This is the first of a three-part series on the effects of dementia on elderly people and their families. First published in MidWeek June 5, 2019
Edward Sakai never married, but he was a good and loving uncle. His nephew Glenn Nishida remembers, “He was the nicest man ever. He was our favorite uncle. He would go all out for us.”
That meant huge, fancy Easter baskets for the kids, and the best Christmas presents.
Sakai’s big heart included everyone. When his parents got old, he stepped in and took care of them.
Uncle is 87 now and has advanced dementia. But Glenn and his wife Joan didn’t know that until one shocking day in 2015. Glenn was in the habit of calling Uncle to say hi and just to check up.
“Everything’s all right,” Uncle would say, “I’m fine.”
One day Uncle missed a doctor’s appointment. Glenn called and asked a neighbor to check on him. She reported back—“He’s in his car.”
Okay, Glenn thought, so he’s going to be late. Hours later, Uncle still didn’t answer his phone or call him back. Nishida asked the neighbor to check again.
He was still sitting in his car. He’d been sitting there for eight hours.
Glenn and his wife rushed to Uncle’s house and what they found horrified them.
“He had no electricity in the house. Nothing was on. And he was slouched in this hallway. My god, we didn’t recognize him.”
Uncle was emaciated. It looked like he hadn’t eaten for weeks.
“His hair was down to his shoulders, he hadn’t shaved. He stunk,” Glenn recalls.
When they took him to the emergency room the doctor told them Uncle would have died within a few hours had they not found him when they did. He spent six weeks in the hospital and another seven at rehab.
And then Glenn and Joan did something that changed their lives. They decided to bring Uncle home with them. They would take care of him.
The “honeymoon period” lasted about a week. Uncle, they learned, would get belligerent, verbally abusive, even violent, when they asked him to do things. And his memory had deteriorated so badly he had to be reminded constantly, which caused more tension. Full-time caregiving, they realized quickly, was not going to be a piece of cake. Uncle was just not the same person they knew.
They adjusted. Joan kept her job at the Queen’s Medical Center, but Glenn quit his. There was no way Uncle could be left alone for even an hour.
Glenn says his learning curve was slow and painful, but learn he did.
“Just answer their questions, no matter how many times they ask you,” he says. “Try to eliminate the words like ‘Remember?’ or phrases like, ‘I told you already,’ or, ‘how many times do I have to tell you?’”
The answer to that is obvious-- as many times as necessary. People with dementia just can’t help themselves.
Other tips from Glenn:
“If they do not want to take a bath, one day is not going to hurt them. It's the same for food. If Uncle says he is not hungry I don't argue anymore.” By happy accident, he discovered that if he chops everything up and serves it in a bowl, Uncle eats everything.
The “not arguing” thing was especially tough. But one day an exasperated Joan said to him, “Why are you fighting with a demented person?” And he realized she was right. There was no point to it. “But it’s hard,” he says, “really, really hard.”
Now, instead of saying, “Time to wake up,” which may trigger rebellion, they’ll say, “Uncle, come and have your coffee.”
They say, “Your toothbrush is the blue one,” instead of “Time to brush your teeth.”
They’re tricking him, Glenn acknowledges, but it works.
Glenn was Uncle’s main caregiver for years. He’s dealt with anger and resentment—after all, his life changed drastically when they made the commitment to Uncle.
“Being a caregiver is the hardest thing I’ve ever had to do.”
He did it with dedication and compassion but it wore him down until, finally, and fairly recently, they discovered that Uncle was eligible for VA benefits which would pay for five days of day care a week. It was a huge relief.
Glenn says in hindsight, he would try to find support earlier. It might have sped up the learning curve.
If you are taking care of an elderly person with dementia or are considering it, make sure you find a good geriatrician who will be able to hook you up with a social worker or caseworker.
For much more information check out the Alzheimer’s Association- Aloha Chapter, at https://www.alz.org/hawaii. The website has an enormous amount of information and support.
The most important pieces of advice he can give?
“Take care of yourself. And-- you have to realize it’s okay to get angry and frustrated—without guilt. All we can do is our best.”
Ariana Wear says:
I’ve heard from others that it’s one of the hardest things for a family to go through. Thank you for sharing the insight. I suppose it’s similar to tricking your kids by eliminating negative options. I will share this because I’m sure this will help impact many people who read it. Thank you
Glenn Nishida says:
Thank you so much @Cece Bradyz
This is all too familiar to me. My grandpa (from my mom’s side) died when I was 17 and as a result, my grandma, who had already been ill, basically crashed. Among other things, she started suffering from dementia, which during the years got worse and worse. She lived in her own home, and would have been in dire need of a place in a nursing home or the like, especially when time went by, but as my parents and I were living right next to her, she wasn’t eligible for a place in a communal housing and we couldn’t afford a place in a private one. For 10 years I and my mom took care of her, which meant that we, as whole a family, could never do anything together anymore, since either I or my mom had to stay home looking after grandma. Eventually she got a place in a nursing hospital after she fell down and broke her hip, and we couldn’t take care of her at home anymore. She spent 5 years there until she passed away at the age of 78.
And now the same is happening with my other grandma, from my father’s side. She is 92 years old and she was diagnosed with Alzheimer’s a year and a half ago, and now she’s in an old-age home where they also provide medical care for her. She doesn’t recognize people all the time anymore; for example, last time my parents visited her, she did recognize my dad – her own son – but not my mom.
The sad thing is that even though I would like to remember the good times with my grandparents, when I think of them, the first thing that comes to mind is how scared I was every time I got home from school and went to see how grandma was doing. I never knew what I would find. More than once I found her lying on the floor, as she had fallen and couldn’t get up. Once I found matches next to a coffee maker. She had tried to make coffee and had tried to set fire to get the water hot. That was scary! Even worse was that in the early stages, my grandma understood that sometimes she was doing and saying crazy things and it made her sad and ashamed. That’s why I hope that when I die, I go quickly and with a sane mind. I have huge respect for people who are taking care of their loved ones suffering from these diseases. I don’t think I could do it again.
Cece Bradyz says:
You and your wife are angels and your uncle is blessed to have such caring family.
I too am a caregiver. I live with and look after my mother who is 90 . She suffered a stroke 4 years ago and as the years go by her short term memory is getting worse. It is the hardest and most rewarding job a person can take on. I feel blessed that she is still with me. When I get frustrated with my situation I think about all of the people out there that would give just one moment to be able to see, kiss, hug or be with either of their parents…it helps to put things in perspective. The hardest thing is to take care of your self. Keep up with your friends and your faith they are two things that will always be there for you.
Thank you Jade Moon!