Have you ever asked your care receiver what they need the most?

January 19, 2022

You have guilt. They have guilt. But, neither of you is talking to the other about those feelings. In fact, neither of you has talked about much of anything with regards to being a helper and being a care receiver or care recipient. 

I always remember the word, assume. When you assume, it makes an ass out of you and me. Ass/u/me. I have been an ass, quite a few times and not always by assuming. But, a lot of times, I have assumed, and I was so very wrong. Don’t let that happen to you. Assuming does cause misunderstandings. It does cause heartache. It can even cause hurt feelings.

How could my assumption be so wrong?  I made the best decision that I could. My heart was in the right place. I know this person. Why was it so wrong? Everyone does not think like me. Not everybody has the same wants or needs as I do. They don’t have my life experiences or the same goals that I have.  I’m perplexed. I’m a little sad. I feel a little unappreciated for my efforts. I am a little pissed.

Have you ever felt that way, you make decision, and it did not turn out as you had planned? It flopped. It was bad. It made more of a mess.

Not everyone has the skills of a family caregiver

The key is, “as you had planned.” You didn’t ask anyone else for their input. You didn’t ask your loved one what they wanted or needed. We assumed. The decision blew up and caused hurt feelings. We misunderstood. But we are not going to admit we were wrong. We will double down on our interpretation and beliefs. Hello, ego and pride. You can’t back down and admit you messed up. Even when the other person tries to clarify what they wanted … our stubbornness or rather our pride bows up and will not listen.

The ways that we know about something, or someone are:

    1. The things that we know for sure

    1. The things that we do not know

    1. The things that we think we know

Think about it this way. You are having a conversation and somehow your loved one tells you that they like flowers on the table. In your mind, they like roses because you like roses. You didn’t ask them what kind of flowers they liked. You assumed they liked roses and you bought roses for the table. Instead of getting the praise and acknowledgment that you think you deserve, you get a “those are nice.” In your head, you are going off. You say something like, “I thought you liked flowers for the table.” They respond, “I do, I prefer tulips because they are my favorites.”

You are the one that assumed roses. You did not bother to ask what kind of flowers are their favorites?

They may want different brands

You are sent on an errand to get loaf bread, peanut butter, coffee and milk. There are no brands listed and you didn’t bother to ask. Each of you assumed that the other knew what brand to get. How do you think that worked out? You got white bread, Peter Pan peanut butter, JFG coffee and soy milk. Why? Because that is what you use. Bad move. They wanted whole wheat bread, Jif peanut butter, Folger’s coffee, and 2% milk.

See what assumptions do? Everybody is mad. Each of you is blaming the other one for not “knowing” what to get. To avoid all of this anger, frustration and hurt feelings, take a minute to ask a few questions for clarification.

Communication and listening for understanding would have gone a long way in preventing this mishap.  Making assumptions is asking for problems in any relationship. None of us are mind readers.

We all make assumptions even when we don’t know that we are doing it. We view things thorough our own perceptions, and they are not always accurate. We have biases both known and unknown. We think that our experiences are the same as other people’s experiences. We don’t challenge what we think we know to be true. Maybe, we heard it and accepted it as true. It was not true. Check your facts from trusted sources. What if we are stuck using information from a past experience?

The “What if’s”

Hang on, what comes next are short, informational blurbs. Things to make you think. Things to help you understand.

What if the helper and the care receiver would communicate better? What if they could each state their needs and their wants while working together for the best outcome possible? If you cannot talk to each other without getting into a fight, maybe try writing it down on a piece of paper. Listen for understanding. Take 10 seconds to think or process before replying. State back to them what you heard and ask if that is correct?

As the helper or care giver, do you know how your loved one or care receiver feels? Give up your need to control. You are the helper. It is hard enough on the care receiver to admit that they need help. For them to realize that they are no longer independent is devastating.

Take a breath. Talk with them about the past, the present and even the future. Talk with them, do not pepper them with questions. As the dementia progresses, you will need to give them two choices, but at first, you let them decide. Offer to help the care receiver. Sure, they move slower, but take them with you to the grocery store.

If your loved one has been a giver their whole life, it will be hard for them to be the receiver. They are not used to receiving. It will be a learning process for them. Remember, everyone wants to be useful and feel useful. Imagine how you would feel if you could not do everything for yourself and you had to depend on someone else’s help. Will you be angry? Will you rant, rave and rage against help? Will you be open to receiving help, with gratitude? To realize that there are some things that you can still do for yourself. Our identities get wrapped up in what we do for a living or our role in our family life. Who are we if we are not a __________?

We all must answer that question. Be kind to yourself. You are loved, appreciated, and admired for who you are as a person. Not what you do.

The feeling of becoming or being a burden to our loved ones, makes all of us a little crazy. Almost all of us will help without a second thought, when needed. We do it and never think a thing about it. However, when it comes to us receiving help …that is a horse of a different color. Nope. We are not having it!

We all want our dignity to be left intact. We deserve that our dignity be left intact!

Helping or care giving is full of contradictions and even competing thoughts. It is the same for the care receiver. Mixed emotions abound. Can your personalities coexist?

Some caregivers are not hands-on caregivers

Some people are not cut out to be the “hands-on” care giver. They can make sure that you have “hands-on” care givers to help. They may provide support and help to the family “hands-on” care givers. As I have shared before, I am not the “hands-on” care giver type. I learned the hard way. By trying to do it for my mom. When it comes to personal hygiene, toileting, grooming or transferring, I am not the best person for that. I am not good at it. I could do other things such as, taking her out to eat, to the doctor, to the store or the mall. Do laundry, cook a meal, mow the lawn, pay the bills, talk with her and just be with her to watch TV and play Jeopardy. I felt guilty that I could not do it all. I love her and want the best for her. I had a full-time job, three boys and a partner. I did the best I could. I wished that I could have been there more for her and daddy. Daddy was her primary care giver, and he had both medical and non-medical care giver help a few days a week for a couple of hours. My brother and I could not convince him to get more help. Mama did not want to be a burden to any of us and told us to place her in assisted living when we needed to.  It was never about her being a burden. My mama was never a burden. Daddy was not having any of that and he kept her at home. He had modifications done to the house for wheelchair access and a roll-in shower with a large bathroom area.

Mama was a very strong and independent woman. Everyone in my family can say what they think. We can have discussions, disagree, and even work together. The one thing that we can’t do is read each other’s minds, not that we had to. No one was afraid to express an opinion. When she was diagnosed with MS, she soldiered on. We could always talk about what was going on and the MS. Over the years, she got weaker, and her legs got to where they just wouldn’t work, and she used a walker and eventually a wheelchair. She always did whatever she could still do. I am sure she was frustrated. I never heard her complain nor did I ever hear her say, “why me.” She always faced everything head-on and we moved forward. We adapted, modified, and kept on going. One of my mom’s favorite sayings was, “Do the best that you can do and forget the rest.”

While she had MS for years, she did not need any help until she was about 62 years old. She died at 65 from kidney failure. Other families are care givers for much longer and some shorter. You never know how long it will last. While it is hard and sometimes frustrating, it is also rewarding. You get to help someone you love when they need help. You don’t even see yourself as a care giver. You are helping your mom, dad, spouse, or partner.

If you want to avoid hurt feelings, anger, resentment, disappointment and miserable outcomes due to making assumptions, ask for input/options.

Don’t assume:

    1. That things will go exactly as planned

    1. That help is not necessary

    1. That you are being judged by what you do or don’t do

    1. That you know what your loved one wants

    1. That no one else can care for them properly

    1. That you know everything about your loved one’s conditions

    1. That your care receiver cannot tell how you really feel, they sense emotions

    1. That the care receiver will act the same way as your friend’s mom

    1. That they are not too bad, as they can have social conversations …different lobes of the brain control different functions

Take a look at this information from Mayfield Clinic


It shows you what part of the brain is responsible for what ….

Lobes of the brain

The cerebral hemispheres have distinct fissures, which divide the brain into lobes. Each hemisphere has 4 lobes: frontal, temporal, parietal, and occipital (Fig. 3). Each lobe may be divided, once again, into areas that serve very specific functions. It’s important to understand that each lobe of the brain does not function alone. There are very complex relationships between the lobes of the brain and between the right and left hemispheres.

Figure 3. The cerebrum is divided into four lobes: frontal, parietal, occipital and temporal.

Frontal lobe

    • Personality, behavior, emotions

    • Judgment, planning, problem solving

    • Speech: speaking and writing (Broca’s area)

    • Body movement (motor strip)

    • Intelligence, concentration, self awareness

Parietal lobe

    • Interprets language, words

    • Sense of touch, pain, temperature (sensory strip)

    • Interprets signals from vision, hearing, motor, sensory and memory

    • Spatial and visual perception

Occipital lobe

    • Interprets vision (color, light, movement)

Temporal lobe

    • Understanding language (Wernicke’s area)

    • Memory

    • Hearing

    • Sequencing and organization


In general, the left hemisphere of the brain is responsible for language and speech and is called the “dominant” hemisphere. The right hemisphere plays a large part in interpreting visual information and spatial processing. In about one third of people who are left-handed, speech function may be located on the right side of the brain. Left-handed people may need special testing to determine if their speech center is on the left or right side prior to any surgery in that area.

Aphasia is a disturbance of language affecting speech production, comprehension, reading or writing, due to brain injury – most commonly from stroke or trauma. The type of aphasia depends on the brain area damaged.

Broca’s area: lies in the left frontal lobe (Fig 3). If this area is damaged, one may have difficulty moving the tongue or facial muscles to produce the sounds of speech. The person can still read and understand spoken language but has difficulty in speaking and writing (i.e. forming letters and words, doesn’t write within lines) – called Broca’s aphasia.

Wernicke’s area: lies in the left temporal lobe (Fig 3). Damage to this area causes Wernicke’s aphasia. The individual may speak in long sentences that have no meaning, add unnecessary words, and even create new words. They can make speech sounds, however they have difficulty understanding speech and are therefore unaware of their mistakes.