Sometimes, dementia care is best done by professionals

MOSES LAKE — Dementia is hard on the person suffering from it, but those who care for them have a tough row to hoe as well, said Karisti Cox, living sales specialist at Brookdale Hearthstone and the organizer of the Walk to End Alzheimer’s. 

“Often, (dementia sufferers) are very busy bodies,” Cox said. “They will be up all hours of the night doing all different things. (It) could be packing, could be peeling oranges, could be organizing their magazines. They're just they're very busy bodies. And the caregivers themselves have a very difficult time getting the proper sleep and the proper care that they need. So that's a consideration, because if the person that is the caregiver is not able to tend to their own health needs, they can never truly give the type of proper care that the person who has dementia really needs.” 

Dementia used to be referred to as “second childhood,” and there’s a tendency for caregivers to treat their loved one like a child, but that’s the wrong approach, Cox said. 

“They're not children,” she said. “They may act like they don't understand what you're saying because their actions don't follow along with the cues that you're giving, but that's that's all too often not true. Most of the time, they do understand what you're saying. Their bodies are just incapable of (responding) in the proper way. Just because they’re not interacting with you doesn’t mean they don’t hear what you’re saying.” 

The person’s capabilities may change from day to day as well, Cox said.  

“What that caregiver knows is ‘Yesterday when I asked Mom to sit down and read a book she sat down and she thumbed through that thing, and she had a great time. Today I'm asking her to do that and she's looking at me like I have three heads on my shoulders,’” Cox said. “It isn't that she didn't process what the daughter wanted her to do. It's the fact that (her) body is not following along with what the daughter said.” 

The other thing to remember is to keep it positive, Cox said. A person with dementia is kind of a time traveler; which part of their memories they live in will vary from day to day, or even hour to hour. Sometimes they’re one age in their minds and sometimes another.

“I'll never forget visiting with a man (in his 80s),” Cox said. “We were talking about his brothers, how his brothers were mean to him all the time. And I said, ‘How old are your brothers?’ ‘Well, the oldest one is 21, and then my other brother, he's 17. So you can see that they get the better of me all the time because they're older than me.’ (In the) moment that he's living in, he's got anxiety because he's afraid of his brothers that are going to beat up on him.” 

The time they’re living in is very real to them, Cox said, so correcting them will only make things worse. Rather than tell them the person they’re looking for has died, for example, Cox recommends saying something like “She’s not home right now” or “He’ll be back soon.”   

“Because their brains are not able to comprehend the full truth, there's no point in giving them the full truth,” she said. “It's kind of like the concept of Santa Claus. You could tell the child that there's no Santa Claus. Of course, that would be the truth. But really, what good does that do if it only breaks their heart?” 

Sooner or later, a caregiver often reaches the point where they can’t keep up by themselves. About 60% of people with dementia finish their lives in nursing, hospice or long-term care homes, according to the Centers for Disease Control. The decision to put a loved one in care, however, is never an easy one. 

“You're not failing your loved one by letting someone else care for them,” Cox said. “In fact, I would say quite the opposite. (Caregivers) just don't realize that (the patient) really could be getting better care by someone who understands the disease … So many people will say, ‘My mom always said she never wanted to go (into care) and she made me promise that I would never do that. That is a promise no one should ever make. Because the reality of it is, that person who is saying that (doesn’t) have a clue as to how tired that can make someone. And when you're tired, you're not able to make good decisions and say the right things.” 

People with dementia typically have it for seven to 10 years, Cox said. The first two or three years of that time come before the patient is even diagnosed, she said. 

“Once you have the diagnosis, you may go another two years before things really start to get challenging,” she said. “So, by the time a family says we can no longer do this anymore and we really do need help, once they bring a loved one into care, that person isn't normally with us for more than three years.” 

The end stages of dementia aren’t generally pretty. According to the Mayo Clinic, the person suffering from dementia will generally lose their ability to communicate; require assistance with personal care like eating, dressing and using the bathroom; and lose their ability to walk without assistance, or even sit and hold their head up. By that time, a caregiver is usually ready for some help, Cox said. 

How much help depends on how much the patient can understand or control, she said. Some people do fine in traditional assisted living. But if they tend to try to leave – called “eloping” – they need a locked facility. Some, whose physical abilities are too far gone, may need round-the-clock nursing care. Whatever stage they’re at, Cox said, they should be around other people with the same capacities and tendencies. 

“That's when it's time to, you know, keep that person's dignity intact and take them to a place where they are going to be where other people understand them, and the other residents are just like them,” she said. “They may not be able to speak to you and tell you that they understand what's going on. They may not remember what you said to them, but they remember how you made them feel.” 

    When a loved one’s dementia gets to be more than they can keep up with, it may be time to consider professional care.