Coping with Dementia from Long Distance

August 13, 2018 8:58 PM

My grandma is nearing 90, and increasingly suffering from symptoms of dementia and trouble hearing, along with generally frail health. I'm ~7000 miles away but still struggling with this. How do folks cope?

I've mentioned my grandmother on here previously. SHe's come to visit from Thailand a few times over the past couple of years , and every time mom and I wonder if this time will be the last. Grandma is now quite paranoid, and her fears and sense of persecution are causing mom and I a lot of emotional distress.

My coping mechanism has basically been quiet withdrawal, especially if mom talks to grandma on the phone. These are unpleasant conversations even from a couple rooms away, full of mom yelling to be heard, and constantly repeating herself. Grandma, meanwhile, struggles to understand what's being said and has more than once sounded very close to tears, if not actually crying, it's honestly hard to tell.

I feel guilty about my withdrawal. I do my best to support mom before/after any conversations, and listen to her if she has to vent. I don't really get a lot out of talking to grandma myself, due to a combination of hearing loss and my own lack of great Thai language skills.

Mom has mentioned that some people she's spoken to suggest that grandma would be a lot happier here. I'm not sure how I feel about that, I have a visceral fear of seeing her decline up close, more than I already have. At the same time, I worry that she will pass on quietly in Thailand one day, and nobody will be there, or… This is text-book catastrophizing, of course.

There's a lot of complicated drama around mom's relationship with grandma, even before all this started, but it's kind of peripheral to the question I'm wondering about, how else can I cope/how have you done so? Am I wrong-headed for avoiding the stress of conversations with her as much as I can?

posted by Alensin to Human Relations (5 answers total)

My first question would be who is taking care of her now? Is she in a facility? Does she have local family? If she's far enough down the dementia path, soon she won't be able to make her own meals or find her way home. It is extremely important that she has someone who is caring for her.

HOWEVER, moving her to wherever you are would be incredibly disorienting for her. Different culture, language, and nothing familiar other than your mother and you. I don't think nearing 90 years old is the time to drastically change her entire life, as long as her needs are being met there. This kind of move would definitely not be in her best interest, as much as whoever local to her suggests that it might be. If she currently doesn't have a full-time caregiver, your effort would be better spent finding someone to help her. Whether that's a nursing home, assisted living, or a live-in carer depends on how impaired she currently is. The time for denial is past—the time for concrete action is now. Maybe your mother could visit her (BRIEFLY) in Thailand to help select the right option.

If communication is difficult for you, perhaps you could write your feelings/thoughts about her in a letter, have it translated, and send it along. You might regret not communicating after she's gone, but you won't regret making an effort.
posted by clone boulevard at 10:03 PM on August 13, 2018 [5 favorites]

So to answer your specific question, I live with my mother who has dementia. Soon I won't be able to care for her by myself and I'll have to arrange for her to move to a facility of some kind. This makes me feel incredibly guilty, as does every time I argue with her or say something mean. Dementia is a terrible disease and makes everyone involve feel pretty bad pretty much all the time. I mean, their brain is dying. It often changes entire personalities. The fact that you're finding it difficult communicating with her is pretty much normal, sad to say. If you want to learn about dementia and maybe find some better ways to communicate with your grandmother, I recommend Teepa Snow videos on YouTube. There are sensory issues way beyond hearing, and she tackles some of them. I'm sorry for your troubles! Don't be hard on yourself. It's not you, it's the disease.
posted by clone boulevard at 10:10 PM on August 13, 2018 [5 favorites]

Am I wrong-headed for avoiding the stress of conversations with her as much as I can?

If there are, in fact, ways that your conversations with your grandma can be helpful to her or can ease your mom's burden, I think you may come to regret not stepping up at a time when your input is needed. Perhaps consider it practice—it's likely that this won't be the last time you're faced with a loved one in failing health.

I'll leave the specifics of dealing with dementia to those with more experience, like clone boulevard.
posted by she's not there at 3:19 AM on August 14, 2018

I'm right there with you - I don't think there is a right way to cope. What I've done when conversations have become too difficult is to send things that are sensory (an example of the sort of things on offer) like those in the link but more homemade - since things get forgotten about anyway. It hopefully helps everyone a little. It's tough, good luck.
posted by london explorer girl at 8:22 AM on August 14, 2018

The only way I was able to cope with my grandmother's last few years with dementia was to trust her caretakers (her youngest son and daughter who live in her house). They often made decisions about her care that the rest of the family didn't agree with but my aunt and especially my uncle, were with her almost 24/7 and kept her fed and bathed.

When my grandmother first began showing signs of dementia I had a talk with her where I told her how much I loved her and how many great memories I'd had with her and how proud I was of her and how she'd led her life. I was comforted, as she got less cognizant, that I had said to her what I needed to say while she could still understand.

I also think it's important to consider that a person at any stage of dementia may not be logical or able to have conversation that makes sense to the other participants.

It's great of you to be supporting your mom. You can consider that by helping your mom vent about conversations with her own mom that you're supporting your grandmother by giving your mom more strength to interact with her.
posted by bendy at 9:56 PM on August 14, 2018