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I'm helping my husband care for his Korean mother who has dementia/paranoid schizophrenia. I'm a stay-at-home mom in my mid-thirties and have a two and four year old. Grandma (my kids and I call her "Grandma") lives with us. She only speaks a handful of words in English and my husband doesn't speak Korean. (They speak Korean-glish). I want to give her the best care I can, but there is so little I know about her disease and communication with her is so limited. I don't even know where to start.

I'm wondering if anybody can recommend a book that will help me understand dementia and/or schizophrenia and give me tips for taking care of Grandma? We're not sure of her age. We think she's in her mid 70s. She's self sufficient in many ways--she does laundry for the family, cooks for herself and bathes herself. But I think her condition is deteriorating. She never leaves the house (unless it's to get cigarettes), stays in her room for much of the day staring at the ceiling or sleeping, rarely changes her clothes, doesn't play with the kids--I think because she doesn't feel comfortable speaking with them in either Korean or English-- Although, she smiles with them and takes pleasure in their company, especially my two year old daughter's.

I make dinner for her, but it has to be mushy because she doesn't like her dentures, and my soft Korean food repertoire is limited. She cooks breakfast and lunch for herself but it's just rice and maybe soft cabbage/onions. I used to make oatmeal or eggs for her but she wouldn't eat them. She also won't eat the Asian or American foods in the pantry or that I buy for her to cook with, and when I take her to the store to shop, she will only get one or two things. She's overwhelmed and doesn't like being around people. It seems like she doesn't eat things in the house because she's trying not to be a burden or intrude. But I might be wrong. Maybe it's because she doesn't like them. Or can't eat them. Who the heck knows. But I want to do better about getting more nutritious foods into her.

I used to get very frustrated with the fact that she would never ever talk or give an opinion, not even in Korean. Was this the language barrier? Her illness? Her medication? Her behavior? (My husband said she was never much of a talker...although apparently she had a temper back in the day!) Now I chalk it up to a combination of all of these things. But again, there is so little I know of her illness. I want and need to know more so that I can do better with her. I know I can do much better. I just don't know how. I've tried having her do crafts, or projects with the kids, or cooking and it just seems to fall flat. I feel bad pushing her to do things she doesn't want to do and don't know where the line is where I am intruding on her sense of self, or doing what is in her best interest.

The only routine that sticks that will get her out of her room is doing laundry and washing the dishes, drinking coffee and smoking (outside).

None of my contemporaries are in a situation in which they are caring for an elder yet, so I don't have anyone to discuss these things with. And I haven't heard of anyone caring for an elder whom they don't share a language or history with. Still, if you can point to any resources, tips, or advice that have helped you in your journey I would appreciate it so much.

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Thank you JessieBelle for your encouragement and kind words. I'm sorry it's taken so long to respond to your comment. (Just to complicate matters--we're moving in a few weeks--to Korea--so life has gotten a little busy!) Reading your comments was a comfort though, especially the part about the difficulties of mental illness on top of dementia. Little that I've read seems to really match the symptoms that Grandma is experiencing so it's been a little frustrating and confusing. I keep wondering if I'm looking in the wrong places for information so it's helpful reading that you've experienced similar difficulty finding answers...and that there are no "easy" answers (I keep looking for them though!) Grandma suffers from anxiety as well, so there's all that on top of everything else.

We'll see what Korea has in store for us. (To answer your question, my husband does not speak Korean. They only communicate in their English-Korean interlanguage.) We'll be there a couple years for my husband's work. Grandma is not excited about going and I doubt it will affect her situation too much. She doesn't speak Korean even when she's with Koreans. But hopefully, we will learn things about her language and culture that help us understand her more and better interact with her.

Thanks again, JessieBelle for your suggestions and support. I really appreciate having a "listening ear".
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You are a kind and thoughtful young woman. There is so much written about dementia and so much written about mental diseases such as schizophrenia, but little written to guide people who are facing a combination of the two. It sounds like your MIL is a good spirited person, and I am glad she is receiving your help. One thing I wondered is if your husband speaks Korean, or if it is only a mix. And I wondered if you would be open to learning Korean if your MIL will be with you for a while.

Does she like music? Many people with schizophrenia do. You might find that she is creative with it. Does she like painting or clay sculpting? Not knowing her history, it is hard to figure what might help her personally. Your husband should have some ideas.

Which medicine does she take for schizophrenia? Some of them make a person zone out, so they lose interest in things once enjoyed. Some people with schizophrenia stop taking the drugs because of the loss, but usually with bad consequences.

I understand a good bit of what you are dealing with. My mother is not schizophrenic, but has a serious anxiety and mental instability that goes with her dementia. Sometimes I read the things about people with Alzheimer's, but I have a hard time relating to it, because it is written about people who were not mentally ill before the dementia. With my mother, I play it a moment at the time, but realize that all can change in the next moment. Life can be cruel in compounding the problems of a mentally ill person with dementia.

I don't think there are any easy answers except to do the best you can and to know that it is not you that is at fault for not finding something that clicks. Your MIL is adjusting to a new situation with two debilitating conditions. Just let her know you care. And put some plans together about what you will do if emergency situations arise. Right now it sounds like you are doing a good job and I know she appreciates it.
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