked her when her birthday was, and she said sadly, “Today”. “Today!” I exclaimed. “Happy birthday!” She said thank you and mentioned it was not the best place to be on your birthday. After chatting with her for a while, I returned to the nurse’s station and asked if anyone was aware that it was Mrs. H’s birthday. Some responded with a grunt, others shook their heads. I asked the head nurse if we could sing happy birthday to her, and she said they were busy. I wondered if this was typical to the ward; perhaps the staff was depressed or doesn’t bother because so many patients are very ill. New to the ward, I pleaded with her (listening to her say ‘we don’t have time for that’ and, when I would not give up, ‘only if you can get people together’) and managed to round up 5 or 6 staff people. We went to Mrs. H’s room and sang to her, and she had the most beautiful smile while we were singing! It did not matter that we sounded terrible, it mattered that we were there and recognized her special day. The spell of loneliness can be broken by genuine caring toward another. This small gesture was perceived as an incredibly special gift.

Mr. F was lonely, too. On the oncology ward because he was neutropenic, I had yet to see a visitor enter his room. I asked how he was doing, and he said he was sad. He hadn’t heard from his sons in a while, and they probably didn’t even know he was in the hospital again. He was afraid he did not have a legacy. We talked at length, and I would come and sit in a chair across from his bed, even while he slept. He said all he wanted was for someone to sit beside him on the bed. I could not do that, I explained, it was against the rules, but I did sit close to him and visited. Perhaps it helped. Many of these patients felt they did not have much time left to live. I gave them some of mine by just being with them for a spell.

Everyone gets down when there is a lack of stimulation, a lack of purpose in our lives. Stir things up!!

T is for tired. Dementia clients may not sleep well. Vascular dementia clients may have exacerbating conditions such as sleep apnea. If a client has not napped as much as usual during the day or has slept too long, this can be a contributing factor to difficult behaviors including refusal or combativeness. A regular schedule helps a client anticipate what activity comes next and is comforting to them. We all have our routines and know how upsetting it is when something interferes. My father would remark in general about having a caregiver come to the house in the morning and in the evening by stating, “I’m tired of all these women.” Zomerland (2014) states that tiredness can also result from feeling overwhelmed. Dementia clients can become tired of being dependent on others for their care. They can be frustrated with constantly being told what to do. One can be tired of the situation as well as physically tired, of course.

The H.A.L.T acronym is not complete; however, in helping us decipher what our client needs and is trying to tell us. One letter and category is missing. I would add a silent P to the beginning of this acronym.

P stands for pain. Often, we may not sense our client has pain when we do not see any physical evidence, or they have not expressed this pain to us. We can ask, “Do you hurt?” and the follow up of “Where?” but might not get an answer. Vascular dementia clients may complain of pain everywhere. It is believed this may be due to central sensitivity, the brain’s response to repetitive input from overactive nerves firing continuously and interpreted by the brain as pain. Lewy Body Dementia clients may experience delusions or hallucinations that appear to cause physical pain or intense fear. The response to fear is one of emotional discomfort or pain for many individuals with dementia.

The resulting acronym, including the P for pain, is P.H.A.L.T. I like to say this as ‘phalt’, or, phonetically if you will, fault. It is not the care provider’s fault that we do not speak dementian in every instance when our client is frustrated, overwhelmed, anxious, or uncooperative. But we can run down the list of possibilities and try to decipher the clues. Eliminating some issues can point us to the remaining issue being communicated to us. What is left might be what we need to address most.

Sources:

Schaper WH. Don’t Break the Ice. Robbinsdale, MN. Schaper Toys, 1968. Board Game.

Schaper WH. Don’t Spill the Beans. Robbinsdale, MN. Schaper Toys, 1967. Board Game.

Taylor R. (2007). Alzheimer’s from the inside out. Baltimore, MD. Health Professions Press.

Zomerland G. H.A.L.T. (hungry, angry, lonely and tired): a self-carer tool. Body, Mind. June 7, 2014. Retrieved at https://healthypsych.com/h-a-l-t-hungry-angry-lonely-tired-a-self-care-tool/