How to get better treatment for a bedbound, Chinese-speaking senior
March 30, 2015 12:47 AM Subscribe
My grandmother (85) living in Sydney, Australia had a stroke about 10 years ago, leaving her with no control of the left side of her body. Her condition has deteriorated such that she can no longer sit up without pain. The staff at her nursing home are generally kind, but aren’t doing much to help. We're in need of some ideas or leads for how to improve her situation, taking into account that she is effectively bedridden and can’t speak English.
I am trying to help my dear grandmother who has unfortunately had a very difficult time since suffering a stroke. After the stroke, she lost voluntary control of her left arm and leg. Despite this, she could still kind of get around by hopping on one foot and using a cane. However, about five years ago, she developed a contracture/stiffness in her stroke-affected leg, which meant she could no longer balance while standing (or at least, she had a couple falls, so the nursing home said she shouldn’t stand anymore). She could still sit up, however. So, I tried to get her a one-arm drive wheelchair that she could use with her good arm and leg. However, the nursing home physiotherapist said she shouldn’t have it, saying that by using her good arm, she risks damaging it (unfortunately, I had to move to a different city at that point, so couldn’t do much to protest). Perhaps because she lost her mobility, she has gotten lethargic and has stopped sitting up. It’s gotten to the point where she basically lies in bed all day. The nursing home staff have tried to get her to sit up, but they report that she cries in pain whenever they try to make her do this. I’m afraid she’s going to lose the ability to sit up entirely if left to her own devices.
I’ve tried to encourage her to sit up when I visit, but given that I don’t speak her language, I don't think she's getting the message. And, for all I know, maybe there is some sort of physical impediment stopping her from sitting up. I would ultimately like her to be able to regain some mobility, maybe trying a different type of wheelchair. But she can't do this if she doesn't start sitting up again and regaining strength.
A large part of the problem I believe is that no one has worked with her to maintain her mobility. The nursing home staff are well-intentioned, but the nurses are overworked. They’re content to just try to make her comfortable. Moreover, my grandmother only speaks Hakka (a dialect of Chinese spoken in her village in Hong Kong and various other parts of southeast Asia) and understands some Cantonese, and unfortunately nobody at the nursing home speaks these languages. So, even when the staff try to get her to do things, she often will not do them as she doesn't understand what they're saying or why they're trying to get her to do things.
So, I’m now trying to think of other options to help her. My first thought was to try to get a physiotherapist to work with her. While the nursing home does have a physiotherapist, she seems overworked and doesn’t seem to view my grandmother as a priority. After the wheelchair trial, she promised to have a physiotherapy aide come and do exercises with my grandmother. However, in practice, the aid came sporadically, applied some ultrasound and then left. Over time the physio aide just stopped coming, leaving my grandmother’s condition to deteriorate. Even if the physiotherapist/aide were keen on trying to help my grandmother, I’m not sure how far they could get without being able to communicate with her in her language.
My other idea was to get an external physiotherapist to come in. We'd be happy to pay for the services of a physiotherapist or whoever, as long as they consistently followed up and really put in some effort. However, I suspect to make progress they would need to either speak Chinese or we would have to be able to get a translator. Also, because my grandmother finds it difficult to sit up, they would need to come to her. I did try calling a few physiotherapists in her area (Blacktown, NSW), but the ones I called didn't seem to do home visits. Moreover, I still haven't solved the language issue. I was thinking of maybe having a translator and the physiotherapist come at the same time. However, I'm not sure we would be able to regularly afford it unless the translator was pretty affordable (e.g. something like $35 an hour), and from my understanding, they're usually not this cheap. We do have some family members who could help translate, but they all live really far away and could only come on the weekends and not consistently.
So, I suppose I need some ideas on how to best help my grandmother. Should I try to get an outside physiotherapist to come in? If so, how can I find someone who speaks her language or otherwise overcome the language barrier? Also, if anyone has had similar experiences with her symptoms/condition who might have other therapies or approaches I could try, please let me know. I’m a bit stuck on this one, so any and all help would be appreciated!
I am trying to help my dear grandmother who has unfortunately had a very difficult time since suffering a stroke. After the stroke, she lost voluntary control of her left arm and leg. Despite this, she could still kind of get around by hopping on one foot and using a cane. However, about five years ago, she developed a contracture/stiffness in her stroke-affected leg, which meant she could no longer balance while standing (or at least, she had a couple falls, so the nursing home said she shouldn’t stand anymore). She could still sit up, however. So, I tried to get her a one-arm drive wheelchair that she could use with her good arm and leg. However, the nursing home physiotherapist said she shouldn’t have it, saying that by using her good arm, she risks damaging it (unfortunately, I had to move to a different city at that point, so couldn’t do much to protest). Perhaps because she lost her mobility, she has gotten lethargic and has stopped sitting up. It’s gotten to the point where she basically lies in bed all day. The nursing home staff have tried to get her to sit up, but they report that she cries in pain whenever they try to make her do this. I’m afraid she’s going to lose the ability to sit up entirely if left to her own devices.
I’ve tried to encourage her to sit up when I visit, but given that I don’t speak her language, I don't think she's getting the message. And, for all I know, maybe there is some sort of physical impediment stopping her from sitting up. I would ultimately like her to be able to regain some mobility, maybe trying a different type of wheelchair. But she can't do this if she doesn't start sitting up again and regaining strength.
A large part of the problem I believe is that no one has worked with her to maintain her mobility. The nursing home staff are well-intentioned, but the nurses are overworked. They’re content to just try to make her comfortable. Moreover, my grandmother only speaks Hakka (a dialect of Chinese spoken in her village in Hong Kong and various other parts of southeast Asia) and understands some Cantonese, and unfortunately nobody at the nursing home speaks these languages. So, even when the staff try to get her to do things, she often will not do them as she doesn't understand what they're saying or why they're trying to get her to do things.
So, I’m now trying to think of other options to help her. My first thought was to try to get a physiotherapist to work with her. While the nursing home does have a physiotherapist, she seems overworked and doesn’t seem to view my grandmother as a priority. After the wheelchair trial, she promised to have a physiotherapy aide come and do exercises with my grandmother. However, in practice, the aid came sporadically, applied some ultrasound and then left. Over time the physio aide just stopped coming, leaving my grandmother’s condition to deteriorate. Even if the physiotherapist/aide were keen on trying to help my grandmother, I’m not sure how far they could get without being able to communicate with her in her language.
My other idea was to get an external physiotherapist to come in. We'd be happy to pay for the services of a physiotherapist or whoever, as long as they consistently followed up and really put in some effort. However, I suspect to make progress they would need to either speak Chinese or we would have to be able to get a translator. Also, because my grandmother finds it difficult to sit up, they would need to come to her. I did try calling a few physiotherapists in her area (Blacktown, NSW), but the ones I called didn't seem to do home visits. Moreover, I still haven't solved the language issue. I was thinking of maybe having a translator and the physiotherapist come at the same time. However, I'm not sure we would be able to regularly afford it unless the translator was pretty affordable (e.g. something like $35 an hour), and from my understanding, they're usually not this cheap. We do have some family members who could help translate, but they all live really far away and could only come on the weekends and not consistently.
So, I suppose I need some ideas on how to best help my grandmother. Should I try to get an outside physiotherapist to come in? If so, how can I find someone who speaks her language or otherwise overcome the language barrier? Also, if anyone has had similar experiences with her symptoms/condition who might have other therapies or approaches I could try, please let me know. I’m a bit stuck on this one, so any and all help would be appreciated!
Also, if she can read or type, I wonder if she could use an iPhone to translate for her. I used to use Google translate like crazy at my old job, and it wasn't perfect but it saved my butt plenty of times. Here's one site that apparently translates between Hakka and English, although I can't guess how useful it is.
posted by Ursula Hitler at 1:24 AM on March 30, 2015
posted by Ursula Hitler at 1:24 AM on March 30, 2015
I'm on my phone but you need to speak to her local Aged Care Assessment Team. I think they work out of Blacktown Hospital. Her gp also needs to be advocating for her. I assume they speak the dialect. Ring the gp first. It's possible (likely) she has depression and that's hard to treat in the elderly and makes them resistant to making huge efforts. She's also old and tired. She may just want to be left alone. If this is the case, maybe source some dialect speaking volunteers to massage her feet (pressure sores hurt) and sing some familiar songs.
Really, she just needs an advocate. Be prepared to hear that she doesn't want the things you want.
(Happy to email or talk on the phone if you'd like more suggestions .)
posted by taff at 1:41 AM on March 30, 2015 [2 favorites]
Really, she just needs an advocate. Be prepared to hear that she doesn't want the things you want.
(Happy to email or talk on the phone if you'd like more suggestions .)
posted by taff at 1:41 AM on March 30, 2015 [2 favorites]
Blacktown ACAT. They'd have to have assessed your grandma for her to be in a nursing home. Start with her gp then see what joy ACAT can give if necessary.
I'm of the opinion that company, human touch, companion animals and the babbling voices of children are what she (and most people in aged care) needs.
posted by taff at 1:52 AM on March 30, 2015
I'm of the opinion that company, human touch, companion animals and the babbling voices of children are what she (and most people in aged care) needs.
posted by taff at 1:52 AM on March 30, 2015
Is there any possibility that she can be moved to a home closer to any of her relatives? Nursing homes do generally mean well, in my experience, but it's very helpful, if you have concerns about her care, if you or someone else who loves her, can be there to work things out - not to mention the value in her getting visits. Also, nursing homes vary widely in quality and usefulness - is there a home nearby with Chinese speaking staff? Is there a Chinese or Hong Kong/Australia community club that might be able to suggest if there is one close by?
posted by mythical anthropomorphic amphibian at 2:51 AM on March 30, 2015
posted by mythical anthropomorphic amphibian at 2:51 AM on March 30, 2015
One small thing that might offer some comfort to her is a communication picture board. If you do a google images search for "hospital communication board," you can get lots of pictures to help patients communicate their physical needs and comfort level. Here's an example.
posted by shortyJBot at 3:58 AM on March 30, 2015
posted by shortyJBot at 3:58 AM on March 30, 2015
Seconding talking to her GP and the local ACAT team!
You could also make an appointment to ask the nursing home for more information about her care plans. Since pain is limiting her activity, you need to ask about the pain management strategies and how they are monitored. You may need to talk to her GP as well. Pain can definitely be managed in older people, even with limited communication. Perhaps also ask some probing questions about their interpreter services (since they should have one!) and communication strategies.
There are private physiotherapists and allied health teams out there... keep searching. I think Healthstrong do some private work, so may be worth a call.
posted by liss at 4:15 AM on March 30, 2015
You could also make an appointment to ask the nursing home for more information about her care plans. Since pain is limiting her activity, you need to ask about the pain management strategies and how they are monitored. You may need to talk to her GP as well. Pain can definitely be managed in older people, even with limited communication. Perhaps also ask some probing questions about their interpreter services (since they should have one!) and communication strategies.
There are private physiotherapists and allied health teams out there... keep searching. I think Healthstrong do some private work, so may be worth a call.
posted by liss at 4:15 AM on March 30, 2015
Seconding that addressing the communication issue will be key to the other issues here. Can you advertise for and hire a Hakka, or in a pinch Cantonese speaking 'aide' for her? Someone with health care awareness (personal support worker, nursing student, retired nurse) would be ideal, but even someone who is kind and can follow direction would potentially work. They would be able to support the staff in communicating with your grandmother as well as encourage your grandmother in prescribed activities, and be present for many more hours than a higher paid professional staff member.
I would also suggest making sure than if she is spending large periods of time in bed, that her bed and mattress are meeting needs. Hopefully she has an adjustable bed, and can adjust it herself (meaning an electric bed) and has a mattress that helps protect her skin. An adjustable bed can help increase her tolerance for sitting, by making it easy to get her into semi sitting position and increase her function by making it easy to position her for function (think meals, watching television/DVD, etc). Physio and Occupation Therapy both have an interest in appropriate seating/bed, so both should be involved in ensuring this need is being met.
posted by Northbysomewhatcrazy at 6:46 AM on March 30, 2015
I would also suggest making sure than if she is spending large periods of time in bed, that her bed and mattress are meeting needs. Hopefully she has an adjustable bed, and can adjust it herself (meaning an electric bed) and has a mattress that helps protect her skin. An adjustable bed can help increase her tolerance for sitting, by making it easy to get her into semi sitting position and increase her function by making it easy to position her for function (think meals, watching television/DVD, etc). Physio and Occupation Therapy both have an interest in appropriate seating/bed, so both should be involved in ensuring this need is being met.
posted by Northbysomewhatcrazy at 6:46 AM on March 30, 2015
I like the idea of the language board. I'd go a step further, get one (or a few) that might be useful and send them to a family member to write the Chinese equivalents on each space (with an extra-fine Sharpie?).
Also, even if family members can only be there on the weekends, do you think that even a few sessions with family+physiotherapist could get the ball rolling, and maybe the physiotherapist (+perhaps your craigslist not-quite-a-translator) could take it from there?
posted by telepanda at 6:48 AM on March 30, 2015
Also, even if family members can only be there on the weekends, do you think that even a few sessions with family+physiotherapist could get the ball rolling, and maybe the physiotherapist (+perhaps your craigslist not-quite-a-translator) could take it from there?
posted by telepanda at 6:48 AM on March 30, 2015
Response by poster: Thank you everyone so much for your help. I’m touched that other people have taken the time to write out these thoughts. I have to admit I was afraid I might not get any replies to this, but it actually is very heartening to not feel alone in solving this problem.
I think these are all great ideas and I will definitely be going down the list trying to implement them.
That is a really good idea about talking to the GP. I’m not sure why I haven’t thought of it yet, but I definitely will try to speak to her.
To everyone suggesting the ACAT team – I thought that ACAT was mostly just to assess people for placement into nursing homes. Do they also do follow up care?
I agree that the language barrier is a major issue. I like the idea of getting a kind of Chinese speaking casual assistant; the challenge will be finding someone. They do have kind of an Australian version of Craigslist called Gumtree. I will probably try to post an ad there. Maybe there’s some kind of Chinese classifieds as well (?)… I will have a look into this.
You guys are right that we probably could get the family to help, at least initially, with the translating. Maybe we could do a teleconference or something like this in a worst-case scenario.
Ultimately, I do agree with taff that it’s having more company/a human connection would be ideal. I feel like this is definitely something to strive for. In the short-term, I feel like just getting her some proper treatment would give her a sense of hope, as I do think she wants to improve her situation.
posted by strekker at 8:48 AM on March 30, 2015
I think these are all great ideas and I will definitely be going down the list trying to implement them.
That is a really good idea about talking to the GP. I’m not sure why I haven’t thought of it yet, but I definitely will try to speak to her.
To everyone suggesting the ACAT team – I thought that ACAT was mostly just to assess people for placement into nursing homes. Do they also do follow up care?
I agree that the language barrier is a major issue. I like the idea of getting a kind of Chinese speaking casual assistant; the challenge will be finding someone. They do have kind of an Australian version of Craigslist called Gumtree. I will probably try to post an ad there. Maybe there’s some kind of Chinese classifieds as well (?)… I will have a look into this.
You guys are right that we probably could get the family to help, at least initially, with the translating. Maybe we could do a teleconference or something like this in a worst-case scenario.
Ultimately, I do agree with taff that it’s having more company/a human connection would be ideal. I feel like this is definitely something to strive for. In the short-term, I feel like just getting her some proper treatment would give her a sense of hope, as I do think she wants to improve her situation.
posted by strekker at 8:48 AM on March 30, 2015
I use to work with someone who was an organizer for an American/Chinese society. You might see if there's any group like that and ask if anyone is willing to translate. I did a quick search and found a meet up group for Sydney to promote speaking Mandarin and Cantonese languages. I know it's not Hakka but you might post there and see if anyone speaks or knows where you could find someone who speaks Hakka.
The Sydney Chinese Language & Culture Meetup
posted by stray thoughts at 4:30 PM on March 30, 2015 [2 favorites]
The Sydney Chinese Language & Culture Meetup
posted by stray thoughts at 4:30 PM on March 30, 2015 [2 favorites]
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Do the family members have to be there, to translate? Could they do it over the phone, or could you maybe set up some sort of Skype deal on a laptop?
If that's not an option for whatever reason, is there some local equivalent to Craigslist where you could run an ad for a Hakka or Cantonese speaker (a non-pro translator) to come in and help at a rate you could afford? In my experience as a healthcare worker, you really don't always need a pro translator to communicate across a language barrier. As long as you have somebody there who is reasonably familiar with the language, they can probably get the job done.
Perhaps this is really pie-in-the-sky, but I wonder if your grandmother would be helped by some instructional videos or books to teach her English. Even knowing some basics, like, "I am thirsty," or "my head hurts," could go a long way toward improving her situation and making her feel like she has some control over her life. At my old job I had a Spanish speaking co-worker write up a page of 10-15 specific Spanish phrases, and those got me through a lot of interactions with patients. There may be an assumption here that she can't learn English, but even just learning the right 15 words may improve her life a lot.
I hope you can work something out, and soon. You sound like a good grandkid!
posted by Ursula Hitler at 1:15 AM on March 30, 2015 [2 favorites]