Caregiver Corner

Traits of a Caregiver

There are more than 65 million people in the United States who are family care givers. The value of the care they provide is incalculable: financial value and contribution to the quality of life. Where would we be without family caregivers?

I am often asked why in every family one person becomes the family caregiver. Ask a care recipient who their caregiver is and there’s usually just one person named, although often, there’s an afterthought saying something like “they all help the best they can”.

What I have observed over the years is that there are specific traits in almost all long-term caregivers. They may have wildly different personalities and relationships with their loved ones but there is a constellation of traits that are always present. Read More.

Communication when Your Loved One who has Dementia

“You're wrong” ...
“Do you remember…?” ...
“They passed away.” ...
“I told you…” ...
“What do you want to eat?” ...
“Come, let's get your shoes on and get to the car, we need to go to the store for some groceries.”

“You’re wrong”

For experienced caregivers, this one may seem evident. However, for someone who hasn’t dealt with loss of cognitive function before, it can be hard to go along with something a loved one says that clearly isn’t true. There’s no benefit to arguing, though, and it’s best to avoid upsetting a senior with dementia, who is already in a vulnerable emotional state due to confusion.
Instead, change the subject.
It’s best to distract, not disagree. If an elderly loved one makes a wrong comment, don’t try to fight them on it; just change the subject and talk about something else – ideally, something pleasant, to change their focus. There are plenty of things not to say to someone with dementia, but if there’s one to remember, it’s anything that sounds like “you’re wrong”.

“Do you remember…?”

This is a sentence that one can just let slip out by accident, without even realizing it. Family caregivers will often ask a senior if they remember things. Of course, the answer is usually no, because forgetfulness is the most common symptom of dementia. Even still, it can be hard to avoid asking things like, “do you remember (family member/friend)?” or, “what did you do today?”. This can lead to embarrassment and sadness as a senior realizes they’ve lost memories.
Instead, say: “I remember…”
There’s no way to completely avoid talking about the past, and in fact, it can be a joyful experience for family members to reflect on old memories. However, try and change your approach to be sensitive to your loved one’s condition. When going over things that have happened, instead say, “I remember when we used to…” or “I remember when we went to that restaurant…” and so forth.

“They passed away.”

It’s an unfortunately common and heartbreaking occurrence: A senior will ask about a late loved one as if they’re still around. They may be upset that the person isn’t calling or visiting, or ask where they are. Telling them that their spouse, friend, or other loved one has passed away won’t help, especially in the later stages of dementia, as they will likely be extremely hurt by the news and may not even believe you. Even if you tell them the person has died and they believe you, they’ll most likely forget soon after, and you’ll have to repeat the process all over again.
Instead…
Unfortunately, there’s no answer for what to do every time this situation arises. It’s not unlikely someone with dementia will ask about a deceased loved one many times. In the case that they outright ask if the person has died, it may be best to be truthful. Other times, it may be best to change the topic of conversation altogether, as reminding them of their loved one’s passing won’t work and will only hurt them. You could offer another explanation for why the person isn’t around, or tell them they’ll see them soon, then gently change the subject. Every time is different, and the decision about how to respond is ultimately up to what you feel is best.

“I told you…”

Having to repeat things should be expected when caring for someone with dementia. You may find yourself telling your elderly loved one something, only for them to forget and ask the same question once again. In this case, saying ‘I already told you’ can be hurtful, reminding the person of their disease and confusing them further.
Instead, repeat what you said.
It will take patience and you may get frustrated, but remember that their forgetfulness isn’t their fault. Repeat whatever it is you’ve already told them, and say it just as politely as the first time. Otherwise, informing them that it’s something they’ve already asked about will just make them feel like they did something wrong, even if they don’t understand what it was.

“What do you want to eat?”

Open-ended questions like this can cause a lot of trouble for a senior with Alzheimer’s or another dementia. This is especially true if the question involves remembering something, such as, “what did you do yesterday?”, though in truth, even something as simple as “where do you want to go?” could cause distress.
Instead, say: “Would you like to eat some fruit?”
If you’re going to ask a question, try to form it in a way that can be answered with a simple yes or no. Avoiding open-ended questions will take the pressure off your older loved one, as they won’t be forced to try and remember something they can’t, or make a decision.

“Come, let’s get your shoes on and get to the car, we need to go to the store for some groceries.”

This sentence contains a lot of commands, and someone suffering from dementia won’t be able to process information at the same rate as you. This can lead to confusion. Try to avoid long sentences.
Instead, go one step at a time.
Use simple language (but don’t infantilize), and use shorter sentences to break it up into single-step commands. For the example above, you could say “Let’s get your shoes on.” Then later follow with, “let’s go to the car now,” and so on.

“Her dementia is getting worse.”

There are things you shouldn’t say to someone with dementia, but also things you shouldn’t say about them. Most importantly, never talk about a senior in the same room as you as if they aren’t there; just because they may be silent doesn’t mean they aren’t listening. Even if they’re not responding to the things you say, it’s best to assume they can understand when you’re talking about them.
Instead, leave the room.
Simply leaving the room to discuss the senior or their condition is best. This avoids causing them pain by speaking as if they’re already gone, even though they’re still around.

If you’re caring for someone with dementia, you know it can be very frustrating. There are so many conversations that seem to be on an endless loop of you repeating the same thing over and over again and your loved one failing to respond or getting agitated. Caregivers of people with dementia report this is one of the most difficult aspects of their role. You can begin by making a commitment to stop using expressions that increase agitation:

You’re wrong.
Do you remember?
He/She passed away.
What do you want to eat?

Think about it. How many times do these expressions pass your lips? They’re a basic part of communication in most of our lives, but they are triggers for people with dementia and shouldn’t be expressed. It takes reminding oneself, but you will get into the swing of it. Remember why you’re providing care for someone you love. Not to ensure that they’re fully aware of the facts of each situation, but to feel safe and loved. The rest doesn’t matter.

So, if they say something wrong, don’t try to convince them of what is right, just change the subject to something pleasant and move on. Don’t ask them to remember things, they can’t, it frustrates them. Just give them the information you want to share with them. So, instead of asking, ”Do you remember John Harvey?” get to the point of what you want to communicate. “I saw John Harvey today, who used to live across the street. He said to say hello.” You’ve shared the information you wanted to share without your loved one feeling challenged to remember something and you’ve provided some information that might jog his memory to enable him to share the experience.

When we hear sad news, like the passing of a loved one, it causes pain and sadness. When you don’t remember having gotten the news of the passing, each time you hear the news it causes pain and sadness. There is no point in providing this information over and over. Your loved one can’t remember the news. There is nothing they can do with the information except feel sad. Prolonged sadness will lead to anxiety and frustration. This is the exact opposite of the feeling you want your loved one to feel. So, again, change the subject. When they’re demanding to see someone who has passed you can share a memory you have of the person or change to an entirely different topic. If they can’t move to a new topic, you can just say “He’ll be by later.” Once there is an answer, the question is usually dropped and along with it the frustration and agitation. Your loved one can relax for a bit. They will revisit the question, many more times, but if you are prepared to accept responsibility to divert the conversation to something more pleasant, it will be a better experience for both of you.

The last tip on communication is to remember to break up information and requests into small bites. Don’t string together a list of things that need to be accomplished before you can both get out the door to go to the park. It won’t be the pleasant day for which you planned. Instead, in your mind know the list of things that have to happen before you can get to the park and one at a time instruct your loved one about what needs to be done. “We’re going to the park.” “Go get your shoes.” “Put your shoes on.” “Get your coat.” “Put your coat on.” “Let’s walk to the car.” “Get into the car.” “Put your seat belt on.” “I’m so glad we’re going to the park.”

If you are caring for someone with dementia and can use some support, contact us and ask to speak to someone is the Respite program. There is respite, counseling and support groups that may be helpful to you. 203 785 8533, option 4.